Grief and Everything, All at Once.

One of the challenges of living with complex chronic illness is that when one thing goes wrong, an avalanche of problems is soon to follow. At least that's been my experience, just about every single time I get what I call "regular people sick." This includes things like colds, the flu, sinus infections, and my recent nemesis, the stomach virus. A stomach virus that showed up just in time to help my dysautonomia make me very aware of it for Dysautonomia Awareness Month, and the two year anniversary of a medical procedure that was supposed to be simple and routine, but turned out to be anything but routine and simple.

Few things manage to take me down quite as hard as a stomach virus. It doesn't matter whether it's 2, 3, or 4, I'm gonna have a bad time. It's not that my body can't fight off the pathogen, it's that the infection sets off a chain reaction of bodily events that result in my feeling this terrible--still--three and a half weeks after the onset of acute symptoms, and with no relief in sight. It doesn't always take so long, and it isn't always this bad, sometimes it's better and shorter--this is not one of those times. What's frustrating is that I have no way of knowing what's going to happen until it's a little too late.

It starts with being almost completely unable to tell between my body's reaction to life stress and it's reaction to the stress of an infection. I start losing a lot of fluid, and efforts to rehydrate run right through me. Then, because I have stuff I need to do, I erroneously assess that I'm just being a wimp, and I need to suck it up and deal because life won't stop for me to relax. Then I get more dehydrated, and if my dysautonomia wasn't already in full swing, I hit a wall of autonomic symptoms that make it impossible to do anything. I've lost count of the number of times I've almost passed out just trying to brush my teeth in the past few weeks.

This is generally what my night table looks like during a POTS flare. One of the few treatments is increased sodium and fluids, hence all the Gatorade and potato chips.

The timing of this particular illness is important. One of the few things to take me down worse than a stomach virus happened two years ago today: I had a "low-risk" procedure that was supposed to fix a cardiac arrhythmia, called an ablation, and it didn't quite go as planned. It was my second time around having the surgery because the first attempt, five years prior, had failed to produce lasting results.

Because I had been through the process once before, when I woke up from anesthesia, I knew almost immediately that something was wrong. I just didn't feel right, but myself and all the doctors, nurses, and PA's suggested my weird feeling was from being under anesthesia for too long, or residual effects from the medication used to induce the arrhythmia while under. By the time the next morning came, I had the worst migraine I've ever had (and I've had some real doozies), and I threw up a couple times. There were explanations for these things like low blood sugar and the stress of the surgery, but looking back, I'm surprised they discharged me so soon while I was still feeling so ill. At the time I didn't care, I didn't want to stick around at the hospital, I just wanted to go home.

My heart rate data from Azumio's Heart Rate App for a few days after my discharge from the hospital.

I was supposed to be able to return to work within a few days, but all of the symptoms I had gone to the doctor for in the first place (blacking out upon standing, extreme fatigue, body pain, nausea and other GI problems, etc, all things I now know are related to dysautonomia) were worse than ever. It felt like every symptom I had ever had was back with a vengeance--everything, all at once. I wound up taking two weeks off, but despite little improvement, I felt I couldn't take any more time because I had just started a new job. I struggled greatly with my health continuously for the subsequent year and a half I remained there, but finally left this past April, because it felt like I was just torturing myself.

Over the few weeks after the ablation, I found that I had new symptoms too; my previously low resting heart rate now hovered around 115 beats per minute (bpm), i began to notice things like the fact that I was not sweating--at all--and sometimes one vertical half of my body would be flaming hot and red, while the other half would be icy cold and ghost white. I went back to my cardiologist repeatedly to find out what was happening, but a series of all the same tests I'd had to begin with that didn't show anything, still didn't show anything. The arrhythmia they had been trying to fix was an incidental finding on the tests that were originally run. It turned out to have nothing to do with the symptoms most troubling to me, even though I'd been promised repeatedly that fixing my heart rhythm would fix all of problems.

My hot and cold feet about three months after the procedure.

My hot and cold feet about three months after the procedure.

According to the American Heart Association, "Fewer than 5 percent of people who have the procedure develop any problems." Given my track record, I probably should have been prepared for it to go south; I'm usually the one who gets the rare and unexpected side effects. The first time around, the procedure that usually takes 2-4 hours took 9. They had a very difficult time getting to my heart because my physiology is "weird"--a very technical term used by the doctor who performed the ablation. But because I'd had the procedure once before, and it had gone relatively smoothly with the exception of the time thing, I was wholly unprepared for what I was experiencing after the second ablation.

Based on the new testing, I was told that there were no complications from the ablation like infection or bleeding. I was told: "Sometimes this kind of thing happens with this procedure, and we don't know why."

Though I'd had plenty of practice with doctors telling me they couldn't help me, I was used to hearing, "There's nothing wrong, we can't help you," and not, "There's something wrong, we don't know what, but we know we can't really do much to help you." I was sent away with a prescription for beta blockers, and a vague suggestion that maybe this might go away on its own (spoiler alert: it did not). I felt so lost, and so much worse than I ever had before, so I turned to researching what was going on with my body on my own.

When I recounted my experience to another one of my specialists a few weeks later, she asked me if I had ever heard of Postural Orthostatic Tachycardia Syndrome (POTS), and if I wouldn't have passed out immediately, I would have jumped out of my chair. I practically screamed, "Yes! I read about that! It matches symptoms I've had my whole life! My cardiologist told me it didn't exist!" She angry-laughed and told me how that was ridiculous, that she had several patients that had it, and she could refer me to someone who would be able to test me for it.

For humans aged 18 and over, an increase of >30 bpm, or reaching over 120 bpm, progressing from laying down to standing up (orthostatic standing test) or on a Tilt Table Test is considered indicative of POTS. Just now I had a 61 bpm increase from sitting down to standing up. Living in my body is fun!

For humans aged 18 and over, an increase of >30 bpm, or reaching over 120 bpm, progressing from laying down to standing up (orthostatic standing test) or on a Tilt Table Test is considered indicative of POTS. Just now I had a 61 bpm increase from sitting down to standing up. Living in my body is fun!

Sure enough, that was exactly what I had been experiencing all along. It turns out that POTS patients generally don't fare well with the procedure I'd had, which was really fun to learn after the fact. But for once I felt validated; I had an actual diagnosis that actually matched (most, but not all, of) my symptoms. It explained so much, and I finally knew I wasn't making it all up, as I had been accused of repeatedly along the way. The ablation, while mostly a disaster, was a catalyst for change. This was the first step to finding my primary diagnosis of Ehlers-Danlos Syndrome, which came eight months later after a lot of research, hard work, and medical and administrative hustling on my part.

Based on the new symptoms I was having since the ablation, the new doctor suggested I may have suffered some autonomic nerve damage in my heart, and that was why I was suddenly so much worse and had these new, bizzaro things to add to my laundry list of symptoms. There is unfortunately no way to verify this, but nothing can be done about it anyway. Sometimes this kind of thing happens, and my life has never been the same.

The grieving process has been long. It's something a lot of us have to go through after getting sick, but no one ever warns you about it. We are grieving our previous lives, the lives we'd had planned, the loss of loved ones who just don't get it and ghost on us. There's a lot of loss that comes with a major, long term illness, regardless of prognosis. Because my diagnostic process was so drawn out, I thought I'd already done my grieving. When I finally got my primary diagnosis last year, I thought I was ready to hit the ground running. I read every paper, watched every lecture, learned absolutely everything there is to know about these conditions, and more. Intellectualizing has always been a major coping mechanism for me, and it wasn't until a recent interview I did for the podcast that I started to realize I was still very much in denial, and no where near done grieving.

Denial is something that I ask all the people I interview about--if they themselves haven't experienced denial, they have gotten it from doctors, loved ones, and often strangers too. I was interviewing someone with Rheumatoid Arthritis who said that even though she'd become very informed about her illness, she was still totally in denial for the first two years after her diagnosis.

My own denial was incredibly complicated because it didn’t look like denial...I knew all of my facts, I knew the prognosis, y’know I knew the treatments, I understood what every code on my blood work meant, I went and joined the Arthritis Foundation’s online support group and discussed things with them. So it didn’t look like denial, it looked like I was facing it head on. It was further complicated by the fact that I was pregnant when I was diagnosed, and it meant that I could not be treated for the disease for the first year. So I didn’t have to deal with the reality of any of the drugs, with the exception of the steroids, which in the beginning were necessary to get things under control...I was one of the lucky ones, so by the second trimester, I was feeling really good. So here I am saying, ‘Yes I have RA,’ talking about it, researching it, and not believing it on this very basic level because I felt fine and wasn’t taking any medicine.
— Cathy, RA/Sjogren's/IC/POTS patient

While listening to her I thought, oh man this is really good tape, because what a story! But in the weeks since this interview, I've been thinking a lot about his concept of being in denial while also being a very informed and involved patient. I've been thinking about it a lot, because I've been slowly realizing, I'm doing the exact same thing.

I've been running around, consuming every bit of information I can get my paws on, advocating for myself and others, working on this podcast project, and also completely in denial about the reality of my illness and how little control I have over it. If you were to ask me if I felt in control of my illness, I'd say no and explain how I control for the factors I can, and let go of all the other stuff--but i now realize, I've been lying to myself about that. I've been wandering around thinking that if I can just avoid having any more surgeries, and avoid ever getting regular people sick, and avoid getting injured, and avoid eating certain things, I'll be fine and my condition won't get worse. So when this virus hit and started snowballing, I was really caught off guard. It has been very scary and very surprising to find myself sicker than I've been since the first year after my ablation.

So here I am, two years out from a surgery that changed my body forever, one year out from finally getting my primary diagnosis, and feeling like I'm back at square one. I know I'm not back at square one; I know way more about my body than I did, I have confidence and agency I'd never had before as a patient, I've put together a team of doctors that make me feel supported and have the sense to tell me when they're out of their element, I managed to keep my dysautonomia stable for almost a whole year, and for the first time in my adult life, I made it a whole year without a sinus infection.

When I write it all out like that, it seems like I'm actually still doing pretty good, and I should be proud of what I've accomplished while being very, very sick. I have to remind myself that I've actually come a really long way, even if it doesn't feel like it right now. I've come a long way, but I apparently still have a lot of grieving to do while trapped under this mountain of symptoms, pillows, pills, and empty Gatorade bottles. But I am branching out into new flavors of Gatorade, so see? I'm growing.