The First Ninety Days

Three months ago something that I had been suspecting, but hoping for something else, happened.

It wasn't a shock or a surprise. I have Google. I know how to put symptoms into the search and come up with possible diagnoses. Multiple sclerosis came up way more often than anything else. I knew for weeks that it wasn't cancer or a tumor. I was fairly sure that is was MS, but after watching a few too many episodes of House I secretly hoped for something more exotic and curable. I knew. I just wouldn't or couldn't say it because it's not curable. I've never had anything before that couldn't be cured.

I don't deal well with this fact. I have an ongoing issue with having the will to live, and I won't lie to you... I often wish that I was terminal. After a couple of decades of involvement with the mental health systems, I know that there's a difference between not having the will to live and being suicidal. I am not suicidal. I just find life really difficult at the best of times, and now that it's the worst of times, I'm not sure what the point is.

However, three interesting things have happened over the past 90 days that have changed my world view from "Life is not worth living" to "Well, lets give this living thing a whirl."

Trust me... Vast. Improvement.

1) I made my first introductions to internet discussion groups about MS. I lasted about two weeks. I was inundated with emails from people who had great "research" findings that claimed that if I went on a gluten, ovo-lacto, legume, sugar, and meat free diet, had a colon cleanse, smoked pounds and pounds of organically grown marijuana, AND have the government investigate the viral loads of the drinking water, I would never suffer from another symptom of MS. I am to avoid every MS drug approved by the FDA because they're poison and I will die 30 years sooner. I am to transfer every marital asset into my name because Joe *is* going to leave me before the end of 2010. (99.999999999999% of ALL husbands leave within two years after diagnosis.)

It's like MS has it's own "Truther" movement.

Tin foil hats look terrible on me and dealing with people with levels of negativity that make ME look like Mary Poppins, so I bounced. I am fairly tolerant of other people's crazy, but I can't deal with conspiracy theorists. There was also a huge movement to get government to approve the use of low doses of pretty heavy-duty pain killers in the "treatment" of MS. I'm not sure how that works, but it's not my bag.


2) My doctor made a great case for a course of mitoxantrone while leaving the ultimate decision to me. I was sitting there in his office in January thinking, "If it's this bad after less than a year, how bad is it going to be if I do nothing." I'd read some about the other treatments and diets and changes and realized that I would probably get much worse until those things started working.

The first treatment went really, really badly until about two weeks later. One day, I just woke up feeling better. Then, quite at random, things started working again. Not all the time, but they would work. I had my second treatment a week ago and nothing bad happened. My improvements kept building and building until Tuesday of this week. I went to get a cinnamon bun from the corner store (about a half a block away) and I was halfway there when I realized that I was walking without a cane. Yesterday I did it again.

Last night I was walking normally. I don't walk normally all the time, but I'm up to about 80 or 90% of the time. When I stand up, I don't have to physically correct my stance to keep my balance. That happened every time I stood up yesterday and today.

This treatment is really working, and I can see measurable results that tell me that I am going to get better. Two or three months ago that wasn't obvious to me.

and finally,

3)This blog was found by Lisa Emrich and she was kind enough to add me to the MS Blogroll she runs.

This allowed me to access the real stories of real people who aren't devastated by this disease on a daily basis in a way that the online discussion groups just didn't. I'm no beacon of hope and will never advocate for the rectal use of sunshine, but it's just really, really good to see people who are just getting up and doing it.

As I was writing my previous entry, all of a sudden I had the lyrics of Matthew Good Band's Strange Days [You Tube] going through my head. Specifically the last verse.

We're done lying for a living
The strange days have come
and you're gone
You're gone

Either dead or dying
Either dead or trying
to go

Good morning
Don't cop out

And today that previous entry was featured in that Carnival of MS Bloggers #31. The Carnival is "a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis."

With that, I am going to rename the title of my blog.

Either dead or trying...