The last 10 days have been a bit harrowing. Different symptoms crashing down like waves each day. First let me tell you about our early Thanksgiving dinner with just the two of us.
Everything was made from scratch with the freshest ingredients. The only thing we didn’t do is grind the almond flour ourselves. Here’s what we had:
The turkey was pastured, free-range, organic, fresh (not frozen) from Rain Shadow Meats, our specialty butcher here in Seattle. They had 400 turkeys in a truck parked outside their shop and my husband tells me it was a chaotic scene picking it up. The smallest bird they had was 12 pounds and we didn’t want to store it, waiting for Thursday because of histamines, so we put it in the oven as soon as my husband got home. He roasted it upside down, so it’s a funny looking photo (and these aren’t the greatest photos becasue it was dark in our house):
I eat roasted root veg and mashed sweet potatoes and Brussels sprouts and other green veg all the time, so I decided, for a treat, to have a “stuffing” and cranberry sauce to go with my turkey, while my husband made himself potatoes and corn. The stuffing was based on Mickey Trescott’s recipe, but I left out the mushrooms and cranberries. I added fresh rosemary, parsley and a few cut up dried cherries for a zing every few mouthfuls. I also made a paleo “cornbred” (no corn in it, but it has that grainy quality from the almond flour) and added cubes to the stuffing becasue — stuffing without bread in it? Really?
The bread itself was delicious and I had a piece slathered in butter, while my husband got to eat those soft, squishy pull-apart rolls that I love so much.
I also made cranberry sauce from fresh, organic cranberries, fresh ginger, apple juice, orange juice and a touch of honey. I have never made cranberry sauce before and had no idea how easy it was. Why would anyone buy it in a tin?
The gravy was made from chicken bone broth, herbs and onions. You blend it with a hand blender and the onions thicken it.
All in all, it was a lovely meal and would have been even lovlier if we had been surrounded by friends and family and laughter and chatting.
Then the tsunami hit.
12 hours after I wrote my last happy, chatty post, I awoke from sleep at 3am, the sickest I have ever been in my life. I know there’s a lot of “sickest I have ever been”s in my world, but this truly was. Not once, in 3 years of ME, when all my worst symptoms happen at night, have I woken my husband to help me. Well, Sunday night, I had no choice. I crawled on my hands and knees to the toilet, shaking violently and drenched in cold sweat. Cold sweats are diffferent than the night sweats I experience. They are what happens right before I collapse with vasovagal syncope. So, it scared me. I thought I was going to lose consciousness at any moment and I was so parched I needed water asap. I crawled back to the bedroom and got my phone and woke my husband sleeping downstairs. He got me water, salt, my blood sugar tester, my blood pressure monitor, thermometer, charcoal and Benadryl. I didn’t know what was happening, honestly. How could this be a reaction to the healthist and freshest Thanksgiving dinner I’d ever had? What has happened to my body that I now react to anything random?
All my vitals were low, but not low enough to be causing the sickness. Once again, I felt poisoned, only this time I hadn’t taken Cromolyn or any other new drug or supplement. My gut told me it was the onion gravy. It was a lot of onions and I know I have digestive issues with raw onions. It could have been a reaction to the onions themselves or it could have been a form of sulfur poisoning. The meal was very sulfur-heavy and I know my CBS mutation* causes problems because it’s shown up in my ammonia, taurine and homocysteine blood tests.
Yes, when it comes to histamine, it could have been the small amount of orange juice in the cranberry sauce or the few dried cherries or, if you belive my nutritionist, the caulifower in the stuffing, but I don’t think so. I eat dried fruit every day and I’ve eaten an orange without problems. Besides, it didn’t feel like one of my histamine reactions. It was much, much worse. If it wasn’t onion/sulphur poisoning, I would say it was the almond flour. I have reintroduced almond butter, but not almonds themselves or almond flour.
I never got back to sleep that night and rested carefully the whole of Monday. After saying in my last post that no matter how I’m feeling I make it to see my physical therapist, I had my husband call and cancel our appointment that day. I ate like a shaky, poisonened sick person, trying to choose foods that would have the least impact on my body in every way, but this started the next symptom wave: blood sugar issues. I had rice, carrots, cucumber and sweet potato for breakfast. My blood sugar was 70 before I ate and 170 an hour after I ate. I had a chicken salad, parsnips, butternut squash drenched in butter, but stayed away from the chips and chocloate and broth I eat every day.
Tuesday, I was 2 pounds lighter — after one day of not eating the high-caloric crap I snack on to maintain my weight. And my blood sugar continued to crash. After years of hypoglycemia, I can usually feel the shakes when my sugar drops into the 70s, but it dropped into the low 60s a few times before I caught it. I increased my protein and starchy veg, I added olive oil, plantain crackers, fresh herbs and lots of pomegranate. I even had to go downstairs to the kitchen at 1am, after I had brushed, flossed and had my mouth guard in to cook up a beef burger and sweet potato. Exhausting.
Wednesday, I felt more stable, but very ME-ish: a bad headache and my spine and muscles felt infected and swollen.
Thursday (Thanksgiving) brought on the next new symptom wave: my blood pressure kept tanking alarmingly. No matter how much salt I ate or electrolytes I drank, with legs up and compression stockings on, it would not come up and stabilise. The best I achieved was 83/55.
This continued on into Friday and, then, towards the end of that night, my whole body was in pain – joints and muscles – which I haven’t experienced in quite a while. My back and my hands felt arthritic.
Saturday, my blood pressure was better, but then came the sore throat and hoarse voice, making it difficult to talk. That night, I awoke 3 hours after going to bed with night sweats and never went back to sleep.
Sunday came a wave of neurological symptoms: poor cognitive abilities, worsening tinnitus, slurring my words, weak muscles, droopy eyes, my numb “buzzy head” symptoms (which signal I need to basically ctrl+alt+delete my brain immeadiately) and a cracking headache.
Monday, my throat and head pain had ebbed, but now it was my heart’s turn. It was hammering all day and fit to burst whenever I moved.
These last few days have been menstrual hell, which is generally an increase in my typical ME symptoms. I would honestly take all the other (probably more dangerous) reactions over the ME-inflamed, painful, exhausted days that feel like someone has pumped every muscle full of poisonous led… These are symptoms I can’t fight through. There is no remedy, no relief. They make me feel like I cannot go on living if they are prolonged and they affect my mood horribly. I can’t see the light at the end of the tunnel, and I get scared and weepy.
But, the good news is, today I’m stiff and crampy, but better, although the insomnia and nightmares have continued all week and I’m in desperate need of a decent sleep. I’ve been eating a very low-sulfur and low-histamine diet since the sickness that kicked this all off and am completely fed up with squash, lettuce, sweet potato and parsnip. My kindom for some kale! Never thought I’d say that. I tested the turkey, turkey bone broth and orange with no reactions. I tried the almond flour bread, but it was inconclusive (this time of the month caused confounding variables), so I might try again next week. I ate a lot of almond butter with no problem and, today, I had cauliflower (my first sulfurous veg in 10 days) with no problem. I still have to try the stuffing and cranberry sauce, but continue to suspect the onion gravy. Such detective work!
The even better news is, we managed to get out to the cemetery for half an hour to watch our pups run in the thin dusting of snow (yes, SNOW!) and, for that, I am truly grateful.
Onwards and upwards. I hope things will ease up until after Christmas.
*”Increased CBS enzyme activity would act to convert homocysteine more efficiently to cysteine, thereby lowering homocysteine levels. Ultimately individuals with the CBS C699T upregulation of the CBS enzyme can generate more sulfur breakdown products with potential sulfur toxicity issues, enhanced ammonia production, and a lack of glutathione.” ~ Dr. Amy Yasko’s book, “Genetic Bypass”
OMG your blood pressure is just ridiculous 😦 How on earth are you even managing to crawl with a BP like that?!
I’m so sorry your lovely dinner resulted in symptoms so horrendous. Why can’t these diseases just let you have a day off?!! It’s so unfair.
Lovely to see pics of the fur babies though 🙂
Sorry for the delayed reply (again). My daily BP is around 82/55 and it always affects me. I feel like a different person when it’s in the 90s systolic. When it’s consistently in the 70s like that, I don’t know how to function. I really don’t want to take salt pills or a Rx, but it looks like that’s what’s next. Thank you for your empathy, always. Means a lot. X
I am so sorry to hear how poorly you have been! Especially around thanksgiving too. Wishing you all the best and improvements. Lots of hugs x
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Thanks H-E! I’m climbing back up. Sort of. So sick of this one step forward, two steps back thing. X
Oh my! I’m so sorry to hear your beautiful spread resulted in such a painful week. I hope the hunt for the cause becomes apparent soon and that you’re feeling back to normal quickly. Plus, I truly hope it wasn’t the stuffing! Eek!
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Three weeks later and I still haven’t figured it out! I froze the dressing and haven’t had the guts to try it yet. But, I really, really want to! Thanks for the comment, Maria.
I’m only liking this to send you best wishes. If there were a large unlike button, I’d have hit that instead! xx
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Thanks, Marie! I like you liking even the most depressing posts. It lifts my spirits. 😉
Yikes! I’m so sorry you ended up getting sick on the holiday! I can’t eat raw onions, which is so disappointing because I love them! I hope you feel better soon!
Thanks, Linds! One of my favourite sandwiches here in Seattle was this Cuban pork with huge slabs of caramelized onions. OMG, nothing like onions done right. 🙂
Oh, I’m so sorry. I know how defeating it is to put all that effort into a meal, and to then react to it. Sounds to me like a delayed allergy reaction. Are you certain that your low BP isn’t caused by anaphylaxis or a partial anaphylaxis? When mine goes that low, that is what is happening to me- there are other symptoms as well, but depending on what you’re taking, the other symptoms could be getting masked. It may be that a dose of Epi is what you needed. I do find that if I have a very serious reaction, and I manage to get it to calm down with benadryl, it gives me all kinds of awful symptoms for days. Don’t take my word for it, I’m not a doc, but it’s something to consider.
Oh, how completely un-fun. I do hope that the rest of the holidays get better! Take care of yourself, and do your best not to get caught up in the ‘shoulds’, I’m doing my best to follow my own advice, but it’s so hard.
And another thing- how come I’m living on MiniWheats, and way too few calories, and I’m not loosing a single pound, and you stop eating your high calorie snacks, and you loose weight right away. Could we trade metabolisms for a while? Why can’t we both just have normal metabolisms? Ach, nah ya.
Karen, it could certainly be some sort of anaphylactoid reaction, but, when I’ve gone into anaphylaxis in the past, it was very typical: couldn’t breath, massive, shifting rash, swollen tongue. At least that is clear cut When I’m this sick without the rash and swollen tongue, I never equate it with anaphylaxis, but, of course, I’m sure it’s all to do with mast cells. I have never had to use my EpiPen, knock on wood. I would definitely have to be in a very dire state to agree to that. In fact, I’d probably have to be unconscious and my husband would have to do it.
I promise you, you do not want my problem with losing weight — it is solely because I’m not absorbing nutrients. No matter how much and what I eat, I don’t digest and don’t absorb and my blood tests show I’m deficient in everything. It’s awful. I don’t want fat, but I would literally give a limb for healthy muscle.
Hope you’re doing ok! Happy holidays! x
Onions (and the rest of the family) don’t do me any good either. I hope things find a more even keel. I don’t like rollercoasters. (Mixed metaphors but there you go!) Hugs. 🙂
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I really will be very upset if I can’t eat onions anymore. But, honestly, I hate the fear of reactions more than the eliminations. Thanks for the empathy. 😦
That’s it exactly, the fear; waiting to be sick, waiting for the stomach cramps or whatever else it’s going to be. I’ve never been a big fan of onions but they’re so incredibly useful. Garlic, now that was a different matter. 😦
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[…] 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 — […]
[…] mast cell/viral/ME/inflammatory bowel reactions that started in September when I tried Cromolyn. Thanksgiving and Christmas were probably the two sickest nights of my life. As soon as I was resurfacing from […]
Mast cell and mold you may want to do a little research.