- This topic has 17 replies, 10 voices, and was last updated 16 years, 1 month ago by
.
-
Posts
-
Hey Klogan,
Where?d your whine go? I read it this morning and came back to respond and it?s gone. Unfortunately I understood your whine way to well. These diseases have the ability to invade every part of our lives. It sucks.
On a positive note, I had a ?mini-remission? last month which lasted about 4 days. The best part was I found myself forgetting that I had the disease. I?d walk down a set of steps and think ?hmmm, what?s wrong, that didn?t hurt?? I?m hoping its glimpse of the future, but for now I appear to be in the ?two steps back? phase.
Hang in there
ToddTodd – forgetting happens and it is blessed. A few months ago I pressed on a table and felt a long forgotten but instantly familiar pain in one finger. It wasn't much, but that particular pain used to be much worse, it used to be in every finger and it used to be every hour of every day. It had literally been over a year or maybe two since I had felt that particular stab in my hands. My memory of arthritic pain is fading. God bless Tom Brown.
Klogan – I understand the post and I understand why you deleted it. You should be turning the corner any time now. However from my not very scientific observations on this bulletin board I think the prednisone may slow your recovery down from here. Others may chime in to correct me. I think some people need the pred, but I think the price is that your final recovery takes longer. This gut feel is based on maybe at most a dozen patients before you so there is plenty of room to prove me wrong. If I were in your shoes I would stay the course for at least 12 months, and if nothing improves after that I would certainly try to wean from the prednisone. If I felt up to it I might try weaning from the pred now, but again, from those who have gone before you, you might be unhappy for a time while you wean off the pred. Hang in there. It gets better. It gets much better, but the improvement can be glacial.
Glacial? Slow and nearly imperceptible like the movement of a glacier.
Most of us who start AP find that our disease becomes more unstable, good days, bad days, good weeks and bad weeks. Now from hind sight I think that is herxing but it was impossible to know that at the time. So our symptoms yo-yo up and down in such a way that it obscures the gradual overall improvement. For 8 months I didn't think I was improving at all. But in my 8th month of AP I noticed one day that I was carrying 6 or 8 plastic grocery bags from car to house, each heavily laden with milk and such. I almost stopped in wonder. Before I started AP doing that would have killed my fingers. But sometime in the 8 months of AP I began unconsciously resuming activities that were too painful before. And yet, the improvement was so gradual that I was unaware of it. Cool yes? But glacial.
Thank you John… very well put and easy to understand too. Coincidently I am in my 8th month of AP and feel frustrated much of the time. I'll try to keep my eyes more attuned to “glacial” improvements. Right now I can't go for walks and can hardly stand on my feet for any length of time… just wiping down a counter or doing dishes is a challenge for me. I found a DO and have made an appt. since hearing on the board about Osteopathic Manipulation. I'm anxious to see what can be done through that avenue too.
Thanks again ….
Nan
Nan – I recall from Henry's book that women needed more time in general. I am sure that there is a strong hormonal influence on these rheumatic diseases. Marshall believes that it is via the 1,25 vitamin D seco-steroid pathway. In any case do hang in there. In 5 years the folk that pass through this bulletin board, with very few exceptions, do improve, and most improve remarkably. Once I became aware of my improvement it seemed to go faster. I was guardedly using the “remission” word by 14 months. I had further improvements when I started MP, another more aggressive AP, and many of these were seemingly unrelated to my rheumatoid arthritis. It has been some years now and I describe myself as 98% cured of RA.
edited for spelling
Frailty, thy name is woman.[font=”Verdana, Arial, Helvetica, sans-serif”]
I thought of that when I read what you said, John.:) [/font]Jenn
Hi Klogan,
Didn't get a chance to read your whine before it disappeared but I can certainly imagine most of it. I have been on AP for 8.5 mos. now and I am very frustrated and weary. It is so hard to hope and wait especially when some days seem like a step back instead of forward. You try all the self talk but some days( more than less lately) it just plain sucks. Then you start feeling guilty because you know there are people out there who don't even know nor will they ever, about AP. It's an ongoing battle within ourselves – physically, emotionally and mentally. Hang in there! Someday we too will have a testimonial to write and talk about.
Take Care!
Steph
Hang in there, Steph. You'll see, it'll pay huge dividens so you can start drafting your testimonial. :blush:
kim
Perhaps, Jenn, but I doubt anyone on this board would consider you frail!! So sorry you're ill right now and hope you have speedy recovery.
[/size]
Maybe Jenn, but I think the strongest women I know post on this board. My arthritis frightened me to my core but you and others here have dealt with much worse.
Ladies, you amaze me.
I second that, Nan. Thanks, John, for your tireless volunteering behind the scenes and your ever patient, kind, reassuring words on the BB, too. One would never guess now that you carried the kind of fear you say you did about your RA, but you're so right…the human mind is a funny thing and the memory of pain fades fast as we heal. It's such a blessing to us all that you chose to remain on the BB to support those of us who are at the beginning of our AP journey and those sometimes scary, early stages. You really are a dude! :dude:
God bless.
Peace, Maz
The topic ‘ Whine, whine, whine!’ is closed to new replies.