(Note • Unfortunately, someone's already dead @this point)
My mind went to a place where there was some sort of superhero that (prior to death) could search through the diagnosis, computer contents with clues to signs & symptoms, etc. to exact healing.
But the thought was fleeting & back to reality I spiraled ... my days of searching for diagnosis and medical solace has long since passed me now. Not a distant memory, I vividly recall the long road of desperation and exacerbation.
I felt if I had a name, if not reason, attached to my ailments then some sort of normalcy could return to life. With diagnosis would certainly bring resolution? Unfortunately, it's brought anything But!
Beginning with Dercum's I found having a label did not necessarily equal a cure or even treatment. And many years later as the diagnoses' compiled a sickening list of comorbities I relented my thoughts of cure(s) or even a sense of being understood.
Traditional medicine has failed or worse has been counterproductive toward healing, in my case. The myriad of medicines to "manage symptoms" have never served well or have actually compounded the preexisting hurdles with new obstacles/set backs.
If ever I were to entertain seeing another doctor, the only one I can imagine is Dr. Herbst. She specializes in (the first of my rare diagnosis) Adipose Tissue disorders & their treatment. -emphasis on the word "treatment"- Outside of a visit to her TREAT program in Arizona, or a geneticist, I don't foresee a scenario that will take me to another MDiety.
That is not to say I have given up, anything But! I simply have chosen to adapt to my own understanding & abilities.
That being said, I don't recommend anyone take my path but be diligent in finding your own!
Though for awhile I longed to be validated in my search for answers my path has led me to a bit of isolation, down to a meager handful of support. I found overtime that the medically delivered definitions really didn't amount to a hill of beans to any one else but me and while ultimately my family tree & genetic lineage would connect the dots ... My elation in discovery was a further bitter sweet divide.
And still the only answers the (so called: western) medical community can provide (outside of treating individual symptoms with a myriad of pharmaceuticals each with their own consequences) equates to turning off or killing off the God given parts of me, that I refuse to change to accommodate the rest of society, family, friends, or otherwise.
This life experience has made me grow as person, like I would have never imagined possible.. Again, with every curse there is a blessing & I refuse to lay in bed simply awaiting sweet death and the time when I can shed this mortal flesh.
A dear friend for nearly 35yrs recently came to visit & while discussing my grandmothers 90th birthday she made the comment "longevity won't be your problem" ... Truly that's the bitch of it!
So taking sage advice & being my own best advocate, each day I must accentuate the positive & eliminate the negative in every aspect from diet, attitude, stressors, etc...
Find the blessing in the curse on a consistent basis.
None of my days will be rainbows & butterflies ever again... It's so easy to see negativities or find stress but for each I look for a way to find a different perspective.
[Case in point:
I can bitch & moan about the last couple of years being lost (so to speak) or I can elate in the fact that I had someone who gently cared & provided for me to do so (find medically supported answers, gather knowledge to better myself, & become more physically able over time) rather than being abusive or degrading through the process.]
I must force myself to move. Longevity is my curse so I need to make my time here as tolerable as possible & immobile agonizing is counterproductive to that end.
I cannot judge myself by others abilities or accomplishments. Some days a load of laundry is my exercise & I'm OK with that... It wasn't that long ago that just brushing my hair was an accomplishment.
And one lesson in particular that proves to apply consistently important..
Trying not to hold others accountable for my expectations!
But, it's also OK to let toxic relationships go. So, while I may mourn for lost relations, I will not adopt a woe with me attitude ~
I worked very hard to adopt these attitudes, especially of late & they have served me well.
I wasn't able to do the 7 states in 7 days with Monica, nor coordinate the family gathering for another 5 generation pic for Meemaw's birthday however, I did make a trip to Minnesota (1300miles away) to visit my two eldest children & granddaughter followed by a whirlwind visit from my BFF.
Having goals helps motivate, gives a feeling of accomplishment, & it's important to hold myself accountable.
Even though I'm not taking over industries or changing the world...
The rewards from the events as described above have been immeasurable...
And given a choice between the two ~ I choose the latter!
https://youtu.be/KRUErh47sao
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