This is a rant

I am taking time away from my life stories because I am sorely in need of some rant time.  I have talked before about what a lovely place denial can be.  For many year's I could almost pretend that MS had a very limited role in my life.  Occasional exacerbation and some mild hearing loss were just small bumps Annoying, yes, but severely problematic? Not so much.  Then problems began to be more of an actual issue a little at a time.  MS is a progressive disease, and it certainly has progressed.

 My handwriting, never really all that legible, became undecipherable, even to myself.  (Why are ipps on my grocery list?  Oh.  Eggs...)  I used to like to go on long walks around the neighborhood.  When Eli was an infant, I must have pushed him hundreds of miles in his stroller.  Then, one day, I walked several blocks by myself, and realized that I couldn't continue without resting.  Even after a ten minute break, I was limping and unable to stand upright by the time I got home.  I still didn't need a cane, but any walking I did was significantly curtailed.

I also remember the time I tried to run.  My sister was in town, and we were playing outside with our sons.  I tried to run to catch up with them, and realized that my legs were totally unable to respond to my request to move faster.  I think I may have even fallen.  I was laughing at how funny I must have looked, but it was an unnerving moment of realization that there was another thing I would never do again,  I was about 38 years old.

So my abilities have become fewer and fewer over the course of the past 20 years.  I continue to find denial a lovely place, but I have moved into the fourth level- I know I have MS. I know I am always going to have MS.  It has a significant impact on my life, but  I don't have any feelings about it.  I pop out of denial when I am tired or frustrated or angry and do the emotional work that is part of grief.  I grieve anew every time another ability to lost or another dream dies.

I think people dealing with MS or any chronic disease has enough crap to deal with every day.  I struggle to get in and out of the car.  I struggle to type this. I watched West Side Story on tv and wept.    I remember being able to sing those songs and hit those high notes.  Age is a culprit in taking my range, but MS took the muscles of my vocal cords.  I miss being able to sing.  And, my least favorite struggle, it trying to get to the bathroom on time.

I realize the incontinence is not uncommon in MS and is or even uncommon in the general population.  I have come to terms with finding the right incontinence pads and the neurologist has prescribed medication,to curtail the worst of it.  However, I still find myself with mortifying spots and having to change clothes in order to keep away offensive smells.

So now comes the real rant.  I am taking 20 mg of something called Oxybutinin.  I am supposed to take one in the morning and one in the evening.  I have discovered that, if I take them both in the morning, I can keep leakage to a minimum and am able to be more successful in getting to the bathroom before I have a problem. However, this means that I don't have one for the night and I have to get up more frequently,which disrupts my sleep even more than it is normally disrupted.  So I asked my very competent and well educated neurologist if I could increase my dose to 30 mg.  He listened to my concern and said, that it is okay to increase that articular med by that amount,  Cool!

 I want to the drugstore to pick up the med, but it wasn't in yet. I'll have to chew out the neurologist for taking so long!  Then I got a call from his office. Unfortunately, the insurance won't pay for the higher dose.  Someone, somewhere who is NOT a doctor has decided that I don't actually need this medication at that dose.  So something so incredibly humiliating that can be held off a tiny bit with a simple mediation increase, that my DOCTOR said is okay, that would help me feel a wee bit of dignity when so much has been taken by this dumb illness, is being denied to me because the for-profit health care system doesn't want to hurt it's bottom line.   There is something truly reprehensible about that.  So I am going to box up the content of my adult diaper pail, and mail it to my insurance company.  I may keep doing that every month until someone understands that , yes, IT IS medically necessary.

Thanks for letting me get that off my chest