What Happened in 2022

The year 2022 has been a pretty hard year for me medically. I wanted to write an update on what has happened for those I don’t see as often, or anyone else who’s curious.

I started the year a month into a moderate POTS flare. I was struggling, but in ways I had struggled before. I was managing well enough. At that point I could only be upright for about 20 minutes at a time but I was making it work and making the adjustments I needed to. I was also having a weird new symptom that caused me to cough and clear my throat anytime I ate anything. I didn’t know what it was for several months, but my doctors were guessing some sort of environmental allergen so I bought an air filter. It turned out not to be allergies but I’ve got to say, I do love my air filter. It works great, gets rid of odors, and can even filter out bacteria and viruses from the air. 5 out of 5, would recommend.

In February things got much much worse. Looking back now my doctors suspect I got Mono from the Epstein Barr Virus. This could have been a new infection or it could have been a reactivation from a previous infection. The presumed Mono set off the most severe POTS flare I’ve ever experienced. It hit me in the middle of the day on Tuesday February 22nd. The day before I had experienced some heightened anxiety but that shouldn’t have been enough to make all that happened happen. I was essentially bed bound.

At that point I could take myself to the bathroom but that was pretty much it, and even that I suffered for. Standing up at all caused a nearly immediate fight or flight response due to my POTS symptoms. I could stand up for about 5 minutes max but that would result in the same symptoms as a panic attack, which I then had to deal with over the course of the next hour or so once I layed back down. I remember standing up to brush my teeth at night and then having to do a meditation exercise in order to calm my body down enough to sleep. Even that took at least a good 20 minutes.

During this time the thing with the coughing after eating was also getting much worse. Within a few days it got to the point where eating anything made me feel like I was having an asthma attack. Breathing felt harder than it should and my throat was full of excess mucus. When you have a choice between eating and breathing you choose breathing every time. As a result I began to lose weight. Over the next 6 weeks I would lose about 20 lbs, none of it on purpose. After talking with my primary care doctor I made an appointment with my allergist. He suspected what I had was not an allergic reaction but a weird type of GERD (acid reflux) called LPR. He started me on some medications for that and they helped a little bit so he sent me to my gastroenterologist.

My GI doctor explained that LPR, which stands for Laryngopharyngeal Reflux, is a less common form of GERD that only affects the throat, without affecting the esophagus. He also explained that it tends to be more stubborn than traditional GERD and it takes more time and higher doses of medications to get under control.

One of the problems I was facing at this point (late February and March) was that my POTS needed me to lay down the vast majority of the day, but my LPR needed me to be upright for several hours after eating. I was also having to adjust what kinds of foods I was eating to reduce any reflux triggers, but I wasn’t able to prepare my own food for months due to the POTS not letting me stand up for any length of time. There’s only so much you can cook in a 5 minute chunk of time. It was hard enough for me to just warm up food that was already made, let alone cooking nutritious whole foods from scratch while following a brand new set of diet restrictions (in addition to all the old diet restrictions I already had).

All of that meant I had to ask for and accept help. I was incredibly lucky to have lots of friends who were able and willing to make food for us or help out in other ways during this time. Eric and I felt very well supported by our community. The only problem was that I have some serious neuroses around food safety. Later in the year I would be officially diagnosed with OCD, mostly concerning my fears around germs and food borne illnesses. But at the time, all I knew was that it made me very anxious to eat food I hadn’t prepared myself. And since I couldn’t prepare my food myself, that meant living with a lot of anxiety for months.

I did what I could to mitigate this, and my friends were wonderful about verbalizing things for me when I asked for help. For instance I had friends who would tell me they temp-ed the meat before they took it out of the oven so it’s definitely done all the way. If I was having a bad anxiety day I would often temp the leftovers after I’d warmed them up so I could see it myself. My husband was on top of food safety concerns too and would often verbalize for me what he was doing while I was sitting in the other room. For instance he would tell me clearly and verbally that he had washed his hands after handling eggs.

All that time, while I was learning a totally new diet, struggling to eat, and dealing with some extreme anxiety triggers, I was also in that terrible POTS flare. I started aqua therapy (pool physical therapy) about a week after the flare started and I was going 3 times a week. The pool was the only place where I was able to move my body around without having serious negative consequences. Being in bed or on the couch as much as I was resulted in a lot of muscle and joint pain. The human body isn’t made to be stationary. It was a tough time with lots of new problems and without many answers.

Towards the end of March I went to Toledo, Ohio to see a POTS specialist. It’s always refreshing to see a doctor who doesn’t think you’re the weirdest patient they’ve ever seen. The POTS specialist was able to identify with me a couple of potential triggers that may have set off this whole episode. She confirmed for me that I was doing the right things with my lifestyle adjustments and my aqua therapy, and she offered me concrete help in the form of a medication change and a more specific exercise plan. It was basically the Holy Grail of specialist appointments. She helped me figure out what had gone wrong, validated my efforts so far, and offered me real help.

The fall before all this started I had undergone a new medical treatment for my depression using TMS or Transcranial Magnetic Stimulation. It was so successful that I went off my antidepressants. It turns out that those very antidepressants were also treating some of my POTS symptoms. Around that same time I also had several infections over the course of a month or two. The combination of the infections and going off the antidepressants is what started my moderate POTS flare in December of 2021. Then when I presumably got Mono in February of 2022 my body was already struggling a lot so it hit me like a ton of bricks.

I spent April and May getting back onto my antidepressants, continuing aqua therapy, and slowly building up my stamina on land. By the time summer came I was able to stand up for 5-10 minutes without experiencing an immediate fight or flight response. That meant that I didn’t have to rest for as long in between bouts of uprightness. That allowed me to do some longer tasks by spacing them out throughout the day. I still couldn’t cook a whole meal but I could slowly prep a meal over the course of the day and then my husband could do the cooking in the evening. Around this time I also bought myself a lawn chair with a footrest and a reclining back which made it possible for me to attend events with our friends. I could park it in my chair and last an hour or two on a good day. It doesn’t sound like much but at that point those things were huge improvements.

The POTS team in Toledo have done some research on why so many POTS patients tend to be easy bleeders and found that a lot of them have a platelet dysfunction called Delta Granule Storage Pool Deficiency Disorder. While I was there they decided to test me for it. It’s helpful to know about if I ever need a major surgery, get into a bad car accident, or have a baby. It took several weeks to get the results back but I tested positive for it. At that point they recommended that I follow up with a local hematologist. I got a recommendation from one of my favorite doctors for a hematologist he liked and made an appointment for May.

I thought I would be going in to get established with someone and maybe to get a medical alert bracelet, but this guy was thorough. I’m glad he was so thorough because he has found some things. He took 15 vials of blood after my first visit. He found that I was low on folic acid and a little on the low side for iron. He put me on a folic acid supplement in May and I followed up again with him in July.

In July I found out that some of my bleeding tests had come back abnormal in a way that didn’t relate to the platelet dysfunction we already knew about. He needed to do more tests to figure out why those results were coming back the way they were. We did another round of tests and I tested a little low for Factor VII. Being Factor VII deficient is fairly rare and I’m only a little bit deficient. When I saw him again in August for my next follow up he decided to retest the Factor VII and I came back with exactly the same results. A tad low but not too significant. The problem with Factor VII deficiency is that the treatment, if given when it’s not needed, would cause potentially deadly blood clots. So I guess I kind of have one and a half bleeding disorders. He doesn’t want to put the Factor VII on my chart and have someone treat me for it when I don’t absolutely need it.

In August we also found out that I was lower in iron than I had been in May. I was low enough at that point that he recommended I do two iron infusions. I had been having symptoms of iron deficiency for months but I couldn’t differentiate them from my POTS flare. How was I to know I wasn’t getting better as quickly as I should have been? So those symptoms kind of flew under the radar for a while. I had the first iron transfusion on Eric and my 9th anniversary. How romantic!

Luckily I didn’t have any allergic reactions to the iron infusions and had only mild side effects. In the weeks following my iron infusions I noticed a bit of increased energy and I was also cold less often than I would normally expect. It’s hard to pin down exactly what causes any given change but it does seem like the increase in iron has helped some.

Meanwhile, towards the end of summer I decided to start seeing a dietician. I had been able to maintain my weight but I was struggling to gain more and as we found out, I wasn’t getting nearly enough iron in my diet. I was worn out and a bit overwhelmed and the food side of all this just felt so complicated to me, so even though I may have been okay to figure things out on my own, I wanted the help.

Working with the dietician was great. She helped me to liberalize my diet now that the LPR was more under control. I still can’t eat everything I used to but now I feel like I can eat maybe 75% of what I used to be able to. Her guidance helped me to prioritize reintroducing foods and learn ways to soften the blow of eating foods that may upset my LPR. We also set a goal of gaining about 10 lbs. Since I started working with her in August I have gained about 4-5 lbs so I’m halfway there. My dietary challenges feel like an area where I’ve been able to make slow and steady progress in the second half of this year. The next steps are continuing to gain some weight and trialing reducing my LPR medication.

The psychiatric side of things was also a little more interesting than I’d like. I was still doing well after the magnets in terms of depression. But my anxiety symptoms were now at the forefront. In some ways being depressed helped with my anxiety because there was a certain amount of nihilism to fall back on. I could be scared of dying of COVID say but also think “whatever, we’re all going to die sooner or later anyway, what do I care?” So while it has been magical to not be depressed for the first time in my memory, it also put my anxiety into harsher contrast. It turns out anxiety is worse when you actually want to keep living.

Over the summer my psychiatrist diagnosed me with OCD and medical PTSD. I had expected that there was more going on than just your run of the mill generalized anxiety, but honestly I thought it would be one or the other of those things rather than both. Being diagnosed with both felt pretty overwhelming. I had resisted the urge to start learning about them until I got the actual diagnosis because I didn’t want to invest a bunch of time only to find out I was learning about the wrong thing. Once I was diagnosed however I dove into learning about OCD and PTSD in the form of books, articles, and online support groups.

Eventually I started to realize that I was spending so much time and energy thinking about PTSD that I was starting to have more and more PTSD symptoms. One day I realized that I’d had 3 different nightmares in a week and I hadn’t had a good night sleep in that time either. I don’t usually have insomnia or nightmares but they are some of the most common PTSD symptoms. At that point I decided to take a step back from learning about trauma. I also took a half step back from learning about OCD just because it all felt linked and overwhelming. In the following month and a half I read 14 books, mostly fiction, as a form of escapism and rest.

One barrier we had run into was that the most common first line of treatment for OCD would be to increase my antidepressant dose significantly. The issue is that high doses of antidepressants are platelet inhibitors and we had recently learned I have one and a half bleeding disorders. The hematologist says we can try it and just stop if I start bleeding a lot. My psychiatrist doesn’t seem totally comfortable with that plan and would like to wait and see what happens when we fix my folate and iron levels before trying anything risky.

In the fall I found out that I also have a genetic mutation of the MTHFR gene, which has to do with absorption of folic acid and other B vitamins. I have two copies of the mutation C677T which means that my body can only absorb about 30% of the folate I ingest compared with healthy controls. It also means that my parents each have at least one copy of the gene. The good news is that through supplementing folic acid and other B vitamins I should be able to minimize the impact of this. The bad news is that this will be a lifelong thing I have to manage and keep an eye on.

It’s been an incredibly busy year medically for me. I was diagnosed with probable Mono (maybe as a result of another infection), LPR, a platelet defect, a little bit of Factor VII deficiency, low folic acid and iron levels, OCD, PTSD, and the MTHFR genetic polymorphism. And all of those things were on top of the conditions I already knew about and had been managing as well as I could. I’ll probably never understand exactly what caused all of this to happen but I’ve learned a lot and hopefully that knowledge will lead to better management and treatments for my various conditions.

May 2023 be gentler.