http://orthoinfo.aaos.org/topic.cfm?topic=a00198
About 4 years ago today, I was in full relapse with Dermatomyositis. I'd spent the previous 2 years struggling back from absolute weakness-- the inability to stand, wash, dress, leave a chair or the house without help, among other things. In those 2 years of healing I'd developed 'moon face' and a blood clot from the treatments, lost my income, social life and all casual friendships, and had amassed a pile of medical bills I couldn't pay.
Hubby-man & I moved to back my hometown of Buffalo NY, thinking I was finally in remission. I'd planned on getting a job or two and then gradually starting my own business. But I caught a cold somewhere on the way from Indianapolis to Buffalo that lasted a month, and in a few weeks, found myself unable to unpack the boxes and set up our new home properly. The second income we'd counted on, didn't happen-- I could barely walk a few feet, much less drive or get a job. My health insurance from hubby-man's job hadn't kicked in yet, either.
I was forced to apply for help and have myself declared disabled, at 43, so that we wouldn't become homeless. 4 years later, my progress towards health has been slower. I'm still not back to where I was when I moved, and even then, I had bad days of fatigue and other symptoms.
Now, at this moment, I've been taking steroids for the better part of 6 years. I'm in a pre-diabetic state from the meds, and my blood pressure, once excellent, ranges into hypertension any time I'm not extremely careful with my diet. I've been a semi-shut in for most of my forties. I still have a mountain of unpaid bills, and every month we struggle to meet our basic needs.
I know I will probably never be able to go back to my old plans. I know I will have to go through this horrible process again-- feeling better, putting my life together, and having it pulled away from me. That's what having Myositis has done for me, and I don't have anywhere near the worst case-- I'm luckier than many.
What I've done with Myositis is to take stock of my time, and learn how to spend it better. Some of it I spend helping families that need it. Some of it I spend writing: three novels and hundreds of songs so far... something I didn't have much time to do when I worked three jobs. That's what we do-- make the best of it.
Because having any form of Myositis puts you through the School of Hard Knocks. This is long, and I apologize. Yet I've left out so many things, so many losses. There's no words for the emotional, the mental pains that come with this yo-yo pattern of illness and false gains/temporary recovery. And there's no cure, yet.
Learn about it, please. Then we might have a chance at a cure. I appreciate you taking the time to read this.
Peace, Mari
I know what it is like to not have insurance and then to have health bills to pay. My heart goes out to you.
ReplyDeleteI had to have the state pay for my care through HCAP.