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
