Personal Update (8.13.18)

I haven't done a regular ol' check in with you guys in a while. I've tried to be as active as I can be on Instagram, but there's only so much you can capture in a singular post or a handful of 24 hour story clips.

I saw my cardiologist in June for a check in, and at the time I had just seen the gastroenterologist but had yet to have either of my gastric emptying studies. She agreed that the gastrointestinal issues I described sounded, on the surface, a lot like gastroparesis. She told my mom, who came with me for the appointment, that gastroparesis is not an uncommon issue in patients with EDS, though we hadn't confirmed or ruled out that specific diagnosis yet. She told us that my lack of hydration was a serious roadblock, but that there wasn't much she could do at the time since the GI doctor was still working out exactly what was wrong and how we could cope with it. She said she felt more comfortable keeping my POTS treatment plan the same until she saw me in another two months, to give us some time to figure out my mess of a stomach and to start in with some treatments for it.

My liquid stage gastric emptying study came back normal, and the GI said it's not uncommon for that to happen in patients with gastroparesis. My solid stage test, on the other hand, turned out the be what another doctor referred to as a "half life test" instead of the full test we thought I would be undergoing. So instead of being monitored for four hours after the nasty radioactive meal, I was monitored for two. In the full test, they take images of your stomach over a four hour period, by the end of that period a healthy stomach would have emptied completely. In a "half life" test, they take images over two hours, by which time a healthy stomach would have emptied about half of its contents (I believe this is how it was explained, I could be wrong). From what I understand, most doctors agree that a half life test isn't an accurate indicator when testing for gastroparesis. Apparently it's not terribly uncommon for people with delayed gastric emptying to have normal test results after a two hour test. Nevertheless, the gastroenterologist took one look at my results, stopped my Zofran (for nausea), and dropped my case completely.

I had my long awaited and eagerly anticipated appointment with the department of genetics in mid July. We found out upon entering the office that I was being seen by a nurse practitioner in the office, rather than an actual geneticist. She then proceeded to go over the checklist for hypermobility type EDS, which is not what the doctor who referred me was concerned about. She skipped at least three questions off of the checklist, and ignored all of my mentions of fragile skin and cigarette paper scarring. The criteria for hEDS diagnosis states that if the patient in question has papyraceous scarring and not keloid or hypertrophic scars, that they should receive lab testing for classical type EDS. The criteria also states that even if the patient meet the criteria for an hEDS diagnosis, if they have abnormally fragile skin the diagnosis is void and they should be tested for classical type. I was referred to this office to be tested for cEDS, the referring doctor himself told me that my degree of hypermobility, hyperelastic skin, level of pain and joint instability, coupled with the fact that my skin is abnormally fragile (easy bruising, splitting/being cut easily, and very very slow to heal) is highly indicative of classical type EDS, and that he is referring me to receive lab testing to confirm or deny his suspicions. I waited for 6 months only to receive the wrong test without even seeing the specialist. The only thing I got out of the appointment were referrals to rheumatology, pain management, and physical therapy. One month later and those referrals have still not been sent out.

I saw my cardiologist again about a week ago for another check in. She was annoyed to hear that the gastroenterologist had dropped my case, and furious to hear about the shitshow that was genetics. She agreed that my symptoms match classical type, went on and on about how I should have been seen by the doctor, and went red in the face when she heard about the referrals. We decided to increase my beta blocker, and to check in over the phone in a few weeks to see about switching to a long acting form (instead of the fast acting form I'm on) and to see about adding Florinef for my blood pressure.

I have an appointment with a new primary care physician in a few days to see if he's willing to take on an (unfortunately) complex case like mine. I've been trying to find a primary care physician for a few months now, and I'm really hoping this will work out. I'm hoping that while I'm there I can talk to him about Zofran and nebulized asthma meds, as well as a referral to a less shitty gastroenterologist and perhaps and asthma & allergy specialist since my symptoms continue to get worse and worse. It's a lot to hope for and ask about, but I need to get this under control so I can get some function back.

In other news I've been getting back to work at my retail job now that they've fixed the air conditioning and I'm no longer at risk of fainting all the time. It's rough, but it feels good to get back to work even just a little. I've started journaling again as well. Life has been especially stressful and upsetting over the past few months, and I really need an outlet that isn't completely draining. Lastly, I've started reading more. I'm trying a mix of graphic novels, regular novels, and some non-fiction (I'm not in school currently and I don't want to lose my edge anymore than I've already lost it).

This was a lot to cram into one blog post, I know. It was probably pretty rushed, too. I just wanted to send out an update on what's been going on with me since I haven't in a long time.