Tag Archives: myalgic encephalomyelitis

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In Amber

A DECADE

A decade since I felt well.

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

A decade since my last cold, flu or bronchitis.

A decade since my last vaccination.

A decade since I enjoyed Halloween, my favourite holiday.

A decade since I was in a lake or ocean.

A decade since I was on a train.

A decade since I stood up at a concert.

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

A decade since I went to a wedding.

A decade since I went to a barbecue.

A decade since seeing so many friends.

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

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

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

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

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

INFECTIONS

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

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

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

VACCINES

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

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

COVID

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

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

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

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

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

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

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what is and what should never be

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

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

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

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

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

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

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

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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.

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End of Year On a High.

I have to memorialise what happened yesterday because I am astounded and grateful and I bitch so much about the healthcare in this country making so many of us go broke, but this was truly amazing.

On Monday, December 30th, for the hell of it (and prompted by something my friend, Rachel, posted), I decided to ask my brand new doctor (who doesn’t even know me; I was just dumped on her plate when my phenomenal primary care provider left the clinic) if there was any chance we could squeeze in an MRI before the end of the year because I had met my insurance’s out-of-pocket maximum expenditure for 2019 (meaning, in theory, I wouldn’t have to pay for anything else — and wouldn’t it be nice to get the MRI that one of my specialists requested for free?).

Astonishingly, she answered me the same day and said she had put in the order for the MRI, but she doubted it could happen because it needs a prior authorisation (PA) from insurance and that usually takes 8 days or more. I never expected her to read the message during this very busy time of the year, let alone answer it, let alone put in an order without seeing me in person. I was shocked — she trusted what I said in my email! Maybe I should stay with this doctor, after all.

So, yesterday, the LAST DAY OF THE YEAR, at 7:30am, I call my insurance to ask how long it would take to get the PA. They say to call another company, AIM.

I call AIM and they say the PA can only be expedited if the order is marked urgent and mine isn’t (and it definitely doesn’t warrant an urgent request, so I’m not going to pursue that). But they tell me there is a way to get it approved immediately — if the doctor calls them and answers questions over the phone.

I email my doctor to tell her this, making it clear that I understand she probably won’t see the email and wouldn’t have time to call AIM, regardless.

Then I call radiology to see if I can grab a same day appointment, just in case. Radiology Ryan tells me they have one opening left, but I can’t have it unless they have a PA in place.

Then my doctor’s medical assistant emails to say she can’t get a PA without my having an MRI appointment. Well, that’s a catch 22. And she needs a CPT code.

Meanwhile, throughout all of this, I am going to two big doctor appointments — end of year endocrinology and a 2-hour allergy testing for anesthetic agents — sending emails and making calls in between talking to doctors.

As soon as I’m back in the car, around 11:30am, I call Radiology Ryan and tell him my conundrum — that I need an appointment to get a PA. He says their rule only excludes same day appointments, so I can make one for the future just to secure the PA and, if it comes through, call back to reschedule for today. If the spot is still available. Ryan gives me a random January appointment, but tells me the doctor should provide the CPT code. Then, hearing my whimpering, he takes pity and looks up the code for a “lumbar MRI without contrast.”

I email the MA, tell her the code and my appointment date, and cross my fingers.

Soon after I get home, there’s a message from the MA saying she called AIM and got the PA. It’s a miracle!

I call Radiology Ryan. It’s now 1:30pm. He looks for the PA in his system, sees everything is in place, and tells me there’s still a 1:45pm MRI opening. And it’s on a 3T machine, which is what I need. Another miracle!

I shove some food in my face and dash over to the third hospital of the day, which is only 5 minutes away.

The woman behind the desk tells me I have beautiful eyes and my day just couldn’t get much better.

I fall asleep in the MRI (even a few minutes can help!) and then walk over to the medical records office and get copies of my imaging within 15 minutes.

All in all, it was 26.5 hours between my doctor’s MRI order and having my imaging discs in hand.

Mind blown. All of the people who contributed to getting this done deserve wine and chocolates, including the eye flatterer.

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Also, after being completely debilitated by head, neck and eye pain for three days, yesterday it completely eased up.

Also, it was a beautiful 7:40am drive downtown, a time that I’m rarely out of bed.

 

Also, my thyroid levels are dialed in.

Also, all of the skin prick and intradermal tests for medications were negative.

Also, I walked around the hospital by myself for the first time since I used to volunteer there 12 years ago. My husband usually pushes me in a wheelchair.

Also, we stopped briefly at a grocery store and I walked around like no big deal.

Also, the grocery store had tons of good salads in the deli, so I didn’t have to cook.

Also, I succeeded again in inserting my peripheral IV in a hard-to-access forearm vein and it is so much better to be able to move normally throughout the day without worrying about kinking something in the elbow or wrist.

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Also, although Penn kept me up most of the night with her fireworks panic, Riley has decided that he’s too old to give a shit and one terrified dog is definitely easier to deal with than two.

Also, I had the best Christmas health-wise since before I was sick. <– This last point is so exciting, it will get its own blog post.

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Happy new year, everyone!

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UPDATED Emergency and Surgery Protocol for MCAS and ME

The links at the bottom of this page are for my protocols that were updated March 29th, 2020. My protocols are for me and my doctors. I am not a health professional and I recommend you do not use any of my advice or guidelines without consulting your doctor. *See full disclaimer below.* My protocol is an accumulation of months of research into precautions that should be considered by people with mast cell disorders (MCAD) and myalgic encephalomyelitis (ME/cfs), as well as some guidelines for patients with Ehlers-Danlos syndrome (EDS) and craniocervical instability (CCI). It includes information and materials from ME websites, such as me-pedia.org, mast cell resources, such as tmsforacure.org, my doctors and specialist, as well as other patients.

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I started writing an emergency protocol back in 2015 when my mast cell reactions were scaring me with their unpredictability. I wanted something comprehensive, in writing, for anesthesia teams in the case of a planned surgery, but also something that my husband could hand to paramedics or emergency room doctors, if I couldn’t speak for myself. It was a massive undertaking because I tracked down every link and reference I could find about medication and surgery precautions for patients with mast cell diseases and ME. I wanted to gather all the information that was pertinent to me — my particular case — and edit it down to something manageable. I put together something passable and then moved it to the back burner for the last 4 years.

Last week I saw a new GI doctor who was emphatic that I get a colonoscopy and endoscopy at the same time and with anesthesia. I have been completely enema-dependent for years and, honestly, it’s exhausting. My previous GI doctor told me it was due to anatomical abnormalities (an MRI found pelvic floor dysfunction with cystocele, rectocele, sigmoidocele) and that I’d likely need enemas for the rest of my life, but it feels like the issues are getting worse and the new doctor didn’t want to throw medications at the problem without knowing exactly what she’s dealing with.

I cannot imagine voluntarily going under anesthesia. All of my worst reactions in the past 7 years have been to medications and my fear of trying new ones — especially intravenous medications — is so pronounced that I vowed only to agree to anesthesia if I was in a life-threatening situation (or couldn’t speak for myself). How could I be lying on a gurney with a peripheral IV, knowing they are about to inject multiple anesthetic drugs and not jump up and run out of the room? I wouldn’t be able to advocate for myself… I could die for a colonoscopy! So, I left the appointment with a sense of doom that only deepened when I started to feel a new ache in my lower abdomen. It got progressively worse over 3 days, the ache turned to pain and, what I thought of as run-of-the-mill bowel inflammation started to seem like something else. Gallstones? Bladder infection? I got out my emergency protocol notes and spent about 20 hours over the next few days rewriting everything, feeling like I might be working against the clock if this was something like appendicitis. Then I woke up last Sunday to such severe lower abdominal pain that I couldn’t move, could barely breathe or speak. I was shaking all over, in a cold sweat, nauseous and felt like I was on the brink of passing out. My husband wanted to call an ambulance, but I said no, hoping it was some sort of spasm that would pass. And it did… but not entirely. The ache and twinging remained for a few more days. It’s gone now and I think it was my dastardly bowels, after all, but it was bad and it scared me. It’s like the gods heard me say, “no way am I getting a colonoscopy” and decided to stab and twist their Elizabeth voodoo doll to make sure I got the point that there’s a problem I can’t continue to ignore.

The upshot of all this is, I finished the emergency protocol and I wanted to share it here, in case it could be useful to anyone else. There are a few important points about it, though:

  1. When I started, it was for personal use and I didn’t keep track of references. I will go back and gather all the links and add them to this article, but I have no idea how long it will take me and I wanted to share this sooner, rather than later. If you see your own information here without credit, please understand I will add a link to your article/blog/website! Please feel free to leave a comment.
  2. This protocol concentrates heavily on mast cell precautions because MCAS has caused my life-threatening reactions such as anaphylaxis and profound hypotension. It does not mention ME or CFS, although I researched and included ME resources, such as Dr. Lapp’s recommendations (Appendix E of the Primer for Clinical Practicioners) and Dr. Cheney’s anesthesia letter.
  3. I have an EDS diagnosis (Ehlers-Danlos Syndrome — a connective tissue disorder), which can cause serious surgical complications. There are a lot of guidelines out there for EDS patients and I have only researched some of them. It wasn’t until recently that I started to take this diagnosis more seriously and I still haven’t had the gumption to jump deeply down the research rabbit hole, but, once I do, I will be updating my surgery protocol with any additional EDS precautions that are pertinent to my situation.
  4. It bears repeating: This is not medical advice of any kind. This is my personal protocol, for my personal situation. You may be more or less reactive than I am, you may have normal or high blood pressure or you may be far more disabled and need many more accommodations… But, I hope it can be of use as a jumping-off point. Please consult with your doctor.
  5. The links below are printable pdf files, which are formatted properly, but if you need any of them in a different format so that you can copy and paste certain parts into your own protocol, don’t hesitate to leave a comment or email me at akaemilo@gmail.com, and I will send you a Word doc or Google doc version.

 

Click here for the long version of the protocol, geared towards the patient: Elizabeth Milo Full-Length Emergency and Surgery Protocol

Click here for 1.5-page short version of the protocol, geared towards doctors: Elizabeth Milo Abbreviated Emergency and Surgery Protocol

Click here for anaphylaxis protocol: Elizabeth Milo MEDICAL EMERGENCY RESPONSE PLAN for Mast Cell Activation and Anaphylaxis

Click here for my personal medication chart, based on an original from The Mastocytosis Society: Elizabeth Milo Safe Medication Guidelines

 

Here is The Mastocytosis Society Emergency Room Protocol.

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*HEALTH DISCLAIMER*

This blog is my own personal journey. The information and other content provided in this blog, or in any linked materials should not be construed as medical advice, nor are they intended to replace a one-on-one relationship with a qualified health care professional. NO information on this site should be used to diagnose, treat, prevent or cure any disease or condition.

If you or any other person has a medical concern, you should consult with your health care provider or seek other professional medical treatment. Never disregard professional medical advice or delay in seeking it because of something you have read on this blog or in any linked materials. If you think you may have a medical emergency, call your doctor or emergency services immediately.