Hello All,
well a day or so later I noticed something on Isaac's new tooth. We rang on Monday to ask about it and it is just a cosmetic thing where the cap has been put on and can be fixed in the chair...or funny little bed thing they have for children. Isaac's follow up appointment is on Wed next week. What a relief everything has been ok. He has been SO well this week...no ulcers, no tosilitis and no sore tooth!
After Isaac's surgery I really got very tired. I slept til 1230pm one of the days after. I felt like IVIG was making me tired too but that has passed now. I did get a horrible ulcer on my tongue which is quite deep and my tongue went all white on the sides...that whiteness has decreased now but my tongue is still sore. The ulcer seems smaller today. I have been doing mouth care and next week on Thursday I have an ENT appointment to check my mouth and tongue. Looks like this was all tired induced though and stress from doing heaps more last week.
Today I woke up with an annoying little cough that comes from the base of your throat. I had more Goji Juice and stuff to help me fight it off and not catch the full thing. I also did nothing today and just rested. Isaac had a school appointment for his first year at school next year but I had to let Alan just go, otherwise I would have been pushing myself.
However, yesterday I managed to get to Isaac's preschool for their book launch. All the kids were dressed up in pirate outfits...and Isaac did as well. I honestly thought he would not want to do it. I got there at the end of morning preschool and they were all out on the grass in their make shift pirate ship and they performed 3 pirate songs for us parents and then we had a sausage sizzle (sausages/bread/sauce on the Barby or BBQ). It was a lot of fun and I was so glad that I could watch Isaac. As soon as he saw me he was singing the loudest and doing the biggest actions with a huge smile on his face and many parents commented on how well "that child was singing"...hahaha....it made me laugh.
I was supposed to have a chest ultrasound today to double check that the fluid on my lung is gone....and then I was supposed to see my specialist and have bloods done. I have been SO tired this week...I knew my body could not cope today so we re-scheduled the chest ultrasound until Friday and when I see my GP tomorrow I will have bloods and then we will call the specialist with all the results on Monday. I just feel like whenever I go out...it is to appointments and I never get to just go out and have fun with Isaac because I am too tired from appointments! I just need to be able to relax sometimes!
Isaac didn't have a sleep today. I told him he needed to just rest in his room until Mummy came to get him if he couldn't sleep. He couldn't sleep and part way through his rest time I got out some books for him to look through quietly in his bed. He was so good and read them all to himself until I said he could come out 1/2 hour later. Alan slept for an hour...after Isaac was out of his room again we did some play dough for an hour.....now Isaac is watching a one of his DVD's.
Alan's sister is coming tonight to give me a massage....oh it will be so nice. She came on Saturday and gave me one...a professional one...and Alan too. Jacqui is doing a massage course! She is going to be practising as a fully qualified massager and while she is doing her course she has asked for people to practise on! She does it really well and it has been relaxing for me as well. I get so stressed about FA and other issues related to it that I seem to not relax....and this is really good for me! So Jacqui....if you are reading this....THANKS and you are REALLY GOOD! I hope you get everything you need to get and finish your course and really do well with the massage therapy....I know you will...and it is exciting that you are doing what you really want to do!
Well, if bloods are really different...I will let you know. I hope the platelets are more up this week. They dropped last week. The haemaglobin was holding at 12 and neuts had gone up to 1000 from 100. Liver results were coming down...oh and I have not felt nearly as nauseated this week...what a relief!
I will also let you know about the chest ultrasound for the fluid on the lung. Otherwise, I really think I am getting better slowly.
Yesterday I did some laps around our huge backyard for exercise and I have done some ball play with Isaac outside. I just need to be careful because if I do too much I tend to faint.
I also went to the shops for the first time since the 4th September! And not in a wheelchair. I am not puffing anymore...just got to watch the fainting. I don't need nebulisers anymore...so I am doing well.
Ok, I suppose I better go. Oh I have been having a GREAT time on the Fanconi Island site! Racquel has done a great job with that site and it is great having somewhere to go where you can get emotional support with FA and talk to friends about anything you want. There is so much that benefits us FA families on that site...so if you have not signed up.....I would recommend it!
Better go!
Thanks for checking on me.
Love Charisse
Wednesday, September 26, 2007
Friday, September 21, 2007
Family Update
Hello All,
well the 19th September has come and gone. That was my original date for my gynae surgery I shared about a little while ago. I definitely would not have been up for that after the pnuemonia so soon. The new date was set for 15th October...however, I am not sure if I will be ready for that either. I am really doing well with my recovery but my marrow is still jumping all over the place...neuts up this week and platelets dropped a bit again.
However, liver results have come down...everything is just everywhere right now. I know one thing though - I am getting stronger each day and have put some weight back on. I lost 10 kilos in total but since the eating has picked up again a couple have come back on again which is good I suppose.
I had infusion (IVIG) this past Wednesday. It went well. I usually have it on a Friday but Isaac had his tooth restoration and tongue surgery today and I needed to be with him. I am SO tired. I have not done this much stuff since I was sick in hospital!
So today Isaac had his surgery and it went well. I had a hard time getting up this morning but mum came with Isaac and I. She drove the car. Isaac did so well. He was a bit rushed and upset when we arrived but after we went into the surgical waiting area in the theatre part he was ok when the nurse offered him a helium balloon. He started talking right away then and skipping around. So he skipped right into the theatre to the doctor and hopped up on my lap understanding that he was going to be given sleepy medicine before he had his tooth fixed. Even though we had talked about it with him, I think he was surprised with the little anaesthetic mask thing they used for the gas and he let them put it on while cradling in my arms but when he was not falling asleep straight away I saw panic in his eyes and he fought and that made me feel emotional and almost cry. He still had his balloon so I was asking him to look at me and look at the balloon and finally he relaxed and he went limp and I found that really emotional. I hate the smell of anaesthetic and operatiing rooms. I am so used to it from procedures with FA and biopsies...as soon as I walked in I tried not to react to the smell. However, after Isaac was falling asleep and was on the table I looked back at him and felt so strange. I found all of that really exhausting and felt like I was going to pass out! Mum and I went for some lunch and I almost did pass out. Once I had a rest on the couch and had some food we headed back to the day surgery and they called me to say Isaac was just out and did I want to come in. I did. He was crying a little when I came in and he had a jelco in one hand and some blood on him. I felt heaps emotional. They carried him out to a lounge that I sat on. Isaac became really aggitated and cried hysterically for about 50 mins. I could not stop him. It was heart breaking. I felt like crying too. He has a phobia about bandaides and of course he had the jeloc/IV access in and he was shaking that about and kicking and all sorts. He also was bothered by the name band on his leg and got so upset. Eventually I asked that they take the IV access out even though he had not eaten or drunk yet and cut the name band off. It was about 50 mins after that he calmed down and then we snuggled but I found that 50 mins of him being really upset rather exhausting and emotional. I wanted to break down and cry. I didn't want Isaac to see me cry.
Anyway, his tooth looks lovely. They cut his mild tongue tie too. He doesn't appear to remember the upset that he had. I think he gets really aggitated like I do after an anaesthetic. I know all children do but his was SO long. It really took time for them to understand that he is honestly freaked out by things like bandaides and anything stuck to his skin.
I am exhausted tonight and glad that it is all over. Now I need to catch up on some sleep and get some rest again because I am beat!
Alan is well. The changes with FA Australia are very exciting.
Ok, I will finish for now. Thanks for checking up on us!
Love Charisse
well the 19th September has come and gone. That was my original date for my gynae surgery I shared about a little while ago. I definitely would not have been up for that after the pnuemonia so soon. The new date was set for 15th October...however, I am not sure if I will be ready for that either. I am really doing well with my recovery but my marrow is still jumping all over the place...neuts up this week and platelets dropped a bit again.
However, liver results have come down...everything is just everywhere right now. I know one thing though - I am getting stronger each day and have put some weight back on. I lost 10 kilos in total but since the eating has picked up again a couple have come back on again which is good I suppose.
I had infusion (IVIG) this past Wednesday. It went well. I usually have it on a Friday but Isaac had his tooth restoration and tongue surgery today and I needed to be with him. I am SO tired. I have not done this much stuff since I was sick in hospital!
So today Isaac had his surgery and it went well. I had a hard time getting up this morning but mum came with Isaac and I. She drove the car. Isaac did so well. He was a bit rushed and upset when we arrived but after we went into the surgical waiting area in the theatre part he was ok when the nurse offered him a helium balloon. He started talking right away then and skipping around. So he skipped right into the theatre to the doctor and hopped up on my lap understanding that he was going to be given sleepy medicine before he had his tooth fixed. Even though we had talked about it with him, I think he was surprised with the little anaesthetic mask thing they used for the gas and he let them put it on while cradling in my arms but when he was not falling asleep straight away I saw panic in his eyes and he fought and that made me feel emotional and almost cry. He still had his balloon so I was asking him to look at me and look at the balloon and finally he relaxed and he went limp and I found that really emotional. I hate the smell of anaesthetic and operatiing rooms. I am so used to it from procedures with FA and biopsies...as soon as I walked in I tried not to react to the smell. However, after Isaac was falling asleep and was on the table I looked back at him and felt so strange. I found all of that really exhausting and felt like I was going to pass out! Mum and I went for some lunch and I almost did pass out. Once I had a rest on the couch and had some food we headed back to the day surgery and they called me to say Isaac was just out and did I want to come in. I did. He was crying a little when I came in and he had a jelco in one hand and some blood on him. I felt heaps emotional. They carried him out to a lounge that I sat on. Isaac became really aggitated and cried hysterically for about 50 mins. I could not stop him. It was heart breaking. I felt like crying too. He has a phobia about bandaides and of course he had the jeloc/IV access in and he was shaking that about and kicking and all sorts. He also was bothered by the name band on his leg and got so upset. Eventually I asked that they take the IV access out even though he had not eaten or drunk yet and cut the name band off. It was about 50 mins after that he calmed down and then we snuggled but I found that 50 mins of him being really upset rather exhausting and emotional. I wanted to break down and cry. I didn't want Isaac to see me cry.
Anyway, his tooth looks lovely. They cut his mild tongue tie too. He doesn't appear to remember the upset that he had. I think he gets really aggitated like I do after an anaesthetic. I know all children do but his was SO long. It really took time for them to understand that he is honestly freaked out by things like bandaides and anything stuck to his skin.
I am exhausted tonight and glad that it is all over. Now I need to catch up on some sleep and get some rest again because I am beat!
Alan is well. The changes with FA Australia are very exciting.
Ok, I will finish for now. Thanks for checking up on us!
Love Charisse
Saturday, September 15, 2007
Oh Dear....
Oh Dear,
that is what I feel like saying....and a big *SIGH* accompanied with it.
Isaac had tonsilitis. We took him to the doctor on Thursday and he had ulcers in his mouth and some puss and redness by his tonsil. So he is on antibiotic. Not long after beginning that he broke out with a couple of nasty ulcers on his bottom lip and that is all swollen too. My little boy is not one happy chappy. He has been waking up frequently during the night and whinning a lot. Today, it has felt like he has cried all day. I have a headache. Sometimes crying really gets at you, especially the whinning that goes along with it. He has not been able to do one thing today without breaking down. He is now in bed and I am glad because both Alan and I were starting to feel crazy while he has been crying and whinning. We have not been able to brush his teeth so are trying to do salt washes for his mouth care...very hard to do with a 4 1/2 year old who doesn't want a bar of it. That has been hard. We have needed to wipe over his broken tooth with a salt water tissue as well. He has swollen gums too. I know dear Alan has been dealing a lot with all the physical stuff with Isaac because it still exhausts me too much to do too much. Make sense? I hope Isaac sleeps well this afternoon.
I got to church last Sunday night for the worship. It was lovely. I must be heaps sensitive to perfume right now. I almost fainted at the church because of the ladies walking past me with perfume. We will hopefully get back for the worship again tonight.
Alan's brithday dinner was good. So many people. If you were there and are reading this...thank you for coming. I handled the night ok except when it hit 9pm. I had to ask Alan to help me on the floor in the corner because I was going to faint and throw up. I ended up throwing up a little there...just part of the exhaustion and the recovery from pneumonia. Mum and dad took me home earlier than Alan and then after everyone left again at home...I threw up again. I couldn't fall asleep until 3am...so I was so tired and slept the next day until 3.45pm!
Today I am still recovering from that party.
OK, I am going to go and sit down while Isaac is asleep and enjoy the quiet.
Thanks for checking up on me!
Love Charisse
that is what I feel like saying....and a big *SIGH* accompanied with it.
Isaac had tonsilitis. We took him to the doctor on Thursday and he had ulcers in his mouth and some puss and redness by his tonsil. So he is on antibiotic. Not long after beginning that he broke out with a couple of nasty ulcers on his bottom lip and that is all swollen too. My little boy is not one happy chappy. He has been waking up frequently during the night and whinning a lot. Today, it has felt like he has cried all day. I have a headache. Sometimes crying really gets at you, especially the whinning that goes along with it. He has not been able to do one thing today without breaking down. He is now in bed and I am glad because both Alan and I were starting to feel crazy while he has been crying and whinning. We have not been able to brush his teeth so are trying to do salt washes for his mouth care...very hard to do with a 4 1/2 year old who doesn't want a bar of it. That has been hard. We have needed to wipe over his broken tooth with a salt water tissue as well. He has swollen gums too. I know dear Alan has been dealing a lot with all the physical stuff with Isaac because it still exhausts me too much to do too much. Make sense? I hope Isaac sleeps well this afternoon.
I got to church last Sunday night for the worship. It was lovely. I must be heaps sensitive to perfume right now. I almost fainted at the church because of the ladies walking past me with perfume. We will hopefully get back for the worship again tonight.
Alan's brithday dinner was good. So many people. If you were there and are reading this...thank you for coming. I handled the night ok except when it hit 9pm. I had to ask Alan to help me on the floor in the corner because I was going to faint and throw up. I ended up throwing up a little there...just part of the exhaustion and the recovery from pneumonia. Mum and dad took me home earlier than Alan and then after everyone left again at home...I threw up again. I couldn't fall asleep until 3am...so I was so tired and slept the next day until 3.45pm!
Today I am still recovering from that party.
OK, I am going to go and sit down while Isaac is asleep and enjoy the quiet.
Thanks for checking up on me!
Love Charisse
Wednesday, September 12, 2007
Blood Results This Week
Hello All,
I have been feeling a little better the last 2 days. I have managed to have a shower without collapsing afterwards. I have still puffed a bit but much less than I was at the beginning of the week. I still have to have a good rest after the shower before doing much else but it is such a relief to be able to complete my shower without much drama.
At the beginning of the week I felt so weak in the shower. I have been sitting down on a chair. Once I got in the shower I felt like I could not get out again and then I would start to cry. It really discouraged me.
Today I have been shaky but still feeling a bit better and i think I am sleeping better at night too. Yesterday I gave Isaac a bath for the first time in 4 weeks! It was a bit puffing and mum took over after a while. I find drying him TOTALLY exhausting but I washed his hair and helped him learn to wash himself as well. The fact that I ran the water and did the majority of his bath except for drying and dressing (ok that is a lot to do) is an accomplishment. I have to look at the small accomplishments and congratulate myself otherwise I get too upset with myself.
Yesterday I managed to get to my specialist appointment for blood and a follow up an hour away. This is a GREAT accomplishment and I didn't throw up on the way. I tend to have car sickness right now and I can't handle trips. I either have to stop many times to get air or throw up or break out in sweats. I made it to the "cancer center" withouth too many dramas at all. So I handled a big outing which was good.
Blood. Last week I reported on my results and was really upset about my counts. What a difference a week makes! I had bloods yesterday and my haemaglobin has gone up from 98 (9.8) to 126 (12.6) which is in the normal range. I am usually about 140 (14) but I am really happy with this increase. May be that is why I feel a little better....or may be I am just recovering well. Actually the doctor says I am doing really well for someone who has FA. Those are not the only good results. Last week my platelet count was reduced to 38 000 and this week it has gone up to 65 000.....just in a week. My marrow is working very hard though. My MCV which shows how are your marrow is working...is usually in range ata 90 (normal imbetween 80 and 100) and this week is up at 103...so my marrow is obviously working hard for me. I usually am in range. Although with good results there are always the disappointing ones. I am waiting for the haematologist to talk properly about my neutrophils this week as they were 1000 last week and are only 100 (0.1) this week. Amazing how things change in a week. I did catch an extra cold from Isaac this week and I think that my marrow has taken such a hit with the pneumonia that the neutrophils reacted by reducing to only 100...a little scary but I will watch who I go near and what I eat while they are this low. I am inclined to want to have a test in a couple of days to see that it has gone up and I feel a bit safer. I have never been that low before! Not that I know of...so that scares me a bit...but look at my haemaglobin and platelets! They have gone up...on there way up. I must remember that in this recovery stage the marrow is building up strength and can go either way with results...down or up quite dramatically and not get myself too upset with huge change.
I am a little concerned about my liver. My GGT ezyme which usually sits at 1000 for me and that is really high...normal between 5 and 35...yep, I sit very high as a normal for me.....but have risen to 3917! Now that is high. So we are waiting to speak with my liver specialist to make sure that we don't have to be too worried. I know that high liver enzymes can cause nausea and I have had heaps of it. So we will check if this is a worry. As I said I had a liver ultrasound within 2 weeks ago and that was normal...so this could just be a later reaction from my liver as to how badly my body got hit.
Anyway, I am not so open with my counts but am feeling a little more comfortable sharing right now.
Isaac has been a little unwell. I don't know if you remember that he chipped his tooth...actually the enamel chipped off it and you cannot notice it but the dentist said he needed to have it fixed under a general a couple of months ago. They need to cap it to make sure that it doesn't get sore and infected. Well, Isaac has been booked for next Friday to have this done but he has been having high temperatures and crying and complaining of his teeth and his mouth. I also think he has a small ulcer on his tongue. He gum around his tooth is definitely swollen...so I am glad that he is having it done only next week because I don't want huge problems with it. I am suspecting the tooth is playing a role in the temperatures and unwellness because I can't see anything else. SO tomorrow he has an appointment with the GP to have his mouth checked. Check there is no abcesses or infection that needs to be dealt with ....also check his ears and mouth and stuff to make sure we are not missing something with these temperatures.
Isaac had a friend over today and really enjoyed the play after the panadol worked and his fever broke. He was back to normal...amazing! My friend is the mum of this child and we had a nice catch up time. I had not seen her since a couple of days before I was admitted into hospital. It is nice to be able to chat with a girlfriend.
Tomorrow my sister is coming around to be with me in the afternoon and help with Isaac once our nanny has gone home. Our nanny was unable to stay the extra hours to make sure I am ok for the last couple of hourse of the day before Alan gets home from work. We are not taking chances in leaving me by myself with Isaac at the moment while I am so tired and recovering. Would not be a wise move. We are trying to give me as much rest as possible.
On Friday night is Alan's 30th birthday dinner at a restaurant. It is going to be great. I am saving myself for it and trying to get so much rest in. As it is I may only be able to sit there and try not to get too carried away..I may not be able to endure the whole night but this is Alan's special night and I want to be a part of it. We ordered the cake today.
Well, this is a long post and I better go before I bore you all with it.
Thanks for checking up on me!
Love Charisse
I have been feeling a little better the last 2 days. I have managed to have a shower without collapsing afterwards. I have still puffed a bit but much less than I was at the beginning of the week. I still have to have a good rest after the shower before doing much else but it is such a relief to be able to complete my shower without much drama.
At the beginning of the week I felt so weak in the shower. I have been sitting down on a chair. Once I got in the shower I felt like I could not get out again and then I would start to cry. It really discouraged me.
Today I have been shaky but still feeling a bit better and i think I am sleeping better at night too. Yesterday I gave Isaac a bath for the first time in 4 weeks! It was a bit puffing and mum took over after a while. I find drying him TOTALLY exhausting but I washed his hair and helped him learn to wash himself as well. The fact that I ran the water and did the majority of his bath except for drying and dressing (ok that is a lot to do) is an accomplishment. I have to look at the small accomplishments and congratulate myself otherwise I get too upset with myself.
Yesterday I managed to get to my specialist appointment for blood and a follow up an hour away. This is a GREAT accomplishment and I didn't throw up on the way. I tend to have car sickness right now and I can't handle trips. I either have to stop many times to get air or throw up or break out in sweats. I made it to the "cancer center" withouth too many dramas at all. So I handled a big outing which was good.
Blood. Last week I reported on my results and was really upset about my counts. What a difference a week makes! I had bloods yesterday and my haemaglobin has gone up from 98 (9.8) to 126 (12.6) which is in the normal range. I am usually about 140 (14) but I am really happy with this increase. May be that is why I feel a little better....or may be I am just recovering well. Actually the doctor says I am doing really well for someone who has FA. Those are not the only good results. Last week my platelet count was reduced to 38 000 and this week it has gone up to 65 000.....just in a week. My marrow is working very hard though. My MCV which shows how are your marrow is working...is usually in range ata 90 (normal imbetween 80 and 100) and this week is up at 103...so my marrow is obviously working hard for me. I usually am in range. Although with good results there are always the disappointing ones. I am waiting for the haematologist to talk properly about my neutrophils this week as they were 1000 last week and are only 100 (0.1) this week. Amazing how things change in a week. I did catch an extra cold from Isaac this week and I think that my marrow has taken such a hit with the pneumonia that the neutrophils reacted by reducing to only 100...a little scary but I will watch who I go near and what I eat while they are this low. I am inclined to want to have a test in a couple of days to see that it has gone up and I feel a bit safer. I have never been that low before! Not that I know of...so that scares me a bit...but look at my haemaglobin and platelets! They have gone up...on there way up. I must remember that in this recovery stage the marrow is building up strength and can go either way with results...down or up quite dramatically and not get myself too upset with huge change.
I am a little concerned about my liver. My GGT ezyme which usually sits at 1000 for me and that is really high...normal between 5 and 35...yep, I sit very high as a normal for me.....but have risen to 3917! Now that is high. So we are waiting to speak with my liver specialist to make sure that we don't have to be too worried. I know that high liver enzymes can cause nausea and I have had heaps of it. So we will check if this is a worry. As I said I had a liver ultrasound within 2 weeks ago and that was normal...so this could just be a later reaction from my liver as to how badly my body got hit.
Anyway, I am not so open with my counts but am feeling a little more comfortable sharing right now.
Isaac has been a little unwell. I don't know if you remember that he chipped his tooth...actually the enamel chipped off it and you cannot notice it but the dentist said he needed to have it fixed under a general a couple of months ago. They need to cap it to make sure that it doesn't get sore and infected. Well, Isaac has been booked for next Friday to have this done but he has been having high temperatures and crying and complaining of his teeth and his mouth. I also think he has a small ulcer on his tongue. He gum around his tooth is definitely swollen...so I am glad that he is having it done only next week because I don't want huge problems with it. I am suspecting the tooth is playing a role in the temperatures and unwellness because I can't see anything else. SO tomorrow he has an appointment with the GP to have his mouth checked. Check there is no abcesses or infection that needs to be dealt with ....also check his ears and mouth and stuff to make sure we are not missing something with these temperatures.
Isaac had a friend over today and really enjoyed the play after the panadol worked and his fever broke. He was back to normal...amazing! My friend is the mum of this child and we had a nice catch up time. I had not seen her since a couple of days before I was admitted into hospital. It is nice to be able to chat with a girlfriend.
Tomorrow my sister is coming around to be with me in the afternoon and help with Isaac once our nanny has gone home. Our nanny was unable to stay the extra hours to make sure I am ok for the last couple of hourse of the day before Alan gets home from work. We are not taking chances in leaving me by myself with Isaac at the moment while I am so tired and recovering. Would not be a wise move. We are trying to give me as much rest as possible.
On Friday night is Alan's 30th birthday dinner at a restaurant. It is going to be great. I am saving myself for it and trying to get so much rest in. As it is I may only be able to sit there and try not to get too carried away..I may not be able to endure the whole night but this is Alan's special night and I want to be a part of it. We ordered the cake today.
Well, this is a long post and I better go before I bore you all with it.
Thanks for checking up on me!
Love Charisse
Saturday, September 8, 2007
Feeling Down
Hi,
I am feeling a bit down today. I seem to have one good day, one off day and today is the off day. I dislike how I feel and get very down when I am puffing and feeling faint as I even get ready in the morning and so I had a "melt down" today and was crying about it. I think that the FA kids are so brave when they have low haemaglobins and have lots happen to them. As a child, I had more of a carefree attitude even though I had lots of doctor's appointments. As an adult, it doesn't feel as carefree. You worry about every little thing and get really discouraged very easily. What I really notice is the difference in iron levels and how that is affecting me and it is a shock to my system and emotions. Other days I feel brighter, emotionally. Today I just feel down. I cannot wait until the oral fungal infection is gone either because it literally feels like I have a rock in my throat and I gag whenever I do something. That is miserable. I really admire kids like Nicholas Boggs who have so much to put up with but have a smile on their face most of the time. I know, as a human being, he would feel emotions as well...but he is such a trooper. Happy Birthday Nicholas! It is his birthday on the 10th! Be sure to wish him a Happy Birthday.
www.caringbridge.org/va/nicholas.e.boggs
This is his link
Anyway, I just needed to write some of my feelings down. I wonder if some iron tablets would help me..just a low dose. We will ring the specialist tomorrow to check that all is going well. I know I only see him on Tuesday but sometimes there are some important things to ask on the phone before you see them and Alan will be back at work on Tuesday so I want him to be able to ask some things as well. Mum will be coming to be with me on Tuesday. It will feel strange without Alan there that day.
So tonight we are trying to get to church for some worship. I have not been at church for many weeks because of sickness. Have no energy to get there in the morning and I know that around 5pm I will be very tired as well but I just want to be able to go for some worship and feel fulfilled again. We won't stay the whole service because of my energy levels but it will be nice. I am trying to do nothing at all today so I can get there.
Ok, I am going to have some late lunch.
Love ya all,
Charisse
I am feeling a bit down today. I seem to have one good day, one off day and today is the off day. I dislike how I feel and get very down when I am puffing and feeling faint as I even get ready in the morning and so I had a "melt down" today and was crying about it. I think that the FA kids are so brave when they have low haemaglobins and have lots happen to them. As a child, I had more of a carefree attitude even though I had lots of doctor's appointments. As an adult, it doesn't feel as carefree. You worry about every little thing and get really discouraged very easily. What I really notice is the difference in iron levels and how that is affecting me and it is a shock to my system and emotions. Other days I feel brighter, emotionally. Today I just feel down. I cannot wait until the oral fungal infection is gone either because it literally feels like I have a rock in my throat and I gag whenever I do something. That is miserable. I really admire kids like Nicholas Boggs who have so much to put up with but have a smile on their face most of the time. I know, as a human being, he would feel emotions as well...but he is such a trooper. Happy Birthday Nicholas! It is his birthday on the 10th! Be sure to wish him a Happy Birthday.
www.caringbridge.org/va/nicholas.e.boggs
This is his link
Anyway, I just needed to write some of my feelings down. I wonder if some iron tablets would help me..just a low dose. We will ring the specialist tomorrow to check that all is going well. I know I only see him on Tuesday but sometimes there are some important things to ask on the phone before you see them and Alan will be back at work on Tuesday so I want him to be able to ask some things as well. Mum will be coming to be with me on Tuesday. It will feel strange without Alan there that day.
So tonight we are trying to get to church for some worship. I have not been at church for many weeks because of sickness. Have no energy to get there in the morning and I know that around 5pm I will be very tired as well but I just want to be able to go for some worship and feel fulfilled again. We won't stay the whole service because of my energy levels but it will be nice. I am trying to do nothing at all today so I can get there.
Ok, I am going to have some late lunch.
Love ya all,
Charisse
Friday, September 7, 2007
Results
Hello All,
got blood results today and I am a little disappointed. I suppose it is good that they have not really changed at all. Haem 98 (9.8) still and platelets still about 38 000. It is so weird having these low counts and I know I am impatient for them to recover from being really sick. My haem was 140 (14) before the pneumonia. No wonder I feel tired on top of just recovering.
Oh well, wait til next weeks bloods again to see if anything has gone up again.
At least bilirubin is still steadily coming down and my eyes are not jaundice (yellow) anymore. Still a little ways to go until it reaches normal though.
Liver results have started to go back up to "my normal". Amazing how when I was sick they went down to the normal "normal" and then as I have gotten well they have gone back up to my disgustingly "high normal" but I feel a better with it up there...weird. Liver ultrasound shows no change and that my liver is just being my liver. So nothing to be worried about at the moment.
Ok, got to go.
Love Charisse
got blood results today and I am a little disappointed. I suppose it is good that they have not really changed at all. Haem 98 (9.8) still and platelets still about 38 000. It is so weird having these low counts and I know I am impatient for them to recover from being really sick. My haem was 140 (14) before the pneumonia. No wonder I feel tired on top of just recovering.
Oh well, wait til next weeks bloods again to see if anything has gone up again.
At least bilirubin is still steadily coming down and my eyes are not jaundice (yellow) anymore. Still a little ways to go until it reaches normal though.
Liver results have started to go back up to "my normal". Amazing how when I was sick they went down to the normal "normal" and then as I have gotten well they have gone back up to my disgustingly "high normal" but I feel a better with it up there...weird. Liver ultrasound shows no change and that my liver is just being my liver. So nothing to be worried about at the moment.
Ok, got to go.
Love Charisse
Thursday, September 6, 2007
New Template
Hi!! This is Teresa sneaking a little entry on Charisse's site;-) hehe...I'm doing her template and am adjusting this entry because she wanted it changed. So, hi Charisse! We miss you and are so glad you are home from the hospital. Feel better soon and know how special you are to everyone.
Love,
Teresa
Love,
Teresa
Wednesday, September 5, 2007
Alan's birthday/ My appointment
Hello People,
well today I had an apppointment with my specialist. I had bloods but will need to get the results on Friday. It is a private practice and hospital and I had some hiccups along the way today and got my bloods done too late...hehe.
I woke up this morning with a sore mouth and throat and looked into my mouth and there are white yucky stuff....oh dear...oral fungal infection. Doctor confirmed this and so I am taking acidophilus and Nilstat...anti fungal (which I was already on). However, the antibiotics I had with IV and oral have been so strong and my system weak so it was bound to happen. The infection is gone. There is just a little bit of fluid still on the lung and I am SO exhausted still! I hate this lack of energy. Today it made me feel so sick that I threw up my breakfast! That was horrible. And then I said, "Happy Birthday Alan" sometime after the event. I felt so bad throwing up on his birthday.
Anyway, so I wanted to tell you all that it is Alan's birthday today...the 5th September and he is 30 years old! It has been heaps hard on the family with the sickness and I wanted Alan to feel special....SO I was wondering if some people could send him a birthday message to his email.
This is his email:
alan@fanconi.org.au
So please leave him a message if you have the time. You are great with leaving messages for me and I thank you for that.
I also want to honour my brother, Shannon, who had FA and died in 1994, October. It was his birthday on the 1st September and if he was alive...he would have been 27 years old. I miss him heaps.
Thanks for checking up on me guys. I will update with results when I get them.
Love Charisse
Happy Birthday Alan!!!!!
well today I had an apppointment with my specialist. I had bloods but will need to get the results on Friday. It is a private practice and hospital and I had some hiccups along the way today and got my bloods done too late...hehe.
I woke up this morning with a sore mouth and throat and looked into my mouth and there are white yucky stuff....oh dear...oral fungal infection. Doctor confirmed this and so I am taking acidophilus and Nilstat...anti fungal (which I was already on). However, the antibiotics I had with IV and oral have been so strong and my system weak so it was bound to happen. The infection is gone. There is just a little bit of fluid still on the lung and I am SO exhausted still! I hate this lack of energy. Today it made me feel so sick that I threw up my breakfast! That was horrible. And then I said, "Happy Birthday Alan" sometime after the event. I felt so bad throwing up on his birthday.
Anyway, so I wanted to tell you all that it is Alan's birthday today...the 5th September and he is 30 years old! It has been heaps hard on the family with the sickness and I wanted Alan to feel special....SO I was wondering if some people could send him a birthday message to his email.
This is his email:
alan@fanconi.org.au
So please leave him a message if you have the time. You are great with leaving messages for me and I thank you for that.
I also want to honour my brother, Shannon, who had FA and died in 1994, October. It was his birthday on the 1st September and if he was alive...he would have been 27 years old. I miss him heaps.
Thanks for checking up on me guys. I will update with results when I get them.
Love Charisse
Happy Birthday Alan!!!!!
Monday, September 3, 2007
Home a Couple of Days
Hello People,
I appreciate all who are showing support. I have been quite lonely and feeling quite upset. I can't wait until I am well again. I honestly have never felt this unwell before. I mean...may be when I was 17 and had kidney failure from an allergy to quinine and that made my counts drop to hardly anything.....BUT....since then, I don't remember ever being so unwell and so tired and exhausted. Having a shower makes me puffed and today I felt like I was going to throw up after getting out of bed. I ended up sleeping until 11am this morning...was exhausted from the shower and slept from 2pm til 5pm this afternoon. I am SO tired and feel awful all the time and I hate it. I felt teary and cried today because I would love to go out and visit friends but I feel sick in the car and I feel lonely. I honestly feel like no one understands how I feel...I know they probably do but I hate this. How many weeks am I going to be recovering. It is frustrating that this is something caused by sickness and not an elective surgery. I have to tell myself this is only the first week of recovery and that my house is bigger than my hospital room and I didn't have my son, Isaac, around while in hospital so I rested more and here I have him around and he is constantly active even though I am trying to do nothing. Alan is home with me but it is just more active being at home than hospital. I know it is important because it will make me stronger. I need the exercise...it is not even real exercise. I can't believe how pneumonia does this to you. I have only 3 more days left of the oral antibiotics. The infection should be gone. The fluid may take a little longer to go and the energy levels will take longer to come up. On Wednesday I have an appointment with my specialist at the hospital to do my counts and have a check up and all that. I hope my counts have come up higher. It scared me to have only 20 000 platelets. I have never been that low. Oh...except for when I had kidney failure when I was 17...they were knocked out from 150 000 to 11 000 and I had to have transufion. Now I am a proper adult and fully understand what is going on! My platelets had come up to 39 000 just when I left hospital so I hope they are higher again this week. It would be nice to see it recover. My Haemaglobin is usually at 14 (or 140) and dropped to 9.5 (95) while I was in hospital. I have never been there before either. My count came up to 9.8 (98) the day I left hospital so I really hope it is up a bit more this week but I know that haemaglobin can take forever to recover. What is weird is that my liver results that have always been high with enzymes were knocked down when I had pneumonia but the bilirubin was put up and I was jaundice. This is really weird that my counts went down towards normal. Guess what..the doctors do not understand but as I recover my liver counts are back up to where they usually are and the bilirubin coming down, reducing jaundice. It is like my normal counts for liver are just high and when I get sick they reduce to normal and when I am well they go back up where they have been for years and I feel more well. Doctors are amazed how strange that it.
Anyway, I really should go. My back is sore from the computer. Oh Isaac was back at preschool today which was good for him. He only goes until 1130am but it was good for him to be around children again even though he felt upset about it this morning. Alan stayed with him for a while to make sure he fitted in again and we made sure he knew mummy would be home when he got home. That made all the difference.
I will update soon again.
Love Charisse
I appreciate all who are showing support. I have been quite lonely and feeling quite upset. I can't wait until I am well again. I honestly have never felt this unwell before. I mean...may be when I was 17 and had kidney failure from an allergy to quinine and that made my counts drop to hardly anything.....BUT....since then, I don't remember ever being so unwell and so tired and exhausted. Having a shower makes me puffed and today I felt like I was going to throw up after getting out of bed. I ended up sleeping until 11am this morning...was exhausted from the shower and slept from 2pm til 5pm this afternoon. I am SO tired and feel awful all the time and I hate it. I felt teary and cried today because I would love to go out and visit friends but I feel sick in the car and I feel lonely. I honestly feel like no one understands how I feel...I know they probably do but I hate this. How many weeks am I going to be recovering. It is frustrating that this is something caused by sickness and not an elective surgery. I have to tell myself this is only the first week of recovery and that my house is bigger than my hospital room and I didn't have my son, Isaac, around while in hospital so I rested more and here I have him around and he is constantly active even though I am trying to do nothing. Alan is home with me but it is just more active being at home than hospital. I know it is important because it will make me stronger. I need the exercise...it is not even real exercise. I can't believe how pneumonia does this to you. I have only 3 more days left of the oral antibiotics. The infection should be gone. The fluid may take a little longer to go and the energy levels will take longer to come up. On Wednesday I have an appointment with my specialist at the hospital to do my counts and have a check up and all that. I hope my counts have come up higher. It scared me to have only 20 000 platelets. I have never been that low. Oh...except for when I had kidney failure when I was 17...they were knocked out from 150 000 to 11 000 and I had to have transufion. Now I am a proper adult and fully understand what is going on! My platelets had come up to 39 000 just when I left hospital so I hope they are higher again this week. It would be nice to see it recover. My Haemaglobin is usually at 14 (or 140) and dropped to 9.5 (95) while I was in hospital. I have never been there before either. My count came up to 9.8 (98) the day I left hospital so I really hope it is up a bit more this week but I know that haemaglobin can take forever to recover. What is weird is that my liver results that have always been high with enzymes were knocked down when I had pneumonia but the bilirubin was put up and I was jaundice. This is really weird that my counts went down towards normal. Guess what..the doctors do not understand but as I recover my liver counts are back up to where they usually are and the bilirubin coming down, reducing jaundice. It is like my normal counts for liver are just high and when I get sick they reduce to normal and when I am well they go back up where they have been for years and I feel more well. Doctors are amazed how strange that it.
Anyway, I really should go. My back is sore from the computer. Oh Isaac was back at preschool today which was good for him. He only goes until 1130am but it was good for him to be around children again even though he felt upset about it this morning. Alan stayed with him for a while to make sure he fitted in again and we made sure he knew mummy would be home when he got home. That made all the difference.
I will update soon again.
Love Charisse
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