25 August 2009

In the beginning...

I set up this blog three years ago. This is my first post. I hate to rush into things.

There never seemed to be a real reason to start, you know? No major event or decision or transition significant enough to trigger my running off at the pencil, blathering about insignificant details of my insignificant life to all and sundry... until now. This is the story of my retirement from gainful employment, and whatever happens after that. Secondary progressive multiple sclerosis has finally kicked my sorry butt.

They say that if you drop a frog in hot water, it hops right out. But if you put it in cold water and gradually increase the temperature, the frog will stay in the water until it overheats and dies. I think that's what I was doing. I had my first MS symptoms in 1988. Over the next 14 years, I had two brief, minor episodes of optic neuritis. I was a poster child for the disease modifying drugs -- except that I wasn't taking any. In 2002, my hands went numb. In 2004, I started walking with a cane, then using a wheelchair, then a scooter, then a power chair. I gradually lost the use of my hands and arms. I couldn't walk, or stand, or use a pencil or a keyboard, or shuffle papers on my desk. But my symptoms progressed so gradually that there was never a point at which I could say "Yesterday I could work, but today I can't". And my employer bent over backwards to allow me to keep working. I worked from home, used voice recognition software, teleconferenced, whatever it took. It was a totally sedentary job at a network software company, for Chrissake. If I couldn't telecommute, who could? But even making every possible accommodation, I couldn't do it anymore. After a particularly interesting weekend, I finally convinced myself that I could no longer do my job. I'm done. This frog is boiled.

So. What next?

Well. Today I submit my Short Term Disability insurance claim form. Kind of like a warm-up for my SSDI application, and I really can't tell you how much I'm looking forward to doing that.

The adventure begins...


  1. I had to stop and make sure I wasn't reading my own blog...sounds just like my experience with job and MS. I LOVE how u phrased it: I too was a perfect poster child, that they will always have so many of by pure definition of MS, but took no drugs so...LOL Welcome to the SPMS Club. WE are few in blogdom. (And assumed to be just lazy, stubborn, etc., for not having been on (I was) or trying (I did) all the special MS therapies that keep so many bloggers walking/hiking/traveling, LOL. Hard not to burst their bubble. I've been where they are, I thought MY actions of healthy eating, exercise, attitude, were keeping me strong and MS would stay far away. hahahahaha NOT
    Glad to meet ya! Look forward to reading your long awaited blog.

  2. I'm so glad that you starting using your blog. Diane's right, there are not too many SPMSers in the blogging sphere. A few, but not many. Actually, I think that I could name more Primary Progressives than Secondary Progressives talking about it.

    I'm still RRMS, but we (neuro nurse practitioner and I) keep reluctantly moving where my "baseline" is. I've never had a complete remission from any relapse without any residual symptom.

    Hey, I would NEVER assume that those in the SPMS Club are lazy, stubborn, etc. - unless of course you are. LOL. And neither you nor Diane are!! So there.

    Anyways "hi"