October 2019 Update
Updates 10/30/19
Medically, I’ve had quite a bit going on lately. It’s a lot to catch up on so I’ll do my best.
Since I moved farther from my original doctor here in San Diego, I decided to change doctors rather than make the 45+ minute drive to the office once every three months to get another refill on my medication. My new doctor is now a quick 15 minute commute. Unfortunately, since it’s a new doctor and I’m on a low dose of adderall, I now have to go once a month to get him to continue to refill my prescription. And I also have to pee in a cup to prove that I’m taking my medication and not selling it. This stuff is a lifesaver for me, there’s no way in h*** I’m selling it to anyone!!
During my first visit, my doctor mentioned he had a couple other patients with either Ehler’s Danlos Syndrome or POTS or both. He asked if I had a specialist. I said no and that I’ve been trying to get one since I moved here 2 years ago but the only one within my insurance network is retiring and not taking on new patients. He did some research and found a couple of specialists to send me to. I also mentioned wanting to start physical therapy again, specifically to try aquatic therapy because I’ve heard it can be incredibly helpful for EDS and POTS patients alike. EDS for the reduced impact on joints and POTS for the pressure from the water helping even out blood pressure during movement.
He set up the referrals and I had to wait on insurance to approve all these things. He did more in one appointment than my previous doctor had done in almost 2 YEARS! Highly impressed with him and his ability to connect the dots.
UCSD called me within a week to start setting up my patient profile for the cardiologist. He specializes in dealing with EDS patients and those with heart disease. The original appointment was setup for about 3 months out...Gotta love waitlists. They also set up an echocardiogram that is some kind of super special thing that looks at a lot more than a traditional echo. I can’t remember what they called it. But about a week later, they called me and said my insurance didn’t approve it because I needed to be seen by the doctor first. Insurance hoops. Another week goes by and they have an opening for a few days later with the cardiologist. I asked if my insurance had approved it (before we setup an appointment). And the lady said she’d look into it to make sure and call me back. Turns out it was approved but my doctor’s office just hadn’t faxed over the paperwork yet. We set the appointment for a few days later.
I got into see my cardiologist within a month of the initial referral!! That’s super impressive for it being a doctor outside of my network and with a full case load! He looked at my older echocardiogram (from last year) and said things look normal there. Did an exam, asked me a few questions, and then asked if I’d ever done any DNA testing. I said no. And then he began to question my EDS diagnosis because I didn’t have the DNA testing done. I told him I had only been aware of the Beighton Score test and wasn’t aware of the DNA sequencing specific to EDS. He said that the problem with the score is that it was developed in the 90s and technology has advanced since then. And that some people show the Hypermobility but don’t actually have EDS.
In my head, does it really matter? I have Hypermobility, chronic pain, and POTS that is most likely caused by complications from EDS.
He also asked if I had ever had a muscle biopsy done to confirm my small fiber neuropathy. I said no. He put in a referral to a neurologist that specializes in it.
He said he would wait on the neurologist before having me setup DNA testing, in case she wants additional tests added (so I’ll only have to complete the testing once).
**Side note** About 5 years ago, I could have had DNA testing done to determine if I had the vascular form of EDS but it would have cost me $600 (insurance wouldn’t cover it) and I honestly didn’t (and still don’t) want to know if I have it. There’s no treatment and I already regular appointments for echocardiograms. All of my tests have come back normal. My heart is structurally sound. ***
He then left the room and I kind of felt like the hour and a half I spent in traffic was pointless. Until he popped his head back in about 5 minutes later and said “You have chronic constipation and swelling in your legs. Do you also deal with painful periods?” I said “yes”. And he said there’s a link between my symptoms and the possibility of an iliac artery compressing an iliac vein (The condition is called May Thurner Syndrome). To find out, he ordered a special abdominal MRI that only UCSD has access to (and it’s made by TESLA!). There’s been evidence of EDS patients showing improvement if they have this by placing a stent in the vein to reopen blood flow.
Ever since my move in late July, I’ve dealt with swelling in my legs. It also doesn’t help that I have a job where I spend 95% of my workday on my feet. Standing in one spot at a desk. I’ve tried regular compression stockings over the years but struggle to get them on and off because of how much it hurts my hands. It takes in a good 15 minutes to get ONE of them on and then the pain in my hands is awful. And the stockings always feel like they’re pinching my ankles, super uncomfortable — to the point of painfully distracting. So I found out they make ZIPPERED Compression socks!!! Granted, the ones I own aren’t the super expensive ones that I should have :/ so they’re only 15-20mmhg but they’ve been working some magic for me so far 😊. I wear them all day while I work and on days I’m at home and feeling POTSie.
Also working on getting things setup for aquatic therapy (need to buy a swimsuit first haha!). It’s a bit more of a drive - roughly 30 minutes from my house and I’ll need to go at least a few days a week.
Things have been stressful because I’m job hunting. It’s now the slow season for tourism in San Diego, so the hotel industry is cutting back on shifts. I’m doing my best to keep up with bills and things but money is definitely tight.
To help change my career trajectory, I decided to start school next week to become a Certified Medical Assistant. I’ll finish the program in March of 2020 and then go for my certification test. And hopefully that’ll give me a foot in the door to the field I really want to be a part of — Patient Experience Improvement. Or else, I’m going to have to start figuring out how to construct my own community clinic so I can get myself a job haha!
This should be an exciting year ahead! Here’s to finding another job and getting to where I want to be with my career after I’m done with school!
