How much better is realistic?

micheleb
0 Recommendations

I have been thinking, which is a feat in itself some days! LOL!! Just how good can we realistically expect to get?

I work for a local eye doctor and get to know a lot of our patients and in return, they get to know me. Many of them know I have been sick for a long while now and often ask me how I am feeling. I never know quite how to answer that. I mean gee, I am feeling MUCH better than I was but I think if a "normal" person felt like I do, they would probably be gripping up a storm!

It took almost 4 year to get the right dx for me. I had some REALLY low points during that time. Went through long periods of extreme pain on a daily basis along with all the other fun stuff this disease has to offer. Compared to my worst, I feel pretty darned good. The remicade is really helping and things are calming down a bit health wise.

I haven't had any uvietis in over 2 months, haven't needed any steroids in two months either. I would say 3-4 days a week, I can get by with just regular doses of extra stregnth tylenol and usually the other days, two vicodins are sufficient.

I am never pain free but after living in a state of extreme, constant pain, I will take what pain I have and not complain too loudly. I still have fatigue most days but again, its better than it was. My chest hurts most all the time but its usually not awful, still a bit short of breath. I can't do things like I used to, I have to limit how much I do and for how long but I guess I am learning to adapt.

Would I like to feel even better, CERTAINLY but is it really realistic? I don't want to waste energy focusing on the pain and stuff I still have as I think its better to focus on how to adjust to my new normal. How do we know if this is as good as it gets for us? I always have a little pocket of hope in the back of my mind that I will improve more but is that likely to happen? Do other people think this same sort of thing? Will I ever be able to clean ALL my house in one day or should I just be content with being able to clean a couple of rooms at a time?

4 replies

notes4me
  • By notes4me
  • Posted August 27, 2008 at 4:50 pm

I can relate. It has been so long now since I can say I really feel good!! I have "good days" where I can actually do some laundry or sweep. But then because of that, I am down for several "bad days". All I know is we have to keep the faith that some day there will be real answers. I have been battling this disease for years and for many I could act like I was okay. Not the case anymore. Maybe age. I hope you continue with your sense of humor. What can we do but laugh in the face of this monster sometimes?! take care

stopsarcoid

My husband and I think the same thing as you - is this as good as it gets?

Is there someone out there who feels back to "normal"?

Is there someone out there who has a happy story? A story that cultivates hope?

micheleb
  • By micheleb
  • Posted August 28, 2008 at 3:10 pm

Well, I think I jinxed myself!! Woke up this am to a nasty flare of uvieitis! My eyes have been particularly irritable, dry I thought, the last couple of days but I have been more tired so didn't think much of it. My eyes were almost swollen shut, I had to do several rounds of hot wash cloths just to get them open enough to get the stupid steroid drops in and my poor hubby was freaking out a bit. he kept saying they look really bad, do you need to go to the hospital? Uh yeah, like they would do anything, lol!

I have put about 4 drops into each eye today so far and I can finally open them all the way and they are only zombie red instead of fire engine! LOL!!

I think its from over doing it this past weekend. We just started a HUGE painting project at home. Hubby and I are repainting the front room, dinning room, three bedrooms, hall and bathroom. I've been exhausted and stressed and I think it weaken me enough to allow the eyes to flare. Now is not a good time for me to have to take it easy but I guess I have no choice! Grr! Can I have my life back PLEASE!

Yes, PLEASE, any and all happy stories welcome!!

Pat-y
  • By Pat-y
  • Posted August 28, 2008 at 4:48 pm

I think for those of us that find this site, it's because we fall into that chronic group. Sorry....but I'm here with you guys. Six months ago I would have told you a lovely story, when in the end the terrible sarc. monster had not been seen for 8 years. Problem was he was never really gone, I just didn't recognize him. I think the people who are in the 70% do go back to a normal life, but once the sarc. has come back 2 or 3 times, I don't know. I'm waiting and hoping. Pat-y

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