I’d be lying if I said it wasn’t some sort of desperation that drove me back to find actual concrete answers to my medical problems after nearly two decades of distrust in doctors. It was. And I still am desperate but at least I’m admitting it. My fatigue lately has been so all encompassing I have halted almost all activities. No more am I traveling every few days, no more am I out playing with my camera, sculpting, writing, taking courses, dealing with people on any real scale – I’m just too fucking tired. I wake up full of life, hope, and expectations and an hour later I am so tired I literally can’t keep my eyes open much less focus. And I am getting irritated. I have a life to live. This is not normal for a 33 year old. Something needed to change.
So I swallowed all my insecurities and anxieties and made a call which took me more than a year to work up the nerve for. It was to a homeopathic doctor who had diagnosed three acquaintances with various auto immune problems. Now, if I am to be honest here, bluntly so, auto immune disease are not taken seriously in most of the medical community. Although there are some mutterings that these are real diseases most doctors want nothing to do with them and are much happier to blame female patients as just being hysterical, er, “psychosomatic.” This is why I haven’t seen any new specialists in about fifteen years… why the fuck should I continue putting myself through that?
I was told this guy was so good he had a six month waiting list. Well! There were cancellations so I got an appointment just two weeks out. That hardly seemed enough time to prepare but I was just going to have to deal – though there were a few snags. The first one involved my medical records. I needed them to bring with me but they were up at the local hospital on microfiche. Seriously?! I’m not 110, I’m 33, why the fuck are they on microfiche?! Worse still the clerk told me the machine “only reads two pages at a time before over heating and shutting down.” GREAT. So two weeks later I showed up the the appointment… without my records. I did however fill out the paperwork they wanted and whew… it was intense. Even asked if I was breastfed as a baby. Asked for detailed medical information from everyone in my family. And sweetly, up at the top, it asked for sex and gender identity, allowing me to write in non-binary. I’ve never been able to do that before and always felt iffy checking the female box almost like I was some sort of imposter. This was progressive… and respectful. Maybe there was hope here after all.
It had been a ROUGH few days, I had 4 hours of sleep, it was ungodly early, and there I was showing up half dead without my records. I then spent a great deal of time trying desperately to hobble together something that made sense. What tests were done, what did the other doctors say, when were my surgeries, how much do I weigh, when was my last period. How the hell am I supposed to know!? Worst. Popquiz. EVER.
I was a fucking mess. Even though the intake personnel, other patients in the waiting room, nurses, and doctor were all very kind I still felt like an animal in a trap. Worse still the doctor had a bad case of poker face and spoke in monotone. I could not gauge what he was thinking at all. But I tried my hardest and then was inundated with a flood of information I wasn’t quite prepared for.
He seemed very concerned about my hormone levels. What? I’d been asking about those for years – even went to a specialist once. She took one look at me dressed in a crisp Oxford shirt and a fedora, gave me the hairy eyeball for my defiance of gender norms, and refused to do anything. She didn’t even take any blood. Nothing. It was the straw that broke the camel’s back. I’d been told many times my problems were all in my head but only after actual physical tests were done. If I couldn’t even get that far what was the goddamn point? I stopped even trying after that.
And now you’re telling me, a patient, I was right all along?! He asked what I had been doing for my hormonal issues and I said I’d just been playing side effect roulette with Oral Contraceptives until I got fed up and trashed the fuckers. I’d gone to three separate gynecologists begging for other options. I was told The Pill was it. Now this guy, a man no less, was sighing in exasperation for me and saying that The Pill, “…takes the ovaries out of the equation and is just ONE way to deal with this.” WHAT? Can you say that again?! I was right twice in a row?! I would have liked to have seen my expression because this was all too much to take in.
He then went on to say I probably had food allergies and he’d like to test for them but knowing my insurance wasn’t paying for this he gave me a blank sheet to check off from – $15 per test. What. Are. You. Doing? How can you give a patient control of their own testing like that?! And… food testing… why had no one else attempted this considering most my complaints are GI related?? There might be benefit to seeing what my gut bacteria levels were and he could send home a self kit for that, having me send the samples directly to the lab, again to keeping costs low. No insurance would cover that, he lamented.
He prescribed B-12 shots for the short term, something ordered from a compound pharmacy in kits to keep the cost down, and told me he wanted to get a full hormone panel done but that I had to be on a certain day of my cycle which means I had some math to do before offering up my blood. Suffice to say when you haven’t had any male lovers in several years there’s not much reason to track your period…
From here I was told I needed to get a Lyme test done, but not the one everyone else was doing, the one that actually yielded reliable results. It’d be costly but Lyme has always been a very real possibility for me – someone who likes to play in the woods and has had many ticks over the years.
From here I was sent out and their financial advisor took me aside to figure out billing and whatnot. Today’s visit was already $440 with no tests or kits or anything. My insurance of course refused to pay for anything because this doctor was not “within the district,” which was probably only three towns or so. The audacity to travel 45 minutes AND out of state to get answers! Some of these tests were $500 a pop. SO. I was asked if I had a local physician that’d play ball, so to speak. I didn’t. But I said I would try and find one to sign off on the tests and have them done “within district” so my insurance would pay for it.
So I went home with sooo much homework! I had B shots I needed to start taking, an at home stool test to send in ($205) to gauge my levels of gut bacteria and worms should I have any, I had to pick which food allergy tests I needed and find a local doctor to take that as well as a lyme test and hormone panel. And I still needed to obtain the rest of my medical records. Just thinking about it all was exhausting!
This week I tried one B-12 shot and it didn’t seem to do anything. I also completed three days worth of stool samples which was hell considering I really don’t eat enough to crap every day. Never have. So I ate, and ate, and ate, and felt horrible. It took me five days of nausea and cramping but no pain no gain, right? I was in this for the long haul..
I have my appointment with a local physician next week. I am DREADING it. I will basically have to saunter in there and say, “So heeeeey, I know you’ve never met me but I really need you to sign off on these tests another doctor thinks I should have….” WISH ME LUCK. I am going to need it!
**All photos in this entry have been taken by myself – I felt showing caterpillars turn into butterflies was appropriate for today’s entry.**
