Health Update #1

Hello, people that are interested in me and my life. 

As most of you know, I've been struggling with a health crisis since 2019. In 2023 it became bad enough that I lost my job, and we subsequently lost our house (which is itself a very long story), and moved to California to live with my mother-in-law (yet another saga of a tale). I can't write everything all at once, so this post is strictly regarding my health, and maybe I'll get into all the other dramatic happenings in another post. 

I've realized that even if nobody sees this, writing it out helps me understand myself and my situation more clearly, and also helps me process through all my intense feelings. So here's a whole lot of TMI for you (and me)!

Here's a list of what I've officially been diagnosed with in this past year:

• Ehlers-Danlos Syndrome - hypermobile type (hEDS)
• Mast Cell Activation Syndrome (MCAS)
• Intracranial Hypertension (IIH)
• Venous sinus stenosis (transverse / sigmoid)
• Empty Sella Syndrome
• Osteoarthritis - specifically facet joint arthritis
• Cervical Foraminal Stenosis
• Radiculopathy (affecting my right arm, which is my dominant)
• Degenerative disc disease w/herniated lumbar disc
• Insulin Resistance
• Irritable Bowel Syndrome (IBS)
• Hiatal Hernia with dysphagia
• Temporomandibular Joint Dysfunction (TMJ)
• Pelvic floor dysfunction
• Obesity

Here's a list of stuff I MIGHT have (testing in-progress/pending):

• Postural Orthostatic Tachycardia Syndrome (POTS) or some other form of Dysautonomia
• Craniocervial Instability (CCI)
• Hypopituitarism (due to Empty Sella)
• Sjorgen's Syndrome
• Hashimoto's Disease or some other form of thyroid dysfunction
• Reactive Hypoglycemia
• Polycystic Ovarian Syndrome (PCOS)

Additionally, here's all the mental stuff I was already diagnosed with before my body started freaking out on me:

• Autism Spectrum Disorder
• Attention Deficit Hyperactivity Disorder (ADHD)
• Obsessive Compulsive Disorder (OCD)
• Complex Post Traumatic Stress Disorder (cPTSD) also known as developmental trauma
• Anxiety
• Depression
• Insomnia

Quite the list, I know. Five years ago I felt pretty good, physically. I was a healthy weight, I had occasional headaches and frequent UTI's, but nothing life disrupting. Then I started gaining weight. And gaining and gaining! I gained 100 lbs within 2 years. Still not totally sure why, though I suspect it might have had to do with my body becoming more fatigued and painful little by little. Things I used to do without a thought were starting to become very taxing, and I was beginning to consistently injure myself in lots of little ways. 

Then, more and more new symptoms started manifesting. And once they had manifested, they all slowly intensified. I started keeping track of all the symptoms and their frequency and severity on a spreadsheet. That spreadsheet has 98 items on it.

Growing up I'd had some weird body things, but nothing alarming. I was pretty flexible (queen of the sit & reach test!). I had really terrible posture. I was prone to bruising and sprains, but figured I was just clumsy. I had horrible "growing pains". I would get skin rashes from random things like touching grass or being out in the heat too long. When I sought treatment for a kidney infection in my early 20s, I found out that I am allergic to Ciprofloxacin. 

Now I know that those are all signs of a connective tissue disorder. Fast forward to my 30s, and when I was finally able to be assessed by a geneticist. I was diagnosed with hEDS, and referred to a bunch of specialists to test for a bunch of other disorders that are often co-morbid with EDS. 

After moving to California, I joined a research clinic who has been guiding me through a myriad of testing and helping me access some more experimental treatments. I've also started physical therapy and pain management, bought a bunch of helpful medical devices, and consulted with a neurosurgeon (no spinal surgery needed so far!). 

My next big hurdles are finishing up all the testing required to see whether I have any of those other diagnoses, getting into a routine with all these new treatments and lifestyle adjustments, and last but certainly not least, applying for disability benefits. 

l have retained a law firm to assist me with getting on SSDI, and that will likely take a year or two. Then hopefully Jake and I can get back to some kind of normal by paying down all the debt we've accumulated since I started getting sick, and moving out to a place of our own again.

So there you have it, a big fat overview of my current health status. I have good days and bad days, but mostly "meh" days of fatigue, general weakness, and moderate pain. I'm grieving the health I used to enjoy, and the things I thought I'd be doing at this point in my life. However, things are ultimately going pretty good (despite how shitty I feel), and on track to get better. I'm in the in-between: no longer "before" and not yet "after". It's frustratingly liminal, but temporary.