Posted in Body Stuff

Part 2: I Am Not Invisible

The last time we chatted, here, I mentioned some questionable possibilities for my medical future.  I mentioned a month-long wait for a doctor’s appointment that would hopefully shed some light on my situation.  Well here we are, a little over a month later and things have been insane to put it mildly.

Here’s what I thought was going to happen.


Dr.:  “Hey your Rheumatic Fever is gone!”

Me: “Awesome do you have any ideas about what might be going on, on top of that?”

Dr.: “Yes, here is what we are going to do/test for…”

…And so on.

What really happened was this.


Two Doctors (After making me wait almost 2 hours): “We don’t know what those other doctors were talking about.  YOU HAVE NEVER HAD RHEUMATIC FEVER.”

Me: “….”

Me again: “Do you have any clue what it could be instead?”

Doctors: “No.”


I barely made it out of the office and to my car before I lost it.  I could barely breath I was crying so hard.  I. Have. Never. Had. Rheumatic. Fever.  How is that even possible?  I was diagnosed by two doctors!  I went to the second one to make sure the first wasn’t crazy!

I got home and could barely even get the words out when my partner asked me what happened.  I was in shock a little bit.  I held it together long enough to go to class that night but got stopped to get whisky on the way home and just got super drunk.  (By super drunk I mean 1 shot and 2 hard rootbeers on an empty stomach drunk).  Don’t worry.  I didn’t have to go anywhere the next day.  My mom texted me the next day asking how it went but I just couldn’t answer her.  I stayed home the next day, ate some hangover food, and dived into schoolwork to attempt at keeping my mind off of it.

I only told like 2 people over the next couple of days.  I can only compare it to experiencing grief.  I bounced around from feeling numb, to devastated, to so angry I started carrying my boxing gloves with me, just in case.  I had to keep ducking out of classes when I could feel myself about to spontaneously burst into tears.  I’ve only ever felt that lost a few times in my life.    It just felt like all the work I’d been doing for last 5 years had been erased.  A huge part of how I’ve dealt with my condition is through reasearch.  I always thought that I could gain control over it with knowledge and being more open about it with people.  I couldn’t wrap my head around it.  I didn’t what I was doing, or where I was, mentally.

I did the only things I how to.  I went into what I refer to as laser focus mode in my work, starting some new stuff.  I just felt that this big of a shift called for a change in artistic direction.  I’d had some pieces floating around in my head for a while but I put aside what I was thinking about and went for the new stuff.  I’m actually really excited about it.  I know most of you that read this are probably my fb friends so you’ve seen the work I’m talking about, but just in case this is reaching people outside those that feel obligated to listen to me, here’s a link to my site.

Over the next couple of days, I started calling my rheumatologist’s office every day to see if I could move up my next appointment.  We’d already made one to talk about what happened at the previous one (different doctors) but it wasn’t going to be for another month!  Luckily, they were able to squeeze me in yesterday.

I got some confusing news.  She told me that, “It’s probably a combination of bad joints and possible fibromyalgia.”  That was it.  She said there’s not a specific test for that but said for treatment she could sign me up for physical therapy.  I guess if I do have fibromyalgia, it’s mild enough that I don’t need the medicine you see on tv all the time.  I opted out of the physical therapy; I think I will just try some of it on my own.

I instantly felt a sense of relief, even though it was just a probably diagnosis.  I wasn’t just in the nothingness anymore.  I can’t image what I would have done if I would have had to go on with that feeling for a whole month.

Honestly my first instinct was to latch on to that probably.  Being able to put a name to my condition gives me a way to control it.  I can do research to my heart’s content and even look for ways other people deal with it.  But after talking it over with my partner and doing a lot of thinking, I realized that, 1. he was right and I don’t have to care if other people think I’m legit or not.  And 2. It might be kind of great to ride the in between.  I do have something to go off of if I want to research what helps other people with similar symptoms, but I don’t have to take any crazy medications or get blood work done all the time.  I can just do my thing and deal with it how I see fit, not worrying about a label defining me.  Maybe one day I’ll get a more finite answer, but for now, I’m free.   😀



2 thoughts on “Part 2: I Am Not Invisible

  1. Hi! I haven’t read much of your blog, but when I saw this post, I was shocked… Because my little 8-year-old sister is going through something VERY similar. She was diagnosed with rheumatic fever a couple weeks ago… But then went to a different doctor the other day, who doesn’t think that she ever had rheumatic fever, but has no idea what she has. They’re doing every test they can possibly think of.

    I also have chronic illnesses (Transverse Myelitis, migraines, and Crohns Disease, plus some undiagnosed stuff) and I am also a bit of a medical mystery, myself. I hope you find some answers!

    Anyway, I thought it was so weird (and kinda creepy) that I happened to randomly stumble upon your blog, and this is so similar to my sister’s situation.

    1. Thanks for the kind wishes! That is really weird. I’m sorry your little sister is having such a hard time, especially at such a young age. I really hope your family can find some answers as well.

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