“I’m officially deeming you as a medical mystery. You have seen about every specialist I could think of and not one person has been able to give you a definite answer as to what’s going on. I’m not saying that because I’m giving up on you, but I have no idea what’s going on.”
I’m deeming you as a medical mystery.
That’s probably going to stick with me for the rest of my life, whether I find an answer to everything or not.
Should I be given a book deal now? Can I somehow show myself off so a doctor can use me as a case study?
What happens now?
More tests. More specialists. More “I don’t know”s.
This coming after my neurologist finally said "I don't think we'll ever find an answer, we just have to start treating the symptoms now." I'm sorry, what were we doing for the last 4 years? Since him saying that, I've only had blood work done and not even a follow up scheduled. So how are we doing anything at this point?
In the last four years, I’ve gathered up a roster of diagnoses and a list of symptoms that could be classified as a novel by now.
Each time I think I’m closer to finding out why everything is happening, the further I get from the actual truth. Almost every lab comes back in normal range.
“At least we ruled out the scary stuff.” The scary stuff to me wasn’t cancer, doctor. The scary stuff is the unknown.
Why am I having allergic reactions to water? Why do I throw up if I get cold? Why does food trigger anaphylaxis every other day with no rhyme or reason? Why does my mouth bleed when I cry?
If the biopsies came back telling me anything besides what it’s not, I would’ve been okay with that. But it didn’t.
I didn’t ask for this life of “why”. I can’t afford this life of “why”. I don't think anyone realizes how expensive it is to be sick, especially sick and on your own.
1,460 days. 48 months. 4 years.
I’ve lost my faith in religion. I started to get sick. I thought I fell in love with my person. I got engaged. I moved hours away. I found my career. I had my heart broken harder than I should’ve let it break. I’m falling apart in front of professional doctors and can’t find anyone to help me. I moved into my own place. I practiced different aspects of a variety of spiritualities. I went on dates and raised my standards and expectations. I set boundaries. I got lost over and over and over, both literally and figuratively. I found some answers to some symptoms but nothing that explains it all. Multiple biopsies, skin pricks, tilt table tests, thousands of needs penetrating my skin looking for veins that have been dehydrated for years. I've spent hundreds of hours in those awful waiting room chairs at every single appointment.
I can deal with the pain. I’m in pain every second of the day, I wake up in pain. I have allergic reactions to everything under the sun including the sun. I don’t know when the next sip of water is going to close my throat. And if I cry about it, my mouth bleeds and I end up choking on that.
What I can’t deal with is the gaslighting. The disbelief. The “I don’t know”s. The eye rolling when I go down the list of what’s wrong. The “how do you do it”?
I do it every day because I have to. I do it because it’s hard enough to find someone that believes you but those people still have no idea what is going on. I do it because nobody else is making living livable for me.
What other choice do I have?
What do I drink everyday? Liquid Benadryl with everything.
What do I eat everyday? Benadryl tablets with everything.
What do I do before I go outside, before I walk into air conditioning, before I shower? I take Benadryl.
Because I have no idea if I’m going to react, how I’m going to react and how bad it’ll be until it’s happening.