Friday, December 13, 2013

MS

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Well, here's an update on me - on my health.  I have not been well lately.  I have been wondering how a person tells others that something serious is wrong with them. I imagine lots of scenarios where it can come up in an easy manner - where I don't have to see pain and sadness in the faces of those I tell.  Where I don't have to hear people grasping at words, unable to respond...saying things that are not helpful and in many ways hurtful.  It never does.  It always seems jolting, unexpected, horrible.  Writing is easier.  It gives both parties time to think.  For me, it gives the issue an academic quality, and that eases the trouble of it. Pushes it back into the place where it is a thing, and not me. I try to speak about it from this perspective, too.  I step back.  I work around the parts of it that are painful, and stick to the facts.  Just the facts.

I had to do this sometime.  I had to tell people.  In an email conversation with some good friends from college recently, this came up.  They are wise - Melissa had it in her to ask some questions.  I asked if we could visit them.  It's been years since we've seen them.  I told her we'd be in Cleveland.  She asked why?  I told them I was seeing a specialist at the Cleveland Clinic now - the Mellen Center for Multiple Sclerosis.  She asked if she had missed this update.  Of course she hadn't.  I kept it to myself, mostly, limiting where it went.  The sad thing is that her husband, our friend Phil's mom had MS - he knows about it.  And here's what he said to me, regarding his mom, "I believe it was the army of those engaged in prayer along with her own sheer will that allowed her to be with me as long as she was."  How can you pray for me if you don't know?  So let's start there.

I had my first flair when I was pregnant with Daniel.  It was a 6th cranial nerve palsy, that left me with double vision for months.  But it got better.  Then, about a year later, I developed trigeminal neuralgia (a 5th cranial nerve issue).  That was earlier this year.  I saw my neurologist, and he did another set of MRI films.  This one showed more lesions than the one I had when pregnant with Daniel.  But he claimed it was not MS, at least not for sure.  So I waited.  I put hope in his uncertainty.  I had a bout of fatigue that was beyond anything I could have ever imagined.  My husband, however, pushed me for a second opinion.  That's how I ended up at the Cleveland Clinic - recently, actually.  The neurologist there looked me over.  She reviewed my MRI's.  She diagnosed me, right there, with Multiple Sclerosis.  She said it was not an ambiguous case.  It was clearly MS.  It was early MS, and my body is fighting it very hard and very well, but never the less, it's MS.  It's just not the thing you want to hear.  To be diagnosed with a disease that is chronic, debilitating, and, at this point, incurable.

So, the bad news.  I can't stop it.  The good news.  There is ongoing and substantial research being done right now that is moving the body of knowledge on this disease ahead in ways that would have been unimaginable just a few decades ago.  I started taking some medication about a month ago.  It's nasty, it's horrible, and I don't feel like I have a choice.  If left untreated, my prognosis is not good.  This drug may not help, but it's worth a try.  If it works, it will slow the progression of the disease.  I won't know if it's working for a while.  The best test is to see if new lesions form, and if new disabilities occur.

To dispel some things I've heard - I did not get this disease because of my family history.  I did not get it because I drank diet soda at some point containing aspartame.  I didn't get it because I eat gluten - fat - simple carbohydrates - chemicals on lettuce, etc.  It is, as best as is known now, a random occurrence.  Very few people have this - about 400,000 in the States.  But I'm one of them.  I don't feel especially lucky.

Here's what I do know.  God is good.  He is mighty, and he is sovereign.  I will be healed of this.  The question of course is not if, but when.  I don't keep this body forever.  I may have to wait until I die to be healed.  And if that is the will of God, so be it.  But my God is the great physician, as well.  I will serve him and I will praise him regardless of when he chooses to heal me.  If he decides to do it now, or next week, or next year, I gladly receive that blessing.  It will point back to him - to his greatness - and if it happens during this life, all people will see it and they will know that there is a God.

So - How can you help me?  You're thinking it, right?  At least many of you.  I've heard it many times.  Would you pray for me?  That's pretty easy.  :)


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