my life fell apart & now i'm starting a blog
went to the ER, got fired, made a mixtape, and now i'm here
A month ago I got diagnosed with MuSK Myasthenia Gravis (MG) and then less than 48 hours later got fired from my full-time job (and lost my health insurance).
Not sure if I should’ve come up with some long and artistic intro, but that is what happened and here we are.
What This Means
MG is an autoimmune neuromuscular disease. Essentially, as your muscles are fatigued, an antibody attacks the protein that helps your nerves talk to your muscles. The more muscles are used, the more muscle weakness I will have. It gets worse throughout the day. MuSK MG is a rare form of MG that is considered more serious and will likely have more generalization and faster progression than normal MG. MuSK MG primarily influences bulbar muscles, which are used for talking, breathing, and eating, as well as vision muscles. MuSK MG also tends to be treatment resistant.
As many of you know, my dad has had ALS for 31 years. Me having an eerily similar condition to ALS is just a coincidence. And while ALS is also a neuromuscular disease, the outcomes are different. With ALS, the nerves that control voluntary muscles stop working entirely, and it usually starts in the legs. MG symptoms improve with rest, so I won’t be wheelchair bound or have muscle atrophy like my dad.
It is hard to know what my life will look like with MG. It is known as the “snowflake disease” because every day and every person is different. My friend actually went to a lecture at MIT last week that talked about how MG is hard to have clinical trials for because of how much the symptoms vary. For me currently, this makes it very hard to know what is a legitimate symptom and what is psychosomatic. More on that in a later post.
I don’t know what my MG will look like, but based on what I’ve read, the next 2-3 years will be the most telling as far as what the rest of my life looks like (if my symptoms don’t progress by the three year mark, they likely never will). There is a chance, albeit a small one given the type of MG I have, that I will never have symptoms beyond occasional double vision at the end of the day. There is also a 20% chance I will be on a feeding tube and a 50% chance I go into myasthenic crisis, which is when your breathing muscles kinda just stop working and you typically have to be intubated until they can fix it. Those statistics are hard but I am feeling okay about them.
The Diagnosis
Here’s the not so quick story of what led up to the diagnosis.
I think I’ve had minor symptoms for a long time, even looking back to high school in subtle ways. In college, I once went to the student health center with a piece of paper filled with things that I felt could be symptoms of something. I swore I had something autoimmune and felt like a crazy hypochondriac when nothing came up. I had to drop out for a quarter at one point because I was so exhausted and my sleep schedule was so bad. Maybe it was a symptom and maybe it wasn’t. It was probably a mix of everything. Anyway.
Since about the middle of January I started really feeling like I was going to pass out. I had had some pretty stressful months leading up to this and thought I was just tired from working two jobs. But this started to feel different. I was going to my car on my lunch breaks to lay down just so I could try to feel better. One night, I was very tired and felt my knees almost buckle under me when I walked down the hallway to brush my teeth. I started drinking a lot of liquid IV and researching conditions like POTS. At night, if I wasn’t at my second job I was sleeping pretty much as soon as I got home. I was planning on making a doctor’s appointment to talk about these symptoms at some point, but I thought I just wasn’t handling life well and would be wasting my time and my PTO.
Throughout all of this, I noticed my vision would be weird occasionally. I wasn’t concerned about it at all because I thought it was just a byproduct of feeling like I was going to faint. But it finally got to the point where feeling like I was going to faint was less of an issue than the actual vision problems. I started mentioning to my coworkers that the lights were bothering me, or that I could see two of them. Before this, I couldn’t quite call it double vision, I didn’t have the words. It just felt like my vision was lagging somehow. I know now that this was because your brain is able to correct itself remarkably well. But driving home that night, I was sort of testing it and realized that all of the road signs were doubled. That was weird, but I just went home and went to sleep.
The next day, I was driving 10 minutes to my sister’s apartment and the vision got worse. It was clearly doubled now, and my depth perception felt like it was screwed up. I couldn’t tell how far I was from a stoplight and visually, I couldn’t tell what lane I was in or where other cars were (Thank God for my car’s lane detection system so I knew I was okay). The lines of the lanes, rather than looking parallel (||) looked like an X.
After that, I felt like something was clearly wrong. Sudden onset double vision (or at least a sudden onset of it being that bad) is something to be concerned about. I kept feeling progressively worse and just felt like something was wrong. After a few hours of trying to decide whether to push through and attending a Valentines wine night just long enough to post an instagram story, I took myself to the emergency room. They did a CT and an MRI which were both clear, luckily. They sent me a referral for an ophthalmologist and I was sent on my way in the middle of the night.
I started Valentine’s Day in an MRI machine and ended it doing my taxes. Somewhere in the middle I gave my work crush my number and then had to leave work early because I was lightheaded. My work crush never texted me. Not the best Valentine’s Day I ever had.
That Monday I was at doctor’s appointments all day. First I went to my PCP to talk about the fainting symptoms. It was nice. I felt listened to. I then went to the ophthalmologist. I thought I would be there for like an hour at most, expecting to be told to reduce my stress or that it was unexplainable. I ended up being there for 4.5 hours. They were doing so many tests and putting so many lights in my eyes and I kept giving them different answers. I would look one way and see double and then another and be fine. I was worried they would think I was lying. Turns out, I was not lying but I was in fact exhibiting symptoms. The tests were trying to fatigue my eye muscles and it was working.
The eye muscle specialist came in and said she had two theories. Either an incorrect contact prescription or a thing called myasthenia gravis. They had already tested my contact prescription and said it was perfect. Womp womp.
Anyway two weeks later I went back to her for a follow-up. The test results hadn’t come back yet, and she said it was probably just anxiety. She said she didn’t think it was MG and only tested just in case. I got my test results the next day.
35 days, countless phone calls, and going in-person to Barnes later, I finally got an appointment scheduled. There are lots of other details in there that would make you lose some faith in the healthcare system, but it doesn’t matter. The appointment is in June. Since getting my test results, I still have not talked to a doctor about any of this* or started any sort of treatment (the results have been confirmed by multiple doctors personally and through MyChart though).
The test results were showing the level of anti-MuSK antibodies I have. To be considered “normal” is below 1:10 ratio. Anything above 1:20 is diagnosable. Mine is 1:160.
The day after my diagnosis, I was looking at my benefits at work to see if I had elected critical illness insurance. I didn’t, but if I had I would’ve gotten a $10,000 payout. Even though Google says it is a “serious diagnosis with a grave prognosis,” this made the diagnosis feel more real for some reason. Ironically, when I was electing my benefits a few months earlier I kept saying that it felt like I had to get every benefit because whichever one I didn’t elect would be the one that I needed. Oops. My OCD getting proven correct is a big theme throughout all of this.
*Technically they did talk to me about it over the phone. I don’t really count it because all they said was that if I can’t breathe to go to the hospital. Luckily this is a rule I already live by.
48 Hours from Hell
I was making cowboy caviar and got the results through MyChart while on FaceTime with my mom. I had been shitposting (and continued to shit post) on my close friends story about the test results. (see below)
That night, I quit my second job. Working so much was triggering my MG and it was getting tough.
I’ve always coped with humor but after getting diagnosed Tuesday afternoon, the gravity of it hit the morning (and middle of the night) that Thursday.
Thursday morning I felt essentially comatose. I was walking around blankly. I went to see my work friends and was eating a bagel a crumb at a time staring straight ahead. It was a rough morning. I texted my old therapist to set up an appointment to talk about it at 9:55 am. At 9:59 am, my boss called me to tell me they were ready for my meeting in the HR room. They had canceled this meeting two weeks earlier and said they would reschedule, so I apologized for missing the calendar invite because I didn’t know we had a meeting. She said there wasn’t one but that she was ready for me right now.
Missouri is a one-party state so I turned on my voice memo and started recording. I was afraid I would be too out of it to remember what they said so I wanted to be able to go back and listen when I was feeling better (no matter what the meeting ended up being about). From entering that room to her saying she was “dismissing me from employment” was less than 37 seconds. I just said okay. There was too much going on in my head and I couldn’t think. I was laughing on the inside because the timing is truly impeccable.**
They grabbed my keys and put me on the elevator. I turned my location off and drove straight to my parent’s house. 2.5 hours in silence. I almost drove myself to the hospital multiple times because I thought I might be going into myasthenic crisis. It was a panic attack. It was a genuine concern because crises can be set on by stress, so I was terrified that I was triggering one. If I started randomly feeling like I did then, I would go to the hospital. It was a horrible feeling. I counted down every minute of that drive.
When I got home, I ran inside and crumpled into my mom’s arms and violently sobbed. That was a low. My sisters came home that weekend to support me which I really appreciated. My best friend was home, so the next night we took the audio from the voice memo and the audio from the ring camera and I made a mixtape (listen here). It is not good and it took 5 hours, but it was more the spirit of the thing. I also made an album on my phone called “comically bad” documenting the entire journey and am putting them into a physical photo album.*** (see some pictures below lol)
Conclusion
If there’s anything I’ve learned through all of this, it is that the words “diagnosis” and “prognosis” should not rhyme. Saying I have a serious diagnosis with a grave prognosis makes it sound like I’m spitting a rap. Maybe that will be the second mixtape!
I have some other blog posts lined up, with minor progression updates, the positive things that have come from this, and random musings. Rather than stretching my actual writing muscle, I thought I should start out my Substack by just telling this story, since it is definitely the most influential 48 hours of my life thus far.
This post is getting too long so I’ll just stop it here. For now though, I am watching One Tree Hill, wearing matching nightgowns with my mom, reconnecting with old friends, and letting myself write to my heart’s content.
Love you all (& may the firm prevail) <3
**speaking of impeccable timing, the one nurse that was super helpful to me when my referrals weren’t going through GOT FIRED in the 4 hours between her messaging me and me messaging her back. This is not an important detail at all but when I called my sister and told her this she started laughing because, of course she got fired.
***I am keenly aware this is a defense mechanism, I wouldn’t let anyone leave me alone for a couple days because as soon as they left the room I would start crying.
