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? 🙂

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Doctors, Tests and Direction.

So, the MD that my husband and I have seen since 2007 has left her practice abruptly and I’m quite sad because we had a great relationship and mutual respect. She trusted me and would run tests that I requested if I had good reasons. She also knew me before I was sick and that was very important to me. She knew me when I was bouncing off the walls with energy and happy. She saw me a week before ME hit for a check up and I told her my only problem was sore muscles which I attributed to sitting at a desk after so many years walking the floors of restaurants. She witnessed the abrupt change in my abilities when all the other doctors I’ve seen have nothing to compare my current level of health to.

Now my two doctors are naturopaths: Dr. Erin and Dr. Kim. I had follow-ups with both of them in the last 10 days. Dr. Erin has put me on 25 mg of DHEA and progesterone. They’re topical, compounded only with coconut oil, nothing else. She’s hoping these will feed down both pathways to raise all the other hormones that are low.

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And by “pathways”, I mean, instead of giving me just Pregnenolone (at the top of the “map”) and letting my body do with it what it wants, the DHEA and progesterone insure that (in theory) I’m feeding all branches of hormone production:

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My thyroid hormones continue to be low, even though I almost doubled my dose a few months ago, so I’m changing to compounded T3 and T4. Dr. Erin doesn’t want me to try NDT (natural desiccated thyroid from pigs) because I’m so reactive right now, but she’s hoping compounded meds without the crappy gluten- and dairy-derived fillers will help me absorb the hormones better. I’m really nervous about the change because I’ve taken the same generic pills every morning for 6 years — well before I got sick.

My salivary cortisol test showed high levels throughout the whole day, especially at night. However, Dr. Erin said she thought functionally I was still low, her theory being that my body is compensating for something and that cortisol is either being converted to a less active form or receptors are down-regulated, which results in my body needing to produce more to get the same results. She also wants me to start humic acid (for chronic infections) and a homeopathic lotion to rub into my sternum which can supposedly desensitise my body and help reactivity. Not sure how much faith I have in homeopathy, but there’s no harm in it, other than the cost. I’ve also been told to start daily “hydrotherapy” (basically, hot and cold towels to boost immune function) and oiling my body to absorb additional fat (some serious old wives’ shit going on here).

Dr. Kim ran a bunch of blood tests. The good news is my CBC, metabolic panel, folate, iron and vitamin D are all within normal range (the latter two I would like to be higher). The bad news is, total immunoglobulin and all 4 subclasses are even lower than they were when Dr. Chia tested them. I also had high levels of Mycoplasma Pneumoniae IgG, HHV6 IgG (which I already knew) and she said I was “dripping in EBV.” Gross.

The final blow was candida is high. Those who know me, know I have dreaded the day I was tested for candida and purposely didn’t bring it up with the last 30 doctors because I don’t want to face my sugar addiction. Dr. Kim isn’t insisting I go on a strict no-sugar diet, god love her, because I think she recognises my need for the joy it provides and, really, I try to be responsible — a bit of dark chocolate, ice cream, some honey, jam, fruit, dates… It’s not like the good ol’ days where I could eat a Dairy Queen Blizzard or a whole purple Yorkie without thinking twice. She is putting me on a prescription anti-fungal, Nystatin, a pulsed dose — 4 days on, 3 days off.

I am waiting to hear from insurance about sub-cutaneous IgG (because I’m too scared to start with IVIG) and, in the meantime, I am starting to supplement copper, low dose B-complex, additional B6 and B1, increasing Thorne Trace Minerals to twice a day and magnesium glycinate to 4 times a day, as well as homemade electrolyte water all day long.

I’m hoping and praying that I will feel like a different person once my hormones and thyroid are balanced. Then my blood pressure will come up and my brain will work better, headaches will dissipate, my immune system will be able to suppress the infections, sleep will get better, reactions will fade, fatigue will lift and we’ll all live happily ever after!!

Doctor Love/Hate

A few weeks ago, I had the follow up with the rheumatologist I saw in January. The one who came highly recommended by multiple doctors I’ve seen. The one who spent over an hour and half with me at our initial appointment. The one who wrote the most thorough and accurate notes on my history and even sent them to me. The one who ordered spine x-rays, a DEXA bone scan, blood work for inflammatory bowel disease and who did a quick ultrasound of my shoulders. The one who knew about the pretty much unknown mast cell activation disorders and even knew most of the tests to order. The one who wrote a book called, “You Don’t Look Sick.” … So, you’d think he’d get it.

At one point, he asked, “Why are you in bed so much?”
I wasn’t sure how to answer. This was my second appointment in a row; I’d previously spent a useless hour with my therapist, not having anything to talk about and feeling out of place. Maybe my brain was ticking over even slower than I had realised.
“Because I’m sick…”
I thought he understood my illness because of the thorough chart notes, but I’d have to reread them. Maybe he didn’t understand the key part about ME and post-exertional malaise (second worst description of anything, ever, after chronic fatigue syndrome). Maybe he didn’t quite get that my battery dies very quickly and, if I push through, I’m in a world of hell and the battery never quite fully goes back to where it once was.
He said (and this is a direct quote), “If your hope for the future depends on getting disability, you’re not going to get out of bed.”
And then my brain blew up.

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I know many, many people have dealt with this sort of thing before — this blatant skepticism about their illness — but I hadn’t. Nobody had ever questioned me to my face. I didn’t really hear anything else he said after that because I did a white-out with fury. This manifested itself with me bursting into tears, unfortunately. I told him I wanted to make it clear that I wasn’t in bed to try to get disability. He said something along the lines of: “It may not be that you’re a malingerer [I remember that word clearly], but that you subconsciously are staying in bed because you need the money.”
Wow.
I was raging. After waiting two years to apply for disability in the desperate hope that I could go back to work… after going from a happy, high-functioning person to practically an invalid… it was too much to think this might cross somebody’s mind. Why would I want to give up my whole life to get 1/10 of the money I used to make? I cried the whole way home. I kept thinking about it and crying the whole evening. Granted, I was premenstrual, but my anger can’t come out in yelling and stomping anymore, so it just bubbled out in tears. Would he have said that if my husband were with me? Would he have said that if I were bedbound with cancer?

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There was slight vindication when he told me I had to try increasing my steps and I told him I have: from 500 in January to 1500 now.
Then he said I had to try “bicycle yoga”, lying down and I said, “I do! I try to do yoga poses and gentle stretches whenever possible.”
Then he said, “You need to come in here with a list of your current symptoms, your meds, your questions and concerns.” I waited for him to finish drawing an example of the page he wanted me to write and then I told him: “I did — it’s on the back of that sheet of paper.”
“Oh, I didn’t look at that,” he said. “A+.”

Amazingly, after this conversation, he told me my clinical diagnosis was mast cell activation syndrome (MCAS) and prescribed Cromolyn.

I smoldered for a week and then went to see my therapist who works in the same clinic and has known Dr. O for 37 years. I let loose on him. I railed for a full 45 minutes and was completely supported and validated. He said he’d seen it happen before and that, typically, when Dr. O is called out on his behaviour, he is blind to what he did and remorseful. He read me the notes that Dr. O had written and they were great — he wrote that he wanted to treat me for MCAS and also continue to look at inflammatory conditions, that I wasn’t depressed… There wasn’t a mention of ME in the notes and that’s how I wanted it. I went to him in the first place for his diagnostic talents, to have someone search for other possible answers. So, I’ve decided to give him another chance. My therapy session completely calmed my outraged soul and I’ve let it go. I think I will write Dr. O a letter when I feel up to it, explaining professionally why he was bone-headed and offensive. I’m actually looking forward to seeing him again, so I can be the calm, assertive person I normally am with doctors.

So, about MCAS: I haven’t dealt with scary symptoms (anaphylaxis, tongue swelling) in years and I react terribly to most medications, so I’m hesitant to start treating with mast cell stabilizers, histamine blockers or other anti-inflammatory drugs besides Prednisone. However, I wonder how many of my daily symptoms could be caused by mast cell problems (GI issues, bowel swelling, headaches, fatigue, brain fog, sinuses, pain etc.), so I’m also excited to have this diagnosis and the treatment options available. There’s also a teeny tiny part of me that whispers, What if your only problem is MCAS? What if mast cell problems caused everything from anaphylaxis until now? I don’t believe that — of course it’s multifactorial and involves many different pathways: immune, neurological, endocrine, gastrointestinal, vascular — but, there’s still a seed of excitement that something might make a difference.

Update: Symptoms and Doctor Appointments

Where to start? I am so behind on chronicling my life. You’d think it would be a one-liner (“Stayed home this month again, felt crappy, tried to keep spirits up.”), but there are so many subtleties to symptoms that I keep meaning to mention and so many tiny tweaks to treatments. There are so many interesting articles and blog posts that I want to comment on here and so many reasons to be hopeful and frustrated at current medical endeavors. I’ve written 100 blogs in my head this year that I thought were important and interesting ~ maybe even entertaining ~ but they never made it to the page and I’ve forgotten much of what I wanted to say. So, today, just an update.

Symptoms

First, the good news: my throat hasn’t been very sore in a while (if I don’t talk too much); my pain (below the neck) is minimal (if I don’t move too much); my dizziness is better (if I don’t stand up too much); my mood is ok (if I don’t think too much); 🙂  Haha, writing that was actually cracking me up! But, seriously, the underlying perma-symptoms of ME are stable and predictable if I don’t change my life up too much: exhaustion, achiness, tremors, horrid skin, blurry vision, stiffness, and fluishness are all manageable and (my) normal. The reality is, I feel unwell all day every day. Sometimes it makes me feel like I’m okay, I’m going to be fine and sometimes it makes me feel like I don’t want to die, I’m scared, I can’t do this anymore. My most pressing concerns lately have been, of course, the headache, terrible sleep, horrific bloating and constipation, and my free fall into less and less mobility and activity with higher and higher heart rate. Also, my brain torpor frightens me to the point that I can’t talk about it.

Thankfully, my brain pain train morphed from the high-speed TGV** to a kiddy carnival choo-choo. It still comes chugging through my skull in the afternoons and after I stare at a screen for too long, but, for the past 4 days or so, it is not torturing me. I stopped taking my Chinese herbs for a week; I don’t know if that is what caused or helped my headache, but I started them again yesterday (back down to 1/day) and we’ll see what happens.

3 weeks ago, in a place of desperation and panic about my disappearing sleep and unrelenting headache, I rummaged in my “Drugs I Don’t Take Drawer” and found gabapentin. The first night I took about 50mg (half a pill) and immediately my sleep was better. I still woke up a lot and it was unrefreshing as ever, but I slept for 8-9 hours rather than 6. That slice of heaven lasted a little over a week and now I’m back to the same terrible sleep, exacerbated by a very rare Seattle heat wave with no air conditioning. I added melatonin and went up to 150mg of gabapentin, but no relief (unless the gabapentin is the reason my headache is a better). I was prescribed trazodone for sleep, but haven’t gotten the nerve up to take it yet. I had planned to increase my dose of gabapentin first and then add doxylamine succinate and then swap the doxylamine for trazodone, if needed. Maybe I should just swap the gabapentin for trazodone since, just like last year, the gabapentin has caused awful constipation.

Let’s talk about that a bit. Within 48 hours of my first dose, things just stopped moving. It’s reached critical mass. I take a stool softener, I put soluble fiber in my tea, I drink raspberry leaf tea (thanks to a tip from Jess over at My Journey Thru ME, who wrote a great post on IBS), I take 400mg of magnesium before bed and I have been taking Miralax every single night. I’m still in bad shape, very uncomfortable, and worried that this is more dangerous than it would be in a healthy person because of my gut dysbiosis. The Good Doctor said, “You have to keep things moving because your bowels are in bad shape.” I think I’ll actually have to stop gabapentin to get back to normal.

My scariest symptom lately is my inability to do any activity without my heart rate skyrocketing. I’ve been sitting on the bathroom floor, washing my cpap equipment every week for the last 8 months. It’s never been an issue. Yesterday, my heart rate kept revving up to 110+ bpm while I sat in that same position, doing the same slow, careful scrubbing I’ve always done. This keeps happening. Taking pictures in the garden, reaching up to pick berries, talking a little too animatedly, putting sun cream on, adjusting a blanket, petting the dogs… Normally, if I were sitting down, these activities wouldn’t cause problems. Now, even sitting or lying, I feel that telltale sign (which initially registers as breathlessness, not as tachycardia), look at my HR monitor and am surprised every time: Oh, what was I thinking jiggling my foot while talking at the same time? How dare I wash my hands so vigorously. I should know better!

I can’t help thinking it is a direct result of deconditioning. It could be a direct result of illness ~ I know this is common is so many of us ~ but, the less I move, the less I’m able to move and that scares the shit out of me. So, every day I wonder: Should I push myself to “exercise” more so my body maintains some strength and life force? Or is that exactly what got me here and I should do less, less, less? This is one of the many contradictory evils of this disease: The less activity you are able to do, the more you panic and want to try doing more.

Medical professionals

I’ve had a some new appointments in the past few months:

1. An amazingly wonderful physical therapist whom I have been seeing each week. He is not really a PT; I don’t know the name for what he does. I lie on his plinth (I learned this name when I said to him, “That pain made me come off the bed. Sorry ~ ‘table’.” And he said, “Actually, ‘plinth’.”) and he finds the rotten-apple spots in my muscles and then eliminates them by restoring the circulation with magic fingers. I don’t have to move and there is very little energy expenditure (besides our tendency to talk nonstop about music, movies, books, and food. We never talk about my illness except for the initial update on my current problem areas. I probably chat more “normally” to him than anyone else in my life and always leave smiling ~ that, in itself, is worth every penny and drop of ATP). This treatment is the number one first time I have had a very obvious FIX to a problem. He worked on my lower spine pain and coccyx burning and, that evening, IT WAS GONE. And it stayed gone! He’s a magic man.

2. Stupidly, obtusely, naively, I went to see a cardiologist about my BP and HR issues, plus the fact that bowel rumbling triggers a sort of vasovagal heart flutter and lung tightening. I’m sure most of you people with ME know what’s coming. This doctor said, “I see a lot of you girls with low blood pressure and syncope problems and you all have one thing in common: low body weight. You need to gain some weight. Eat more protein and salt. I know everyone is concerned about being thin and looking good, but it’ll help. Start walking more and lifting 5 or 10lb weights and come back in 6 months.”

As carefully and stoically and graciously as I could, I said, “I am 5 foot tall. This is the heaviest I have been since college. [Here he interjected: “Right. And I bet you feel better.”] No, I don’t feel better, you moron. If I gain weight, it’ll just be fat because I can’t move very much. I don’t care what I look like because I’m just trying not to die I don’t ever get dressed or leave the house, you condescending bastard. I can’t imagine using 10lb weights because I wouldn’t be able to leave the bed for weeks can barely lift my arms, but I’ll try increasing my steps. See you never.” He’d be happy to know that I have since gained another 5lbs from the gabapentin and, shockingly, I don’t feel any different except I am even more uncomfortable in my body than I was last month (and, no, Dr. Iseealotofyougirls, I don’t mean uncomfortable with how I look, I mean it is not comfortable to lose most of your muscle tone and gain 12lbs of fat in its place!)

3. The saga of the oral appliance (OA) for sleep apnea. Here’s the wrap up: I saw the orthodontist in April, waited over a month before being told I had to see a sleep specialist again for insurance to approve the OA, and then waited over ANOTHER month before being called in to fit the OA (a 2 hour appointment!). I slept with it in for 5 hours and woke up in extreme pain. Yes, it had the obvious repercussions, such as temporarily changing my bite and making my TMJ sore, but the big problem was pain stabbing into my top and bottom right canines. It felt like they had been drilled into without anesthetic. So, back to the orthodontist for another fitting, which ended in a decision to send the appliance back to the lab for tweaking. Milo’s Law: if it can go wrong, it will go wrong for me. It’ll be another 3 weeks before it comes back from the lab.

4. On a good note, after I saw my GP, she sent me a letter saying she was shocked by my decline and panicked to find something to help me and sorry the medical community is failing me and honored that I allowed her to take this journey with me. I wish I could reprint the letter here because it could restore some faith in medical professionals, but I want to be respectful of her privacy. She is leaving for her annual 2-month break, but is seeing me next week on her last day and is willing to run some new tests (finally!). I’ve researched nonstop for the last month, trying to decide what tests to request, but I’ve ended up more confused than when I started. I need to email her tomorrow with my list. If anyone has any advice, please let me know. I can always talk to her about additional tests at the appointment. Here are my thoughts:

  • Mycoplasma tests
  • Cytokine profile
  • NK cell function test
  • Hormones (ACTH, LH, HGH, testosterone, insulin like growth factor(?))
  • RNase L Panel
  • Immunoglobulin
  • Lactic acid
  • folate
  • DHEA sulphate
  • Heavy metals
  • Amino Acid
  • IgG (?)
  • potassium, copper and …?

For disability (but really don’t want to do):

  • Neuropsychological Testing
  • VO2 Max (although it would be a 1-day stress test done by somebody who doesn’t know about ME)
  • tilt table test

 

Daily gratitude:
I am grateful for the few friends I have.
I am grateful for the few hours I sleep.
I am grateful for the little energy I have.
I am grateful for the still life I lead.

** I’m sure there are faster trains now, but, back in the 90s, I took the TGV all over Europe and its speed made a lasting impression. I still say “tay gjay vay”, pronouncing the letters in French, which is how I learned it.

Oh My Good

I have had a remarkably good four days, but my mother thought I was having a not-so-good week because my blog had mentioned how stiff and achy I was. So, to clarify for the readers and for myself when I look back at this post months from now: “good” means the exhaustion, discomfort and pain are bearable – are livable-with. It’s not what I used to be pre-ME, but it’s doable. Billions of people live joyful, fulfilling lives with these issues.

My baseline at the moment is constant fatigue, muscle aches and stiffness, the latter being worst in the morning. I always have pain – mostly in my neck and lower back, the bottom of my spine, and the back of my hips – that whole “hinge” area. I always feel like I have a slight cold. Often this feels like full-blown flu, but, on good days, just a wee head cold without a cough.

Good means I’m not too crippled to move by muscle pain or viral chills or the thickness of inflamed fever. I’m not rendered a squinting, grimacing statue from noise and light intensifying a skull-cracking headache. Good means I can stand up and stoop over, I can talk and interact – not long and not too heartily, but with minimal effort for short periods of time. Good means I feel stronger. This, I’ve discovered, is vital. Not stronger as in muscle strength – it’s shocking how physically weak I’ve become – but stronger in that I could and can handle things better. Just a slight increase in my overall fortitude – as if I could lose sleep and be okay… Or make a meal or have an argument or deal with a (small) emergency and be okay.

It’s a small shift, but it’s freeing because it gives me confidence and hope. It’s the first step towards laughing with gusto, animatedly talking to more than one person at a time, playing with nieces and nephews, hiking, running, dancing, singing… Good means, in this moment, overall I feel happy.

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