The Hair Perv: Chronically Misunderstood

In the fall of 2016 my PCP thought I might have pseudotumor cerebri. One of my mom’s coworkers daughters had this and went to see a neuro-ophthalmologist, so we decided I should see him and figure out if I actually had pseudotumor cerebri or not.

This was probably the weirdest doctors appointment I have ever had. To start it off we were shuffled between five different rooms to do a bunch of eye tests. No one explained anything or said why I was doing the tests. When we finally saw the doctor he looked at my eyes and said maybe five sentences to me. He told me I needed an MRI and he would give me a prescription for torodol. After four years (at the time) of chronic illness I was kind of offended that he thought  had never tried torodol. It’s pretty much the first pain med doctors try when you first become sick.

After I saw him there was one more eye test I had to do. An older man was running the machine and was getting everything set up. To be honest I don’t remember 100% what the test was for since the day was such a whirl-wind. The man had to put some sort of salt on my scalp and then put electrodes over the areas of salt. I had rather long hair at the time, and my hair is pretty thick. As he put the electrodes on my scalp he ran his finger through my hair and said, “I’m enjoying this way too much.”

“I’m enjoying this way too much”

What the hell is that supposed to mean? I was sixteen and that comment was incredibly inappropriate, plus my mom was standing right there. I have no idea why he thought that was an okay thing to think, let alone say. I was there to find answers to my chronic illnesses, not be hit on by some pervy old dude.

We did the MRI and found out I do not have a pseudotumor, so needless to say we’ve never been back. In those 4 four years pervious to that appointment no one would order an MRI for me, so at least I got that out of this mess.

Oh the things we go through to find answers to our chronic illnesses!

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I Don’t Know

“I don’t know” can be devastating words to hear or they can be refreshing when you have chronic illnesses.

When you don’t have a diagnosis or a good treatment plan, hearing “I don’t know” over and over again is exhausting and disheartening. If specialist after specialist doesn’t know, then who does? You start to wonder if you’ll ever find answers, or if your health problems will forever stay a mystery.

On the flip side, being lead on my cocky doctors who tell you they can fix you, but actually don’t know whats going on can be just as exhausting. In my own journey, time after time empty promises kept being made, but I wasn’t getting better; in fact I often got worse from side effects of the medications. I do think some of the doctors I’ve seen truly believed they could help me, they just didn’t know what they were getting themselves into.

I’ve only had one doctor honestly tell me they didn’t know. He was a gastroenterologist who is incredibly intelligent and had diagnosed me with abdominal migraines 2 years prior to this visit (this visit was last fall, September maybe?). He was very honest and said he was going to have to research and read a lot because he didn’t know what to do and he didn’t think it was abdominal migraines. He specializes in abdominal migraines, so he knows what he’s talking about as far as that goes. Although it’s hard to hear that someone as smart as him was stumped by my situation, I appreciated his honesty and found it refreshing. I have so much respect for him, and even more now that he was able to admit that he wasn’t sure what is going on with me.

I still don’t have a diagnosis and March marks officially five years of searching for one. It’s frustrating, but we haven’t given up quite yet. I have my electrophysiology study scheduled for the 2nd, and I’m supposed to be starting botox this month. I’m also starting conseling this week (after a mess of appointment cancelations on their part, but thats a whole other post.) We’re looking into seeing another endocrinologist, so hopefully all of this will lead us somewhere positive.

What do you do when doctors and specialists don’t know what to do? I don’t have any great answers for that to be honest; since this is all about honesty. The one thing I do know is, don’t give up. Go to more doctors, try more medications, look into more diseases/syndromes that you could possibly have. Test and re-test for things. Ask questions and demand answers. Self-advocay is a must when you’re chronically ill and it isn’t always going to be an easy thing. You’re probably going to disagree with a doctor at some point, and that’s okay. Choose what’s best for you and your body.

I personally would rather hear “I don’t know,”and try to look for more options than have someone lead me along when they really can’t help me. What are your thoughts? Would you rather be told the truth or have them try treating you when they aren’t sure what they’re doing?

Lots of Love,

Alyssa

Chronic Illness and Career in Medicine

From the time I was eight I knew I wanted to go into medicine.

Then I got sick.

I’ve lost count of how many doctors I’ve seen, but a lot of my experiences have been bad, especially when I’m admitted to the hospital or in the ER. Going to countless doctors and not getting much help made me lose my passion for medicine. I never want to make other people feel the way some medical professionals have made me feel. And yes, I could be the one to do things differently, but I’m not so sure I want to.

Maybe part of this decision to not go into medicine,  is because I’ve gotten older, or because  my physical health could make a job where you’re on your feet all day extra exhausting. I also know that when I wanted to go into medicine I wanted to be a doctor, and that takes a long time and a lot of school to become. I have a huge respect for nurses, but their job just doesn’t sound appealing to me after watching so many of them through my own experiences.

When I was still going to school I took all the medical classes I could. I was in medical terminology, health science, anatomy and physiology, and psychology. I even took career portal into health science in middle school – I was dedicated. This fall should be my senior year of high school, but since I had to leave I’m getting my GED this semester, and taking classes at my local community college in the fall. Ironically I’m going from being behind my peers to being ahead of them, but this is the only way I can stay on track.

I’ve also seen lots of middle aged health care professionals who seem to hate their job. There are a lot of people who start out excited and wanting to make a difference, but they get worn down after time and no longer enjoy it. I don’t want to be the angry, bitter nurse who snaps at patients, or the doctor who doesn’t listen and just writes a prescription for pain killers. You never know if you’re seeing someone on a bad day, but I don’t want to make anyone else’s day worse, like some of them have done to me.

I’ve found a new passion and I know exactly what I want to do now, but part of me is sad that my life-long dream has just fizzled away. It’s hard to get excited about something when it hasn’t helped you. People change and grow over time, so maybe this is just me changing and growing. I’m honestly not sure. This is just one of many examples of how Chronic Illness really does affect every aspect of our lives.

Lots of Love,

Alyssa