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.

Title Credit

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

Pandemic MRI Tips

Wednesday night, I spent 3 hours in an MRI tube getting brutal imaging done of my brain and cervical spine. In general, I actually enjoy MRIs — I find them soothing and almost always fall asleep (the keys to making it relaxing are really good earplugs and eye shades that you never take off) — but the majority of the scans I had done the other night were in extreme flexion and extension of my neck, so it was very uncomfortable. I didn’t get home until 10:30pm.

I’ve already seen the radiology reports and they’re not great, unfortunately. I hoped things would be stable, but there are further degenerative changes to my cervical vertebrae with herniations impacting my spinal cord. More concerning to me is the lack of CSF flow in my cerebellum (posterior foramen magnum) is still noted (was first seen in a previous CINE MRI two years ago) and now there also is restricted CSF flow in the cerebral aqueduct. This is probably being caused by low-lying cerebellar tonsils, which is probably being caused by my tethered spinal cord pulling down on my brain stem. It’s overwhelming. But more on all that some other time.

I had some thoughts about managing these sorts of tests, especially with covid concerns. I’m unvaccinated (inching closer and closer every day to taking that gamble, though), so it was especially nerve-wracking as I pictured Delta shedding off the MRI techs in thick clouds (during those 3 hours, they probably spent a total of about 20 minutes standing a foot or less from my face as they had to add and remove bolsters and adjust me in different ways. They were both wearing very flimsy surgical masks, like limp paper towels. No well-fitting N95s here. Shudder).

I should have asked the techs to back up because they really didn’t need to be so close, but… well, it’s complicated. It comes down to the really embarrassing fact that I think I’m trying to be liked. A people pleaser. I expend an enormous amount of energy during appointments because I always wind up chatting and making jokes and acting normally due to adrenaline surges. And, in this case, because I am so bloody complicated, I tried to be easy and low-maintenance when I was in the hospital.

The lead tech went to unbelievable lengths to help get these MRIs approved and executed properly. He talked to my neurologist, he got the appointment moved to the Northwest campus, he emailed me updates, he let me fax the orders and doctor’s notes to him since they were having such a hard time getting my doctor’s clinic to do it. He left his shift at the UW Medical Center and drove across town to do my scans (at night) to make sure they were done properly (which was good because the other tech had never seen anything like them — we did a dynamic motion series, which involved moving my neck/head fractionally from full flexion into full extension, stopping 16 times to hold still for an image to be taken).

The imaging orders took over a month to be written properly and get approved (one of the schedulers was almost in tears talking with me. She said, “I told my supervisor: ‘We need to get this done! Our motto is patients first. Help this woman!’ I was shaking!”), so the upshot is, I didn’t want to cause waves or be a pain in the ass by asking him to step way back. Really hope that decision doesn’t give me covid. But I’d already told him my immune system was compromised and I was unvaccinated, so I guess he must have been pretty confident that he was not asymptomatically infected. I’m feeling weak-willed, though. I advocate for myself at every turn and then I don’t make sure we’re distanced? Ridiculous.

Back to the reason for this post:

Oh, wait! I had the craziest thing happen. The tech stopped the imaging at one point and said, “There’s something metallic in your armpit area. Can you see what it is?” HUH?

I have my eyeshades on, so I can’t see and I’m fishing around in my armpit and I find a little metal stick. “What is this??”

The tech has come into the room and he says, “It’s a bobby pin!”

“But I don’t wear bobby pins, I swear!”

And he says: “Oh, you know what, there’s a chest pocket inside the scrubs we gave you because they’re reversible, I bet it came through the laundry.” WTF?

Sure enough, there’s a little pocket and I guess the bobby pin was sucked out of it and into the armpit of the scrubs by the giant MRI magnet.

And then what do I do? I drop it, thinking it’ll just fall on my stomach. Not sure why I did that, but I hear him say, “OH NO, DON’T” and, in a flash, the bobby pin has bulleted straight into my face. It stuck to my chin by one end, the length of it horizontal to the floor, like a teeny arrow. WTAF?!

It didn’t hurt because I had a mask on, which cushioned it, but I had no idea everything was so magnetized when the machine wasn’t taking images. I couldn’t help thinking: What if my eye shades were off and it had torpedoed into my eyeball?! Jeesh. Luckily, we all got to laugh about it.

Ok: 

Here are my top tips for getting an MRI during a pandemic when you’re unvaccinated and your immune and autonomic nervous systems are haywire:

* You can’t have metal in an MRI machine, which means removing the nose piece from most masks. I didn’t want to wear my Cambridge or Airinum masks because I wanted something disposable (albeit an N95 rather than the equivalent of an N99 in the case of the cloth masks). I taped the mask all around my face with paper tape because, without the nose piece, it didn’t fit well. The paper tape was a bitch to get off and stretched my skin off my face alarmingly, but, hey, better than covid. I had a face shield, but didn’t wind up wearing it since I had to take it off as soon I got in there. I also put a surgical mask over the N95, which was undoubtedly useless, but I felt better “double masking.” These N95s are legit (I called the company, Kimberly-Clark and they gave me the Amazon link) and even though the duck bills look silly, they are much easier to breathe in. After being in the MRI tube for so long, I was really happy not to have one of my heavier reusable masks on. 

* These are the other precaution suggestions I’ve collected over the past year: Some ME doctor (Klimas?) said xylitol nasal sprays can help in a protective sense before possible exposure and saline nasal rinses might help afterwards. I also bought Nasal Guard (a gel that you put around your nostrils and mouth that might catch allergens/germs before they enter your airways) and Nasal Screens (little sticky “filters” that cover your nostrils). You could also use WoodyKnows filters, but I can’t seem to get them to stay in my nose. So, during my MRI, underneath the taped-on paper N95 mask, I used the nasal screens and gel.

* Make sure to bring good earplugs. They have some for patients, but a) who wants to use the hospital ones? and b) they are never good enough. I like these chunky foam ones that expand to totally seal my ear canals. They don’t cost much for a huge box (I wear them to sleep) and I cut the ends off of them, so it’s not sore sleeping on my sides. Make sure you know how to insert earplugs. I literally needed a lesson: roll them in between your fingers until they’re as skinny as possible and then put them into your ear (you can pull down on your earlobes to get them further in) and then gently press the outside to keep them in place as they expand. These changed my sleeping life. After hours, the pressure inside the ear canal can get sore, but your ear toughens up pretty quickly if you stick with it. Anyway, they are a necessity in an MRI because the headphones do sweet FA. Plus, in my case, I couldn’t wear the headphones in any position except neutral. 

* I usually bring my own eye shades, but because of covid, I used theirs, which are in a plastic bag and disposable. They smell new-plasticy/nylony, but, with my mask on, I didn’t notice. Like I said, put them on before you’re moved into the MRI tube and then DON’T TAKE THEM OFF. You don’t want to see how close the antenna (face cage) or the walls of the tube are to your nose. It breaks the “I’m fine” spell and can freak you out. MRI machines these days are pretty roomy and they have cool air blowing, so you really wouldn’t know you’re in a restricted space as long as you don’t look. (Another tip: you can ask them to turn the blowy air up or down.) I had to move the padding under my head and shoulders over and over again for the different positions and my elbows kept hitting the walls of the tube, which is a sure way to break the spell that you’re lying on the beach, just fine. Luckily, I don’t have claustrophobia. For the dynamic scans, the tech asked me to just leave my arms above my head, which was the only time I felt slightly unnerved because it was so cramped (back arched, neck in extension, arms above head, but not too bent because he didn’t want me to touch the tube and create some sort of looped current or some shit. Yikes).

* If you’re getting an MRI, ask for it to be done on a 3T machine, so you have the best quality images and don’t have to redo them.

* If you’re getting a supine cervical MRI ask to add in flexion, extension and rotation, so you (hopefully) don’t have to do an upright MRI (agony), which the tech called “garbage” since they are done with a 0.6 Tesla magnet (most neurosurgeons prefer 1.5T or higher).

* Find out the location of the 3T machine. In my case, I could get them done at a company called CDI, which is right by my house and it’s inside a small imaging clinic versus a hospital (less covid risk). But, it turned out, the 3T machine was in Bellevue (much further away from me) and would involve my husband taking the day off of work and sitting in a lot of traffic etc. I was switched to the University of Washington Medical Center, but the radiology suite is a long walk through a big hospital and would, again, necessitate my husband leaving work (and expose himself to covid risk) because, although I could probably drive there myself and walk to the MRI, I didn’t know how the flexion and extension would hurt my neck or exacerbate my symptoms and there was a chance I wouldn’t be able to walk back to my car and would need a stranger and a strange wheelchair. Or I might not be able to drive myself home and would be forced to get an Uber. Hell no. Ubers were bad before covid.

More importantly, the other location option — UW Northwest — is a few minutes from my house and I already know that the 3T machine is in a quiet building, separated from the hospital and that the MRI room is literally a few steps down from disabled parking, which is always empty. It’s a small suite and it’s always been just me and the tech every time I’ve been there. Last time I had an MRI at the big UW Medical Center, there were dozens of people teeming around and I had to wait for over two hours because of a backlog of scans. 

* Ask for an appointment on a weekend and/or the first appointment of the day and/or the last appointment of the night to avoid humans.

* After you check in, wait outside, if you can. For those in my area, this is really easy at Northwest Hospital. They just pop their head out the door when they’re ready and I’m right there at my car.

* Wear hardly anything. I left everything I possibly could at home. Jewellery, purse etc. I only brought my phone, hand sanitizer and my emergency MCAS stuff that I bring everywhere. I wore nothing but underwear, a long skirt pulled up to be a “sun dress” and shoes.

* If you are getting any imaging done that involves different positions, bring something for support and bolstering of your skull and neck. I brought a big pile of washcloths from my house so I wouldn’t be using the hospital’s foam wedges. I rolled them under my head and neck to help with the flexion and extension images and under the sides of my face to give support when my head was in rotation.

* Ask the MRI tech to let you know in advance how long each sequence will take and whether you can move and adjust yourself. It can get sore staying so still, but every time you move off of the mid-line, they have to recalibrate the machine with a “scouting series.”

* Pretend you’re in a medical pod and the MRI is healing you. I usually drift off to some sci fi place, imagining all the blerp blerp blerp gramma gramma gramma patel patel patel noises are curing my disease. 

* I bagged the washcloths and my clothes when I got home so I could wash them later and took a shower. I also sprayed alcohol on my shoes and backpack. Oh and I used mouthwash for the first time in a decade and just hoped that I didn’t have some weird reaction to the alcohol/flavourings/colourings (I didn’t).

What I did wrong: I didn’t eat and drink enough before leaving. Everything takes longer than you think it will, it seems, and with a taped-on mask, there was no sneaking a lozenge or anything. I was parched and ravenous and wound up eating dinner at 11:30pm.

Meat Madness

9 weeks ago, (one of) my doctor(s) asked me to stop eating meat and a few other things because of a blood test that supposedly showed I was intolerant. I know many of you are vegetarians, but not I. Not ever. Meat is a staple, something easy to heat up and my main source of protein. Also, so much food waste. Jars and jars of bone broth and meaty meals in my freezer. I cried on the phone with her, but agreed to try because why not? I have been doing so poorly lately that my husband has gone off to the Sunday farmer’s market to get me a chicken in case this elimination is contributing to my symptoms.
The problem is… when a doctor tells you you are intolerant to something, it worms its way into your brain and sets up camp in the deep recesses, causing a bit of almost-imperceptible anxiety when you eat the thing in question. It happened to me when IgE blood tests showed I was allergic to eggs and tomatoes. They didn’t show up again on subsequent tests and I eat eggs all the time now, but there’s always a tiny voice hissing, “Is this egg contributing to your issues? Don’t eat too many!”
It’s the same thing with that dangerous and evil AIP diet. It was bad for me and I’ve been eating grains, dairy, legumes etc. again for years, but … but… all the stuff you’ve read just sits in the shadows of your mind, whispering: “Is this making you worse??” And that’s even when the grains are gluten-free, the dairy is organic and the legumes are soaked. Fuck sake.
So, anyway, we’re roasting a fresh chicken for lunch and we’ll see how it goes. Fingers crossed it doesn’t make me worse. Or, if it does, that I recognise and can identify it, because god knows I’m an expert at ignoring any reactions so I can continue eating my favourite foods.

Body’s in Trouble and SIBO Test From Hell.

I am going to document this swiftly before the whole horror fades under the sweet joyous glow of sugar and carbohydrates. Besides the first few years of this illness, which has its own special place in the Hell Hall of Fame, the last few days preparing and preforming the SIBO test might have been the worst 50 hours of my life. There are 2 close seconds: the aftermath of a lumbar puncture, which gave me the 10 on my pain scale to which I compare all else, and a particularly harrowing bout of food poisoning, which I suffered alone on my brother’s bathroom floor for a few days, thinking I might die. But this weekend was worse than both. But let me back up.

My symptoms have been bad since coming back from California, particularly the last month. Immediately after our return, I had to contend with my period, which heightens everything a notch, including emotions. My husband went straight back to work 7 days a week to catch up with his landscaping jobs and the renewed isolation, plus being trapped indoors because of the chilly, damp weather began to take their toll very quickly.

IMG_20170517_163040_023

A week after getting back to Seattle, I got the tests done for Dr. Kaufman (the California doctor at the Open Medicine Clinic). I had 39 vials of blood taken in 2 days — the first day, we did 9 vials, but my blood sugar crashed, so the second day we went back downtown and I did the other 29 vials. I completely underestimated the toll it would take. That evening my blood pressure tanked and I didn’t feel good. It took a few days for the effects to wear off. Just in time for family to come over for my birthday brunch, which caused a bad (but short-lived) crash (I already wrote about this last month).
IMG_20170518_022222_247

Two days after that, I started to get a throat thing… one of those feelings that, in my old life, would have made me think I was getting sick. The last time I was sick — normally sick with a cold and bronchitis — was almost exactly 6 years ago. That boggles my mind. It is, of course, because I probably have immune activation, but it is maybe even more about being housebound, wearing my mask when I go to appointments in the winter and not letting sick people come into my house. So for 3 days I felt like I had strep throat, was completely couch-bound, stiff, sore, swollen and had a tight chest just like it used to feel before I got a chest infection. For 2 nights I slept over 8 hours, which should tell you right away I was being beat down by something different because I’m lucky to ever get more than 6 or 7 hours sleep. These symptoms of acute sick on top of chronic sick scared me. I have read so many stories of relapses and crashes caused by a common cold. I haven’t had any lung issues since the first year of this illness and, as a previous asthma/bronchitis/pneumonia sufferer, I am incredibly thankful that I don’t contend with those symptoms. So, I hit it with every tool in my virus tool kit, including IV fluids (so brilliant to be able to hook myself up to fluids; see my first time here) and it didn’t progress to a full-blown cold or flu.

The day I started to feel better, I did an immunoglobulin infusion. From that day on, I’ve had a headache. It has waxed and waned over the last 3 weeks, but yesterday it was in the top 4 worst headaches of my life. More on that in a minute. I’m not finished with the litany. A few days after the infusion, I stopped taking all of my vitamins, supplements and even prescriptions that aren’t essential. I needed to come off my candida treatment for 2 weeks before doing the SIBO test, so I just stopped everything. I thought this would be a good break, but in retrospect, perhaps it contributed to this past Very Bad Fortnight.

One thing I did not intend to discontinue was my hormone therapy but my doctor refused to call in my compounded progesterone prescription because I hadn’t seen her in person in 4 months, so I had to abruptly stop it in the middle of my cycle. Maybe it’s no big deal, but I’ve been taking it for years and it regulates my periods and calms my reactivity, so messing with my body and, more importantly, the difficulty dealing with my doctor caused a lot of stress (I didn’t want to see her until I had the test results back from the 39 vials of blood, so I implored her to extend my Rx, but it took her too long to answer and my period decided to come and then she only called in a few to tide me over until our appointment, but they wanted to charge me $2.50/capsule for such a small order, so I just went to see her (there was no discussion of my hormones and no changes made, so withholding the refill felt like blackmail to get a very sick person to make an appointment). Then it took 3 more days after our appointment for her to call the progesterone into the pharmacy… so I was ultimately off of it for 2 weeks. Sigh).

Speaking of my pain scale, the week before last I had a bowel spasm that was a 9. My first 9 since The Evil Calcium Headache of 2012. I have experienced a lot of bowel issues in my life — just the day before this spasm, I had experienced such vicious heart palpitations during an enema, that I thought I might collapse with vasovagal syncope — but I didn’t know this sort of pain was possible in the bowel. From an internal muscle spasm?? Seems far-fetched even now, having experienced it. It only lasted about 5 minutes, but for that eternity I couldn’t move from the bathroom floor where I had crumpled, I could barely breathe, I was making some weird, uncontrollable, primal, guttural, airless moan. If it had gone on a few minutes longer, I would have called an ambulance and probably would have agreed to morphine, even though I’m allergic to it. As soon as I was able to crawl, I did a castor oil pack and heating pad and the spasm eased up. The aftershocks and inflammation continued for days, however…

Right up until my period came and my chronic headache became a chronic migraine. The old kind that has me wincing at every noise and squinting at every light. The kind of headache that makes it difficult to move my eyes, like the extraocular muscles have swelled taught with inflammation. The kind that infects my neck and spine, so I can’t turn my head, bend over, cough, sneeze or poop without whimpering in pain. The kind that causes nightmares about loved ones getting their skulls bashed in and destroys sleep with constant throbbing wakings. The kind that causes my stomach to flip with every smell and my poor husband: “Please don’t put your foot down so heavily on the floor.” “Please don’t ever use that shaving cream again.” “Please don’t sharpen that knife or stir that pot.” “Please don’t smoke that cigar out on the porch because it sticks to your clothes.” … etc. I became very weak over the next few days, like the life-force was drained out of me. Muscles not working, hard to converse. This is a completely different feeling from my typical exhaustion or heavy muscles. This is how I imagine it feels if someone is on the ground, bleeding out.

And then, just like that, a depression switch was flicked in my brain. I’ve only been really depressed twice before, the worst was the winter of 2013 after I’d gone steadily downhill for 2 years and spent most of my time in my bedroom in pain. This episode wasn’t as bad as that — I am sustained by a bit more hope these days because I’ve had some staccato ups punctuate the continuous downs — but it still sucked. I’ve cried every day and had very black thoughts. The relentlessness of my symptoms have highlighted the improvements in California, making me terrified of what it means for our lives if my environment is keeping me sick. And the interesting/engulfing thing about depression is, it doesn’t matter whether you rationally know that things will be better on a different day or could be better in a different location, you still want to give up and end it all. Nope, can’t do this anymore, I’m too tired. And when that Black Cloud of Despondency starts to dissipate, like it has today (oh, thank god, please stay away), it seems ludicrous and selfish that you had those dark thoughts.

IMG_20140315_123845

SIBO prep meal

But let’s get to the crescendo… The last 50 hours… The prep for the SIBO test… If I was ever in doubt that my body doesn’t do well on a low-carb diet, this weekend proved it. It feels miraculous that I’m able to sit up and type right now, honestly. On top of bad physical symptoms, little sleep, no supplements and sadness, I started a 48-hour prep diet for a SIBO test ordered by Dr. Kaufman. SIBO stands for small intestinal bacterial overgrowth. I’ve done the SIBO diet and test once before and don’t remember it being very difficult (aside: my post is here and you can see that the National University of Natural Medicine has stolen my food photo for their website here, which I find highly amusing). For the prep diet, you are only allowed to eat meat, eggs, white rice and fats for 12 hours and then 15 hours of fasting, which doesn’t sound too bad except, if you are constipated (or in my case, the most constipated person I’ve ever met), you have to do the diet for 2 days before the fast. I eat all day and night — it steadies my blood sugar and maintains my weight — and, although I eat meat every day, I don’t eat a lot and I only eat about 2 or 3 eggs a week. So, this was hard. Friday night, I stopped eating at 1am. I was hoping I would wake up Tuesday morning without an appetite, which often happens in the mornings, but no luck, I was starving. I ate a scrambled egg with turkey. A little later I ate some rice and butter. Then chicken breasts. By the time my husband made some “meat broth” (no bones, cartilage, herbs or veg allowed), I was very nauseous — which is unusual, I have an iron stomach — but still hungry because I couldn’t physically choke down enough meat to fill me up and too much white rice without sufficient veg and starchy carbs causes my blood sugar to crash because of reactive hypoglycemia. The nausea was exacerbated by pain throughout my body, a pulled muscle in my back and my migraine ratcheting up. If I hadn’t prepared for this test for 2 weeks already, I would have thrown in the towel and taken steroids, acetaminophen and an antihistamine, but I had to shudder through it.

Yesterday was indescribable (but I’ll try). I woke up with my brain swollen, neck stiff and head shattered. It felt like that lumbar puncture headache: I had to be horizontal to function. And, of course, I was starving. The smell of the meat broth almost made me vomit. My arms shook as I force-fed myself an egg and turkey. Later, I ate beef stew meat and rice, but, again, not enough to fill me. I just couldn’t get it down. I spent the whole day in a weak ball on the couch. My husband had to half carry me to the loo because whenever I sat up, my limbs started shaking and I broke out in sweats. This was more than hunger on top of a migraine. I googled meningitis and encephalitis symptoms and actually considered going to the hospital. I’ve managed to stay out of the emergency room for the entirety of my illness, so I don’t consider it lightly. But, really, what could they do? IV fluids, which I can do at home; a spinal tap, which I’ll refuse; a brain CT, but I’ve had way too much radiation exposure in my life; an MRI, but I’ll refuse contrast; a blood test, which will be negative. So I stayed put. And, besides, I checked my blood sugar, blood pressure and temperature and, inexplicably, everything was stable. Actually, this made me a little more scared because I like having a reason for abnormal symptoms — something I can fix. The entire day, I kept saying to myself, “You’ve come this far, just 20 more hours… 15 more hours…” I couldn’t stomach anything after 6pm and I finally got to sleep at midnight, but woke up at 3:30am and 4am and then every hour, feeling sick and in and out of dreams about food. I got up at 7am and my head felt a bit better, but I was so emaciated and weak (I lost 3 pounds in those 2 days and I didn’t have 3 pounds to lose).

For the SIBO test, at least an hour after you wake up, you drink a lactulose solution and then take a sample of your breath every 20 minutes for 3 hours. Only 4 more hours. My kingdom for peanut butter on toast! It was torture. I was breathless and, with every movement, my heart rate skyrocketed. I’m not sure why I have to eat so much, so often, of so many foods in order to feel like my muscles and organs — even my cells — will function. It could be thyroid related: my metabolism is still revving too high. But then the icing on the cake … No, the cherry on top of the icing… The pièce de résistance of the whole month de hell: An hour after drinking the lactulose solution, my body responded how it always does to a shot of sugar without a meal chaser: my blood sugar crashed. No, no, no… We are in the 11th hour, I have been off supplements, I have gotten through the prep diet, please, body, do not fail me before I complete the test. I sat very still, tried not to expend energy, willed my pancreas and liver to do their jobs and release some glucose, but the shakes and my hammering heart… It was too much. I thought I might black out getting the phone to call my husband, my words were halting and stuttered, my vision tunneled as I tested my blood sugar. It was 57 and I was getting worse, I had no choice but to drink some apple juice. After only 3 ounces, I could feel my body stabilise. It was like those starving Naked & Afraid people who feel energy flood back into their bodies after eating a minnow (if you don’t watch that program, what are you waiting for?). I’d last about 3 hours on Naked & Afraid.

An hour and a half after the hypoglycemic crash, I got diarrhea. For someone who hasn’t moved her bowels in over 2 years without an enema, this is a big deal — body’s in trouble. I finished the SIBO test and wrote a note that I had to drink apple juice and all I can do is pray that they can glean something from my samples. As soon as I blew my last breath sample, I drank a huge mug of proper Irish tea with milk and ate a piece of banana bread. I moaned with every sip and bite. Potable, edible life. Then I ate a seed bar, some nuts, some melon. And then half an acorn squash and half a head of steamed cabbage. And an oatmeal raisin cookie. Now I’m sitting at the table for the first time in about 10 days feeling very grateful for no shakes, my normal-level pain, the food in my belly and the energy available to write this. I don’t even care that my churning, bloated, gassy bowel probably means I have SIBO and will have to take antibiotics. All I know is I will never do this test again.

Title Credit</a