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.

Halloween Update Litany

I’m going to try to write something. An update of sorts. Not necessarily because today is exactly nine years since this illness stepped into my body and started controlling the trajectory of my life, but more because it is a quiet Saturday and I can’t call any clinics and I don’t have any medical appointments. It’s Halloween, but we’re completely ignoring it this year. It’s a beautiful day, but I woke up after five hours sleep with bad brain symptoms, so I’m not up for going outside or calling a family member or washing my bed clothes, which are in dire need. And I’m just so tapped out on research right now. Endless, endless research into treatments and specialists and ways to bankrupt ourselves on nifty devices that might miraculously give a reprieve from symptoms or plateau my decline in functioning.

I often don’t write — even if I have the time and energy — because I feel like I want to express something meaningful and express it beautifully, or at least express it well. Express it in a way that others might identify with it or even be moved by it. Or, if not meaningful or moving, I’d like to be able to write something informative. But that takes more mental energy and creativity. I always find a reason not to tap into the emotions that are necessary to write deeply and thoughtfully. I stay sane with distraction, coasting along a wave of TV shows and dog cuddles, trying not to look into the depths below. I’m finding distraction harder this year.

After five years of a slow, but fairly steady increase in functioning, I’ve gone downhill. Not because my dog died or because wildfire smoke was choking us for weeks or because I can’t see my family and my one friend who kept me sane by visiting regularly. And not because of the emotional toll of the pandemic and the rage and heartbreak caused by the political strife in the world. That’s all just icing on the distress cake. The actual bulk of my cake is made of pain, exhaustion, reactions, and failing organs and bones, with thin, bitter layers of isolation and future worries between the tiers of sponge. It’s a really unpalatable cake.

When I first met my friend Jak over at Mast Cells & Collagen Behaving Badly, she had been through ME, then she was dealing with mast cell disease and her body had started to have problems from EDS (Ehlers-Danlos Syndrome, a connective tissue disorder). Most people I’ve met with this illness trifecta started having mast cell reactions after ME hit them. I was the other way around. I’d been dealing with angioedema since I was teenager and I first went into anaphylaxis in 2001. ME hit a decade later. When I met Jak, I didn’t have an EDS diagnosis and, when I first got it, I ignored it and decided it wasn’t true. I remembered, though, that Jak had said, “I could have told you that. With some of your symptoms, it seems obvious.” Her pain and subluxations didn’t start in earnest until she was in her 40s and dealing with peri-menapause, so she cautioned me that EDS could raise its head in the future. No, no, I’m not hypermobile, I said and I ignored it. Well, there’s no ignoring it now.

Last year, I went back to the top EDS doctor here in Seattle and told him I hadn’t believed his diagnosis and could we start from scratch, work me up again, see if he truly thought I had EDS? He smiled (good doctor), he agreed (did another physical exam), he reiterated that I had EDS and showed me what my body is not meant to do. He also diagnosed thoracic outlet syndrome (TOS). For all my research, there are so many odd things about my body that I barely notice. It’s like whack-a-mole — I’m just trying to push down whatever the most concerning thing is on any given day. What do I care if I can’t hang my clothes up or hold my phone to my face without losing circulation through my arms and having my hands go numb? It’s really not important in the grand scheme of this illness. You adapt. So when the doctor asked me if I felt anything as he manipulated my arm, I said, “Nothing. Except there’s no blood flowing and I have pins and needles.” He smiled gently again. “That’s not nothing. That’s what I’m looking for.” It took a very long time for blood to come back into my forearm and hand after whatever he did and I had electric zaps for hours. That was a year ago and I still haven’t read about TOS or whether those symptoms are normal or what to do about them. I don’t really care right now because I’m too busy trying to whack bigger, louder moles.

My leg pain has gotten much worse. I can’t stand in the kitchen to cook as long as I could before and, anytime I do, I have to wear compression stockings and a back brace, but still need to go to the couch and lie down with my feet up after a short while, groaning with the effort. My neck and back have gotten worse. Something in my thoracic spine keeps going out and my lower back and tailbone have a constant steady ache. My neck always feels unstable, so I move it very gingerly, but it also always feels like rebar, so I try not to immobilize it. I pull a different shoulder or neck muscle seemingly every day, usually from thrashing around in bed (unfortunately, not in a fun way, not when I’m conscious). I’m currently ignoring a jaw ache and maybe a cracked tooth from clamping in my sleep and the fact that my eyes never stop burning and are sore when I move them. My left patella keeps shifting out of place and it’s agony when it happens, so I’ve been doing a deep-dive into knee braces and kinesiology taping. I broke my wrist and finger this summer when Penny lunged at an off-leash dog and snapped my hand behind my mobility scooter seat. I’m still wearing a cast or a brace a full three months later and my right hand, which picked up the slack when I couldn’t use my left, has developed instability in the wrist and a subluxing thumb. When my endocrinologist heard about my fractures, she said we needed an appointment asap because she is very concerned that my osteoporosis has progressed. She’ll probably suggest I take more drugs. 🙄

And really none of this is that important because it all pales in comparison to my bowel hell. Bowhell.

Warning: lots of talk about poop and toilets ahead. Enemas barely work anymore. To have a bowel movement, I have to use a liter of water and massage my abdomen for sometimes hours each day. And “massage” sounds delicate. It’s not. I often worry I’m going to rupture something with my squeezing. With my broken wrist and finger, I couldn’t manage to press my abdomen properly for weeks and my bowels suffered. I couldn’t evacuate effectively, which meant I couldn’t eat enough and I didn’t sleep properly. Everything has a cascade effect.

Compounding my bathroom issues is how difficult it is to sit on a toilet. I lose circulation in my legs very quickly (even with a Squatty Potty) and it is incredibly painful on my neck and back. My doctor asked me when my neck was the most painful and I realised it is sitting on the toilet because I have no support for my spine and nothing to lean back on. I’ve resorted to using a hard neck brace (only sometimes — sometimes it makes it worse) and putting a chair in front of me to lean my forehead against, but, even so, after I’m done, I have to lie flat on the floor and, if I have the energy, use heat, traction and ice to help the spinal pain. I was never conscious of just how much I need to support my neck until two years ago when my mother was visiting and I’d made enough improvements energy-wise to go to the opera. Wow, three hours sitting in a short-backed chair was excruciating. I was almost in tears. I was dizzy, my heart rate was high, my legs were losing circulation (I’m short, so I was using my backpack as a foot stool) and I could not hold my head up.

So, sitting is an ordeal. And shitting is an ordeal.

I have a long history of vasovagal collapse from abdominal pain. In my twenties, it happened with the onset of my period because of severe dysmenorrhea. Shockingly, when I got sick, my cramps virtually disappeared. But they’re baaacck! And my period often likes to come three times in one month, so this cramping and inflammation, coupled with random pelvic floor spasms, coupled with colon pain has been a lot. Last June, I sat up in bed one morning and some deep part of my lower abdomen spasmed and I immediately went into a vasovagal episode. My heart rate went so low, that I was having trouble breathing. My blood pressure dropped, too, but the main problem was the bradycardia. I was shaking all over and trying not to black out, but after about 20 minutes, I had to call the paramedics. Before they even got here, the pain abruptly ended and, instantly, my heart rate came up and I could breathe again. (I told them not to come inside because of covid and I gave myself IV fluids at home. I’ve dealt with this before, emergency rooms really can’t help.)

From that day forward, every day for six weeks, I was in an acute bowel pain crisis. I couldn’t seem to eat anything that didn’t contribute to the pain across my transverse colon, I lost weight, I wept each evening, I slept poorly, my attention was never not on this organ that was constantly yelling at me that something was wrong. I wound up getting a CT scan (a big deal during covid and when I’ve had so much radiation in my life) and blood tests because I thought: what if this is life-threatening? I was spooked by a fellow EDSer’s emergency surgery for a ruptured bowel and resulting colostomy bag, but I was even more concerned about the possibility of an elemental liquid diet or a feeding tube. I’ve gone to great lengths to keep a varied diet, not only because food is my one joy besides dogs, but also because I know so many people who never got foods back after strict and prolonged eliminations. And feeding tubes — I never want tubes of any sort stuck in my body, too many complications. It’s the reason I’m still doing weekly peripheral IVs after five years, rather than getting a port or PICC (I don’t know anyone else who has come close to tapping veins for this length of time).

The CT scan showed nothing except my big lunch and tampon (a mortifying radiology report: unremarkable, TAMPON, unremarkable, unremarkable, COPIOUS AMOUNT OF INGESTED MATERIAL IN STOMACH, unremarkable etc…) and the acute bowel pain eventually faded back to my regular constant ache with periodic stabbing knives and electric zaps. But it sure got my attention.

I started Motegrity, a selective serotonin type 4 (5-HT4) receptor agonist, which cost $265 for one box (bought online from Canada because my insurance balked) and then caused possibly the worst medication reaction I’ve ever had. I started Linzess, which cost $350 for one bottle and either causes nothing to happen or a full day of sharts. I’m still taking Iberogast, Miralax, BPC-157, SBI Protect, Thorne SF722, oregano oil, berberine, magnesium, digestive enzymes, betaine HCl, and probiotics… all for my bowels. I’m about to try Mestinon, LDN and Cromolyn again (okay, I take it back, the latter was actually the worst medication reaction I’ve ever had — and I’m going to try it again, which has to show my level of desperation); these are all medications that can help motility. Plus, I have a Xifaxan prescription at the ready (which I’ve already taken twice) when I’ve exhausted all of these options.

It’s a next level problem. What I mean is, there were four years in the beginning of this chronic illness when I was “just” dealing with ME and MCAS — when I could still poop! When it was “just” muscle pain, but my joints were fine and my bones felt sturdy. Unbelievably, there were years when I didn’t have brain symptoms. I had the low-level kind of brain fog that made you forget things or not be able to find words, but, in the beginning, I didn’t have the buzzing brain and eye pressure, slurring and screaming tinnitus that makes bed the only possibility, even if my body is feeling strong. These new additions take illness management to the next level.

I’m on my third gastrointestinal doctor. The first said: Miralax, papaya, probiotics. Huh? Did you even hear the part about dead colon? On a return visit, she said: Daily enemas for life. Are you fucking joking? I asked her when she would recommend a colonoscopy (back before I realised it would need anesthesia in my case). When you have bloody diarrhea, she said. Right. Okay.

The second GI doctor said: Colonoscopy and endoscopy. On a return visit, she said: COLONOSCOPY AND ENDOSCOPY. She would not talk about any other tests or interventions. I don’t want to go through that. I don’t think those procedures will show anything and, with my medication reactions, there are legitimate risks to full anesthesia, not to mention the clean out having risks because of my hypotension and hypoglycemia. I thought (and still think) that it was prudent to exhaust less invasive options first.

These two doctors were young women at the University of Washington, one touted as The Motility Expert and the other as being EDS-knowledgeable. I mention this because I would assume I would be most comfortable or have the best experience with them instead of the third GI doctor, who is an old man that made a slightly misogynist comment right out of the gates and doesn’t make much eye contact. But he has been the only one to think outside the box and marginally help me. He ran tests that nobody has ever run since I’ve been sick (I’d never had a stool sample done or celiac test!) and spent 40 minutes discussing my mast cell history before even broaching the subject of my bowels. He dismissed a colonoscopy and it felt like he’d lifted a 100-pound weight from my shoulders because I was crippled with guilt after rescheduling the procedures over and over for a year and a half.

So, because of the progression of bowhell symptoms and structural issues the last few years, I have been pursuing MRIs and neurosurgical consultations. A cine CSF (cerebral spinal fluid) flow study showed a lack of CSF in my hind brain, caused by low-lying cerebellar tonsils (LLCT). My neurosurgeon (who is experienced in dealing with EDS/MCAS/ME patients) also suspected craniocervical instability (CCI), but couldn’t recommend surgery from my MRI measurements and symptoms without first performing more tests (invasive cervical traction (ICT), where they lift up your skull with a pulley system to see if there is an improvement in symptoms, and intracranial pressure monitoring (ICP ), which is a bolt in the skull that holds a probe that measures pressure in your head while concurrently preforming a lumbar puncture). I decided not to do either of those because, as you might have guessed, I don’t like rocking the boat (with, say, a new soap, let alone invasive tests that involve holes in my skull) (oh, and travel across the country) (and covid). But I have wondered if the blocked CSF flow is contributing to or entirely causing my brain symptoms. That’s a big deal. I used to feel smart and effective.

But the biggest deal of all came from the neurosurgeon looking at my pelvic MRI defecography from five years ago (which I didn’t even send to him because I was only consulting him about my neck; he must have gotten it from my specialist, who was the referring physician).

“You have a large bowel,” he said.

“I’m not surprised.”

“And what have you been told about your enormous bladder?”

“My what?” He has a thick Italian accent straight out of central casting and I didn’t know there was anything abnormal about my bladder.

“Your enormous bladder. Your ENORMOUS BLADDER!”

He had to repeat it four times before I could understand what he was saying. It was pretty comical. Nobody had ever mentioned my bladder. He recommended a renal ultrasound to rule out hydronephrosis, urodynamic testing for neurogenic bladder, and a lumbar MRI to look for tethered cord. I’m sure you’ll be shocked to know, I ignored it all… until I watched online presentations by Petra Klinge, probably the top tethered cord specialist in the country, and a Q&A with Dr. Klinge and Jeffrey Greenfield where they mentioned that, although bladder symptoms are the hallmark of pediatric tethered cord, in adults it’s often bowel problems, usually constipation. Ah.

I sent my lumbar MRI (both prone and supine) to my neurosurgeon and he diagnosed “tethered cord, classic variant,” which is notoriously hard to see. In other words, as my complex disease specialist emphasized to me repeatedly, it is rare for this neurosurgeon to diagnose tethered cord before CCI from a lumbar MRI. This is the case even though they have both actively been trying to identify it early since so many of their patients have to return for a second “detethering” surgery after undergoing craniocervical fusion.

“Elizabeth, why aren’t you on a plane to New York for SFT [sectioning of the filum terminale]?” my specialist asked me.

Friends, I DON’T WANT SURGERY. EVER. No surgery, but ESPECIALLY NOT SPINAL SURGERY.

I will leave you there. We have much to discuss. This is now my focus. I need to do everything I can to manage these symptoms and to halt their progression. Meds, exercises, physical therapy, prolotherapy, I don’t know what. Right now, my plan is to plan. I’m not willing to see any healthcare practitioners in person, so it’s tricky, but it’ll be a winter of research and putting some ducks in a row.

I also have to start preparing for a what might be an inevitable surgical eventuality. I need a pain management protocol with bigger guns than paracetamol, I need to strengthen my core and my bones, I need to find muscle relaxants to which I don’t react, I need to get my blood pressure up and control my MCAS as much as possible. I need to save money. No more ignoring.

Happy Samhain, everyone. And my 9th “sickiversary” — not a happy day, but one that should be acknowledged, nonetheless.

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!

Best Endocrinologist Ever.

Every time I have an appointment with my endocrinologist, I hem and haw about whether I should cancel it. It’s on the other side of town, $50 round-trip in an Uber, it only ever lasts about 20 minutes and couldn’t she just look at my thyroid lab results and email me about whether to stick with my current hormone dosages? Well, each time I go, I am so grateful for this doctor (last week I told her nurse I would walk on hot coals for Dr. B) and I vow to come straight home and write an update so I can remember everything she said. I never have managed to do this and the visit summaries hardly mention anything at all, so today I’m going to write a general update of her treatment.

I’ve seen a lot of endocrinologists in the last six years and they have all, without exception, been kind of odd, stoic and monosyllabic. Until Dr. B. She’s vibrant and engaged (after seeing her, I always mourn my lack of brain energy a little more), listens closely, talks about her ideas out loud, thinks outside of the box and is interested in conditions not typically related to the endocrine system. Imagine that: a big hospital allopathic endocrinologist taking the whole body into account!

The first time I saw her a year ago, I told her my basic story (anaphylaxis 2001-2002, vasovagal collapse 2005-2011, thyroid goiters 2009, radioiodine ablation 2010, SICK 2011), assuming she’d check my thyroid and update my prescription as per usual — and she did, but she also ordered pituitary blood tests, a Cortrosyn stimulation test (CST) (otherwise known as an ACTH stimulation test — it measures how well the adrenal glands respond to ACTH), referred me to two neurologists — one that specialises in headaches and one that specialises in dysautonomia — and said we would consider placing a continuous glucose monitoring device to assess the drops in my blood sugar (good news is, my blood sugar crashes got much better, possibly because I am eating all foods again and have put on weight). No other endocrinologist had ever suggested any of these things.

I was dreading the CST because of my reactivity and intravenous injections of anything don’t allow me to start low and slow, but it was fine. I did my research beforehand (yes, they were they only using 1mcg of Cortrosyn; no, I didn’t need to fast; no, it didn’t need to be timed according to the follicular phase of my menstrual cycle; no, I didn’t need to be off bioidentical hormones; and, yes, my husband could be with me), so I felt comfortable about the procedure and the results were normal.

The pituitary testing showed low LH (luteinizing hormone), DHEA and IGF-1. Because of the latter, at our next appointment Dr. B ordered a pituitary MRI to “leave no stone unturned” (LOVE her). The MRI was normal, but she emphasised that it was less reliable because of my unwillingness to use contrast (I didn’t think the risks of a reaction outweighed the benefits of a better MRI — and she was ok with that). She also gave me a prescription for Florinef to see if it would help with my hypotension (blood pressure was 80/60 at this appointment). I trialed it for a month (starting at 0.0125mg (!!), working up to 0.1mg) and thought it might be increasing my headaches (but not my blood pressure, of course), so I stopped, but it’s still on my list to retry.

My thyroid levels have consistently been tanked for the last 6 years and at every appointment Dr. B would tweak my meds. I’ve gone from 50mcg/day of levothyroxine to 100 to 125 and from 5mcg/liothyronine to 10 and — this is exciting — when I told her my naturopath suggested much higher T3 and lower T4, Dr. B said, “I’m totally open to that, let’s try it.” 😮 Typically allopathic endocrinologists and NDs do not see eye to eye on treatment and optimal thyroid levels and often one doctor will be resistant to another doctor’s suggestions, especially when the suggestion comes from someone who isn’t a specialist. Dr. B has no ego getting in the way. So, we increased my T3 to 15mcg twice/day and lowered T4 to 100mcg. I really don’t know if it has helped, but she seems more satisfied with my thyroid levels. She told me to watch out for tremors, heart palpitations and insomnia, but they are all within my normal constellation of symptoms, so who knows (although, as I’m typing this, I realise that my quite-vicious nightly palpitations haven’t happened in a while– maybe weeks). She diagnosed me with “euthyroid sick syndrome” which essentially means your thyroid will stay sick until the underlying chronic illness gets better.

I saw a headache neurologist and a dysautonomia specialist (more on both of those in separate posts), but neither of them were the ones to which Dr. B referred me. And — another reason to love her — she had no problem with that and was still interested in what they had to say. Even better, when I told her the dysautonomia specialist didn’t have much to offer and essentially told me just to make sure I don’t decondition any further, Dr. B raised her eyebrows in surprise and kind of dismissed this, still interested in helping me fix this piece of the puzzle (those of you that haven’t done the doctor rounds might not realise that almost all of them tell you to simply exercise more (or gain/lose weight) (or take antidepressants), so I expected Dr. B to take the specialist’s assessment as bible and agree that I was just deconditioned). She suggested I do a growth hormone challenge (it involves a 17-hour fast, an 8am check-in and a 5-hour test where they give intravenous glucagon and then measure human growth hormone (HGH) response through blood draws) and said the worst side effect she’d seen was vomiting. I wanted to vomit at the thought of getting to a hospital at 8 in the morning. I went home to do some research; that was in July of last year.

When I saw her again at the end of September, I hadn’t done the HGH challenge and she didn’t give me a hard time at all. Three months after that appointment I still hadn’t found the nerve, so I emailed her a long message about my glucagon fears (those of you with mast cell/anaphylaxis/medication sensitivity issues can read my email* below for the reasons it gave me pause) which any other specialist would either not answer or reply that I should come in for an appointment to discuss. Instead, she sent me a very thoughtful, validating reply (not “For fuck sake, stop being such a scaredy-cat and do the bloody test since I’m the one doctor who is investigating all these things!”) and offered an alternative to glucagon — an insulin challenge test — which I agreed to … and then never did. They give you intravenous insulin, drop your blood sugar to 40 and then test HGH. I told her I was more comfortable with the devil I knew (hypoglycemia) then the one I didn’t. But, it turns out I’m not really comfortable with voluntarily meeting any devil. I’ve had my blood sugar drop into the 40s. It was absolutely horrific — one of the worst feelings I’ve ever felt. And, although they give you intravenous glucose right afterwards, I still couldn’t bring myself to do this test and subject myself to the crash when I thought they probably wouldn’t find anything.

So, I waited until my appointment this month — 8 months after she first wanted to investigate this avenue — and told her of my fears about the insulin challenge test as well. I expected her to just give up, to say there’s probably nothing wrong there, anyway, but she didn’t. She said there was an additional reason to do the insulin challenge (other than for HGH output) and that was that it can pick up a hypothalamus issue that the glucagon stimulation test can’t. Ok, I can get on board since it’s a two-fer. However, in another display of out-of-the-box-ness and medical generosity, she suggested I just try HGH injections without doing the challenge test. She said she had two other patients with the dyautonomia-mast cell-EDS trifecta (more on my EDS diagnosis at another time) and, even though neither one flunked the stimulation test, they tried HGH and had really good results. A friend of my sister-in-law’s had a lot of success with HGH and it has always been in the back of my head as something to try when I win the lotto. I read it cost thousands of dollars, but Dr. B’s prescription is “only” $138/month, so I’m on board. If/when I get the nerve, I can stop the HGH for a week and do the challenge test and, if I fail, insurance will pay for my prescription. An added bonus is my nurse who comes to my home every week (to give me intravenous fluids with my immunoglobulin infusions) can show me how to subcutaneously inject the HGH and I don’t need to go across town for a tutorial appointment.

Gratitude for good doctors! Wish me luck with the HGH.

Buffers can help, but sometimes not enough…

My brain MRI was fine. No evidence of MS, no sign of something causing my headaches. My c-spine MRI showed that I have mild intervertebral disk space narrowing and mild central disc osteophyte complex, centered at C4. I won’t go into the history of my neck problems, but if this is “mild” I feel very, very sorry for anyone with moderate or severe problems. When my neck has “gone out”, the pain is 10 out of 10. It is like nothing I’ve felt before. Can’t lie down, sit down, move arms, head, back… I’ve showed up at the doctor’s office twice at 7:30am, without an appointment, crying and begging for help. Both times they gave me injections in my butt that knocked me out for almost two days. I guess, if the bone problem is mild, the muscle problem can still be severe. My physical therapist said I had the worst case of hypermobility in my neck that she had ever encountered. It must have been from all my head banging, rock ‘n’ roll days and all the extreme sports I played. That’s sarcasm. I didn’t do anything!

My neck first went out a week after a particularly bone-rattling roller coaster called The Iron Wolf. It was a stand-up roller coaster and they had head buffers on both sides to minimize injury as you were being tossed around. I was too short for them to buff properly, though, and my head and neck took a battering. My brain felt blended. One week later, I tried to get out of bed and couldn’t. The neck pain was excruciating, radiating down my limbs. I was so unfamiliar with bone/muscle pain, that I thought I was going to be paralyzed. I thought my spine was fractured or something. I lay there for hours with tears running into my ears, waiting for my husband to get home. That one healed on its own since I had no health insurance at the time, but I’ve had problems ever since. I guess I did go into the history of my neck problems, after all!

Anyway, back to the present: I added back in rice to my diet with no adverse effects. Unless this exhaustion and pain are caused by the rice?? Haha. Just kidding. I’ve added flax to my smoothies and started taking the zinc and ferrous gluconate supplements. The latter is meant to be taken 1 hour after food and 2 hours before food and, let me tell you, it is VERY HARD for me not to eat for 3 hours, so I’m cheating a bit on that one.

I stopped taking the birth control pill yesterday. My headache is all day, every day and is crippling me. I’ve spent a lot of time lying down in dark rooms in the last 3 weeks, my face is permanently pinched, I can’t deal with too much light or noise. I am constantly alternating epsom salt baths, ice packs, arnica, IcyHot spray, TENS unit, meditation, breathing exercises, anything I can think of to ease up my neck and back muscles and hopefully help the headache. After much research on my headache support group forum, I’ve convinced myself that it is caused by the pill, so I am going go stop taking it for a month and see what happens. I also want to quit the pill because I’m extremely sedentary and that contributes to the risk of blood clots (and being over 35 years of age). I actually think I would prefer any other pain to this headache (except for maybe the aforementioned 10-out-of-10 neck pain… and, when my period hits, I’m sure I’ll amend that statement).

I woke up full of gratitude this morning. There are people out there dealing with this and other illnesses with little to no support, starting their journey with so much less than I have. My heart breaks for them. Without my income, I am terrified of losing our house, our savings, our health insurance, but I could have started this illness with no house, no savings and no health insurance. What do people do? I am blessed and grateful to have a slight buffer. Like The Iron Wolf’s buffers, it may not be enough to save me down the road, but, for now, I can ride the roller coaster.