Sunday, February 16, 2014

21 years

February 11 has come and gone, but I did go through that day thinking of how it was the day I was diagnosed with MS, after 3 years of tests, and really, 3 years of me wondering if my mind was playing tricks on me.  Maybe nothing was really wrong.  But when I found out, someone said to me, "isn't it good, in a way, to know what is wrong?"  Yes.  I wasn't making things up.

Then the years passed, each one, for about 17 years, filled with times when MS would flare, walking would become more difficult, and I would go on steroids.  Then I would get better, but I would never reach the point from before the relapse.  I was one of the very first people on Betaseron.  Then it didn't seem to be working, so I was one of the first people on Copaxone.  It helped slow down MS in some ways.  5 years after being on it I had an allergic reaction, couldn't breathe, sat for hours shaking, and decided to stop that.  Looking back, stopping that really caused MS attacks to increase in frequency.  Sometimes I would get them every three months.  So then I tried Avonex and Rebif for "fun."  Each are shots I got to give myself and were accompanied by other not so fun symptoms...

But then came my daughter, so the drug "experimentation" finally stopped, and I decided that besides Copaxone, nothing worked.

And then came Ampyra, right when I thought nothing else would help.  And it's not supposed to help.  But it has.  The every 4-6 month attacks have been gone for 3.5 years.  I am walking, much more than ever.  It's not supposed to work this well.  But there are miracles that make no sense and so the best thing to do is just go with them and thank God for being with me through all the bad, good, and uncertain times.

What is hard these days is that in my environment, people don't know where I've been.  My walking doesn't look like a real walk, but it keeps getting better.  People who have not known me or have not seen me for a long time just do not know this, and so I can get comments from people assuming I am always getting worse, or people assume I get up to walk just to stretch, just because...Sometimes I want to scream to tell people of my long journey, because especially lately, in new environments, the "baseline" of Beth is where I am today; not 4 years ago, which was a very low point.  People can seem to assume that I am just walking to walk, so they try to have a conversation with me. One person thinks I am stretching and taking a break, and has tried to make their own break include using a yo yo, and doing that while I am walking.

I guess the point of this post is to summarize where I have been...  Very low points, coupled with getting gradually better, and learning to walk again, as high points, and some of the reactions of people along the way.  If you see someone who looks like walking is very difficult, well, it may be that the person is actually happy to walk, and it could be that the strained walking is an improvement.

Smile.  Life is good.  Push the boundaries.  Break all the rules.  Never give up.  Ever.

Thanks be to God.


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