Tuesday, December 27, 2005 1:21 AM CST
***NEW PHOTOS FROM CHRISTMAS***
***UPDATE***
1st January 2006
Well, good morning everyone! Happy New Year!!! It is already the New Year here in Australia. I am going to leave the update on below because I only just wrote that a couple of days ago...so catch up with everything that has been happening.
So what did we do for New Year? Alan, Isaac and I attend an AOG church which is about 95 to 98lack African. It is a great church and it is tradition that we have a celebration service/party on New Year's Eve. There is prayer, worship, dancing, items, choirs, food, testimonies...and then when we count down to midnight...and then it is the New Year...the Africans go wild with their African music and dancing. This is all the tribal type music. And they sure know how to dance. I was surprised that Isaac did not fall asleep but stayed by and joined in the dancing as Isaac and I joined a congo line and danced around the church. The food was good, the company was great and we got home around 2am. Got to sleep late. However, the Africans often dance til something like 4 am in the morning. Needless to say that I am tired this morning even though I slept til 1115am. Isaac slept in as well and Alan...but not nearly as long as me.
So it is now 2006 and we look forward to what God has in store for us this year. Hope you all have a Happy New Year!
Love Charisse
PS. Please also read below. It is only a new update
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Good Afternoon Everyone,
First of all...just before Christmas on the 19th December...Alan and I celebrated our 7th year wedding anniversary. I was only 20 when I married Alan and he was 21 years old. Praise the Lord that we are still together 7 years later. Praise the Lord that I am still alive to this day. We have a wonderful marriage and I love Alan very much. Thank you, Alan, for 7 wonderful years of marriage. I love you.
Hope you all had a wonderful Christmas!!!! We did and we are still having a great time. Alan is on holidays until just after New Years and it has been great having him home for once!
We have had an eventful Christmas...on Thursday last week we went as a family to a little Town called Lobethal. This town has the majority of the houses all lit up with fairy lights in different designs and stuff on the houses and in their front yards and in the windows. It is so Christmasy and beautiful and we thought that Isaac would appreciate the lights this year. They also have a live Nativity Play with real camels, sheep, goats, a real baby and people and a choir and music....we sat and watched that as well. Many times during the night I sighed and looked at Alan and said that I was in Heaven. It was so nice to ignore everything else and appreciate what Christmas is....appreciate Jesus for who He is and appreciate my family. I will have some pictures in the picture section of Lobethal.
Then on Christmas Eve we attended our African church for a service. I sang an item about Jesus and there was a Naticity play done by the children and Christmas carols...it was lovely.
Then when we got home, Isaac went to sleep and we put the presents out under the tree. When Isaac woke the next morning he was so excited to see that Santa had come. We have also shared the real meaning of Christmas with Isaac. We want him to know about Jesus.
He opened his presents and was so animated and excited. He got a wooden microwave, fake food and a doctor's bag....from family members...more cooking utensils and train sets and you name it...can you guess that Isaac likes cooking?
Alan and I enjoyed opening our gifts as well. We had lunch with Alan's family and dinner with my family. it was a busy day and we got home just after midnight.
The days after Christmas have been spent tidying up and relaxing. Isaac has been playing non-stop with his new toys and his train set...which is Thomas the Tank Engine...has had real usage.
Tomorrow we plan to go to Monarto Zoo....it is a drive through zoo where the animals are in their own habitats and you drive through into the enclosure with them...they have cheetahs and all sorts of African animals..I will post the photos after tomorrow.
Then tomorrow night Alan and I are going to go and see "The Lion The Witch and the Wardrobe"....a marvellous book and film that basically is about Jesus and the sacrifice He ultimately made by dying for us all and raising from the dead again....except that He is represented by a lion in this film...it is a magnificent book and I am excited to see what the film is like.
SO check out the photo album as I am putting new photos in there tonight.
Bless you and catch up soon. Have a great New Year!!!!
Love Charisse
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Monday, December 19, 2005 5:28 AM CST
Merry Christmas Everyone!
I am feeling heaps better. Although I had my infusion on the weekend and I am still feeling the effects of my reaction. That should be over by the weekend and Christmas time! My white cell count has now come up again since the flu.....I always long for better counts in the long run anyway..sinc they have been fluctuating quite a bit lately...however, praise the Lord that my white cell count in up - no wonder I am feeling better and more energised.
I have completed all my Christmas shopping and feel excited about Christmas day. Isaac is 3 years old this year and already has an expectation of Christmas. Last year he didn't really know what was going on...but this year...he seems so excited, thus making me feel the spirit of Christmas more and I feel like an excited child. It is gonna be good this year.
I have a bone marrow biopsy booked for January some time...yuck and I have an ENT appointment on the 30th December...does anything ever stop? No...not really....oh well...commit it to the Lord.
My nanny is working out so well. It is good to have the house cleaned for me on a Thursday....she does it so well, she cares for Isaac well when I am asleep...she helps out when I am awake, she gives me time out with Isaac.....and she is great company for me as well...we talk like close friends....obviously we are not close friends since I have only met her twice...but she is so easy to chat to and has bought FA bands off me and been real interested in knowing more about FA.
Well, I need to get to bed. I am trying to save my energy for Christmas day. This next year will be an interesting one. Some exciting things are gonna happen I am sure. With Jesus in control, life is always exciting and full of expectation.
God bless you all and remember that Christmas is a beautiful time of giving...the ultimate gift that was given for us human beings was Jesus....Praise Jesus for His faithfulness, love and peace all year round.
Lots of love,
Charisse
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Tuesday, December 13, 2005 11:38 PM CST
Hello All,
don't mind me but I found out more about my inside female parts the other day and I wanted to share with you all about it.
As most of you know I have a son, Isaac who was born at 27 weeks gestation and weighed 950 grams ( 2 pound 2 ounces)...he was in hospital for 3 months and now he is a healthy 3 year old boy.
I just want to publically praise God for the miracle He has done for me. I knew that I had an abnormal cervix after the birth because they did exploratory surgery on me to see why I had Isaac so premature.
I didn't realise until yesterday the extent of the abnormality when I really had it explained to me properly. I was under the impression that it was in the wrong place....my cervix and shaped wrong and so it was incompetent and couldn't hold Isaac in properly.
Excuse me for being graphic in explaining...may be this will also help mothers and fathers with female FA patients in relation to this whole gynae area and having babies.
A normal cervix comes down into the vaginal shaft usually....and that is where they do pap smears and tie stitches for incompetent cervixes......well my cervix doesn't enter the vaginal region at all. There is no bulk to my cervix...it is flat against the top of the vaginal wall (inside I am talking about -- going up towards the womb).....I have a flat cervix which has NO length or any kind of bulk to it at all......but there is a cervix..this might be confusing and I don't know how to explain it properly via computer.
Anyway.......I could show you with a diagram...hehe
so...since it is flat.....there is nothing to hold the baby in and they told me that Isaac would usually come at 20 or 22 weeks gestation and when he did come...that is why he actually fell out without laboring - and that it is a pure mircale of God that he survived long enough to be born at 27 weeks......and then to be a normal little boy! He is my miracle.
As many of you know I am a born again Christian and I give all my praise to Jesus....He gave me Isaac when I had no idea that I cannot hold a baby, physically past 20 to 22 weeks. So Isaac is my miracle.
Also, because of this FA abnormality......they were trying to do pap smears on me for ages and couldn't see a cervix or reach it...they had no idea what they were doing.....now we know..........well we found out after Isaac's birth.....but I have pap smears done under a general anaesthetic so they can get to my SPECIAL cervix. And I prefer to call it special rather than abnormal.
So any FA ladies or girls....if you are having trouble in this area...there could be an anatomical problem and it is very helpful to find out. Finding out about all this has helped me with the female things.
Bless you all and have a safe week....I hope I didn't bore you all.
Love Charisse
(FA Adult - almost 28 years old - mum of Isaac 3 years)
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Tuesday, December 6, 2005 10:43 PM CST
Good afternoon,
well I am feeling much better than I have the last month or two. I still tire easily and have to pace myself heaps...but with making sure I have a good night's sleep and pacing myself during the week...I seem to be improving. Both grandparents help out a bit and Alan and I have decided that it is right for us to hire a nanny/house cleaner on Thursdays to help take the load off a bit. I get tired with my housework and then I get aggrivated and exhausted. The nanny is from in house care.....not just a nanny.....and she will help me with Isaac that day when I need to have a sleep in that morning. Basically she will be my helper in everything that day to ease the work load a bit, espeically the house work. The governement helps us with paying her which is good. The nanny will not restrict me to staying home that day. I am still allowed to go out with my friends to shop or swim...she will be entitled to come along with me and help me basically....just the one day....I do not have people helping me here every day unless I am sick...I need to be by myself some days and just with Isaac otherwise I go crazy! Once again thank you to both Alan and my parents for helping us while I have been sick. And I will still enjoy the days that you come to help. Mum I love you and thank you for all the chats and "mother time" we have on Tuesdays. I want to say that yesterday I thoroughly enjoyed spending the day with you talking about Jesus, about the future and hope and then doing our crazy Christmas shopping. Thanks for that. I love you very much.
Anyway, Christmas is coming up...and obviously mum and I attempted the Christmas shopping yesterday and I think we both did very well. Isaac was very patient in his stroller. We did let him run around at times. I got most of my shopping done and felt very pleased.
I have SO many appointments!!! It is crazy. I counted them. I have 7 appointments starting from next week and going into the new year! Boy, talk about trying to fit it all in....these are just surveillance and check ups.....my haematologist cancelled Monday just gone...so I have that Monday, then I have an ENT appointment, my infusion, a liver appointment (gastroenterologist) and I go back to see my Gynae/Obst again .........by the way all my gynae surveillance was clear!
So it is busy and I initially felt a but stressed but I am gonna take it in my stride and be happy they are all over. Once they are over I actually feel like I can breathe and relax a bit better. I dislike appointments so having them spread out is sometimes overwhelming...close together is also overwhelming but I like getting it over and done with now that I am an adult.
That's all from me today so have a good rest of the week.
Love Charisse
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Friday, December 2, 2005 4:34 AM CST
Good Evening All,
it is Friday here in Australia and 9pm at night. I hope you all had a good week.
I have felt a lot stronger this week...Praise the Lord! I struggle so much emotionally when I feel physically lethargic and tired.
I am so proud of myself because I have done so much this week. A quick summary: I tidied the house and cleaned, did loads of washing on Monday, went Christmas shopping on Tuesday, attended a double session of kindergym with Isaac and friends on Wednesday, Thursday I did nothing literally except play with Isaac and today, Friday, we had Isaac's annual Premie Christmas Party from 1pm to 4pm. That is a lot for me when I am still feeling not quite "normal" within myself. I am definitely stronger but notice that I am not quite there yet...still a bit more strength to come back since the flu...it will come.
So today I went to Isaac's Premie Party which is put on and completely decked out by the Women's and children's hospital which is where Isaac was born 13 weeks early. Any baby born under the weight of 1000grams gets to attend this party every Christmas until they are 10 years old. Obviously this section is entirely different to the haematology section so not as threatening to me. The old part of the hospital is the part I struggle with. Anyway, the head neonatologist dresses up as Santa and they have a good time. Isaac LOVED his day. Nanna came as well. Unfortunately Alan couldn't make it to Isaac's special day. Isaac loved the lady bird ride even though he didn't want to get on it. He wanted to run around it like a train. He didn't want to look at Santa but some how Nanna managed to get a front on photo...well done Nanna! He loved the chips, the ice cream, having his hand painted instead of his face, playing with the football, making friends, seeing Humphrey B Bear. It was a good day. So I have put NEW photos in the photo section of our day and hope you like them.
What is left to update on. My mouth ulcers are almost all gone. The gums around the bottom front teeth are still red and swollen and sore but a lot better. Everywhere else has cleared up. My toe, well that is still going...once I was well they were going to start me on some anitbiotics that fight staph infections for 2 to 3 months. I have an appointment with my haematologist on Monday.
My parents went to see my haematologist for the first time last Monday. They have never met him before because I went to him as an adult not as a child. They were able to get to know him and have a chat with my permission....and they like him...so I am glad they had a good time.
Otherwise, that is it for me. Talk to you all later and have a good weekend.
Love Charisse
Saturday, December 31, 2005
Wednesday, November 30, 2005
November 2005 entries
Friday, November 25, 2005 5:27 PM CST
Happy Thanksgiving to All!,
good morning everyone! I hope you are all having a wonderful Thanksgiving. As you all know I live in Australia and we don't have thanksgiving in Australia because it is an American holiday. It is to do with American History and so I suppose it makes sense that America celebrates it and not Australia. However, it has been an honour to learn about the history behind Thanksgiving as many of my dear friends have explained and enlightened me on this...yes, before this year I have never been sure what Thanksgiving in America is all about. I have seen it on TV and my parents used to be in America for a while...so I knew I it from them...but it is only just this weekend that I have understood it properly. So thanks to all and I pray your holiday is great!
I am still getting better. I have still been lethargic. Simple things take my energy away. I have still been having people help me during the day so I can get the rest that is needed. Thanks to Denise and my mum for helping me...to the dads for understanding and a deep thanks to my husband for sacrificing time off work to care for me. To me that is a big thing and one that I am truly grateful for. Thank you. Alan, you are great with Isaac and a wonderful father and husband, dedicated to our cause and challenges that we always seem to face on this road of Fanconi Anaemia and life's road. We continue to trust in Jesus for a miracle and for guidance on this walk of faith. Please continue to pray that my strength gets greater and greater so I can have less help from people. It is frustrating to not be the "woman" of the house and need help, but it does teach me to be humble.
My white cell count was down with my last test. I have had a test since but I don't know the results yet. I may be starting a slightly higher dose of prednisolone to help boost the counts since my "flu" bout....and what a relief it will be to boost the neutriphils a bit so I can have a bit more strength and less mouth ulcers.
I still have some mouth ulcers. They have healed really well so far. The haematologist said that it would take 3 weeks from when I saw him and it has been about 2 weeks. They are very close to being all gone. My gums are still soft and red and bleed a bit. I still can feel pain but it is much improved. So I expect with another week and more rest, taking it easy....my mouth should be close to being better. Fanconi Anaemia patients are slow to heal but we get there.
My toe!!! My toe is a chronic infection and since my neutriphils have been low is continues to remain there. With the type of infection I have .....it needs 2 to 3 months of low dose antibiotics rather than a week of IV antibiotic. We are waiting for me to be a bit better before we start the type of antibiotics....the ones that fight staph infections...they give me some gastric problems and so we wanted to wait til I felt stronger before I endure this.
Otherwise, things are improving and I am starting to feel a lot more joy.
However the other night I had a bad night's sleep. I tossed and turned from 12am to 3am and then was awake until 4.50am....fell asleep, had a nightmare or 2 and woke at 5am scared stiff and was then awake until 6am. I didn't have much sleep at all. Even though I slept in, in the morning...it knocked me around that day. Luckily Alan stayed with me that day because I was exhausted and felt very unwell. I ended up going back to bed in the afternoon and sleeping. The next day I slept in until 1130am....I must have been so tired I think!
Well, once again...thanks to the two mums who have helped, the dads who have understood and my lovely husband who is always trying to do what is best for me. I love you.
Bless you all and have a great Thanksgiving.
Love Charisse
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Saturday, November 19, 2005 3:46 AM CST
Hello All,
first of all.....There are NEW PHOTOS AGAIN....Alan and I were reminising tonight about the "old days"! HA! I found some pictures of me at my 19th birthday and Alan and I were dating at the time. Alan and my engagement party and I added a picture at my bridal shower with my mum and I ...I was dressed in a toilet paper wedding gown created by my friends for me...pictures of my brother, Shannon, who also had FA and died in October 1994....he had a transplant that year. Shannon and I were really close and he was a terrific guy...always so happy! Also I have added some photos of Isaac when he was first born and also of him a lot younger than now. Most of you would know he just had his 3rd birthday on the 8th November...so to look back at his photos and remember is wonderful. He was born at 27 weeks gestation and weighed only 2 pound 2 (950 grams). Enjoy the photos...I think I look younger...obviously I am younger!
Anyway, update on me so far. I saw the haematologist this week and he expects that I will take a little longer to recover from this flu bug. I had it severely and I am still trying to build up my strength. The ulcers in my mouth are still bad but improving slowly and he expects them to linger around another 3 weeks considering how sick I have been and how my white cell count dropped from the illness...it should pick up again soon though.
I had my gynae surveillance this week and that went really well....everything looked clear with the coloposcopy and hysteroscopy and I am waiting for the pap smear results.
I had an IVIG infusion yesterday, had my usual reaction, stayed in hospital overnight and now I am home again....still feeling off...but with a positive attitude that I will improve. I know this infusion helps my immunity so I am grateful for it even though I never enjoy staying in hospital.
Well, I am going to go for a small walk to a house in our neighbourhood that has Christmas lights all over....with Isaac and Alan and then I am going to take care of myself again all night, get an early sleep.
Bless you all and will update again soon.
Love Charisse
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Friday, November 11, 2005 2:07 AM CST
Sunday 13th november
**UPDATE**
Well, as I said below..Isaac had his toddler party on Saturday. Below I talk about his family party. NOw I am going to tell you about his toddler party and I need to add some more pictures I think. There are pictures in the photo section of Isaac's parties. It went so well. I was so surprised at how well all the children held out for the party. Isaac was the oldest. All the others were about 2 1/2 years old. Isaac had 4 friends and that was busy enough for me. He opened presents and showed his friends his bike that he got earlier on in the week. They played parce the parcel. That was so cute. These toddlers wanted to keep ripping more than one wrap off and were so excited when they got a gift from it. They all danced on the wiggle's mat and a little African boy was the best "bouncer" so he got a prize. They rode around on their bikes and cars outside, went up and down the slippery slide, tried to catch the bubbles that Alan blew from the toy saxophone. They all loved the train cake that Alan made! Alan did a great job of the train and Isaac was so pleased with himself as the children sang "Happy Birthday"....the kids wanted to sing it twice and Isaac beamed as everyone cheered while he blew out the candle with help from daddy! What a day! The whole party went for about 4 hours and I can say that I was positively exhausted at the end of it. My mum and mother-in-law were there to help...and bless them and Alan...I have still been so lethargic...that they did a lot of the heavy work...thanks to both the mums and Alan. I think I did extremely well considering how unwell I have been. Anyway, so that is some of the excitment. Well, bless you all and have a good week.
Love Charisse
**END**
Good evening,
just a quick update. Isaac's party went so well. He was so cute opening his PRESENTS as he loudly and excitedly exclaimed. His face was comical...he loved his veggie tales DVD's and his new bike, his Bob the Builder torch, Wiggles mat, big tonker truck, book piano and so on....ha....not all from Alan and I....have to remember that there were gifts from Aunties and Uncles, and grandparents and all.....Isaac loved the family party and most of all he loved the BIRTHDAY CAKE!!!! He looked so cute as he stuffed the mud cake in his mouth and then said with a mouth full, "more cake please".....ha ...it was funny. If you read this and the pictures are not on my site yet...I am in the process of getting them on....so give me a little moment.
Also to update.....my dear old toe is still a bit red but looking better...nothing showed up on the x-ray and no arthritis or anything...bloods showed inflammation but that is normal for how red my toe has been....looks like it is getting better...so we are leaving it for now.
On the flu front....I have been "not feeling well". Oh I am much better than last week and my throat is still much better...but at late afternoon and early and late evening I still feel fluey.....I ache and shake and feel real bad. I need to feel well. it is starting to affect me emotionally now. And the last couple of days I have broken out in ulcers, literally, all over my gums ....causing ear pain, headaches, neck pain, gland pain....I feel miserable! My wbc count was only 1.2 which is low for me and neutriphils are at 0.7.....I actually was surprised that they were not lower considering how this flu has knocked me about and all the ulcers I have. I am still so lethargic....tomorrow is Isaac's toddler party and I am still having it. I would be so depressed if I missed it because I am sick...so I need to just pamper myself and take care of myself during it and get lots of sleep tonight. Please pray for me. Please pray that I will get well...I know I will feel better once my immunity is up again. I have an IVIG infusion in one week and that will help in the long run.
Also, think of me next week as I go for my gynae check up that us FA patients do....I have a pap smear, a coloposcopy and a hysteroscopy....pray that they go well. I have it under anaesthetic because they cannot get in there easily......I am a bit different. I have nothing wrong with me...this is just survelliance. Please keep me in prayer.
Love you all,
Charisse
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Monday, November 7, 2005 2:48 AM CST
Hey!
Thanks for the prayers...my throat is MUCH better...I have finished my antibiotics...the liquid stuff and my chest is heaps better as well....I still have a nagging cough but nothing to cough up ....so that is good. The doctor thinks the flu virus is out of my system but I am left with the recovery stage...and with this flu...I have found out that it can take up to 3 weeks for someone to recover from if they are NOT immunosuppressed! I still feel faint and get shaky and hot when I am walking around too much. My energy is very limited but I have managed to keep myself out of bed in the last 2 days...in the afternoon....and just be on the couch! YES!!!
Anyway, so I am hoping, with help, to improve daily...I ahve my mum coming here to help me with Isaac and she is basically caring for me while I haven't got much strength...then back to the usual routine. Thanks mum! Thanks also to Alan's mum who has been coming regularly as well. I appreciate it all!
Tomorrow is ISAAC'S BIRTHDAY!!! He will be THREE!!!! We will do presents at night when Alan is home from work and my family will have tea with us....we will have some snacks and a birthday cake and present opening....should be a relaxed night and I shouldn't have to exert too much energy at all. So Happy birhtday my dear son...you are a credit to your mum and dad!!! Bless you heaps!!!
On Saturday we are having a toddler party. It was planned before I got sick and I cannot cancel it...I will just have to take it easy. I will tell you about that later.
Love you all,
Charisse
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Thursday, November 3, 2005 7:06 PM CST
Hello,
as I said in the last update...I haven't been well. The flu is going around our state at the moment and it is not nice. I have had the flu for 7 days which is viral with a bacterial chest and throat infection. It has been so bad that my throat closed and I couldn't get any fluids or antibiotics down.....so they changed me to liquid antibiotics and I managed to sqeeze that down. My throat is less swollen now and I can actually eat with pain. I still have blocked ears and feel weak, faint and have fevers...however my glands are less swollen.
I am sorry to those who I have not been able to check your websites...I am exhausted and just need time to recover.
I thought that I had been lucky to miss out on this bug while over in America...my brother-in-law had the flu while I was gone and he was SO sick with it...doesn't just make immunosuppressed people really sick.
On Tuesday my son will turn 3 years old. When I am feeling better I will tell you all about it. I am praying that I will feel better by then.....4 sleeps to go.
Bless you all and bye,
Charisse
Happy Thanksgiving to All!,
good morning everyone! I hope you are all having a wonderful Thanksgiving. As you all know I live in Australia and we don't have thanksgiving in Australia because it is an American holiday. It is to do with American History and so I suppose it makes sense that America celebrates it and not Australia. However, it has been an honour to learn about the history behind Thanksgiving as many of my dear friends have explained and enlightened me on this...yes, before this year I have never been sure what Thanksgiving in America is all about. I have seen it on TV and my parents used to be in America for a while...so I knew I it from them...but it is only just this weekend that I have understood it properly. So thanks to all and I pray your holiday is great!
I am still getting better. I have still been lethargic. Simple things take my energy away. I have still been having people help me during the day so I can get the rest that is needed. Thanks to Denise and my mum for helping me...to the dads for understanding and a deep thanks to my husband for sacrificing time off work to care for me. To me that is a big thing and one that I am truly grateful for. Thank you. Alan, you are great with Isaac and a wonderful father and husband, dedicated to our cause and challenges that we always seem to face on this road of Fanconi Anaemia and life's road. We continue to trust in Jesus for a miracle and for guidance on this walk of faith. Please continue to pray that my strength gets greater and greater so I can have less help from people. It is frustrating to not be the "woman" of the house and need help, but it does teach me to be humble.
My white cell count was down with my last test. I have had a test since but I don't know the results yet. I may be starting a slightly higher dose of prednisolone to help boost the counts since my "flu" bout....and what a relief it will be to boost the neutriphils a bit so I can have a bit more strength and less mouth ulcers.
I still have some mouth ulcers. They have healed really well so far. The haematologist said that it would take 3 weeks from when I saw him and it has been about 2 weeks. They are very close to being all gone. My gums are still soft and red and bleed a bit. I still can feel pain but it is much improved. So I expect with another week and more rest, taking it easy....my mouth should be close to being better. Fanconi Anaemia patients are slow to heal but we get there.
My toe!!! My toe is a chronic infection and since my neutriphils have been low is continues to remain there. With the type of infection I have .....it needs 2 to 3 months of low dose antibiotics rather than a week of IV antibiotic. We are waiting for me to be a bit better before we start the type of antibiotics....the ones that fight staph infections...they give me some gastric problems and so we wanted to wait til I felt stronger before I endure this.
Otherwise, things are improving and I am starting to feel a lot more joy.
However the other night I had a bad night's sleep. I tossed and turned from 12am to 3am and then was awake until 4.50am....fell asleep, had a nightmare or 2 and woke at 5am scared stiff and was then awake until 6am. I didn't have much sleep at all. Even though I slept in, in the morning...it knocked me around that day. Luckily Alan stayed with me that day because I was exhausted and felt very unwell. I ended up going back to bed in the afternoon and sleeping. The next day I slept in until 1130am....I must have been so tired I think!
Well, once again...thanks to the two mums who have helped, the dads who have understood and my lovely husband who is always trying to do what is best for me. I love you.
Bless you all and have a great Thanksgiving.
Love Charisse
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Saturday, November 19, 2005 3:46 AM CST
Hello All,
first of all.....There are NEW PHOTOS AGAIN....Alan and I were reminising tonight about the "old days"! HA! I found some pictures of me at my 19th birthday and Alan and I were dating at the time. Alan and my engagement party and I added a picture at my bridal shower with my mum and I ...I was dressed in a toilet paper wedding gown created by my friends for me...pictures of my brother, Shannon, who also had FA and died in October 1994....he had a transplant that year. Shannon and I were really close and he was a terrific guy...always so happy! Also I have added some photos of Isaac when he was first born and also of him a lot younger than now. Most of you would know he just had his 3rd birthday on the 8th November...so to look back at his photos and remember is wonderful. He was born at 27 weeks gestation and weighed only 2 pound 2 (950 grams). Enjoy the photos...I think I look younger...obviously I am younger!
Anyway, update on me so far. I saw the haematologist this week and he expects that I will take a little longer to recover from this flu bug. I had it severely and I am still trying to build up my strength. The ulcers in my mouth are still bad but improving slowly and he expects them to linger around another 3 weeks considering how sick I have been and how my white cell count dropped from the illness...it should pick up again soon though.
I had my gynae surveillance this week and that went really well....everything looked clear with the coloposcopy and hysteroscopy and I am waiting for the pap smear results.
I had an IVIG infusion yesterday, had my usual reaction, stayed in hospital overnight and now I am home again....still feeling off...but with a positive attitude that I will improve. I know this infusion helps my immunity so I am grateful for it even though I never enjoy staying in hospital.
Well, I am going to go for a small walk to a house in our neighbourhood that has Christmas lights all over....with Isaac and Alan and then I am going to take care of myself again all night, get an early sleep.
Bless you all and will update again soon.
Love Charisse
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Friday, November 11, 2005 2:07 AM CST
Sunday 13th november
**UPDATE**
Well, as I said below..Isaac had his toddler party on Saturday. Below I talk about his family party. NOw I am going to tell you about his toddler party and I need to add some more pictures I think. There are pictures in the photo section of Isaac's parties. It went so well. I was so surprised at how well all the children held out for the party. Isaac was the oldest. All the others were about 2 1/2 years old. Isaac had 4 friends and that was busy enough for me. He opened presents and showed his friends his bike that he got earlier on in the week. They played parce the parcel. That was so cute. These toddlers wanted to keep ripping more than one wrap off and were so excited when they got a gift from it. They all danced on the wiggle's mat and a little African boy was the best "bouncer" so he got a prize. They rode around on their bikes and cars outside, went up and down the slippery slide, tried to catch the bubbles that Alan blew from the toy saxophone. They all loved the train cake that Alan made! Alan did a great job of the train and Isaac was so pleased with himself as the children sang "Happy Birthday"....the kids wanted to sing it twice and Isaac beamed as everyone cheered while he blew out the candle with help from daddy! What a day! The whole party went for about 4 hours and I can say that I was positively exhausted at the end of it. My mum and mother-in-law were there to help...and bless them and Alan...I have still been so lethargic...that they did a lot of the heavy work...thanks to both the mums and Alan. I think I did extremely well considering how unwell I have been. Anyway, so that is some of the excitment. Well, bless you all and have a good week.
Love Charisse
**END**
Good evening,
just a quick update. Isaac's party went so well. He was so cute opening his PRESENTS as he loudly and excitedly exclaimed. His face was comical...he loved his veggie tales DVD's and his new bike, his Bob the Builder torch, Wiggles mat, big tonker truck, book piano and so on....ha....not all from Alan and I....have to remember that there were gifts from Aunties and Uncles, and grandparents and all.....Isaac loved the family party and most of all he loved the BIRTHDAY CAKE!!!! He looked so cute as he stuffed the mud cake in his mouth and then said with a mouth full, "more cake please".....ha ...it was funny. If you read this and the pictures are not on my site yet...I am in the process of getting them on....so give me a little moment.
Also to update.....my dear old toe is still a bit red but looking better...nothing showed up on the x-ray and no arthritis or anything...bloods showed inflammation but that is normal for how red my toe has been....looks like it is getting better...so we are leaving it for now.
On the flu front....I have been "not feeling well". Oh I am much better than last week and my throat is still much better...but at late afternoon and early and late evening I still feel fluey.....I ache and shake and feel real bad. I need to feel well. it is starting to affect me emotionally now. And the last couple of days I have broken out in ulcers, literally, all over my gums ....causing ear pain, headaches, neck pain, gland pain....I feel miserable! My wbc count was only 1.2 which is low for me and neutriphils are at 0.7.....I actually was surprised that they were not lower considering how this flu has knocked me about and all the ulcers I have. I am still so lethargic....tomorrow is Isaac's toddler party and I am still having it. I would be so depressed if I missed it because I am sick...so I need to just pamper myself and take care of myself during it and get lots of sleep tonight. Please pray for me. Please pray that I will get well...I know I will feel better once my immunity is up again. I have an IVIG infusion in one week and that will help in the long run.
Also, think of me next week as I go for my gynae check up that us FA patients do....I have a pap smear, a coloposcopy and a hysteroscopy....pray that they go well. I have it under anaesthetic because they cannot get in there easily......I am a bit different. I have nothing wrong with me...this is just survelliance. Please keep me in prayer.
Love you all,
Charisse
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Monday, November 7, 2005 2:48 AM CST
Hey!
Thanks for the prayers...my throat is MUCH better...I have finished my antibiotics...the liquid stuff and my chest is heaps better as well....I still have a nagging cough but nothing to cough up ....so that is good. The doctor thinks the flu virus is out of my system but I am left with the recovery stage...and with this flu...I have found out that it can take up to 3 weeks for someone to recover from if they are NOT immunosuppressed! I still feel faint and get shaky and hot when I am walking around too much. My energy is very limited but I have managed to keep myself out of bed in the last 2 days...in the afternoon....and just be on the couch! YES!!!
Anyway, so I am hoping, with help, to improve daily...I ahve my mum coming here to help me with Isaac and she is basically caring for me while I haven't got much strength...then back to the usual routine. Thanks mum! Thanks also to Alan's mum who has been coming regularly as well. I appreciate it all!
Tomorrow is ISAAC'S BIRTHDAY!!! He will be THREE!!!! We will do presents at night when Alan is home from work and my family will have tea with us....we will have some snacks and a birthday cake and present opening....should be a relaxed night and I shouldn't have to exert too much energy at all. So Happy birhtday my dear son...you are a credit to your mum and dad!!! Bless you heaps!!!
On Saturday we are having a toddler party. It was planned before I got sick and I cannot cancel it...I will just have to take it easy. I will tell you about that later.
Love you all,
Charisse
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Thursday, November 3, 2005 7:06 PM CST
Hello,
as I said in the last update...I haven't been well. The flu is going around our state at the moment and it is not nice. I have had the flu for 7 days which is viral with a bacterial chest and throat infection. It has been so bad that my throat closed and I couldn't get any fluids or antibiotics down.....so they changed me to liquid antibiotics and I managed to sqeeze that down. My throat is less swollen now and I can actually eat with pain. I still have blocked ears and feel weak, faint and have fevers...however my glands are less swollen.
I am sorry to those who I have not been able to check your websites...I am exhausted and just need time to recover.
I thought that I had been lucky to miss out on this bug while over in America...my brother-in-law had the flu while I was gone and he was SO sick with it...doesn't just make immunosuppressed people really sick.
On Tuesday my son will turn 3 years old. When I am feeling better I will tell you all about it. I am praying that I will feel better by then.....4 sleeps to go.
Bless you all and bye,
Charisse
Monday, October 31, 2005
October 2005 entries
Friday, October 28, 2005 3:56 AM CDT
Hello Family and Friends,
well I hope that you all got to read my important update before this and if you haven't, please go to past journal entries and read it cause it will help you understand my direction with decision making and so forth.
Well, I told you about my past and recent chromosome changes and mentioned that both Alan and I believe that Jesus does not intend for us to go down the road of transplant yet. There has been much discussion with various doctors over this subject and for certain reasons we are going to wait. My blast count is normal under 5nd so far I have everything to live for. Transplant, for certain reasons is not the best option to me right now. And for sprirtual reasons, we strongly do not believe that NOW is the right time. If God changes that then we will look at that. However, I am finding a marrow donor since I actually don't have one. Just in case because Jesus doesn't want me to be unwise....and we feel that this is right. However, transplant is constantly on my mind....and all the emotions that come with FA are constantly in the back of my head.....but I have made decisions 11 years ago not to transplant because of certain reasons that I cannot explain...and I wasn't sure if with this recent change, whether that would change....however, it has not changed and I am praying that the Lord will give me many more years ---- I am believing for healing.
Anyway, when you have something like FA...you are constantly trying to beat battles spiritually and medically. Three years ago we had Isaac, our son and we have an outlook on life...that FA will not get in our way. Jesus has blessed us with a good life and will guide every step taken whether it ends up with a tranplant or not. Remember that Jesus is the head over our lives, not the medical world and that there have been amazing miracles performed by Jesus that the doctors cannot explain....why not with FA....YES!!! I am not disregarding that everything that is going on is not serious. Many of you know how serious I take all of this stuff...and how it affects me emotionally. Our eyes are open wide to the possiblities of what can happen to me with FA and my marrow and everything else that they talk about. However, we are trying not to let that affect our outlook or approach on life. Obviously FA plays a big part in our life, but we don't want it to rule us no matter what happens. That doesn't mean you make silly decisions...all decisions made are made after months and months of deep thought, discussions and consultations and prayer.
Alan and I long for another baby amongst all this and my doctor advices that we do all that now rather than wait...Reason being that if I ever needed to transplant, better to have the baby before than after, and do it while I am well....and I am well....we have been praying about this and feel it is the right direction. You may have questions, "but you have chromosome changes?" "what if you die"....well, yes, I have had chromsome changes for 11 years and I will continue to monitor them and my blast cell...if it goes up above 5..we will need to consider transplant......and I am not focusing on the death...however, I know the reality of FA like you do...and we have thought about that too.....if anything ever happened to me....we would like Isaac to have a sibling - so he can have support rather than be an only child. Alan and I have spoken in depth about all this....and we have gone through it with doctors and counsellors...you never make a decision without consulting everything...I did that even with Isaac.....I am going to live my life happily...and so is my family...so amongst threats and turmoil, there is joy and peace and love... my family, my doctors - they all support me and most of all...we feel what Jesus is telling us.....oh, I am not pregnant - I just wanted to share as an FA adult what issues you do deal with...it is way different to a child.
Now enough of all that deep thinking. Sometimes it makes my head hurt so much because I consider all this so much. My toe....I wrote that my toe was red and sore and has been for a number of weeks. The GP wanted to give me IV antibiotics and they thought it was cellulitis....but I went to Dr. Ben on Monday, my haematologist, and my toe actually has burritis...an infection of the pocket of fluid that lubricates the joint in the toe...that is why I can't move my toe. We are trying 3 weeks of oral antibiotics. I know that IV can be quicker, but for certrain issues we are tyring this first. I have had oral antibiotics for a total of 2 weeks now and my toe actually looks better. The swelling has come down a bit and it is less angry looking. However, Dr. Ben did say that I shouldn't be surprised if it flared up every now and then in the next couple of weeks because it was a very aggressive infection. If we don't get rid of it all, I suppose we can do IV. You see, this month I have dealt with so many feelings considering my brother's death (he had FA)....that I get very depressed in hospital, very depressed.....so we are trying to decrease that time. In Australia, we are very aware of the whole person. The emotional side is deemed just as important as the medical side. So sometimes when you may think "she should be in hospital or have IV"...there are reasons you may not know about as to why I am not. Why do I write and say this....may be this will help people understand what goes on in our brains as patients. Hope all I said doesn't sound judgemental because it is certainly not meant to be. I tend to write exactly how I speak. HA!
It is my brother's 11th year anniversary of his death tomorrow the 29th October....he died in 1994 after a transplant. I love him with all my heart.
To add to my toe, I actually have come down with a flu bug the last 2 days. HA!!! I actually get sick very rarely. But whenever I am really down emotionally, I seem to be more vulnerable. Also, we are trying to balance my IVIG infusions at the moment. They think I am getting too much of a peak with the infusion and then getting low over the 6 weeks too fast......so I will have a blood test to check my levels and they are thinking of decreasing the IgG, but doing it 4 weekly so I have a more even spread and therefore, less vulnerable to infection. Make sense? I know what I mean.....hehe.
Ok, well, that is certainly enough "update". I pray that you are all well and will update again soon.
Bless you all and love you,
Charisse
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Sunday, October 16, 2005 1:22 AM CDT
**New update**
Monday 24th October 2005
Good Morning,
I am going to leave the last update on here still for a while so I know that everyone has had a chance to read it and know what is happening with me.
Please keep me in prayer today. I have an appointment with my haematologist today at the Women's and children's Hospital with Dr Ben. I have been feeling nervous and a bit stressed about this all week...all last week...and I had a "not so good" weekend with depression and anxiety. There are a lot of issues I will be discussing in regards to my marrow.....also I just get uneasy cause it is where I grew up with Fanconi Anaemia..and where my brother died...and it has been 11 years since he died this Friday..so I feel a bit emotional.
Also I have had an infected toe for over a week and it isn't healing. It looks like cellulitis...and they wanted me to have IV antibiotic last week..hehe..but I have been holding out cause I didn't want to go to hospital cause I feel too emotional at the moment..so I have been praying the oral antibiotics will work...ha! My toe it STILL bright red and sore...hmmm..we will see what Dr. Ben has to say about it today.
Anyway, got to go.
Love Charisse
**End of update**
Dear Family and Friends,
As most of you know everyday I face the battle with Fanconi Anaemia, anxeity and depression. Well I am going to share with you something I have not shared before. Somthing that I have not shared because it has been a part of my life for a while and I never thought of sharing it with you guys. Then when something happened this year, it brought it to mind again. Then I felt reluctant to share because I felt like I would be judged by so many families and thought of badly. Some of you may not understand why I have made certain decisions and some of you may think I am stupid and not making the right decisions.....I don't know....it scares me to think of how I am viewed sometimes.....and I am being honest in saying that because that is how I feel. But if I share from my heart, may be you will all understand my position.
Here goes......for the last 10 to 11 years I have had chromosome changes in my marrow. I had my first chromosome changes about 11 years ago. It was a shock back then. We all know that research states that chromosome changes/clones are all likely to eventually lead to leukemia or MDS. Therefore, medical specialists often and most always reccomend a bone marrow transplant early on in the peace while you are well in order to have the best outcome with the bone marrow transplant.
We also know, through research, that chromosome changes/clones will not necessarily lead to leukemia unless the chromosome changes are accompanied with MDS or increased blast count. For those of you who are not aware, there is a certain percentage of dysplasia that deems it to be called MDS and a certain percentage of blast cells that make you leukemic or normal or in the grey area.
Now I have explained this.....so my cytogenetics results 11 years ago revealed my first ever encounter with chromosome changes........but no MDS and all normal blast counts.....my marrow slide was viewed and my marrow is in excellent condition. After talking with family, praying and waiting for an answer from Jesus, we were able to make the decision that transplant was not an option that we wanted to consider right then. This is where I need people to understand that I have made decisions based on so many things in my life.
You see, I am a born-again Christian and believe that Jesus has told me that He is going to heal me completely from FA. This might sound crazy but I believe that He has spoken to me. Not only that, but I have had many pastors who do not know me, or know FA......give a word to me from God concerning my healing that I believe Jesus is gradually completing. I don't know how else to explain such a thing to you than......I believe, I have heard and I will trust no matter what happens..........
Well, I have lived with no consequence to my marrow with chromosome changes for 11 years...Praise God...He has done so many miracles within me......the doctors said I was probably infertile, I fell pregnant within 1 month.......I am married, I am a registered nurse, I have had great counts, I have loved life.......God has done many miracles in my life and I believe that I have beaten odds that they have down on research about FA..........I want you to understand that despite the chromosome changes that I have had over the last 11 years, Jesus has sustained me and I have followed what I know He has told me and He has kept me safe and performed amazing things in my life....not just with FA but emotionally and spiritually. I would be writing a huge essay if I told you about everything God has done.
However, that doesn't stop me from being human. It doesn't stop the tears.......and the sadness and the fear that comes over me sometimes. This year I found out that I had a recent chromosome change. And it broke my heart. I didn't share that I had a recent one because I was so afraid that people would judge me and think I was silly to not throw myself into a transplant. I knew of people who had experienced their child having changes and were now going to transplant and I thought they would think I was an idiot for not going to transplant myself.
You see transplant is a very sore topic for me. My brother died after transplant....I saw all that he went through.....I had a doctor tell me that in 10 years from 1994 this would be me......what a huge, terrible, most destructive thing to say to a child.........that in 10 years that would be me. I will not accept that...even though it has now been 11 years since then...I do not accept that negativity in my life.
Please, I don't want to make anyone cross.......medical staff....doctors, nurses and anyone else are there and are to be used by God to help in the healing process of diseases....but these people also can bring destruction into people's lives through what they say and proclaim over someones' life and that is wrong. I am a nurse myself so I do not believe that I am being judgmental here.......I work with very unwell people who have cancers and stuff..............
I do not think transplant is wrong.......It scares me to death!!! HA!!!! But I know that my Jesus has spoken to me and I feel and know and have always thought that transplant is not for me and that my Jesus will heal me.
Going back to my recent chromosome changes......I was shocked and I am still very shocked and scared. This has been a huge battle for me the last 3 months especially. The good thing is that my marrow is not MDS or leukemic. I have slight dysplasia which is so normal for an adult with FA. But it is not MDS at all. My blast count is under 5.....and that is normal......so I am not leukemic. The doctor said that he is amazed by my marrow. He told me that my marrow is in great condition still and that the cells are very efficient...there is no sign of aplastic anaemia........it is not leukemic....but he is concerned that my marrow has withstood so many changes...he is concerned about when it will start to complain about these changes.....and he means by that...when will the dysplasia go out of control, the blast count rise....but they can't tell you that. Because of my huge, emotional issues and anxiety they are concerned about me having a transplant because they do not want my emotional health to be soooo scarred. And that can happen. A person may have a transplant, but if they experience so much emotional stress during that, the person can go down hill. I have issues with doctors examining me...huge issues that I can't go into...huge things that make me collapse when I am confronting it...I have a physchologist to work through all this but it is huge...........I get concerned that you may read this and think.....but you are silly, you need to have a transplant............and then I remember at camp, Mrs Frohmeyer, I hope you don't mind....but when there was a discussion about transplant and there were parents questioning what was right for a child.......you mentioned that one thing that is right for a child, may not be necessarily right for another...and that there are circumstances that will make a person decide if transplant is right or not............and I totally agree..........there are circumstances that people would not even know about that make us choose the decisions we choose and no one can judge.
Now I was alarmed by this recent change.....I was alarmed heaps.....so I understand how you want to kick and scream and feel so much dread when a change happens......the thing is that now my platelet count has dropped......I usually sit around 115 000 consistently and I became very alarmed the last couple of months....last 4 months or so that it has been dropping...oh it dropped to 60 000 one week.....and I freaked.....it then went back to 90 000 and then 70 000 and then 60 000.......you see this is totally NOT me....I am not under 100 000 at all usually and so I have been concerned. I know that the doctor said to me that the other way that you can see chromosome changes having an affect on the marrow is a decrease in platelet count. So you can imagine how I have been feeling....."oh, no"....but then it is too early to tell...there could be other reasons for this...but it is still scary.
However, I still cannot deny my Lord. I still cannot deny the voice that tugs at my heart telling me that "what healing has begun will be made complete"..........I do believe so strongly that Jesus has spoken to me and that He will heal me and I cannot deny that. Oh, I feel very upset and have been very depressed lately but I cannot turn away from the fact that Jesus is faithful and when He promises something He always fulfills it. Jesus never promises and then doesn't fulfill.... The Bible says that Jesus will always fulfill what He has told us. I have no problem with that. When I start to be afraid and panic and think, "oh no, it is not going to happen", I call out to Jesus and remind Him that He has promised me healing and can He please show me, give me insight because I am scared. This moring I was feeling a bit scared and then my mother sent me a verse from Ephesians chapter 3 verse 20
"To Him who by means of His power working in us is able to do so much more than we can ever ask for, or even think of: To God be the Glory in the church and in Christ Jesus for all time, for ever and ever! Amen"
Alan and I are not being unwise. Just because we believe that Jesus will heal me completely does not mean that we turn a blind eye. Jesus never wants us to be unwise but to use wisdom. So we are prepared to go to transplant if Jesus tells us to do that eventually. We will have everything planned just in case....but we will never go to transplant unless we know that Jesus is leading us that way. I do get scared and think, this is it......but Jesus is bigger than FA. Jesus is bigger than statistics and He can heal whenever He wants to. Some people are healed immediately and others are healed in God's time.....we don't know why........so I am asking you that you don't place me with the FA statistics but that you join together with me in fighting this disorder because I know that nothing is impossible for God....I know Jesus is faithful and always carries out His promise and I know He has spoken to me.....I have no idea why this is happening and why...but I have to trust God.....it is very hard to do but when I talk about it I cannot stop telling you about how I know this and that Jesus is bigger than FA.
Please understand that I do have times, lots if times when I feel grief over FA and what can happen....but Jesus does have more power and I always feels empowered when I lean on Him.
He is in control.
Love Charisse
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Sunday, October 2, 2005 3:49 AM CDT
***UPDATE Sunday the 9th October***
Hello, thanks to all of you who check on me and pray for me. I have been having a hard time at the moment. Yesterday, in the morning I even wrote to my friend saying I was feeling positive and unfortunately the rest of my day was a mess and I was so depressed that I was crying and crying. So, Alan and I asked my sister and her husband to babysit Isaac while Alan and I went out for tea last night and caught a movie as well. We really needed some time together. It has been a hard week and when you feel depressed, and Alan had been interstate a short while, I felt like the pressure had been on and needed a break. It is so hard to function properly when you feel this way...and depressed.
Well, I went to church today and Jesus is one Almighty God. He is awesome. Since I was in the USA back in August I really feel like Jesus has been speaking to me about a few things.....I feel very humbled before God. We as human beings do not deserve His grace and mercy.....I do not deserve His grace and mercy but because Jesus loves me, He has been merciful and shown me grace in so many ways. Firstly, I have accepted Jesus and He has given me salvation and saved me....I did that when I was 5 and have never regretted it. That is the first amount of grace and love He has shown me. Then as I recall how upset I get and sometimes angry with those around me and myself when I am severely depressed I think about how I don't deserve His grace, mery and love, but He gives it anyway and forgives me of everything. I sat there, today, in church, listening to the worship, listening to God's Word and felt great love and gratefulness towards Jesus. And I just thanked Him and the tears just flowed and flowed. I took communion and realised, again, how great a sacrifice He has done for me and I cried and felt so humbled before Him. You know the Bible says in Romans chapter 3 verse 23, "For all have sinned and fall short of the Glory of God".......we have all sinned, we all don't deserve His grace and mercy but because He loves us, He gives of it freely. That is awesome. I would never survive if I didn't have Jesus. I am so grateful to those who help me when I am having a hard time and when I get grumpy because I am depressed and not coping too well. lots of you have to endure a lot and I am both sorry and grateful for you having to do that. So, if you read this and you are one of those people. Thank you. I publically thank you from the bottom of my heart and have been reminded today, of how precious grace and mercy really is to me. Thank you.
Please still keep praying for me on this walk of faith. I am believing that Jesus will heal me of fanconi anaemia and depression. I am learning a lot on this walk of faith but it is so hard and sometimes I feel so pulled under that I need others to hold me up. So please keep praying.
Love you all,
Charisse
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Sunday October 2nd
Most of you know that I suffer from
anxiety and depression on and off.
I had a hard time last weekend cause I was so tired and I thought I was improving but this weekend I am feeling so sad and depressed.
I really need your prayers so I start to feel better about myself. When it comes down to this I find it so hard to explain how I am feeling and I use my techniques to help my thought processes but sometimes, when you are depressed it is so hard to lift it.
God is great.......I don't deny that at all. I think I am having a down period again and need help to be lifted out if it. It happens every now and then.
Hope you are all doing fine.
Love Charisse
Hello Family and Friends,
well I hope that you all got to read my important update before this and if you haven't, please go to past journal entries and read it cause it will help you understand my direction with decision making and so forth.
Well, I told you about my past and recent chromosome changes and mentioned that both Alan and I believe that Jesus does not intend for us to go down the road of transplant yet. There has been much discussion with various doctors over this subject and for certain reasons we are going to wait. My blast count is normal under 5nd so far I have everything to live for. Transplant, for certain reasons is not the best option to me right now. And for sprirtual reasons, we strongly do not believe that NOW is the right time. If God changes that then we will look at that. However, I am finding a marrow donor since I actually don't have one. Just in case because Jesus doesn't want me to be unwise....and we feel that this is right. However, transplant is constantly on my mind....and all the emotions that come with FA are constantly in the back of my head.....but I have made decisions 11 years ago not to transplant because of certain reasons that I cannot explain...and I wasn't sure if with this recent change, whether that would change....however, it has not changed and I am praying that the Lord will give me many more years ---- I am believing for healing.
Anyway, when you have something like FA...you are constantly trying to beat battles spiritually and medically. Three years ago we had Isaac, our son and we have an outlook on life...that FA will not get in our way. Jesus has blessed us with a good life and will guide every step taken whether it ends up with a tranplant or not. Remember that Jesus is the head over our lives, not the medical world and that there have been amazing miracles performed by Jesus that the doctors cannot explain....why not with FA....YES!!! I am not disregarding that everything that is going on is not serious. Many of you know how serious I take all of this stuff...and how it affects me emotionally. Our eyes are open wide to the possiblities of what can happen to me with FA and my marrow and everything else that they talk about. However, we are trying not to let that affect our outlook or approach on life. Obviously FA plays a big part in our life, but we don't want it to rule us no matter what happens. That doesn't mean you make silly decisions...all decisions made are made after months and months of deep thought, discussions and consultations and prayer.
Alan and I long for another baby amongst all this and my doctor advices that we do all that now rather than wait...Reason being that if I ever needed to transplant, better to have the baby before than after, and do it while I am well....and I am well....we have been praying about this and feel it is the right direction. You may have questions, "but you have chromosome changes?" "what if you die"....well, yes, I have had chromsome changes for 11 years and I will continue to monitor them and my blast cell...if it goes up above 5..we will need to consider transplant......and I am not focusing on the death...however, I know the reality of FA like you do...and we have thought about that too.....if anything ever happened to me....we would like Isaac to have a sibling - so he can have support rather than be an only child. Alan and I have spoken in depth about all this....and we have gone through it with doctors and counsellors...you never make a decision without consulting everything...I did that even with Isaac.....I am going to live my life happily...and so is my family...so amongst threats and turmoil, there is joy and peace and love... my family, my doctors - they all support me and most of all...we feel what Jesus is telling us.....oh, I am not pregnant - I just wanted to share as an FA adult what issues you do deal with...it is way different to a child.
Now enough of all that deep thinking. Sometimes it makes my head hurt so much because I consider all this so much. My toe....I wrote that my toe was red and sore and has been for a number of weeks. The GP wanted to give me IV antibiotics and they thought it was cellulitis....but I went to Dr. Ben on Monday, my haematologist, and my toe actually has burritis...an infection of the pocket of fluid that lubricates the joint in the toe...that is why I can't move my toe. We are trying 3 weeks of oral antibiotics. I know that IV can be quicker, but for certrain issues we are tyring this first. I have had oral antibiotics for a total of 2 weeks now and my toe actually looks better. The swelling has come down a bit and it is less angry looking. However, Dr. Ben did say that I shouldn't be surprised if it flared up every now and then in the next couple of weeks because it was a very aggressive infection. If we don't get rid of it all, I suppose we can do IV. You see, this month I have dealt with so many feelings considering my brother's death (he had FA)....that I get very depressed in hospital, very depressed.....so we are trying to decrease that time. In Australia, we are very aware of the whole person. The emotional side is deemed just as important as the medical side. So sometimes when you may think "she should be in hospital or have IV"...there are reasons you may not know about as to why I am not. Why do I write and say this....may be this will help people understand what goes on in our brains as patients. Hope all I said doesn't sound judgemental because it is certainly not meant to be. I tend to write exactly how I speak. HA!
It is my brother's 11th year anniversary of his death tomorrow the 29th October....he died in 1994 after a transplant. I love him with all my heart.
To add to my toe, I actually have come down with a flu bug the last 2 days. HA!!! I actually get sick very rarely. But whenever I am really down emotionally, I seem to be more vulnerable. Also, we are trying to balance my IVIG infusions at the moment. They think I am getting too much of a peak with the infusion and then getting low over the 6 weeks too fast......so I will have a blood test to check my levels and they are thinking of decreasing the IgG, but doing it 4 weekly so I have a more even spread and therefore, less vulnerable to infection. Make sense? I know what I mean.....hehe.
Ok, well, that is certainly enough "update". I pray that you are all well and will update again soon.
Bless you all and love you,
Charisse
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Sunday, October 16, 2005 1:22 AM CDT
**New update**
Monday 24th October 2005
Good Morning,
I am going to leave the last update on here still for a while so I know that everyone has had a chance to read it and know what is happening with me.
Please keep me in prayer today. I have an appointment with my haematologist today at the Women's and children's Hospital with Dr Ben. I have been feeling nervous and a bit stressed about this all week...all last week...and I had a "not so good" weekend with depression and anxiety. There are a lot of issues I will be discussing in regards to my marrow.....also I just get uneasy cause it is where I grew up with Fanconi Anaemia..and where my brother died...and it has been 11 years since he died this Friday..so I feel a bit emotional.
Also I have had an infected toe for over a week and it isn't healing. It looks like cellulitis...and they wanted me to have IV antibiotic last week..hehe..but I have been holding out cause I didn't want to go to hospital cause I feel too emotional at the moment..so I have been praying the oral antibiotics will work...ha! My toe it STILL bright red and sore...hmmm..we will see what Dr. Ben has to say about it today.
Anyway, got to go.
Love Charisse
**End of update**
Dear Family and Friends,
As most of you know everyday I face the battle with Fanconi Anaemia, anxeity and depression. Well I am going to share with you something I have not shared before. Somthing that I have not shared because it has been a part of my life for a while and I never thought of sharing it with you guys. Then when something happened this year, it brought it to mind again. Then I felt reluctant to share because I felt like I would be judged by so many families and thought of badly. Some of you may not understand why I have made certain decisions and some of you may think I am stupid and not making the right decisions.....I don't know....it scares me to think of how I am viewed sometimes.....and I am being honest in saying that because that is how I feel. But if I share from my heart, may be you will all understand my position.
Here goes......for the last 10 to 11 years I have had chromosome changes in my marrow. I had my first chromosome changes about 11 years ago. It was a shock back then. We all know that research states that chromosome changes/clones are all likely to eventually lead to leukemia or MDS. Therefore, medical specialists often and most always reccomend a bone marrow transplant early on in the peace while you are well in order to have the best outcome with the bone marrow transplant.
We also know, through research, that chromosome changes/clones will not necessarily lead to leukemia unless the chromosome changes are accompanied with MDS or increased blast count. For those of you who are not aware, there is a certain percentage of dysplasia that deems it to be called MDS and a certain percentage of blast cells that make you leukemic or normal or in the grey area.
Now I have explained this.....so my cytogenetics results 11 years ago revealed my first ever encounter with chromosome changes........but no MDS and all normal blast counts.....my marrow slide was viewed and my marrow is in excellent condition. After talking with family, praying and waiting for an answer from Jesus, we were able to make the decision that transplant was not an option that we wanted to consider right then. This is where I need people to understand that I have made decisions based on so many things in my life.
You see, I am a born-again Christian and believe that Jesus has told me that He is going to heal me completely from FA. This might sound crazy but I believe that He has spoken to me. Not only that, but I have had many pastors who do not know me, or know FA......give a word to me from God concerning my healing that I believe Jesus is gradually completing. I don't know how else to explain such a thing to you than......I believe, I have heard and I will trust no matter what happens..........
Well, I have lived with no consequence to my marrow with chromosome changes for 11 years...Praise God...He has done so many miracles within me......the doctors said I was probably infertile, I fell pregnant within 1 month.......I am married, I am a registered nurse, I have had great counts, I have loved life.......God has done many miracles in my life and I believe that I have beaten odds that they have down on research about FA..........I want you to understand that despite the chromosome changes that I have had over the last 11 years, Jesus has sustained me and I have followed what I know He has told me and He has kept me safe and performed amazing things in my life....not just with FA but emotionally and spiritually. I would be writing a huge essay if I told you about everything God has done.
However, that doesn't stop me from being human. It doesn't stop the tears.......and the sadness and the fear that comes over me sometimes. This year I found out that I had a recent chromosome change. And it broke my heart. I didn't share that I had a recent one because I was so afraid that people would judge me and think I was silly to not throw myself into a transplant. I knew of people who had experienced their child having changes and were now going to transplant and I thought they would think I was an idiot for not going to transplant myself.
You see transplant is a very sore topic for me. My brother died after transplant....I saw all that he went through.....I had a doctor tell me that in 10 years from 1994 this would be me......what a huge, terrible, most destructive thing to say to a child.........that in 10 years that would be me. I will not accept that...even though it has now been 11 years since then...I do not accept that negativity in my life.
Please, I don't want to make anyone cross.......medical staff....doctors, nurses and anyone else are there and are to be used by God to help in the healing process of diseases....but these people also can bring destruction into people's lives through what they say and proclaim over someones' life and that is wrong. I am a nurse myself so I do not believe that I am being judgmental here.......I work with very unwell people who have cancers and stuff..............
I do not think transplant is wrong.......It scares me to death!!! HA!!!! But I know that my Jesus has spoken to me and I feel and know and have always thought that transplant is not for me and that my Jesus will heal me.
Going back to my recent chromosome changes......I was shocked and I am still very shocked and scared. This has been a huge battle for me the last 3 months especially. The good thing is that my marrow is not MDS or leukemic. I have slight dysplasia which is so normal for an adult with FA. But it is not MDS at all. My blast count is under 5.....and that is normal......so I am not leukemic. The doctor said that he is amazed by my marrow. He told me that my marrow is in great condition still and that the cells are very efficient...there is no sign of aplastic anaemia........it is not leukemic....but he is concerned that my marrow has withstood so many changes...he is concerned about when it will start to complain about these changes.....and he means by that...when will the dysplasia go out of control, the blast count rise....but they can't tell you that. Because of my huge, emotional issues and anxiety they are concerned about me having a transplant because they do not want my emotional health to be soooo scarred. And that can happen. A person may have a transplant, but if they experience so much emotional stress during that, the person can go down hill. I have issues with doctors examining me...huge issues that I can't go into...huge things that make me collapse when I am confronting it...I have a physchologist to work through all this but it is huge...........I get concerned that you may read this and think.....but you are silly, you need to have a transplant............and then I remember at camp, Mrs Frohmeyer, I hope you don't mind....but when there was a discussion about transplant and there were parents questioning what was right for a child.......you mentioned that one thing that is right for a child, may not be necessarily right for another...and that there are circumstances that will make a person decide if transplant is right or not............and I totally agree..........there are circumstances that people would not even know about that make us choose the decisions we choose and no one can judge.
Now I was alarmed by this recent change.....I was alarmed heaps.....so I understand how you want to kick and scream and feel so much dread when a change happens......the thing is that now my platelet count has dropped......I usually sit around 115 000 consistently and I became very alarmed the last couple of months....last 4 months or so that it has been dropping...oh it dropped to 60 000 one week.....and I freaked.....it then went back to 90 000 and then 70 000 and then 60 000.......you see this is totally NOT me....I am not under 100 000 at all usually and so I have been concerned. I know that the doctor said to me that the other way that you can see chromosome changes having an affect on the marrow is a decrease in platelet count. So you can imagine how I have been feeling....."oh, no"....but then it is too early to tell...there could be other reasons for this...but it is still scary.
However, I still cannot deny my Lord. I still cannot deny the voice that tugs at my heart telling me that "what healing has begun will be made complete"..........I do believe so strongly that Jesus has spoken to me and that He will heal me and I cannot deny that. Oh, I feel very upset and have been very depressed lately but I cannot turn away from the fact that Jesus is faithful and when He promises something He always fulfills it. Jesus never promises and then doesn't fulfill.... The Bible says that Jesus will always fulfill what He has told us. I have no problem with that. When I start to be afraid and panic and think, "oh no, it is not going to happen", I call out to Jesus and remind Him that He has promised me healing and can He please show me, give me insight because I am scared. This moring I was feeling a bit scared and then my mother sent me a verse from Ephesians chapter 3 verse 20
"To Him who by means of His power working in us is able to do so much more than we can ever ask for, or even think of: To God be the Glory in the church and in Christ Jesus for all time, for ever and ever! Amen"
Alan and I are not being unwise. Just because we believe that Jesus will heal me completely does not mean that we turn a blind eye. Jesus never wants us to be unwise but to use wisdom. So we are prepared to go to transplant if Jesus tells us to do that eventually. We will have everything planned just in case....but we will never go to transplant unless we know that Jesus is leading us that way. I do get scared and think, this is it......but Jesus is bigger than FA. Jesus is bigger than statistics and He can heal whenever He wants to. Some people are healed immediately and others are healed in God's time.....we don't know why........so I am asking you that you don't place me with the FA statistics but that you join together with me in fighting this disorder because I know that nothing is impossible for God....I know Jesus is faithful and always carries out His promise and I know He has spoken to me.....I have no idea why this is happening and why...but I have to trust God.....it is very hard to do but when I talk about it I cannot stop telling you about how I know this and that Jesus is bigger than FA.
Please understand that I do have times, lots if times when I feel grief over FA and what can happen....but Jesus does have more power and I always feels empowered when I lean on Him.
He is in control.
Love Charisse
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Sunday, October 2, 2005 3:49 AM CDT
***UPDATE Sunday the 9th October***
Hello, thanks to all of you who check on me and pray for me. I have been having a hard time at the moment. Yesterday, in the morning I even wrote to my friend saying I was feeling positive and unfortunately the rest of my day was a mess and I was so depressed that I was crying and crying. So, Alan and I asked my sister and her husband to babysit Isaac while Alan and I went out for tea last night and caught a movie as well. We really needed some time together. It has been a hard week and when you feel depressed, and Alan had been interstate a short while, I felt like the pressure had been on and needed a break. It is so hard to function properly when you feel this way...and depressed.
Well, I went to church today and Jesus is one Almighty God. He is awesome. Since I was in the USA back in August I really feel like Jesus has been speaking to me about a few things.....I feel very humbled before God. We as human beings do not deserve His grace and mercy.....I do not deserve His grace and mercy but because Jesus loves me, He has been merciful and shown me grace in so many ways. Firstly, I have accepted Jesus and He has given me salvation and saved me....I did that when I was 5 and have never regretted it. That is the first amount of grace and love He has shown me. Then as I recall how upset I get and sometimes angry with those around me and myself when I am severely depressed I think about how I don't deserve His grace, mery and love, but He gives it anyway and forgives me of everything. I sat there, today, in church, listening to the worship, listening to God's Word and felt great love and gratefulness towards Jesus. And I just thanked Him and the tears just flowed and flowed. I took communion and realised, again, how great a sacrifice He has done for me and I cried and felt so humbled before Him. You know the Bible says in Romans chapter 3 verse 23, "For all have sinned and fall short of the Glory of God".......we have all sinned, we all don't deserve His grace and mercy but because He loves us, He gives of it freely. That is awesome. I would never survive if I didn't have Jesus. I am so grateful to those who help me when I am having a hard time and when I get grumpy because I am depressed and not coping too well. lots of you have to endure a lot and I am both sorry and grateful for you having to do that. So, if you read this and you are one of those people. Thank you. I publically thank you from the bottom of my heart and have been reminded today, of how precious grace and mercy really is to me. Thank you.
Please still keep praying for me on this walk of faith. I am believing that Jesus will heal me of fanconi anaemia and depression. I am learning a lot on this walk of faith but it is so hard and sometimes I feel so pulled under that I need others to hold me up. So please keep praying.
Love you all,
Charisse
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Sunday October 2nd
Most of you know that I suffer from
anxiety and depression on and off.
I had a hard time last weekend cause I was so tired and I thought I was improving but this weekend I am feeling so sad and depressed.
I really need your prayers so I start to feel better about myself. When it comes down to this I find it so hard to explain how I am feeling and I use my techniques to help my thought processes but sometimes, when you are depressed it is so hard to lift it.
God is great.......I don't deny that at all. I think I am having a down period again and need help to be lifted out if it. It happens every now and then.
Hope you are all doing fine.
Love Charisse
Friday, September 30, 2005
September 2005 entries
Wednesday, September 28, 2005 7:11 AM CDT
It is Wednesday night and I am feeling improved compared with the other day. Tuesday my mum came and looked after Isaac and I had a sleep in and then today I was back on my own again but in a better state of mind. I still feel tired but I am getting there. I just have to make sure I get to bed early.
So today we had kindergym and Isaac loved it. He ran everywhere and climbed on all the equipment.
Then I went to a friend's house and she has a 2 1/2 year old and Isaac and him played together. They wrestled!!! It was Soooooooooo cute! They were laughing and pulling each other down and stuff....Isaac really needed the interaction! Then I came home and Isaac had a sleep while I did things around the house, emailed and read my Bible.
It was a good day. So now I need to get off to bed! I need to make sure I am relaxed.....please still keep my emotional health and physical health in your prayers.
Lots of love,
Charisse
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Sunday, September 25, 2005 11:54 PM CDT
Well, it is Monday and I don't feel like it has been the best day. It is Monday here in Australia at 2.30pm. I just was never able to recover from the sleepless night on Friday night and so Sunday, I was so nauseated...I had to miss church...Alan and Isaac still went...and today I woke up and felt so unwell and tired that I had to ring mum and dad up and get them to take Isaac for the day.
I lay on my bed all morning and couldn't stop the tears. I felt so bad that I had to send Isaac off with my parents. He has been just wanting me all the time but he seemed happy to go with them.
I am still in my PJ's......I just need to feel good again.
Thanks to my friends who have chatted with me over the phone or any other way.....who have helped me feel better. Thanks to Alan, my husband, for being patient with me when I am crying on the phone...my anxiety sometimes rears its ugly head and then it just flows out!
So I am going to have a bath and feel better....but I still feel so unwell and so guilty about feeling this way. I hope Isaac would not be cross at me about it. I love him very much....and I wish I could stop crying. Boy, I hope my week gets better.
Bless you and love you,
Charisse
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Friday, September 23, 2005 9:46 PM CDT
Good Afternoon,
well just a short update to let you know how life is going.
My mouth ulcer that Dr. Ben looked at...he gave it 2 weeks to heal and then we were going to biopsy it.....well it is healed and gone!! Praise the Lord!
Another thing to rejoice over...well for us anyway. Isaac has begun toilet training the last 2 weeks and last night was the first time he ever has done a poo in the potty! I wasn't there...but Alan was. He sat on the potty....and did a poo! When he got off the potty he was scared of the poo and started screaming and yelling, looking at the potty freaked out and all. He was rewarded with praise and his favourite muslie bar! I will use stickers more now...thanks to the person who mentioned that idea....was it Sandra? Anyway, he is a bit scared of the potty now but that is ok because he will get better again. Doing a poo in the potty can be kind of scary for a child.
Yesterday I worked an 8 1/2 hour shift at the hospital. I was in day surgery and I really enjoyed my shift. I usually do most of my shifts in Theater Recovery. It was so busy and I was on my feet all day. I worked from 11am to 7.30pm.. Usually around 6pm my body says, "I am tired and switching off". Well, I suddenly felt tired at that time but I managed to push myself. I don't do night shifts because my stamina can't manage it. But I was very happy with my shift....some interesting things happened but they are confidential.
I had a bad sleep last night though. I got home from work and we did devotions with Isaac and he went to bed. I went to bed around 10pm and turned the light off at 10.30pm. I had high anxiety for some reason and my mind started to have very clear visions of the women's and children's hospital where I go to see Dr. Ben (also where Shannon died). I started to get heart palpitations and breathing difficulties and my mind rehearsed me having a full on anxiety attack and so I tried to stop my mind and focus on other things. At 1am I woke Alan and he tried to relax me by rubbing my legs.....I then continued to try and sleep but by 3pm I woke Alan again and then all my anxiety came out. we were up until 5am with all my anxiety. I am very tired today. Please continue to pray that the things causing me grief will get worked out.
Ok well I need to go. I have a 1 year old birthday party to go to with Alan and Isaac.
Bless you all and bye,
Charisse
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Sunday, September 18, 2005 11:44 PM CDT
What a day! It is just an ordinary Monday but I haven't enjoyed my day much at all. Isaac is toilet training. He is a good boy. We have only been trying it for a week. So he is only into the stage of learning to sit on the potty without being frightened. I am sure that I have annoyed him today and he has annoyed me. I love my dear darling of course. He has done well to be less afraid today. I try and make it fun! Hehe!
Hehe...I feel grumpy today...well I have felt grumpy the last week...not because of Isaac but because of certain truths that a woman must endure....and I am sure Isaac looks at me and thinks, "what's up with you mum?" and then tries and makes things a bit more difficult for me in everyway.
He is getting restless with the rainy days and wants to get outside and play. It is just not possible today...so we played lego. He is in bed now and I think I will rest too after this.
Yesterday at church was wonderful. We had a visiting Pastor speak at the church. His name is Peter Franz. He ministers in Uganda and other regions of Africa. My church is 90 frican here in Australia and so they enjoyed having him here to speak. He has been blessed with a healing annointing from the Lord and so when he asked for people with "blood disorders" to come up for healing I marched right on up. I sure do believe in the power of the Holy Spirit to heal the sick and I wasn't going to miss out. I felt such a humbling before Jesus and kept thanking Him and thanking Him. I had an amazing time with God. I truly can feel His presence greater these days and I would never want to be without Jesus...and I am trusting Him for the healing of FA throughout my body. I know Jesus can heal. I have seen Jesus heal people with AIDS in front of me and I have witnessed them show their before and after medical tests....God is truly amazing and I trust Him with my life.
So please know that there are specific people I am praying for and have on my heart....I will remember you in prayer. With God nothing is impossible.
All right, well, I am now going to go. I pray that you will all have a great week.
Love Charisse
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Wednesday, September 14, 2005 4:36 AM CDT
Good Evening,
Well, I actually did quite well in my appointment with Dr. Ben. I have had a nasty ulcer in my mouth for 2 weeks. It started when I changed toothbrushes and my gums were irritated and it got so big I was a bit concerned about it. So I let Dr. Ben have a look and he thinks it looks like an ordinary ulcer and explained what potential canerous ones usually look like. He gave it 2 weeks to heal and if it isn't healed then we will do a biopsy to check for what infection it could be and of course, that always rules out cancer as well. But since Monday, my ulcer is smaller and not as sore and is healing up. So I am pleased about that and I am being real careful as I brush my teeth so I don't re-open to ulcer and let it heal.
I was able to finally talk to Dr. Ben concerning some other issues as well to do with the gynae. I had never told anyone and after hearing the gnae lecture at camp sunshine I suddenly thought about my issue and realised that after years of enduring such a thing it could have probably been fixed....Dr. Ben was very accomadating and will speak to my gynae doctor about it and may be we can help my issue.
I was disappointed that my platelets are jumping around a bit. I always feel uneasy about all that......but platelets do tend to jump around a lot, especially if you are doing 6 weekly blood tests with the IVIG infusion I have. When I used to have bloods every 4 to 6 months, you wouldn't see the jumps that the platelet count does and you never would have known. Every thing else is about the same. I was pleased with my cholestrol....I have had a cheese craving lately and have been crazy with cheeses...hehe...glad my cholesterol is till well within normal levels.
I still found going to the Women's and Children's very hard but Isaac was with me and amused me heaps....even though I had a lot of anxiety I did well. Dr. Ben asked me if I would be able to try coming to the clinic in Ronald McDonald House instead of the ward...I said I didn't know...I felt a bit panicked about it actually...so I will let him know...another thing to overcome.
There are still issues I am dealing with in relation to FA. Please keep praying for me. I think we will always be dealing with issues but this one is a big one.....and as I have said before, feels big and overwhelming for me, but nothing is ever impossible with Jesus or too big for Him.....so I will continue to trust in Jesus. I am desperately asking the Lord on certain subjects at the moment and I know He hears me. God's grace never fails.
Donna and Nicholas...I am thinking about you guys as you try the oxymethalone. I pray that this drug is a wonder drug for you as it was for me.
Ok, well life goes on. Isaac is busy trying to get my attention so I am going to go.
Bless you all and good night.
Love Charisse
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Sunday, September 11, 2005 8:53 PM CDT
Hi Everyone,
today is Monday for me. I have an appointment with Dr. Ben today. I actually thought on the weekend, "wow I feel ok about my appointment" and then something happened and I have been in tears about FA stuff and my appointment today. Once again I have felt extreme anxiety prior to my appointment and it is hard to hold the tears in.
My brother is very close to my heart at the moment. We just celebrated his birthday recently and he would have been 25 years old had he still been alive. I went to his gravesite and broke down in tears. I feel it so strongly...the hurt and love I have for him and the grief that I then realised, once again, that I am dealing with.
So it is off to the Women's and Children's hospital again today for my appointment and I feel broken as I go facing the hospital where so many things took place. How much longer will I feel this way?
There are so many issues to address with my appointment today. We will address certain issues from the FA Camp.
I just don't like going to the doctor who facing certain things, talking about stuff.
Anway, Jesus is with me all the time and so I will walk with confidence. I know that Jesus is doing a healing work in my marrow and whole body with FA all the time. I will continue to trust in Him even though I sometimes feel sad.
I pray that you are all having a good day or night.
Bless you and talk soon,
Love Charisse
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Thursday, September 8, 2005 5:46 AM CDT
Well, I have shared about camp but not about our time in Oregon with the Cliftons.
It was a relief to not have to fly to Australia the week after camp. I don't think I would have handled such a long flight...so we just went 8 hours across the country to Portland, Oregon. We stayed in a hotel in Aloha. We holidayed with Teresa, Tyler and Emma Clifton. It was good. The first day we just slept in and then went to their house and left on a short drive to see the scenery. The greenery was beautiful. It was so green. In Australia it is not so green, especially in the summer time. So I was fascinated by the trees and how lush it was.
The second day Alan and Tyler went shooting at a gun ranch and I stayed with Teresa at her appartment. We had Emma and Isaac with us and we just took it easy. After a huge week at camp it was nice to go slow. We went to the park and the kids played. They played so nicely together. They had to copy each other. At the park they sat on a swing together and laughed as they were pushed. Isaac loved the company!
Later that day Teresa, Tyler and Emma took us to see Emma's hospital and the huge air bridge that it has. I can't remember whether I have put photos of that on the website but the hospital has a beautiful view on the mountain and I was fascinated by how children friendly the hospital was...hehe..now it is a children's hospital so you ask me why was I surpirsed? Our major children's hospital in Adelaide is more medical looking and I think the set up at this American hospital was great....I am also a nurse and love other country's hospitals.
We also went on a day's long outing to see Mt St Helens in Washington State....that was excellent and you can see the mountain in the pictures I have postered here. It is an active volcano and it had steam coming out of the top. I could smell the supha and feel the heat from it. we drove to the furtherist lookout. We were so close to it. I then saw a show on this volcano back in Australia and was pretty pleased to announce that I had been there in person. Hehe.
We went to Oregon zoo...what a cool zoo....and even cooler than ours here in Adelaide. I liked the marine creatures and bears because you got to see them in an aquarium type setting as well as from the top on the outside. That fasinated me....that is where we got the pictures of the seal lions...if I have posted them that is.
And...we saw the fabulous waterfalls....they were great and so huge. I bought some things from there for my famliy. I think there are some photos of them on this site. That was lovely...and then we visited with Rachel Altmann and Nina who has FA (she is 2 I think....HI Rachel, Nina, Benjamin and Tyler). We had a great time there. I loved their house...wow!! We haven't got houses like that where we live! It was so nice spending more time with you Rachel. You are a lovely person.
Oh, Rachel, Benjamin and Nina also came with us to the zoo that time.
Every night we were taken to a different restaurant to get a taste of the variety of food in America. We went to Chinese, Mexican, Italian, had pizza...even the pizza taste different! Teresa cooked for us a couple of nights and she is a great cook!
A good time was had by all and it was a shame when we had to leave. We only could stay a week and then we were flying home again (only to accidently leave our hand luggage with sercurity and realise last minute and almost missed our flight..hehe).
Anyway, once again i have chatted too much. So I am going to go and relax.
Bless you all,
Love Charisse
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Sunday, September 4, 2005 6:07 AM CDT
Hi Everyone,
sorry about the lack of updates since I have been back from America. I have only been back one week and I have been so busy catching up on everything.
I just put Isaac to bed so I think I have time to chat now for a while.
First of all, our 2 weeks in America, the first in Cascoe Maine and then Portland, Oregon....were both good weeks.
As per usual, excitement tends to follow Alan and I around so the excitement and adventures of what lay ahead started as soon as we left Adelaide airport.
Isaac still enjoys bottles with milk in it...not to carry around but only to enjoy with his breakfast,lunch and tea. If you forget these bottles, he will often get upset so they were very important to Alan and I. Already our dramas began when we arrived from Adelaide to Sydney in Australia on the way to America. We got off the plane to board onto the international flight to LA and realised that we had left Isaac's bottle bag with his bottles in the previous plane. Poor Alan ran so fast to go and get the bag...of which we did get hold of. Our Adelaide flight was running late and so we were late getting on the plane for LA. As we were fumbling onto the plane I asked for some help and the air hostess said, "what's wrong with you?". I was shocked! I had never had an air hostess ask me such a ridiculous question before and I didn't think I needed to explain with us running late, trecking a toddler around and all our hand luggage.
Hehe....the dramas didn't end there at all. Isaac only slept for 4 hours of the flight (this part of the flight was 18 hours or so). Alan and I got hardly any sleep at all and then we found ourselves in LA connecting to Minneapolis. I had forgotten how big American airports are! Boy, without a stroller and with all our hand luggage and having no sleep, it was heaps hard trecking around the airport.
Hehe, I shared with some people that when we arrived in LA I felt so sick and faint from no sleep that I practically staggered out of the huge plane and said to Alan, "oh no I need to put my head down" and squatted right there with my head between my knees....hehe...all I could see was some sort of chair coming towards me and so I walked as well as I could, only keeping that chair in focus and then felt myself sit down only to hear....."Um...Miss, this wheelchair has been booked for another person but if you want me to get you another one I can".
HAHAHAHA....I couldn't believe that I had just sat down in someone else's wheelchair!!! I asked her to give me a moment and then walked on recovering a bit more but I was heaps embarrassed by what I had done. Hehe.
Anyway, we then flew from LA to Minneapolis and .....guess what...we were then supposed to go to Portland, Maine but we missed our flight!!!! AHHHHHHH....I was pretty angry by then. I was tired, feeling sick and struggling to cope. Surprisingly Isaac was being so well behaved. It felt like no one would help us out. I am sure Alan was choosing to wander around the airport, wondering what to do, when we could have just asked someone. But when we asked it felt like we had no help anyway. Then they told us they had no hotels available for us. Yep, I was very tired by then. Alan and I finally found a hotel and slept the night...although Isaac was awake from 2am to 5am in the morning that night because of the time difference between America and Australia. Still...we were able to get on the flight at 8am the next morning to Portland Maine. Whew!!!! What a relief!
I found myself sitting next to Jackie and Evan on that flight. Evan I found out has FA and he was only about 12 months old (am I correct in saying that Jackie?). This was the first time I had ever met another FA human being other than my brother and I was thrilled. So thank you Evan and Jackie for being the first people with FA to introduce yourselves.
I actually found the first night at camp very overwhelming. When I arrived there I stayed in my room while Isaac was sleeping. Alan went walking about the camp site. When he came back he said that he had already met some of my friends from online.
I went out that day and met Krisstina, Jo and Jacy, Nicholas Boggs, Donna Boggs, Kristen and Wesley, Teresa, Tyler and Emma....and so many more people that I felt so overwhelmed but couldn't register that I was not in Australia anymore.
I found Camp Sunshine a challenging place. The medical information about FA was not new to me but it did affect me and I found it hard to listen to. Sometimes it made me feel helpless and hopeless, but then I would have to remind myself that Jesus is bigger than FA and that with God anything is possible. Healing is possible. I had nights and some days where I would cry in my room because I was so overwhelmed by it all. You have to remember that this was my first time seeing other children with FA and hearing intense lectures about FA. It was hard. The children were such a dream to meet and so lovely.
I love you Nicholas Boggs. I love the way you love life. You are a credit to the Lord Jesus Christ- and you too Donna.
Wesley, you are too cute (and your mum of course).
The Clifton family are amazing. Emma is gorgeous and Isaac played with her so well. They fought and complained about each other.....but in a charming way. They also held hands and hugged each other.
Teresa, thank you for your support at camp...even though we had only just met face to face you really did welcome me and make me feel wanted and comfortable.
That is another thing I was blessed by.....how you all welcomed me to camp, into the FA community. I have felt so alone here in Australia with FA....I was so blessed to have a family to talk with, to love.....thanks to ALL of you. I was so blessed that so many of you accepted me. I am so glad that I could bring hope into your lives in regards to FA...and I am glad you all loved my miracle boy, Isaac. You all have played such a big part in my heart over the last month....there are too many of you to mention....but thank you.
The photos that you see are some of camp and Oregon. I have pictures of Krisstina and Jo and Jacy...it was so nice to meet you girls!
Oh and at the talent night I felt the need to share a song with you all...I was really scared...hehe..you may have seen me shaking....it was about how Jesus' love is neverending and that no matter what happens in life, Jesus will always be with us.....I did miss hearing about the importance of God at camp and how significant He is in our walk in life. I was really taken back with the response I got from the song. People were touched by it and that really touched me. So thanks for making camp a good experience despite the hard parts of it.
In my next update I will share about our holiday with the Cliftons in Oregon, but this journal entry is way too long now so I will wait.....and there was more drama with the planes as well.....oh and once we got to camp...the airport had lost Isaac's luggage.....thanks heaps to Michelle, Denise and Alicia for letting Isaac borrow Alicia's shoes while he had no luggage.....Hmm...I still need to send those shoes back.
On the medical side of things for me....I had an IVIG infusion 2 days ago and it went well. I had an anxiety attack when I saw the doctor who was not well mannered to me before I left for camp but he didn't admit me....so that was good. I catch up with Dr. Ben in about 2 weeks.
Ok...got to go...
Love Charisse
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Saturday, September 3, 2005 9:01 AM CDT
Hi Everyone,
We're still alive! Back in Australia, safe and well. We've been really busy over the last week and Charisse has not had a chance to update anything. I'm sure she'll get to it any day though, so keep watching.
There's new photos in the gallery, so check them out!
Love you all,
Alan, Charisse & Isaac.
xx
It is Wednesday night and I am feeling improved compared with the other day. Tuesday my mum came and looked after Isaac and I had a sleep in and then today I was back on my own again but in a better state of mind. I still feel tired but I am getting there. I just have to make sure I get to bed early.
So today we had kindergym and Isaac loved it. He ran everywhere and climbed on all the equipment.
Then I went to a friend's house and she has a 2 1/2 year old and Isaac and him played together. They wrestled!!! It was Soooooooooo cute! They were laughing and pulling each other down and stuff....Isaac really needed the interaction! Then I came home and Isaac had a sleep while I did things around the house, emailed and read my Bible.
It was a good day. So now I need to get off to bed! I need to make sure I am relaxed.....please still keep my emotional health and physical health in your prayers.
Lots of love,
Charisse
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Sunday, September 25, 2005 11:54 PM CDT
Well, it is Monday and I don't feel like it has been the best day. It is Monday here in Australia at 2.30pm. I just was never able to recover from the sleepless night on Friday night and so Sunday, I was so nauseated...I had to miss church...Alan and Isaac still went...and today I woke up and felt so unwell and tired that I had to ring mum and dad up and get them to take Isaac for the day.
I lay on my bed all morning and couldn't stop the tears. I felt so bad that I had to send Isaac off with my parents. He has been just wanting me all the time but he seemed happy to go with them.
I am still in my PJ's......I just need to feel good again.
Thanks to my friends who have chatted with me over the phone or any other way.....who have helped me feel better. Thanks to Alan, my husband, for being patient with me when I am crying on the phone...my anxiety sometimes rears its ugly head and then it just flows out!
So I am going to have a bath and feel better....but I still feel so unwell and so guilty about feeling this way. I hope Isaac would not be cross at me about it. I love him very much....and I wish I could stop crying. Boy, I hope my week gets better.
Bless you and love you,
Charisse
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Friday, September 23, 2005 9:46 PM CDT
Good Afternoon,
well just a short update to let you know how life is going.
My mouth ulcer that Dr. Ben looked at...he gave it 2 weeks to heal and then we were going to biopsy it.....well it is healed and gone!! Praise the Lord!
Another thing to rejoice over...well for us anyway. Isaac has begun toilet training the last 2 weeks and last night was the first time he ever has done a poo in the potty! I wasn't there...but Alan was. He sat on the potty....and did a poo! When he got off the potty he was scared of the poo and started screaming and yelling, looking at the potty freaked out and all. He was rewarded with praise and his favourite muslie bar! I will use stickers more now...thanks to the person who mentioned that idea....was it Sandra? Anyway, he is a bit scared of the potty now but that is ok because he will get better again. Doing a poo in the potty can be kind of scary for a child.
Yesterday I worked an 8 1/2 hour shift at the hospital. I was in day surgery and I really enjoyed my shift. I usually do most of my shifts in Theater Recovery. It was so busy and I was on my feet all day. I worked from 11am to 7.30pm.. Usually around 6pm my body says, "I am tired and switching off". Well, I suddenly felt tired at that time but I managed to push myself. I don't do night shifts because my stamina can't manage it. But I was very happy with my shift....some interesting things happened but they are confidential.
I had a bad sleep last night though. I got home from work and we did devotions with Isaac and he went to bed. I went to bed around 10pm and turned the light off at 10.30pm. I had high anxiety for some reason and my mind started to have very clear visions of the women's and children's hospital where I go to see Dr. Ben (also where Shannon died). I started to get heart palpitations and breathing difficulties and my mind rehearsed me having a full on anxiety attack and so I tried to stop my mind and focus on other things. At 1am I woke Alan and he tried to relax me by rubbing my legs.....I then continued to try and sleep but by 3pm I woke Alan again and then all my anxiety came out. we were up until 5am with all my anxiety. I am very tired today. Please continue to pray that the things causing me grief will get worked out.
Ok well I need to go. I have a 1 year old birthday party to go to with Alan and Isaac.
Bless you all and bye,
Charisse
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Sunday, September 18, 2005 11:44 PM CDT
What a day! It is just an ordinary Monday but I haven't enjoyed my day much at all. Isaac is toilet training. He is a good boy. We have only been trying it for a week. So he is only into the stage of learning to sit on the potty without being frightened. I am sure that I have annoyed him today and he has annoyed me. I love my dear darling of course. He has done well to be less afraid today. I try and make it fun! Hehe!
Hehe...I feel grumpy today...well I have felt grumpy the last week...not because of Isaac but because of certain truths that a woman must endure....and I am sure Isaac looks at me and thinks, "what's up with you mum?" and then tries and makes things a bit more difficult for me in everyway.
He is getting restless with the rainy days and wants to get outside and play. It is just not possible today...so we played lego. He is in bed now and I think I will rest too after this.
Yesterday at church was wonderful. We had a visiting Pastor speak at the church. His name is Peter Franz. He ministers in Uganda and other regions of Africa. My church is 90 frican here in Australia and so they enjoyed having him here to speak. He has been blessed with a healing annointing from the Lord and so when he asked for people with "blood disorders" to come up for healing I marched right on up. I sure do believe in the power of the Holy Spirit to heal the sick and I wasn't going to miss out. I felt such a humbling before Jesus and kept thanking Him and thanking Him. I had an amazing time with God. I truly can feel His presence greater these days and I would never want to be without Jesus...and I am trusting Him for the healing of FA throughout my body. I know Jesus can heal. I have seen Jesus heal people with AIDS in front of me and I have witnessed them show their before and after medical tests....God is truly amazing and I trust Him with my life.
So please know that there are specific people I am praying for and have on my heart....I will remember you in prayer. With God nothing is impossible.
All right, well, I am now going to go. I pray that you will all have a great week.
Love Charisse
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Wednesday, September 14, 2005 4:36 AM CDT
Good Evening,
Well, I actually did quite well in my appointment with Dr. Ben. I have had a nasty ulcer in my mouth for 2 weeks. It started when I changed toothbrushes and my gums were irritated and it got so big I was a bit concerned about it. So I let Dr. Ben have a look and he thinks it looks like an ordinary ulcer and explained what potential canerous ones usually look like. He gave it 2 weeks to heal and if it isn't healed then we will do a biopsy to check for what infection it could be and of course, that always rules out cancer as well. But since Monday, my ulcer is smaller and not as sore and is healing up. So I am pleased about that and I am being real careful as I brush my teeth so I don't re-open to ulcer and let it heal.
I was able to finally talk to Dr. Ben concerning some other issues as well to do with the gynae. I had never told anyone and after hearing the gnae lecture at camp sunshine I suddenly thought about my issue and realised that after years of enduring such a thing it could have probably been fixed....Dr. Ben was very accomadating and will speak to my gynae doctor about it and may be we can help my issue.
I was disappointed that my platelets are jumping around a bit. I always feel uneasy about all that......but platelets do tend to jump around a lot, especially if you are doing 6 weekly blood tests with the IVIG infusion I have. When I used to have bloods every 4 to 6 months, you wouldn't see the jumps that the platelet count does and you never would have known. Every thing else is about the same. I was pleased with my cholestrol....I have had a cheese craving lately and have been crazy with cheeses...hehe...glad my cholesterol is till well within normal levels.
I still found going to the Women's and Children's very hard but Isaac was with me and amused me heaps....even though I had a lot of anxiety I did well. Dr. Ben asked me if I would be able to try coming to the clinic in Ronald McDonald House instead of the ward...I said I didn't know...I felt a bit panicked about it actually...so I will let him know...another thing to overcome.
There are still issues I am dealing with in relation to FA. Please keep praying for me. I think we will always be dealing with issues but this one is a big one.....and as I have said before, feels big and overwhelming for me, but nothing is ever impossible with Jesus or too big for Him.....so I will continue to trust in Jesus. I am desperately asking the Lord on certain subjects at the moment and I know He hears me. God's grace never fails.
Donna and Nicholas...I am thinking about you guys as you try the oxymethalone. I pray that this drug is a wonder drug for you as it was for me.
Ok, well life goes on. Isaac is busy trying to get my attention so I am going to go.
Bless you all and good night.
Love Charisse
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Sunday, September 11, 2005 8:53 PM CDT
Hi Everyone,
today is Monday for me. I have an appointment with Dr. Ben today. I actually thought on the weekend, "wow I feel ok about my appointment" and then something happened and I have been in tears about FA stuff and my appointment today. Once again I have felt extreme anxiety prior to my appointment and it is hard to hold the tears in.
My brother is very close to my heart at the moment. We just celebrated his birthday recently and he would have been 25 years old had he still been alive. I went to his gravesite and broke down in tears. I feel it so strongly...the hurt and love I have for him and the grief that I then realised, once again, that I am dealing with.
So it is off to the Women's and Children's hospital again today for my appointment and I feel broken as I go facing the hospital where so many things took place. How much longer will I feel this way?
There are so many issues to address with my appointment today. We will address certain issues from the FA Camp.
I just don't like going to the doctor who facing certain things, talking about stuff.
Anway, Jesus is with me all the time and so I will walk with confidence. I know that Jesus is doing a healing work in my marrow and whole body with FA all the time. I will continue to trust in Him even though I sometimes feel sad.
I pray that you are all having a good day or night.
Bless you and talk soon,
Love Charisse
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Thursday, September 8, 2005 5:46 AM CDT
Well, I have shared about camp but not about our time in Oregon with the Cliftons.
It was a relief to not have to fly to Australia the week after camp. I don't think I would have handled such a long flight...so we just went 8 hours across the country to Portland, Oregon. We stayed in a hotel in Aloha. We holidayed with Teresa, Tyler and Emma Clifton. It was good. The first day we just slept in and then went to their house and left on a short drive to see the scenery. The greenery was beautiful. It was so green. In Australia it is not so green, especially in the summer time. So I was fascinated by the trees and how lush it was.
The second day Alan and Tyler went shooting at a gun ranch and I stayed with Teresa at her appartment. We had Emma and Isaac with us and we just took it easy. After a huge week at camp it was nice to go slow. We went to the park and the kids played. They played so nicely together. They had to copy each other. At the park they sat on a swing together and laughed as they were pushed. Isaac loved the company!
Later that day Teresa, Tyler and Emma took us to see Emma's hospital and the huge air bridge that it has. I can't remember whether I have put photos of that on the website but the hospital has a beautiful view on the mountain and I was fascinated by how children friendly the hospital was...hehe..now it is a children's hospital so you ask me why was I surpirsed? Our major children's hospital in Adelaide is more medical looking and I think the set up at this American hospital was great....I am also a nurse and love other country's hospitals.
We also went on a day's long outing to see Mt St Helens in Washington State....that was excellent and you can see the mountain in the pictures I have postered here. It is an active volcano and it had steam coming out of the top. I could smell the supha and feel the heat from it. we drove to the furtherist lookout. We were so close to it. I then saw a show on this volcano back in Australia and was pretty pleased to announce that I had been there in person. Hehe.
We went to Oregon zoo...what a cool zoo....and even cooler than ours here in Adelaide. I liked the marine creatures and bears because you got to see them in an aquarium type setting as well as from the top on the outside. That fasinated me....that is where we got the pictures of the seal lions...if I have posted them that is.
And...we saw the fabulous waterfalls....they were great and so huge. I bought some things from there for my famliy. I think there are some photos of them on this site. That was lovely...and then we visited with Rachel Altmann and Nina who has FA (she is 2 I think....HI Rachel, Nina, Benjamin and Tyler). We had a great time there. I loved their house...wow!! We haven't got houses like that where we live! It was so nice spending more time with you Rachel. You are a lovely person.
Oh, Rachel, Benjamin and Nina also came with us to the zoo that time.
Every night we were taken to a different restaurant to get a taste of the variety of food in America. We went to Chinese, Mexican, Italian, had pizza...even the pizza taste different! Teresa cooked for us a couple of nights and she is a great cook!
A good time was had by all and it was a shame when we had to leave. We only could stay a week and then we were flying home again (only to accidently leave our hand luggage with sercurity and realise last minute and almost missed our flight..hehe).
Anyway, once again i have chatted too much. So I am going to go and relax.
Bless you all,
Love Charisse
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Sunday, September 4, 2005 6:07 AM CDT
Hi Everyone,
sorry about the lack of updates since I have been back from America. I have only been back one week and I have been so busy catching up on everything.
I just put Isaac to bed so I think I have time to chat now for a while.
First of all, our 2 weeks in America, the first in Cascoe Maine and then Portland, Oregon....were both good weeks.
As per usual, excitement tends to follow Alan and I around so the excitement and adventures of what lay ahead started as soon as we left Adelaide airport.
Isaac still enjoys bottles with milk in it...not to carry around but only to enjoy with his breakfast,lunch and tea. If you forget these bottles, he will often get upset so they were very important to Alan and I. Already our dramas began when we arrived from Adelaide to Sydney in Australia on the way to America. We got off the plane to board onto the international flight to LA and realised that we had left Isaac's bottle bag with his bottles in the previous plane. Poor Alan ran so fast to go and get the bag...of which we did get hold of. Our Adelaide flight was running late and so we were late getting on the plane for LA. As we were fumbling onto the plane I asked for some help and the air hostess said, "what's wrong with you?". I was shocked! I had never had an air hostess ask me such a ridiculous question before and I didn't think I needed to explain with us running late, trecking a toddler around and all our hand luggage.
Hehe....the dramas didn't end there at all. Isaac only slept for 4 hours of the flight (this part of the flight was 18 hours or so). Alan and I got hardly any sleep at all and then we found ourselves in LA connecting to Minneapolis. I had forgotten how big American airports are! Boy, without a stroller and with all our hand luggage and having no sleep, it was heaps hard trecking around the airport.
Hehe, I shared with some people that when we arrived in LA I felt so sick and faint from no sleep that I practically staggered out of the huge plane and said to Alan, "oh no I need to put my head down" and squatted right there with my head between my knees....hehe...all I could see was some sort of chair coming towards me and so I walked as well as I could, only keeping that chair in focus and then felt myself sit down only to hear....."Um...Miss, this wheelchair has been booked for another person but if you want me to get you another one I can".
HAHAHAHA....I couldn't believe that I had just sat down in someone else's wheelchair!!! I asked her to give me a moment and then walked on recovering a bit more but I was heaps embarrassed by what I had done. Hehe.
Anyway, we then flew from LA to Minneapolis and .....guess what...we were then supposed to go to Portland, Maine but we missed our flight!!!! AHHHHHHH....I was pretty angry by then. I was tired, feeling sick and struggling to cope. Surprisingly Isaac was being so well behaved. It felt like no one would help us out. I am sure Alan was choosing to wander around the airport, wondering what to do, when we could have just asked someone. But when we asked it felt like we had no help anyway. Then they told us they had no hotels available for us. Yep, I was very tired by then. Alan and I finally found a hotel and slept the night...although Isaac was awake from 2am to 5am in the morning that night because of the time difference between America and Australia. Still...we were able to get on the flight at 8am the next morning to Portland Maine. Whew!!!! What a relief!
I found myself sitting next to Jackie and Evan on that flight. Evan I found out has FA and he was only about 12 months old (am I correct in saying that Jackie?). This was the first time I had ever met another FA human being other than my brother and I was thrilled. So thank you Evan and Jackie for being the first people with FA to introduce yourselves.
I actually found the first night at camp very overwhelming. When I arrived there I stayed in my room while Isaac was sleeping. Alan went walking about the camp site. When he came back he said that he had already met some of my friends from online.
I went out that day and met Krisstina, Jo and Jacy, Nicholas Boggs, Donna Boggs, Kristen and Wesley, Teresa, Tyler and Emma....and so many more people that I felt so overwhelmed but couldn't register that I was not in Australia anymore.
I found Camp Sunshine a challenging place. The medical information about FA was not new to me but it did affect me and I found it hard to listen to. Sometimes it made me feel helpless and hopeless, but then I would have to remind myself that Jesus is bigger than FA and that with God anything is possible. Healing is possible. I had nights and some days where I would cry in my room because I was so overwhelmed by it all. You have to remember that this was my first time seeing other children with FA and hearing intense lectures about FA. It was hard. The children were such a dream to meet and so lovely.
I love you Nicholas Boggs. I love the way you love life. You are a credit to the Lord Jesus Christ- and you too Donna.
Wesley, you are too cute (and your mum of course).
The Clifton family are amazing. Emma is gorgeous and Isaac played with her so well. They fought and complained about each other.....but in a charming way. They also held hands and hugged each other.
Teresa, thank you for your support at camp...even though we had only just met face to face you really did welcome me and make me feel wanted and comfortable.
That is another thing I was blessed by.....how you all welcomed me to camp, into the FA community. I have felt so alone here in Australia with FA....I was so blessed to have a family to talk with, to love.....thanks to ALL of you. I was so blessed that so many of you accepted me. I am so glad that I could bring hope into your lives in regards to FA...and I am glad you all loved my miracle boy, Isaac. You all have played such a big part in my heart over the last month....there are too many of you to mention....but thank you.
The photos that you see are some of camp and Oregon. I have pictures of Krisstina and Jo and Jacy...it was so nice to meet you girls!
Oh and at the talent night I felt the need to share a song with you all...I was really scared...hehe..you may have seen me shaking....it was about how Jesus' love is neverending and that no matter what happens in life, Jesus will always be with us.....I did miss hearing about the importance of God at camp and how significant He is in our walk in life. I was really taken back with the response I got from the song. People were touched by it and that really touched me. So thanks for making camp a good experience despite the hard parts of it.
In my next update I will share about our holiday with the Cliftons in Oregon, but this journal entry is way too long now so I will wait.....and there was more drama with the planes as well.....oh and once we got to camp...the airport had lost Isaac's luggage.....thanks heaps to Michelle, Denise and Alicia for letting Isaac borrow Alicia's shoes while he had no luggage.....Hmm...I still need to send those shoes back.
On the medical side of things for me....I had an IVIG infusion 2 days ago and it went well. I had an anxiety attack when I saw the doctor who was not well mannered to me before I left for camp but he didn't admit me....so that was good. I catch up with Dr. Ben in about 2 weeks.
Ok...got to go...
Love Charisse
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Saturday, September 3, 2005 9:01 AM CDT
Hi Everyone,
We're still alive! Back in Australia, safe and well. We've been really busy over the last week and Charisse has not had a chance to update anything. I'm sure she'll get to it any day though, so keep watching.
There's new photos in the gallery, so check them out!
Love you all,
Alan, Charisse & Isaac.
xx
Tuesday, August 30, 2005
August 2005 entries
Wednesday, August 24, 2005 4:16 PM CDT
Saturday, August 27th 11.30am Adelaide Time
***UPDATE***
Hello there,
well I am back in Australia now. We landed in Adelaide at 10.30am yesterday. It is so weird because imbetween Australia and America we lost a day. So we left on Wednesday in Oregon and missed Thursday and it landed on Friday in Australia. It is now Saturday. I will write about my trip soon but I am so tired from jetlag at the moment it feels like too much effort. We were so tired last night. I couldn't keep Isaac up til 8pm like I planned. He fell asleep at 6.15pm and then woke at 4am crying, then fell asleep with Alan in bed for another 4 hours. At least he acutally slept since our night time was America's day time and I was afraid he might want to be up all night like he did when we first arrived in America.
Alan and I went to sleep at 7.30pm last night and I feel asleep with my light on it was so quick. I was acutally going to read my book but must have fell asleep so quickly. That is so unusual for me since I am often up to 12 midnight with anxiety issues and stuff. There was no room for anxiety last night because my body was so exhausted. I slept right through til this morning at 8am. I currently feel very tired and have been negotiating with my body all morning to have a shower but i feel like I may collapse in the shower so I have put it off. However, I am going to attempt to have one after I have finished here.
Well, when I have more time and feel better I will update my photos to include those from Camp sunshine and Oregon. I will talk about my experience with camp and I will tell you about our fabulous holiday with the Cliftons in Oregon. And yes, I will ramble on and on just like I am doing now......hehe. So have a great day to you all and chow!!
Love Charisse
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Hello Everyone,
I haven't checked my site for ages because I am actually still in the USA. I am only just finishing my trip in the states. So, for those of you who have been concerned.....anxiety and depression has not been the reason why I have not been updating. Thank you to Teresa Clifton who is allowing me to check my email and update today on her computer from Oregon.
We have been holidaying with the Cliftons and it has been really good.
We are leaving today to come back to Australia. We leave in just under 2 hours for the airport and then fly from Oregon to LA and then to Melbourne in Australia. Then we go from Melbourne to Adelaide which is where we actually live. So we have a long flight ahead of us.....I am a bit anxious about it. Also it has felt rather intimidating at the American airport since my family has been put down as needing special screening all the time and I find that very invasive and it makes me a bit scared. The airport hasn't felt very welcoming. However, security has been increased here in the USA since I was here a long time ago and it is strange being scrutinised so much by security. It can be scary. So I am trying to tell myself that I will be ok.
Our flight is about 19 hours or so....less than getting to the states.....we took 26 hours and 50 mins to get here because we went across the country as well to get to Portland, Maine for the FA camp.
It was really nice to meet you all at camp......Donna....it was a pleasure and I am so sorry that we didn't sit down and take more time to speak with you....I really wanted to do that.
Well, after I get back to Australia and recover a bit from jetlag I will actually write about my experience at FA camp and my holiday with the Cliftons in Portland, Oregon.....and I will update some photos as well.
I must be off....I just wanted you all to know that I am fine. Please pray that our flight will be fine and that I will handle the flight ok. Please pray that we will be safe. Please also pray that Isaac will handle the flight well and not cry all the way through. He is having a sleep at the moment and so hopefully he will handle things ok.
Bless you all so much. Thinking of you Donna and Nicholas, Maria and I am so sad to leave Teresa, Tyler and Emma. Isaac has played so well with Emma.....and Rachel and Nina...it was so good to be at your house yesterday and just visit.
Lots of love,
Charisse
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Monday, August 8, 2005 5:44 AM CDT
***UPDATE***
Wednesday, August 10th, 2005
Hello, well tomorrow morning Alan, Isaac and I leave to go to America for camp sunshine. I am looking forward to seeing everyone. We have a total of 26 hours and 50 mins flight time. I took Isaac to kindergym today to help him get rid of some energy. It is late afternoon now and I can't believe we leave tomorrow morning. So I will update when I get back.
Love Charisse
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Good Evening Everyone,
I am so sorry that I haven't updated for a while.....and it hasn't been because nothing has been happening. Boy, things have felt like they have been a mess since my last entry. Despite all the fuss that has been happening God is still good, all the time.
I have had a couple of things happen to throw me off, and I am trying to deal with them. Nothing Jesus can't handle but sometimes I feel scared......I will share about that when I am ready. However, please know that I trust Jesus with all my heart and love Him no matter what.
With all that.....I have had anxiety through the roof!! Unfotunately it really debilitated me for 2 weeks and I was having fainting problems and panic attacks all over the place. I am praying that all this is settling. I was so emotionally exhausted.....to top it off my L breast started giving me problems even more since my last entry and I ended up with a bowel infection and so I was quite unwell last week and the week before. I had difficulty looking after my son Isaac....all I could do was lie on the couch..I was in heaps of pain and the locum doctor (call out), couldn't do much for me so I ended up in hospital on Wednesday last week being treated for high anxiety, mastitis and a bowel infection and totally exhausted. Actually, it isn't very often at all that I get sick from infections.....it is not often at all....plus I knew that we were leaving for America this week for CAMP SUNSHINE and I was panicking that I would not be well enough.
Most of you know that I have a new doctor for admission to a hospital because my haematologist, Ben, cannot admit me at the childrens. I wrote in my last journal my first consultation with him during my IVIG infusion and I didn't much like him.
Well, he was away on holidays last week and so I actually got admitted under another doctor who is loud and jolly....that is the best way to describe him. I had seen him at the center where I get the infusions and I always used to laugh because he talks SO loud that you can hear whatever he is saying to his patient so clearly....you end up knowing about everyone!!!
So he admitted me......I am not one to like examinations at all. When I was a child I was touched inappropriately..and this has happened a number of times and so I am VERY choosey of who examines me. Parents please remember that as a child you are so vulnerable and when you have a disease, especially like FA, the doctors do invade our personal space and we feel really awful. It only takes a moment and the child feels invaded......so please remember the child and their feelings and try and make it as least invading as possible. I struggle with so many emotional issues from what happened to me. Although, I do realise that some things you just cannot help at all. So please don't stress.
This doctor was so nice and understanding and not forward or anything that I actually felt ok with him checking me out....which is so unusual for me.
So I started antibiotics and had bloods and an x-ray and began to relax and get well.....when this OTHER doctor came back from holidays!! OH NO!!!!
He discovered I was in hospital and burst into my room demanding that I let him examine me (and it was an invasive exam he wanted to do). I immediately felt scared and said "NO" and he continued to forcefully tell me that I had no right to say no and that I will do as he says and that I upset the other doctor with my emotions and restrictions and that I could die and all sorts of accusations......and he said that it is unacceptable that I won't let him look......far out..I wasn't even admitted under him!!! And he was wrong, I had let the other guy examine me and the other guy had done bloods and everything was fine.......this doctor also made some other unprofessional remarks....it was very inappropriate.....as if I would let him look when he demands just like that and with his attitude......we had a very heated arguement. It was scary and sent my anxiety through the roof!! He barged out and more happened but I will not say what happened.....and then the tears came and my mind said, "that is why you choose your doctors carefully".
I cried and cried and then the other doctor walked in all cheery and I started crying to him saying that i was sorry he was angry at me because he felt compromised like the other doctor said and this guy just sat down and said, "WHAT!!!"......I cried while trying to explain and hyperventilating and this doctor said, "I am not angry at all and I don't feel compromised. We did the right thing by you as a person and as a patient...we cared for your whole being". "It would not be right for me to not consider you as a whole person". He reassured me...said he didn't know why the other doctor was so cross and why he said that he was cross.....he spoke with me for ages and was really nice......he didn't put down the other doctor. He was very professional in his approach but he did say that the other doctor obviously had his buttons pushed and now I had mine pushed and we all need to just calm down. He was very sweet.
The doctor who got frustrated said to me that emotion just gets in the way of his medical treatment and there is no room for it. That was harsh. Especially when I am seeing a pyschologist over some pretty big stuff and need the understanding of my doctors.
I was so upset...the nurses had to try and calm me down...the other doctor ordered some medication to help sedate me more...the nurses talked long with me and Alan helped me.
The next morning Alan was there and the nurses had blocked my room so no one could enter....and when this doctor came back I was in the shower and Alan spoke with him for a long time. Then we spoke with Dr. Ben.....well it is decided that this doctor may be good for other people but is not suited to me at all....and will not benefit me but harm me.
When I left the hospital I decided that I should be polite and say good bye so I did....and Alan and I have been praying for him that he will soften his heart in his approach to people......he doesn't know that I am not going back to him yet....but Dr. Ben would like the other doctor who I got along with to help in stead if he can.....so we will politely ask and see. He is not a haematologist but just an oncologist but Dr. Ben said that all we need is someone to help with admission for infusions and Dr. Ben will do the rest (he is my haematologist). So the other doctor wasn't willing to let Ben be the main doctor...but this other one again, has no problem with the arrangement. Don't know what will happen. I am just relieved that I am not under that other doctor anymore.
So, my next infusion is the 2nd Sept. and hopefully this doctor can help Ben out.
Besides ALL the emotional stuff. I am feeling much more well and I have been packing all day for leaving for America this week....only 3 more sleeps and we are off.
I am so excited about camp sunshine now that I feel well again. It will be wonderful to meet so many people associated with FA, but also because I have grown to love so many of you and you have touched my life.
Bless you all.....and I am so sorry that my journals are full of so much emotion. I do still love life despite what I go through....it will eventually calm down again....of that I am certain.....Jesus is faithful and a loving God......there is no way I would ever be without Jesus.
Bless you all and love you,
Charisse
Saturday, August 27th 11.30am Adelaide Time
***UPDATE***
Hello there,
well I am back in Australia now. We landed in Adelaide at 10.30am yesterday. It is so weird because imbetween Australia and America we lost a day. So we left on Wednesday in Oregon and missed Thursday and it landed on Friday in Australia. It is now Saturday. I will write about my trip soon but I am so tired from jetlag at the moment it feels like too much effort. We were so tired last night. I couldn't keep Isaac up til 8pm like I planned. He fell asleep at 6.15pm and then woke at 4am crying, then fell asleep with Alan in bed for another 4 hours. At least he acutally slept since our night time was America's day time and I was afraid he might want to be up all night like he did when we first arrived in America.
Alan and I went to sleep at 7.30pm last night and I feel asleep with my light on it was so quick. I was acutally going to read my book but must have fell asleep so quickly. That is so unusual for me since I am often up to 12 midnight with anxiety issues and stuff. There was no room for anxiety last night because my body was so exhausted. I slept right through til this morning at 8am. I currently feel very tired and have been negotiating with my body all morning to have a shower but i feel like I may collapse in the shower so I have put it off. However, I am going to attempt to have one after I have finished here.
Well, when I have more time and feel better I will update my photos to include those from Camp sunshine and Oregon. I will talk about my experience with camp and I will tell you about our fabulous holiday with the Cliftons in Oregon. And yes, I will ramble on and on just like I am doing now......hehe. So have a great day to you all and chow!!
Love Charisse
*********
Hello Everyone,
I haven't checked my site for ages because I am actually still in the USA. I am only just finishing my trip in the states. So, for those of you who have been concerned.....anxiety and depression has not been the reason why I have not been updating. Thank you to Teresa Clifton who is allowing me to check my email and update today on her computer from Oregon.
We have been holidaying with the Cliftons and it has been really good.
We are leaving today to come back to Australia. We leave in just under 2 hours for the airport and then fly from Oregon to LA and then to Melbourne in Australia. Then we go from Melbourne to Adelaide which is where we actually live. So we have a long flight ahead of us.....I am a bit anxious about it. Also it has felt rather intimidating at the American airport since my family has been put down as needing special screening all the time and I find that very invasive and it makes me a bit scared. The airport hasn't felt very welcoming. However, security has been increased here in the USA since I was here a long time ago and it is strange being scrutinised so much by security. It can be scary. So I am trying to tell myself that I will be ok.
Our flight is about 19 hours or so....less than getting to the states.....we took 26 hours and 50 mins to get here because we went across the country as well to get to Portland, Maine for the FA camp.
It was really nice to meet you all at camp......Donna....it was a pleasure and I am so sorry that we didn't sit down and take more time to speak with you....I really wanted to do that.
Well, after I get back to Australia and recover a bit from jetlag I will actually write about my experience at FA camp and my holiday with the Cliftons in Portland, Oregon.....and I will update some photos as well.
I must be off....I just wanted you all to know that I am fine. Please pray that our flight will be fine and that I will handle the flight ok. Please pray that we will be safe. Please also pray that Isaac will handle the flight well and not cry all the way through. He is having a sleep at the moment and so hopefully he will handle things ok.
Bless you all so much. Thinking of you Donna and Nicholas, Maria and I am so sad to leave Teresa, Tyler and Emma. Isaac has played so well with Emma.....and Rachel and Nina...it was so good to be at your house yesterday and just visit.
Lots of love,
Charisse
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Monday, August 8, 2005 5:44 AM CDT
***UPDATE***
Wednesday, August 10th, 2005
Hello, well tomorrow morning Alan, Isaac and I leave to go to America for camp sunshine. I am looking forward to seeing everyone. We have a total of 26 hours and 50 mins flight time. I took Isaac to kindergym today to help him get rid of some energy. It is late afternoon now and I can't believe we leave tomorrow morning. So I will update when I get back.
Love Charisse
************
Good Evening Everyone,
I am so sorry that I haven't updated for a while.....and it hasn't been because nothing has been happening. Boy, things have felt like they have been a mess since my last entry. Despite all the fuss that has been happening God is still good, all the time.
I have had a couple of things happen to throw me off, and I am trying to deal with them. Nothing Jesus can't handle but sometimes I feel scared......I will share about that when I am ready. However, please know that I trust Jesus with all my heart and love Him no matter what.
With all that.....I have had anxiety through the roof!! Unfotunately it really debilitated me for 2 weeks and I was having fainting problems and panic attacks all over the place. I am praying that all this is settling. I was so emotionally exhausted.....to top it off my L breast started giving me problems even more since my last entry and I ended up with a bowel infection and so I was quite unwell last week and the week before. I had difficulty looking after my son Isaac....all I could do was lie on the couch..I was in heaps of pain and the locum doctor (call out), couldn't do much for me so I ended up in hospital on Wednesday last week being treated for high anxiety, mastitis and a bowel infection and totally exhausted. Actually, it isn't very often at all that I get sick from infections.....it is not often at all....plus I knew that we were leaving for America this week for CAMP SUNSHINE and I was panicking that I would not be well enough.
Most of you know that I have a new doctor for admission to a hospital because my haematologist, Ben, cannot admit me at the childrens. I wrote in my last journal my first consultation with him during my IVIG infusion and I didn't much like him.
Well, he was away on holidays last week and so I actually got admitted under another doctor who is loud and jolly....that is the best way to describe him. I had seen him at the center where I get the infusions and I always used to laugh because he talks SO loud that you can hear whatever he is saying to his patient so clearly....you end up knowing about everyone!!!
So he admitted me......I am not one to like examinations at all. When I was a child I was touched inappropriately..and this has happened a number of times and so I am VERY choosey of who examines me. Parents please remember that as a child you are so vulnerable and when you have a disease, especially like FA, the doctors do invade our personal space and we feel really awful. It only takes a moment and the child feels invaded......so please remember the child and their feelings and try and make it as least invading as possible. I struggle with so many emotional issues from what happened to me. Although, I do realise that some things you just cannot help at all. So please don't stress.
This doctor was so nice and understanding and not forward or anything that I actually felt ok with him checking me out....which is so unusual for me.
So I started antibiotics and had bloods and an x-ray and began to relax and get well.....when this OTHER doctor came back from holidays!! OH NO!!!!
He discovered I was in hospital and burst into my room demanding that I let him examine me (and it was an invasive exam he wanted to do). I immediately felt scared and said "NO" and he continued to forcefully tell me that I had no right to say no and that I will do as he says and that I upset the other doctor with my emotions and restrictions and that I could die and all sorts of accusations......and he said that it is unacceptable that I won't let him look......far out..I wasn't even admitted under him!!! And he was wrong, I had let the other guy examine me and the other guy had done bloods and everything was fine.......this doctor also made some other unprofessional remarks....it was very inappropriate.....as if I would let him look when he demands just like that and with his attitude......we had a very heated arguement. It was scary and sent my anxiety through the roof!! He barged out and more happened but I will not say what happened.....and then the tears came and my mind said, "that is why you choose your doctors carefully".
I cried and cried and then the other doctor walked in all cheery and I started crying to him saying that i was sorry he was angry at me because he felt compromised like the other doctor said and this guy just sat down and said, "WHAT!!!"......I cried while trying to explain and hyperventilating and this doctor said, "I am not angry at all and I don't feel compromised. We did the right thing by you as a person and as a patient...we cared for your whole being". "It would not be right for me to not consider you as a whole person". He reassured me...said he didn't know why the other doctor was so cross and why he said that he was cross.....he spoke with me for ages and was really nice......he didn't put down the other doctor. He was very professional in his approach but he did say that the other doctor obviously had his buttons pushed and now I had mine pushed and we all need to just calm down. He was very sweet.
The doctor who got frustrated said to me that emotion just gets in the way of his medical treatment and there is no room for it. That was harsh. Especially when I am seeing a pyschologist over some pretty big stuff and need the understanding of my doctors.
I was so upset...the nurses had to try and calm me down...the other doctor ordered some medication to help sedate me more...the nurses talked long with me and Alan helped me.
The next morning Alan was there and the nurses had blocked my room so no one could enter....and when this doctor came back I was in the shower and Alan spoke with him for a long time. Then we spoke with Dr. Ben.....well it is decided that this doctor may be good for other people but is not suited to me at all....and will not benefit me but harm me.
When I left the hospital I decided that I should be polite and say good bye so I did....and Alan and I have been praying for him that he will soften his heart in his approach to people......he doesn't know that I am not going back to him yet....but Dr. Ben would like the other doctor who I got along with to help in stead if he can.....so we will politely ask and see. He is not a haematologist but just an oncologist but Dr. Ben said that all we need is someone to help with admission for infusions and Dr. Ben will do the rest (he is my haematologist). So the other doctor wasn't willing to let Ben be the main doctor...but this other one again, has no problem with the arrangement. Don't know what will happen. I am just relieved that I am not under that other doctor anymore.
So, my next infusion is the 2nd Sept. and hopefully this doctor can help Ben out.
Besides ALL the emotional stuff. I am feeling much more well and I have been packing all day for leaving for America this week....only 3 more sleeps and we are off.
I am so excited about camp sunshine now that I feel well again. It will be wonderful to meet so many people associated with FA, but also because I have grown to love so many of you and you have touched my life.
Bless you all.....and I am so sorry that my journals are full of so much emotion. I do still love life despite what I go through....it will eventually calm down again....of that I am certain.....Jesus is faithful and a loving God......there is no way I would ever be without Jesus.
Bless you all and love you,
Charisse
Sunday, July 31, 2005
July 2005 entries
Tuesday, July 26, 2005 1:44 AM CDT
Good afternooon everyone,
well, sorry it has taken me so long to update on how I went with the new doctor and my IVIG infusion on the weekend.
I had a tough weekend to be honest. First of all, it took them 3 jabs to get IV access and I honestly didn't think they were going to get the third one in but they did - Praise God!!! It felt weird not having my private paediatric haematologist there...Dr. Ben. Please refer to the journal history in relation to that if you don't know what that is all about.
To be honest I felt vulnerable and upset on Friday. I sat in the chair and I had tears in my eyes as they jabbed me for the IV access. All you children out there who have constant pricks...well done. You do so well because I am an adult and I still cry. As a child, I was also very vulnerable. I was so nervous and relaxed a bit after the IV access was put in. Then the new doctor came over and I felt myself tense up. I had worked so hard to keep calm that day. I kept telling myself that I was safe and ok.
So I went in to see him. I thought it would be a quick hello because he is not supposed to be "looking" after me officially because Dr. Ben still is at the women's and children's hospital. However, he had a lot of questions. My anxiety started to rise but I managed to talk. I fiddled with my hands and felt my mind go blank every now and then. He then started raving on about my blood results and my bone marrow results in really technical terms that I thought Dr. Ben had missed something really serious in the results I had been given. I panicked and spoke loudly at him to STOP!!! I had not heard all my results and Dr. Ben was coming to the hospital to tell me that night. I already struggle with hearing any results, let alone from a new doctor who has not seen an FA patient in 20 years! I disliked my appointment. He was nice but too technical. When I told him that I had pain in my L breast he got all technical telling me that I might land in hospital if I don't hurry up and treat it and so on. Hmm....it made me panic....but I thought, "I will ask Dr. Ben tonight".
Then this guy even forgot that I was in overnight for IVIG reactions and tried to get me to go home. I had Dr. Ben visit. Please keep me in mind for some stuff that I am working through with my health. It is confronting and yet, I know what Jesus has said He will do. I am standing on His word. I don't feel like sharing more than that. Please remember me in your prayers. There are things that I have beaten with FA that doctors are amazed at. I am constantly taking authority over this disease in the Name of Jesus.
Anway, I had my reaction. I was so anxious that night and I had so much pain all over my body. I get a bit cross when I am in pain and anxious. So I refused IV sedation and fell asleep at 2am in the morning. Alan, my husband stayed with me and he said I woke every hour all night. I had so much pain meds and stuff and I still felt awful. Then the next morning, the nurse waltzed on in saying that I needed to get up anyway. I had had hardly any sleep. I was in hospital for crying out loud....I can sleep in. Well, I couldn't move properly and I heard her argueing with Alan about my steroids that I take....she was a real pain. I am an RN so I don't think I was being unjust. Anyway, she finally did my blood pressure and it was only 82/52...it was low...no wonder I felt so awful and couldn't get out of bed. It went up to 99/60 towards lunch and then she didn't check it again. But I reckon it went up a bit further because after lunch I could finally, dizzily have a shower and lie on the bed.
So, I felt tense about stuff. I didn't like the new doctor. At least he didn't attempt to touch me or anything. I had a hard time once I got home. I had some real emotional issues and the IVIG reaction was still bothering me. I missed church and suffered a bad headache and couldn't see and it just was not nice.
I had BMT issues in my face - I was grieving a lot about my brother.....I ended up getting so cross about somethings that happened way back then...in 1994...I also struggled with feeling the fear and emotion around having FA myself. There are times I feel really scared about FA.
But, I just want to say this. I might have FA. Yes, it threatens my life in lots of ways. You know, even just the medical information about FA threatens me. I am praying for all FA patients out there and for myself. I have set myself on a journey that this disease will not have its own way...I have beaten many odds about FA already. I will continue to beat them with Jesus right by my side. There is always hope with Jesus.
Oh yeah, so despite my little speech....the other thing that I was worried about was my L breast. I have struggled with mastitis and thrush in this breast since Isaac bit me about 6 months ago. It has been good for about 2 months I think and then last Wednesday it flared up again and there was so much pain. I started to worry. I started to worry that I actually had cancer with the risks and all with FA. So Dr. Ben said to get a breast ultrasound. I did that yesterday and everything is fine. No cancer just the thrush again. So I am back on medication for that. Praise God. Let's pray that the thrush vanishes forever now!!
Oh yes, and today I saw Dr. Smiley with Isaac. As some of you know he was 13 weeks early so he has regular paediatric check ups with Dr. Smiley. He was given a good report. He could be talking a bit better but he is fine. On top of that I had a good talking session with Dr. Smiley about some of my emotional issues (he often meets with me to discuss). We talked about America. Since in 2 1/2 weeks Alan, Isaac and I leave for Camp Sunshine in Cascoe Maine. I also gave him an updated book on FA. He was like an excited child. Hehe....he was so excited about the book and how he was going to have some good, night reading...funny to see them so excited over a medical book.
Anyway, I am such a talker!! I really need to go. Know that I am thinking about the adults and children beating diseases and disorders.
Bless you all and have a good day.
Love Charisse
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Tuesday, July 19, 2005 8:30 PM CDT
***UPDATE*** Saturday 23rd July
Hi Everyone.
I have just gotten home tonight after spending Friday and most of today in hospital having my IVIG infusion and then recovering. Since I get a reaction to the infusions and suffer form severe pain over my whole body and then my anxiety increases. I will update about how my visit went tomorrow or the next day. I had a few challenges and I must say that I didn't have the nicest time in hospital. I met the new doctor involved and I can only say that he was ok. But I will go into more detail about how I handled my anxiety and all. I am tired and will update soon. I also received finally, the cytogenetic results of my bone marrow. But,as I said, I will update on that later.
Love Charisse
Hello All,
thought I would update you all on how I went with seeing Dr. Ben on Monday at the women's and children's hospital.
Once again, in case you forgot, this was my first time attending the children's section for a medical appointment. I went on a "tour" to help desensitise myself to the environment a couple of weeks ago. There are so many memories there, including the tragic death of my brother, Shannon.
It was a challenging day. I accomplished a lot, however, it took a huge toll on my body and mind and I have felt quite tired from the whole ordeal. So I will explain what happened.
First of all, I drove in by myself. Before I left home, I felt quite nervous so I put some worship songs on in my car and sang to them at the top of my lungs all the way to the hospital. It takes about 40 mins to get there.
Once I was there, it was fine walking to the hospital, but once I got into the main entrance I had to start dealing with anxiety issues. HA.....you have to laugh sometimes. I walked back and forth, back and forth around the main entrance. I couldn't seem to get myself to walk "IN" properly. I had a small giggle to myself thinking that I must look so silly, this lady just walking up and down at the main entrance. Then I felt disorientated!! This is very typical of the anxiety I get. Sometimes disorientation leads to dissociation and I don't feel like I am actually there, everything is in slow motion, I don't feel real. It is a strange feeling. Anyway, I had disorientation. I knew where outpatients was but I couldn't remember how to get there. Now this hospital is imprinted on my mind. I know it inside out and upside down pretty much. I looked at the time, it was 3.30pm. I was supposed to be at the appointment. Hehe....I saw a cleaner and asked where outpatients was and she said just down the hallway. HA....how easy is that.
Well, on my way I found myself walking very slow. Memories of being a child and a patient were fresh in my mind. I felt scared but convinced myself that I was ok and I am an adult now and no one can do anything to me without my authority. That was a big thing when I was a child. I didn't like it when doctors did "what they want" when I felt vulnerable and exposed. So I was scared it would happen again, but this time I am an adult.
I got to outpatients and quietly said who I was and sat down. It was so overwhelming and I put my hands to my face and just cried. I couldn't believe that I was back in this hospital again, as a patient, where Shannon died and where I remember so much invasion as a child. The nurses were wonderful. They didn't overwhelm me. She led me to a quiet room where I could cry without interruption.
I then gathered myself together and Dr. Ben walked in. I had stopped crying. Unfortunately, Dr Ben is the Fanconi Anaemia doctor to me. He is extremely nice and polite and kind. He is not threatening in anyway. But I struggle to talk to him when I am in confronting situations. Like, I can't face him to hear bone marrow results. It is too confronting. This time it was confronting because the environment felt confronting. He talked with me and was soooo pleased and expressed so much excitement that I had driven myself. Proclaiming that it was such an achievement that I had even made it here. He said not to be too hard on myself with having difficulty talking because getting here was a huge accomplishment, and the fact that I was even in the appointment was more than he expected me to do. I felt good about that. I did manage to talk eventually, in broken sentences. It was very overwhelming but I think I did well. I had to concentrate soooo hard not to hyperventilate so I would shut my eyes for long periods to get control of that. I would fiddle with my hands and my chest felt sore and tight. But I managed to sit there and have a broked conversation. That is an achievement. I am sure that when Dr. Ben said that he had to leave his private practice and do more hours at the childrens.....it was Jesus trying to get me to confront my grief and fears at this hospital and it is sure not easy.
I had some questions about the genetics of FA and he answered them for me. It was so involved and finally, at one point when I asked a very confronting question, he answered it, my body said, "that is enough". I started getting dissociation. I could hear him talking to me, but he sounded far away, I felt heat rise in my cheeks and I suddenly felt like I was not there. When I opened my eyes, things were blurry and I knew, "oh no....I am going to topple over". When I have high anxiety.....I suffer from conversion reactions where the anxiety and stuff is so high that it disrupts your physiology and you collapse. Except this time I was going to take control of the situation and said to him that I was feeling unwell and needed to lie down. Unfortunately, on the way to the bed, that was it, I went, I collapsed......so anyway, despite that.....even with that....I did so well...instead of just collapsing I was able to try and take control of the situation. My pyschologist says that is the key to making you feel proud of yourself. When you can detect something before it happens and try and do something about it.
So he called Alan, my husband and I talked to a nurse after I woke up for a long while. Then, shakily I met Alan in the cafeteria and we debriefed.
Alan had been in an appointment with another doctor who is helping out with my IVIG infusions. Since Dr. Ben is not employed at the private hospital anymore and he can't admit there at the moment, only at the childrens....I am definitely not having the infusion at the childrens....so this other doctor is helping out by just admitting me but not actually taking over my care. Some of you would know that I find that also very confronting. I don't know what any of you have found with FA...but when you get a new doctor....they want to prode and poke because they want to know about FA and stuff. Well, I find that very invasive and if I know I am going to a new doctor, my barriers come up and they can't get close to me at all. I have had trouble with adult haematologists not knowing anything about FA. But, Alan met with this guy and it turns out he has had experience at the FA clinic in the UK a long time ago....so at least he is familiar with it. That doesn't mean I want him to do anything to me. He has promised that he will allow Dr. Ben to deal with all that and he is just there to help out with the admission for my infusions. So that is good.
I meet the new doctor on Friday when I go in gor my IVIG infusion. That is another confronting situation that I will work through. But, Dr. Ben is coming to visit me in hospital unofficially that night. I stay in hospital for the weekend due to pain reaction to the infusion that is not nice at all. Praise God that I am actually very well with the FA. I have not been sick for ages!!! Praise be to God!
Anway, now that I have talked my head off, I would like to say that I am actually having a really lovely day. The sun is shinning. When Isaac gets up I reckon we will go out.
I am still praying and thinking about Nicholas Boggs, Emma Clifton, Maria Godwin and any other children or adults having problems with their health.
Lots of love,
Charisse
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Friday, July 15, 2005 0:56 AM CDT
Just a quick note to everyone. Thank you to all who have been signing the guestbook. It really puts a smile on my face when I see that you have been to visit me. So please sign the guestbook so I know you have been.....I find it very exciting! HA....and I am 27 years old.
I have been doing ok. I have been having trouble with continued anxiety, however, I know that while I am grieving for my brother and dealing with certain issues surrounding it, it is pretty normal to be upset.
I just wish I didn't feel so tired all the time. This week I really struggled with tiredness and that made it hard to look after my son Isaac who is 2 1/2 years old. Anyway, I ended up having a couple of doctor's appointments. One with my GP....and we are just testing my thyroid and B12 levels to check if that has anything to do with my tiredness (besides the anxiety and depression I have dealt with).
I am still so proud of myself for going on the "tour" of the women's and children's hospital. The psychologist and my doctors tell me that what I did was extremely confronting and that I showed a lot of strength doing what I did. I definitely could not have done without Jesus by my side. Praise the Lord. Please refer to journal history for my walk with Fanconi Anaemia, anxiety, grief and depression.....my battle and achievements, my love for Jesus.
I had an appointment with my son's paediatrician yesterday except it was for me not for Isaac. He does a lot of counselling with me and I was talking with him for just over an hour. It was a really good chat. We approached the issues of Shannon's death, BMT's and some of the difficult experiences that I have had as a child with FA. Some emotional things and stuff I don't want to go in to for now. I was a bit anxious over the whole appointment. Getting symptoms like a painful chest, difficult to breathe in and heart racing. Those symptoms can be very difficult and I wanted to walk away from the appointment but knew I needed to be there. I got through it though!! A great accomplishment for me not to turn away and drive home again when I find something too confronting. I controlled my anxiety very well I think.
Anwyay, on Monday I actually have my first appointment with Dr. Ben, my paediatric Haematologist at the women's and children's hospital. We are taking it slow....instead of having the first appointment in Ronald McDonald House where it is supposed to be, we are having it in general children's outpatients. Yes, I feel quite nervous about the whole thing. It becomes more medical when you are acutally seeing a doctor there and not just a tour. I just need to remember that I am going there as an adult now not as a child. I actually have authority. I can say "NO" if I want. When I was a child it felt like everyone would do whatever they want with you and not consider your own feelings.....as a result I had some invasive things happen which are marked into my memory and I get scared when going for an appointment. I have been rehearsing how my appointment will go.....so I think I will get through.
Well, that is enough for now. I am going to go and read my Bible and spend some time with Jesus.
I would like to just thank my husband, Alan. He is wonderful with me and helps me work through every bit of anxiety that I have. He has seen me in a bad way and has contiued to support me and love me. He continues to help with Isaac. He is a wonderful, Godly man who loves Jesus. He is also a wonderful Godly husband and Father. Bless you Alan and I love you very much. Thank you for your constant patience and love.
Blessings to you all. Praying for you Nicholas Boggs and Emma Clifton, Maria Godwin and all my other FA friends.
Love Charisse
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Friday, July 8, 2005 3:21 AM CDT
Evening everyone,
well, it has been a well worth day today.
Today I met with my social worker from the women's and children's hospital to have a "tour" to help desensitise me to the hospital (my brother died there after a bone marrow transplant.....had FA).
She took me into the places and wards of the hospital which felt threatening to me. I relived a lot of my brother's death and childhood memories since I was treated there as well for FA.
We went to 2 most important places...the Ronald McDonald House and ICU which is where my brother passed away suddenly. We also went to the haematology ward and paediatric outpatients. I had anxiety and even had moments where I cried and felt strange....but it was a positive thing to do. I did it...I faced things for the first time and I did ok.....yeah sure, I had anxiety and felt a bit dizzy at times and stressed and even cried, but I learnt a lot today. I learnt a lot about my suppressed fealings. I faced a lot and I did well. I actually feel good about myself and about the mission I have accomplished.
It doesn't mean that I could just go back there and feel comfortable...but I have taken the first step to dealing with the intense greif I have had over Shannon and things that happened there.
This is where I will be seeing my doctor for a while. I didn't choose that, but it is making me face things I have had buried for a long while.
Even though I don't like the place, I believe Jesus is using this experience to help me heal.
So it was good. Having said that, it is time for me to go.
Bless you all and have a good day or night.
Love Charisse
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Thursday, July 7, 2005 5:02 AM CDT
Hi Everyone,
I haven't updated for a while and thought I should quickly update.
I have been having a hard time. I know to say that might and probably does make family feel upset to hear that. I am sorry.
I have had a lot of anxiety and feeling depressed and it has been getting to a very intense level. Please pray for me.
I had a psychologist appointment today and I don't feel like it has helped at all. Tonight, to be honest, I feel like taking myself down to the hosptial, but I am not going to do that.
I have a headache that just will not go away and my head feels like it will burst and I need some relief.
Sorry to complain but this journal is used to, not only update everyone, but get my feelings out as well and helps me to deal with my feelings. I just don't want people who are closed to me to feel too alarmed or upset about how I feel or am coping.
Reading your messages in my guestbook really lights up my day. I feel encouaraged and loved and that is a big thing when you feel so down.
My platelet count is usually in the 100 000 which is very good and I got a scare when it went down to 60 000 the last couple of weeks. That never usually happens for me and I couldn't understand it. My bone marrow biopsy was really good. So I rang my doctor and he said that it is not a bone marrow problem but rather that, it is suggested, that it is my intense anxiety that is the cause of the problem.....I am not surprised since anxiety is known to have a profound affect on blood counts. However, I was relieved to hear that it was not the marrow causing that problem and the doctor has no doubt that the platelet count will return to the 100 000's when I feel better emotionally.
Tomorrow I am going on a "tour" with my old social worker from the Women's and Children's hospital. That is where I was diagnosed with FA and where my brother died.....of which I am dealing with a lot of grief right now. You would think that it was only yesterday that I lost Shannon instead of it being 11 years ago. You know, if you live in denial about things like this, your body eventually ends up dealing with it and that is what I am doing and it doesn't feel very pleasant at all.
However, I praise God for my excellent health with FA! It is a true testimony to God's goodness.
Oh, I never finished saying about the "tour" with the social worker. My doctor has closed his private practice and I have to go back to the children's to be treated by him and it means facing a whole lot of stuff to do with my brother's death and my own health and "childhood" there. So the social worker is going to help "desensitise" me to the hospital since I have felt very panicked over the whole ordeal. That is happening tomorrow.....which is Friday for me in Australia.
So please keep me in all your prayers. I know that through all this healing will eventually come.
Bless you all.
Please remember Maria Godwin, who has FA, going through treatment for cancer, and please remember and pray for Nicholas Boggs as he adapts to not been able to eat.
Thank you members of Prayer Bears and Angel_Wings for praying for me.
Thank you to Teresa Clifton for being such a great support and friend. She also has a little girl with FA.....Emma Clifton.
Thanks FA Adults....you guys are great!
Bless you all and thank you for keeping me in your prayers.
Love Charisse
Good afternooon everyone,
well, sorry it has taken me so long to update on how I went with the new doctor and my IVIG infusion on the weekend.
I had a tough weekend to be honest. First of all, it took them 3 jabs to get IV access and I honestly didn't think they were going to get the third one in but they did - Praise God!!! It felt weird not having my private paediatric haematologist there...Dr. Ben. Please refer to the journal history in relation to that if you don't know what that is all about.
To be honest I felt vulnerable and upset on Friday. I sat in the chair and I had tears in my eyes as they jabbed me for the IV access. All you children out there who have constant pricks...well done. You do so well because I am an adult and I still cry. As a child, I was also very vulnerable. I was so nervous and relaxed a bit after the IV access was put in. Then the new doctor came over and I felt myself tense up. I had worked so hard to keep calm that day. I kept telling myself that I was safe and ok.
So I went in to see him. I thought it would be a quick hello because he is not supposed to be "looking" after me officially because Dr. Ben still is at the women's and children's hospital. However, he had a lot of questions. My anxiety started to rise but I managed to talk. I fiddled with my hands and felt my mind go blank every now and then. He then started raving on about my blood results and my bone marrow results in really technical terms that I thought Dr. Ben had missed something really serious in the results I had been given. I panicked and spoke loudly at him to STOP!!! I had not heard all my results and Dr. Ben was coming to the hospital to tell me that night. I already struggle with hearing any results, let alone from a new doctor who has not seen an FA patient in 20 years! I disliked my appointment. He was nice but too technical. When I told him that I had pain in my L breast he got all technical telling me that I might land in hospital if I don't hurry up and treat it and so on. Hmm....it made me panic....but I thought, "I will ask Dr. Ben tonight".
Then this guy even forgot that I was in overnight for IVIG reactions and tried to get me to go home. I had Dr. Ben visit. Please keep me in mind for some stuff that I am working through with my health. It is confronting and yet, I know what Jesus has said He will do. I am standing on His word. I don't feel like sharing more than that. Please remember me in your prayers. There are things that I have beaten with FA that doctors are amazed at. I am constantly taking authority over this disease in the Name of Jesus.
Anway, I had my reaction. I was so anxious that night and I had so much pain all over my body. I get a bit cross when I am in pain and anxious. So I refused IV sedation and fell asleep at 2am in the morning. Alan, my husband stayed with me and he said I woke every hour all night. I had so much pain meds and stuff and I still felt awful. Then the next morning, the nurse waltzed on in saying that I needed to get up anyway. I had had hardly any sleep. I was in hospital for crying out loud....I can sleep in. Well, I couldn't move properly and I heard her argueing with Alan about my steroids that I take....she was a real pain. I am an RN so I don't think I was being unjust. Anyway, she finally did my blood pressure and it was only 82/52...it was low...no wonder I felt so awful and couldn't get out of bed. It went up to 99/60 towards lunch and then she didn't check it again. But I reckon it went up a bit further because after lunch I could finally, dizzily have a shower and lie on the bed.
So, I felt tense about stuff. I didn't like the new doctor. At least he didn't attempt to touch me or anything. I had a hard time once I got home. I had some real emotional issues and the IVIG reaction was still bothering me. I missed church and suffered a bad headache and couldn't see and it just was not nice.
I had BMT issues in my face - I was grieving a lot about my brother.....I ended up getting so cross about somethings that happened way back then...in 1994...I also struggled with feeling the fear and emotion around having FA myself. There are times I feel really scared about FA.
But, I just want to say this. I might have FA. Yes, it threatens my life in lots of ways. You know, even just the medical information about FA threatens me. I am praying for all FA patients out there and for myself. I have set myself on a journey that this disease will not have its own way...I have beaten many odds about FA already. I will continue to beat them with Jesus right by my side. There is always hope with Jesus.
Oh yeah, so despite my little speech....the other thing that I was worried about was my L breast. I have struggled with mastitis and thrush in this breast since Isaac bit me about 6 months ago. It has been good for about 2 months I think and then last Wednesday it flared up again and there was so much pain. I started to worry. I started to worry that I actually had cancer with the risks and all with FA. So Dr. Ben said to get a breast ultrasound. I did that yesterday and everything is fine. No cancer just the thrush again. So I am back on medication for that. Praise God. Let's pray that the thrush vanishes forever now!!
Oh yes, and today I saw Dr. Smiley with Isaac. As some of you know he was 13 weeks early so he has regular paediatric check ups with Dr. Smiley. He was given a good report. He could be talking a bit better but he is fine. On top of that I had a good talking session with Dr. Smiley about some of my emotional issues (he often meets with me to discuss). We talked about America. Since in 2 1/2 weeks Alan, Isaac and I leave for Camp Sunshine in Cascoe Maine. I also gave him an updated book on FA. He was like an excited child. Hehe....he was so excited about the book and how he was going to have some good, night reading...funny to see them so excited over a medical book.
Anyway, I am such a talker!! I really need to go. Know that I am thinking about the adults and children beating diseases and disorders.
Bless you all and have a good day.
Love Charisse
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Tuesday, July 19, 2005 8:30 PM CDT
***UPDATE*** Saturday 23rd July
Hi Everyone.
I have just gotten home tonight after spending Friday and most of today in hospital having my IVIG infusion and then recovering. Since I get a reaction to the infusions and suffer form severe pain over my whole body and then my anxiety increases. I will update about how my visit went tomorrow or the next day. I had a few challenges and I must say that I didn't have the nicest time in hospital. I met the new doctor involved and I can only say that he was ok. But I will go into more detail about how I handled my anxiety and all. I am tired and will update soon. I also received finally, the cytogenetic results of my bone marrow. But,as I said, I will update on that later.
Love Charisse
Hello All,
thought I would update you all on how I went with seeing Dr. Ben on Monday at the women's and children's hospital.
Once again, in case you forgot, this was my first time attending the children's section for a medical appointment. I went on a "tour" to help desensitise myself to the environment a couple of weeks ago. There are so many memories there, including the tragic death of my brother, Shannon.
It was a challenging day. I accomplished a lot, however, it took a huge toll on my body and mind and I have felt quite tired from the whole ordeal. So I will explain what happened.
First of all, I drove in by myself. Before I left home, I felt quite nervous so I put some worship songs on in my car and sang to them at the top of my lungs all the way to the hospital. It takes about 40 mins to get there.
Once I was there, it was fine walking to the hospital, but once I got into the main entrance I had to start dealing with anxiety issues. HA.....you have to laugh sometimes. I walked back and forth, back and forth around the main entrance. I couldn't seem to get myself to walk "IN" properly. I had a small giggle to myself thinking that I must look so silly, this lady just walking up and down at the main entrance. Then I felt disorientated!! This is very typical of the anxiety I get. Sometimes disorientation leads to dissociation and I don't feel like I am actually there, everything is in slow motion, I don't feel real. It is a strange feeling. Anyway, I had disorientation. I knew where outpatients was but I couldn't remember how to get there. Now this hospital is imprinted on my mind. I know it inside out and upside down pretty much. I looked at the time, it was 3.30pm. I was supposed to be at the appointment. Hehe....I saw a cleaner and asked where outpatients was and she said just down the hallway. HA....how easy is that.
Well, on my way I found myself walking very slow. Memories of being a child and a patient were fresh in my mind. I felt scared but convinced myself that I was ok and I am an adult now and no one can do anything to me without my authority. That was a big thing when I was a child. I didn't like it when doctors did "what they want" when I felt vulnerable and exposed. So I was scared it would happen again, but this time I am an adult.
I got to outpatients and quietly said who I was and sat down. It was so overwhelming and I put my hands to my face and just cried. I couldn't believe that I was back in this hospital again, as a patient, where Shannon died and where I remember so much invasion as a child. The nurses were wonderful. They didn't overwhelm me. She led me to a quiet room where I could cry without interruption.
I then gathered myself together and Dr. Ben walked in. I had stopped crying. Unfortunately, Dr Ben is the Fanconi Anaemia doctor to me. He is extremely nice and polite and kind. He is not threatening in anyway. But I struggle to talk to him when I am in confronting situations. Like, I can't face him to hear bone marrow results. It is too confronting. This time it was confronting because the environment felt confronting. He talked with me and was soooo pleased and expressed so much excitement that I had driven myself. Proclaiming that it was such an achievement that I had even made it here. He said not to be too hard on myself with having difficulty talking because getting here was a huge accomplishment, and the fact that I was even in the appointment was more than he expected me to do. I felt good about that. I did manage to talk eventually, in broken sentences. It was very overwhelming but I think I did well. I had to concentrate soooo hard not to hyperventilate so I would shut my eyes for long periods to get control of that. I would fiddle with my hands and my chest felt sore and tight. But I managed to sit there and have a broked conversation. That is an achievement. I am sure that when Dr. Ben said that he had to leave his private practice and do more hours at the childrens.....it was Jesus trying to get me to confront my grief and fears at this hospital and it is sure not easy.
I had some questions about the genetics of FA and he answered them for me. It was so involved and finally, at one point when I asked a very confronting question, he answered it, my body said, "that is enough". I started getting dissociation. I could hear him talking to me, but he sounded far away, I felt heat rise in my cheeks and I suddenly felt like I was not there. When I opened my eyes, things were blurry and I knew, "oh no....I am going to topple over". When I have high anxiety.....I suffer from conversion reactions where the anxiety and stuff is so high that it disrupts your physiology and you collapse. Except this time I was going to take control of the situation and said to him that I was feeling unwell and needed to lie down. Unfortunately, on the way to the bed, that was it, I went, I collapsed......so anyway, despite that.....even with that....I did so well...instead of just collapsing I was able to try and take control of the situation. My pyschologist says that is the key to making you feel proud of yourself. When you can detect something before it happens and try and do something about it.
So he called Alan, my husband and I talked to a nurse after I woke up for a long while. Then, shakily I met Alan in the cafeteria and we debriefed.
Alan had been in an appointment with another doctor who is helping out with my IVIG infusions. Since Dr. Ben is not employed at the private hospital anymore and he can't admit there at the moment, only at the childrens....I am definitely not having the infusion at the childrens....so this other doctor is helping out by just admitting me but not actually taking over my care. Some of you would know that I find that also very confronting. I don't know what any of you have found with FA...but when you get a new doctor....they want to prode and poke because they want to know about FA and stuff. Well, I find that very invasive and if I know I am going to a new doctor, my barriers come up and they can't get close to me at all. I have had trouble with adult haematologists not knowing anything about FA. But, Alan met with this guy and it turns out he has had experience at the FA clinic in the UK a long time ago....so at least he is familiar with it. That doesn't mean I want him to do anything to me. He has promised that he will allow Dr. Ben to deal with all that and he is just there to help out with the admission for my infusions. So that is good.
I meet the new doctor on Friday when I go in gor my IVIG infusion. That is another confronting situation that I will work through. But, Dr. Ben is coming to visit me in hospital unofficially that night. I stay in hospital for the weekend due to pain reaction to the infusion that is not nice at all. Praise God that I am actually very well with the FA. I have not been sick for ages!!! Praise be to God!
Anway, now that I have talked my head off, I would like to say that I am actually having a really lovely day. The sun is shinning. When Isaac gets up I reckon we will go out.
I am still praying and thinking about Nicholas Boggs, Emma Clifton, Maria Godwin and any other children or adults having problems with their health.
Lots of love,
Charisse
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Friday, July 15, 2005 0:56 AM CDT
Just a quick note to everyone. Thank you to all who have been signing the guestbook. It really puts a smile on my face when I see that you have been to visit me. So please sign the guestbook so I know you have been.....I find it very exciting! HA....and I am 27 years old.
I have been doing ok. I have been having trouble with continued anxiety, however, I know that while I am grieving for my brother and dealing with certain issues surrounding it, it is pretty normal to be upset.
I just wish I didn't feel so tired all the time. This week I really struggled with tiredness and that made it hard to look after my son Isaac who is 2 1/2 years old. Anyway, I ended up having a couple of doctor's appointments. One with my GP....and we are just testing my thyroid and B12 levels to check if that has anything to do with my tiredness (besides the anxiety and depression I have dealt with).
I am still so proud of myself for going on the "tour" of the women's and children's hospital. The psychologist and my doctors tell me that what I did was extremely confronting and that I showed a lot of strength doing what I did. I definitely could not have done without Jesus by my side. Praise the Lord. Please refer to journal history for my walk with Fanconi Anaemia, anxiety, grief and depression.....my battle and achievements, my love for Jesus.
I had an appointment with my son's paediatrician yesterday except it was for me not for Isaac. He does a lot of counselling with me and I was talking with him for just over an hour. It was a really good chat. We approached the issues of Shannon's death, BMT's and some of the difficult experiences that I have had as a child with FA. Some emotional things and stuff I don't want to go in to for now. I was a bit anxious over the whole appointment. Getting symptoms like a painful chest, difficult to breathe in and heart racing. Those symptoms can be very difficult and I wanted to walk away from the appointment but knew I needed to be there. I got through it though!! A great accomplishment for me not to turn away and drive home again when I find something too confronting. I controlled my anxiety very well I think.
Anwyay, on Monday I actually have my first appointment with Dr. Ben, my paediatric Haematologist at the women's and children's hospital. We are taking it slow....instead of having the first appointment in Ronald McDonald House where it is supposed to be, we are having it in general children's outpatients. Yes, I feel quite nervous about the whole thing. It becomes more medical when you are acutally seeing a doctor there and not just a tour. I just need to remember that I am going there as an adult now not as a child. I actually have authority. I can say "NO" if I want. When I was a child it felt like everyone would do whatever they want with you and not consider your own feelings.....as a result I had some invasive things happen which are marked into my memory and I get scared when going for an appointment. I have been rehearsing how my appointment will go.....so I think I will get through.
Well, that is enough for now. I am going to go and read my Bible and spend some time with Jesus.
I would like to just thank my husband, Alan. He is wonderful with me and helps me work through every bit of anxiety that I have. He has seen me in a bad way and has contiued to support me and love me. He continues to help with Isaac. He is a wonderful, Godly man who loves Jesus. He is also a wonderful Godly husband and Father. Bless you Alan and I love you very much. Thank you for your constant patience and love.
Blessings to you all. Praying for you Nicholas Boggs and Emma Clifton, Maria Godwin and all my other FA friends.
Love Charisse
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Friday, July 8, 2005 3:21 AM CDT
Evening everyone,
well, it has been a well worth day today.
Today I met with my social worker from the women's and children's hospital to have a "tour" to help desensitise me to the hospital (my brother died there after a bone marrow transplant.....had FA).
She took me into the places and wards of the hospital which felt threatening to me. I relived a lot of my brother's death and childhood memories since I was treated there as well for FA.
We went to 2 most important places...the Ronald McDonald House and ICU which is where my brother passed away suddenly. We also went to the haematology ward and paediatric outpatients. I had anxiety and even had moments where I cried and felt strange....but it was a positive thing to do. I did it...I faced things for the first time and I did ok.....yeah sure, I had anxiety and felt a bit dizzy at times and stressed and even cried, but I learnt a lot today. I learnt a lot about my suppressed fealings. I faced a lot and I did well. I actually feel good about myself and about the mission I have accomplished.
It doesn't mean that I could just go back there and feel comfortable...but I have taken the first step to dealing with the intense greif I have had over Shannon and things that happened there.
This is where I will be seeing my doctor for a while. I didn't choose that, but it is making me face things I have had buried for a long while.
Even though I don't like the place, I believe Jesus is using this experience to help me heal.
So it was good. Having said that, it is time for me to go.
Bless you all and have a good day or night.
Love Charisse
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Thursday, July 7, 2005 5:02 AM CDT
Hi Everyone,
I haven't updated for a while and thought I should quickly update.
I have been having a hard time. I know to say that might and probably does make family feel upset to hear that. I am sorry.
I have had a lot of anxiety and feeling depressed and it has been getting to a very intense level. Please pray for me.
I had a psychologist appointment today and I don't feel like it has helped at all. Tonight, to be honest, I feel like taking myself down to the hosptial, but I am not going to do that.
I have a headache that just will not go away and my head feels like it will burst and I need some relief.
Sorry to complain but this journal is used to, not only update everyone, but get my feelings out as well and helps me to deal with my feelings. I just don't want people who are closed to me to feel too alarmed or upset about how I feel or am coping.
Reading your messages in my guestbook really lights up my day. I feel encouaraged and loved and that is a big thing when you feel so down.
My platelet count is usually in the 100 000 which is very good and I got a scare when it went down to 60 000 the last couple of weeks. That never usually happens for me and I couldn't understand it. My bone marrow biopsy was really good. So I rang my doctor and he said that it is not a bone marrow problem but rather that, it is suggested, that it is my intense anxiety that is the cause of the problem.....I am not surprised since anxiety is known to have a profound affect on blood counts. However, I was relieved to hear that it was not the marrow causing that problem and the doctor has no doubt that the platelet count will return to the 100 000's when I feel better emotionally.
Tomorrow I am going on a "tour" with my old social worker from the Women's and Children's hospital. That is where I was diagnosed with FA and where my brother died.....of which I am dealing with a lot of grief right now. You would think that it was only yesterday that I lost Shannon instead of it being 11 years ago. You know, if you live in denial about things like this, your body eventually ends up dealing with it and that is what I am doing and it doesn't feel very pleasant at all.
However, I praise God for my excellent health with FA! It is a true testimony to God's goodness.
Oh, I never finished saying about the "tour" with the social worker. My doctor has closed his private practice and I have to go back to the children's to be treated by him and it means facing a whole lot of stuff to do with my brother's death and my own health and "childhood" there. So the social worker is going to help "desensitise" me to the hospital since I have felt very panicked over the whole ordeal. That is happening tomorrow.....which is Friday for me in Australia.
So please keep me in all your prayers. I know that through all this healing will eventually come.
Bless you all.
Please remember Maria Godwin, who has FA, going through treatment for cancer, and please remember and pray for Nicholas Boggs as he adapts to not been able to eat.
Thank you members of Prayer Bears and Angel_Wings for praying for me.
Thank you to Teresa Clifton for being such a great support and friend. She also has a little girl with FA.....Emma Clifton.
Thanks FA Adults....you guys are great!
Bless you all and thank you for keeping me in your prayers.
Love Charisse
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