FALL--ing apart

Marji, I am definately feeling similarly. I am really ill again, we tried upping imuran to 200mg but ended up starting cellcept instead 500mg with imuran 100mg and 20mg prednisone a day. I lost 4 1/2lbs and the ironic part is my rheumy was displeased- she said I lost it because I am ill and not because I am doing the right things. Thus she fears I lost muscle mass or other vital stuff instead of fluids or fat. She also made the comment that on prednisone at 20mg I shouldn't be losing any weight at all and that it is a sign of how bad things are.

Now if hubby gets sick he will have to sleep elsewhere cause I am immune suppressed. That is depressing. Alexander is due for his shots in a few weeks and I have to be really careful of diaper changes afterwards. I can't get my flu shot because I get pnemonia every time I get it- it seems to make me vulnerable to infection and my lungs gravitate toward pnemonia when they get infected.

I suggest getting potassium supplements ASAP low potassium can make you feel really bad and worse can kill you if too low or low too long. Also get your B12 and Vitamin D levels checked. Might also ask about folate levels. Believe me nurtitional issues can make you immune system 200 times worse and make you extremely sick. I did enough research that malnutrition terrifies me more than kidney disease and this is coming from someone who lost 2 family members to lupus related kidney disease.

Marji, I am sorry to hear you are feeling so unwell.  I hope that things improve for you and you get some healing relief. Please take it easy ok?

Connie

Sorry things are so rough right now for you, Marji - I pray they will calm down very soon, and you get the kind of help/input you need to sort it out in the meantime!
Hugs.
Lucy

Everybody,

Thanks for the kind replies. I'm just really going through it on this stupid isoniazid. The doc gave me more nystatin mouthwash--to swallow, zithromax, and flagyl--which I couldn't take because it causes neurological problems and cannot be taken with isoniazid. Secretly I'm cheering about the flagyl, I can't hardly get the pills down and they kill my intestinal flora, which is about a total mess now anyway. And all my cultures were negative, so there you go. 

Thanks so much for all your support and sorry I can't type long my wrists get really numb even with a support and I can't sit up that well now and my brain is not so good--hard to stay positive.  That's the worst part.

Sorry to be a complainer. Just a side effect. Like a grumpy old sickie.

Carol, I hope you are doing well, you sound better. I hope things are good out there and the weather all right. I'm not on a list now, I don't qualify, I have to get sicker. They are just seeing me because its likely I will be there unless they get the rest of my problems treated. I could suddenly get sick. I hope things are going well for you. Yeah, I'm chicken on the colon/endo, but will bring it up. Been having reflux too. I hope they figure this out. PSC seems logical in my case, but they say no, its all from severe endo and autoimmune cluster*.

Connie--If only! I try, but my hyperactive twenty year old son is all over the place these days and its a real good thing, but I just have to hide out once in a while. He's like a twenty year old fourteen year old sometimes! I catch him watching cartoons, but the worst part is I ended up watching them with him! about my mental level now.

Barb---gosh this falling apart mess is bad. It's never been so bad for me, except on interferon, which was horrible, like a torture experiment in which I never stopped screaming for about six months. I hope things are going good with you and that it's pretty up there. Are trees are dead looking or green, no pretty colors. And halloween is not widely celebrated, still hot sometimes, doesn't feel like fall much, except for the falling apart fall.

Hippi--I hope this snowball stops. I feel bad that I'm not myself and am so self absorbed and not feeling good and mentally like in a dream state half the time.  Do people pull out of these bouts with no damage or do we just sort of ebb and flow with the ups and downs of our immune system just getting worse? OR maybe just aging. Gosh, I sound so negative.

Redrose--I hope Alexander is doing well and letting you get some zzs. You are like super woman! I hope school is interesting and a nice break--I went when my kids were little and it was my sanctuary sometimes, even if I was falling asleep in the library. Thanks on the advice on the nutritional and being tested for those. My B12 is high! all the time! with no vitamins. It's odd. Like I don't metabolize it. I get headaches if I supplement with it. Right now the smoothies have the protein,vitamins, calcium, magnesium, potasssium, fiber, and I add probiotic yogurt and V8 tropical, which has more vits, so while it's not real tasty and a little bit of a sugar rush (I dilute with a lot of water) it's palatble. I still feel I'm missing something and I think it's the D vitamins out of whack, so I will ask when I get my next labs. I feel in the same boat as you, sort of going through bouts of immune system breakdown that seem to have long term effects. I have to get a flu shot, you reminded me. (((Thanks))) and Ihope they get things under control.

Lucy, thanks for the words of support. If only my brain worked well enough to figure stuff out right now. not so good. I hope you are okay and doing well.

Thanks so much. Your support means so so so much. The isoniazid is so strong an antibiotic I didn't get the respiratory thing (also had zithromax and nystatin too for other infections). My flora is a mess from it. Well. please remember I love everyone here and pray and wish the best for everyone and if I don't seem myself quite right and stay off the net as a result, please forgive. I feel a thin string to my sanity sometimes now, the neuro symptoms are hard to describe. But its common and I'm making it through and soon it will be over and I will look forward to much needed steroids!

Redrose--
I'm sorry. I don't think I could've gone having a little baby, esp. when you aren't getting sleep. I hope you can keep the door open on it, things may change in a year or two. I know its hard, there is so much bs now if something happens and my son had to drop out and now he lost his financial aid and had to pay back some. It was crazy. Well, I'm rooting for you and just hope you get some peace, rest and fun time with your family and maybe some alone time for yourself.

I understand the adjustment thing so well. And its awful when its something you like, when you've given in before, and you've invested time and energy. I ended up in computers, I didn't even like computers. After six years of college, I did tech writing and found that I could be poor and bored tech writer or make real money in computers, which is what I did.

Now being disabled, I have time to write some fiction, though there are long times when I can't. I used to play flute and went to school for it and played since I was eight and can no longer play because of my neck. Lovely.

Try not to bum too much because things eventually work out in a way. And I took a lot of pride in my computer career because I was quite good at it and I got paid really well, which really makes life easier and more fun overall.

Will pray you get to have your cake and eat it too, that somehow you will get to do what you want yet it will be easy for you given your health, if anyone deserves it, you do.