Tuesday, March 20, 2007 5:34 AM CDT
Hello All,
finally got part of my "other" lab results. I am not up to sharing entirely public yet about everything....but they were better than the other lab results which I praise the Lord for....It felt like forever to get these results and I have been so anxious this week....I think I cried every day....some other circumstances also made this week a real tough one...but that is another personal matter not to do with FA. Alan spoke to my haem aboutt he run around with results and he was very sorry when he heard how much stress we have been through the last 4 weeks and especially this week while waiting. They thought someone was working on my results who is actually away on leave...and were so vague about it....I should have rung the hospital when I suspected that this particular person was on leave...but the doctor didn't "ask" about this until just a day ago! I have felt very frustrated. It is a relief to get some of my results....however, because of all the hold up my cytogenetic results are taking longer again...so have not got them yet!
On to another topic. Isaac and I went to the zoo last Tuesday with his kindy. I was very anxious about how he would go on the bus. I know there are a lot of people that send their children on the bus to school or pre-school in different places...but Isaac is too small....according to me....4 year olds are just too little to be on buses without seatbealts...that is actually how I feel....I was worried...talked with the teachers and they reassured me that they would be SO strict with the kids and I just prayed that Jesus would keep Isaac safe. Naturally, despite my anxiety about it, Isaac enjoyed being with his class on the bus and it was good anyway....Jesus kept them safe...that was a huge step for me to allow him on the bus.
Being at the zoo was fun. It was a good distraction for me since I didn't have my results and was so worried. I was heaps tired and have felt so fluey....I have not had bad gums for a good couple of months and now they are swollen and bleeding...cause of stress....however, I loved the zoo. Isaac has a special friend. He has a friend! I am SO thrilled! They chose each other as partners and walked around the zoo together in their groups. I loved watching Isaac interact with the other children...and the teachers gave them a strict talk about how "if their mummy or daddy or grandparents are here"...then they cannot go off with them...they will assume they are lost...they need to listen to their teacher who takes their group. I was SO impressed with how Isaac listened and obeyed the teacher even though I was there! He didn't disobey! We had a wonderful time looking at the animals and interacting with the children. I was proud of myself...it was a big day. I had to leave an hour before the children did....my energy was gone. My friend took me home and I slept all the way home. I then rested at home for a good while before I went back to kindy to pick Isaac up for home.
Please keep praying for us...we had something tough happen in our family...not related to FA....but when something is on top of the stress already with FA...you feel like you are going to burn out! So please pray for us.
I will share more with my results when I feel able to...and when I feel like I am more relaxed from everything.
Thank you for the support from my mum and dad and Denise (Alan's mum), and my Aunty and Uncle who have been so patient with my anxiety while they have been here on holiday. I love you guys. Thanks to my sister, Liesl and her husband, Tim as well.
I am going to sign off for the evening. Please leave a note in my guestbook to let me know you have been....I appreciate the support and it helps me to feel like I am not alone.
Update soon again,
Love Charisse
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Friday, March 9, 2007 10:08 PM CST
Hello all,
another quick update. My fevers have reduced and my neutrophils are up to 900 from my last test on Tuesday. This is good because they were 300 the test before and I was having those high fevers. Now my "weird" sweats which are not with a temperature ....I am sure are due to anxiety. I have had LOTS of anxiety lately. I am having regular panic attacks. I try to stop them but obviously my mind needs to express the anxiety...so it is doing it anyway. My psychologist used to tell me that it was my body safe-guarding my mind. It was a safety mechanism when my brain could not deal with the amount of stress that I was under. As long as I am in a safe place...the anxiety attacks are ok on my health...it is a problem if I am alone or in the car driving or something. However, Alan has been giving me lots of support.
I do have some of my marrow results back. However, I am not up to sharing them yet. I have 2 labs doing my results because last time there was an error. SO I get the 2nd lot of results on Tuesday. Don't guarantee that I will share results straight away. I am very private and it was a big step to share my blood results at the top.....I am just very private until I am ready to share.
Please pray for me. I need it. I am trying to relax here!
On Tuesday Isaac and I are going to the zoo with his kindy. I am nervous and looking forward to it. The kindy has put some of my concerns at rest which is good. I just don't seem to be in a relaxed state right now. I feel like I need to grab Alan and Isaac and slip away from everyone at the moment. I need time out from everything...I am getting carried away again....the zoo should be good...just a long day for both Isaac and I.
Ok, I have a headache and need to do some stuff before i can sit down with Alan and relax. Isaac is in bed...what a relief for now because today I am feeling very depressed. I don't like him seeing me this way. Pray I feel better soon. This feeling of being depressed is so discouraging.
Lots of love,
Charisse
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Saturday, March 3, 2007 7:49 PM CST
Hello All,
I have not updated for a while.....almost 4 weeks!
Ok, so my shoulder is still sore and I have not done anything more about it since the diagnosis and the ultrasound that I had.
The MRI of my head and neck and ear was all clear...no abnormalities showing which is good. However, we still could not find a reason for the rining ear and part deafness....well it happened years ago when I was very sick with kidney failure and they gave me lots of IV antibiotics...they think that something happened to the nerve of my ear with the anitbiotics and it may not be able to be fixed...so I put up with the ringing..ahhhh.
Had my bone marrow biopsy/aspiration on the 20th Feb and the procedure went smoothly. The staff were nice. Now I am just waiting for my results and have been going through anxiety at different stages about that.
I have been having fevers following the marrow with intense hip pain so they did took more blood and did cultures and blood count and inflammatory markers. Nothing exciting showed up except a very big drop in my wbc and neutrophil counts....it was 300 only...I am usually about 1000 or over....so I could have come in contact with something that caused this and hence the fevers....also a low count can cause low grade fevers. Yesterday was the first time I didn't have a fever and I have blood taken again with my infusion on Tuesday...I usually have this on a Friday but Isaac has his first zoo outing with his kindy and I want to go with them...so having procedures done early so I can recover with more time so I can go with Isaac.
That is all to update on right now. Thank you so much for reading and please leave a message in my guestbook. It really helps me feel like i am not alone!
Thanks Guys!
Love Charisse
