Wednesday, September 21, 2011


I have to post a special column, today. After you read it, you might be wondering What is she talking about? Please follow this link:

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

1 comment:

  1. I know what it is like to not have insurance and then to have health bills to pay. My heart goes out to you.

    I had to have the state pay for my care through HCAP.