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!
I'm not sure what dark valley I have been in the past year or so .. or is it the past seven years? Have I been with my dog pack so long I that I have finally morphed to Canis lupus familiarias? I am surrounded by my two old dog sisters (81 in dog years) and we kind of just blend into a lighter shade of pale gray. I still see them as two young pups in my minds eye, just as I see my sister and myself as barefoot kids on a gravel road that led to a country store.
Being sick all the time will make you old too soon. If you have a chronic illness the aging process can go into overdrive, at least so it would appear as I look into the mirror.
I suppose I should already be dead in dog years the way I currently feel. My goal each day is keep my head above water...breathe....sleep.
A year sure feels like seven in one way; but in another way it seems like only yesterday that our area was ravaged by the wildfires and so many lives changed forever.
It will be a year on November 28th. But back to the topic:
I'm dog tired...Tired to the bone...
There is a weariness of soul and body that can only be experienced by the those who are fighting one of the monsters of chronic illness. Sleep doesn't help.
Medications do not touch it for long if at all. Rest helps to some degree but it's fleeting and gets blown like dandelions in your first attempt to go shopping or take a shower.
You become your worst enemy at first, denying that some crazy syndrome or anything called POTS will take you out. You push yourself way too hard and far. Fight the good fight friend, if you so choose, but once you come to acceptance of your Dark Passenger ( good old Dexter) you may begin to give yourself a break.
Trust me I am a fighter from way back when. In another life , I like to think I might have been a warrior in the land of Amazonian women:
But warriors are young and strong. As you age you must think smart. I sure hoped and prayed I would not get to the point where I could not work full time before I got to my retirement age. Looks like I'm falling a little short of the goal, but its ok. This is when you start chanting the Serenity Prayer and self soothe with Oreo Thins Coconut and milk .
But I'm digressing into snack food. Imagine that.
In June of 2016 I had a stroke scare and was airlifted to a Knoxville hospital. All testing showed I had not had a stroke and I was sent home with stern warnings about my high BP and stress. I didn't even bother to tell them I had taken my three blood pressure meds as usual that morning. What's the point? I figured it was stress and POTS related but when one side of your face droops like a melting candle you don't want to take any chances. That situation kept me home for 3 months on short term disability and I have not been the same since. I was just getting back to full time when we had the fires. Since January of this year my symptoms have increased significantly. New issues have raised their ugly heads... one being vision and eye related. I am currently working on a modified schedule. A trip to my Neurosurgeon has revealed more protruding discs and back woes. But something interesting happened and he ask me if I had been to a Neurologist. I have been to so many specialists since 1999 when I first got sick I have lost count. When I told him about the possible stroke in 2016 he actually listened and starting asking questions about my symptoms and extreme muscle weakness. So I will be starting some testing to see if I will add a neuromuscular problem to my existing situation of POTS. I recall I did see a Neurologist in 2013 and his examination was to have me touch my nose with my finger and walk a line across the floor. He was dismissive as soon as he seen Fibromyalgia on my chart and uninterested in my symptoms of 14 years. He stated "you don't have MS..." no scans, tests or touch, just me looking like Dr. Hfuhruhurr in the below video.
I remember leaving in tears because it had taken me seven months to get in to see him. Tears of anger, self pity,depression and frustration..... You know what? They all taste the same.
So I will soon begin the journey of more testing to see if I have Something Wicked This Way Comes ( or Came , almost 19 years ago).
Hopefully I won't have to juggle, I can't hold onto stuff anymore.....
