auto immune hepititus

[hatter]

i have been diagnosed with aih for over a year now. was chronic but is now stable. was wonderin how common breast cancer is with medication. am on azathioprine and prednisolone. was also wonderin how people with this cope with bad days. feel like i could smash house up. neva do but horrible feelin.

[cuteus]

OOPS! it seems I confused you with maamir! never mind about the brother, but all the rest stays!
be well

[cuteus]

I must have missed the post about you having AIH, since you mostly talk about your brother's status, just wanted to say that I wish you a complete stabilization of your AIH and your brother's cure from HCV.

hatter and ssm; I also wish for your AIH to be controlled and for it to have minimal influence in your daily life.  It seems your condition places you in a worse position than hep c would.
I hope you remain well

[SSM]

hi  Maari
I wonder if Lynn is still in her tent ??  haven't heard a word and i hope she's having a great time. my husband has relatives in N.Ireland and they recently told me it is kind of cold there now and a bit rainy. i hope it is nice where lynn is camping.
I didn't realize there was something called Nyquil liquicaps that have no alcohol. that's something good to know.
It;s funny that you said how organized the Dr. said you are as I had just been speaking with a daughter in florida and was telling her about you and Lynn. I said Maari is really organinzed and knows a lot about AIH!!  ha ! I can see where you would have to be with a daughter that is non verbal. it is good that you are able to do that. I TRY to be organized --- sometimes I am and sometimes I'm not !
I want to go to the web site you mentioned  labtestonline.org and check it out.  I try to get onto the uK site but it doesn't let me on.  and I also couldn't get on to the yahoo site that you mentioned.  I actually like this forum a lot. everyone seems so nice. I have spent the last hour reading about other peoples problems.
By the way --- I know little about computers so what exactly is " a thread"????   do you know?  this winter I might sign up for the computer club at the RV park we will be staying at. I think I need to.
I also keep a copy of my labs. also have a copy of my biopsy.( which I took out and read again a few days ago then wished I hadn't !!!! ) oh well --- it's good that I went to the Dr. when I did- just wish I had gone earlier.   actually I did go once and complained that  I was really tired. they always say the same thing --" well--- you are very busy -- you do a lot__ etc". now I know why I was so tired . I do have another problem which is scolocis . I have had to have facet shots before in my lower spine  but this time he gave me pain killers to take if I need them. lucky for me my back is not bad right now.. possibly the pred and Aza  are keeping it from hurting .
I better go to bed. I teach landscape painting and have a class tomorrow.  
have a great day tomorrow and I will do the same !!
shirl

[Maari]

Hi  I read your first post and thought how did you know about my brother-in-law.  I talked about him with Scott awhile ago, still have not convinced him to join yet. His HCV is back and he is dreading going thru treatment again.

Thanks for your kind thoughts and wishes.

Maari

[Maari]

Hi Shirl

I think you really have things covered as far as your trip goes.  It helps to have Dr's lined up in advance. I see the Gasto every 6 months now, same with labs every 6 months.  I get the lab orders ahead of time and get them done about 1 week before appointment. The first 6 month span between labs had me nervous, but I got over that. Over the years caring for a nonverbal child and having to answer questions about her to Drs has made me learn lots about how to talk with drs.  Many have admited I know more about her then they do.  Now when I take her in and say I think she has pneumonis, they check and say you're right. The Liver specialist at the U of Chicago said I was the most organized patient he's seen. I do like knowledge.

I do get tired sometimes, not as much as before.  I seem to have a finite amount of energy and if I do some strenuous activity I hit a wall. But most days I make it without needing a nap. I sleep well now, while on pred my sleep was not always good. I broke a rib while on pred, the er doc gave my Loratab(did not need all of them) so on those bad night I'd take 1/2 a pill and sleep soundly. With the no alcohol, not even cough syrup order, I found that NyQuill liquicaps have no alcohol in them and also work on those bad nights. I take a nap if I need it now and don't feel guilty about it.

Hope the poditrist can help with your foot pain. Walking lopsided can make other parts hurt.

We also used to use a popup camper, it was fun.

Take care

M

[SSM]

thanks for the encouragement.
it sounds like you see  your Dr. every month?  i haven't seen mine since feb.  but I go every month for the labs and  the nurse lets me know what to do. i did make an appt for the end of Oct. before we leave. I have a few questions for him and want to talk to him personally before i head out. He is a really nice person and said he will work with me on this.  also if i do get into a major problem there are a couple of things i can do.  one is fly home.  and the other is see a Dr. ( gasto/hepatologist  ) that two of my daughters work for in florida.  he will be very near-by and already has said he will take me as a ptient if i need him to .  he also is very well respected in the medical field so i feel o.k about it. I don't think i will have any bad reactions since i have already been on azathioprine for some time. hopefully i will be off pred by then.
how about tired ?? do you get really tired? I do by 1:00 --- I usually start out o.k but by 1:00 i start lagging. of course i don't sleep very well anyway so that doesn't help.here it is going on to 11:00 and i'm not in bed yet !



You sound very knowledgeable about AIH. i try to read up about it and ask a lot of questions. I too, feel it is best to know all that you can.  I also quite often don;'t even feel as if I have anything wrong. if it weren't for my hurting foot i would feel almost great.  I have to try to figure that one out. I plan to stop at the poditrists tomorrow and get a medical shoe for my left foot ( that doesn't hurt) to match the one he gave me for my right foot. right now I have one shoe on and one medical shoe and walk lop sided. up down   up  down.  so that should help and I imagine i will wear the shoe more often.  
I read the forums all the time and find so many pepople that are suffering more than me-- I have always had a good attidude about it. what can you do anyway ?? wailing about it won't help--- if It did I would wail but i know better. it would make me feel worse. I am like you --- i find some thing comfy to wear and a hot cup of tea and read a good book !
take care and enjoy tomorrow ---
I think of lynn camping under the trees-- we used to have a tent trailer and it was wicked fun.
prayers for all of us!
shirl