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.

Title Credit

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.

Reblog: The reluctant patient

I started writing a blog post months ago about my current decline, new symptoms, new diagnoses, horrible and risky testing that I’m trying hard to avoid, and even more horrible and risky procedures and treatments. I never seem to be able to conclude an entire post, but, luckily, my friend Caroline is in exactly the same position. It’s almost unbelievable how closely aligned our current situations are, including the same doctors (we first met for a quick coffee while we were both in California from out of state to go to the same clinic), the same offers for testing and surgery and the same reluctant mind sets (the latter feels most important because I have one person who gets me).

Caroline has written such a clear and astute account of the mental gymnastics we go through when coming to terms with structural diagnoses and the agonizing decisions that need to be made when weighing the devil you know against the one you don’t.

So, thank you Caroline for writing this update for both of us! And for my friends and family: If you’d like to know what’s happening with me, just read this and everywhere she has written “urinate,” replace it with “poop” and you’ll get the gist of my life.

The reluctant patient

I am exhausted from being a patient. In the early days of my illness, I kept a journal, tracked symptoms, and made schedules. Now, I cannot be bothered on most days, but recently I have had to re-engage with my medical care due to declining health.

For years, I actively pursued tests that might shed light on why I feel so poorly. One of the most annoying aspects of having ME/CFS is that we look so normal on paper until you start digging into advanced testing. It is a strange place to be, to want positive test results that point to new treatment directions while at the same time hoping that nothing is seriously wrong. If a test comes back positive, I remind myself that knowledge is power. If it comes back negative, I can rule out a condition. Each investigation brings me closer to the truth behind my illness, regardless if it is negative or positive.

Over the years, my strategy has changed. Rather than pursuing medical explanations for each new symptom, I put my head in the sand, hoping it will all go away. Yet new symptoms are usually a harbinger of decline, especially when they settle in permanently. Ignoring symptoms when it gets to this point is rarely a winning prospect.

Continue reading here….

Autonomic Testing Payback

I didn’t get away with it and what’s happening is scaring me. I have been incredibly sick for the past 8 hours. I got home from the autonomic testing yesterday afternoon and I felt at my normal baseline all night. Went to sleep at my normal time and, two hours later, I woke up with violent chills. I couldn’t adjust my position without shaking all over. This is a reaction I have that I’ve never been able to work out — mast cell? autonomic? It feels very viral. It’s so systemic, I can’t sleep. For 4 hours, I was clothed, with my electric blanket on high, unable to stick my head or even a finger outside of the duvet, holding as still as possible to not cause the shakes. Then I started to burn up, my body like a furnace, had to lie naked outside of the covers, waiting for the bed to burst into flames. My temperature through the whole night stayed at 97.5. It seems inconceivable given what I was feeling internally.

But here’s what’s scaring me: My heart rate lying completely flat, before I even got out of bed, was in the high 80s. I am typically in the high 50s to mid-60s while at rest. I don’t think my supine heart rate has ever been that high, even at my sickest. I looked at the graph from my smart watch and — well, here: 

I KNOW many of my friends have heart rates much higher than this (and I can only imagine how awful it is), it’s just scary when it was totally normal until I’d been asleep for a few hours and then — bam. Skyrockets. Also, that it’s staying there today when I’m lying here, holding still.

What happened during the testing yesterday? Is this just payback? How can I feel so okay during the appointment and afterwards and then have all hell break loose in the middle of the night? I know this is what has always happened with me — the nighttime reactions — but it would be from Christmas excitement or socialising and I’d be feeling the toll throughout the day. I just wonder — what happened to my heart in the aftermath of the tests yesterday?

Mostly, I’ve just had the wind knocked out of my sails. I was on such a high, feeling like I was strong enough to come through the testing, off my meds, with no issues. Loving my body’s resiliency…

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Serendipitously, I had an appointment this morning with a cardiac electrophysiologist to ask his opinion about my vasovagal collapses. I had another one a few weeks ago and it was one of the worst yet (these are different from the nighttime chills/shakes — much more serious and have been happening since 2005, long before I was sick). This last episode was from a pelvic floor spasm and happened very quickly. My husband called the paramedics because I looked like I was dying and couldn’t talk, bradycardia making it hard to breath, hypotension. I was shaking all over, drenched in cold sweat, pooped the bed. It scared both of us.

I was able to chat with the EP this morning over video from my bed, thank you, covid. The bad news is, though, that he can’t help me. He said there’s no point in doing a heart monitor because my episodes are so sporadic and there’s no point in implanting a loop recorded (as a consideration for a pacemaker) if my heart rate isn’t going into the 30s or 20s. I can’t even imagine that. The dragging feeling of my heart in the 40s during one of these collapses is utterly horrific. He suggested a tilt table test and I said, “why, I just happened to have one yesterday.” He wasn’t really convinced that I have hyperadrenergic POTS. He wasn’t really interested in what happened to me in the night. Ultimately, he said I have no good choices — to avoid the collapses, I would have to avoid triggers, which means not having periods, not having bowel movements and not having sex. I’m wondering how to be okay with the stripping down of layers of life. The mourning of each loss is so immense. For all of us.

Autonomic Testing Revelation

Today I spent 3 hours getting autonomic testing at my new neurologist’s clinic and my mind is spinning from the info that came out of it.

I had this testing done at a hospital in 2013 when I was much, much sicker. The results were “inconclusive.” I wasn’t diagnosed with POTS because my heart rate didn’t go high enough and I was unable to complete the valsalva maneuver because I was simply too weak. I could barely make it through a conversation back then, so exhaling forcefully for that long wasn’t in the realm of possibility. I was subsequently diagnosed with orthostatic intolerance, a different form of dysautonomia, and I’ve been trying to manage it ever since with blood pressure medications, salt loading, compression stockings, IV fluids and all the little lifestyle changes I was advised to make (leg muscle tensing, elevated head of the bed, drink 16oz of plain water upon waking, electrolytes, not standing up too quickly etc.).

For the testing today, I hadn’t taken my BP meds, hydrocortisone, H1 and H2 blockers or any other medications or supplements in 60 hours (except my hormones because, damn you, period, don’t you dare think about peaking your ugly, angry red head in the door). I haven’t done  IVIG or IV fluids for 3 weeks. I felt like crap this morning, I was fasting, I couldn’t have my pint and a half of strong, black tea to kick my life-force into gear and I only slept 4 hours. I was a bit nervous of the testing, but… I felt better leaving the clinic than I did arriving! Even after a blood draw.

The good news is, I could do the valsalva test  — it’s really hard, but I had the muscle strength to do it — and I was fine during the tilt table test. My feet still felt like they were going to explode from the blood pooling and my neck got stiff and sore, but otherwise there were no issues. I remember how weak I was during this test in 2013, how I had to have them put the table down because I felt my vision blacking out and I had crippling vertigo for a full two weeks afterwards. I even wound up seeing a neurologist about it because I didn’t want to walk into walls for the rest of my life. Back at home today, I have a pretty bad headache and my neck feels stiff, but otherwise, I’m okay. It just feels so good to have some comparative evidence of my progression and resiliency. 

The results from today’s tests were 1) normal respiratory sinus arrhythmia, 2) normal QSART (quantitative sudomotor axon reflex test) result, 3) blunted valsalva ratio on 2 out of 5 tests (I’m not really sure what that means) and 4) the kicker: I have a new diagnosis: Hyperadrenergic POTS. I can’t believe it.

My BP is never, ever, ever in triple digits. I’m on Midodrine three times a day and about to start Fludrocortisone. Hypotension has been the running theme throughout my entire life, even before I was sick. Gotta get my blood pressure up, gotta drink water, gotta eat salt. My at-home lean tests (“poor man’s tilt table test”) have never shown a systolic BP higher than mid-90s, but, today, my resting supine BP was approximately 105/70 (what??) and, while upright, it got as high as 139/something (say WHAT?!).

A few years ago

I don’t know what to think. Suddenly I’m being told not to start the Fludrocortisone prescription I just filled and to reduce my Midodrine.

I have to research hyperadrenergic POTS, I only know a bit about it and I have no idea if it will change the direction of my care besides tweaking meds, but I’m THRILLED to show a higher BP, even if hyperadrenergic POTS is bad news. It makes me wonder if I should come off all of my medications and supplements!