Tuesday, July 26, 2005 1:44 AM CDT
Good afternooon everyone,
well, sorry it has taken me so long to update on how I went with the new doctor and my IVIG infusion on the weekend.
I had a tough weekend to be honest. First of all, it took them 3 jabs to get IV access and I honestly didn't think they were going to get the third one in but they did - Praise God!!! It felt weird not having my private paediatric haematologist there...Dr. Ben. Please refer to the journal history in relation to that if you don't know what that is all about.
To be honest I felt vulnerable and upset on Friday. I sat in the chair and I had tears in my eyes as they jabbed me for the IV access. All you children out there who have constant pricks...well done. You do so well because I am an adult and I still cry. As a child, I was also very vulnerable. I was so nervous and relaxed a bit after the IV access was put in. Then the new doctor came over and I felt myself tense up. I had worked so hard to keep calm that day. I kept telling myself that I was safe and ok.
So I went in to see him. I thought it would be a quick hello because he is not supposed to be "looking" after me officially because Dr. Ben still is at the women's and children's hospital. However, he had a lot of questions. My anxiety started to rise but I managed to talk. I fiddled with my hands and felt my mind go blank every now and then. He then started raving on about my blood results and my bone marrow results in really technical terms that I thought Dr. Ben had missed something really serious in the results I had been given. I panicked and spoke loudly at him to STOP!!! I had not heard all my results and Dr. Ben was coming to the hospital to tell me that night. I already struggle with hearing any results, let alone from a new doctor who has not seen an FA patient in 20 years! I disliked my appointment. He was nice but too technical. When I told him that I had pain in my L breast he got all technical telling me that I might land in hospital if I don't hurry up and treat it and so on. Hmm....it made me panic....but I thought, "I will ask Dr. Ben tonight".
Then this guy even forgot that I was in overnight for IVIG reactions and tried to get me to go home. I had Dr. Ben visit. Please keep me in mind for some stuff that I am working through with my health. It is confronting and yet, I know what Jesus has said He will do. I am standing on His word. I don't feel like sharing more than that. Please remember me in your prayers. There are things that I have beaten with FA that doctors are amazed at. I am constantly taking authority over this disease in the Name of Jesus.
Anway, I had my reaction. I was so anxious that night and I had so much pain all over my body. I get a bit cross when I am in pain and anxious. So I refused IV sedation and fell asleep at 2am in the morning. Alan, my husband stayed with me and he said I woke every hour all night. I had so much pain meds and stuff and I still felt awful. Then the next morning, the nurse waltzed on in saying that I needed to get up anyway. I had had hardly any sleep. I was in hospital for crying out loud....I can sleep in. Well, I couldn't move properly and I heard her argueing with Alan about my steroids that I take....she was a real pain. I am an RN so I don't think I was being unjust. Anyway, she finally did my blood pressure and it was only 82/52...it was low...no wonder I felt so awful and couldn't get out of bed. It went up to 99/60 towards lunch and then she didn't check it again. But I reckon it went up a bit further because after lunch I could finally, dizzily have a shower and lie on the bed.
So, I felt tense about stuff. I didn't like the new doctor. At least he didn't attempt to touch me or anything. I had a hard time once I got home. I had some real emotional issues and the IVIG reaction was still bothering me. I missed church and suffered a bad headache and couldn't see and it just was not nice.
I had BMT issues in my face - I was grieving a lot about my brother.....I ended up getting so cross about somethings that happened way back then...in 1994...I also struggled with feeling the fear and emotion around having FA myself. There are times I feel really scared about FA.
But, I just want to say this. I might have FA. Yes, it threatens my life in lots of ways. You know, even just the medical information about FA threatens me. I am praying for all FA patients out there and for myself. I have set myself on a journey that this disease will not have its own way...I have beaten many odds about FA already. I will continue to beat them with Jesus right by my side. There is always hope with Jesus.
Oh yeah, so despite my little speech....the other thing that I was worried about was my L breast. I have struggled with mastitis and thrush in this breast since Isaac bit me about 6 months ago. It has been good for about 2 months I think and then last Wednesday it flared up again and there was so much pain. I started to worry. I started to worry that I actually had cancer with the risks and all with FA. So Dr. Ben said to get a breast ultrasound. I did that yesterday and everything is fine. No cancer just the thrush again. So I am back on medication for that. Praise God. Let's pray that the thrush vanishes forever now!!
Oh yes, and today I saw Dr. Smiley with Isaac. As some of you know he was 13 weeks early so he has regular paediatric check ups with Dr. Smiley. He was given a good report. He could be talking a bit better but he is fine. On top of that I had a good talking session with Dr. Smiley about some of my emotional issues (he often meets with me to discuss). We talked about America. Since in 2 1/2 weeks Alan, Isaac and I leave for Camp Sunshine in Cascoe Maine. I also gave him an updated book on FA. He was like an excited child. Hehe....he was so excited about the book and how he was going to have some good, night reading...funny to see them so excited over a medical book.
Anyway, I am such a talker!! I really need to go. Know that I am thinking about the adults and children beating diseases and disorders.
Bless you all and have a good day.
Love Charisse
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Tuesday, July 19, 2005 8:30 PM CDT
***UPDATE*** Saturday 23rd July
Hi Everyone.
I have just gotten home tonight after spending Friday and most of today in hospital having my IVIG infusion and then recovering. Since I get a reaction to the infusions and suffer form severe pain over my whole body and then my anxiety increases. I will update about how my visit went tomorrow or the next day. I had a few challenges and I must say that I didn't have the nicest time in hospital. I met the new doctor involved and I can only say that he was ok. But I will go into more detail about how I handled my anxiety and all. I am tired and will update soon. I also received finally, the cytogenetic results of my bone marrow. But,as I said, I will update on that later.
Love Charisse
Hello All,
thought I would update you all on how I went with seeing Dr. Ben on Monday at the women's and children's hospital.
Once again, in case you forgot, this was my first time attending the children's section for a medical appointment. I went on a "tour" to help desensitise myself to the environment a couple of weeks ago. There are so many memories there, including the tragic death of my brother, Shannon.
It was a challenging day. I accomplished a lot, however, it took a huge toll on my body and mind and I have felt quite tired from the whole ordeal. So I will explain what happened.
First of all, I drove in by myself. Before I left home, I felt quite nervous so I put some worship songs on in my car and sang to them at the top of my lungs all the way to the hospital. It takes about 40 mins to get there.
Once I was there, it was fine walking to the hospital, but once I got into the main entrance I had to start dealing with anxiety issues. HA.....you have to laugh sometimes. I walked back and forth, back and forth around the main entrance. I couldn't seem to get myself to walk "IN" properly. I had a small giggle to myself thinking that I must look so silly, this lady just walking up and down at the main entrance. Then I felt disorientated!! This is very typical of the anxiety I get. Sometimes disorientation leads to dissociation and I don't feel like I am actually there, everything is in slow motion, I don't feel real. It is a strange feeling. Anyway, I had disorientation. I knew where outpatients was but I couldn't remember how to get there. Now this hospital is imprinted on my mind. I know it inside out and upside down pretty much. I looked at the time, it was 3.30pm. I was supposed to be at the appointment. Hehe....I saw a cleaner and asked where outpatients was and she said just down the hallway. HA....how easy is that.
Well, on my way I found myself walking very slow. Memories of being a child and a patient were fresh in my mind. I felt scared but convinced myself that I was ok and I am an adult now and no one can do anything to me without my authority. That was a big thing when I was a child. I didn't like it when doctors did "what they want" when I felt vulnerable and exposed. So I was scared it would happen again, but this time I am an adult.
I got to outpatients and quietly said who I was and sat down. It was so overwhelming and I put my hands to my face and just cried. I couldn't believe that I was back in this hospital again, as a patient, where Shannon died and where I remember so much invasion as a child. The nurses were wonderful. They didn't overwhelm me. She led me to a quiet room where I could cry without interruption.
I then gathered myself together and Dr. Ben walked in. I had stopped crying. Unfortunately, Dr Ben is the Fanconi Anaemia doctor to me. He is extremely nice and polite and kind. He is not threatening in anyway. But I struggle to talk to him when I am in confronting situations. Like, I can't face him to hear bone marrow results. It is too confronting. This time it was confronting because the environment felt confronting. He talked with me and was soooo pleased and expressed so much excitement that I had driven myself. Proclaiming that it was such an achievement that I had even made it here. He said not to be too hard on myself with having difficulty talking because getting here was a huge accomplishment, and the fact that I was even in the appointment was more than he expected me to do. I felt good about that. I did manage to talk eventually, in broken sentences. It was very overwhelming but I think I did well. I had to concentrate soooo hard not to hyperventilate so I would shut my eyes for long periods to get control of that. I would fiddle with my hands and my chest felt sore and tight. But I managed to sit there and have a broked conversation. That is an achievement. I am sure that when Dr. Ben said that he had to leave his private practice and do more hours at the childrens.....it was Jesus trying to get me to confront my grief and fears at this hospital and it is sure not easy.
I had some questions about the genetics of FA and he answered them for me. It was so involved and finally, at one point when I asked a very confronting question, he answered it, my body said, "that is enough". I started getting dissociation. I could hear him talking to me, but he sounded far away, I felt heat rise in my cheeks and I suddenly felt like I was not there. When I opened my eyes, things were blurry and I knew, "oh no....I am going to topple over". When I have high anxiety.....I suffer from conversion reactions where the anxiety and stuff is so high that it disrupts your physiology and you collapse. Except this time I was going to take control of the situation and said to him that I was feeling unwell and needed to lie down. Unfortunately, on the way to the bed, that was it, I went, I collapsed......so anyway, despite that.....even with that....I did so well...instead of just collapsing I was able to try and take control of the situation. My pyschologist says that is the key to making you feel proud of yourself. When you can detect something before it happens and try and do something about it.
So he called Alan, my husband and I talked to a nurse after I woke up for a long while. Then, shakily I met Alan in the cafeteria and we debriefed.
Alan had been in an appointment with another doctor who is helping out with my IVIG infusions. Since Dr. Ben is not employed at the private hospital anymore and he can't admit there at the moment, only at the childrens....I am definitely not having the infusion at the childrens....so this other doctor is helping out by just admitting me but not actually taking over my care. Some of you would know that I find that also very confronting. I don't know what any of you have found with FA...but when you get a new doctor....they want to prode and poke because they want to know about FA and stuff. Well, I find that very invasive and if I know I am going to a new doctor, my barriers come up and they can't get close to me at all. I have had trouble with adult haematologists not knowing anything about FA. But, Alan met with this guy and it turns out he has had experience at the FA clinic in the UK a long time ago....so at least he is familiar with it. That doesn't mean I want him to do anything to me. He has promised that he will allow Dr. Ben to deal with all that and he is just there to help out with the admission for my infusions. So that is good.
I meet the new doctor on Friday when I go in gor my IVIG infusion. That is another confronting situation that I will work through. But, Dr. Ben is coming to visit me in hospital unofficially that night. I stay in hospital for the weekend due to pain reaction to the infusion that is not nice at all. Praise God that I am actually very well with the FA. I have not been sick for ages!!! Praise be to God!
Anway, now that I have talked my head off, I would like to say that I am actually having a really lovely day. The sun is shinning. When Isaac gets up I reckon we will go out.
I am still praying and thinking about Nicholas Boggs, Emma Clifton, Maria Godwin and any other children or adults having problems with their health.
Lots of love,
Charisse
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Friday, July 15, 2005 0:56 AM CDT
Just a quick note to everyone. Thank you to all who have been signing the guestbook. It really puts a smile on my face when I see that you have been to visit me. So please sign the guestbook so I know you have been.....I find it very exciting! HA....and I am 27 years old.
I have been doing ok. I have been having trouble with continued anxiety, however, I know that while I am grieving for my brother and dealing with certain issues surrounding it, it is pretty normal to be upset.
I just wish I didn't feel so tired all the time. This week I really struggled with tiredness and that made it hard to look after my son Isaac who is 2 1/2 years old. Anyway, I ended up having a couple of doctor's appointments. One with my GP....and we are just testing my thyroid and B12 levels to check if that has anything to do with my tiredness (besides the anxiety and depression I have dealt with).
I am still so proud of myself for going on the "tour" of the women's and children's hospital. The psychologist and my doctors tell me that what I did was extremely confronting and that I showed a lot of strength doing what I did. I definitely could not have done without Jesus by my side. Praise the Lord. Please refer to journal history for my walk with Fanconi Anaemia, anxiety, grief and depression.....my battle and achievements, my love for Jesus.
I had an appointment with my son's paediatrician yesterday except it was for me not for Isaac. He does a lot of counselling with me and I was talking with him for just over an hour. It was a really good chat. We approached the issues of Shannon's death, BMT's and some of the difficult experiences that I have had as a child with FA. Some emotional things and stuff I don't want to go in to for now. I was a bit anxious over the whole appointment. Getting symptoms like a painful chest, difficult to breathe in and heart racing. Those symptoms can be very difficult and I wanted to walk away from the appointment but knew I needed to be there. I got through it though!! A great accomplishment for me not to turn away and drive home again when I find something too confronting. I controlled my anxiety very well I think.
Anwyay, on Monday I actually have my first appointment with Dr. Ben, my paediatric Haematologist at the women's and children's hospital. We are taking it slow....instead of having the first appointment in Ronald McDonald House where it is supposed to be, we are having it in general children's outpatients. Yes, I feel quite nervous about the whole thing. It becomes more medical when you are acutally seeing a doctor there and not just a tour. I just need to remember that I am going there as an adult now not as a child. I actually have authority. I can say "NO" if I want. When I was a child it felt like everyone would do whatever they want with you and not consider your own feelings.....as a result I had some invasive things happen which are marked into my memory and I get scared when going for an appointment. I have been rehearsing how my appointment will go.....so I think I will get through.
Well, that is enough for now. I am going to go and read my Bible and spend some time with Jesus.
I would like to just thank my husband, Alan. He is wonderful with me and helps me work through every bit of anxiety that I have. He has seen me in a bad way and has contiued to support me and love me. He continues to help with Isaac. He is a wonderful, Godly man who loves Jesus. He is also a wonderful Godly husband and Father. Bless you Alan and I love you very much. Thank you for your constant patience and love.
Blessings to you all. Praying for you Nicholas Boggs and Emma Clifton, Maria Godwin and all my other FA friends.
Love Charisse
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Friday, July 8, 2005 3:21 AM CDT
Evening everyone,
well, it has been a well worth day today.
Today I met with my social worker from the women's and children's hospital to have a "tour" to help desensitise me to the hospital (my brother died there after a bone marrow transplant.....had FA).
She took me into the places and wards of the hospital which felt threatening to me. I relived a lot of my brother's death and childhood memories since I was treated there as well for FA.
We went to 2 most important places...the Ronald McDonald House and ICU which is where my brother passed away suddenly. We also went to the haematology ward and paediatric outpatients. I had anxiety and even had moments where I cried and felt strange....but it was a positive thing to do. I did it...I faced things for the first time and I did ok.....yeah sure, I had anxiety and felt a bit dizzy at times and stressed and even cried, but I learnt a lot today. I learnt a lot about my suppressed fealings. I faced a lot and I did well. I actually feel good about myself and about the mission I have accomplished.
It doesn't mean that I could just go back there and feel comfortable...but I have taken the first step to dealing with the intense greif I have had over Shannon and things that happened there.
This is where I will be seeing my doctor for a while. I didn't choose that, but it is making me face things I have had buried for a long while.
Even though I don't like the place, I believe Jesus is using this experience to help me heal.
So it was good. Having said that, it is time for me to go.
Bless you all and have a good day or night.
Love Charisse
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Thursday, July 7, 2005 5:02 AM CDT
Hi Everyone,
I haven't updated for a while and thought I should quickly update.
I have been having a hard time. I know to say that might and probably does make family feel upset to hear that. I am sorry.
I have had a lot of anxiety and feeling depressed and it has been getting to a very intense level. Please pray for me.
I had a psychologist appointment today and I don't feel like it has helped at all. Tonight, to be honest, I feel like taking myself down to the hosptial, but I am not going to do that.
I have a headache that just will not go away and my head feels like it will burst and I need some relief.
Sorry to complain but this journal is used to, not only update everyone, but get my feelings out as well and helps me to deal with my feelings. I just don't want people who are closed to me to feel too alarmed or upset about how I feel or am coping.
Reading your messages in my guestbook really lights up my day. I feel encouaraged and loved and that is a big thing when you feel so down.
My platelet count is usually in the 100 000 which is very good and I got a scare when it went down to 60 000 the last couple of weeks. That never usually happens for me and I couldn't understand it. My bone marrow biopsy was really good. So I rang my doctor and he said that it is not a bone marrow problem but rather that, it is suggested, that it is my intense anxiety that is the cause of the problem.....I am not surprised since anxiety is known to have a profound affect on blood counts. However, I was relieved to hear that it was not the marrow causing that problem and the doctor has no doubt that the platelet count will return to the 100 000's when I feel better emotionally.
Tomorrow I am going on a "tour" with my old social worker from the Women's and Children's hospital. That is where I was diagnosed with FA and where my brother died.....of which I am dealing with a lot of grief right now. You would think that it was only yesterday that I lost Shannon instead of it being 11 years ago. You know, if you live in denial about things like this, your body eventually ends up dealing with it and that is what I am doing and it doesn't feel very pleasant at all.
However, I praise God for my excellent health with FA! It is a true testimony to God's goodness.
Oh, I never finished saying about the "tour" with the social worker. My doctor has closed his private practice and I have to go back to the children's to be treated by him and it means facing a whole lot of stuff to do with my brother's death and my own health and "childhood" there. So the social worker is going to help "desensitise" me to the hospital since I have felt very panicked over the whole ordeal. That is happening tomorrow.....which is Friday for me in Australia.
So please keep me in all your prayers. I know that through all this healing will eventually come.
Bless you all.
Please remember Maria Godwin, who has FA, going through treatment for cancer, and please remember and pray for Nicholas Boggs as he adapts to not been able to eat.
Thank you members of Prayer Bears and Angel_Wings for praying for me.
Thank you to Teresa Clifton for being such a great support and friend. She also has a little girl with FA.....Emma Clifton.
Thanks FA Adults....you guys are great!
Bless you all and thank you for keeping me in your prayers.
Love Charisse
