My response
Here are my responses – I just typed them below after each questions
I actually have the following questions: for GBS or CIDP?
1. Were you diagnosed with sleep apnea before your diagnosis? NO
2. Did you require a use of a c-pap machine? For how long? NO
3. Did you have any bouts of smelly flatulence (gas) during night-time or serious intestinal infections prior to early symptoms of GBS/CIDP that is memorable? YES – gall bladder and then IBS
4. Did you receive a vacination of any kind prior to symptoms? If yes, How long before onset of symptoms? YES – Flu
5. Are you a Veteran of any War or Conflict? Are you a family member of a Veteran who who served in the Gulf War? No
6. Do you have any immediate family member who suffers from CIDP, GBS, Rheumatoid Arthritis, MS, ALS, Lupus, or any other Auto Immune disorder? NO
7. Are you a nail biter? NO
8. Did you get an H1N1 in 1976? Yes
Please number your answers 1-7
Please write any explanation at the very bottom.
You can post your answers and/or email them to [email]ddlapan@yahoo.com[/email][/QUOTE]
My Response
Yesterday I broke down and had a little bit of a tear eposode. See I smoke and there was a patient in the bed next mine who had visitors and every time I entered the room they would quite loudly announce that it stunk and that the nurses should not allow people to smoke especially when there are sick people on oxegen. Of course the guy in the bed next to me was delirious and was not conscious most of the time and the last straw was when the nurses told me I could not even roll my smokes in my own room because the other patients were complaining about the smell. That was crap as no one in the room is capable of communicating period. I was upset as here I am unable to do half the things I used to be able to do and now I am being told I can’t do more and more things. They have already imposed a time limit on when I have to be back to go to bed which is at ten o’clock. I am 26 and I have to go to bed at 10. Once I am in bed I can’t get out till the nurses get me out as I have to be medi-lifted in and out of bed. More and more of my freedom is gone as I go along. Last night I was so upset it took me an hour and a half to calm down and even then I was still on the verge of tears. I guess that is what stress does when you bottle it up. Being in this hospital is stressing me out big time, I don’t have my normal coping mechanisms to use which have been painting or playing the piano. I miss being in the group home and having my freedom to come and go as I wished and to go to bed at a later time and to be able to smoke later. My sleeping pills are not working and I am not getting the sleep I need that could be contributing to this as well because the psychiatrists are fooling around with my medication and that could account for it as well.
As for having family advocate for me that is probably not going to happen as they live in Calgary and I live in Edmonton. I’ll be lucky if I see them any time soon. I plan on confronting the psychiatrist about the diagnosis as it is technically a psychiatric diagnosis and I will get to the bottom of it that way and hopefully I can get them to stop fooling around with my meds as I am definatly feeling the effects as my mood even today is not the greatest.
Hope everyone is doing OK. I know I’ll get out of this slump and be fine but I also know I need to let it out as well for my well being as if I don’t it will just pile up again and I can’t go through that again.
Sonja