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

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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



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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