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!

So this is Christmas…

It’s Christmas Day. I was looking back at my blog archives and saw that in December, 2012 I wrote 13 entries. December, 2013 there are 3 and December, 2014 there are 6. This is actually indicative of how I was doing these years.

In 2012, I had recently become housebound, every evening at around 5pm, my whole body started to hurt in earnest and my headaches were blinding, but I still had (most of) my mental faculties and no neuro symptoms anything like what I experience now.

In December 2013, I was so sick… I was in so much pain, isolated on the floor of my bedroom, hour after hour, and feeling suicidal.

Last year, I was in a reactionary whirlwind. Christmas eve, my tongue swelled up and that night was truly one of the worst I’ve experienced.

This year, though… so far… things are better (she says tentatively, knocking on wood). This is only my third post this month, but it’s more to do with my brain not working very well than with being bedbound with sickness. I feel so much more stable this year. I haven’t had one of my bad nocturnal reactions in eight months, I think. I’m handling my immunoglobulin infusions well. I can eat virtually anything. I crash regularly and feel horrific, but bounce back quicker.

Tuesday, Wednesday and yesterday were good days. God, I love being able to say that. I had three good days. My sister, her boyfriend and their dog arrived yesterday and, because I’m such a nightowl these days, I was able to function from 2pm until 2am, retiring to my bedroom a few times to rest. I had no headache! Let me say that again: I HAD NO HEADACHE! Lights and noise weren’t bothering me. I was tired, but no cognitive symptoms. It was a Christmas miracle. This morning I feel hungover, my head aches, my eyes are sore and I’m very tired and dragging. But it’s still early (1pm 😉) and I have faith that this evening I will be okay. I had one wish for this Christmas: no pain and no fear –and I think, besides dull aches and low-level silent pleading, that wish is coming true.

Gratitude is shooting out of my fingers and toes and the ends of my hair like I swallowed George Bailey’s moon.

Update: I forgot to publish this yesterday. It’s now almost midnight on the night of the 26th. This week came down on me like a pile of bricks today. I had a hypoglycemic episode, hit a wall, felt very nauseous, was having trouble talking, went to bed weak, trembling, shaking with chills. BUT– here I am six hours later and, besides being drained, I’m doing okay, able to finish watching It’s a Wonderful Life with my husband, crying at the end like we do every year.

All in all, this Christmas was a success. Great company, great food, great gifts, great-full. In fact, without a doubt, this Christmas was the best I’ve had health-wise since 2010.

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Mast Cell Madness.

I’m officially terrified by my mast cells because Christmas heralded another sick, sick few days. Almost as sick as Thanksgiving, so I’d have to say the 2nd sickest night of my life. However, this time, it all started with my tongue swelling up, which gave me more insight into the mechanism behind it.

I sometimes wonder if all my health issues stem from mast cell activation syndrome. I can tell the difference between ME symptoms and mast cell reactions, but, still, there’s this little seed in my brain that says, what if they’re at the root of EVERYTHING and I should be spending my time finding a doctor with MCAD expertise on this side of the country (it doesn’t seem to exist in Seattle)? I don’t do this because I am generally stable. On a day-to-day basis, I’m not having reactions — unless, of course, many of my chronic symptoms have mast cell degranulation at their core and I just don’t realise it.

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My health issues started with full-blown anaphylaxis, out of the blue, 9 days after my 28th birthday. Doctors were hopeless and gave no advice back then, not even daily preventative antihistamines. The common denominator was alcohol (but not every time I drank, so it was confusing), so, after the last trip to the emergency room in Dublin, where I almost died, I finally quit drinking and haven’t touched a drop in 13 years.

Before that, I had swelling in my eyes and hands and a severe edema episode once or twice that I didn’t really think much about. I linked it to Asian food, so stopped eating that and MSG and didn’t look any further into it. This was eventually diagnosed as autoimmune urticaria and angioedema and I was told to take Zyrtec, but didn’t want to medicate daily for an intermittent condition.

I’ve always had trouble with my periods — crippling dysmenorrhea — but they got progressively worse until I collapsed with syncope and shock 13 days after my 32nd birthday and was taken off in the ambulance. For 6 years, no doctor gave me any advice until, finally, an OBGYN told me to dump salt on my tongue. This doesn’t stop the collapses, but it certainly helps. These episodes continue to happen randomly to this day, always on the first day of my period and are, without a doubt, mast cell mediated, presumably low-grade anaphylaxis (very low blood pressure and pulse, bowel problems, syncope, shortness of breath).

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I have a spot in my throat that has itched for years. It was actually the thing that lead to diagnosis of my toxic thyroid goiters and Grave’s Disease because I mentioned the itch to some random doctor who palpated my throat. I’ve now realised it signals reactivity in my body at a very low level. It’s almost always there, but, when it’s not or when it’s very bad, I pay attention.

I was flushing badly for years, thinking I had developed bizarre self-consciousness, but the self-consciousness was actually a result from flushing and having people point it out! When I was diagnosed with Grave’s, I thought it was a symptom of that, but it never went away after ablation.

Of course, in retrospect, there have always been issues I have dealt with, which may or may not originate with mast cells: thyroid problems and Raynaud’s can be a result of mast cell disorders. Also, constipation, headaches, low blood pressure, and temperature sensitivity (all of which got much worse in recent years). Finally, many of my ME symptoms could also be from MCAS: fatigue, joint and tissue pain, eye pain, vision problems, vertigo, episodes of low body temperature, scent/odour/chemical sensitivity, sinus problems, cognitive impairment, hair loss, decreased bone density (I have osteopenia, on the cusp of osteoporosis), shortness of breath, medication reactions, malabsorption, and tinnitus. See a list of signs and symptoms here.

It would be wonderful to be able to manage and control any of these issues, but none of them scares me like the nights I’ve had recently, not even full-blown anaphylaxis. I’ve tried so hard to figure out my triggers, but they are moving targets. Tongue swelling and angioedema are obvious, as is the very specific breathing difficulty you get with anaphylaxis (it is nothing like asthma or wheezing from an infection). I don’t get daily hives and itching like many people. My reactions now are all about the histamine bucket and completely dependent on where I am in my cycle and what is happening in my life. I may be able to eat anything one week and then suspect that those same foods are giving me sinus trouble, insomnia and a jaw ache a different week. My chronic daily headaches, tinnitus, brain fog and exhaustion could be from food choices, but I’ve never been able to pin down any causation. My diet is very low-histamine compared to normal people and how it used to be, but I still allow myself chocolate, coconut, store-bought chips, beef, almost all fruit, including dried and many things that others avoid. Could these things be contributing to my problems? Yes, but, without a definite correlation, I don’t want to eliminate foods. Once you’ve experienced anaphylaxis, “reactions” like a runny nose, constipation or aching hands are quite ignorable. The only thing that consistently caused a reaction was alcohol and my periods. And, now I can say with certainty, holidays and events, no matter how careful I am.

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I prepared for Christmas over the course of a month and a half, slowly bought presents and wrapped them, slowly wrote some Christmas cards, slowly got the spare room ready for my sister, slowly did laundry — over the course of weeks! Didn’t overexert myself at all. There was no excitement, no activities. My sister and her small dog came over, we watched tv and opened presents. I had rested multiple times throughout the day and the only not normal thing I ate was half a tiny piece of fresh King salmon, which had been brought in off the docks that same morning and, I was told, caught the day before.

My tongue started to swell up after dinner. By the late evening, I had gotten upset for really no good reason (which has historically happened with my mast cell reactions) and was flushing. I had a bad reaction to about 15mg of Benadryl a week or two prior, so I was scared to take a decent dose on this night. I bit a dye-free capsule and put a drop on my swollen tongue and went to bed. At 2am, I awoke with the same evil that I experienced on Thanksgiving and the night after starting Cromolyn (before going to the AirBnb rentals back in September — it was a few days before my period that time, too). I was shaking so badly, I couldn’t lift the water glass, I was drenched in sweat and had weird runaway chills coursing through my body. I crawled on my hands and knees to the bathroom, which scared the shit out of me because, through all the worst of ME, that’s only happened once before. I fell into harrowing nightmares and woke up gasping for breath over and over, feeling poisoned and infected. I dreamt that I was sick and dying and my husband wasn’t paying attention or taking it seriously. I dreamt that I was sick and dying and my mother laughed at me (this isn’t remotely based in truth, this is my terrified mind not knowing how or where to get help). I dreamt that my dog’s neck was broken and I was carrying him to get help, but I was sick and dying and couldn’t do it. And, finally, I dreamt that I was lying on the floor begging my husband over and over: “Please kill me. Please kill me. Please kill me.” I woke up sobbing and so wrung out.

That morning, my period came 5 days early. You better believe, if I had known my period was going to arrive Christmas Day, I might have cancelled Christmas. Or at least postponed present opening for a day. And definitely not eaten even the freshest salmon.

In the past, my anaphylaxis episodes went like this:
My friend A’s birthday party.
My friend C’s birthday party.
Oktoberfest.
Easter party.
C used to joke that I was allergic to fun. I can’t believe he was right. I collapsed and had the paramedics called twice while my mother was staying with us and, also, when my best friend was here from Ireland — both were “events”. I started to get paranoid that, psychologically, I was somehow causing my system to crash when there were visitors. But, every single one of these times, I had my period. There were only a few anaphylactic episodes that I can remember when it wasn’t the first day of my menstrual cycle. EVENT + MENSTRUATION = MAST CELL MELTDOWN. But I think I only really and truly started to believe this 100% on Christmas.

So, Christmas day is a total haze. I crawled downstairs a few times to eat and try to put on a good face, but I don’t remember much and dozed most of the day. Like Thanksgiving and September, however, I bounced back quicker than I could have ever anticipated. That night I kept marveling, “How am I speaking? How am I sitting up? How am I alive?” When it’s bad, you honestly want to die. When it ebbs, the human spirit kicks back in shockingly quickly and you just get on with it, until the next time when you are surprised anew at just how bad the bad is. I didn’t even really modify my diet. I continued to eat my almond butter, coconut ice cream and drink bone broth and tea (all high-ish histamine). If anything, I felt more, Oh fuck it, how much worse could it be? At this stage, I’m much more scared of menstruation and engaging in any sort of event — even one in my house, in my pajamas, with only a single guest.

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I am currently putting together an informational kit (in a bag that was donated to me by a member of one of my groups), so my husband has something to grab in the event of an emergency. My dilemma is that I’ve managed to avoid drugs all this time (never had to use my EpiPen), so I have no way to premedicate for things like plane flights, dental work or necessary procedures like a CT scan or colonoscopy (which my doctor has wanted me to get for years, but I refuse because I’m worried about reactions). I have no safe protocol. 13 years ago, I got IV diphenhydromine for anaphylaxis, now I react to 15mg of Benadryl! 5 years ago, I had IV morphine for dysmennorhea, now my breathing shuts down with a crumb of hydrocodone or codeine. What would happen in a real emergency? If I need surgery? Knock on wood, toba toba, ptooey, ptooey. Once I have everything compiled, I will post it here.

Having said all that, I’m really in quite a good place, feeling happy and hopeful about the new year. Maybe because I realise that these reactions are mast cell degranulations and not ME relapses and that takes some of the fear away. Somehow dying from anaphylaxis is less scary than becoming permanently bedbound with ME. Perhaps only people with both illnesses will understand that. So, here’s what I did New Year’s Eve:

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As well as resilience, forgiveness, positivity and optimism, I’d also like to request that 2015 doles out truckloads of health, wealth and happiness to all of us. That’s all. That’s not too much to ask, right? 🙂

On the edge of nobody’s empire. 

As I came into consciousness this morning and rolled over, before I’d opened my eyes, I felt the room tip sideways and then slosh back again. I tried to look at my phone to see the time and my eyes wouldn’t track properly. Like marbles rolling uncontrolled, I couldn’t make my vision focus on one point. And, in an instant, the fear collapses in on me, crushing my lungs, sucking all the air and hope out of the room. I wonder if the vertigo is caused by the way I slept – something physical tweaked in my neck – or my new thyroid medication that I started yesterday, or did I do too much decorating the tree? Was it the drop of milk in my tea? I wonder how long it will last and does it signal another relapse. Having the borders of my world change from the downstairs sitting room to the four walls of my bedroom seems immeasurably cruel. Facebook is a lifeline normally, but torturous today. Christmas cheer, family fun, laughing faces, out and about doing things, going places, making new memories. One friend is going to a play in NYC, others are going ice skating in Glasgow, and a photo of a pumpkin spice latte sends me over the edge.

Every day, every hour, that my headache isn’t too bad or my brain isn’t too muddied and labouring, I focus on a future where I may be able to leave the house, interact with friends, have time elapse without a constant focus on my malfunctioning body and precarious health. But, as soon as there is a shift – my sleep disappears, my muscles are poisoned, this vertigo tilts the horizon away from me with the slightest movement and the room spins sickeningly even while still – despair eclipses everything. I feel like I’m buried alive, dragging my fingernails along the wooden coffin, screaming at the top of my lungs, while people deafly live and laugh six feet above.

This is where I was this morning when Jen Brea posted this song by Belle & Sebastian. I didn’t know the singer, Stuart Murdoch, had severe M.E. I needed this today.

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As I was about to publish this post, my two dogs just got past the gate to the upstairs and both bounded onto my carefully kept-clean bed with muddy boots from tearing around the garden, barking at the passers-by. It is the first time that they’ve been on my bed in three months and it felt like how it must be to have excited children, brimming with life-force, jump into your bed on Christmas morning, holding fistfuls of treats that crumble all over the sheets and wearing smiles of oblivious delight. Yes, their visit caused my world to teeter-totter even more violently, but it also lifted the heartache a little. This too shall pass.

Oh, Christmas Tree. Oh, Christmas Tree…

We’ve always had a real Christmas tree; decorating it and wrapping presents to place under it has been half the joy of Christmas for me. A few weeks ago, I bought an Amazon Local deal: $20 for $40 to spend at a nearby Christmas tree lot and then I realised… we probably shouldn’t get a real tree this year. I am reacting to everything lately and I’ve been bothered by the small tree in my meditation room and the soil it sits in. Last Christmas was the lowest point in my ME journey so far and I’ve gone downhill since the summer, so I really don’t want to aggravate things by having a smelly, potentially moldy tree in the house for a month (most asthma and allergy sites I looked at recommended against a real tree). I even asked in my MCAD group and the vast majority of those that answered get a fake tree.

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So, we bought a fat 7.5′-tall artificial tree from my friend for $150. He said it was used once and kept in a back bedroom all year. My husband opened it up and we let it sit and air out on the porch for 5 days and then he moved furniture and broke his back bringing it inside, setting it up, and tweaking every branch and twig for an hour to make it full and beautiful. When I came through my vapour barrier from upstairs, before I’d even looked into the room and seen it was up, I knew the tree was there. It was like walking into a wall of smell. I couldn’t identify the smell. It wasn’t a plastic smell and it didn’t smell like dust or manufacturing stench, but it was a very large smell. I’d go into the kitchen to get something to eat and, as I walked back into the sitting room, I would stop short as I hit that fetor again. Over and over, the heaviness of it took me by surprise. My throat was burning, I got headachy… Normal issues for me, yes, but I felt like it was the tree. Or, at least, having those symptoms while being enveloped in that smell, correlated them in my brain. To add insult to injury, it is a really high quality, pre-lighted tree and the lights are SO INCREDIBLY BRIGHT in our small room, that it hurts both of our eyes and leaves spots in front of our vision. I thought bright lights were a selling point, but not in my world, of course. Central immune system sensitization is like an evil super power.

My husband, stony-faced, took it back outside while I apologised profusely for my fucked up body and my inability to do any of the heavy lifting. The guilt can be all-consuming.

I spent the next three hours shopping online for hypoallergenic artificial trees or green/healthy trees to no avail. Then I went on Ebay to look for metal trees and found these two for $100:

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Scentless (hopefully), washable… I started to get hopeful again that there could be something pretty to hang our ornaments on and create a festive feeling. I emailed them to my husband, bothered him at work to take off his rain gear (he’s a landscaper in Seattle) and look at the links (he hated the scroll one, but thought we might be able to do something with the spiral one)…

But then I found these metal trees on a different site:

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Twice as much, but maybe a good investment? I texted my husband again. There are no gold spiral ones left and only 2 black ones! We have to hurry to make a decision! Then I realised that they didn’t even guarantee Christmas delivery. So, best case scenario, we’d get it a few days before Christmas, which just doesn’t seem worth it when the whole pretty and festive lead-up to the day is what I enjoy (plus, it takes me weeks to decorate a tree with my energy level — a few ornaments a day) and, worst case scenario, it’d arrive after Christmas and be useless to us this year… and then probably go on sale in January.

I told my husband forget it, we’re shit out of luck.

Theeenn… I checked my emails. Somehow, while shopping for trees on my phone in my bed at 1am last night, my finger had hit “one click ordering” on Amazon (a really evil option that doesn’t bring you to a different screen to look at your shopping cart or confirm your selection, it just orders it — in “one click”) and we have an artificial “pencil” tree coming in the mail. I emailed the sellers because it said it hadn’t been sent yet: “Accidental order! Please cancel!” They answered that it couldn’t be cancelled and we’d have to pay to return it. To add insult to injury again, it’s not even on Amazon Prime and won’t get here until December 20th. And, of course, it’ll probably smell. And it’s made in China. So, we’re out $320 and our porch will be crowded with fake trees and, even if I manage to sell them on Craig’s List, my husband will be the one who has to deal with moving the trees, meeting the buyers etc. I honestly feel like I could take this all in stride, have fun getting creative and see the lighter side of this, except I’m just so guilty that my husband has to do all the work!

My new plan is this. I’m sure my landscaper hubby has a tall ladder:

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Addendum: Just as I was about to hit publish on this blog post, my husband called me and said, “I’m in Home Depot. The artificial trees are all $300+ and most have fake scented pine cones. I’m standing in front of the tomato cages. They’re 5′ tall and cost $3.97.” Hahaha! Hell yes! I had sent him this photo as a joke:

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We both laughed at the fact that we are going to have a wire tree that cost $3.97 and now I think this will actually be really ridiculous and fun. Happy Christmas! 🙂