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Photo update because I don’t have the energy to write a word update and I’ve been snapping random pictures for the last month and thought I would share. :)

I’m still having a hard time finding the energy to write a post. I’m doing okay- it’s mostly because I am feverishly researching all the things my doctors want me to add to my arsenal (methylfolate, methylB12, carnitine, Zyrtec, Zantac, Cromolyn, Baclofen, Valium, Prednisone, Medibulk), as well as what I want to add (CoQ10, D-ribose, bread, cheese, Toblerones :-)).

So, my precious few computer hours are used up on research, emails, doctors, insurance, bills, and more research.

But, if you would so indulge me, I can post some photos of the things going on in my life (of course, with my fun anonymizing effects).

Visitors!

A visit from Baby A. and her Mama….

… my friend, Z.! (and that’s my “little” dog)
This photo was a BIG DEAL: I put on jeans and boots (my first flat pair of boots EVER) for the first time in 17 months. Literally. I have only worn leggings/yoga pants and Uggs/runners every day for 17 months.
Of course, as soon as Z. left, I went back to my PJs, but it’s the effort that counts!

A visit from my mother AND brother!

A visit from my mother AND brother!
Yes, I am standing up and smiling and tolerating photos! Amazing.

Winter Wonderland!

A rare few inches of snow.

A rare few inches of snow.

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FOOD!

Egg challenge. It didn't go so well.

Egg challenge. It didn’t go so well.

Plantain crackers: click image for recipe.

Plantain crackers: click image for recipe.

Grass-fed organic lamb shepherd's pie with cauliflower-sweet potato mash: click image for recipe.

Grass-fed organic lamb shepherd’s pie with cauliflower-sweet potato mash: click image for recipe.

Spice blends from Practical Paleo: click image for link to book.

Spice blends from Practical Paleo: click image for link to book.

An incredible batch of granola for Z. that I couldn't taste because I'm not eating oats at the moment.

An incredible batch of granola for Z. that I couldn’t taste because I’m not eating oats at the moment.

My husband makes me meals and freezes them, like this beef stew. <3

My husband makes me meals and freezes them, like this beef stew. ❤

Breakfast: butternut squash, asparagus and grass-fed beef hash, with a side of apple sauce.

Breakfast: butternut squash, asparagus and grass-fed beef hash, with a side of apple sauce.

A bit of craic, sure.

A bit of craic, sure

Animals? 🙂

Anna's hummingbird outside my window.

Anna’s hummingbird outside my window.

Bowie in the cemetery last month (I haven't been able to leave the house in the last 5 weeks, but I hope to get a February cemetery visit in a few weeks)

Bowie in the cemetery last month (I haven’t been able to leave the house in the last 5 weeks, but I hope to get a February cemetery visit in a few weeks)

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The Seattle Seahawks won the Super Bowl! But Bowie was not a fan of the celebratory fireworks and backed himself into my lap in fear. 😦

Morning spooning.

Morning spooning.

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AIP + Low-Histamine Recipes

Tangerine, tangerine,
living reflection from a dream…

That’s what I was singing this morning. Not just because Led Zeppelin is the best band to ever exist, but because I was unpeeling what was going to be the first citrus fruit to cross my lips in 5 months. Today was citrus challenge day!

I never cared about fruit before ~ in fact, I downright hated it (see this, this and this post) ~ until I went on a low-histamine and low-sugar diet and, suddenly, a grapefruit sounded like the forbidden sweet treat of my dreams. Then, a few days ago, I eliminated oats for breakfast and, faced with the option of nothing but meat and veg in the morning, I started craving fruit like never before. So, this morning I had a sweet, succulent tangerine and tonight I had orange, beet and red onion salsa. Yum! 

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This is a multi-faceted challenge. The Good Doc wanted me to add back in certain things that typically can contribute to fatigue and pain, citrus being one. However, citrus is not low-histamine, so, even if I don’t have a worsening of my usual symptoms, it could be filling up my histamine “bucket”, which could contribute to a flushing episode or angioedema now or in the days to come.

The rest of my dinner was lamb sliders on sweet potato “buns”. We used this Nom Nom Paleo recipe for the lamb (minus the pomegranate molasses). Damn, they were good!

Even though I haven’t written the second part of my Diet post and you’re not intimately acquainted with the hell that is my current food life, I want to post some recipes. So, as I mentioned in my last post, I am gearing up to try a month (or a lifetime) of an AIP (autoimmune paleo)+Low-Histamine diet. The only things I have left to eliminate for the AIP protocol are seeds, almonds and rice.

Here are some other AIP+Low-Histamine recipes that I have loved:

Radish, Mint and Cucumber Salad: This recipe is totally AIP, but, for low-histamine, remove the lemon juice, zest and ACV. I used olive oil, lemon juice and tahini for the dressing because I haven’t eliminated all seeds yet.

This Artichoke-Zucchini pasta recipe is my all-time favourite comfort sauce. I had it just like this over rice pasta (not AIP), then froze the rest and later had it over spiralized zucchini (spiralised courgette ;)) and grilled chicken breast. If you are strictly low-histamine, be careful of the thyme and the arugula.

This Chicken Bacon Alfredo was so good, I ate it until I couldn’t breathe. Strike 1. Then, the next night, I ate the leftovers and had that bad flushing episode I talked about in my last post. Strike 2. So, no more bacon for me. I’m back on the strict-ish low-histamine train. But, without the bacon, it is AIP+low-histamine and I bet it will still be delicious (watch the thyme, if you can’t tolerate it).

I wish I’d taken more photos!

“If you can’t fly, then run. If you can’t run, then walk. If you can’t walk, then crawl, but whatever you do, you have to keep moving forward.”

— Martin Luther King Jr.

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January Update

I don’t want you all to miss out on my exciting life just because I am too ill too write. So, here are the Cliff notes from the last three months:

* An abdominal ultrasound found nothing for the twinge that never goes away. They told me to go to a GI doctor because the ultrasound doesn’t look at the intestines and bowels. I won’t be taking their advice.

* My oral appliance for sleep apnea was incorrectly made for the sixth time. They took impressions again (I’ve lost count now), had it made again, called me last week and cancelled my appointment because something was wrong again and they sent it back to the lab. Again. I’ve gone from disbelieving to irked to irate to laughing to crying and, now, I just don’t give a shit.

* My CPAP machine was still malfunctioning with the whole revving pressure thing, so we swapped it out ~ again. While we were waiting for a new machine, I got three loaners. The first one dumped water all over my face no matter which mask I wore and how little water we put in the chamber. I’d wake up at two in the morning spluttering and coughing from water up my nose. The second loaner’s motor screeched like it was 70 years old and in need of an oil change and I couldn’t get the third one to work properly at all. My permanent replacement is now my third machine (sixth, if you count the loaners) and it seems to be a keeper (albeit still hell to wear a mask).

* I saw an ophthalmologist who said that I am a “glaucoma suspect”. More on that at a later date.

* I had a bad flushing episode while watching the Golden Globes (awards season! My favourite tv time of year!). I can’t remember ever feeling so on fire. I was sitting naked on the couch, red-faced, sweating, ears on fire, nose plugged up, pain in my cheekbone… I’m still trying to figure out what caused it. Lime or leftovers or bacon or all of the above. My husband had to go out and get me Benadryl. I poked a whole in the capsule and dripped about 10mg on my tongue. My god, that’s nasty. If you can tolerate a whopping 25mg of Benadryl, definitely just swallow the capsule. Yeck.

* Then, last night, the first day of my period, I had a bad vasovagal syncopal episode. I hoped these were behind me. I was doing everything right. Lots of fluids, lots of salt, tylenol, in bed, horizontal… But, the minute I got out of bed to scrounge up some food, I went down. This is much different from feeling light-headed because I got up too quickly or feeling dizzy because I simply have low BP. This is diarrhea, shakes, freezing cold, grey pallor, shallow breathing, cold sweats, and very low heart rate and BP.  I thought I was going to lose consciousness and go to the ER, as I have so many times before, but I will fight tooth and nail not to go anywhere near the House of Flu during peak season. Not to mention the fact that I’m scared of IV fluids now that they caused an angiedema /anaphylactoid reaction a few months ago. A ton of salt, electrolytes, and water later, my BP was high enough to register on the monitor (when it’s too low, it won’t register. Gotta get me a better quality monitor) and my heart rate had come up to 60. Again with the biting open of a Benadryl capsule.

I have asked three doctors for help with the mast cell activation tests. I would prefer to have baseline results before I start treating myself with antihistamines and mast cell stabilizers, but they brush off my requests. I research incessantly for help with this problem and, like ME and POTS before it, there seems to be only a handful of knowledgeable doctors in the country and none of them is anywhere near the Pacific Northwest. I can’t help thinking these doctors don’t know what they’re missing. If you knew how amazing this part of the country is, would you really choose to live and practice on the East coast or in North Carolina, Minnesota or Nevada? Really? No offence to all that live in those places! I just watch the weather reports and think quite often, thank god I live here and don’t have to deal with hurricanes/arctic freezes/flooding/20 inches of snow/drought/100+ degree days/tornadoes etc. I like owning one set of clothes.

* My biggest, baddest symptoms at the moment: feeling and looking utterly wasted/half-dead (no invisible illness here!); muscles not working; brain not working; sleep problems; nightmares; eyes blurry; vertigo; shakes; hair loss; headaches; a daily sore throat that feels like perma-strep; feeling overwhelmed. Also, my reactive hypoglycemia and mast cell issues remain a constant threat and, managing them, a constant chore.

* My low-histamine diet attempt (I’ll write more about this in Part 2 of my “Diets” post when/if I’m able to think more clearly) was very difficult and led to more-than-usual blood sugar crashes ~ at different times of day and lower numbers. But I’m still trying to do it, as well as an AIP diet (autoimmune paleo). Oh, I started a Facebook group called, “Low-Histamine + Autoimmune Paleo (AIP) Help.” Please join if you’re another unfortunate with compounded histamine and autoimmune problems!

* I got an Rx for compression stockings, so maybe insurance will cover a decent pair, but have not had the energy to measure my leg or find a medical supply place in the last two months.

* I got a permanent disabled parking permit approved by my GP. I find this really depressing for some reason.

* The Good Doctor ordered the NutrEval test that shows everything about your nutrition and some heavy metals. The test itself was a nightmare. You can’t take any vitamins, supplements or drugs (that are not medically necessary) for four days. That means no sleep help, pain help or poop help. You have to restrict your fluids the day before the test, which, of course, led me to have a blood pressure drop and dizzy weakness in the evening, which led me to drink a bunch of water before bed, which might have altered the test results by diluting my morning urine collection. Then you have to freeze your urine before getting your blood drawn on the same day. The blood draw instructions are convoluted, so I was already skeptical that the phlebotomist would do it properly ~ keep everything frozen and get it in overnight mail. Because, if it’s not your bodily fluids and not your $159 and you don’t know the ordering doctor, why would you be vigilant about the details?

I asked the Good Doc what lab to use for the blood draw. She didn’t know, so she put me in touch with the company rep who told me I could go to any lab ~ “Any lab at all!” I called LabCorp, Dynacare, US Healthworks, NW Hospital, Swedish Hospital and they all said no. I called the rep back. She said AnyLabTestNow.com and Quest labs. I called and they both said no. I called the main 1-800 number for the test company (Genova), they said Pacific Physician’s Labs. All three phone numbers listed were disconnected. Ludicrous! I finally went in person to the lab where I get my thyroid blood drawn and conveniently didn’t mention that this was not my usual doctor from that clinic. They did it, but said they had to courier the samples to their downtown lab and hoped that it would be frozen there and shipped off later in the day. I don’t have faith it made it out of their fridge, honestly. What a nightmare. And this was all done FASTING. Not cool.

* My environmental doctor, Dr. B, ordered a methylation blood test, a mycotoxin urine test and a new Lyme disease test, plus co-infections. The latter tests I can’t afford ($1100+ really?), but I got the results for the first two. Most everything on the methylation test was low (I’ve put the details in my tests page). He told me that I had a MTHFR mutation (what I like to refer to as the “motherfucker mutation”) and my glutathione and all folic acid derivatives were low and I should start taking methylB12 and methylfolate. But I haven’t. Yet.
Also, I got a positive test for something! I tested positive for ongoing mold exposure. Aflatoxin was just on the verge of too high (equivocal), Tricothecene was more than twice the normal range, and Ochratoxin was off the charts high. Unfortunately, if this means moving out of my house and leaving all my possessions behind and living in an aluminum trailer in the dessert, I wish, for once, the test hadn’t been positive. I guess now we need to spend another million dollars getting our home inspected. Although, I have a feeling, just like my ultrasound, MRI and CT scan, that they will find nothing. I probably was exposed years ago or it’s from my overindulgence in oats and nuts or it’s from lying in my garden this summer or we’ll never know. Of course.

* Annnnd….. then my 23andMe came back today… and I don’t have the MTHFR mutation. Dr. B was wrong. I am much more likely than the average person to have rheumatoid arthritis, but I don’t have the mutation that we assumed I had, that my doctor said I had, and that my husband and I have been feverishly researching for the last three months… I know I’m not meant to say it, E., but FML. It was the only treatment for which we had a glimmer of hope. My husband has been cheering me on the last few months: “Hold on! When we get your 23andMe results, we can start a methylation protocol and I really feel this will be the turning point!” Bless him, he is a natural optimist and I just stare at him blankly, try to muster a smile of hope…

Fear not, readers, I am a mutant in other respects and I will hunt down info about the homo/heterozygous SNPs that I do have.

Until next time, I will be shopping the internet for a caravan that is old enough that its interior won’t off-gas noxious fumes, new enough that it isn’t dusty and moldy, big enough that it can house my husband and dogs (in a separate room), modern enough that it can power a large freezer for my low-histamine meals, and comes with an unending fresh water supply, a built-in air filtration system, lots of windows so I can look outside, lots of black-out blinds so I can sleep, has a very comfortable bed, is sound-proof, weather-proof, never gets too hot or too cold, has five million dollars stashed in the floor boards, parked in the dessert, next to a hospital and a Whole Foods, like a pig in a cage on antibiotics…

Now excuse me, I must make haste. The SAG Awards are on and I’m hoping to watch them sitting up, while ingesting food and not collapsing.