CHRONIC TONIC posts on Thursdays at 9 EST, it is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist).
Tonight's diarist is Ellinorianne.
It's been over two years now and part of me wishes I could say that I've made progress with my RA and Fibro, but it doesn't feel that way.
I volunteered to write tonight even though I knew I wouldn't have anything insightful to say because I've been quite frustrated with just how still I've been. Standing still is the perfect feeling to describe my state.
Even though it seems as though the toxic drugs my Doctor has given me to stop the effects of RA on my joints, my inflammation is down to normal levels, I still feel joint pains.
And no amount of medicine will teach me how to decrease the stress of being unemployed and diminish that feeling of hopelessness.
I still struggle with my weight although I have lost 15 pounds, but of course it seems to be creeping back up since I stopped going to my water aerobics classes regularly.
Let me tell you, I LOVE my water aerobics. I feel light, I feel like I can glide and the ease with which I can move in the water doesn't compare to anything that I can do on land. It's a miracle. But as you know, there is life that sometimes gets in the way. The reality of getting myself to a five o'clock aerobics class with a seven year old is pretty much impossible and the conflicts with my school schedule makes it even more challenging.
And then there is the pain. Trying to describe that to people is quite the challenge isn't it. For me it can feel like a toothache in my bones. Or sometimes it's that pulling and tearing burning in my muscles that makes sleep impossible.
My biggest complaint comes with the stress when my upper back muscles tighten up so much it makes my arms ache, my neck ache and goes up to the top of my head. I try to lay on my tennis ball to try to work out the knots, rolling over it try to work out the tiny bulging ribbons of muscle. It's the strangest feeling when you can feel them clicking, the ball and the knot meeting each other.
I can wake up in the morning and try to reach to turn the alarm clock off and find I can't lift my arm very high, it just stops. And then trying to get up.
You just get tired of being in pain. I find that I have days where I just want to be in bed and the overwhelming mess that comes with long term unemployment doesn't help one bit.
It's just been one thing after another, and with each passing emergency, with each passing scare, it feels like I won't be able to take another one.
The coming summer months have me most concerned due to the fact that my husband has had his summer classes cut in half. Half our income, gone.
As my husband and I walked the picket line for teachers who faced a ten percent pay cut we knew that he would face the same ten percent pay cut that would come in just two months. It's a brutal cut for us. The thought of not being able to pay our mortgage makes us both a bit ill. And we've gone to our mortgage company to try to get them to help us modify, refinance, you name it. Nope. As I keep saying, we don't qualify for hope. The right people don't own our loan, we aren't behind and our house is too far underwater (About $180,000).
What do you do?
Kona still hasn't had her surgery, we still have a house that continues to slowly crumble apart before us (latest issue, the soup dish in Char's bathroom just "fell" off the wall!). We have to rapaint the window trim, our lawn is dying, the backyard is still a plant lovers nightmare, car registrations coming due and then with all the things that went wrong so far this year...
Illness doesn't go away despite these issues and I've tried very hard to keep my chin up. I find that when I'm struggling the most I stay away from Chronic Tonic for fear of falling apart among those I know I can depend on the most. Isn't it ironic?
So, despite the two A's in my classes everything else seems to just be falling apart around me and I don't know what to do. I'm tired.
PLEASE SUPPORT CHRONIC TONIC MEMEBERS APPLYING FOR DEMOCRACY FOR AMERICA'S NETROOTS NATION SCHOLARSHIPS:
Ellinorianne
UnaSpenser
Please note in comments your interest in being a diarist
May 20: Alexandra Lynch
May 27: Diarist needed
June 3: Amaryliss
June 10: Diarist needed