As it would seem, everything comes together to work against me. Same issues are always the underlying factors.
I have self managed for as long as I can muster. I don't worry, I give it to God, and every time I am reassured by his grace & mercy.
I know my body even if the recent doctors and their level of care can't appreciate. So begins a cycle of self diagnosis & homeopathic care only reaching out when pain becomes so unbearable & seemingly unsurmountable.
At this time, I have become increasingly aware that I must seek out a medically licensed professional for intervention. But, as most others would simply make an appointment or drive to the emergency room... I am not afforded the same luxury.
I am mortified by the prospect because of the contraindicated care and almost degrading process, as encountered on these occassions since diagnosis.
An effort in futility; getting "them" to understand that I have a tissue disorder that coincides & interferes with all of my associated signs & symptoms!
I am a Zebra not a Horse!
[Not disturbed/Not a drug seeker]
So today I struggle with how to pay the past due premium on the Obama~care brand of BCBS or any subsequent bills if I were to actually go to a doc or ER.
I have a Tissue Disorder!! Goes by a lot of names (ie> Adiposis Dolorosa, Dercum's Disease, ..) and is under appreciated or misdiagnosed as a lot of other things because of its rarity.
My pain ebbs & flows, its chronic so I've dealt with it & educated myself along the way. Really since 1985 when I injured my neck/back in a type of MVA. Although a number of findings such as mild scoliosis, cervical spondylitis, & arthritic changes where found during chiropractic care it wasn't until after 2000 that clinical diagnosis was made. The struggle is real!!
I pursued answers & treatment with nuerologist & orthopedist in conjunction with gp until it seemed more harm than good was coming of it. Focusing on self managed spinal care & pain management since having to discontinue Neurontin and interspinal injections as well as other therapies with regard to: thoracic outlet, cervical stenosis, levo-scoliosis, (including ischemic attacks & a bout with gastroenteritis).
So today, I acknowledge my fears and with the prayer that my grandmother spoke from Timothy... To set out to find a doctor !
(And hopefully with the white papers available from Dr.Karen Herbst (AZ) I will find THE doctor!)
geographically: (hoping for)
Rock Hill SC / Charlotte NC
discipline: (???)
Rheumatology, Endocrinology, Neurology
3yrs ~synovial cyst of transverse process at T12/L1, chronic pain/fatigue, Barrett's Esophagus, & abdominal free fluid.
2yrs ~2 bouts flu, followed by a shingles appearance rash on back, subsequent sinusitis with perceived decrease in hearing.
1yr ~Costochrondritis /Tietze,
(hypertension & murmur cardiologist contradicted)
discontinued all prescriptions
6mon ~Progression of right-sided inflammation (joints & tissues) neck to toes with upper & lower nerve issues.
(Experienced a carbuncle; now healed)
Currently Experiencing
Exhaustive Fatigue
throat constriction with pain
(not globlous? nor sore throat)
pain at base of tongue,
neck swelling & discomfort, persistent cough of sticky mucus,
neck muscles tight with spasm,
Swollen tonsils & nodes
Serious discomfort & perception of lump at collarbone/brachial area
vision changes,
hip and shoulder laxity with pain
Changes in coccyx - sacral
new worsening areas of
numbness, tingling, & shooting
Lipomas
intermittent disturbances
Rashes,
bladder, & bowel
Livedo Reticularis
Familial;
Maternal Grandmother suffers from a number of related conditions with tissue disorder as underlying cause including; thyroid, angina, loefflers, fibromyalgia, etc...
Eldest child schuerrman's spine & migraine syndrome
Middle child born with Mesynchemal Hamartoma of liver
Youngest child gallbladder & migraines
Mother contracted Polio as child
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