Surprise! You’re Disabled – And Other Fun Party Tricks
So, I figured I’d use this forum to break down my MOG Antibody Disease (MOGAD) journey in great detail. Because, lucky me, I now have to jump through some special hoops just to get my meds shipped to North Carolina. Ain’t life grand?
The Onset: A Rollercoaster with No Seatbelt
It all started right when I was mid-breakup that hit me right in the feelings (yeah, with “Old Lisa”). One of those relationships where you think you’ve got it all figured out—until life decides to slap you upside the head with a plot twist. This was about four years after losing Donna, so yeah, emotions were already running hot.
I was always exhausted. And I don’t mean the “stayed up too late binge-watching Netflix” kind. I mean the “my bed and I were in a committed relationship” kind. Every muscle ached, and I was wiped out 24/7. Doctors thought it was Lyme disease because, of course, I’m from Maryland, where Lyme disease is practically a birthright. But when the tests came back negative, the symptoms just—poof—disappeared overnight. Just like that.
Great, right? Nope. Because then, clinical depression showed up like an uninvited houseguest who won’t take the hint. Zero energy, zero motivation. Therapy blamed the breakup, it being the grand finale of a long series of emotional gut punches. Losing Donna, family fallouts, and then “Old Lisa” dumping me. That’s enough to break a man. And just as suddenly as it arrived, the depression bounced. No logic, no warning—just vanished.
Then came the headaches. One day, a sharp pain hit me right behind my left eye. I figured maybe I needed new glasses or had spent too much time appreciating the finer details of the female form. But then my vision started flickering to black. Since I used to work at Hopkins, I went straight to Wilmer Eye Clinic, hoping they’d have answers.
Turns out, timing was on my side. The specialist had just come from a lecture about this rare-as-hell condition called MOG Antibody Disease. She looked at me and said, “It would be wild if my first case was this, but… you’ve got all the symptoms.”
Only two hospitals in the country knew about MOGAD: Cleveland Clinic and Hopkins. My blood was shipped off to Cleveland, and when the results came back? Ding ding ding—positive! Fantastic. I won the autoimmune disease lottery.
Living with MOGAD: A Never-Ending Science Experiment
The Work Hustle
Steroids got my vision back, but they also made me pack on weight like I’d been living in a Dunkin’ Donuts. And MOGAD? Oh, it didn’t play fair. Most people get flares that go dormant for months. Me? It was a full-time job. When I backed off the steroids, the exhaustion hit me like a ton of bricks. I was guzzling 3–4 Red Bulls a day just to function, scheduling meetings around my nap schedule like a goddamn toddler.
Then, the skin irritation started. It felt like I’d rolled around in insulation or decided to sunbathe on a bed of fire ants. One day, my HR manager leaned over during a meeting and whispered, “Are you okay? You’re rubbing your ribs again.” I told her I wasn’t stressed, and she gave me a look that said, Are you out of your damn mind? Apparently, running a regional meetings, dealing with my (asshole) VP, implementing a new call center, firing a manager my VP wanted me to fire, doing employee reviews, and finalizing the budget was, in fact, stressful. Who knew?
The same stress that got me to the top of my career was now the thing ruining it.
The Reality Check
My dad, whose entire career was working for Social Security reviewing disability claims that had been challenged (having to quote law as to why or why not they should get it) told me: “Dave, you’re disabled! You can’t hold down a 9-to-5 job anymore. Trust me, I know the laws! Apply for disability!”
So, I did. And boom—approved on the first try. Turns out, when you’re truly screwed up, the system actually works.
The Treatment Hustle
First, they put me on a popular multiple sclerosis medication as what I have (demyelination of the nerves) is very much like MS. It was the popular Ocrevus you see adds for on TV. It didn’t work. Then, during one hospital stay, they did a plasma replacement, and I felt like Superman. That led to a biweekly immunoglobulin IV treatment—until insurance went full villain and denied it. Because, of course, the treatment wasn’t FDA-approved. “Okay, then give me something that is FDA-approved,” I said.
“There is nothing,” they replied.
Great. Love that for me. But once hospitalized I was able to get the treatment for the remainder of the year…and this became the cycle of me visiting the hospital every end of the year!
Then came the logistical nightmare: How the hell do I go cruising on Ohana if I need a nurse for treatments? After a year, they switched me to a subcutaneous injection version I could do myself (Blog picture.) Jackpot! The meds were $10K per treatment, but since I had no reported income, the pharmaceutical company has a program to cover the cost. Rich people problems? Not mine. The specialist and pharmaceutical supply company also found a way to get it approved by insurance every year now too!
I then signed up for a double-blind drug trial for a treatment that would be a simple shot I gave myself weekly. Got the placebo. Ended up in the hospital—again. But that let me access the real drug! And… it also didn’t work. Back to the hospital. The nurses at Hopkins practically threw me a welcome party at that point…cause I am kinda a fun sick person. Drove them crazy as I know the hospital better then they did and kept sneaking off the floor to visit the Biomed Department, where some of my old colleagues still worked.
So, after all that, I’m back to my sub-q injections. But hey, this meant I could cruise! Or so I thought…
The North Carolina Drama
After my last breakup, I asked my medical supplier if they could ship my meds anywhere, I went, knowing I could now get up and GO! “No problem within the U.S., but internationally? Nope.” They said there is a workaround to getting shipments needed for international shipment: request multiple months from insurance company in advance. Not easy, but doable.
Fast-forward to last week when I called to confirm my shipment to North Carolina. Surprise! They couldn’t ship out of state without transferring my case to a North Carolina pharmacy. Bureaucracy at its finest.
To play it safe, I have stretched my last 2 treatments this month to 11-day cycles instead of weekly. Today’s my last treatment—so fingers crossed, I get my next shipment in time. Otherwise, it’s going to be a real interesting week visiting my friends at Hopkins AGAIN.
Where I Stand Now
Physically? I’m healthier than an ox—just with a few quirks but all getting less and less as I go longer from my hospital visits:
Balance? Still working on it. If I stumble after a few drinks, I swear I’m not drunk. My body’s just on a different page…very frustrating how very little liquor affects my stability.
Energy? I tap out earlier in the day. Before, I could renovate houses from 6 AM to 8 PM. Now, 3 PM hits, and I’m done. Same goes for drinking—hangovers hit like a freight train, taking a lot from me. Fortunately it hits me hard enough that I remember and drink a lot less at parties/events.
Brain fog? Corporate job? No way. Even a bathroom renovation was too much. That’s why I’m not tackling the lithium upgrade on Ohana—I started planning and have to fight falling asleep from thinking too hard.
The Big Picture
I’m finally free to leave the Chesapeake Bay! There are still some small kinks to work out with my meds, but worst case, I’ll have my sons ship them to me. A cute first mate would be nice, but hey, Ohana and I can handle things solo. And I’ll always have my blog to talk to someone—whether they like it or not.
