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.

Update… Aborted. Again.

I’ve been trying to write an update for so long. It’s been 5 months since my last one. There’s been so much that I wanted to document, that it started to feel like a Herculean task to catch up and my symptoms have been such a rollercoaster, that I never seem to find an opportunity. When I have some respite, I cook, bathe, deal with insurance and appointments, tackle laundry, play with my dogs, sort through finances etc. Aaannd… I just hit a wall. Just like that. As I typed, I could feel my brain clogging up. I picture all the little ATP molecules grimacing, gasping and dragging their feet like the characters at the end of Stephen King’s story, The Long Walk, dragging themselves along until collapse is inevitable. It’s a shocking feeling. Mentally, I was really clear for about an hour this morning. Felt like I could write. Dreamed up grand plans for my day (make granola! call a family member! blog post!). I answered a few emails, talked to my husband a bit and then wrote this… And it’s gone.

My neurological symptoms are horrific. “Brain fog” is the best of it. I’d take lack of concentration, not being able to find words, memory problems any day over what I’ve been experiencing this year. It feels like physically–physiologically–my brain grinds to a halt. My eyelids get heavy, my vision gets blurry, my ears roar, I start slurring. As I’m writing this, it’s getting worse and there’s no pushing through. My body feels okay, my stiffness, weakness and pain levels are manageable this morning, but I can’t push through this neuro stuff. Even if my body feels capable of going to the park, my brain insists on being in bed with ear plugs and eye shades. I can’t even watch dull tv or listen to a meditation. It’s incredibly frustrating and quite alarming. And, in a clinical way, I am fascinated by the trajectory of my symptoms over the past four years.

Year 1 was horrific viral, malarial, drenching sweat, nighttime hell and constant chills. That ended for the most part in Year 2 and became predominately “nightly flu” and pain, pain and more pain. Year 3 was the best of times and the worst of times: a bedbound, suicidal winter (when I finally got the permanent ME/CFS sore throat) turned into a much more stable spring and summer after my pain eased up. Year 4 started in a deep, reactive crash and became the year of crippling neurological symptoms. Year 5 (which started at the beginning of this month) so far is all over the place. My main focus is to work on the symptoms that have been with me throughout all of these years: sleep dysfunction, headaches, hypotension and infections. Plus, social contact would be good.

I have to power down now. The long-awaited update will come soon, I hope. I have so much to say.

November Update

[Written Sunday morning:] Every morning I get up and vow to write some of the things crawling around my head and gnawing at my brain and then every day disappears into other things: cooking, feeling like crap, interacting with friends in my facebook group, reading, researching, tv… Today, I’m sequestered in one room while the cleaning lady tackles the rest of the house and I want to do a wee catch up.

Two months after the horrific Cromolyn-induced crash, I’m feeling much better. Not as good as I was beforehand, but so much better than I anticipated I would. If it takes 3 or 4 months to get back to where I was, that will be great–much better than the years I thought it would take (or the never I feared might happen). When I got home from the AirBnB rentals, my husband had cleaned out my bedroom: no furniture besides the bed and bedside table, no more clothes or books, everything hoovered and wiped down with ammonia. He put a vapor barrier up at the top of the stairs–one of those plastic doorways used in construction sites or the house in the film E.T.–and the upstairs is strictly a dog-free zone. Oh, it breaks my heart not to be able to snuggle with my kids and it crushes me when they hear me moving around and whine at the gate we have across the stairs. Another downside is, I’m doing far fewer preemptive rests and meditations because I don’t want to leave them and go upstairs. It used to be our routine to head upstairs a few times a day and lie down. My Little Guy had the times programmed in his brain and would bark to come in from outside and look at me like, “Let’s go, Mama! You need to meditate.” That doesn’t happen anymore and my brain and body are feeling the effects. However, I will begrudgingly admit that it is really reassuring to know that I am spending 12 to 15 hours a day in minimal dander and dog hair. I wake up feeling cleaner internally. That has got to help my poor struggling body, so I’m very grateful for all the hard work my husband put into dedogifying the upstairs.

What it used to be like:

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What I see now from the top of the stairs:

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I haven’t been sleeping very well. Much better than when I was horribly sick, of course, but not as well as I was in the last two rentals. My sleep in that last rental was amazing– I would close my eyes at 11pm and open them at 7am. A few nights that I was there, I woke up after 8am! Never, ever, ever have I slept straight through for over 8 hours without waking up from crazy dreams or painful bones and muscles. It was glorious… besides the fact that I felt poisoned by the new Ikea wardrobes. I wonder if the off-gassing from the new furniture was somehow drugging me into a stupour? Also part of the problem is my apnea devices. I continue to avoid the CPAP because it wakes me up constantly, but the new oral appliance has its own issues. I got the Narval by Resmed, made by a 3D printer.

The white one is the bendy, light Narval. The pink one is the heavy, rigid nightmare I was trying to use before.

The white one is the bendy, light Narval. The pink one is the heavy, rigid nightmare I was trying to use before.

It is incredibly thin and light and bendy, which is everything I wanted and I’m able to fall asleep while wearing it… BUT. … I have worse TMJ issues than I realised and it causes so much pain. Every day, my jaw hurts, my temples ache, my head hurts and then, about once a week, I have a really rough, tense grinding night and I wake up feeling like my jaw is dislocated. It is painful to move and chew and clicks alarmingly. This can’t be good. So, I keep sleeping with no oral appliance or CPAP and I can definitely feel the difference in how I feel in the morning–less rested, more pain, but my jaw in tact. So, what am I to do?

I’ve started seeing my “physical therapist” again. Aka Magic Fingers. He is so wonderful for me. After a 3-month hiatus, the day I returned happened to be the day after he finished a course on strain-counterstrain for the nervous system. The teacher of whatever magic he does flew out to Seattle from the East Coast and trained a group of 30 practitioners. He said, “I’m one of only 30 in the world that have been trained to do this and you are the number one person I want to work on because your nervous system is a mess.” I keep my appointments with him no matter what. I even went last week when he was getting over a cold.

Speaking of colds, it has been 3 years and 19 weeks since I last had a cold. I’m amazed by that. I still live in fear of the day I catch a cold, especially since Dr. Chia said one virus could wipe me out and set back my recovery significantly, if not permanently. You may remember that he recommended I get IVIG to bolster my immune system and protect myself from all you sickies out there. Well, my MD referred me to University of Washington Immunology and they turned me down because my total IgG wasn’t low enough. So, I talked to my ND, Dr. W, and their clinic isn’t licensed to do it. On a whim, I went to see another ND, Dr. I, at a different clinic–mainly because they take insurance and I wanted to have a back-up doctor if I had to stop seeing Dr. W (who does not take insurance and, even with discounts for being unemployed, costs me too much money). The first thing Dr. I said when I came in was, “I think you need IgG.” Oh, bless her. There is hope for this treatment! But let me back up…

So, this new clinic requested all my test results in advance, they photocopied the entire binder and the doctor had reviewed it before I got there. They asked me to run my 23andMe results through MTHFRsupport.com and send them the results (so far, I’ve had 3 doctors tell me they know about methylation and nutrigenomics, but not a single one actually has addressed it. See some of my MTHFRsupport.com Genetic Variance Report here). The clinic has an IV infusion room, looking all dim and cozy, with plush recliners and blankets. They have a hyperbaric oxygen chamber! Something I have been curious about trying for over a year since I read Dr. Deckoff-Jones’s blog. And the clinic is 4 minutes from my house. Score. Dr. I ordered a load more tests and is willing to consider sub-cutaneous immunoglobulin first since I’m a scardy-cat about jumping right into IVIG (assuming we can get either of them approved by insurance, that is). A few days after our appointment, I went to the lab for a blood draw because she wanted to get updated tests and I see her again next week.

It'd be nice if they left some blood in my body.

It’d be nice if they left some blood in my body.

Speaking of test results (which can all be found here), I never mentioned the hormone panel and blood test results ordered by Dr. W in the last few months [bold type is for my benefit, so I can access this info easily when I look back). My varicella zoster IgG, IgM and HSV IgM were all positive. All coxsackie A viruses were high and all coxsackie B except for 3 and 4 (although 4 was high in Dr. Chia’s tests). EBV IgG was high indicating a reactivated infection. My total IgG was even lower than when Dr. Chia tested and, as I mentioned before, my thyroid was tanked: TSH, T3 and T4 all low. But the hormone panel was slightly alarming: almost everything was low: DHEA, progesterone, testosterone, estrone, aldosterone, androsterone, pregnanediol, tetrahydrocortisol and on and on. Not sure how concerned I should be, but Dr. W put me on topical DHEA (about 5mg rubbed into my abdomen in the mornings) and supposedly that should help something. It’s been a month now and the only difference that I’ve noticed is my period was 3 weeks late after I started it. My period has pretty much been every 28-29 days for 25 years. I just descovered today that it has MSM in it, which I’m not meant to have because of my sulfur issue. I’ll ask her about it when I see her on Wednesday.

So here’s what I’m taking currently:
Topical DHEA
Probiotics
Riboflavin-5-phosphate
Trace Minerals
Vitamin C
Vitamin D3
Vitamin K2
Fish oil
1/3 of a capsule of B complex #6
Magnesium
Biotin sporadically
Zinc sporadically
Charcoal sporadically
Quercetin sporadically
Gentian/Wormwood sporadically

I also started oil pulling a few times a week (when I remember) against my better judgement, but my nutritionist thought I should give it a try, so, why not?

I try to use my dry skin brush about once a week.

I am in my third month of Restasis and my eyes are worse than ever. They are never not bothering me. Swollen, itchy, tingly, burning, blurry, gritty. Always.

I have a new pillow, which is a god-send for my bursitits in my shoulders, but I had to let it off-gas outside for over a month. It still slightly concerns me, so I emailed Dr. Bob and here’s what he said: “We do not use flame retardants or any other harmful chemicals. On the Amazon site you can see our product obtained the Oeko-Tex Standard 100 Certification. This is a difficult certification to receive and shows this testing lab certifies the pillow is free of harmful chemicals. Oeko is the best know lab and certification for products to be free of harmful chemicals.” Hmmm… well, this thing stinks and I hope it isn’t off-gassing into my brain.

I love love LOVE having short hair. Can’t believe I didn’t do it sooner. Hair is such a nightmare when you’re sick and the cut disguises all the hair loss in the front.

Grainy photo, but you get the gist.

Grainy photo, but you get the gist.

What else?

I’m still on a modified AIP (autoimmune paleo) plus low-histamine-ish diet. I am not strict on AIP or low-histamine becasue I’m always trying to reintroduce foods back into my diet so I can have as many nutrients as possible and don’t develop even more sesntivities. I constantly warn everyone on my Facebook group not to take an elimination diet lightly and add back as many foods as possible as quickly as possible. It becomes a trap. Eating fewer foods causes a host of new issues (in my case, gastroparesis, worsening constipation and odd reactions that I never had before embarking on AIP). Also, the longer you don’t eat them, the harder they are to get back — both physically and mentally. Hence the reason I never eliminated ice cream, chocolate and packaged chips. God forbid I lose my unhealthy addictions. I need the soul food (although, I do really think one of these days I have to see if I feel better without sugar in my life. It’s just that it was easier to quit gluten, dairy, drinking alcohol and smoking than it seems to be to even contemplate eliminating sugar for a few weeks). One of these days I’ll write a post on what I eat on this diet, but, in the meantime, you can see photos on my Instagram account, if you’re interested (minus all the crap I eat–I’m trying to inspire people, after all, not cause them inflammation).

We ordered a free-range, organic, recently-harvested, fresh (not frozen) turkey for pick up today for Thanksgiving, but, to keep histamines low, we have to roast it right away (and then my husband freezes the leftover meat for me and makes bone broth from the carcass), so we are celebrating Thanksgiving today. We were going to have a get-together with our friends, Z and J, and my sister and her boyfriend (hence the cleaning lady), but it fell through, so the two of us are going to sit down to a 12-pound turkey alone. It’s ok. I’m thankful that I was feeling almost well enough to have some people over for the first time in 2.5 years. I’m thankful that I still have some people in my life to invite over. I’m thankful that I will have a yummy dinner and I don’t even mind that almost every meal I eat looks like Thanksgiving dinner and there really won’t be any different fun stuff. At least I’ll have turkey instead of chicken. And maybe the tryptophan will help me sleep!

Speaking of food, I’m starving and the cleaning lady is in the kitchen. I don’t want to get in her way or have to chat, so I’m trying to think of what else I can tell you all.

I made it to the freezing cold cemetery on the scooter for about 40 minutes a few weeks ago, wearing about 5 layers and carrying a hot water bottle. It was literally my first time spending some time outside in a month. The winter is hard that way. It really feels unhealthy to be trapped inside 24 hours a day. I have to make an effort to put on my coat and hat and go out into the garden. Please remind me!

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We bought a proper comfy dog bed for the kids seeing as they are arthritic and bony (it was on sale, has no fire retardants and is returnable at any time, even if used). It’s the size of a small country. 110-pound Bowie is thrilled when he can actually lie in it and Little Guy doesn’t relegate him to the crappy small bed.

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I found ants in my room one morning. They were running in droves all over the floor. It took days and days to kill them and there are still carcasses strewn about. It was pretty gross.

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I’m still going to therapy. It’s been great recently. He’s very interested in cultural history as a jumping-off point and that is helpful for someone who mourns the loss of Ireland and regularly starts blubbering over how powerfully I miss it.
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I have a lot of issues to work out there– An American by birth who never questioned that I was Irish, but wound up back in America and then felt rejected by the country I love… Marrying a man with an identical upbringing and thinking, “how perfect! We can relocate back home,” but it’s not home to him anymore… staying in America by default, year after year, but always wishing I was in Ireland and planning the eventual return… and then getting a disease that stops me from returning, so I have no choice, anyway. My therapist asked me if I’d be able to manage my illness better if I were living in Dublin and I said yes because my mother, aunt and best friend live there. And so does my heart. But it’s a difficult place to live and we’d have no money, so that’s not the answer.

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Ok, I can’t avoid it any longer, I have to eat. And that was really dredging the bottle of the barrel for stuff to tell you about.

I’m thankful for all of you, too, dear readers. You have no idea. Love and thanks and nom nom nom gobble gobble to everyone this week. X