The future might be the past…

I’m going through a rough(er) patch. My body is scaring me because I can’t find any cause for recent episodes. One of the good things these past few years, is that I can usually pinpoint a reason for reactions and downturns. Even after the last horrific night I suffered with apparently no reason (it was last November, during my Dad’s very short visit and I couldn’t blame it on overdoing it because I didn’t), I started spotting late the next day and–light bulb!–it was my period coming a week early (I can have terrible reactions on the day before or the first day of menstruation).

When my husband called 911 on the first day of my last period (both my MD and ND said that my body had gone into shock), it was the first time I’d had such a bad collapse with vitals bottoming out since 2010 — since before I was sick! Then, 5 days later, I got a tingly tongue and lip during IVIG and then a hive on the base of my throat. I realise it was a tiny reaction compared to what so many mast cell patients go through (a week later, a friend of mine went into full-blown anaphylaxis during her IVIG infusion and then somehow got the guts to try again the next day with the same batch –that put my experience into perspective), but the thing is, except for one small hive when I tried Xanax in 2013, I hadn’t had any hives since being in full-blown anaphylaxis 17 years ago! And that place–a hive in the suprasternal notch– was always the position for a systemic red alert, for something I ingested, as opposed to benign contact dermatitis.

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Then Saturday evening, my tongue swelled up for the first time in 7 months for no reason that I can figure out. I had tongue swelling a few times last year, but I could always explain it (dental work, sauna, vancomycin). Even more concerning, it’s still swollen now, 45 hours later and that’s very unusual. I took Benadryl the last 2 nights, squirting it onto the affected area of my tongue, as I’ve been told to do (this is also unusual for me–I am extremely judicious with Benadryl, only taking it when absolutely necessary) and the swelling still hasn’t resolved. I can’t remember another time it lasted this long — maybe, again, 17 years ago during anaphylaxis.

Then yesterday afternoon, I was hit with vertigo after spending too much time on my feet, preparing food. Vertigo is rare for me and is a big red flag. It’s very different from dizziness and I don’t think it has anything to do with blood pressure. I went to bed for a while, hoping it would resolve, but, when I got up, I was still slamming into walls, as if I were walking the hallway on a lurching boat. The last 2 times I experienced vertigo were 5 months ago during–shocker–my period and a year ago on the morning we were leaving for California, after killing myself the day before to finish packing. I thought it might be something to do with my neck, which always has issues, so I used heat, then my cervical traction device, then an ice pack. I think it helped; the vertigo had mostly abated by the time I went to bed.

But…

A few hours after I went to sleep, I woke up with horrible shakes and chills and drenching sweats. My BP was low (but low-normal for me: 80/50), HR was a little high, temperature was 96 degrees, and O2 was 95%. It was 7 terrible hours that felt viral, like when I first got sick, but was probably mast cells, what with the swollen tongue and all. I finally got up to do that thing that other chronically ill people might understand: put on clothes in case I had to go to the hospital. On a normal day, I might sit around in my dressing gown with unbrushed hair all day, but when there could be a chance I’m going to the hospital, I try to make sure I’m not naked. I also make sure I’m not wearing anything I care about — I’ve lost clothes in the hospital before.

Strangely, I had almost an identical episode on this exact day last year. Here’s a screenshot from my calendar:

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After the most stable autumn and winter I’ve had since being sick, this downturn–this piling on of relatively rare, red-flag symptoms–scares me. My sleep has gone to hell in the last few weeks, which compounds everything by stealing energy and increasing pain. Plus, I’m exacerbating things by holding tight to my “best winter yet” narrative and by fighting so hard to maintain the level of functioning I’ve had this past year, rather than pulling way back and resting aggressively.

My ND says the naturopathic philosophy is that you will go back through previous stages of health and experience earlier symptoms as you travel the healing journey back to where you once were. I’ve latched onto this theory to anchor myself and dispel some fear. The resurgence of all these old symptoms means there has been a shift in my system — but maybe it’s a positive shift, even though it doesn’t feel that way. I’ve gained weight since starting IVIG, over 8% of my norm, which is not insignificant, especially on someone as small as I am. I’m at my heaviest since being sick and, although I’m not overweight, I’ve lost muscle tone the last 7 years and I don’t have the physical ability to burn fat and build muscle, so I hope this trajectory doesn’t continue. My doctor thought this, also, pointed towards a shift in my body: maybe I’ve started absorbing nutrients better. Acne is coming back a little, too. Maybe my hair will grow back! Or the next thing will be that I’ll catch a cold for the first time in 8 years… (And because I really don’t want this to happen, no matter what it might indicate about a calming immune system: knock on wood, toba, toba, spit over shoulder: patuey.)

But, as I lie here, shaky, with my swollen tongue, chronicling these last few weeks (minus the osteoporosis diagnosis and extremely elevated post-antibiotics SIBO test results, both of which I’ll have to write about at a different time), none of it feels like a positive shift and I worry about what I should eat so as not to add to mast cell reactivity and whether I should stay in bed and lie still, even though longed-for Seattle sun is streaming through the windows and I’d love to make some breakfast and sit at my table watching Riley lounge in the grass, soaking up the rays, and the hummingbirds diving around our feeders.

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I Found My Worst Nightmare

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On this day four years ago, Facebook reminds me, we were shopping for a recliner. I’d been sick one month. I’d seen my endocrinologist, assuming that the low-grade fevers, violent chills and drenching, shaking, sleep-murdering night sweats were something to do with my post-ablative hypothyroidism. I didn’t go to my GP for another few weeks, only after every Google search of my symptoms came up with malaria and I started to wonder, what if?

I’ll never forget the feeling I had that day. It was a Saturday and I’d gotten up early and gone to a “Pure Barre” exercise class — my knee-jerk response to not feeling well was to exercise more (ignorant and hopeful during that first year, I booked three yoga and exercises courses and was never able to go once). I remember leaving that class and calling my husband in tears. My body responded in such a violent way, I could barely walk. I sat in my car for half an hour before I could push in the clutch.

I was in a daze when we were looking for a recliner later on the same day, shuffling around the stores, feeling weak and fearful of whatever the hell was happening to me. I remember acting like a caustic recluse when the salespeople wanted to engage me in their spiels, giving my husband that look that said “get this person away from me.” I joked about my outfit in this photo, but in reality I couldn’t shower or change before we went shopping — it was too much energy — and that was such an alien thing for me that I had an overwhelming feeling of doom. In truth, as much as I hoped it was my thyroid, I knew as soon as this illness started that it was something bigger.

Today I feel worse than I did that day. There was no pain then, no sore throat, no daily headaches, no brain problems, no muscle wasting. I still had a job and friends, I still drove, and ran around in the dog park and laughed every day. Sometimes I can’t believe it. Every day for over four years? Isn’t it meant to plateau? Am I not meant to acclimate and get used to this? Find a quality life somehow? I don’t hope to feel good again… not even average… I just hope to eventually get to a place where the good outweighs the bad and makes me feel like it’s worth continuing this fight.

P.S. To all my friends who have been doing this longer than I have, you inspire me to continue the fight. ❤

Update… Aborted. Again.

I’ve been trying to write an update for so long. It’s been 5 months since my last one. There’s been so much that I wanted to document, that it started to feel like a Herculean task to catch up and my symptoms have been such a rollercoaster, that I never seem to find an opportunity. When I have some respite, I cook, bathe, deal with insurance and appointments, tackle laundry, play with my dogs, sort through finances etc. Aaannd… I just hit a wall. Just like that. As I typed, I could feel my brain clogging up. I picture all the little ATP molecules grimacing, gasping and dragging their feet like the characters at the end of Stephen King’s story, The Long Walk, dragging themselves along until collapse is inevitable. It’s a shocking feeling. Mentally, I was really clear for about an hour this morning. Felt like I could write. Dreamed up grand plans for my day (make granola! call a family member! blog post!). I answered a few emails, talked to my husband a bit and then wrote this… And it’s gone.

My neurological symptoms are horrific. “Brain fog” is the best of it. I’d take lack of concentration, not being able to find words, memory problems any day over what I’ve been experiencing this year. It feels like physically–physiologically–my brain grinds to a halt. My eyelids get heavy, my vision gets blurry, my ears roar, I start slurring. As I’m writing this, it’s getting worse and there’s no pushing through. My body feels okay, my stiffness, weakness and pain levels are manageable this morning, but I can’t push through this neuro stuff. Even if my body feels capable of going to the park, my brain insists on being in bed with ear plugs and eye shades. I can’t even watch dull tv or listen to a meditation. It’s incredibly frustrating and quite alarming. And, in a clinical way, I am fascinated by the trajectory of my symptoms over the past four years.

Year 1 was horrific viral, malarial, drenching sweat, nighttime hell and constant chills. That ended for the most part in Year 2 and became predominately “nightly flu” and pain, pain and more pain. Year 3 was the best of times and the worst of times: a bedbound, suicidal winter (when I finally got the permanent ME/CFS sore throat) turned into a much more stable spring and summer after my pain eased up. Year 4 started in a deep, reactive crash and became the year of crippling neurological symptoms. Year 5 (which started at the beginning of this month) so far is all over the place. My main focus is to work on the symptoms that have been with me throughout all of these years: sleep dysfunction, headaches, hypotension and infections. Plus, social contact would be good.

I have to power down now. The long-awaited update will come soon, I hope. I have so much to say.

Throwback for ME Awareness

To acknowledge the last day of M.E. Awareness Month, I am reposting an excerpt from my diary from three years ago. I had only been sick for four or five months, I had no idea what was going on and felt for sure it would kill me.

Muscles pumped full of lead ~ No. Heavier. Plutonium. Filled with liquid hot metal until they might burst. Heavier than anyone can imagine, aching, ready to strain, buckle, seize up. Ready to sprain with the slightest stretch, no tone, no strength. Climbing stairs is climbing Mount Everest. Slurred words, room spinning, head aching, chest tightening, heart leaping, entire body shaking, vibrating. Chills. Bone-chills. Shivering, unable to talk, nose going to fall off, can’t breathe, feet going to fall off, ice water running up and down my spine, head fogged over with frost, scalp taut, ears infected with cold, ice water spine, ice water spine.

Then, fever heat. Body on fire. Feet going to explode from the pooled blood, eyes burning, brain swollen. Spine and neck blistered with white-hot embers, waiting for bed to burst into flames. And the sweats come. Sweat running down my chest, pooling in my belly button. Sweat behind my knees, my lower back, above my top lip, in rivulets down the sides of my nose, my hair and the base of my skull drenched. And I’m shaking, reaching for water. I don’t want to die. My palms are sweating and my throat is sore and I’m so thirsty, but can barely drink. I have to go to the bathroom, but don’t think I can make it. I have crawled to the bathroom with concrete blocks tied to my arms and legs, while someone is spinning the room around me and zapping me with electrical current and blowing a dense fog ~ more like a smoke ~ into my ears and up my nose and down my throat, so I can’t breathe and I can’t think.

It feels like what I imagine encephalitis must feel like. Meningitis. Botulism. Typhoid. Consumption. It feels malarial, paralytic, neurotoxic. I just keep thinking, I don’t want to die.

Two hours ago, I was chatting on the phone to my mother. I was throwing a ball for my dogs. Without warning, I have to go to bed. It’s like a huge finger is pressing down on me and all I can do is go to the ground. If I try to get up, the whole hand holds me down. Huge hands holding me down so that every movement takes more energy and effort than it ever should or ever has before. I watch someone run up stairs on tv and my eyes tear up with desire and jealousy. All I want is to be able to stand for a while, laugh without noticing because it’s not a rare occurrence, talk with friends without my throat turning into sandpaper and my back seizing up and having to go straight to bed from the exertion. All I want is to sleep. Deeply. Without nightmares. And sit without pain, walk without breathlessness, feel light again, like those hands aren’t holding me down, like I could skip or twirl. All I want is strength, stamina, health. To live life without the fear of repercussions. To live life. To not die.

Thanksgiving Tsunami

The last 10 days have been a bit harrowing. Different symptoms crashing down like waves each day. First let me tell you about our early Thanksgiving dinner with just the two of us.

Everything was made from scratch with the freshest ingredients. The only thing we didn’t do is grind the almond flour ourselves. Here’s what we had:

The turkey was pastured, free-range, organic, fresh (not frozen) from Rain Shadow Meats, our specialty butcher here in Seattle. They had 400 turkeys in a truck parked outside their shop and my husband tells me it was a chaotic scene picking it up. The smallest bird they had was 12 pounds and we didn’t want to store it, waiting for Thursday because of histamines, so we put it in the oven as soon as my husband got home. He roasted it upside down, so it’s a funny looking photo (and these aren’t the greatest photos becasue it was dark in our house):

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I eat roasted root veg and mashed sweet potatoes and Brussels sprouts and other green veg all the time, so I decided, for a treat, to have a “stuffing” and cranberry sauce to go with my turkey, while my husband made himself potatoes and corn. The stuffing was based on Mickey Trescott’s recipe, but I left out the mushrooms and cranberries. I added fresh rosemary, parsley and a few cut up dried cherries for a zing every few mouthfuls. I also made a paleo “cornbred” (no corn in it, but it has that grainy quality from the almond flour) and added cubes to the stuffing becasue — stuffing without bread in it? Really?

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The bread itself was delicious and I had a piece slathered in butter, while my husband got to eat those soft, squishy pull-apart rolls that I love so much.

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I also made cranberry sauce from fresh, organic cranberries, fresh ginger, apple juice, orange juice and a touch of honey. I have never made cranberry sauce before and had no idea how easy it was. Why would anyone buy it in a tin?

IMG_20141123_184912 The gravy was made from chicken bone broth, herbs and onions. You blend it with a hand blender and the onions thicken it.

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All in all, it was a lovely meal and would have been even lovlier if we had been surrounded by friends and family and laughter and chatting.

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Then the tsunami hit.

12 hours after I wrote my last happy, chatty post, I awoke from sleep at 3am, the sickest I have ever been in my life. I know there’s a lot of “sickest I have ever been”s in my world, but this truly was. Not once, in 3 years of ME, when all my worst symptoms happen at night, have I woken my husband to help me. Well, Sunday night, I had no choice. I crawled on my hands and knees to the toilet, shaking violently and drenched in cold sweat. Cold sweats are diffferent than the night sweats I experience. They are what happens right before I collapse with vasovagal syncope. So, it scared me. I thought I was going to lose consciousness at any moment and I was so parched I needed water asap. I crawled back to the bedroom and got my phone and woke my husband sleeping downstairs. He got me water, salt, my blood sugar tester, my blood pressure monitor, thermometer, charcoal and Benadryl. I didn’t know what was happening, honestly. How could this be a reaction to the healthist and freshest Thanksgiving dinner I’d ever had? What has happened to my body that I now react to anything random?

All my vitals were low, but not low enough to be causing the sickness. Once again, I felt poisoned, only this time I hadn’t taken Cromolyn or any other new drug or supplement. My gut told me it was the onion gravy. It was a lot of onions and I know I have digestive issues with raw onions. It could have been a reaction to the onions themselves or it could have been a form of sulfur poisoning. The meal was very sulfur-heavy and I know my CBS mutation* causes problems because it’s shown up in my ammonia, taurine and homocysteine blood tests.

Yes, when it comes to histamine, it could have been the small amount of orange juice in the cranberry sauce or the few dried cherries or, if you belive my nutritionist, the caulifower in the stuffing, but I don’t think so. I eat dried fruit every day and I’ve eaten an orange without problems. Besides, it didn’t feel like one of my histamine reactions. It was much, much worse. If it wasn’t onion/sulphur poisoning, I would say it was the almond flour. I have reintroduced almond butter, but not almonds themselves or almond flour.

I never got back to sleep that night and rested carefully the whole of Monday. After saying in my last post that no matter how I’m feeling I make it to see my physical therapist, I had my husband call and cancel our appointment that day. I ate like a shaky, poisonened sick person, trying to choose foods that would have the least impact on my body in every way,  but this started the next symptom wave: blood sugar issues. I had rice, carrots, cucumber and sweet potato for breakfast. My blood sugar was 70 before I ate and 170 an hour after I ate. I had a chicken salad, parsnips, butternut squash drenched in butter, but stayed away from the chips and chocloate and broth I eat every day.

Tuesday, I was 2 pounds lighter — after one day of not eating the high-caloric crap I snack on to maintain my weight. And my blood sugar continued to crash. After years of hypoglycemia, I can usually feel the shakes when my sugar drops into the 70s, but it dropped into the low 60s a few times before I caught it. I increased my protein and starchy veg, I added olive oil, plantain crackers, fresh herbs and lots of pomegranate. I even had to go downstairs to the kitchen at 1am, after I had brushed, flossed and had my mouth guard in to cook up a beef burger and sweet potato. Exhausting.

Wednesday, I felt more stable, but very ME-ish: a bad headache and my spine and muscles felt infected and swollen.

Thursday (Thanksgiving) brought on the next new symptom wave: my blood pressure kept tanking alarmingly. No matter how much salt I ate or electrolytes I drank, with legs up and compression stockings on, it would not come up and stabilise. The best I achieved was 83/55.

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My Riley always knows when his Mama isn't feeling well. <3

My Riley always knows when his Mama isn’t feeling well. ❤

This continued on into Friday and, then, towards the end of that night, my whole body was in pain – joints and muscles – which I haven’t experienced in quite a while. My back and my hands felt arthritic.

Saturday, my blood pressure was better, but then came the sore throat and hoarse voice, making it difficult to talk. That night, I awoke 3 hours after going to bed with night sweats and never went back to sleep.

Sunday came a wave of neurological symptoms: poor cognitive abilities, worsening tinnitus, slurring my words, weak muscles, droopy eyes, my numb “buzzy head” symptoms (which signal I need to basically ctrl+alt+delete my brain immeadiately) and a cracking headache.

Monday, my throat and head pain had ebbed, but now it was my heart’s turn. It was hammering all day and fit to burst whenever I moved.

These last few days have been menstrual hell, which is generally an increase in my typical ME symptoms. I would honestly take all the other (probably more dangerous) reactions over the ME-inflamed, painful, exhausted days that feel like someone has pumped every muscle full of poisonous led…  These are symptoms I can’t fight through. There is no remedy, no relief. They make me feel like I cannot go on living if they are prolonged and they affect my mood horribly. I can’t see the light at the end of the tunnel, and I get scared and weepy.

But, the good news is, today I’m stiff and crampy, but better, although the insomnia and nightmares have continued all week and I’m in desperate need of a decent sleep. I’ve been eating a very low-sulfur and low-histamine diet since the sickness that kicked this all off and am completely fed up with squash, lettuce, sweet potato and parsnip. My kindom for some kale! Never thought I’d say that. I tested the turkey, turkey bone broth and orange with no reactions. I tried the almond flour bread, but it was inconclusive (this time of the month caused confounding variables), so I might try again next week. I ate a lot of almond butter with no problem and, today, I had cauliflower (my first sulfurous veg in 10 days) with no problem. I still have to try the stuffing and cranberry sauce, but continue to suspect the onion gravy. Such detective work!

The even better news is, we managed to get out to the cemetery for half an hour to watch our pups run in the thin dusting of snow (yes, SNOW!) and, for that, I am truly grateful.

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Onwards and upwards. I hope things will ease up until after Christmas.

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*”Increased CBS enzyme activity would act to convert homocysteine more efficiently to cysteine, thereby lowering homocysteine levels. Ultimately individuals with the CBS C699T upregulation of the CBS enzyme can generate more sulfur breakdown products with potential sulfur toxicity issues, enhanced ammonia production, and a lack of glutathione.” ~ Dr. Amy Yasko’s book, “Genetic Bypass”

Día de Muertos

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I can’t remember what was on tv. I was listening casually while I sat writing Christmas cards on the other side of the room. I had five half-boxes left over from the years before and I was determined to have all of them written on time because I’m notoriously late with cards. I decided to start writing them on Halloween night because I could see our gate from the dining table and, when the kids arrived, I could dash outside with the bowl of chocolates before my dogs heard anything and went into cacophonous protection mode. I was hunched over, scribbling and, when I straightened, I felt this ripple go through my body. I’ll never forget that feeling. Like a ghost had walked through me. Like unearthly cold hands had reached inside my body and stroked downwards, from head to toes. A momentary shudder through my brain and nervous system that I never imagined would settle into each muscle and fiber, growing, mutating, eroding. I think of it now and wonder what was happening on a cellular level while I was nonchalantly scribbling notes.

I said, “Oh, I’ve been at this too long” and went to the armchair, curled up fetal, and fell asleep. An hour later, I awoke and knew something wasn’t right. Although it hadn’t really started yet, it felt more serious than a cold or flu. I felt unstable on a systemic level and thought it might turn into one of my syncopal episodes where I would collapse, pale and clammy, with a barely detectable blood pressure and pulse. I said to my husband, “You have to come to bed now. Something might happen and I won’t be able to make it down the stairs to get you.” Those were the days when we used to share a room. Before my illness became my bedfellow.

I spent the next four hours colder than I’ve ever been in my life. I was fully dressed, in bed with a hot water bottle, teeth chattering, shaking so violently, little moans were squeezed from my chest. I vividly remember the eternity it took me to move my hand out from under the duvet in an effort to cover one freezing ear. I thought if my hand left the relative warmth of the blankets, it might freeze solid and shatter into pieces. Oh shit, shit, shit. I’m sick. This is a doozy. I couldn’t ever remember having something like this, but it reminded me of my husband’s horrid battle with chicken pox. He was the sickest person I’d ever seen.

I drifted into sleep, curled in a tiny ball against the headboard, holding my knees, and, when I woke up, I was drenched. I had never experienced even slight night sweats and I couldn’t believe my body contained so much fluid. It was as if someone had poured a bucket of water on me. I could slap my stomach and make little splashes of sweat. And I was so relieved. I had assumed I would battle this virus for days, but the fever had broken after only a few hours and it would be a quick recovery. How could I imagine that I would continue to experience this almost every night for the next two years, losing lifeforce into my bed sheets, becoming weaker and weaker?

I spent the last of the night drifting in and out of fever dreams, waking up intermittently, sweaty and shaky. My husband snoozed peacefully beside me. At one point, my bowels cramped up and I wondered if it was just some atypical food poisoning event. In the morning, I decided I was on the mend, showered, got dressed and went to work. Because that’s what you do… So, that’s what I did. You’d have to be on your death bed to call in sick and, besides, I wanted to save my days off for Christmas.

*****

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I’ve thought about that night a lot over the last three years. The moment my immune system shifted permanently. My utter naïveté about what could happen to a body. Although I’d taken many premed classes and had quite a few health problems in my life, it really never occurred to me that I wasn’t unbreakable. Or, at least, if I broke, I assumed I’d be able to be fixed if I put in the work. I had been diagnosed with Graves Disease a few years earlier, told it would kill me without treatment, had radioiodine ablation on my thyroid and had to avoid people for two weeks. And, during all of this, I never took a day off of work. It also never crossed my mind to get a second opinion, talk to others with the same condition or change my eating and sleeping habits. I just popped the radioactive pill and got back to work. The same month, I was told I had reactivated EBV by a naturopath and was advised to cut back my work schedule from 55 hours a week to 20… Ha! I’m sure you can guess how that went. I never saw that doctor again. I was too busy.

I had never been intimately exposed to chronic illness, so I was completely ignorant to the toll it could take on a family. I imagined it would be hard, of course, but you can never understand without experiencing it. Everyone in my family is healthy, even my extended family. We have our demons, but they’re addictions, mental health problems, typical old age conditions. I had my first major bout of angeoedema when I was 23 and went into anaphylaxis for the first time when I was 28. My siblings are all in their 30s and 40s and haven’t had more than the occasional cold. My parents are in their 70s and both still work and are active and social.

I was a sick baby. People would famously stare at the itty bitty girl with the old man’s cough. If I’d understood what could happen to a body, if I’d been less in denial, if I’d been less concerned about proving my bullet-proof toughness, I might have looked back on my childhood and my chest infections, thyroid disease, vasovagal syncope and all the symptoms that turned out to be mast cell activation disorder and tried to make changes to protect myself. If I’d understood what can happen to a body, I might have tried to nurture what was obviously a sensitive system, armour myself against external assaults and preserve what was still working. I could have eaten food that didn’t come from a restaurant kitchen. I could have taken a vitamin once in a while and stopped drinking all of my water out of cheap plastic bottles. I could have made sleep a priority, quit smoking and drinking sooner and not married a job that turned a run-of-the-mill control freak into a spread-too-thin obsessive perfectionist, trying to do all things, everywhere, first and best.

It’s been exactly three years since M.E. shuddered through my body and I wonder if I’ll ever stop thinking about the life that I lost that day. I would take all of my previous health conditions over this one. It was like a death: of my career, of my strong body, of ignorant bliss, and of our future dreams. I think about the months leading up to it — the blatant warnings of a body in crisis that I chose to ignore. There was a nagging voice in my head that pushed me to make a will, living will and power of attorney the year prior, at the age of 36. That same voice made me insist on a quickie marriage in the back garden after my husband and I had been together 13 years. I wanted him to be able to speak for me if I happened to be incapacitated and have legal recourse and rights if I died. I did everything I needed to do for luck: old, new, borrowed, blue, coin in my shoe… We signed the papers on the patio table and, half way back to the kitchen to grab our lunch, I remembered the last thing needed to insure we didn’t jinx our new life: he carried me over our backdoor threshold. We didn’t tell anyone because we thought we’d have a proper ceremony with friends and family in the next year or two — maybe in Ireland or somewhere exotic on a beach. It was exciting to dream up plans for a wedding after so many years together. That was 44 days before my Halloween sickness.

My life feels like one of those Choose Your Own Adventure books that I adored as a kid.

Move back to Ireland after college, turn to page 63 or drive across America to Seattle, turn to page 82.

Work your way up the restaurant corporate ladder, turn to page 103 or go to grad school for nutrition and dietetics, turn to page 123.
 
Jump in the lake in Virginia, just once, for only a few minutes, turn to page 146 or stay dry and don’t catch whatever is going to land you in the ER, wipe out your gut flora and set your immune system up for failure, turn to page 160.
 

Run into Walgreens on the way home from work and get a flu shot, turn to page 184 or keep on driving and live the rest of your life never having heard of myalgic encephalomyelitis, turn to page Happily Ever After.

I know, I know. You want to say it might have happened anyway. But it wouldn’t have. And you want to say I’ve got to stop ruminating over the what ifs and focus on the present. But it’s the Day of the Dead, a time to remember the dear departed. So, today, three years after the specter came to stay, I will think about the woman I lost that hallowed eve.

HAPPY HALLOWEEN

I’ll leave you on a happy note. November 1st is not only the anniversary of the first day of my new life with chronic illness, it is also the anniversary of my first born son, Bowie, arriving in our lives. ^^

Poisoning Myself.

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Three days ago, after having Cromolyn Sodium in my cupboard for 19 weeks, I finally decided I was stable enough to add a new drug. Cromolyn was originally used as an inhaled anti-iflammatory to treat allergic- and exercise-induced asthma. The oral version of Cromolyn has been used more recently to treat mastocytosis and mast cell disorders. It is a liquid that comes in ampules and is mixed into water. The doctor who prescribed it for me is the same one that diagnosed me with MCAS, but he didn’t seem to know much about Cromolyn. The pharmacy knew nothing. I had to go online and ask the people in my mast cell Facebook group for details and then call the pharmacist and explain exactly what the drug was. I am so thankful for the knowledge of these groups and Cromolyn seemed to help far more people than it harmed. It also seemed pretty innocuous — I only talked to a few people who had major side effects and they were things I don’t typically experience, like itching and nausea.

Of course, there’s always a part of me that is looking for the magic pill. Imagine I started this drug and my mast cells calmed down and symptoms I didn’t even realise were caused by them disappeared! … But, it still took me almost 5 months to convince myself to take it. It wasn’t until my bowels went into hibernation that I decided to take the plunge. A few weeks ago, motility stopped, gastroparesis reared its ugly, bloated head and everything ceased functioning in my intestines. No movement, not even a fart, and mega doses of magnesium and vitamin C weren’t doing anything. Cromolyn can help these internal inflammation symptoms and I had high hopes.

The dose I was meant to take was eight ampules in a day — two 4 times a day. The doctor never mentioned to work up slowly and some people in my online group were able to start at full dose. I wanted to be careful because we’re talking about my ridiculously hyper-sensitive body, after all, but I was pretty confident that I’d be fine. So, the first day, I took 1/3 of an ampule in the morning. The next day, I took 2/3 of an ampule in the morning. All seemed fine, so, that night before bed, I took 3/4 of an ampule. At 5 in the morning, I woke up sick sick sick. So sick. Sicker than I’ve been in years, maybe. Sick like my original sickness. Malarial. Encephalo-. Shaking all over, chilled, sweating feverishly, head pounding, stiff neck, muscles cramping, throat constricted, barely able to lift my arm or walk to the bathroom. Oh god, the FEAR. I’d rather die than go back to this. I felt like an ex-con in a movie choosing death-by-cop rather than go back to jail. My mind was like a panicked, caged animal, looking for a way out, falling in and out of fever dreams where I was screaming for my mother over and over again. I’d rather the “nightly flu” that I used to get. I’d rather the ME monster that slams me down with massive, pummeling hands, but I now know will release me eventually if I hold very still for a while. I think I’d even rather be back in December, 2013, when I called on all of you angels to get me through what I thought might be permanent bedboundness.

I felt poisoned. There’s no other way to describe it. I took my temperature: 98.4 degrees. My blood pressure was 80/55 (normal for me). My blood sugar was 80. Not much I could do but wait it out. I lay in bed the whole day yesterday, meditating, deep breathing away the fear of permanent relapse to an acceptable distance. I have a painful burn on my hand that is taking a while to heal and I kept falling into dreams where the burn was causing sepsis. That’s what it felt like — a systemic infection — I’d wake up panting and quiet my mind. I’m good at doing that during waking hours, but, in my dreams… I’m always silently screaming.

I feel a bit better today, but still didn’t sleep. I haven’t had a headache in a long time, believe it or not, and the pain is brutal. My muscles are aching and I feel swollen. The fear has dissipated to frustration. I’m frustrated with myself for trying another drug. I was doing so well. I had a lot of firsts the last few weeks (I’ll post about that later, but here’s a teaser: first time in a store, first road trip, first time on a beach in two years!) and then I couldn’t leave well enough alone and trust that my body was slowly, but surely, helping itself. I’m frustrated with myself for not going slower. I could have ramped up the dose over a full month, but I’m always so impatient. I’m frustrated that I’ve lost the potential help of Cromolyn. That was probably the worst reaction I’ve ever had apart from anaphylaxis, so I’ll never touch it again. I’m not even willing to try again going much slower, so I’ll never know if it could have helped. And that makes me frustrated because it was so hard to get it and it’s incredibly expensive and it’s such a waste. I have a friend who can take it off my hands, but, if I ever wanted to try it again, I’m out of luck because I don’t have insurance to cover it anymore.

And, in contrast to how I feel now, I realise how well I was doing. I was managing to do things every day — stand in the kitchen and cook for an hour, have conversations easier, wash and dry my hair without a thought. This weekend we have one last stab at summer — two days of high 70s and low 80s — and I was going to surprise our friends Z and J by going to their house on Vashon Island for the first time in years. I felt strong enough to do it and that was not even an option 6 months ago. Instead, I’ll barely be moving this weekend. But at least I’ll barely be moving in the garden, in the sun.