New Years 2024 Medical Year in Review Check-in

A year-in-review can take many forms. This one is a medical review of my personal situation, because I am aware that there are many newsletter subscribers, and some social media followers, who are here solely to follow this. Also, I’ve got some people who know me personally to whom a check-in is overdue.

Readers might also be interested in reading my professional year-in-review.

I’m breaking this into what are hopefully useful sections. Please jump to whatever makes sense for you. First there is the Abstract (1 min read). Next is My Health in Brief (7 min read), a sort of extended abstract.

Lastly, you’ll find Some Health Backstory (9 min read), which should bring the reader up to speed wherever they’re jumping into my more recent, and rather surreal, tale of health woes. This is for readers with a more personal interest.

Okay? Here is where I am as we begin 2024, hashtag still here.

Abstract (1 min read)

I turn 50 in 2024, and my current aspiration is to be here for that. I continue to experience the effects of malnutrition and unfortunately to collect additional painful things, most recently some severe nerve pain, to the extreme that at the end of November, I had an anaphylactic reaction to pain itself.

I’ve lost nearly 30% of my body weight due to gastroparesis, which we think might be but a symptom of one heck of a status migraine, one that has been going on for two years and is still so.

To manage the severe nerve pain, I take Gabapentin, which has cognitive side effects that add to those I already experience from malnutrition. And to augment Gabapentin, I take metered doses of CBD and THC, which additionally have cognitive side effects that make it hysterical to consider how I’m even able to hold my own Pac-Man glass of water without dropping it on the dang floor.

I’m actively working with a team that includes neurology, gastroenterology, a functional medicine MD, and others to figure out what’s going on, and to reign in the migraine that’s seemingly trying to end my life.

My Health in Brief (7 min read)

As of the time of this writing, medical consensus seems to be that I’m having the world’s worst migraine. Really. It’s a status migraine that has endured for two years and counting. By definition, a status migraine is a severe, refractory migraine that endures more than three days. In addition to severe migraine headaches, another aspect of this status migraine has been refractory gastroparesis (which is so-called stomach paralysis).

Gastroparesis is kinda causing me to slowly starve to death. So. It’s not great.

These days my inadequate diet consists primarily of prescribed Ensure shakes and saltines, plus tiny amounts of other proteins and simple, saltine-like carbs.

 

I can eat that specific little donut on the right, carefully, with a bit of planning, and not at the same time as Ensure or anything else. This is not a before-and-after photo to showcase weight loss. My autistic nature has had a hard time with my nutrition apps (not to mention so many nurses) celebrating my low weight while I’m suffering so gravely.

Last year, Fat-Erika was not starving to death, and that was a better situation. And last year’s weight gain, incidentally, was a result of some abrupt medication changes. Neither the celebrations now nor the shaming then have been appropriate.

There is a lot of judgment around bodyweight across the spectrum (yikes, no pun). I share the photo lineup in order to demonstrate that I have unintentionally lost a lot of weight. I am unable to eat enough to meet my nutritional needs, which is why I’m disabled by malnutrition at this point.

And I look really different. Because I have prosopagnosia, I actually have had a hard time recognizing myself since I look so different now than in the recent past.

I currently weigh about what I weighed in boot camp thirty years ago, although the ratios of lean muscle mass and other components were different back then. It’s not good. And we currently have no specific plan for the gastroparesis, which means this situation will continue to get worse, but we are very actively working on it to hopefully identify an intervention soon.

I was diagnosed with moderate malnutrition one year ago, in January 2023. The effects of malnutrition are cumulative and difficult. For example, I’m likely to lose all of my teeth in 2024 due to their demineralization. While writing this, I’m nearing the end of my efforts to try to avoid that, which included 27 dental surface fillings and two dental extractions, so much money and even more pain.

My teeth were healthy just eight months prior, as confirmed by x-ray. These declines are so fast, and the deprivations so very costly.

In March 2023, I had an unrelenting status migraine headache that went on for 22 days and required a hospital level intervention to abort it. That migraine headache also initiated a form of nerve pain, linked to migraine, which I first called a “tooth migraine” but which never ceased, in terms of dental pain.

 

Malnutrition can be a fast-acting detriment to health in my experience. Another addition or symptom which only began in mid-2023 was severe nerve pain. I did not initially recognize it as distinct from regular, albeit severe pain, since it first started with my teeth and face and I thought it was all dental pain.

Seriously, how could I possibly tell the difference between/among nerve pain, migraine tooth pain, and the pain of all the teeth demineralized and needing dental interventions?

It’s useful info to discern whether pain is nerve pain or regular pain (i.e. dental pain from demineralized teeth, for example), because regular pain medications do nothing for nerve pain, and vice versa.

Also, I can’t take any regular pain management medications other than acetaminophen anyway. Opiates completely stop my GI system, and NSAIDS are off limits for GI reasons also.

So, it’s Tylenol and prayers for my management of regular pain, no matter the severity. Nerve pain, I’ve since learned, is a whole separate mechanism. It responds to Gabapentin, CBD, and THC. Thus, that’s what we’re working with.

Oh! I did learn one other thing in life-threatening fashion about a month ago! On November 29, 2023, I learned that when severe dental pain stimulates severe nerve pain, and the two interact? (Did you watch The Perfect Storm?)

The human body can reach its limit. Mine did! I had an emergency dental extraction, and the dental pain was, in my experience, 5% of the pain. The other 95% was severe nerve pain. I sorted it because it was shooting towards my ear, and in this instance, it was only on my left side, same as the dental emergency.

At times I think I lost consciousness from that nerve pain. I mean pain at that severity level. I’m not talking “ow, my tooth hurts.” I’ve previously had five root canals. I know what dental pain is. This nerve pain? Let me just say that I could not have lived with it another day at that level. 

I told Rachael that sentiment while she was dealing with me, screaming and crying in pain…

And then it was a difficult emergency extraction of an upper molar with three roots, all of which were shaped like cartoon fishhook barbs. This is basically the raw material of a nerve pain nightmare: dental emergency (cause of regular-pain and inflammation), followed by maximum severe nerve pain, followed by the most complicated emergency dental extraction, a procedure which additionally caused more traumatic injury/regular-pain and triggered more nerve pain.

Two days after that extraction, while resting in bed, I felt my airway suddenly begin to swell. Then my mouth and lips joined in. Recognizing the onset of anaphylaxis, I got out of bed, took 50mg of Benadryl, assessed my vitals, looked in the mirror, noted the airway swelling, and injected 0.3ml EpiPen auto-injector, noting the time. Then, I called for a ride to the Emergency Room.

I then went live on the Autistic PhD facebook page, because there was a small but not insignificant chance that I could die, and I wanted a witness to my efforts and record-keeping.

 

The emergency MD said I probably had an anaphylactic reaction to pain itself. Who knew that was a thing?!

I also have severe nerve pain in my fingertips, the bottom of my feet, my teeth and face, and possibly my stomach itself, a fact which I resent a bit since that stomach is barely working anyway, lazy ass stomach. I’m seeing many caring, thoughtful doctors, including a GI MD, a functional medicine MD, and a neurology provider, and they are not working apart from one another.

To manage the nerve pain, itself just icing on the worst cake I’ve ever had, right now I just titrated up on Gabapentin, and I’m also using doses of CBD and THC. All three of these have cognitive effects that, coupled with the effects of malnutrition have made life laughably nearly impossible to negotiate in the short term.

Nobody (including me) thought I’d be able to tolerate full dose of Gabapentin. Like many autistics, I have a long history of my brain being “extra” when it comes to responding to medications. For example, I have taken as little as 1/10 of a dose of something and had therapeutic levels of that medication in my bloodwork.

And I’ve had very bad, adverse side effects from numerous medications, which we were all expecting me to have with Gabapentin. To our surprise, I’ve had side effects with Gabapentin (most notably vertigo and cognitive side effects) but they seem to be subsiding.

It’s great news that I’ve been able to hopefully tolerate the full dose of Gabapentin. And it does seem to somewhat address the severe nerve pain, at least when taken along with CBD and THC doses.

These are short term measures until the source of the nerve pain, thought to be an enduring status migraine, can be more properly handled. That is being figured out by my thoughtful, caring neuro provider in conversation with a team of neurologists who find my case interesting.

Overall? I’ve been grateful for the understanding and generous support I’ve encountered in most facets of my life, and disappointed yet not surprised by the ableism encountered in a few others.

Looking Ahead

The goals right now: trial different migraine meds to try to deal with what might be a sustained migraine response (namely, a status migraine that’s kinda been going on for two years). Also need to see whether this lets the gastroparesis chill out, so that I can eat more. With better migraine management, nerve pain might lessen also. This all should allow me to increase dietary intake.

Questions still unanswered: Why teeth demineralized so fast, since I am taking supplements and Ensure? Is there a malabsorption issue presently unidentified, or another unknown mechanism? How much bone density have I lost? (DEXA scan is scheduled for later in January 2024.) And then even if we get better migraine management, the stomach might not just stop doing gastroparesis, so is there a way to sort of jumpstart the stomach, from a GI perspective?

And heedless of all the nonsense I am determined to work on completing the things that I’ve said would be completed in 2024. If I am alive through the upcoming calendar year, the projects which are currently expected to be completed will be!

If I’m not here-in-a-year, kindly link to this note from the obituary, because I’d like to be remembered for my self awareness even amidst the ableism present in systems not designed for the thriving or even the presence of neurodivergent people like me.

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Health Backstory (9 min read)

Although I’ve been disabled by migraines and GERD for decades, things began to shift for the worse two year ago. Then abruptly midday on September 7, 2022, my stomach mostly stopped working.

Since that fateful day, I’ve been diagnosed with gastroparesis after a gastric emptying study, and I haven’t had a proper meal since September 6, 2022. Supper was some chicken wings Rachael cooked up in our new air fryer and they were delicioso!

Honestly, I was not a healthy eater before Sept. 7, 2022. My annual physical and lab work have always been fine though.

My overall health history: migraines, knee injuries/surgery, lumbar back injury/pain, GERD. These are all disabilities related to my military service from 30 years ago.

So-called social history: I am a former smoker, quit several years ago. I used to occasionally have a drink (i.e. 1-2 drinks/year). I didn’t use other substances. My finances are fine. I’m in a safe home with the best spouse in the world for me. My physical activity is that I walk around the block or walk inside a store daily unless I have a headache. I can’t do more activity until I can do more intake.

So-called family history: Yeah, no. Sorry. My birthfather was adopted, without records, and he’s deceased. My birthmother is still living I believe but we are not in touch. From what I know, my father died at age 74 from lung cancer, and my mother’s health is unremarkable and consistent with her age.

Since Sept. 7, 2022

I have only chosen health and wellness at every turn and in every hour. All I do is strive for health and try to maximize my chances at being here-in-a-year!

New shit since Sept 7, 2022: gastroparesis, intractable abdominal pain, malnutrition (and its effects such as weakness, tiredness, possibly losing all my teeth, likely bone density loss, etc.), severe nerve pain, tooth migraine that began in March 2023 and ebbs and flows but never goes away

Current diet: Other than the specific formulation of Ensure shakes the VA ships to our home by the case, I can eat scant other things additionally, in tiny portions, in consultation with a registered dietician and GI doc. (Side note: Neurodivergent folks reading this might be interested in this article about collecting related things.)

I can eat things such as a small number of saltine crackers, or small servings of protein with very minimal fat, as long as I did not just eat or drink anything else. I have to watch the volume, even of water. And I only drink water.

Of course I also take vitamins and supplements. This is the best I can do. My dietician commended my efforts in her note from our recent appointment, which I appreciated and highlighted in the screenshot below, but it’s not enough.

 

I’ve come to experience more pain and losses this year than in any previous year. [LINK to the sad guitar story about grief and loss once it is up on the site]

 

Can you even imagine pain so severe that your body just literally decides, “Nope! Enough of this!” And then it initiates anaphylaxis, to pain itself?!

 

 

Since some of these situations are potentially life-threatening, I do have to say that if this does not end my life, there is a book in here, friends. I will want to share the story of the migraine that almost ended my life. (Imagine?!)

Given the condition I’m in at the time of writing this article, I would just love to be in a position to retrospectively tell that story someday, from a place of improved health, adequate nutrition, and managed migraine situation. That would be super.

Because right now? It has been 16 months since I have had a proper meal. And given everything else going on at this point, I am now, I do believe, officially operating at 1%.

We considered Aimovig to replace my current migraine preventative meds. The concern is that there is a certain side effect risk with Aimovig that could require surgical intervention if I experience it. And given my history of often experiencing the “rare but serious side effects” to meds, coupled with an already crippled GI system, that outcome would be too probable. We collectively decided that I cannot risk it.

This is unfortunate, because it really is looking like many of my critical health issues are migraine-related, which remains incredible to me. But we will continue to work on this! If you know me personally, then surely you know me to be among the most fightiest people. Rachael and I are on this. If there are solutions to be found, we will find them.

If an author were writing a novel based on the true story of my life over the past year and a half? Any editor would have already kicked back this script and told the author to knock it off. It’s too ridiculous. Nobody has all these things go wrong and just keeps swimming.

My present goal is here-in-a-year, because there are too many variables for me to have more grand aspirations than this right now. But I’m thinking that my life isn’t at its end just yet. I am hopeful, and I’m doing absolutely everything I possibly can to see that I am here-in-a-year.

A day in the life?

Right now? My life is so ridiculous. You know, at my last primary care doctor’s visit, they signed the form for the 1-year disability parking permit, rather than another 6-month permit, as we all are realizing that this is not just going to let me go.

So we use that for me, and I sometimes go to the grocery store with Rachael, so that I can walk for the exercise. I try to push back feeling weird about that, and just do it as much as I can. My dear friend Paula, a retired nurse, reminded me last summer that at my age, if I don’t use it then I really do risk losing it, and I don’t want to lose more cardiovascular health than I already have.

So, I push as much as I can. It’s silly. My Garmin watch mocks me by lowering its expectations of me every day. “Today you should walk 1150 steps… okay how about today you should walk 1120 steps…” etc. The only character who expects less of me than Garmin watch is my ophthalmologist.

But I do the little bit of walking that I can do. My first food of the day is five Saltines. Then pills. Then water. Then an Ensure. Then I actually do have 8 ounces of coffee. This amuses me, because I was always known as the ADHD/caffeine junkie around campus. My students would regularly bring me either a coffee or a diet Mtn Dew.

 

Today, I’m grateful that I can have the 8 ounces of coffee. I took notes on GERD symptoms with and without that eight ounces of coffee, since I did zero coffee for a couple years, and the 8 ounces in the morning does not make a difference.

It is acidic and a stimulant, so there are both GERD and migraine reasons to pay attention to it. For this reason, it’s measured and I have it around the same time every day. All jokes about not being awake until the coffee is done can stand because 8 ounces of coffee won’t wake up anybody, I assure you.

For the rest of my day I try to do whatever I’m hoping to do. If there’s no migraine headache? Cool. I will try to think, read, write, do whatever I’m working on. Soon, I will try to eat or drink something else, in a tiny portion, following all the rules from the dietician. I’ll do this throughout my boring day, going to bed for naps (not usually to sleep, but often needing to lie down).

By the way, I could never drink Diet Mtn Dew today. I couldn’t tolerate the carbonation, but also the taste. My diet right now is all the nature foods that I used to watch Rachael use to construct her meals. Now? The things I used to consider food don’t even taste like food when I’ve tasted them more recently. It’s interesting to me. I even had a bite of a Reese’s Peanut Butter Cup, once my favorite candy. Guess what? It’s kinda gross.

Whatever. I put my custom blue disability access sticker on a Ninebot scooter that has a little seat, and I use this to help me get around distances greater than I can walk. We also have a proper mobility scooter but I kinda like this one.

 

That’s my life sans drama. I wish it would remain as boring as it can appear when I am describing Ensure shakes and cute stickers on scooters.

The reality is that I’ve had some big emergencies this year, and I have an overall health situation that has no fix, is getting worse, and doesn’t suggest excellent outcomes until or unless we can stop the two-year-long migraine and/or otherwise get the abdominal pain to let up and the gastroparesis to back off a bit so that I can eat more. I need to master reboot my whole body somehow.

As I described earlier, we (Rachael and I) are on it. If you think I might be just passively sitting back while my life hangs in the balance, then you don’t know me.

Readers might also be interested in my professional year-in-review update.

Want to discuss this topic? Absolutely no medical advice please. Your questions are welcome if they are for your benefit. 

Here is the post for discussion on the Autistic PhD FB page.