No guarantees in life. I figure I must be especially stubborn if God feels the need to reteach me lessons in humility.
Like you, I have a bunch of other stuff going on, too. My health has essentially been in free fall since about 2014.
I have hypermobile Ehlers Danlos Syndrome. hEDS is a genetic connective tissue disorder. I don’t heal well, don’t make collagen well. Consequently, I fall apart zombie style. My wrist fully dislocated last month for no reason. One shoulder regularly subluxes; the other completely dislocated last year and has a cartilage tear that needs fixing. I have severe degenerative disc disease from my skull literally to the tip of my coccyx with 7-8 herniated discs and the rest are moderately to severely desiccated. It’s actually a lot easier to describe the joints that aren’t yet affected. I had 24 medical interactions last month with a small village of specialists (not counting the kidney stones induced acute renal failure - 2nd kidney failure in five years). There are ramifications for MAV.
I’m getting a cervical nerve ablation next month to see if some of the migraines and the optic neuralgia are referred. My optometrist, retinal specialist, neuro-ophthalmologist, neurologist, physiatrist and ENT are otherwise stumped. Spendy call that one. MRI was clear except for the known birth defects in my palate and sinuses and the year old sinus infection. I’ll see a neuro-optometrist next month. Your vision and mine sound equally bizarre. I’m seeing too much false motion, extra colors, blind spots, halos and general auras. The dizzy isn’t helping. Headed for another round of nausea inducing vestibular rehabilitation therapy next week. Oh joy.
Hearing is messy, too. I get you there.
I’m being evaluated for Mast Cell Activation Syndrome, Positional Orthostatic Tachycardia Syndrome, Orthostatic intolerance and Thoracic Outlet Syndrome. Common co-travelers with hEDS. I’m almost certain on the MCAS and OI. Got some genetic testing coming, too for 13-15 genes.
When I was diagnosed with MAV I just wanted to go back to having high bp, hypothyroid and polycystic ovary syndrome. Then came MAV and endometriosis and arachnoiditis. Never thought I’d see a day where I wanted to go back to all that plus MAV and not the new list. It’s absurdist, pitch black humor.
I’ve burned through every scrap of time off I’d accrued. My boss in discussion about long term family medical leave last week asked me what I want and what I need. What I want is to go back to my plumb city job as the building and planning director. What I need is probably going to involve another massive ego hit and a great deal of uncertainty. Lessons in humility.
Good luck my complicated friend. I get it.
