| Gaynor, Gloria - I... |
Yeah, OK...I'm feeling a bit cocky (note the little chicken dancing in the esnips box up there!) these days. I've been off all DMD medications since December 5th (my last dose of Tysabri), and I have to admit, I've been feeling pretty darned good.
More and more each day, I'm beginning to believe I WILL survive...with or without disease-modifying therapies...I AM surviving. AND, I'm actually ENJOYING living without the constant schedule of drugs/IV's/shots, etc. I KNOW!!! Scary to admit, but I'm a tad bit JOYFUL these days. LOL
Now, don't get me wrong here. I DO NOT recommend nor do I believe MY personal treatment decision is or would ever be the right one for anyone else. Frankly, there remains a tiny voice lurking in my head saying, "Enjoy it now, smarty pants...I'll get you, my pretty. And your little dog (cat), too!!" If ONLY MS would take my cat...but I digress (again)...sigh.
But, I'm also not going to sit around feeling guilty OR in suspense wondering when the next MS shoe will drop, crushing my brain into mush. For now, I'm just riding the wave...enjoying the view. I will survive. I'm not letting anything bum my voyage at the moment...
What's that saying... Ignorance is Bliss? It is. I know. I did no DMD steadily for 4 years and in the end MS did get me and my legs too. However, I completely understand your need for a break and just living a blissful existence. Enjoy!
ReplyDeleteMS got me, badly, right from the getgo. Then with the help of a few short courses of prednisone, and some swimming and a lot of walking, I managed to park that wheelchair for 16 years or so. At this point, 27 years in, I use one crutch inside, and a walker away from home. A wheelchair for distances.
ReplyDeletePersonally, I think Avonex triggered the rejuvenation of relapses that caused this. That's when things took their turn for me. Just sayin' - FWIW.
I say "enjoy yourself"--there don't seem to be any rules with this MS stuff anyway...glad you are feeling well....
ReplyDeleteWorry can be the very worst "ailment." Emboldened by purpose works much better :-). You have great spirit.
ReplyDelete~Mary
I'll be doing the Hustle to that Gloria Gaynor song all day now, thanks!
ReplyDeleteIsn't it amazing to feel GOOD??? When normal is never normal, normal people just can't understand.
Enjoy! You deserve a little MS happiness.
So come do the Hustle, unless you're more into the Jerk or the Swim or...
no matter. Do your own happy dance. :D
(hugs)
Jeri
I was off of my drugs for about 2 weeks in december. And it was sweet! No lumps, bumps and bruises from shots, and I felt GOOOOD! I keep thinking, enough is enough, no more, but then I get scared and keep shooting myself up. I'm a chicken s**t!
ReplyDeleteMy uncle has had MS for about 30 years. No meds other than steroids if he needs them. He's doing OK, still walks, although looks drunken-like.
I guess you never really know.
Well for you Linda it seemed that the Tysabri really wasn't slowing or stopping anything and it was a huge headache for you.
ReplyDeleteEnjoy and I sure hope it doesn't catch up with you.
MS is all about enjoying the (healthy) moment! Enjoy and think positively.
ReplyDeletedamn, don't worry, just enjoy~!! i'm so happy to read this! you can't waste any of the good days worrying about "but what if...". do what feels right for you!
ReplyDeleteHey...doing the happy dance for you!! I can totally relate to the joys of NO DMDs...don't let the dark side drag you down!!
ReplyDeleteYou deserve to be feeling like you are right now, enjoy it!
ReplyDeleteGo for it. Maybe the cause of MS is DMD drugs, LOL.
ReplyDelete