Category Archives: CFS/ME

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Damn Your Eyes

A note about my eye exam today:

I need to update my blog more often — for myself, more than anyone else. This morning, I had my first eye exam in 7 years and I looked back here to see if I’d said anything about the last time and saw I’d had a reaction to the yellow eye drops. I had no memory of this and it saved me from possibly having another reaction today for a not-really-needed test. So, I’m going to make a note about today’s experience to remind myself in the future not to bother going to an ophthalmologist again!

My vision was 20/15 the last time I had my eyes checked. I never needed glasses at all until July of 2020, when I realised I couldn’t see my vein very well when putting in a peripheral IV catheter to do IVIG. Since then–not even 2 years–I’ve gone up 3 magnification strengths and my right eye has significantly worse vision than the left. My distance vision is a little worse, too, which I realised when my husband (who is 12 years older than I am) could make out signs on the highway that I couldn’t.

July, 2020: The first day of the rest of my farsighted life: I had to borrow my husband’s glasses to put in my IV.

Of course, this is totally normal for people my age, but my brother started to need glasses after spending time on a submarine and had a theory that it was because he didn’t focus on anything more than about 8 feet away for so many months. I think this might hold some truth for those of us who spend so little time outside, looking at horizons and focusing on long distances.

I have a ton of eye symptoms, which bother me much more than the need for readers, but I’ve been told there is no remedy for any of it (except dry eyes). I was told in the past: “When your overall health is poor, your eye health is poor, too.” The ophthalmologist today actually said that my eye health was good, but my symptoms are probably neurological (migraines, dysautonomia etc).

Some of my eye symptoms are: floaters; blurriness; pain in orbital muscles when moving my eyes; itchy eyelashes; dry eye to the point that when I blink in the mornings, my tears feel like acid hitting my eyeballs; right eyelid spasms; light sensitivity; trouble tracking when scrolling on my phone or reading blocks of text; migraines that feel like my right eye is going to explode out of its socket (it’s silly, but I often push my eye back in with the palm of my hand because it really feels like it might pop out). I used to say that my eyes felt like I’d put grit into Vaseline and then smeared it over my eyes.

I have had radioiodine ablation on my thyroid for Graves disease (or some sort of autoimmune presentation of hyperthyroidism–endocrinologists have disagreed on whether it’s actually Graves) and was told to pay attention to eye symptoms, but the doctor today didn’t see any evidence of that being a problem. I am also positive for one of the Sjogren’s markers (carbonic anhydrase VI IgG antibodies), which ophthalmologists treat no differently than dry eye. He rattled off a bunch of things that I’ve tried in the past that have done nothing (eye drops, eye scrubs) and some I haven’t (take omega 3s, humidifier in bedroom).

He said my optic nerves, blood vessels, maculae etc were all normal. During the visual acuity test, none of the letters were sharp, but I could guess most, even though they were blurry. The doctor said my vision was considered 20/20 because I could guess 3 out of 5 of the bottom line, adding he wouldn’t be able to see any of them at all. This is the thing when you’ve had great vision your whole life–you don’t really know what is “normal” or acceptable.” I hate not being able to see the letters clearly, but being able to guess them at all, even though I was straining and it was very blurry, is still considered 20/20.

They said I am doing no damage to my eyes using the cheapo 3-pack of Costco reading glasses. It doesn’t matter what strength I use or whether I use different magnifications (I have various glasses scattered in different rooms) or whether I’m using the lenses that work for one eye, but not the other. Essentially, if you can move the phone/book closer or further away and make it work, then everything’s fine. They said I could get prescription glasses, but, if I’m getting by, there is no need. I don’t want any more energy expenditure on anything, so I’m sticking with what I’m doing. My husband was mildly alarmed by this: But if you can get prescription glasses that correct for the differences in your eyes and it makes your life better, why not? Energy is why not. It all comes down to having nothing extra to give.

For anyone with MCAS, I have had the yellow eye drops 3 times and, the last time, I had a reaction. A friend told me I could ask for a retinal scan in lieu of dilation, which I did and it was easy and only took a few minutes. Once in the past, I was told that one of my eyes had high pressure (intraocular fluid pressure) and this can be a warning for glaucoma and I should keep an eye on it (I just caught that totally unintended pun when I did a reread 🙂 ). The gold standard for checking eye pressure is the use of yellow numbing eye drops, which are used with a slit lamp and blue light. A step down from that is a handheld tonometer, which still needs numbing drops, but they don’t have the yellow dye. Lastly, there is a device called an Icare, which doesn’t need drops at all. The latter would have been my preference since I don’t know what caused the previous reaction (the dye, the numbing medication or the preservatives), but they didn’t have one at the location where I had my appointment today, so I decided to skip the pressure check, thinking/hoping I probably don’t have a problem.

Lastly, I want to note that this was BY FAR the most risky covid exposure I’ve had (or, really, just human germ exposure, in general). The rooms are tiny with no windows or ventilation and the doctor and his assistant both had to get very close to my face. Also, they cancelled my appointment last week because the ophthalmologist was out sick and I wonder — out sick with what? Even a head cold would be a deal-breaker for me. All in all, I regret the appointment because the risk of contracting a virus was very much outweighed by the chances that I have eye problems that can be remedied (I now know). But I didn’t know what was normal or should be treated and I certainly would want to know if intracranial hyper/hypotension was causing any eye damage (as seen on a CINE MRI, I have blocked cerebral spinal fluid flow in my brain because of low-lying cerebellar tonsils, which can cause intracranial pressure issues). I didn’t know if wearing shitty readers could damage my eyesight further (they can’t) and I didn’t know if having worse vision in one eye was a concern (it’s not) and I didn’t know if I could brush off all of my eye symptoms as neurological (I can). Now I know and you do, too. 🙂 Title Credit

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Many symptoms. Many tests.

I’m going to start with the last things first:

In the next month, I am having a colonoscopy under anesthesia, a fluoroscopic barium defecography, an anorectal manometry, an ACTH (Cortrosyn) stimulation test, a transvaginal ultrasound, a thoracic MRI, skin prick allergy testing, a teeth cleaning and exam, an eye exam, and two blood draws. As well as trying to do IVIG every week and regular online doctors’ appointments.

What I really want to do is cancel everything, drive to the desert and live in peace.

The one thing I know for sure is that the more I rock this body’s boat, the worse things get, so I usually freeze and do nothing. But, lately, there seems to be a new mini-crisis most days, even though I took a long break from everything during the Omicron spike. It was lovely and peaceful for a while, but my body has been scaring me this month.

One day last week, my legs started to shake and then just buckled with no warning and I couldn’t walk. I had been moving a side table, so I guess I injured something, but I didn’t feel an injury, I just suddenly couldn’t walk and it is always in the back of my mind that I have a tethered spinal cord and leg/gait issues may get worse (many symptoms — like nerve pain — that could be attributed to tethered cord have gotten better, so I’m not convinced that “detethering” surgery is the answer for me).

Over the following days, unusual deep pain traveled from my buttocks to the back of my thighs to my left calf and then disappeared. During that time, I became desperate for a house with no stairs. I bought a bedside commode. I gave up a foster dog with whom I’d already fallen in love. Losing the limited mobility I have is terrifying. My husband would have to manage so much more and my quality of life would quickly plummet considering the energy it takes to keep my intestines working and food moving through. Not to mention losing dog joy, which is almost all joy in my world.

This week has been awful whack-a-crisis every day. Over the weekend, I was hit with terrible vertigo. This is one of the most sickening feelings — like your eyes are tumbling around in their orbits and you have to keep very, very still to stop from groaning outloud. It got mostly better the next day, but I still feel like I’m walking on a ship.

Monday, I had a pelvic spasm or bowel cramp so painful, I thought it was going to trigger a vasovagal collapse because I started to tremble and got weak and breathless.

Tuesday, I spent the day on the dog bed in front of the fireplace in a 76 degree room, shaking, chilled to the bone, with blood pressure all over the place, trying not to black out. I thought I’d left these episodes behind.

Yesterday, I developed an extremely bad right-sided migraine, which woke me out of sleep, panting from the pain and dreaming of IV narcotics — which I’m allergic to, but the pain was bad enough that I thought it wouldn’t matter if I stopped breathing, I’d let them inject anything to take the pain away.

So — it’s like that. In 14 days, I’ve gone on 3 scooter walks with Penny and I’m going out of my mind, desperate to get my slow, predictable days back.

In the midst of all this, I tried to continue weekly IVIG, which is undoubtedly the cause of some of this. I don’t know why it has turned on me and I don’t have words to describe the despair if I lose the one treatment that has helped me so profoundly.

I also saw another pelvic floor surgeon who was so rough while fitting me with a pessary, that I cried out involuntarily in her office. Her exam wasn’t even that bad in the grand scheme of things, but I was mute on the drive home, feeling traumatized by the brusque anal/vaginal invasiveness of it all. I only managed to keep that torture device inside me for 3 days because it made urinating very difficult. $100 down the drain and the only reason I was able to remove it was because I joined a FB pessary support group to get tips. Thank dog for other patients!

My biggest fear at the moment is the looming colonoscopy. I’ve been rescheduling it for 7 years. Before covid, I was cancelling out of fear — feeling the information gleaned from this test was outweighed by the risks. Just in the last 2 years, I’ve cancelled 8 times. They were legitimate reasons — covid spikes and my body being too unstable — but my GI doctor is frustrated and I still don’t feel confident that this is the right decision, even though it’s now 4 days away. My blood pressure is chronically low. I can’t get it to budge above around 85/55 — often lower. I wanted to try Fludrocortisone (a corticosteroid that can boost blood volume by increasing sodium in the body) before doing this procedure, but it takes me an excruciatingly long time to first get the nerve to try new medications, then to find a good day when I feel stable enough and then it takes weeks of eating little slivers to work up to a meaningful dose. It didn’t happen, along with dozens of other meds in my cupboard, waiting to be opened.

I was going to give myself IV fluids at home during the colonoscopy clean-out (I do my own peripheral IVs), but, in the last year, I’ve been having scary episodes and just this week realised they might be from IV saline. My vision starts to darken, like I’m going to black out, I get very cold and shake badly, my blood pressure spikes — this can go on for hours. It’s always the day after IVIG, so I stopped my infusions for 3 months, but then it happened when I did IV fluids without IVIG. I thought it must be the saline coupled with Midodrine, the low blood pressure medication I was on, so I stopped taking Midodrine and for 6 weeks, I was sure that was the answer. Until this week when it happened again.

My blood pressure has been dropping very low during IVIG, so, on top of the liter of IV saline, I’ve been drinking around 3 liters of salt/electrolyte water on infusion days (and eating a ton of salty snacks). It didn’t help boost my BP during the infusion, but I had another one of those episodes the day after. It almost feels like volume overload because my eyes get swollen, my BP spikes and I feel breathless, but my “high” blood pressure is still low by other people’s standards. During this episode the other day it was spiking to 107/74. How do you explain to a doctor that you’re in a “hypertensive” crisis when your BP is still lower than normal?

So, I’m about to start a dehydrating colon cleanout when I’m already weak from chronic hypotension, hemodynamically unstable, battling presyncope, having pelvic floor spasms and bowel pain, prone to hypoglycemia, my heart is tripping all over the place, and my brain feels like it’s going to explode out of my right eye. If I get through the prep without having to call the paramedics, I’m then meant to volunteer to let a stranger inject powerful sedatives and painkillers into my vein and hope that I don’t go into anaphylaxis or have my vitals bottom out. Or catch covid, for that matter, since vaccination is too risky, yet I have a primary immune deficiency, which feels like the worst combination during a pandemic.

Being released from the hospital and coming home almost feels the most reckless because all hell breaks loose in my body AFTER the fact. It’s in the middle of the night or the day after that the adrenaline wears off and the real problems start. I wish they’d admit me afterwards for observation, honestly, but it would be ludicrous to even ask. These are routine procedures that everyone gets done, after all.

But it doesn’t feel worth it. It feels dangerous. Which is part of why I’m writing this, I guess. I got out my advanced directive and durable POA. FFS.

We also found out this week that my healthy rock of a husband has a brain aneurysm and will need surgery. Surprise! That’s a story for a different time. But, really, forget all of my stuff. If anyone out there is going to send good thoughts/juju/prayers this way, please send them directly at my husband’s brain.

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In Amber

A DECADE

A decade since I felt well.

A decade since my body and health were not on my mind. 

A decade since my last cold, flu or bronchitis.

A decade since my last vaccination.

A decade since I enjoyed Halloween, my favourite holiday.

A decade since I was in a lake or ocean.

A decade since I was on a train.

A decade since I stood up at a concert.

A decade since I didn’t wear a mask on a plane.

A decade since I went to a wedding.

A decade since I went to a barbecue.

A decade since seeing so many friends.

A decade since I married my longtime boyfriend because “I feel like something is going to happen to me and I want you to be able to legally speak for me, if I can’t speak for myself.”

A decade since I was in Ireland, in my childhood home, walking the streets of my heart.

I thought about this anniversary so many times in the past. For a long time, I thought there was no way it would come–I couldn’t possibly stay sick this long. Every other illness had a beginning and an end, so, surely, one day my body would recover and this spectre would leave, it was just taking a little longer than the usual virus.

Once I realised it was lifelong, I thought the 10-year mark would be a momentous and heavy occasion. It turns out, it’s not. 2 years seemed much harder to accept. Back when isolation was still harrowing and loneliness still suffocated. You get used to both. It helps if you can develop a deep disdain for humans, so you can trick yourself into believing you’re not missing out on anything. And the 5-year mark was hard. I’d felt small, but miraculous changes from IVIG and then had an epic autumn backslide that year. The dowsing of that little flame of hope was devastating and it was inconceivable that I would be physically or mentally resilient enough to continue the maybe-I’m-getting-better!-Oh-no-what-fresh-hell-is-this? cycle for years to come.

But, then, suddenly, 10 years have passed. I could almost believe the rest of the world is trapped in amber, frozen in time, awaiting my return. As soon as I kick this thing, I’ll drive back down to the office–each street scene melting and returning into motion as my car passes by–and get back to work. Thanks for waiting, guys.

INFECTIONS

What’s far more unbelievable to me is that I haven’t had a muggle illness in a decade. [Please don’t let this jinx me.] No head cold, no flu, no stomach bug, no chest/ear/sinus/bladder/any-other-part-of-the-body infection. The more time that went by, the more ominous was the thought of contracting an acute virus. For years, I had relentless flu-y symptoms–headaches, sore throats, muscle pain, weakness, chills (and still do, sporadically)–and I have many high out-of-range infection titers*, so the thought of another malady compounding the daily slog was harrowing.

*HHV6 IgG; HSV IgM; EBV IgG; M Pneumoniae IgG; S. Cerevisiae IgG; Varicella IgG and IgM; Coxsackie A7, A9, A16, A24, B1, B2, B5 and B6; Anti Streptolysin O Titer, and Candida IgM and IgA. Yes, really.

Three years into my illness, Dr. Chia told us unequivocally that a run-of-the-mill cold could make me permanently worse, so we have always taken great precautions to avoid exposure, which have only intensified during this pandemic. I honestly wonder if I’ll ever be indoors and maskless with anyone besides my husband again. Even worse, will my husband ever be indoors and maskless with anyone besides me? It’s one thing to choose this life for myself–I’ve made peace with only having remote communication with friends and family; I have a partner and a dog to keep me sane–but my healthy husband’s life has shriveled to keep me safe and the guilt from that is indescribable. I imagine if he weren’t yoked to someone at such risk for serious complications from viruses, he might be out gallivanting and socialising, as well he should be.

VACCINES

One of the first doctors I saw after falling ill said, “You are very sick. We don’t know what’s wrong with you, but you should never get another vaccination as long as you live.” I was confused because, until that moment, I hadn’t linked whatever this sickness was to the flu shot I’d gotten a week before Halloween. I was also confused because, in my healthy ignorance, I thought vaccines only bolstered your immune system. I really didn’t understand, in certain unique circumstances, that they could break it. I used to get every immunization available in an effort to protect myself.

Before I traveled to Central America, I was vaccinated for polio, live typhoid, hepatitis A and B, tetanus, diphtheria and gammastan–all on the same day. In the years after, I got the live varicella vaccine, the 3-shot hepatitis B series, measles, mumps, and rubella and, of course, the flu shot every year, along with a pandemic flu vaccine (H1N1) when they were offered. I didn’t get majorly sick while traveling, I didn’t get chicken pox when I tended to my horrifically poxy husband and I never got the flu despite working very long hours in restaurants, among infectious people (note to the public: restaurant staff work when they’re sick; you have to be on death’s door to ask someone to cover a shift), so I guess the vaccines helped… until they harmed.

COVID

There’s such polarization these days when it comes to covid vaccines. There’s a lot of hatred directed at those who are trying to protect themselves and others by getting vaccinated and wearing masks and there is an equal amount of contempt directed at anti-vaxers. I have yet to see a single news story talk about those of us who want to get vaccinated, but cannot. Or those of us who have to make the agonizing decision to live a life of extreme isolation or risk very serious repercussions from a vaccine–any vaccine. I wish individuals would always take the collective into consideration and try to protect those that are vulnerable, but that’s not human nature, unfortunately. People will refuse vaccinations or not wear masks or not get tested because they don’t want to quarantine. And, all the while, those of us with weakened, damaged or overactive immune systems–be it from chemo or old age or autoimmunity or ME/cfs or steroids or stress or another condition–will have to choose seclusion over risk.

Against one of my doctor’s advice, I will be getting the first covid vaccine next month–but I’m getting a pediatric dose. We will see how I do and then I’ll get a second dose and test antibodies. They will be keeping me for observation in the clinic for an hour because of my history of anaphylaxis, but that’s not what I’m worried about.

I’m worried about being bedbound again. I’m worried about volunteering for an injection that could further damage my autonomic nervous system and intensify dysautonomia and hyperadrenergic symptoms. I’m worried about triggering more vasovagal collapses or making myself more hemodynamically unstable. I’m worried about a cytokine storm and/or a mast cell meltdown that creates a permanent worsening of reactivity when I’m already so limited in medication options and trying so hard to keep on weight. I’m worried about a blood clot causing sudden death because IVIG, oral hormones and inactivity already put me in a high-risk category. I’m worried about losing the limited amount of independence and mobility I have now (but it’s enough for a happy life) and becoming too weak to even wash my hair again. I’m worried about being that burden to my husband again, especially now that it takes so much work to make my GI tract function–it would be a monstrous task for him to take on. Mostly, I’m worried about once again losing the small joys, like taking Penny on our scooter walks, being able to talk on the phone for hours and laughing. I spent years without those gifts and I’m not sure I can claw my way back over another decade. 

It feels good to write out those fears. There are very few people with whom I can have these discussions because not many healthy friends understand the risks involved when dealing with such complex conditions. Everyone in my family has had at least 2 covid vaccinations with no side effects, but, in my support groups, it’s a different story. Even there, though, I am careful–I want everyone to get vaccinated, if they can safely, and I never want to dissuade others by voicing my concerns. And doctors aren’t much help because the vast majority take the practical stance that, statistically, the chances of negative repercussions are low and that the risks outweigh the benefits. That’s absolutely true for the typical bell curve of the typical population. Not true for me.

Let’s just hope it’s all smooth sailing. I’d like the next decade to be different.

Update: My doctor pretty much talked me out of getting the C vaccine. I’m too high-risk for long-term reactions. I’m going to have to get surgery next year, so not being vaccinated in a hospital setting adds another layer of fear, but I won’t be stable enough for surgery if the vaccine caused damage. So I will be remaining in strict isolation and putting my life in other people’s hands.

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what is and what should never be

Yesterday, I was in a very dark place. I was (and am) beaten down by relentless bowel symptoms that eclipse all others and continue to monopolize every day.

What food to buy, how to prepare it, when to eat and * whether to eat it, how much to eat and how much to blend it, what digestive aids to use — bitters, ginger, HCl, enzymes, castor oil, Digest Zen, massage — how to move it through, what medications to take and in what combinations, at what times, how to ameliorate the side effects, how to improve my bathroom situation — padded toilet seat, squatty potty, head rest, neck brace, lubricant, pillow — worried that I’ll be an 80-year old trying to get up and down off the floor to give myself enemas, worried that my husband will be giving me enemas, scouring support groups, researching surgeries, praying for someone to cut out my colon and replace it with a bag… Fearing that this will kill me. Or that it won’t and I’m trapped in this body with no easy exit.

Today, I saw this memory and it immediately brought tears to my eyes. At this point, I’d been sick for almost 3 years and mostly bedbound for almost 2. I was so, so sick. I shudder to think of it. Sure, I could still eat solid food and poop, but only if I managed to get up and leave my room. They were the most terrifying years of my life. A privileged “terrifying,” I realised even then — I had family, a home, resources — but gratitude didn’t quash the symptoms, fear and confusion about what was happening to me.

It took Herculean efforts on the part of my mother, husband and friends to get me to California to see Dr. Chia (where I took this photo) and it felt like the effort might kill me. But the emotion from seeing the ocean when I truly thought I never would again (shit, even the feeling of seeing Seattle as we drove to the airport) was completely overwhelming and magical. And, also, very sad because I didn’t know how or if it could happen again.

Anyway, I needed this slap in the face today to remind me of what was and what is no longer my situation. My illness now is structural and neurological. It’s just as scary and uncertain, but I can take my dog for a walk with my mobility scooter and cook some soup and talk on the phone and watch a movie. Without a pandemic and if my gut behaved, I could even have a social outing.

From 2012 through 2015, I white-knuckled-it through every single minute of every single day, concentrating on taking the next breath and making it to the next hour. I still find it exhausting trying to keep my body functioning, but it did get better, just like my Mom told me it could. I’d once had a rare better day with less poisoned pain, fewer flu symptoms, an uptick in energy and she said, “If it happened once, it can happen again. And for longer.” I clung to those words like a drowning person, trying to swim up towards the light.

For everyone in this situation, for people with severe ME, for all the long covid patients, it does get better. Or, at least, things will shift and change. Grab hold. Hang on.

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20-year An(aphylaxis)iversary

20 years ago today (I started writing this on May 27th), I stopped taking health for granted. It would be another decade before life as I knew it abruptly disappeared with the collapse of my immune system and the descent into severe ME/CFS, but this day in 2001 was the beginning of the end of health ignorance and body confidence.

My husband and I were at my friend’s birthday party, sitting at an outdoor table in the dark, chatting, drinking beers, smoking cigarettes. My breathing started bothering me to the point that I mentioned it to my boyfriend (at the time). He put his ear on my chest and said he didn’t hear anything abnormal. But that’s why it got my attention — I’d had many, many chest infections and asthma issues in my life, but this was different, this was like a vice around my lungs. I was smoking, though, so it was easy to explain away. And I was drinking, so I didn’t want the party to stop.

A while later, I went to the bathroom and, when I looked in the mirror, I saw a huge defined rash on the bottom of my face, down my neck and onto my chest. It looked like I’d drawn a distinct outline and colored it in with a bright red marker. I’d never, ever dealt with hives or rashes and I always thought they were blotchy and maybe raised, maybe itchy. This was nothing like that; this looked like a slab of raw steak. 

We decided to go home and, on the way, I called the consulting nurse service at my doctor’s clinic. The nurse asked me if my tongue was swollen and I replied: “Yeah, actually, it’s so big, I’m chewing on it. “ She very calmly said: “Hang up the phone and call an ambulance.” When my boyfriend heard this, he turned around and drove through every red light to get to the emergency room. It was such a weird experience — the triage nurse took one look at me and brought me straight back to get hooked up to an IV. I was drunk, totally oblivious to the seriousness of the situation and then quickly doped up on diphenhydramine and mellow. Before we went home, the nurse said it was the worst case of anaphylaxis she’d ever seen. 

But when you’re young and healthy, it’s easy to ignore these things. It happened twice more before I went to see a specialist and all the RAST and typical allergy blood tests came back negative. I told the doctor that every time it happened, I was at an event or party (after the first birthday party, it happened at another birthday party, an Oktoberfest gathering and an Easter celebration), I had been drinking alcohol and it was the start of my period. Those were the common denominators. I was dismissed by the allergist at the University of Washington Medical Center — he actually threw the Pub Med articles that I had printed out at the library into the trash can in front of me with a flourish — and so I dismissed it, too. They know best, right?

The last time I went into full-blown, classic-presenting anaphylaxis, I almost died. I was a rag doll, carried down the stairs on a stretcher by the paramedics. They kept asking what drugs I had taken, not believing that this was an “anaphylactic reaction to alcohol.” It traumatised my boyfriend and mother. It was the last time I had a drop of booze.

My body, my health, and our lives have never been the same. 20 years of collapses and tests, specialists, diagnoses, treatments and medications, pain, reactions, research, fear, loss of career, social life and hopes for the future. 

I haven’t gone into grade III anaphylaxis (bordering on grade IV that last time) since 2002, but the spectre is always there. Hypotension, heart arrhythmias, angioedema — they’re barely managed and always providing a low-level thrum of unease in my days. I could escalate at any time if you’re not hypervigilant, they say. But I’m not very careful and I like to test the boundaries. I found over the years that the negative effects from hypervigilance just slightly outweigh the fear that is borne of risk-taking, especially when each time I throw caution to the wind and come out unscathed, I gain a little bit of confidence and hope that I’m safe now and it won’t happen again. 

I don’t do parties, though, and I try to keep menstruation at bay with prescription hormones. And I’ll never have another drink as long as I live, even if I woke up healthy tomorrow. My mast cells will continue to find new and creative ways to wreak havoc on my body without my help.