Disability and the Doctor


In network.

My favorite phrase right now.

My mother is one of my favorite people because she never taught me to fear much. I have a very poor memory- it is my greatest strength and my greatest burden- from what  little I can recall my mom was scared of most things but never taught me why. I see kids and moms every day in a dynamic where the mom is clearly instilling her own fears into her child. The ONLY thing I remember my mom saying to be scared of was small-towns. She was terrifying in her stories of what could happen in small-towns. If she saw a corn-silo above all other buildings she would tell stories to make the skin crawl.


So, I moved to the smallest town ever and brought her fear with me along with some clothes.


I have a really hard time with doctors. I know lifetimes more than them about my body so I mostly don’t want them to talk to me- or about my being, but I feel like my body is this huge science experiment no one knows anything about, so it takes a village to figure it out and I enjoy their thoughts; but my knowledge is far superior than theirs about my issue and everyone needs to fully understand that before a conversation on the topic can be had. Add this to the dramatically Hitchcockian phobia of mine and I am not too trusting of the medical professionals in our town who are all extreme ableists.

The other day I read something about how disgusting it is when ableists tell people to risk their health for love and I might have freaked out a little. I think I totally risked a lot of my health for love and I might totally have an ableist mindset on that issue, if I can, which I guess I can.

Risk everything for love. Always.

I had a great set-up for medical care in Chicago. When I met Ryan he had told me bits and pieces of what Thomasville offered for my health but I should have researched it for myself because Ry had no idea what I needed but I didn’t care to research and I did not care what the research said, because: RYAN!!!!!!!!!!

When I first moved to Georgia I was in a zombie state of shock. I completely forgot my health existed, which with my disease I can’t forget it. My mom and Ry remembered it and I was able to see the neurologist and a general doctor in town but I didn’t really feel comfortable with them, but at that point in my life Ry and I could barely get transportation to go 2 blocks to see the doctor in town so “real” doctors were just a hoop dream.

Lately we have found ourselves in a position to find a neurologist I am more at ease with. We are going to Mayo in Jacksonville and we have transportation… and I’m in network and who wants champagne!

Since I don’t tend to appreciate doctors I was looking into alternative medicine while Ry and I were doctor hunting. Turns out there’s a lot of people out there who are really against it.  I did not know that.  Medicaid and Medicare will not cover alternative medicine.

I have really bad headaches. No one knows why. People like to guess. I assume it’s too many years of IVIG and I don’t know how to chill. But I feel doctors aren’t really interested in helping me find the root cause of the headache; they would just rather treat the headache with a pill.

But before Ryan taught me to take it down a notch, I was a big fan of taking Fioricet with champagne because no one has time for water or pain when there’s an event that calls for a fabulous dress to wear. My mom suggested now may be the time I try something new for the headaches instead of pain meds.

Sounds plausible.

40 percent of adults choose alternative medicine on the reg. I’m willing to bet the people speaking out against alternative medicine really need to go and see a chiropractor, which is considered alternative medicine still.

Well, we are back from Mayo. It was adventurous. The doctor was not annoying. I appreciated her. I am diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy but I think everyone just kinda knows that’s a lie. A beautiful lie. We all want to believe. It’s our coping mechanism.  The doctor said I could have CIDP but it’s not likely. No doctor ever knows what it is but they can rule things out. I unfortunately got sick so young that the disease affected me differently than it would an adult, plus, not much for CIDP was in use by medical professionals at that time.

I had to have an EMG done while at Mayo, which I’m no stranger to but Ryan has never seen me have one done.  We were late to the EMG appointment because before the pain I had to see Beauty and the Beast… and our hotel had made us check out and we had three hours before the appointment. Mayo in Jacksonville is a beautiful hospital but not as easy to navigate as it should be. The signs dedicated to helping me find my way were very unhelpful and the people dedicated to the information desk were even more-so. I brought my anger stone for this purpose and I believe a very sweet old woman was trying her best to use a computer to give us directions and I sped away from her in mid-sentence leaving Ry and the PA in quiet confusion to listen to her nonesene while I figured it out myself. I had no time for that. I made that appointment. My insurance wasn’t billed for a no-show. We didn’t have to reschedule. Sorry. Not sorry.

EMGs are not as bad as I remembered. This is speaking after roughly about 300 Brazilians.  As a child I remembered EMGs being the worst thing ever to exist. This time- it was just the worst. Electromyography (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons).

I like to call it the, “popcorn test” because your nerves sound like popcorn when you move.

The first part of the test is pretty ok. The lab tech uses electrodes to literally shock (not hard) your arms and feet as you lay on a cozy little hospital bed.  This part was fine. I think I wasn’t bored yet, that’s why. I was still thinking about the movie so I didn’t feel much pain. A few times I was caught off guard though and like a small child I was, “scared-hurt”

The second part of the test has to be done by a neurologist. Neurologists take hours to do anything. By the time he started his portion of the test I was beyond bored. I had things to do now. His portion involves the needles. I really doubt you can call them that because they are so small but they stab. They stab thy skin and again it doesn’t as much hurt as it catches one off guard. The hardest part of this test is they want you to relax and then contract on demand while they shock you. I’m tense at all times. Probably because of this but… I had a really hard time staying in a relaxed state. That was unquestionably the only hard part of the test.

I don’t really like hospitals and ignorance upsets me to a point of no return so I don’t really go to neurology appointments unless I’m forced by my love for someone. Lately, I go because I think Ryan would lose it if I didn’t take care of myself. He doesn’t eat tomatoes unless I force him. I can’t deal with that. But I still loathe going to the doctor with everything I am. I need incentives to go. I am very goal-driven. If I have a goal I will do anything happily. My goal in Jacksonville was never to go to Mayo. My goal was to have a great meal and see the beach. My goal was reached. Other things happened but my goal was scored.

No one I know likes going to the doctor. Never make going to the doctor your “goal” for the day. Make it a blurb that happened before the goal was reached.



Leave a comment


email* (not published)