Friday, April 27, 2007 5:56 AM CDT
Hi Everyone!
Wow, I have not updated for a little while and I am having trouble remembering where to start.
Oh yes, Brooke, Paul and Jasper came around to visit us from Western Australia during the Easter break. Jasper is a little younger than Isaac and has FA. They got along very well and were playing together...both very hyperactive that day..but it was a good visit and we enjoyed meeting Brooke (thank you!) and Paul (Bless you!) and Jasper. We had dinner together and just hung out. It was good. It is always nice to meet another family with FA in Australia...we are so few and far between.
It has been school holidays and Isaac was sick for the first week....he ended up needing antibiotics...so we were not able to do any planned things for the first week....however, the second week he has been well...and we have done some special things. We had a play date with his kindy friend...and met the parents...that was nice. We have another play date tomorrow with a church friend coming over to play and Isaac got to go to child care (which is a treat for him)...on Tuesday just gone. Actually it was also nice for me after him being sick all last week because I got up in the morning and was able to take my time and treat myself to an hour long bath...nice hot bath...then I just got myself ready and had lunch and spent a couple of hours out at my girlfriend's house...that was nice...and I didn't have to run after a child. I really enjoyed afternoon tea with her. Then I came home and cooked tea...un-interrupted (if that is a word). Alan picked Isaac up. He was there all day so he was tired but he had fun..and then another girlfriend popped by and yeah, it was good.
I have some appointments coming up. I have a haematologist appointment in a week...my infusion on the Friday..oh and they are re-testing me to see if the UTI is all dealt with.....
Otherwise, just moving through life. Did some more singing at church last Sunday and really enjoyed that....
It was my mum's 60th last week and my sister and I were working on a scrapebook for her birthday....it worked out really well. My dad's birthday a week before...so busy with birthdays...my birthday is in 3 weeks...wow. I will be 29!
Thanks to everyone who gives me and shows me support. I really appreciate. Sometimes I get so down...very down...so my heart feels so much joy when I see people's notes and feel their support. So thank you.
Ok, well I am going to go and relax for the evening. I will catch you up on things later!
Love Charisse
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Sunday, April 8, 2007 0:43 AM CDT
Happy Easter to All!
On that note I do realise that there are many people who are having a very difficult Easter and my heart and prayers go out to those people.
Please pray for Little John...John Smith....his mum, Judy, let the FA group know today that he has needed to go on the ventilator because his lungs were not being so good...he has FA and had a transplant a little while back. Please pray that they find out what is wrong and that he pulls through ok.
Life has been a bit rocky in areas since I last updated. A couple of things have not been related to FA and are of a personal nature to our family.....it has been really stressful..but I can see that God will pull us through...when I really think about it I can see Jesus in the situation....I can tell you that there are many, many times that I feel helpless even with this situation....but I can still see God being faithful to both Alan and I and Isaac.
On the medical front. I had a fever and have been feeling fluey for about 8 weeks and was starting to feel very depressed with this feeling and it has been sapping the energy out of me...so I had an infusion done a week ago...and some bloods....also the specialist thought to test for a urinary tract infection. You see, I have not been having any pain in relation to that type of infection....the specialist asked me to follow my temperature 4 times a day and record it and we did the test for this infection. Well my temp has been a low grade temp almost all the time...so they thought about a low grade infection that is not manifesting itself properly because of marrow suppression...my general white blood cell count has dropped the last 2 counts .....anyway, I do did have a urinary tract infection...the infection was not high grade and hence why it has been not giving me pain and only strange fevers ....and the wbc has been low because it cannot deal with it....so I started antibiotics for it a week ago and am hoping that my temp chart will show that I no longer have low grade fevers ....and that I will feel better. It is a bit hard to tell right now because this week I have had an infusion reaction...which makes me feel very flat and have painful legs and headaches...and blurry vision! It was so bad that I had trouble reading the prices of groceries at the shops the other day. Last night i had a bad time of it. I was awake imbetween 2am and 6.30am with pain....Alan was pretty much massaging my legs the time that I was awake and I was quite distressed.
I have also been working on an item to sing at church for Easter Sunday and was terribly upset that having no sleep would keep me home today.,...but I am amazed that I made it to church and still seem to be ok...just completely exhausted and still in pain.....by God's grace I managed to sing the item with my sister and Alan (we did a trio)..and I was proud of myself.
Now, I need to force myself to lie down and have a rest.
Oh...more dramas since I have updated...there are quite a number more but I won't share them all here.....
Last Thursday when we got home we noticed our cat, Matilda, was hopping on 3 legs...her back leg...I can't remember which one right now...hehe ...that shows I am tired....one of her back legs was tucked up...I thought, "oh no" and had some dread. We took her to the vet and they told us she had been in a nasty cat fight and had puncture wounds all over her thigh...antibiotics and some pain killers...come back home and she should be right after the weekend....nup....come Monday she was still very lame in that leg....took her to her vet and he said that there were scabs all over her....but they were healing and she needed an x-ray to rule out damage to her pelvis...not sure if she was hit by a car or something.....my pulse quickened....only recently it feels like we had to say goodbye to our beloved cat, Jemima.....Isaac was emotional with that and he remembered that Jemima went to the vet and never came home.....Matilda had to stay the night and he said, "mummy, why can't Matilda have a big bandaide and just come home?".....I told him that I wish it was that easy and that she had to have a picture taken of her bones in her leg and we will see how she is tomorrow...you see we don't have the money to do surgery...like put a pin in or care for a cat that needs lots of money...so I was dreading any news that may mean saying goodbye.
That night I literally cried out for mercy from God....I know it is just a cat to some people..but not to us....the next day it was good news....it was a break...at her knee....but clean and still in alignment...do we want to set her leg....no surgery......we could manage that...she is only 3 years old and so we put a cast on and she should recover 100% So she is confined to a dog cage in our dinning/living area for 6 weeks. She cannot get out....take her out for a quick cuddle...but complete bed rest! Talk about caring for another baby! She has been getting better at dragging herself around with the cast....missed the kitty litter....I am a clean freak and so have felt very anxious about mess....also I don't clean the cat litter and mess because it can be dangerous with marrow suppression and some bugs that can come in litter trays.....the ablutions...hehe...so Alan does most of it...if I do need to do dit when Alan is not home....I wash very, very well...but we try and avoid me doing it when we can...so far she has only messed one time when I was home without Alan....and my nanny helped me clean it all up....in fact she did the majority of it because I had to hold Matilda and she was not confident with handling the cat......we did it together.
Yesterday she managed to get her stuff in the kitty litter..,..what a relief!!!!
Anyway, this is only some of all of stuff...I know she is not a person.
Other medical stuff. My blast count...ready to share.....last year the second count for my blast count when re-done was 6%....5% and under is normal...so 6% is considered in the leukaemia side of things....this year the count came back at 7%....so about the same...not much change.....I had two counts done this year as well....one lab came back at 10% which I was not happy with at all....and then the second and more experienced lab came back at 7%...I know not heaps of difference but better and the count is about the same. That doesn't mean that I am happy. I know how serious blast counts are with FA and leukaemia.
I have to be honest. We will monitor this carefully like we always have...but I need to be honest. Right now Alan and I don't feel like God has plans for us to attempt transplant. I don't know how anyone feels about that....this decision would be made right now in full knowledge of how quickly FA can deteriorate....there are many reasons why we have not attempted transplant earlier with my marrow chromosome changes....and I would never be able to explain all the details....each time we make a decision we make it with the full knowledge of how serious FA is and I go through a grieving stage and really struggle....but you know...I struggle more with making a decision to transplant with the age that I am...with being a mummy and with the desires that I have to keep living life to the full. I hope you guys understand when I say that. There are some things I....Alan, Isaac and I would like to do as a family if we don't choose transplant this year.....we want to live it fully...and this is very important....now I am not giving a "goodbye" speech at all...just letting you know where I am at and I will fight even if I don't do a transplant...I have always been a fighter........but I praise God that He is looking after me and helping us make decisions that are right for us.....of course....we have done the look for a donor and have looked at preparing for a transplant....so I don't have to make a final decision that I never will....I can still turn around and do it...but it is something I strongly do not want to do right now...strongly....and that is all the explanation that I can give...but we will always monitor the marrow so we have a choice and so we can have full knowledge and be wise with what is right for us.
I hope I have not shocked people with that...I felt like I needed to share.
John Hanna, Alan and I are thinking and praying for you as you have your surgery.
I have written so much and need to rest.
Please say a prayer for all those FA children out there who are having difficulty...those who are struggling after transplant, those who have not had one.....those families where someone has already passed away...please pray...FA is horrible...I always have to tell myself that God can do miracles as well.....so pray....it is really worth it. I have already seen major miracles in my life and it spurs me on and gives me hope.
Ok, gotta go.
Love Charisse
Monday, April 30, 2007
Saturday, March 31, 2007
March 2007 entries
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
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
--------------------------------------------------------------------------------
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
Wednesday, February 28, 2007
February 2007 entries
Saturday, February 10, 2007 7:46 PM CST
Hello Everyone!
Despite the top "date", it is actually 12.14pm on Sunday afternoon here the 11th Feb!
I have had a busy week. Monday, just gone. I had my shoulder ultrasound which showed that I have bursitis and that is why my shoulder is so sore. For those of you who are only just reading up on me now...I had a fall about 12 weeks ago through a deck chair and was holding Isaac so I didn't support myself...I naturally went to protect his head and damaged my shoulder. The bursa in my shoulder which carries the fluid to lubricate the joint of the shoulder has become inflammed from the fall and literally blown up. Whenever I move the joint, the bursa now becomes pinched in the joint. Cortisone injections deep into the shoulder are the usual treatment but my platelet count has been a bit low so we will check with my haematologist as to what he thinks is best. Otherwise, I might just try heat and ultrasound therapy on my shoulder. It will take a bit longer to get better but might be less risky. My shoulder has been very sore. I am glad that I know why now!
That Monday I also had my liver or upper abdominal ultrasound that I was "supposed" to have done a long while ago. My liver enzymes have been all high for years and they know it is related to the oxymethalone I was on for years to help my bloods. Even though I have been off the steroids for at least 4 years now, the enzymes continue to be high and so they keep an eye on my liver via ultrasound. I have not got the results yet. I need to see my specialist.
I had lots of "kindy blues" this week. It has been hard having Isaac start full time kindy. I am not used to being up at a certain time to pick him up! It is too tiring for me to get up to take him early in the morning so my husband does it....or mum helps out. But I have been trying to set a goal to pick him up every day and found myself in tears a lot and getting very tired. I saw my GP on Wednesday and broke into tears in his room. I talked about how I missed Isaac and felt so pressured by everything. I have had tests to do for my health and have some serious tests coming up....so I think I have been overwhelmed. My doctor helped me to put things into perspective and we have made a goal for me that is less stressful. The key is to understand that it is ok if I cannot pick Isaac up and that there are people to help. I tend to get flustered when I think I should be doing something and then I need some help! But hey...my doctor pointed out to me that many families have help these days and there is no "normal"...so to do the best that I can and not to go over and beyond my own boundaries. The talk helped.
On Friday just gone I had an MRI under anaesthetic. They checked on my sinus areas and my face...head and neck screening of cancer for FA.....just routine and then for my ear which is partly deaf and rings constantly...which drives me crazy many times! It went well. Although I was in a panic most of the time at the hospital. I was supposed to have my IVIG infusion after the MRI and no one seemed to know what was going on. The nurses felt like they were being difficult and I did not have confidence that it was all organised! So I had a few tears...not crying...just tears and a little panic at certain times. Alan's mum was with me and helped me to get through. Alan was also there at times. I ended on having my infusion and got home at 8.15pm that night.
I have been tired. Anaesthetic always seems to take a while to wear off for me. Yesterday I went to a wedding and then to Alan's dad's 65th b-day party...which was all enjoyable and I took it as easy as I could...but today I feel very tired. So I have had a shower and am sitting in my "day PJ's"...I never wear them at night. It feels nice to just dag around. Alan and Isaac went to church this morning but we thought it may push me too far if I went and that would have been right. I needed to rest and sleep. Just so you all know...I don't regret going to the wedding and the party. It was fun and I enjoyed being a part of these people's special day!
Ok, now...Alan and Isaac should be home soon. I wanted to read my Bible before Isaac got back!
Bless you all and please pray for me as I go for a bone marrow biopsy/aspiration on the 20th Feb!
Love Charisse
Hello Everyone!
Despite the top "date", it is actually 12.14pm on Sunday afternoon here the 11th Feb!
I have had a busy week. Monday, just gone. I had my shoulder ultrasound which showed that I have bursitis and that is why my shoulder is so sore. For those of you who are only just reading up on me now...I had a fall about 12 weeks ago through a deck chair and was holding Isaac so I didn't support myself...I naturally went to protect his head and damaged my shoulder. The bursa in my shoulder which carries the fluid to lubricate the joint of the shoulder has become inflammed from the fall and literally blown up. Whenever I move the joint, the bursa now becomes pinched in the joint. Cortisone injections deep into the shoulder are the usual treatment but my platelet count has been a bit low so we will check with my haematologist as to what he thinks is best. Otherwise, I might just try heat and ultrasound therapy on my shoulder. It will take a bit longer to get better but might be less risky. My shoulder has been very sore. I am glad that I know why now!
That Monday I also had my liver or upper abdominal ultrasound that I was "supposed" to have done a long while ago. My liver enzymes have been all high for years and they know it is related to the oxymethalone I was on for years to help my bloods. Even though I have been off the steroids for at least 4 years now, the enzymes continue to be high and so they keep an eye on my liver via ultrasound. I have not got the results yet. I need to see my specialist.
I had lots of "kindy blues" this week. It has been hard having Isaac start full time kindy. I am not used to being up at a certain time to pick him up! It is too tiring for me to get up to take him early in the morning so my husband does it....or mum helps out. But I have been trying to set a goal to pick him up every day and found myself in tears a lot and getting very tired. I saw my GP on Wednesday and broke into tears in his room. I talked about how I missed Isaac and felt so pressured by everything. I have had tests to do for my health and have some serious tests coming up....so I think I have been overwhelmed. My doctor helped me to put things into perspective and we have made a goal for me that is less stressful. The key is to understand that it is ok if I cannot pick Isaac up and that there are people to help. I tend to get flustered when I think I should be doing something and then I need some help! But hey...my doctor pointed out to me that many families have help these days and there is no "normal"...so to do the best that I can and not to go over and beyond my own boundaries. The talk helped.
On Friday just gone I had an MRI under anaesthetic. They checked on my sinus areas and my face...head and neck screening of cancer for FA.....just routine and then for my ear which is partly deaf and rings constantly...which drives me crazy many times! It went well. Although I was in a panic most of the time at the hospital. I was supposed to have my IVIG infusion after the MRI and no one seemed to know what was going on. The nurses felt like they were being difficult and I did not have confidence that it was all organised! So I had a few tears...not crying...just tears and a little panic at certain times. Alan's mum was with me and helped me to get through. Alan was also there at times. I ended on having my infusion and got home at 8.15pm that night.
I have been tired. Anaesthetic always seems to take a while to wear off for me. Yesterday I went to a wedding and then to Alan's dad's 65th b-day party...which was all enjoyable and I took it as easy as I could...but today I feel very tired. So I have had a shower and am sitting in my "day PJ's"...I never wear them at night. It feels nice to just dag around. Alan and Isaac went to church this morning but we thought it may push me too far if I went and that would have been right. I needed to rest and sleep. Just so you all know...I don't regret going to the wedding and the party. It was fun and I enjoyed being a part of these people's special day!
Ok, now...Alan and Isaac should be home soon. I wanted to read my Bible before Isaac got back!
Bless you all and please pray for me as I go for a bone marrow biopsy/aspiration on the 20th Feb!
Love Charisse
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