Re: body betrayal? [1 Attachment]

[Guest guest]

We do understand. I remember the other Connie. When I look in the mirror now I don't see her anymore; and there is nothing I can or could do that will bring her back; the damage is too extensive. I have finally come to terms with who I am now, it was that or continue to mourn the loss of the way the first connie looked. Don't get me wrong, I measure the worth of a person by what is inside of them, but I am not as kind to my ownself. I am my own worse critic. But you know what, the most important people in my life still see the real me. My family, my children, and my oh so awesome grands, still love me just like I am. God is good, all the time, and I still know how to smile. connie

To: Neurosarcoidosis Sent: Fri, April 1, 2011 6:17:30 PMSubject: Re: body betrayal? [1 Attachment]

Just wanted to share what I looked like after year one of this disease. I hate to look in the mirror and see what I look like today. I know some of it is age (this picture was taken fourteen years ago), but since I didn't change sizes from age 13 to age 36, and my mom and my sister are thin, I think I would have stayed that way if not for all the meds.

Like Rose, though, I do stop myself every time I am having a pity party and count my blessings. I have so much to be thankful for. My ankle is healing, my husband has been nice to me lately (it's spring break and he is a teacher), and both of my kids appear to be happy these days. All that on top of living like a queen compared to the rest of the world -- I make myself feel better just thinking about it. Still, it would be nice to feel a little better, have more energy, and get out of the house more. I just miss my life pre-illness.

Guess I slipped into a little pity party anyway. (Sorry.) I just hope I remember to log back on at ten so I can chat to a few people who know what it's like to deal with all of this. If I forget again, kick me in the virtual pants!

To: Neurosarcoidosis Sent: Thu, March 31, 2011 2:40:06 PMSubject: Re: body betrayal?

, I want to add, the angry, frustration, is partly from the Pred. and when you get off that, it does get better. I remember blowing up, and my husband or kids would say, I know it's the meds, or they would say Mom go take a nap:) People are too quick to judge, I know I use to a heck of a lot more then I do now. I try not to judge now, but hey I'm not perfect. feel free to rant and rave anytime you like, usually when Rose is feeling better she will score your rant, it's funny. Take care and be easy on yourself, don't worry about the other people, no one knows what your going through, but we do:) Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb



You are just at the point that all of has been and will be again.]

I know all too well what you are saying. The one thing I worry is losing my independence. I drive but the other day my foot spazzemed and I ran over a handicapped sign. (go figure) I didn't do any damage but felt like a complete idiot. No foul I guess.

I used to be a biker grandma and took the grandkids on my motorcycle all the time. I had to sell it. My children and grands understand and after about 3 years of this monster they have come to the realization that I am who I am and not what I used to be. Hang in there.

Every one of us understand the frustration you are going through. I wish I could say it gets better but it does get to where you can deal with it. Family and friends, well it takes a bit longer. They really don't understand. How could they I don't understand either.

You come her anytime to vent. We have all done that. And like it or not we all understand.

I for one am glad I have this wonderful family to come to who does understand. I pray a thankful prayer every single day.

Like I said Hang in there and vent all you want.

God Bless you

Jackie

body betrayal?To: neurosarcoidosis Date: Friday, March 25, 2011, 4:59 AM

Boy, after I got home from Indianapolis, I took a percocet, got in bed with my warm rice sox & heating pad all tucked along my leg, & slept for 5 hours! Between that 6-hour excursion to the sarc doc & my cold, I was wiped out. My leg pain is better, at least while sitting or lying down. Still can't stand for more than a few minutes without the severe cramping in my hip & down my leg, but it's a big improvement over last week! I have an appt with a surgeon in two weeks to see if there are any possible surgical options. Meanwhile I'm trying to go about my business as usual. One thing I hate about situations like this is that now I feel like I have to be on guard all the time & very careful how I move. When that awful leg pain started 2 weeks ago I had just turned to my left. We don't know if that triggered it, or it was just a coincidence, but now I don't trust my body.

I worry that just the wrong move will start it up again. The sarc has been bad enough; before that I had a lot of confidence in my body. I had already been having back problems for many years, but nothing I couldn't handle or work around. Then the sarc monster had to butt into my life & force me to stop, decrease or modify so many of my activities. But I made adjustments (with much bitching & complaining) & learned my "new norm." Well, several new norms as more symptoms popped up. But for several years things had been pretty stable. Then this happened & now I catch myself creeping around like an old lady, afraid to make a wrong move. I can barely remember how it felt to be carefree in physical activities; just enjoying myself & assuming that all my body parts would do what they were supposed to do! It almost feels like a betrayal; that sounds a little strong, but I can't think of

a better description. On the other hand, my body could make a good case for being betrayed by me--years of poor nutrition, neglect, erratic exercise, etc. Maybe it's payback! Anyway, I know that fear & overprotection can actually cause injury, so I'm trying to do my mindfulness meditation & consciously relax when I catch myself guarding too much.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)