CW: medical issues, some maybe more graphic than you’d prefer. Medical gaslighting and trauma.
My thumbs have been numb and I’ve been in the midst of making even more appointments for me and my son. I am not listing this time as a gap on my resume if I am ever diagnosed and treated and I can go back to work. I’m listing myself as a “freelance healthcare advocate.” I mean it’s a volunteer position technically. But very rewarding on very few occasions.
Instead of grabbing documentation to justify a very much needed referral, I was trying to distract myself by writing. I had to stop being on Twitter for a bit because I’ve reached peak frustration with the state of my state’s medical system. The main issue is I get a million recommendations and treatments for my symptoms, without receiving a diagnosis for what might be causing the more debilitating and unusual ones.
Vestibular therapist suggested a low histamine diet. Dry eye guy suggested a Whole Foods diet. Primary said cut out dairy and then cut out gluten. If that didn’t work try the FODMAP diet.
Are you all aware that food is expensive? Especially when you have income limitations because (though you are disabled), you are not receiving disability benefits? My kiddo only eats specific foods so I end up purchasing a lot of separate items as it is. I have been trying to figure out how to work very specific and often very expensive diets into my so-called budget.
And I’m trying to do this as much as I can without asking for money. The pandemic has been so merciless with so many folks. And I’m stubborn. I really do want to get better so I can go back to work. A job would be way less stressful than constantly trying to stay on top of symptoms, appointments, and paperwork.
Having a limited income also means though specialists really want me to go to University of Utah, I can’t realistically. I have very little insurance coverage there. I am having a lot of neurological issues and everything is a struggle. Even finding the right lighting conditions to file away medical paperwork on decent days is a challenge.
I’ve looked for health advocates for complex cases in Idaho. The only ones I have found are through my insurance company. I need to call the secondary insurance to see if I have any options at all.
But without being able to track what I’m supposed to do on a computer, things get put off or missed. I’m trying to get better so I can be a better advocate for my son, and I’m good at staying on top of his stuff. Just not my own.
So many people this week have suggested I make so many phone calls. I played “Who’s on First” with my primary physician’s office this week. An urgent care doc here said my lack of referrals was due to too few providers in the area and too many new patients. Reasonable, we have had a population boom. What wasn’t reasonable was for him to add that his “advice is not to present with anything hard to diagnose.”
I don’t have a choice in the matter. I absolutely would not wish my current state of health on my worst enemy. The level of discrimination I’ve had to deal with is ludicrous. I definitely don’t want another specialist. If I had a dollar for every time I had to be at an appointment I didn’t want to be at, I wouldn’t need to appeal my disability decision. I need to see doctors until I am diagnosed and treated. I don’t know why that’s so hard for non-disabled folks and primary providers to understand.
First primary doctor I saw here told me to “Take a chill pill and lie in a dark bath” during the onset of photophobia. I felt validated when the ophthalmologists almost immediately tried to hand me off to a neuro-ophthalmologist. But he didn’t treat photophobia.
Next primary doctor kept saying I seemed anxious. I was anxious. I still couldn’t see. I was twitching and drooling under florescent light. I was supposed to go back to school on a computer. That wasn’t going to happen unless someone fixed my eyes and/or brain. A vocational rehabilitation professional I was working with, who was blind, warned me that psychiatric medications could complicate my dry eye and make me go completely blind.
Yet the only thing my primary was suggesting was psychiatric medication. I kept having to explain that i didn’t want to lose my remaining vision. And besides, I have people for that. They are my medication manager and counselor. And even they backed off on the conversion disorder theory once the dry eye and the uveitis were documented.
The degree and length of the uveitis promoted the dry eye specialist to preauthorize amniotic bandages for my eyes. It didn’t come to that but when your immune system tries to eat your eyeballs yes. Yes it does make you anxious. Is that just because I have an anxiety disorder? Because I feel like that would make anyone anxious.
And the eyes are just the tip of the iceberg on my symptoms. I have documentation and pictures to back my symptoms up. and I am going to the ENT and dry eye specialist again next week. I am hoping to have their written recommendations for next steps on file so my other provider believes me.
So when I tell you I’m sick, it means I’m sick. And when you tell me I’m “fine,” it’s beyond dismissive.
My newest symptom, which I hope goes away, is spatial hearing loss. I wasn’t able to read much on it but it seems like another neurological issue. So my list of brain issues or potential brain issues is as follows: dry eye that isn’t a gland dysfunction, severe photophobia, vestibular issues with generalized headaches, full-on migraines, ocular migraines, brain fog/memory issues, neuropathy, tinnitus, some kind of autonomic dysfunction, and visual static. In addition to the spatial hearing loss which I’ve only experienced three times this week.
There are other issues I’m forgetting because (ha) that’s what I do. Like the difficulties with word finding and spelling. I am 44 years old. I graduated summa cum laude with a BA in performing arts. I often cannot spell the word “milk” on a grocery list. And I don’t know what “chicken sauce” is supposed to be, but I want no part of it. I battle nausea too much as it is.
I have a migraine specialist but the injection he prescribed made my headaches longer and more intense. When these different specialists try to address different symptoms, they often make things worse. And I’m probably going to end up getting called noncompliant at some point but really, I am just practicing self defense.
No worries? No. Worries.