I’m Bbbbaaaaccckkkk!!!

August 18, 2009

Well, I’ve taken a bit of a hiatus for personal reasons.  I’m back though and would like to thank everyone who visited this blog while I was away.  And a special shout out to everyone who has commented during this time as well.

I am glad to report that I am still feeling very healthy.  The cytoxan and subsequent follow-up on cellcept has been successful, as has been the Baclofen Pump.  I am more mobile than I have been in years.  It feels good.  There were some minor bumps along the way though, just like real life.

I have switched from cellcept to myfortic.  I had some stomach issues with cellcept which I guess can happen.  I am told by docs that most people tolerate the med okay. I didn’t.  No big problems.  While on cellcept I had a constant feeling of nausea and then some suspected bleeding.  A quick endoscope and a change to myfortic fixed that minor issue.

Myfortic is the same med as cellcept only with a time release coating that prevents stomach problems.  That is the best way to describe it, I think.  Also the dosage is a bit different.  You need less to obtain the same effect.  So why would docs prescribe cellcept instead of myfortic?  Good question.  I had the same one myself.  I bet you can guess the answer.  Go ahead, guess.     The answer is insurance.  Myfortic is more expensive than cellcept and considering that “most people tolerate” cellcept well there is no point to cover myfortic before trying cellcept.  Or so goes the politically correct response from most prescription coverage plans.

Oh, don’t get me wrong, I am not bashing the insurance companies.  I am hoping they are my friends in light of the new healthcare initiative pushed my the present governmental regime.  That is all I am going to say regarding politics. We all have our own thoughts and ideas and feelings in the matter.

The other issue for me, I guess it is an issue.  I haven’t really made up my mind yet.  But since I got the baclofen pump, I haven’t had a refill appointment in which the pump wasn’t increased.  Everytime  I go for a refill I need to increase the dose. I am stiffening and sore.  So what’s the problem with that? I’m mobile, I’m not in severe pain, I’ve been able to keep active.  Sounds like a dream come true.  And it IS a DREAM COME TRUE!

I just have this nagging feeling that as good as I am right now, some symptoms are never going to go away, even for a moment.  Spasticity is apparently here to stay. I’ve made friends with it and am so thankful for the baclofen pump and the docs who knew when to offer it to me.

Since the implantation of the pump I have learned that some MS patients are found in nursing homes wrapped like pretzels from the effects of spasticity.  These patients didn’t have docs that knew about the pump or cared enough to find out.  I heard about one woman, in her late thirties with children, who was left in a nursing home to curl up.  After the pump implantation she was able to go home, in a wheelchair (at least she was sitting up and uncurled), feed herself and be a part of her family.  WOW! That is a success story!

When I hear stories like that, it puts my life in perspective.  I am thankful for the technology available today, thankful for my doctors, thankful for my family’s support and happy to only have my current issues.  Sometimes the devil you do know is better than the devil you don’t. AND it is always important to research, reach out and empower yourself with knowledge.