Welcome Back to Oregon!!

When we moved, we made it a point to identify potential regions that could potentially have better healthcare for people, like me, who have complex medical histories and diagnoses. I’m limited on where I can go so, no, I can’t always just get a new doctor when I get gaslit by doctors due to the VA.

We moved to Oregon from the Albuquerque VA AOR in the hope for this to be true. Well, just as with other areas and doctors we’ve encountered, they give GREAT lip service, however, when it comes to ACTUALLY helping, there’s lots of room for improvement.

At our first appointment, they took an hour or so to do my history, draw blood, and get my referrals for MRIs and X-rays. Great! I got my MRIs and X-rays done a week or two later in Portland. Great hospital by what we saw (this is a big VA facility, but not where I see my PCP).

A few days later, I can see my results online. What were my results? Well…

• Reversal of normal cervical lordosis
• Scattered degenerative endplate changes, most prominent at C5-C6
• Spinal canal narrowing
• Spinal stenosis
• Moderate disc space narrowing

No tests were run on the thoracic or lumbar sections of my spine, despite a history of back surgery on my lower back, and scoliosis in my mid-back, with spinal canal flattening.

Good thing I saw my results online because at my follow up appointment, my PCP didn’t discuss a single thing about the findings and my pain, stating that my thigh pain that wakes me up at night is caused most likely by my weight because, and I quote “If I recall correctly, you have the same weight distribution as I do.” I saw her 6 weeks ago. How many other patients has she seen since then? She saw me at my follow-up from the waist up because it was a telehealth appointment. I got a referral for acupuncture and possible physical therapy and chiropractor services, but...most of the services provided are not done by doctors who are familiar with my complex genetic conditions, so lots of room for damage.

We’re back to step one, where my doctors blow me off and blame everything on my weight. Way to trigger my ED again. I’m sure that my weight distribution has nothing to do with my high doses of medication and undiagnosed painful lady cycles...had an inch-long growth removed from my cervix last year, but no care has been done. It just keeps falling through the cracks.

I’m not convinced that anything will change though. This is not due to pessimistic thinking, but rather to reality. See, we are only able to bring up 2-3 things per appointment with my PCP, but that doesn’t necessarily mean that those things will be addressed. When you are starting with a new provider, a lot of symptoms have been glossed over by previous providers, “difficult patient” noted in the record, and you have a complex medical history (and body with rare genetic conditions), this is reality.

My next appointment is in 6-9 months. By then, I’m sure that I will have experienced more total dislocations, a bunch more subluxations, cramps that drop me to the floor, a face that swells up on the side to where it looks like I went 5 rounds with a door, and a forever decreasing amount of restful sleep due to pain.

I have Ehlers Danlos Syndrome (hypermobility and myopathic), fatigue, small fiber neuropathy, fibromyalgia, cervical kyphosis, cPTSD, degenerative disc disease, diverticulitis, hypothyroidism, insomnia, irritable bowel syndrome, POTS, psoriatic arthritis, head trauma, tinnitus, trichotillomania, among others. Several are still as of yet addressed or recognized. My PCP brushed off my hip crepitus, which only happens when I move and shocks me with pain when it pops out. 

But...eh, you know. Got Veterans to screw over!