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Tuesday, May 15, 2012

What a month this has been.. and it's only half over

I'm sitting here tonight watching the television program Private Practice, where one of the main characters is in labor and refusing medication to ease her intense discomfort.  As I see her racked in pain, crying, it takes me back to what happened at the end of March with that horrible kidney stone.  I was in more pain than I have ever experienced and was terribly frightened that it was the MS attacking me, but in a way I had not felt before.  Just the memory of that day/evening has me crying more than I did when it happened.  I realize being in labor is probably more intense than having a kidney stone, but at least you are somewhat aware of what is happening to your body and afterwards, you get to hold your precious baby!
This entire month hasn't been what I would call ideal.  Try as I may, I have not been able to get through to my general physician's nurse to make an appointment to see him to discuss my low blood pressure.  At a friend's suggestion, I called my endocrinologist's office and am scheduled to see one of the nurse practitioners this Thursday afternoon to address this issue.  I hope a solution can be found as I am growing tired of feeling exhausted every moment I am conscious.

I spoke with a representative of Tysabri's Touch Program, the support program for those of us on this disease-modifying drug.  I was curious to know if having continuous low blood pressure was a common side effect of being on Tysabri or if I was in the low percentile, as is usually the case with me.  I already knew it was common for blood pressure to drop during or after the infusion but I wasn't given much information other than that.  I will need to address this with Dr. Short (neurologist) when I see him next month before I receive the Tysabri.

I was extremely happy last week when I was able to drive but this week has proven to be less thrilling.  I was scheduled to see my chiropractor yesterday but was unable to drive due to my right leg feeling as if it weighed a ton and experiencing too much weakness after walking only a few steps.  My parents had been out of town most of the day so I changed the appointment for today, which I ended up cancelling since I was not feeling too well because of my low blood pressure.  If it's not one thing, it's another!
To make my life just a little more interesting, a physical therapist is coming to my home tomorrow afternoon so we can begin my new program.  Ugh.  Good timing!  I'm sure I won't be up to doing too much while she's here as I will let her know what has been going on with me health wise, but at least it's a step in the right direction.  I've grown tired of hurting from simply making myself a sandwich or getting a cup of coffee.

I do hope the rest of the month shapes up better than it has been, but only time will tell.  I can't wait to have another batch of good days again or at least one or two decent ones where pain is the last thing on my mind.  Ahh, how nice that would be!

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