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Friday, May 10, 2013

Thank God It's Friday!!

I swear, every week at work when Friday rolls around I say the same thing to my friend David " I don't think I have ever been so glad to see Friday." But I really mean it this week.  I think this could be the worst fatigue and POTS symptoms yet.  I heard a saying once that  "some days are chicken salad and some are chicken shit" well this has been a week of  heaping chicken poop. I have been on my new meds (Aldomet and Inderal} three weeks today. Do I feel any better? As bad as it breaks my heart to say-no. I think my heart rate is being controlled somewhat better than with the Toprol, but my diastolic BP is rarely under 100, even when I am sitting. God only knows what it is after standing for a few minutes or walking down the hall at work.  I will give it some more time and then I suppose me and the local doc will try Plan B- different meds.  For anyone new to my blog, I have been battling some invisible disease since 1999. I finally got a Fibromyalgia diagnosis in 2000 and basically told to live with it. I think that is the standard of care for most folks with Fibro. Started POTS symptoms in 2001 and down hill like Lindsey Vonn since then, crashes included. My primary care got me into the Vanderbilt Autonomic Center for testing last month, God bless him. See my previous posts for all the adventures in Nashville and more detail of the testing. Anyway, the diagnosis by Dr. Italo Biaggioni, who by the way is excellent, is Hyperandrenergic POTS. If you don't know the sub types of POTS this particular one is usually inherited, comes on slow and gains momentum and is the most difficult to manage.  My body stays in a constant state of arousal (no, not the good kind) all the time. This answers so many questions and behaviors of my entire life. I have always been hyper vigilant, assertive and easily angered. Neck and facial flushing is also a symptom. Since my 20's if I got startled or angry my neck and chest would be completely covered in red blotchy spots. I always had to wear turtle necks or button up shirts to speak in public or go to any event that caused anxiety.  Some of this hyper vigilance  was a good thing being a police officer and at one time a National Park Service Ranger, I was always alert to danger and my surroundings. But my relations with those around me often suffered due to my over reaction to some issues and my mood swings. But our poor old bodies can only take the flood of adrenalin for so long till the inevitable happens. I do not have a doubt that my fibromyalgia was caused by the constant fight or flight response my body has been in for decades. I saw a cartoon once of a snake on a rock and it was stiff like a stick with a caption of "RELAX". I thought then, that is me..but I had no idea why I felt the constant anxiety and vigilance, even when i should be chilling and relaxing.
This week at work has been almost more than i could bear..being in a management position, I have a bit of freedom in the respect that if i cant sit up any more, I have an extra chair in my office for visitors that reclines and has a foot rest. So today I spent most of the afternoon laying in it, trying to read some work related manuals.  I know I have some big decisions in the future and I'm trying not to completely freak out. One day at a time.....
Reclining Executive Office Chair by Brookstone...heck yeah!!!
I did however go online and found a rolling office chair that reclines with a pop-up foot rest. Yay!! It is made by Brookstone and I have one ordered for my office for  when I cant take the upright position any longer, but need to stay at my desktop computer. If i go to my other chair, like today, I'm away from my work area.  I sure am hoping this will help me when I cant feel my feet after sitting for an hour.
By the way, Im getting ready to revamp the blog page and change the name since I finally have found the Wizard of Vanderbilt. So it may look a little different in a day or two.
photo of Lady Slippers in my Wildflower Garden

                                       Missing you this Mothers Day weekend
                         In memory of my Mother, Christine Parton Rickman