Living with an (almost) Invisible Disease
By: Damsel In De-Stress
Tags: Womens Health, Thyroid, Doctors, Stories, Life Lessons

Photo by Dev Asangbam on Unsplash

Living with an (almost) Invisible Disease

Disclaimer: I am not a doctor and you should not follow any advice presented here- medical or otherwise. In fact, you shouldn’t do anything I do. I’m a self medicating lunatic.

When we last left our devastatingly beautiful protagonist, she had just been diagnosed with Graves disease, had destroyed her marriage and was popping copious amounts of Advil to deal with the pain of her fibroadenoma tumors that were riddling her perfect breasts. If that sounds like a story you want to read, then settle in kids.

When my endocrinologist moved hundreds of miles away just a month after our second visit, I felt betrayed. I realize that seems over the top dramatic, but it’s true. I had finally found someone to tell me the reason for my crazy and she had treated me with kindness and respect and even empathy. Even the tough news about the eventual prognosis was delivered with an air of tough love that only a mother gives you. She assured me that an equally qualified doctor would be taking over all of her patients-as soon as that person was hired by the clinic. In the meantime, I should just continue taking my meds and when the new doctor arrived, he or she would run my blood work again and see where we stood.

I was still trying to figure out how to navigate my new life alone. My divorce was pending. My new beau was states away and visiting every few weeks. I was battling my previous ex for my children. Yeah that seems pretty confusing, so I’m going to break that fourth wall and just let you in on the family tree:

I was married to a man (I married him twice actually) and then after our second divorce, I married a woman. I left this woman to be with an ex boyfriend from years ago which my first husband hated. So when I left my wife to be with this man, my ex-husband sought custody of our kids. We have joint custody now.

Now that we’ve got that out of the way- let’s just say that shit got real. I was having nearly daily panic attacks that were stress related? hormone related? med related? The medication I was taking made me sluggish and I was steadily gaining weight even though I was barely eating. I started breaking out in hives nightly. I would send pictures of my fucked up face and limbs to my new SO-just looking for sympathy. I’m sure that solidified our relationship.

Six months later I still did not have a new endocrinologist. I called the clinic and they offered to refer me to a different clinic- which is of course out of my insurance network. I could go to a completely new health care system, but the best endocrinologists aren’t accepting new patients. At this point I am cursing myself for not becoming an endocrinologist, because apparently they are like fucking unicorns.

I finally get an appointment with a new doctor who- and I’m not trying to be racist here, but- I STILL cannot pronounce her name. I literally wait 10 months for an appointment with this woman. I am in her office approximately an hour and about a minute and a half of that is spent face to face with her. I (quickly) tell her all of the problems I am experiencing- including my inability to eat anything without feeling awful.

Did you know that the prevalence of celiac disease in patients with autoimmune thyroid disease is 4x greater than that in the general population? Yeah, I didn’t know that either.

This doctor assures me that all of the “symptoms” I am having are par for the course when you have an autoimmune disease. However, my “numbers” look great so we should stay the course. And then she disappeared through the doorway like the actual white fucking rabbit.

If this wasn’t bad enough- it was time for my annual again- the original gyno that referred me to the endo to begin with. I relayed how difficult the last year had been- my diagnosis, weight gain with meds, etc. I told her again that the problems with my menstrual cycle had not improved and that I was having horrific uterine pains with my period that was lasting 12 days or more at a time.

This woman took her gloves off after examining me and told me until I lost weight there was really nothing she could do for me. I started to cry- which I’ve never done in a doc appointment. I told her how hard I had been trying just to maintain with the meds I was on. She suggested that I go to a hospital and enter an inpatient diet program and then she left the room.

I’ve not been back to either doctor since then and to to be quite honest- I’m having a hard time trusting any doctor. I feel like I’m unworthy to be seen by a doctor at my current weight and current mental state. I know there are probably doctors out there that would care about the “whole person” and not just treat me like a set of numbers- there must be. But since the pandemic began you can’t get in to see a doctor anyway- I’ve just been sort of winging it.

I’m actually not taking any meds at all for my Graves. This is full disclosure here. I’m not purposefully being reckless- I just ran out at some point and didn’t want to go back to that endo. She told me my numbers looked great so I stopped taking everything. I started exercising and trying to eat better. I had a knee surgery that put me out of commission for the better part of a year, but I did drop most of the weight I had gained on my thyroid meds.

So today I feel that my “numbers” probably need to be looked at again. I am still having trouble with my cycle. I am still an emotional basket case at least one day a week. At least once every two months I have a complete melt down and threaten to leave my life altogether. But I’m seeing a therapist regularly. I’m eating much healthier. I’m moving my body every single day in some manner. In a lot of ways- I’m taking better care of myself than I ever have.

Don’t read this and feel empowered. This is not the way.

I need to find another doctor. I need to make sure that I haven’t swung into Hashimoto’s Disease. I need to probably have my thyroid removed.

I threw a giant fruit bowl at my fiance last week and while I was cleaning up the disgusting aftermath I thought about maybe finding a new endocrinologist. Then I poured myself another glass of whiskey- took an Advil, a Benadryl, and went to bed.