Saturday, August 26, 2006 7:02 AM CDT
**Update on 5th September Tuesday**
Had my tongue surgery yesterday! It went well and I am home. I was going to be in overnight...but I didn't bleed much and came out fine. My face is burnt though. My face is red and burning today. I am allergic to tape and I know that I had tape on my face while being intubated...plus I am guessing the powerful lights that they used for me in surgery....burnt me...man...It is sore today...and I will watch that no real damage has been done. You know when people have surgery done their eyes have to be taped down so that the lights don't make you blind. That is true you know. I work as a nurse in this area...so I wouldn't be surprised if the lights had something to do with my face since they were working on my mouth!
My tongue looks good. It is nicely stiched up and not too sore. A little bruised and red...but looks rather cool. Not too swollen and I can talk ok.
I will update more later.
Love Charisse
***
Well, I had my IVIG yesterday and all went well. I had a broken sleep last night and today I slept til 2pm which is not unusual with the effects of the IVIG. Poor Alan was up most of the night...well awake with Isaac who decided to wake at 3.30am and not return back to sleep. Isaac has been pretty full on today and Alan is tired. It is nice that Isaac is back in bed and praying that he will sleep the whole night tonight as tomorrow is church...and we don't want a habit of this.
I have been on antibiotics for a nasty mouth ulcer just by the corner of my mouth on the left. It has been awful. I am very prone to mouth ulcers. This one is big and has pus (yuck) and definitely needed antibiotics. I sure hope it clears up quickly. I have had it for a week and started antibiotics on Tuesday night. I am having oral surgery in 8 days and really need it to be gone...otherwise it will not be pleasant.
Yes, I am having a white spot removed from my tongue on the 4th September. It is too small to biopsy and we have been watching it...although I have felt paranoid and so we decided to get it taken off completely because it is a quick and easy surgery. I will have a light general anaesthetic and they will do a panendoscopy as well...a look around while I am asleep in my sinuses...just surveillance...I have had no problems.
As for my haematologist who went to Canada...I really miss him. Already I miss him and last night I had a tear or two. I get quite emotional as a result of the IVIG. And knowing that he is not around to deal with anything made me feel lonely and a little scared. It is weird that he is gone. We will be trying to build a good relationship with this other guy that I mentioned in the last update. he also worked with my old doctor and they know each other well.
It is Alan's birthday on the 5th September. We are having a party for him on the 2nd of Sept before my surgery. Also, Father's Day on the 3rd. Happy Father's Day Alan!
God has been good to us since Alan went part time. God has been providing what we need. It has been amazing really.
We have a new car on the way subject to finance..it is a Toyota Camery....very nice car....I am so vague and can never remember the model and year....but it is a good year and a nice car. With petrol prices going up, it will be more fuel efficient than our Ford Falcon was. Praise the Lord!
I may be seeing a sleep doctor to help with my sleep patterns. Not getting enough sleep and rest has been affecting me.
Otherwise, life is good. Prayer meeting every Thursday. It is nice to be in the presence of the Lord. Tomorrow at church we have a well known Australian singer there....her name is Aliki. It will be enjoyable.
Well, that is enough for now. Bless you all and have a great weekend!
Love Charisse
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Monday, August 14, 2006 8:04 AM CDT
*New Update*
Saturday 19th August 8.28pm
Hi again. I am just putting a small update from the entry below. So many things have happened all at once this week. On Monday my nanny quit and we had been working together for 5 months and a little more...I cried...because I was attached to her. If you didn't realise already...I am the type of person who gets quite attached to things....even my own car. My car is a 1989 model...nothing too fancy...but I love it..the thought of getting a new car makes me cry. Yeah, I can be a bit emotional. You really have to laugh sometimes. Ayway, so on Thursday we had a new nanny who, if we are happy after trialing her for a few weeks, we can keep for a couple of months. She is sweet. She is young compared to my "old" nanny. And it felt strange waking up and seeing her in the morning instead of the other nanny. You have to get used to the new nanny's way of doing things and she has to get used to me...but I think it will work out. My old nanny rang and asked whether we could keep in touch..so that was nice.
Ah yes, my doctor....I have had tears this week and felt quite scared about a new doctor. On Wednesday I woke with so much emotional pressure in my head, I felt that I should write an email to my haematologist who has resigned to express what I am feeling inside. My Psychologist always tells me that when there is an abrupt "finish" to something that you are left unable to express your grief and feelings. I have done a lot of unexpressing in my lifetime and I was determined to not bottle all this up as well. She adviced me that if writing an email or letter is what I do best...then to do it. She has given me advice when this stuff happens. So I wrote my doctor a letter/email and sincerely expressed the feelings, worries and concerns and thanks that I did not get to say at my appointment because it was all very sudden...and I was speechless! It has felt a lot better to express those feelings. I made sure Alan went over the email to check that it was ok. He said it was extremely well written.
On Friday Alan met with the transplantor here in Adelaide. Of course, he can be a normal haematologist as well and my doctor had mentioned that his personality was one very much like my current doctor. I had been extremely scared of this new doctor...and it has not helped that I have only dealt with the issue of transplant when seeing him and "talking" to him....I put that in inverted comas because my anxiety stops me from saying a word and I just stare at him the whole appointment! However, we have been searching for the right haematologist/oncologist to cover my care...and Alan talked to him about it on Friday. Apparently he was really open to everything and very understanding to the fact that we did not know about our other doctor leaving til the day...and at the end of our appointment. This guy is actually very nice and has smiled at me and has kept his distance..tried to make me smile in appointments when we have approached him about transplant issues...however, I struggle with that topic and it is unbelievable about how I react......the anxiety completely debilitates me. May be if I see this guy just as a consultant haematologist I would settle in better. And I felt relieved to hear that this guy actually treats about 3 other FA patients....and he is an adult haematogist! These are adults. Don't panic. He gave no details...confidentiality laws...but we were able to tell him (should I say Alan)..we were able to tell him all about FA Australia and may be, after he gives our details to these people, just may be...I will get to meet other FA adults in Australia...in Adelaide. It makes me feel better to know he has experience with FA. Anyway, it is a good sign that I am excited because so far whenever I have seen this doctor I have not been able to speak and have been full of anxiety...and have stayed far away...no examinations. But, that is a norm for me. I don't let a doctor do something until I feel like I can trust them. If I really don't feel comfortable with this guy, I will find someone else...so we will see...I have to get the courage up to go and "talk" with him again about normal consults...not transplant.
Well, the excitement doesn't end there...our car died on Friday night. Alan's Ford that is. And now we have to look for a new car! I want to thank our friends (won't mention their names). Thank you for sincerely helping us out in this issue with the car. It is greatly appreciated.
Well, I meant to just do a quick update...but I always get carried away.
Keep praying for me. Sleep is a problem right now...I am not getting enough. I don't fall asleep well.
Otherwise, update soon.
Love Charisse
*************
Monday 14th August
Hello All,
tonight I feel annoyed and I think I just need to vent a bit....again.
It has taken me so long to build relationships with doctors in the past. I have anxiety issues so much with doctors. From things that have happened in the past....from doctors/haematologists who have not known enough about FA. I have had a history with things happening to me with doctors. A medical error just after my brother's transplant, caused his death only a month after his transplant. There is so much mistrust with doctors/haematologist that has happened in relation to me. Doctors have not respected me and crossed my private bondaries without consent and caused me to feel insecure, afraid and upset. Then, finally, I found a doctor...my haematologist...after Isaac was born and he is alsmost 4 years old. This doctor...I won't say his name....but he has understood my emotional/anxiety and depression. He has taught me more about FA than I ever knew under any other doctor I have been with. He respects my boundaries with my body and has never crossed any lines. He has stood up for me with other doctors and put rules in place to protect me dignity. He has helped me conquere some fears and led me to trust him enough to finally allow him to examine me. I have trusted him fully with my bone marrow tests and my blood tests and anything in regards to transplants. I have become very attached to my haematologist. He said that he was committed to seeing me through the tough times.
Well, I had an appointment with him today. At the end of the appointment he announced that he is leaving and going to work in Canada....and he will not be available from the end of this week! I can't believe it! He always said that doctors need to keep in mind that I have extreme depression and anxiety issues and that my care needs to be especially organised and now this. I understand that life can change just like that....but I deserve to know what will happen to my care now. I don't want to do this alone. He should be lining me up with someone properly so my care can be continued satisfactorly. He has some people in mind...but I have never met them. Do they know FA? I am in the middle of decisions as to whether to transplant or not.....procedures and so on that need a haematologisst/oncologist to oversee. I have such an in depth history with doctors and with fear of doctors....to change doctors and not know who to send blood counts to or manage my IVIG therapy or pre-transplant testing.....all of this and I now am expected to trust.........all of this makes me feel so tired. I am infruriated with my doctor for not giving me notice and for not arranging my care or helping me with doctors. In this medical world...there are certain rules that one needs to go by....as a nurse I become shocked and perplexed and cross when someone cuts things fine and does not respect a patient to the full extent. A doctor may be cannot become too attached to their patient. But a patient who has a long term diseases definitely becomes emotionally attached to their doctor. And this is hard to break. He has been the best. He is a great doctor...compassionate, caring, knowledgable....and pro-active in my issues and understanding with how my anxiety works and protective of how other people treated me. I am devastated.
Besides that my permanent nanny rang today and quit....not for any reason that we have wrong with us....but for her own personality issues....and this also devastated me. There are so many changes and I cope badly with change. I find it a struggle.
I have to admit to you all. I have been severely depressed before this happened and Alan has now decreased his hours at work to support me and help me through this. We were starting to look into transplant more....into reproductive procedures and into many things with this haematologist and I find it difficult to just start with a new doctor who will need to learn about my unbelievable fear and anxiety and not approach me and scare me...this is hard.
Sorry about being so glum. Well I must sign off. I have a lot on my mind. Please, people..pray for me. Life if tough at the moment. Depression is debiltating and I don't know...sometimes it feels too much.
Pray for the new doctor...whoever she or he may be...pray I get through this.
Love you all,
Charisse
