Tuesday, June 14, 2011

Fibromyalgia - She Rules My Life

Today was the best day I've had in awhile. The fatigue was still bad this morning and I went back to bed as soon as Bill left for work. When I woke up about 1:30 I felt much better. My pain was a Level 3 most of the day but as I've been more active it's coming up and it is quickly approaching a Level 4.

For my pain to be so low is not normal.  I wish that it was.  It would make my life and my family's life so much easier.  Sad isn't it?  I know Fibromyalgia all to well.  I know that she will not make my life easier.  Fibromyalgia will do everything she can to make my life difficult.  Fibromyalgia takes away the joy of a good day because you know the other shoe will fall. You know that the pain will return. You know that not only will it return but it could come back with a vengeance like it's never been before.

It rained today and brought the temperature down.  That was a welcome relief. Had the lights not gone out,  I would have gotten a good bit more done.  I did manage to pick up a lot of clutter that was laying around.  It made the house look better and in turn, I felt better.  Tomorrow I hope to get the house vacuumed and the laundry finished.

My sleep specialist called this morning with the results of my study.  My apnea has worsen slightly since I was first tested five years ago.  I've got to take my cpap in tomorrow and have the settings changed.  He is sending the results to my cardiologist so we have one more piece of the cardiac puzzle.  I wish I didn't have to wait until the end of next month for the MRA. I would really love to have all of this finished up. It's like a dark cloud following me around because it leaves a huge question unanswered.  Have I had mini strokes in the past? Is there really a possibility that I could have a stroke or a heart attack and with no warning die immediately?  Do I have multiple sclerosis?  Am I missing out on treatment time that could make a difference in my life in the future?

It's always irritated me that doctors don't seem to have the sense of urgency that we do.  We're told that our condition could be serious and that they need the test to determine exactly what is wrong and the treatment.  It's serious but we can wait a month or more to have the testing done?  I'm also having a hard time wrapping my brain around the fact that even though my cardiologist is requesting the test, I have to see the neurologist first?  It would seem to me that professional courtesy (and common sense) would be to schedule the test, review the results and share them with the requesting specialist.  If it's indeed a cardiology problem, I save the time and money of a neurology appointment and the neurologist has an open appointment for someone that really needs to see him.  If it ends up it's a neurology problem, then we've already got that information when I see the neurologist and treatment gets started sooner.  Makes complete sense to me.  What do you think?

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