Saturday, December 23, 2006 2:17 AM CST
My dad is doing much better now thank you.
It is good to be able to be a family again and not worry about people being so sick in the family.
Most of you would know about my sleeping problem. I appreciated all the advice, support and love when I had that really bad bout of sleeping. My sleeping problem is anxiety and stress related and I am on some medication to help that. This issue is a long term thing because it is all related to the stress and anxiety that I deal with in relation to FA. Some weeks it is really, really bad and other weeks it is much better. Unfortunately last weekend it was very bad and I was very stressed and sleep deprived. The doctor says that when I really get anxious the medication becomes over-ridden and so it will not work...unless you have a GA or something like that. That is why I was so distressed...I also had a huge panic attack along with it. Alan told me that it was a very traumatic night. It is amazing because I remember it and then there are some things I don't remember.
However, I have slept better this week and the new medication that the doctor has tried me on is working. I just need to be able to keep doing my cognitive behavioural therapy, my walking and so on along with it!
I want to say again, thank you to all on the FA group who have offered me support and helped me out....it is much appreciated. It really helps my anxiety to just know that there are others out there like me...so thank you. Thank you also to Prayer Bears who are very faithful in supporting me and praying for me. Thank you to my family who faithfully pray for me and go out their way to help me rest. Thank you mostly to my husband, Alan. He is always there with me. When I am the most anxious he helps me deal with it and most times this is not easy. So thank you Alan.
Ok, tomorrow is Christmas Eve here in Australia. Today Alan, Isaac and I went to Alan's dad's for lunch. It was a good day. It was our Christmas gathering with his dad and partner. Oh what wonderful gifts for us all. We enjoyed exchanging gifts and having a scrumptous meal...Isaac LOVED the upside down pineaple cake. It was really nice. We were there from 1230 to 3pm and then we went to Isaac's great nanna Howard-Jones to give her Christmas gift. Isaac's gift from her is with us and we will put it under the tree on Christmas Eve with the rest.
Tomorrow we have church...Christmas Eve service...in the morning....my sister and I are singing an item and Alan and the children's church have some little production thing happening. Then Sunday night at home...put the presents under the Christmas tree and a busy day on Christmas day! We will have the morning to ourselves....just to be a family...and lunch with my parents and family and dinner with Alan's family! (mum's side). Isaac will be exhausted by the end of it all.
I thouroughly enjoyed spending the day with my sister on Friday just gone. It was also nice to have Alan's mum over as well for lunch and a bit of the afternoon. Liesl and I practiced our item for church, Eliana fed, Denise came, we had lunch and then picked Isaac up from child care and then he went to sleep, Denise went shopping, Elian went shopping with her daddy for Liesl and Liesl and I lounged in the lounge and watched the new "Superman"...heehe.......a good day! I hope all that made sense.
Well now I am going to go.....we have to have dinner, Isaac needs a bath and after such a busy day...we need to relax and I need to sleep well tonight!
Please keep Rachel and Tyler and Benjamin....Nina's family in your prayers. Nina passsed away this week and my heart goes out to them. It is a hard time for this to happen...it is hard whenever it happens...but please keep them in prayer. Nina had FA and was the sweetest little girl. I had the pleasure to meet her at FA camp last year and go to the zoo with them and spend some time at their house.
Ok, love you all and I really pray that you have a very good Christmas...the best that you can have in whatever your situation is. Jesus is faithful. I have found Him to be most comforting in the worst situations.
Merry Christmas,
Love Charisse
--------------------------------------------------------------------------------
Wednesday, December 6, 2006 6:03 AM CST
Hello All,
what a rough couple of weeks our family has had. It feels like it will never end. I mean, it has been a couple of months really. In the bout of Alan having Chicken pox and Isaac....I started having insomnia problems which always affects my mouth and health. I had 3 weeks of constant problems every night and ended up with bad mouth ulcers throughout my whole mouth. The pain has been unbearable. Obviously I am bearing it but with a lot of difficulty. Pain, when going for too long...like this makes me depressed. I am very prone to depression with all the issues of FA. On Monday I didn't think I could put up with anything anymore. I rang Alan at work and felt so cross and had tears...it was a moment of panic. The ulcers have been so bad that no pain relief has been helping and I think this is the problem. I had morphine tablets and it still did not touch the pain...but it made me have a hang over which made me depressed and then I am stuck in this cycle! I have Isaac to care for and it is not a good cycle....in fact it is an unhealthy cycle. So I stopped those tablets and are just taking digesic which is still very strong and has side effects...but still the pain is hardly touched. I am on numerous stuff for these ulcers now...antibiotics and antifungal.....antseptic mouth washers and anaesthetic mouth wash....it just has to heal and for FA it is twice the healing time of a normal persone. Mouth ulcers has always been a problem when I am stressed and run down!
Please pray that they clear up soon. I feel like my cheeks are swollen and I can't talk properly and I feel miserable.
My dad has been very sick! They are not sure what he has had but suggested some liver virus. He has been told he is not allowed near me..nor is my mum in case she is habouring the virus. He gets more test results back soon. It always feels a bit scary and you worry...I love my dad and don't want anything to ever happen to him. He is the Senior Pastor of our church....a big African church with about 400 people in it. He is an amazing person and it is so hard to see him sick. So please pray that he will get well soon. He has been very sick. It looks like he may be getting better but it has been rough going. It is also hard to not have mum around too. I love my mum and have missed her heaps as well. I miss both mum and dad.
Liesl, my sister, is going well with her baby, Eliana. Tim is also good (husband). They came here yesterday because I was feeling so down...just to give me some support. Isaac wanted to help with the baby and watch her have a bath and watch Liesl feed and help Tim with everything. He loves his Uncle Tim and seems to be competeing for attention. He had a fun time in the bath.....Uncle Tim and him (Tim was not in the bath) were squirting water at each other and Isaac was squealing with delight! We had tea together and I got to be an Aunty. I love Eliana. She is sweet and she likes to look at me. I love to cuddle her and help dress her and help Liesl with different things. When Tim goes back to work next week we will probably see more of each other....especially since mum is not allowed near them either. Oh yes, dad is not allowed near the baby and Liesl either. We are all a very tight nitted family and so it is hard when we all have to be separated......due to sickness. We are very close. We are praying that dad is feeling better by Christmas. It has been very unfortunate for us all....especially dad...he has been very sick...we love you dad.
Well, I am going to put new pictures of the baby and Isaac and us all in the photo section.
Please keep praying for our family. Every Thursday night our family and church folk meet for a prayer meeting and target FA and the well being of our family. As I said in my last journal....our roots in Christ go deep down and as long as that happens...we don't need to worry. However, Jesus asks us to pray and keep praying for the sick and for miracles...that is what we do as a family. So please join us in prayer.....prayer for my dad, prayer that I will be healed from FA. Prayer that Isaac and Alan will be well and protected and grow in God. Prayer that Liesl and Tim will love being parents and grow in God and be blessed and that Eliana will be blessed by God too. In this life, it is a battle....a Spiritual battle I believe. Therefore, we cannot stop praying...our passion is prayer.
Hope you didn't mind me sharing that with you guys.
Love you heaps and don't forget to check out the photos....in the process of being put up there so see if they are there yet!
Love Charisse
Sunday, December 31, 2006
Thursday, November 30, 2006
November 2006 entries
Tuesday, November 21, 2006 11:49 PM CST
Hello!
What a busy time we have had since Liesl's baby has been born. She came home today...so they will start a new life and routine at home now. The baby is doing well.
As for me...I am doing ok. I always get very emotional when babies are born! I am ready for a second baby myself and it feels frustrating that circumstances with FA can get in the way of your dreams. Sometimes it doesn't stop your dream but just delays it...others struggle to see their dreams fulfilled! Hope! Never give up hope to follow your dreams. If parents are reading this..never give up hope on your child to accomplish what they want to in life. If an FA teenager is reading this.....it can be an emotional journey with FA but never give up hope on building your life, marrying, getting a job, being with family, having a baby. If you are an FA adult! Well....go for your dreams that you have not fulfilled yet! I cannot ever let my dreams be taken away. I feel easily sad and depressed and I feel devastated when I can't see my dream and when I feel there is no hope.
I was reading my Bible and doing my devotions by myself while Isaac was asleep today. in fact Isaac is still asleep but I really felt like I wanted to share with you the inspiration that I have felt from my time with God today.
Firstly, I have been reading a lot about trees in the Bible. Hehe...sounds funny but it really is very inspirational.
Jeremiah 17: verses 7 to 8..."Blessed is the man who trusts in the Lord, whose confidence is in Him. He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when the heat comes, its leaves are always green. It has no worries in a year of drought and never fails to bear fruit".
I really like this passage and I will not share the intimate things that I wrote in my journal concerning everything about my life. One thing I do want to share is that I am a born-again Christian. Jesus is my Saviour and Lord. My faith is a huge and very serious part of my life and part of my walk with FA. I often "see" myself crying or being overwhelmed by FA and by circumstances. Circumstances cause me grief and I cry uncontrollably sometimes. But today The Bible inspired me to take another look at my life. This verse is talking about a child of God...like me...who trusts in the Lord....I mean, think about a tree.. They have deep roots and are drawing on life giving water under the soil. In a drought their roots are SO deep that they still get what they need when everything else is drying up! It doesn't die. There is a lot of strength there and a lot of "fruit". It does not have to fear because its roots are so deeply planted. This passage talks about how children of God...men and women who have Jesus as their Lord and Saviour and compares them to be like a tree. I can picture another side of myself. No matter what happens on this FA journey...I have never ever felt like I want to turn away from God. He, soley, has been my strength. This is serious stuff.....my roots are so deeply planted into my God, that even though I may seem flustered on the outside at times....I have nothing to fear. This is a calming thought for me.
I would not usually share about all of this so much on this online journal. But today, it felt right to share.
Anyway, enough about that.....hehe...unfortunately I had a fall on Sunday. My deck chair gave way..the material broke and I fell with Isaac on my lap into the metal frame of the chair, hurting my back quite badly...and my arms and neck. I have a big black bruise on my back. I was protecting Isaac on the fall down so I fell weird and feel very sore.
Otherwise, back to normal living!
Love you all and have a good week.
Love Charisse
--------------------------------------------------------------------------------
Friday, November 17, 2006 6:48 AM CST
Hello!!!!
Exciting news! My sister had her baby today at 4.30pm on the 17th November. It was a long labour but she is doing well. Baby was a bit shocked after the labour and needed oxygen and is resting in the nursery. Liesl has breastfed and she looked like she latched on great. I bought has some clothes for the baby tonight. OH...she had a baby girl. Her name is Eliana Liesl Christie. She weighed 8 poun 4 oz. She was 51 cms long. She is gorgeous with her dark, black hair and a lot of it too! We didn't get to hold her tonight.....she was resting. Liesl looked a bit tired and so did Tim...but it is all very exciting.
More good news....Alan has the clearance from the doctor that he no longer is contagious with the chicken pox. It is over and gone and he is feeling much better...what a relief.
Since I heard that my sister was in labour I literally wept all day. I have not been able to contain my emotions. When I saw her I burst out crying and couldn't talk properly....not just tears...but real cover your face and cry....I wept on the way home and I cried full on cry when I got home. The tears come out of my eyes without control. That is a woman for you...and also all my feelings about having another baby coming out....joy and grief over FA and desires. I cannot wait until my sister is at home. Isaac has not seen her yet. I took a video and showed him it and he is excited that "baby is out of Liesl's tummy now?".....we will probably take him in tomorrow to see her and the baby.
Welcome to Tyler Junior,.....Teresa and Tyler and Emma have a new baby in their house. Congratulations to them as well. The Cliftons! It is wonderful. I cried full on when I heard that Tyler had come into this world.
Well I need to calm down and have some sleep. I had infusion today and am feeling very shaky.
Love you all,
Charisse
--------------------------------------------------------------------------------
Saturday, November 11, 2006 11:14 PM CST
***NEW PICTURES - of Isaac's birthday and of the Christmas Pageant***
I am actually feeling really down today. I am not feeling my usual self at all. This down feeling is so overwhelming.
Alan still has chicken pox. He is still getting new spots. He can't go near anyone. We both feel very down about that. I hope it is over soon. Alan is feeling better as in he is not feeling unwell anymore...but he is very itchy and has lots of spots!
Isaac is doing well. He is asleep right now. He is enjoying playing with all his new gifts from his birthday. We rescheduled his birthday party to the 25th November. We will have a cake and celebrate his birthday with his little friends after all this chicken pox is over.
Liesl's due date is today with her baby. Although we know babies don't always come on their due date. She is really ready for that baby to come out now. We are just waiting.
Anyway, I better go. Please leave a message to say hello. It really brightens my day when I read them and today I am especially low.
Bless you all and update soon.
Love Charisse
--------------------------------------------------------------------------------
Tuesday, November 7, 2006 4:48 AM CST
***UPDATE***
Wednesday 8th November
Alan has chicken pox! He broke out in spots today. On his scalp, his chest, back, arms.....so this is why he has been feeling so yucky. Actually, because Isaac had chicken pox we had been watching out for this. Alan had never had chicken pox....well now he has it...and on Isaac's 4th birthday. Despite Alan feeling so off and not being able to go near anyone...Isaac had a good birthday. He opened his presents with us this morning and was very excited over his Thomas accessories...and totetum tennis....we had to cancel his friends coming over because of Alan's chicken pox...but Isaac and I still went to kindergym. His friends gave him his presents there and He wore a badge that said he was "4 Today". He was very excited. We came home and had lunch with daddy and put candles on the cake and sang "Happy Birthday"....and then Isaac and I went to my sister's house to let daddy have a rest because he was feeling wiped out again. Isaac had a sleep at my sister's house and Liesl and I watched, "Sense and Sensibility"...one of those girl movies (hey Alan likes it too!). That was nice. Then Uncle Tim came home from work and Isaac woke up and they gave him his birthday present...which Isaac loved....we then came home. Isaac is now in bed and Alan and I are relaxing. Please pray that Alan does not suffer with chicken pox for long. I am safe from the chicken pox. I have already had it and when Isaac broke out I had the zooster immunoglobulin injection to protect me and the doctor says that I am still protected from this outbreak of Alans...so that is good.
Happy Birthday to Jacy Box! Happy Birthday for the 8th of November as well!
Ok, I am off to relax!
Love Charisse
***
Hello All,
I have not had much time to update. I had my gynae surveillance and so far so good. I should get some other results back in a couple of weeks.
Isaac is over the chicken poxs completely. Both Alan and I have felt really tired lately...my neutriphils dropped a bit and I have had some ulcers....could be any virus I have come in contact with that has done that...like chicken pox....but I have not caught anything and I may not necessarily catch anything....body could be just working to keep me well..and will go back up again.
Alan is not feeling too well though. He has felt like he has had the flu. But not the flu. He came home from work early today. It is unusual for Alan to feel this way. So I went out and bought him a "get well" present. Hopefully it won't be anything too much.
Isaac's birthday is tomorrow! He turns 4 years old! We have kindergym tomorrow. We will give him his presents in the morning, go to kindergym, and then come home and one of his friends from kindergym is coming over with his mum for lunch. And my sister may be coming too. Then on Saturday we have a group of kids from church coming over and Isaac will have a cake and stuff. It will be fun.
We don't have Thanksgiving here in Australia...so our BIG Christmas Pageant was on the 4th November. Isaac loved it! I have new pictures to put up.
My sister is 39 weeks pregnant now....and a few days...any day the baby should come...it is exciting!
Well, got to go!
Love Charisse
Hello!
What a busy time we have had since Liesl's baby has been born. She came home today...so they will start a new life and routine at home now. The baby is doing well.
As for me...I am doing ok. I always get very emotional when babies are born! I am ready for a second baby myself and it feels frustrating that circumstances with FA can get in the way of your dreams. Sometimes it doesn't stop your dream but just delays it...others struggle to see their dreams fulfilled! Hope! Never give up hope to follow your dreams. If parents are reading this..never give up hope on your child to accomplish what they want to in life. If an FA teenager is reading this.....it can be an emotional journey with FA but never give up hope on building your life, marrying, getting a job, being with family, having a baby. If you are an FA adult! Well....go for your dreams that you have not fulfilled yet! I cannot ever let my dreams be taken away. I feel easily sad and depressed and I feel devastated when I can't see my dream and when I feel there is no hope.
I was reading my Bible and doing my devotions by myself while Isaac was asleep today. in fact Isaac is still asleep but I really felt like I wanted to share with you the inspiration that I have felt from my time with God today.
Firstly, I have been reading a lot about trees in the Bible. Hehe...sounds funny but it really is very inspirational.
Jeremiah 17: verses 7 to 8..."Blessed is the man who trusts in the Lord, whose confidence is in Him. He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when the heat comes, its leaves are always green. It has no worries in a year of drought and never fails to bear fruit".
I really like this passage and I will not share the intimate things that I wrote in my journal concerning everything about my life. One thing I do want to share is that I am a born-again Christian. Jesus is my Saviour and Lord. My faith is a huge and very serious part of my life and part of my walk with FA. I often "see" myself crying or being overwhelmed by FA and by circumstances. Circumstances cause me grief and I cry uncontrollably sometimes. But today The Bible inspired me to take another look at my life. This verse is talking about a child of God...like me...who trusts in the Lord....I mean, think about a tree.. They have deep roots and are drawing on life giving water under the soil. In a drought their roots are SO deep that they still get what they need when everything else is drying up! It doesn't die. There is a lot of strength there and a lot of "fruit". It does not have to fear because its roots are so deeply planted. This passage talks about how children of God...men and women who have Jesus as their Lord and Saviour and compares them to be like a tree. I can picture another side of myself. No matter what happens on this FA journey...I have never ever felt like I want to turn away from God. He, soley, has been my strength. This is serious stuff.....my roots are so deeply planted into my God, that even though I may seem flustered on the outside at times....I have nothing to fear. This is a calming thought for me.
I would not usually share about all of this so much on this online journal. But today, it felt right to share.
Anyway, enough about that.....hehe...unfortunately I had a fall on Sunday. My deck chair gave way..the material broke and I fell with Isaac on my lap into the metal frame of the chair, hurting my back quite badly...and my arms and neck. I have a big black bruise on my back. I was protecting Isaac on the fall down so I fell weird and feel very sore.
Otherwise, back to normal living!
Love you all and have a good week.
Love Charisse
--------------------------------------------------------------------------------
Friday, November 17, 2006 6:48 AM CST
Hello!!!!
Exciting news! My sister had her baby today at 4.30pm on the 17th November. It was a long labour but she is doing well. Baby was a bit shocked after the labour and needed oxygen and is resting in the nursery. Liesl has breastfed and she looked like she latched on great. I bought has some clothes for the baby tonight. OH...she had a baby girl. Her name is Eliana Liesl Christie. She weighed 8 poun 4 oz. She was 51 cms long. She is gorgeous with her dark, black hair and a lot of it too! We didn't get to hold her tonight.....she was resting. Liesl looked a bit tired and so did Tim...but it is all very exciting.
More good news....Alan has the clearance from the doctor that he no longer is contagious with the chicken pox. It is over and gone and he is feeling much better...what a relief.
Since I heard that my sister was in labour I literally wept all day. I have not been able to contain my emotions. When I saw her I burst out crying and couldn't talk properly....not just tears...but real cover your face and cry....I wept on the way home and I cried full on cry when I got home. The tears come out of my eyes without control. That is a woman for you...and also all my feelings about having another baby coming out....joy and grief over FA and desires. I cannot wait until my sister is at home. Isaac has not seen her yet. I took a video and showed him it and he is excited that "baby is out of Liesl's tummy now?".....we will probably take him in tomorrow to see her and the baby.
Welcome to Tyler Junior,.....Teresa and Tyler and Emma have a new baby in their house. Congratulations to them as well. The Cliftons! It is wonderful. I cried full on when I heard that Tyler had come into this world.
Well I need to calm down and have some sleep. I had infusion today and am feeling very shaky.
Love you all,
Charisse
--------------------------------------------------------------------------------
Saturday, November 11, 2006 11:14 PM CST
***NEW PICTURES - of Isaac's birthday and of the Christmas Pageant***
I am actually feeling really down today. I am not feeling my usual self at all. This down feeling is so overwhelming.
Alan still has chicken pox. He is still getting new spots. He can't go near anyone. We both feel very down about that. I hope it is over soon. Alan is feeling better as in he is not feeling unwell anymore...but he is very itchy and has lots of spots!
Isaac is doing well. He is asleep right now. He is enjoying playing with all his new gifts from his birthday. We rescheduled his birthday party to the 25th November. We will have a cake and celebrate his birthday with his little friends after all this chicken pox is over.
Liesl's due date is today with her baby. Although we know babies don't always come on their due date. She is really ready for that baby to come out now. We are just waiting.
Anyway, I better go. Please leave a message to say hello. It really brightens my day when I read them and today I am especially low.
Bless you all and update soon.
Love Charisse
--------------------------------------------------------------------------------
Tuesday, November 7, 2006 4:48 AM CST
***UPDATE***
Wednesday 8th November
Alan has chicken pox! He broke out in spots today. On his scalp, his chest, back, arms.....so this is why he has been feeling so yucky. Actually, because Isaac had chicken pox we had been watching out for this. Alan had never had chicken pox....well now he has it...and on Isaac's 4th birthday. Despite Alan feeling so off and not being able to go near anyone...Isaac had a good birthday. He opened his presents with us this morning and was very excited over his Thomas accessories...and totetum tennis....we had to cancel his friends coming over because of Alan's chicken pox...but Isaac and I still went to kindergym. His friends gave him his presents there and He wore a badge that said he was "4 Today". He was very excited. We came home and had lunch with daddy and put candles on the cake and sang "Happy Birthday"....and then Isaac and I went to my sister's house to let daddy have a rest because he was feeling wiped out again. Isaac had a sleep at my sister's house and Liesl and I watched, "Sense and Sensibility"...one of those girl movies (hey Alan likes it too!). That was nice. Then Uncle Tim came home from work and Isaac woke up and they gave him his birthday present...which Isaac loved....we then came home. Isaac is now in bed and Alan and I are relaxing. Please pray that Alan does not suffer with chicken pox for long. I am safe from the chicken pox. I have already had it and when Isaac broke out I had the zooster immunoglobulin injection to protect me and the doctor says that I am still protected from this outbreak of Alans...so that is good.
Happy Birthday to Jacy Box! Happy Birthday for the 8th of November as well!
Ok, I am off to relax!
Love Charisse
***
Hello All,
I have not had much time to update. I had my gynae surveillance and so far so good. I should get some other results back in a couple of weeks.
Isaac is over the chicken poxs completely. Both Alan and I have felt really tired lately...my neutriphils dropped a bit and I have had some ulcers....could be any virus I have come in contact with that has done that...like chicken pox....but I have not caught anything and I may not necessarily catch anything....body could be just working to keep me well..and will go back up again.
Alan is not feeling too well though. He has felt like he has had the flu. But not the flu. He came home from work early today. It is unusual for Alan to feel this way. So I went out and bought him a "get well" present. Hopefully it won't be anything too much.
Isaac's birthday is tomorrow! He turns 4 years old! We have kindergym tomorrow. We will give him his presents in the morning, go to kindergym, and then come home and one of his friends from kindergym is coming over with his mum for lunch. And my sister may be coming too. Then on Saturday we have a group of kids from church coming over and Isaac will have a cake and stuff. It will be fun.
We don't have Thanksgiving here in Australia...so our BIG Christmas Pageant was on the 4th November. Isaac loved it! I have new pictures to put up.
My sister is 39 weeks pregnant now....and a few days...any day the baby should come...it is exciting!
Well, got to go!
Love Charisse
Tuesday, October 31, 2006
October 2006 entries
Sunday, October 22, 2006 0:39 AM CDT
Thursday 26th October
**UPDATE**
Well, Isaac has chicken pox. He is at the tail end of it now. He broke out in spots on Monday and his last new spot was last night. He has only had 5 spots. Isaac was immunised as a baby, however, they can still get it even if they are immunised. It just is a lot milder. So Isaac has not felt sick or had any fevers. He has complained a bit of being itchy. But he has been alright. Our main concern is Alan...he has never had chicken pox. We have a script to go and get him vaccinated. As for myself. I had chicken pox when I was 17 years old and it was not nice. Even though I have had it...and have some immunity to it...because FA and chicken pox do not mix and can cause bone marrow complications I have to go for a globulin injection in my buttock tomorrow morning..priority one. This will protect me for a few weeks against getting the virus and severity. So my haematologist has arranged for me to have it in the morning tomorrow some time. I don't like injections in the but. I used to have to have this injections all the time whenever I came in contact with people who had chicken pox...or an out break at school. I remember staring my haematologist down when I went into emergency to receive the injection. They had to give me two syringes.....in both buttocks at the same time and I would cry and scream. I am not looking forward to this injection...but I am sure I will handle it better than when I was a child.
So that is my latest news. I hope all of you are going well.
Love Charisse
***
Hello All,
I am very behind in my updating! Sorry about all that. It has actually been a tough month for me...more than you can imagine. There are so many things going on in the background here...in my life...that I would not know where to start.
Sleep insomnia has been a problem for me. This has actually been a chronic problem on and off for me for a couple of years, however, specifically this past year....since I initially got the first marrow results back that showed the slight increase in blast count at the beginning of the year. Even though I may not share heaps about all that is going on, this issue is always on my mind and sometimes I become so overwhelmed by the whole issue.
The research into whether a transplant is the way I want to go is a constant thing. I know, I know....I am not able to make this decision quickly at all. There is a LOT involved in my situation.
So where am I with that? First things first...I have to have a liver biopsy to check that my liver could even handle a transplant. The oxymethalone I used to be on has caused high liver enzymes. I am not on it anymore. In fact I have been off it for over 4 years now. However, my enzymes remain significantly high. It doesn't affect my general health and before Isaac was born I had a liver biopsy which didn't show there was any signficant damage...just decreased amount of bile ducts in the liver. However, this needs to be checked by the transplant team again to see if I could even go ahead with a transplant. Sometime soon this will happen. I know it may seem like things are taking a long time to deal with here....but let me reassure you that it is not because the doctors are delaying, but because we have needed to go at my pace. And I need to go slow at the moment...even when I feel things are urgent, I feel like I can only go at my pace. Otherwise, life starts to fall apart for me. I feel like I am going crazy. I will take as long as it needs me to feel right about anything.
Sleep is a problem. As I mentioned. I have been sleeping do badly that my judgement is impaired during the day. We are trying to get me into a sleep specialist right now.
What else is going on......my gynae surveillance is coming up in 2 weeks under anaesthetic....hysterscope and so on.
I know I have some more specialist appointments.
My sister is now 37 weeks pregnant and we can't wait for her to have the baby.
Isaac has been doing well. He started pre-entry preschool on Friday just gone. We had some tears and when he got home that day he told me that he had missed mummy and cried at the gate. Poor love. It is so hard to not cry as a mum when dropping them off for the first time. I gave him to the teacher who hugged him as I left. I had to get to my IVIG infusion. I have been a bit shaky this time around after the infusion but it went well.
Well, I am tired. Infusion tired....so it has been a big day at church and I am going to go and lie down. I am sure that there is so much more to update on....but some things slip my mind...let me think........
Oh yes, Isaac turns 4 years old in 2 weeks! Also we have the Christmas Pagaent coming up. Isaac can't wait. This is the first year that he has asked about Santa Clause.
Ah yes....I will leave it for now.
Love Charisse
Thursday 26th October
**UPDATE**
Well, Isaac has chicken pox. He is at the tail end of it now. He broke out in spots on Monday and his last new spot was last night. He has only had 5 spots. Isaac was immunised as a baby, however, they can still get it even if they are immunised. It just is a lot milder. So Isaac has not felt sick or had any fevers. He has complained a bit of being itchy. But he has been alright. Our main concern is Alan...he has never had chicken pox. We have a script to go and get him vaccinated. As for myself. I had chicken pox when I was 17 years old and it was not nice. Even though I have had it...and have some immunity to it...because FA and chicken pox do not mix and can cause bone marrow complications I have to go for a globulin injection in my buttock tomorrow morning..priority one. This will protect me for a few weeks against getting the virus and severity. So my haematologist has arranged for me to have it in the morning tomorrow some time. I don't like injections in the but. I used to have to have this injections all the time whenever I came in contact with people who had chicken pox...or an out break at school. I remember staring my haematologist down when I went into emergency to receive the injection. They had to give me two syringes.....in both buttocks at the same time and I would cry and scream. I am not looking forward to this injection...but I am sure I will handle it better than when I was a child.
So that is my latest news. I hope all of you are going well.
Love Charisse
***
Hello All,
I am very behind in my updating! Sorry about all that. It has actually been a tough month for me...more than you can imagine. There are so many things going on in the background here...in my life...that I would not know where to start.
Sleep insomnia has been a problem for me. This has actually been a chronic problem on and off for me for a couple of years, however, specifically this past year....since I initially got the first marrow results back that showed the slight increase in blast count at the beginning of the year. Even though I may not share heaps about all that is going on, this issue is always on my mind and sometimes I become so overwhelmed by the whole issue.
The research into whether a transplant is the way I want to go is a constant thing. I know, I know....I am not able to make this decision quickly at all. There is a LOT involved in my situation.
So where am I with that? First things first...I have to have a liver biopsy to check that my liver could even handle a transplant. The oxymethalone I used to be on has caused high liver enzymes. I am not on it anymore. In fact I have been off it for over 4 years now. However, my enzymes remain significantly high. It doesn't affect my general health and before Isaac was born I had a liver biopsy which didn't show there was any signficant damage...just decreased amount of bile ducts in the liver. However, this needs to be checked by the transplant team again to see if I could even go ahead with a transplant. Sometime soon this will happen. I know it may seem like things are taking a long time to deal with here....but let me reassure you that it is not because the doctors are delaying, but because we have needed to go at my pace. And I need to go slow at the moment...even when I feel things are urgent, I feel like I can only go at my pace. Otherwise, life starts to fall apart for me. I feel like I am going crazy. I will take as long as it needs me to feel right about anything.
Sleep is a problem. As I mentioned. I have been sleeping do badly that my judgement is impaired during the day. We are trying to get me into a sleep specialist right now.
What else is going on......my gynae surveillance is coming up in 2 weeks under anaesthetic....hysterscope and so on.
I know I have some more specialist appointments.
My sister is now 37 weeks pregnant and we can't wait for her to have the baby.
Isaac has been doing well. He started pre-entry preschool on Friday just gone. We had some tears and when he got home that day he told me that he had missed mummy and cried at the gate. Poor love. It is so hard to not cry as a mum when dropping them off for the first time. I gave him to the teacher who hugged him as I left. I had to get to my IVIG infusion. I have been a bit shaky this time around after the infusion but it went well.
Well, I am tired. Infusion tired....so it has been a big day at church and I am going to go and lie down. I am sure that there is so much more to update on....but some things slip my mind...let me think........
Oh yes, Isaac turns 4 years old in 2 weeks! Also we have the Christmas Pagaent coming up. Isaac can't wait. This is the first year that he has asked about Santa Clause.
Ah yes....I will leave it for now.
Love Charisse
Subscribe to:
Posts (Atom)