Hi all
I recently read an article on autoimmune diseases and it said they are the cruelest of illnesses because of the nature of their destruction... I beg to differ, I think the cruelty lies in the deception created by these ungodly illnesses! I finally learned the difference between flare and remission... for two glorious weeks, I had no pain, slept great, wasnt as fatigued, I mean life was good and for a moment I forgot I was sick.... then BAM, out of nowhere, it all starts again! That my friends is cruelty!
I will have to totally agree with you. With me it's the neuro part of things. One day I'll wake up and be able to walk around like a normal person, then BLAM! the next day I can't even pick up my foot to put it in a slipper without holding on with both hands.
I pray every night for just one whole day without having to fall all over the place trying to do everyday chores. Sometimes I can joke around it, but some days it is just to much handle.
Hang in there, with the proper meds and courage, you will have more good days.
Hugs, Pooh
Poochie,, I too have prayed hard for just one day of a remission,, I guess God must be listening to the peole in Chile and Haiti more at the moment
Hi Peachpop,
Yeah, you have a good point on the cruelty of AI's, I just wish they would stop the train and let me off. And like Pooh mentioned, I too wish you lots more of the good patches.
Take care of yourself, okay?
Patze
I'll have a good day from now and again and of course I'll overdo it on that day and then have to pay the price the following days to recover. Will I ever learn.
With me, my SJS seems to be affecting me internally mostly. Not sure if that is good or bad but it is what it is.
Don't get me wrong - being monitored is nice so they catch things early.
My cruelty has been either 1)drs scratching their heads about things and leaving me in limbo and 2) wondering what they will find next. I've gotten a lot better emotionally with it but durn you hate "using the old 3-Stooges analogy" waiting for that cream pie hanging from the ceiling to hit you in the face.
Hey Pisces, same here....always seem to be waiting for the other shoe to drop, ugh. (http://www.freesmileys.org/smileys/smiley-sad055.gif) (http://www.freesmileys.org/smileys.php)
Patze
When you guys say that you will have to pay the next day for over doing it, what are the symptoms that you have the next day?
Hi Epson,
Let's see, the more I do when I feel good, the more the exhaustion level and pain increases (feels like ten fold worse than normal), and the old thinking gets even fuzzier (didn't think that it was possible, but it is....).
It can get really awful Epson, but about yours? Do you get the "oh my, what the heck was I thinking" hurt the next day?
Patze
Epson, instead of just making a face at the owie from getting up from, oh, anywhere, i feel so exhausted and unable to move after overdoing it that i wish i had 1000 little fairy godmothers to pick me up and transport me into another body.
;D >:( :'(
I had a really good period of remission from 1990 to 1993 or so. My life was pretty normal at that time. But when the RA came back it was with a vengeance. It has been pretty bad until lately. In December I signed up for a drug study from my Rheumy, and it has really made a difference in my energy levels most days, I feel more like myself. I even started spring cleaning, washing woodwork and cleaning out cupboards, ETC. The drug is Actermra (toclizumab) and has been approved by the FDA on January 8th, so it may soon be available to everyone. I have not had any bad side effects from it, (touch wood) Hope I didn't just jinx myself.
I do notice that a week before I get the infusion I get a day or two where I am really exhausted. But then I get better again. I have my next infusion on March 8th.
My body can track the storms coming up the coast. I hate Nor-easters and I hope we are done with them for awhile.
Jules
Just when you think you get use to dealing with one issue another pops up. My newest trick is staying up right and not swaying in the wind when standing in one spot. I can't guarantee like the toy -weebles will wabble but won't fall down. My mind is always set on trying to create a tripod effect - feet slightly spread and a hand resting on something. Funny how my mind is always looking for ways to stay stable. Still the majority of my bloodwork still comes in at the normal range and little cause for all the problems. I have come to expect we do not have an answer for you.
With all of this I have learned to cope. The hardest irony to accept is my 29 year old son with autoimmune symptoms that they cannot diagnose. That is the cruelest to me.
For me it is an unexplainable exhaustion that the doctors don't seem to comprehend and pain in most of my joints and tendens. I also feel like I'm trying to get over a bad bout of the flue, even though it's been more then 25 years since I have had the flue.
I think it's like giving a child a bag full of the best toys and then taking them all away after 5 minutes - oooh the unfairness of it all!!
I've been struggling day to day for the last few weeks, not full blown flare, but definitely biting at my heels. On Saturday I did some shopping, had lunch out then went to a 50th birthday party at night, and guess where I spent most of yesterday - yep in my bed. Today is my day off so had a lie in, a leisurely breakfast and am just about to muster up the energy to get in the shower, hate it when I'm like this, makes me feel so worthless and useless.
Even told my poor hubby to divorce me last week as it's bad enough for me living with it without inflicting the effects on him. Thank goodness he understands and didn't take me up on the offer!!!!
Wen x
Hi Wen,
I hope that you feel better soon lady! Oh, you have a great hubby too, but you already know that! :)
Patze
I was told that when going through radiation, it would supress my immune system and make the SJS better for a time. BZZZZZTTTTTT!
I have another of my stress thingys. My left hip feels like it's been burned, but there's nothing there. It started on the left leg, but has traveled north a little. My joints are achier than usual and w/out exercise this time.
Gotta love it! :D :D :D
Epson, You asked what does it mean to have to pay later? If I overdo it I know I'm in the bed for the next day or two! I seem to spend most of my time in bed. I get off work and walk straight for a place to rest, have been known to pass out where ever I stop!
I am so very tired of sleeping my life away, then it's Lord, please let me get just a few hours of sleep all the while my body is wrecked wtih pains there seems to be to all time favorite areas, but it seems other prop up on a regular.