Thoughts, musings and sometimes ramblings in honor of my Granny Parton, who was bedridden most of her life. Ridiculed and dismissed, I believe she was a sufferer of POTS and Fibro. I have just been diagnosed with Hyperandrenergic POTS,secondary Fibromyalgia and Chronic Fatigue at Vanderbilt. This sub-type is genetic and usually passed mother to daughter. Dear Granny I say this for you: I TOLD YOU I WAS SICK! image source: Daniel Robbins. Follow me via your email address!
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Sunday, April 7, 2013
What a week.. so tired and exhausted that words can not suffice. Maybe its the stress of work deadlines, budget deadlines and just everyday wheeling and dealing. E911 is a busy place, one thing is for sure- if you work in emergency services of any type you will always have a job. Bummer big time on the Savella meds..I've had to stop them due to rapid heart rate and elevated BP. This is really discouraging to me because I felt better immediately upon taking it. Even on a very small dosage, my heart felt like it was pounding out of my chest. I want so bad to take it.... for the first time in 14 years I felt optimistic about a possible drug treatment. But once again that damn big boulder has rolled back down the hill, flattening my hope and we are back to square one. Next week I go to Vanderbilt University in Nashville to their Autonomic Dysfunction Center to be tested for POTS (postural orthostatic tachycardia syndrome). Yet another reason I chose to stop the Savella until I could get some information on whether this fatigue is a by product of POTS. If you have POTS, you sure don't want to take any meds that cause runs of tachycardia. I have been reading a lot about chronic fatigue and its possible causes and POTS is a culprit to rule out. There are certain things associated with POTS that are unique: basically when you stand , your heart rate rapidly accelerates to a very high rate and your blood pressure usually drops resulting in syncope or fainting episodes. I can't stand for long without feeling like I'm getting ready to pass out. There are several other conditions that are all in the same family and they usually cause extreme chronic fatigue. I have been hospitalized in the past for tachycardia upon standing and the syncope so my primary care doc made arrangements to get me into the very distinguished Vanderbilt unit. I thank God I have a wonderful primary care physician who understands and acknowledges Fibro/CFS and works diligently to try to help me. I am just flesh and bone (why I still have to remind myself of that is an entire post in its self ) and I have days the devil himself couldn't stand me and today is one. I'm having a minor mad at the world/depressed episode. I have done absolutely nothing but lay in the bed all weekend. It is finally beautiful outside and through the windows I see groups of people walking and riding bikes by the Little Pigeon river. I live in the most wonderful community at the entrance to the Great Smoky Mountains National Park, and yet I might as well be in solitary confinement. I want my old life back, even if only for a day or so..... I guess that zap of nor-epinephrine in the Savella made me a happier person for a few days and I dared to hope and dream of improvement ...it's hard to return to the rut of just going through the motions of living every day. But tomorrow is another day and there are so many people out there with problems and heartaches much bigger than mine....so God willing, I will head back to work tomorrow and gird my loins and take care of business and attempt an attitude of gratitude.