Friday, February 24, 2006 7:34 PM CST
What a week! I said I had HEAPS of appointments and I did. In fact I felt like I couldn't cope at certain times. I keep reminding you that the unspoken prayer request I have given, please keep on praying because it is not over yet. Thank you for your prayers...so much is going on right now.
Besides all that....I worked yesterday again. I worked in Orthopaedics and in radiation therapy...not my favourite but I still, I had a good day...unfortunately my anxeity caused me to have a very late night and today I don't feel well at all...hopefully tonight will be a better sleep and more rest.
Isaac had a paediatric appointment this week with his doctor - follow up from being premie. He did so well. He is growing well and as fit as a fiddle. They tell me he is really smart and I need not worry about his development in that area...which is always a concern when a baby is born so early....but Isaac did really well and I am pleased.
Well, please keep praying for me...I am under a lot of pressure right now so I need all the prayer I can get.
Have a good week.
Love Charisse
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Friday, February 17, 2006 6:22 AM CST
Hello Everyone,
First of all.....please keep praying for my unspoken request....I am having trouble talking about this request and apologise for seeming to be a bit distant.
Despite the challenge that is facing me right now...I had a GREAT day! My IVIG infusion reaction is over and i have felt much better.
I went to work today for the first time in a long while. The hospital was not calling in casual nurses because of an infection control reason..too hard to explain...but now they are calling us in again and I worked a 7 1/2 hour shift in Women's Health outpatients today. I worked with mothers and their babies. To anyone who doesn't know...I am a trained registered nurse and very proud to be one. I find being a nurse one of the most rewarding things out there in the world...and being someone who is always a patient you are able to grow and learn to be sensitive to the patients that I look after at work.
This week coming up will be a challenging one. I have an appointment almost every day! So please pray for me...I had no appointments this past week - Praise the Lord!
Well,unfortunately I woke with a sty in my left eye this morning and my eye is half closed and swollen and I can't see clearly out of it. I have a doctor's appointment to check it out tomorrow...but it is very painful.....otherwise..besides that unspoken thing...I am enjoying my son, Isaac and being with my husband, Alan...I have enjoyed attending prayer meetings this week with my church and have been greatly encouraged by the presence and power for the Lord Jesus Christ.
When I feel ready to share completely openly with everyone I will.
So until next time.
Have a great weekend.
Love Charisse
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Monday, February 13, 2006 5:49 PM CST
What a rough weekend I have had. The IVIG really knocked me around this weekend and I have felt unwell all week. I just got up at about 9.30am this morning and I am hoping and testing my body, thinking may be, that I feel a little better and my reaction is starting to calm down a bit.
Thank you everyone for honouring my request and praying for that unspoken prayer request. Please keep praying. I just need some time before I share about all of that.
But the weeks have been crazy and I am tired from all the commotion.
Yet, I have attended prayer meetings and enjoyed being in the presence of Jesus while singing, praying and just listening.....Jesus is amazing and no matter what you are going through..if you just sit and wait in His presence you can feel the strength and peace that He gives you amongst the craziness.
I still stand by Psalm 91 in the Bible. Jesus is with me in the good and in the bad. There are many promises in this verse that I will and am standing by. If you have the time, take out your Bible and read it. It is such an uplifting and comforting passage. I wrote out the whole thing in one of my past journals.
Anyway, I am going to go and start the day. Have a shower and work out what Isaac, my mum and I are going to do today.
Love you all,
Charisse
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Thursday, February 9, 2006 6:35 AM CST
Hello All,
please continue to keep me in your prayers. I have a very important test done tomorrow....and I need the Lord to do a work so please keep me in your prayers.
On top of that I have my IVIG infusion tomorrow. And I never look forward to that because I always get a reaction and it lasts for a week...and I feel just awful...so if you can also pray that this will go well...it would be much appreciated.
We actually have a lot of pressure going on here at the moment with some circumstances....and please ask that you would continue to pray for that unspoken prayer request.
Thank you and love you all,
Charisse
Tuesday, February 28, 2006
Tuesday, January 31, 2006
January 2006 entries
Monday, January 30, 2006 5:17 AM CST
Saturday 4th February ***UPDATE***
Well, I have had a challenging week to say the least. I still need prayer for that unspoken prayer request...please.
I couldn't believe it. I went to the doctor for a regular breast check and they told me there was a lump like thing in my left breast about 1 cm big. On top of everything this week I was so annoyed and upset. Although she said it didn't feel cancerous I still went for an ultrasound the next day because I was worried. I had not felt it myself. In fact, you all rememeber the thrush and mastitis I had for about 6 months last year? Well, it was in that place...exact place and it was sore after the examination. Anyway, to my relief it is just fibrous breast tissue and dense glandular tissue. Nothing abnormal...Praise the Lord...I don't need more stuff going on. I will probably go and see the breast specialist to ask a few questions...because it is sore and I want to know if it is related to scar tissue and stuff....this lady knows the breast like the back of her hand apparently. A family member put me on to her. However, my fears about this are relieved.
Anyway, life still goes on. God is Soveriegn over EVERYTHING...and I mean everything. The Devil likes to think He can rock the boat...and he does rock the boat...but my God is bigger and is with me. Praise the Lord. When I update again sometime I will share some Bible scripture that the Lord has been sharing with me. This is a Spiritual battle...the battle with FA..nmot just a physical battle. Thank you to all who pray for me and stand with me in this constant battle over my whole life.
Love Charisse
****
Monday 30th January
Well I started out today with a good day. In fact I had a good weekend...at an engagement party and church and then spending the day with Isaac...and we laughed so much and then something has to happen....and it feels like things are ruined......just when I am having so much fun....please just take this unspoken prayer request...please just keep me in your prayers.
Love Charisse
--------------------------------------------------------------------------------
Tuesday, January 24, 2006 5:30 AM CST
Hello All,
well today I had my bone marrow biopsy and I am glad that it is over. I really dislike them. I always have to train my anxiety over it.
You see, a couple of years ago they changed the sedation drugs that they use for biopsies at the main public hospital. And....they didn't work for me ...I was awake in the procedure and alerted the doctor and nurse but they just held me down while I was yelling and ignored the fact that I was telling them to stop because I was awake. That was horrible.
I have struggled with anxiety over the biopsy procedure even more since then and asked last year to be under a general, not just the sedation at my private hospital. My haematologist was so good. He planned everything and alerted the nurses and the anaesthetist to take special care with me due to my anxiety and told me I would be under and well alseep. It went really well and it was probably the best biopsy (if you can call biopsies good).
This year my haematologist could not do the biopsy and he organised another guy to do it...someone he trusted and someone who would understand anxiety. I had the anaesthetist from last time....they were nice...the nurses were not as well accomodating though and I felt a bit insecure today. The haematologist was nice enough, but still quite professional rather than the relational type...but he was nice..I could have it done with him again and not be too worried. The anaesthetist joked with me a bit...But Dr Ben was not there to organise everything like he does and that made me feel anxious. I told them all that I usually need more than the usual to go to sleep. Hehe...because I feel like I don't have control as a patient I fight for control...so I told the haematologist please not to do anything until I was alseep. - because I was very anxious about being touched and awake. He was true to his word. Anyway, I was chatting away and suddenly you are like....sleeping may be....and then I woke up and the room was fuzzy and I sat up and abruptly said, sounding shocked to my ears, "What are you doing?"....the nurses and doctors all looked at me...their faces were fuzzy and they looked surprise...anyway, someone said, "it is ok"...and I woke in recovery.....the moment I woke the vision came back to me and my anxiety played a bit on it...."oh no was I awake during the procedure? Was that a dream? I need to ask Alan if that really happened."
Turns out it was REAL and I did do what I thought I did. Alan, my husband attends all my biopsies..he comes in with me. This is the 8th one he has attended and it is my 21st biopsy I think. Anyway, he said that I was chatting a way and then I lay down and closed my eyes and the anaesthetist gave the "nod" to start.....in the biopsy they give me a local anaesthetic first in my hip, then the small cut, then the drilling type stuff......and Alan said that the doctor wiped me with betadine and then went to put in the local and with the first jab - that is when I sat up demanding what they were doing. Hehe....so I am glad to hear that immediately they gave me quite a large amount of drugs and I was fast asleep for the rest. So all in all, everything went well. It was definitely not as "Safe" feeling as last time...but it was good....yet I can't get that feeling of dread and the vision in my head to go away...I am working on that with my anxiety coping mechanisms...with cognitive behavioural therapy...have to tell my brain that I was ok, they acted on my fear and I was asleep and safe...it is ok......and it is ok...but because I was anxious about this at the beginning the feeling of what happened is still with me...however, it is ok and I will speak to Dr Ben and feel much better as well. Nothing terrible happened....I think it is just my association with being afraid that they were hurting me after that horrible experience a couple of years back.
Anyway, they did well to follow my prompts and put up with the "control freak" registered nurse who is a patient! HAHA.
I was disappointed that I had to cancel Isaac's paediatrician appointment today because of the biopsy. That is just a check up from being premie. Also when I got home from the biopsy and listened to the phone messages I had a message from the women's and children's hospital about Isaac's 3 year old premie "testing"...my brain still has anaesthetic and I can't remember what it is called. I hate that anyway and I felt anxiety and got all hot and funny. I don't like Isaac being proded by other people in this "testing"... and I struggle coping with it....his paediatrician is good. Last time I went I got cross with the neonatologist there. I prefer just his paediatrician. It probably has something to do with the fact that I dislike the women's and children's hospital as well.
Oh well, I need to go to bed. So that was my exciting day and Jesus did keep me safe and now I am waiting for my results. Oh joy!
Thank you so much to my mum and dad and to City International Community Church...thank you for praying and fasting for me all last week, putting on a prayer meeting for me on Monday.....thanks mum and dad for fervently praying for me...thank you to my sister, Liesl and her husband, Tim...thank you for devoting evenings for prayer on behalf of me and for my health and healing. Thank you for so much support and thank you for still praying while we wait for results. It has been such an honour to know that the Africans at church have been especially praying for me...and that they have taken time out of their day to fast....they are a wonderful bunch of prayer warriers.
Thank you Denise, my mum-in-law...thanks for praying and thinking about me and I am glad things went well for you today.
Now, I really am going to bed.
Bless you all and good night.
Love Charisse
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Monday, January 16, 2006 0:04 AM CST
Hello everyone,
First of all before I tell you all about my IVIG and other things I would like to announce that Isaac has now learnt to climb out of his cot. Today is the first day I have ever had to deal with it since he first did it on the weekend. He took 40 mins to settle in his cot this afternoon and he was so tired. But he thought it was such a funny game to climb out and run to me. He did it 6 times! And the last 2 times...I stood at the bedroom door and waited for him to open it, only to tell him and deposit him back in bed again. Then he was quiet for about 15 mins. I thought I would go and check that he was asleep and as I walked to the door I saw the door handle move slowly and the door open slightly...he then closed it again, turning the handle.....I thought he must have gone back into the cot because half hour later there was still no sign of him. Then Alan suggested that he may be asleep on the floor....I opened the door quietly and there he was alseep sitting up on the rocking chair and it looks like he had positioned the nappy box to try and climb in the cot again but got tired and fell asleep on the chair...I put him back in his cot and realised that he can't climb back in with the sides up. Funny little man...so this will be interesting. 2 hours later and he is still asleep! Anyway, back to business now!!
well I went and had my IVIG on Friday last week and I think I did really well. I was so nervous because I have had trouble with some of the nurses there...it is a private practice. They often got cross with me because I have bad veins and then would get upset with me that I felt faint or asked them to stop poking. They would find a vein and move the needle in and out of that vein for 5 mins and I would get sweaty and feel like I was going to pass out. And they also always went for the same vein telling me that it was big and the best one, but they have not yet ever actually gotten it. And I felt so put down and like I am a problem that I grew so nervous I felt really panicked and didn't want to go for my treatment. They would not listen to me when I told them of a technique that works to get my vein and the best place to get them. One nurse in particular was quite bossy. Well, they must learn to never play around with a patient who is also a Registered Nurse. I do not put up with this behaviour or treatment. SO I was so nervous that Alan rang the Practice Manager and complained to her giving her a stern lecture about the inappropriatness of their nurses and their attitudes and how life is difficult enough dealing with FA for me without them giving me trouble as well. He named the most difficult nurse and told them what type of treatment he would like to see and reminded them that I am also a registered nurse who is not silly at all and they should treat me with respect. Hehe...I really appreciated him doing that. As soon as I walked in for my IVIG...the nurses were smiling and talking nicely, giving me options. I told them where to get the vein...they obliged and got it first time!! Praise the Lord and the nurse who was named obviously got spoken to. She avoided me the whole time and I forced her to say hello by deliberately talking to her...but she was even more distant than she usually is...but it was a relief to not have her grumping around me. I did so much better. My anxiety levels were down, my IV in first time, the nurses were nice and approachable....and I decided that I would go home and face my reaction rather than stay in overnight. I went home and had less pain than usual. I slept heaps better, had less anxiety, less pain relief...on Sunday I slept until 1145am and that was my bad day. I struggled the feeling of burning up/ slight temperature and almost fainiting numerous times. I felt quite ill Sunday actually. I didn't make it to church. Oh well...I slept like a log and today I feel droopy from the IVIG but a bit better than yesterday. I am so proud of myself....first time home!!!! I will do it again.
I even attended a wedding on Saturday the day after infusion. My perception and balance was off but I managed to sit through the wedding ceremony. Thanks Darren for taking both Alan and I to the wedding and for the good time spent that night as a family.
Now, I have not got blood results back from Friday because I was too nervous to ask. I will recieve the liver ones back soon and hopefully there is not autoimmune diseases there. I have not had the liver ultrasound yet....will get to that may be this week or the next.
I just had my bone marrow biopsy date confirmed.......Ahhhhhhhhhhh.yep, I feel a bit panicked. In fact to tell the truth I actually feel like I am going to throw up...I am that nervous about it that whenever I think about it I feel like throwing up. As you all know I have had ongoing chromosome changes in my marrow over the last 11 years and it is always very scary to have a marrow check for this ongoing stuff. It will be on the 24th January at 11am. Please pray that there are no more changes or anything dangerous more than what it is! Please understand that this is a very scary procedure for me and I may not share about the results very easily. I feel protective of myself and find it hard to share things like blood results and bone marrow results. It is so private to me. SO if I don't share right away...it doesn't necessarily mean I have very bad news or anything...it simply means I am not ready to share with the entire world because I feel anxious when doing that....sharing the results out loud.....sort of feels like you can protect yourself more from FA if you don't say anything...I know, I know...that is no way true at all...but I have to process my results in my brain and sometimes that takes me a long time...it has always taken me a long time with each biopsy. I just wanted you to understand.
So please pray. I sometimes feel like there is no hope with FA...that it will just run its course. But there is always hope. I have survived to almost 28 years old. I have had chromosome changes...I have had emotional issues, kidney failure at one point (they are fine now)....and I am a born-again Christian. No matter what happens there is always hope. You know, it doesn't mean I am not scared...I am always feeling that human fear at times....but Jesus is Lord of my life.
I love Psalm 91 in the Bible. I always enter my name into it:
verse 1 to 6
"Charisse who dwells in the shelter of the Most High will rest in the shadow of the Almighty.
I will say of the Lord, 'He is my refuge and my fortress, my God in Whom I trust'.
Surely He will save Charisse from the fowler's snare, and from the deadly pestilence (disease).
He will cover you with His feathers, and under His wings Charisse will find refuge;
His faithfulness will be Charisse's shield and rampart.
Charisse will not fear the terror of the night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday".
........( and I like this bit, verse 9 continued)....."If Charisse makes the Most High her dwelling - even the Lord, who is my refuge - then no harm will befall you, no disaster will come near your tent. For He will command His angels concerning you to guard you in all your ways;
they will lift you up on their hands so that you will not strike your foot upon a stone. You will tread upon the lion and the cobra, you will trample the great lion and the serpent. (verse 14) 'Because Charisse loves me,'says the Lord, 'I will rescue her; I will protect her, for she acknowledges my name. She will call upon me, and I will answer her; I will be with her in trouble, I will deliver her and honor her. With long life will I satisfy her and show her My salvation'".
Amen. Sorry that was long. But I love the promises in this Bible Psalm. The Biblical promise that Jesus will be with me all the time...in good and in bad...and that He will answer me. Jesus is faithful to His people and because of that...there is always hope!
God bless you all and I will update again soon.
Love Charisse
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Wednesday, January 11, 2006 1:40 AM CST
Afternoon to all,
what has been happening around here. Alan is finally back at work and it has been weird. This is his second week back and I am getting into a routine again.
I have had an ENT appointment since I last wrote to have a nasendoscopy...just usual cancer surveillance stuff and all was clear and fine. For some people having this done awake would be normal...for me ...my anxiety usually is too high but I was determined to not freak out and have it done awake to avoid anaesthetic. Nasendoscopy is where they place a scope down through your nose and look at the vocal cords and throat and nose and other places.....I did it awake and I only shook for a short while. I usually can't handle a doctor that close to me without panicking.
Excitement! No not really. I have another infusion on Friday. I usually stay over night because of the reaction that I have...but I have been feeling so stressed at the hospital that I think it might be time to try coming home and using other drugs at home to help with the reaction....so the doctor doesn't know this yet...but I want to come home and not stay in that night. I think it will calm my nerves....well I hope...got to try.
Tomorrow, I have a liver specialist appointment. I have high liver enzymes caused by the oxymethalone I used to be on for many, many years. My liver was fine on biopsy 3 years ago and my counts have not changed...this is just a check up.
Isaac has tested me this afternoon. He woke up grumpy from his sleep at 4.30pm and continued to cry and complain for 45 mins. I sure feel tired after all that complaining. Otherwise he is well.
It has been very hot here. Equal to the 100's and mid 100's F ...very hot.....oh and we have grass down in the back yard after 6 years. YES! I will have to put a picture on here to show the yard before and after...such a transformation.
Well, that is it from my end of the woods. I will update again soon.
Love Charisse
12th January Thursday
*** Quick Update***
Ok, so I had my liver appointment today. As per usual I always feel weird after a doctor's appointment. It went ok. I am to have a liver ultrasound to check on the ducts in my liver. Three years ago when I had my biopsy I had less ducts probably due to oxymethalone and no other signs of problems. We will check on them with an ultrasound. And because my enzymes are still so high after 3 years of no oxyemthalone he wanted to do bloods for liver autoimmune diseases. Personally, I don't think that is the issue...I think it is just a long term effect of the oxymethalone. It doesn't affect how I feel at all...I have had high enzymes for almost 8 years now. And he thinks he checked these bloods 3 years ago (results at another hospital...not private hospital)...so he wants to check them again just in case. As per usual I am not impressed with more "things" to do...but so be it.
That is all.
Have a great weekend
Love Charisse
Saturday 4th February ***UPDATE***
Well, I have had a challenging week to say the least. I still need prayer for that unspoken prayer request...please.
I couldn't believe it. I went to the doctor for a regular breast check and they told me there was a lump like thing in my left breast about 1 cm big. On top of everything this week I was so annoyed and upset. Although she said it didn't feel cancerous I still went for an ultrasound the next day because I was worried. I had not felt it myself. In fact, you all rememeber the thrush and mastitis I had for about 6 months last year? Well, it was in that place...exact place and it was sore after the examination. Anyway, to my relief it is just fibrous breast tissue and dense glandular tissue. Nothing abnormal...Praise the Lord...I don't need more stuff going on. I will probably go and see the breast specialist to ask a few questions...because it is sore and I want to know if it is related to scar tissue and stuff....this lady knows the breast like the back of her hand apparently. A family member put me on to her. However, my fears about this are relieved.
Anyway, life still goes on. God is Soveriegn over EVERYTHING...and I mean everything. The Devil likes to think He can rock the boat...and he does rock the boat...but my God is bigger and is with me. Praise the Lord. When I update again sometime I will share some Bible scripture that the Lord has been sharing with me. This is a Spiritual battle...the battle with FA..nmot just a physical battle. Thank you to all who pray for me and stand with me in this constant battle over my whole life.
Love Charisse
****
Monday 30th January
Well I started out today with a good day. In fact I had a good weekend...at an engagement party and church and then spending the day with Isaac...and we laughed so much and then something has to happen....and it feels like things are ruined......just when I am having so much fun....please just take this unspoken prayer request...please just keep me in your prayers.
Love Charisse
--------------------------------------------------------------------------------
Tuesday, January 24, 2006 5:30 AM CST
Hello All,
well today I had my bone marrow biopsy and I am glad that it is over. I really dislike them. I always have to train my anxiety over it.
You see, a couple of years ago they changed the sedation drugs that they use for biopsies at the main public hospital. And....they didn't work for me ...I was awake in the procedure and alerted the doctor and nurse but they just held me down while I was yelling and ignored the fact that I was telling them to stop because I was awake. That was horrible.
I have struggled with anxiety over the biopsy procedure even more since then and asked last year to be under a general, not just the sedation at my private hospital. My haematologist was so good. He planned everything and alerted the nurses and the anaesthetist to take special care with me due to my anxiety and told me I would be under and well alseep. It went really well and it was probably the best biopsy (if you can call biopsies good).
This year my haematologist could not do the biopsy and he organised another guy to do it...someone he trusted and someone who would understand anxiety. I had the anaesthetist from last time....they were nice...the nurses were not as well accomodating though and I felt a bit insecure today. The haematologist was nice enough, but still quite professional rather than the relational type...but he was nice..I could have it done with him again and not be too worried. The anaesthetist joked with me a bit...But Dr Ben was not there to organise everything like he does and that made me feel anxious. I told them all that I usually need more than the usual to go to sleep. Hehe...because I feel like I don't have control as a patient I fight for control...so I told the haematologist please not to do anything until I was alseep. - because I was very anxious about being touched and awake. He was true to his word. Anyway, I was chatting away and suddenly you are like....sleeping may be....and then I woke up and the room was fuzzy and I sat up and abruptly said, sounding shocked to my ears, "What are you doing?"....the nurses and doctors all looked at me...their faces were fuzzy and they looked surprise...anyway, someone said, "it is ok"...and I woke in recovery.....the moment I woke the vision came back to me and my anxiety played a bit on it...."oh no was I awake during the procedure? Was that a dream? I need to ask Alan if that really happened."
Turns out it was REAL and I did do what I thought I did. Alan, my husband attends all my biopsies..he comes in with me. This is the 8th one he has attended and it is my 21st biopsy I think. Anyway, he said that I was chatting a way and then I lay down and closed my eyes and the anaesthetist gave the "nod" to start.....in the biopsy they give me a local anaesthetic first in my hip, then the small cut, then the drilling type stuff......and Alan said that the doctor wiped me with betadine and then went to put in the local and with the first jab - that is when I sat up demanding what they were doing. Hehe....so I am glad to hear that immediately they gave me quite a large amount of drugs and I was fast asleep for the rest. So all in all, everything went well. It was definitely not as "Safe" feeling as last time...but it was good....yet I can't get that feeling of dread and the vision in my head to go away...I am working on that with my anxiety coping mechanisms...with cognitive behavioural therapy...have to tell my brain that I was ok, they acted on my fear and I was asleep and safe...it is ok......and it is ok...but because I was anxious about this at the beginning the feeling of what happened is still with me...however, it is ok and I will speak to Dr Ben and feel much better as well. Nothing terrible happened....I think it is just my association with being afraid that they were hurting me after that horrible experience a couple of years back.
Anyway, they did well to follow my prompts and put up with the "control freak" registered nurse who is a patient! HAHA.
I was disappointed that I had to cancel Isaac's paediatrician appointment today because of the biopsy. That is just a check up from being premie. Also when I got home from the biopsy and listened to the phone messages I had a message from the women's and children's hospital about Isaac's 3 year old premie "testing"...my brain still has anaesthetic and I can't remember what it is called. I hate that anyway and I felt anxiety and got all hot and funny. I don't like Isaac being proded by other people in this "testing"... and I struggle coping with it....his paediatrician is good. Last time I went I got cross with the neonatologist there. I prefer just his paediatrician. It probably has something to do with the fact that I dislike the women's and children's hospital as well.
Oh well, I need to go to bed. So that was my exciting day and Jesus did keep me safe and now I am waiting for my results. Oh joy!
Thank you so much to my mum and dad and to City International Community Church...thank you for praying and fasting for me all last week, putting on a prayer meeting for me on Monday.....thanks mum and dad for fervently praying for me...thank you to my sister, Liesl and her husband, Tim...thank you for devoting evenings for prayer on behalf of me and for my health and healing. Thank you for so much support and thank you for still praying while we wait for results. It has been such an honour to know that the Africans at church have been especially praying for me...and that they have taken time out of their day to fast....they are a wonderful bunch of prayer warriers.
Thank you Denise, my mum-in-law...thanks for praying and thinking about me and I am glad things went well for you today.
Now, I really am going to bed.
Bless you all and good night.
Love Charisse
--------------------------------------------------------------------------------
Monday, January 16, 2006 0:04 AM CST
Hello everyone,
First of all before I tell you all about my IVIG and other things I would like to announce that Isaac has now learnt to climb out of his cot. Today is the first day I have ever had to deal with it since he first did it on the weekend. He took 40 mins to settle in his cot this afternoon and he was so tired. But he thought it was such a funny game to climb out and run to me. He did it 6 times! And the last 2 times...I stood at the bedroom door and waited for him to open it, only to tell him and deposit him back in bed again. Then he was quiet for about 15 mins. I thought I would go and check that he was asleep and as I walked to the door I saw the door handle move slowly and the door open slightly...he then closed it again, turning the handle.....I thought he must have gone back into the cot because half hour later there was still no sign of him. Then Alan suggested that he may be asleep on the floor....I opened the door quietly and there he was alseep sitting up on the rocking chair and it looks like he had positioned the nappy box to try and climb in the cot again but got tired and fell asleep on the chair...I put him back in his cot and realised that he can't climb back in with the sides up. Funny little man...so this will be interesting. 2 hours later and he is still asleep! Anyway, back to business now!!
well I went and had my IVIG on Friday last week and I think I did really well. I was so nervous because I have had trouble with some of the nurses there...it is a private practice. They often got cross with me because I have bad veins and then would get upset with me that I felt faint or asked them to stop poking. They would find a vein and move the needle in and out of that vein for 5 mins and I would get sweaty and feel like I was going to pass out. And they also always went for the same vein telling me that it was big and the best one, but they have not yet ever actually gotten it. And I felt so put down and like I am a problem that I grew so nervous I felt really panicked and didn't want to go for my treatment. They would not listen to me when I told them of a technique that works to get my vein and the best place to get them. One nurse in particular was quite bossy. Well, they must learn to never play around with a patient who is also a Registered Nurse. I do not put up with this behaviour or treatment. SO I was so nervous that Alan rang the Practice Manager and complained to her giving her a stern lecture about the inappropriatness of their nurses and their attitudes and how life is difficult enough dealing with FA for me without them giving me trouble as well. He named the most difficult nurse and told them what type of treatment he would like to see and reminded them that I am also a registered nurse who is not silly at all and they should treat me with respect. Hehe...I really appreciated him doing that. As soon as I walked in for my IVIG...the nurses were smiling and talking nicely, giving me options. I told them where to get the vein...they obliged and got it first time!! Praise the Lord and the nurse who was named obviously got spoken to. She avoided me the whole time and I forced her to say hello by deliberately talking to her...but she was even more distant than she usually is...but it was a relief to not have her grumping around me. I did so much better. My anxiety levels were down, my IV in first time, the nurses were nice and approachable....and I decided that I would go home and face my reaction rather than stay in overnight. I went home and had less pain than usual. I slept heaps better, had less anxiety, less pain relief...on Sunday I slept until 1145am and that was my bad day. I struggled the feeling of burning up/ slight temperature and almost fainiting numerous times. I felt quite ill Sunday actually. I didn't make it to church. Oh well...I slept like a log and today I feel droopy from the IVIG but a bit better than yesterday. I am so proud of myself....first time home!!!! I will do it again.
I even attended a wedding on Saturday the day after infusion. My perception and balance was off but I managed to sit through the wedding ceremony. Thanks Darren for taking both Alan and I to the wedding and for the good time spent that night as a family.
Now, I have not got blood results back from Friday because I was too nervous to ask. I will recieve the liver ones back soon and hopefully there is not autoimmune diseases there. I have not had the liver ultrasound yet....will get to that may be this week or the next.
I just had my bone marrow biopsy date confirmed.......Ahhhhhhhhhhh.yep, I feel a bit panicked. In fact to tell the truth I actually feel like I am going to throw up...I am that nervous about it that whenever I think about it I feel like throwing up. As you all know I have had ongoing chromosome changes in my marrow over the last 11 years and it is always very scary to have a marrow check for this ongoing stuff. It will be on the 24th January at 11am. Please pray that there are no more changes or anything dangerous more than what it is! Please understand that this is a very scary procedure for me and I may not share about the results very easily. I feel protective of myself and find it hard to share things like blood results and bone marrow results. It is so private to me. SO if I don't share right away...it doesn't necessarily mean I have very bad news or anything...it simply means I am not ready to share with the entire world because I feel anxious when doing that....sharing the results out loud.....sort of feels like you can protect yourself more from FA if you don't say anything...I know, I know...that is no way true at all...but I have to process my results in my brain and sometimes that takes me a long time...it has always taken me a long time with each biopsy. I just wanted you to understand.
So please pray. I sometimes feel like there is no hope with FA...that it will just run its course. But there is always hope. I have survived to almost 28 years old. I have had chromosome changes...I have had emotional issues, kidney failure at one point (they are fine now)....and I am a born-again Christian. No matter what happens there is always hope. You know, it doesn't mean I am not scared...I am always feeling that human fear at times....but Jesus is Lord of my life.
I love Psalm 91 in the Bible. I always enter my name into it:
verse 1 to 6
"Charisse who dwells in the shelter of the Most High will rest in the shadow of the Almighty.
I will say of the Lord, 'He is my refuge and my fortress, my God in Whom I trust'.
Surely He will save Charisse from the fowler's snare, and from the deadly pestilence (disease).
He will cover you with His feathers, and under His wings Charisse will find refuge;
His faithfulness will be Charisse's shield and rampart.
Charisse will not fear the terror of the night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday".
........( and I like this bit, verse 9 continued)....."If Charisse makes the Most High her dwelling - even the Lord, who is my refuge - then no harm will befall you, no disaster will come near your tent. For He will command His angels concerning you to guard you in all your ways;
they will lift you up on their hands so that you will not strike your foot upon a stone. You will tread upon the lion and the cobra, you will trample the great lion and the serpent. (verse 14) 'Because Charisse loves me,'says the Lord, 'I will rescue her; I will protect her, for she acknowledges my name. She will call upon me, and I will answer her; I will be with her in trouble, I will deliver her and honor her. With long life will I satisfy her and show her My salvation'".
Amen. Sorry that was long. But I love the promises in this Bible Psalm. The Biblical promise that Jesus will be with me all the time...in good and in bad...and that He will answer me. Jesus is faithful to His people and because of that...there is always hope!
God bless you all and I will update again soon.
Love Charisse
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Wednesday, January 11, 2006 1:40 AM CST
Afternoon to all,
what has been happening around here. Alan is finally back at work and it has been weird. This is his second week back and I am getting into a routine again.
I have had an ENT appointment since I last wrote to have a nasendoscopy...just usual cancer surveillance stuff and all was clear and fine. For some people having this done awake would be normal...for me ...my anxiety usually is too high but I was determined to not freak out and have it done awake to avoid anaesthetic. Nasendoscopy is where they place a scope down through your nose and look at the vocal cords and throat and nose and other places.....I did it awake and I only shook for a short while. I usually can't handle a doctor that close to me without panicking.
Excitement! No not really. I have another infusion on Friday. I usually stay over night because of the reaction that I have...but I have been feeling so stressed at the hospital that I think it might be time to try coming home and using other drugs at home to help with the reaction....so the doctor doesn't know this yet...but I want to come home and not stay in that night. I think it will calm my nerves....well I hope...got to try.
Tomorrow, I have a liver specialist appointment. I have high liver enzymes caused by the oxymethalone I used to be on for many, many years. My liver was fine on biopsy 3 years ago and my counts have not changed...this is just a check up.
Isaac has tested me this afternoon. He woke up grumpy from his sleep at 4.30pm and continued to cry and complain for 45 mins. I sure feel tired after all that complaining. Otherwise he is well.
It has been very hot here. Equal to the 100's and mid 100's F ...very hot.....oh and we have grass down in the back yard after 6 years. YES! I will have to put a picture on here to show the yard before and after...such a transformation.
Well, that is it from my end of the woods. I will update again soon.
Love Charisse
12th January Thursday
*** Quick Update***
Ok, so I had my liver appointment today. As per usual I always feel weird after a doctor's appointment. It went ok. I am to have a liver ultrasound to check on the ducts in my liver. Three years ago when I had my biopsy I had less ducts probably due to oxymethalone and no other signs of problems. We will check on them with an ultrasound. And because my enzymes are still so high after 3 years of no oxyemthalone he wanted to do bloods for liver autoimmune diseases. Personally, I don't think that is the issue...I think it is just a long term effect of the oxymethalone. It doesn't affect how I feel at all...I have had high enzymes for almost 8 years now. And he thinks he checked these bloods 3 years ago (results at another hospital...not private hospital)...so he wants to check them again just in case. As per usual I am not impressed with more "things" to do...but so be it.
That is all.
Have a great weekend
Love Charisse
Saturday, December 31, 2005
December 2005 entries
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
**************
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
***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
**************
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
--------------------------------------------------------------------------------
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
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