End of Year On a High.

I have to memorialise what happened yesterday because I am astounded and grateful and I bitch so much about the healthcare in this country making so many of us go broke, but this was truly amazing.

On Monday, December 30th, for the hell of it (and prompted by something my friend, Rachel, posted), I decided to ask my brand new doctor (who doesn’t even know me; I was just dumped on her plate when my phenomenal primary care provider left the clinic) if there was any chance we could squeeze in an MRI before the end of the year because I had met my insurance’s out-of-pocket maximum expenditure for 2019 (meaning, in theory, I wouldn’t have to pay for anything else — and wouldn’t it be nice to get the MRI that one of my specialists requested for free?).

Astonishingly, she answered me the same day and said she had put in the order for the MRI, but she doubted it could happen because it needs a prior authorisation (PA) from insurance and that usually takes 8 days or more. I never expected her to read the message during this very busy time of the year, let alone answer it, let alone put in an order without seeing me in person. I was shocked — she trusted what I said in my email! Maybe I should stay with this doctor, after all.

So, yesterday, the LAST DAY OF THE YEAR, at 7:30am, I call my insurance to ask how long it would take to get the PA. They say to call another company, AIM.

I call AIM and they say the PA can only be expedited if the order is marked urgent and mine isn’t (and it definitely doesn’t warrant an urgent request, so I’m not going to pursue that). But they tell me there is a way to get it approved immediately — if the doctor calls them and answers questions over the phone.

I email my doctor to tell her this, making it clear that I understand she probably won’t see the email and wouldn’t have time to call AIM, regardless.

Then I call radiology to see if I can grab a same day appointment, just in case. Radiology Ryan tells me they have one opening left, but I can’t have it unless they have a PA in place.

Then my doctor’s medical assistant emails to say she can’t get a PA without my having an MRI appointment. Well, that’s a catch 22. And she needs a CPT code.

Meanwhile, throughout all of this, I am going to two big doctor appointments — end of year endocrinology and a 2-hour allergy testing for anesthetic agents — sending emails and making calls in between talking to doctors.

As soon as I’m back in the car, around 11:30am, I call Radiology Ryan and tell him my conundrum — that I need an appointment to get a PA. He says their rule only excludes same day appointments, so I can make one for the future just to secure the PA and, if it comes through, call back to reschedule for today. If the spot is still available. Ryan gives me a random January appointment, but tells me the doctor should provide the CPT code. Then, hearing my whimpering, he takes pity and looks up the code for a “lumbar MRI without contrast.”

I email the MA, tell her the code and my appointment date, and cross my fingers.

Soon after I get home, there’s a message from the MA saying she called AIM and got the PA. It’s a miracle!

I call Radiology Ryan. It’s now 1:30pm. He looks for the PA in his system, sees everything is in place, and tells me there’s still a 1:45pm MRI opening. And it’s on a 3T machine, which is what I need. Another miracle!

I shove some food in my face and dash over to the third hospital of the day, which is only 5 minutes away.

The woman behind the desk tells me I have beautiful eyes and my day just couldn’t get much better.

I fall asleep in the MRI (even a few minutes can help!) and then walk over to the medical records office and get copies of my imaging within 15 minutes.

All in all, it was 26.5 hours between my doctor’s MRI order and having my imaging discs in hand.

Mind blown. All of the people who contributed to getting this done deserve wine and chocolates, including the eye flatterer.

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Also, after being completely debilitated by head, neck and eye pain for three days, yesterday it completely eased up.

Also, it was a beautiful 7:40am drive downtown, a time that I’m rarely out of bed.

 

Also, my thyroid levels are dialed in.

Also, all of the skin prick and intradermal tests for medications were negative.

Also, I walked around the hospital by myself for the first time since I used to volunteer there 12 years ago. My husband usually pushes me in a wheelchair.

Also, we stopped briefly at a grocery store and I walked around like no big deal.

Also, the grocery store had tons of good salads in the deli, so I didn’t have to cook.

Also, I succeeded again in inserting my peripheral IV in a hard-to-access forearm vein and it is so much better to be able to move normally throughout the day without worrying about kinking something in the elbow or wrist.

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Also, although Penn kept me up most of the night with her fireworks panic, Riley has decided that he’s too old to give a shit and one terrified dog is definitely easier to deal with than two.

Also, I had the best Christmas health-wise since before I was sick. <– This last point is so exciting, it will get its own blog post.

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Happy new year, everyone!

UPDATED Emergency and Surgery Protocol for MCAS and ME

The links at the bottom of this page are for my protocols that were updated March 29th, 2020. My protocols are for me and my doctors. I am not a health professional and I recommend you do not use any of my advice or guidelines without consulting your doctor. *See full disclaimer below.* My protocol is an accumulation of months of research into precautions that should be considered by people with mast cell disorders (MCAD) and myalgic encephalomyelitis (ME/cfs), as well as some guidelines for patients with Ehlers-Danlos syndrome (EDS) and craniocervical instability (CCI). It includes information and materials from ME websites, such as me-pedia.org, mast cell resources, such as tmsforacure.org, my doctors and specialist, as well as other patients.

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I started writing an emergency protocol back in 2015 when my mast cell reactions were scaring me with their unpredictability. I wanted something comprehensive, in writing, for anesthesia teams in the case of a planned surgery, but also something that my husband could hand to paramedics or emergency room doctors, if I couldn’t speak for myself. It was a massive undertaking because I tracked down every link and reference I could find about medication and surgery precautions for patients with mast cell diseases and ME. I wanted to gather all the information that was pertinent to me — my particular case — and edit it down to something manageable. I put together something passable and then moved it to the back burner for the last 4 years.

Last week I saw a new GI doctor who was emphatic that I get a colonoscopy and endoscopy at the same time and with anesthesia. I have been completely enema-dependent for years and, honestly, it’s exhausting. My previous GI doctor told me it was due to anatomical abnormalities (an MRI found pelvic floor dysfunction with cystocele, rectocele, sigmoidocele) and that I’d likely need enemas for the rest of my life, but it feels like the issues are getting worse and the new doctor didn’t want to throw medications at the problem without knowing exactly what she’s dealing with.

I cannot imagine voluntarily going under anesthesia. All of my worst reactions in the past 7 years have been to medications and my fear of trying new ones — especially intravenous medications — is so pronounced that I vowed only to agree to anesthesia if I was in a life-threatening situation (or couldn’t speak for myself). How could I be lying on a gurney with a peripheral IV, knowing they are about to inject multiple anesthetic drugs and not jump up and run out of the room? I wouldn’t be able to advocate for myself… I could die for a colonoscopy! So, I left the appointment with a sense of doom that only deepened when I started to feel a new ache in my lower abdomen. It got progressively worse over 3 days, the ache turned to pain and, what I thought of as run-of-the-mill bowel inflammation started to seem like something else. Gallstones? Bladder infection? I got out my emergency protocol notes and spent about 20 hours over the next few days rewriting everything, feeling like I might be working against the clock if this was something like appendicitis. Then I woke up last Sunday to such severe lower abdominal pain that I couldn’t move, could barely breathe or speak. I was shaking all over, in a cold sweat, nauseous and felt like I was on the brink of passing out. My husband wanted to call an ambulance, but I said no, hoping it was some sort of spasm that would pass. And it did… but not entirely. The ache and twinging remained for a few more days. It’s gone now and I think it was my dastardly bowels, after all, but it was bad and it scared me. It’s like the gods heard me say, “no way am I getting a colonoscopy” and decided to stab and twist their Elizabeth voodoo doll to make sure I got the point that there’s a problem I can’t continue to ignore.

The upshot of all this is, I finished the emergency protocol and I wanted to share it here, in case it could be useful to anyone else. There are a few important points about it, though:

  1. When I started, it was for personal use and I didn’t keep track of references. I will go back and gather all the links and add them to this article, but I have no idea how long it will take me and I wanted to share this sooner, rather than later. If you see your own information here without credit, please understand I will add a link to your article/blog/website! Please feel free to leave a comment.
  2. This protocol concentrates heavily on mast cell precautions because MCAS has caused my life-threatening reactions such as anaphylaxis and profound hypotension. It does not mention ME or CFS, although I researched and included ME resources, such as Dr. Lapp’s recommendations (Appendix E of the Primer for Clinical Practicioners) and Dr. Cheney’s anesthesia letter.
  3. I have an EDS diagnosis (Ehlers-Danlos Syndrome — a connective tissue disorder), which can cause serious surgical complications. There are a lot of guidelines out there for EDS patients and I have only researched some of them. It wasn’t until recently that I started to take this diagnosis more seriously and I still haven’t had the gumption to jump deeply down the research rabbit hole, but, once I do, I will be updating my surgery protocol with any additional EDS precautions that are pertinent to my situation.
  4. It bears repeating: This is not medical advice of any kind. This is my personal protocol, for my personal situation. You may be more or less reactive than I am, you may have normal or high blood pressure or you may be far more disabled and need many more accommodations… But, I hope it can be of use as a jumping-off point. Please consult with your doctor.
  5. The links below are printable pdf files, which are formatted properly, but if you need any of them in a different format so that you can copy and paste certain parts into your own protocol, don’t hesitate to leave a comment or email me at akaemilo@gmail.com, and I will send you a Word doc or Google doc version.

 

Click here for the long version of the protocol, geared towards the patient: Elizabeth Milo Full-Length Emergency and Surgery Protocol

Click here for 1.5-page short version of the protocol, geared towards doctors: Elizabeth Milo Abbreviated Emergency and Surgery Protocol

Click here for anaphylaxis protocol: Elizabeth Milo MEDICAL EMERGENCY RESPONSE PLAN for Mast Cell Activation and Anaphylaxis

Click here for my personal medication chart, based on an original from The Mastocytosis Society: Elizabeth Milo Safe Medication Guidelines

 

Here is The Mastocytosis Society Emergency Room Protocol.

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*HEALTH DISCLAIMER*

This blog is my own personal journey. The information and other content provided in this blog, or in any linked materials should not be construed as medical advice, nor are they intended to replace a one-on-one relationship with a qualified health care professional. NO information on this site should be used to diagnose, treat, prevent or cure any disease or condition.

If you or any other person has a medical concern, you should consult with your health care provider or seek other professional medical treatment. Never disregard professional medical advice or delay in seeking it because of something you have read on this blog or in any linked materials. If you think you may have a medical emergency, call your doctor or emergency services immediately.

Finally Starting IgG Infusions.

After 13 months of buildup, I’m finally scheduled for my first IgG infusion. Dr. Chia recommended I get IVIG (intravenous immunoglobulin) in August, 2014. When I came back to Seattle, I asked my GP about it and she said my total IgG wasn’t low enough (allopathic guidelines say total IgG < 400mg/dL) to warrant therapy. I asked my rheumatologist about it and he said because I have no evidence of persistent infections, I’d have to get an antibody vaccine provocation. I’m sure there’s a name for this, but, essentially, you are given a vaccine and then they look for an appropriate rise in antibody titers to that vaccine. If your body doesn’t mount a response, they can approve IVIG. Well, of course, I’m never getting a vaccination again, so that’s out of the question. I asked my main ND, Dr. W, and she said she didn’t have the ability to order it, but suggested oral IgG, which I never started because… another supplement, ugh. So, I’d given up on it when I went to a new ND, Dr. I, and I didn’t even think to mention it. After reviewing all my labs, the first thing she recommended was IVIG and, just like that, she got it approved. But… not so fast. That was 10 months ago and there was a lot of work to be done.

(As an aside, I do wonder if I’ve had low immunoglobulins my whole life and nobody looked into it. Or maybe it waxed and waned. I had chronic bronchitis, pneumonia and asthma as a child and, as an adult, got a chest infection pretty much once a year–probably more when I was smoking–but never thought this was unusual. Here’s a short article about one girl’s SCIG from infancy. It has some photos of infusions.)

Before trying IVIG, we decided I should try SCIG (sub-cutaneous IgG) because there are fewer side effects for most people. Before SCIG, I needed to test out the medications necessary to stave off anaphylaxis, aseptic meningitis, migraines and a host of other issues that can develop. Before testing the pre-meds, I had to make sure I could handle IV saline infusions since the last one I had caused a leaky anaphylactoid reaction. Before trying IV fluids, she wanted me to be on bioidentical progesterone, pregnenolone and DHEA, not only because my hormones are low, but also because there is evidence that hormone therapy can calm reactivity. And all of this has to be danced around my menstrual cycle because I’m somewhat reactive during ovulation and extremely reactive during my period. We also had to wait for me to get my nerve up because so much of this is dependent on my comfort level and, when anaphylaxis could be involved, I’m never comfortable.

I have friends in mast cell groups who “anaphylax” often, repeatedly, sometimes daily. I can’t imagine this. There are different levels of anaphylaxis, so I suppose these could be lower level reactions, but my episodes of anaphylaxis were full-blown and very scary, mostly because of the difficulty breathing. I really thought I would die and I probably have some PTSD from those experiences. No amount of sickness scares me as much as having a sudden anaphylactic reaction that kills me. I don’t want to get meningitis or be saddled with chronic migraines like my friend Jackie, but those are not at the top of my list of fears.

Having said that, I pay attention to comments like this since I, too, once had a CSF leak from a lumbar puncture and it was the 10 on my pain scale to which I now compare everything else. IVIG can mess you up:

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(FYI, I found this website with tons of allergy information and graphics that might be interesting.)

So, I’ve been on topical, compounded hormones for almost a year and they haven’t raised my serum levels much, but I think they’ve helped with sleep (they also cause greasy skin and hair, like I’m going through puberty, but I’m willing to put up with that). At the beginning of this year, I was reeling from the terrible nocturnal reactions and tongue swelling I had been having, so I wasn’t willing to try anything new. Finally, in May, I got around to testing a tiny bag of IV saline (it went fine, although the whole appointment and clinic visit was a total shitshow which lead me to write two long emails to my doctor. I came very close to not going back, but I really want this treatment). Then in July, I had a full liter infused over 6 hours (a very long time for 2 bags of saline). Everything went fine, no problems (but no boost in blood pressure or energy, either), which meant it was time to schedule SCIG, but, once I started researching in earnest, I realised that there were so many questions I needed answered.

IVIG is often done in a hospital setting if the person is high-risk. I would prefer to have more than just a nurse present if I went into shock (and, by all accounts, nurses’ competency levels are highly variable). My doctor didn’t know how to get this done because the company with which she works does home infusions; she recommended I ask one of my MDs for help. More time ticked by while I emailed my GP (who has only met me once), my endocrinologist and my rheumatologist (both of whom have only met me a few times) for help with this. They all said no. I talked to the infusion company (who have been incredibly helpful thus far) and they offered to do it in their “infusion suite”, but there are no doctors present and their protocol is to call 911 if there is an emergency. Well, I live a few minutes from a fire house and an emergency room, so home seems just as safe as the infusion suite, if not more so since my husband, who is far-too-intimately acquainted with my history, can be there.

Scrolling through Facebook groups, I realise I have to learn how many injection sites I’ll have and whether to use my belly or thighs and the needle size and how many ml you can put in any one area and leakage, hardness, weals etc. etc. My good friend, who is braving his way through gruelling IVIG treatment, has been giving me advice every step of the way, which is invaluable when your doctor doesn’t tell you exactly what the process is or the importance of hydrating or the effects of IgA.

Different brands of IgG have varying amounts of IgA in them. In general, lower IgA equals fewer reactions and, if blood tests show that you have very low IgA or anti-IgA antibodies, you will qualify for the IgA-depleted IgG brands. Isn’t this something my doctor should have mentioned? She wrote the prescription for Gamunex and I asked her if she would consider Gammagard or Hyqvia, both of which have lower IgA. but she said it wasn’t necessary. And she may be right, but wouldn’t you want to use every tool available to keep your highly-reactive patient as safe as possible? My IgA has been slightly low in the past, so, right before I was meant to schedule my first infusion, I asked my doctor, “Can you test me to see if I have anti-IgA antibodies?” and she said yes. Doesn’t this seem like something that should have been done originally without my asking, considering my history?? Maddening.

The IgA test was meant to take a week to come back and I didn’t get the results for 3 weeks, so here we are in September. One of the IgA subclasses was low out of range, but I didn’t have anti-IgA antibodies, so I couldn’t really make a case for changing from Gamunex. And I wanted to do it as soon as possible rather than wait until after my next period, which would put us in October, so I scheduled it for this coming Tuesday.

My doctor wants me to take 2 Tylenol (Paracetamol), 2 Benadryl and 3mg of Prednisone (Prednisolone) before my treatment. I needed to test these premeds because last year when I took Prednisone, I worked up very slowly to 3mg, I only ever take 1 Tylenol at a time and I have been VERY sensitive to Benadryl since having M.E.–plus I’ve never taken the combo. I realised my EpiPens were expired and so were my two boxes of Benadryl and my emergency Prednisone. It took more waiting time for new prescriptions to be called in and finding a good day for my husband to pick them up. When he did, I realised they had given me 10mg pills of Prednisone rather than 1mg (always carefully inspect your pills!) and he had to go back to the pharmacy for a fourth time in a week. Poor guy.

Last week I tried 1 Tylenol, 1 Benadryl and 1.5mg of Prednisone (using my expired stash). About half an hour later, I got a tight chest. Not enough to scare me, but enough to put me off trying more Benadryl. Then I got very shaky and drowsy and had low blood pressure. After I slept for about an hour, I was incredibly thirsty and hungry and then, about 4 hours after taking them, I felt better than I have in a while and was chatty and good-humoured. Success.

Last night I tried again, this time with 2 Tylenol, 1 Benadryl and 3mg of (fresh) Prednisone. I couldn’t bring myself to take 2 Benadryl. The good news is, I didn’t get the tight chest and shakes this time, I just fell asleep for an hour. The bad news is, I didn’t feel good afterwards at all. I had a headache, my eyes and lips felt swollen, I was completely parched and felt really out of it and hungover. But, this is HUGE for me. It is so incredibly exciting to take a bunch of medications and come out unscathed. I’ve been wanting to test this for ages so I have some confidence that, if I’m given IV Benadryl and/or steroids in the event of an emergency, I’ll be okay.

A few final hurdles: I’m scrambling to get two blood draws on Monday before starting SCIG. Dr. W has been trying to get me to do regular “hydrotherapy” for a year and a half. It’s basically hot and cold towels over my torso and back, coupled with electrical stimulation (instructions for doing it at home can be found here). I never wanted to expend the energy until she told me about a patient of hers with hypogammaglobulinemia whose IgG levels came into the normal range after 6 weeks of hydro constitutionals. She was willing to test my total IgG before and after if I did this experiment. I love quantifiable evidence! So I started in August and, even though it’s only been 5 weeks, I want to get my levels tested again before starting SCIG.

The second thing is a babesia test. I’ve been asking my ND about this since June–in person during appointments, in email to her and also to her assistant, who keeps saying she has to get the doctor to sign the form–and can’t seem to get anywhere. They say yes, but it never happens. How hard could it be to sign a requisition form?? Her last message to me said I could get my blood drawn if I make another follow-up appointment. Are you kidding me? That seems downright cruel when we’ve discussed this at my last 3 appointments and she only works two days a week. I talked to the director of Igenex, the lab that does the testing, and he said I should definitely get it done before SCIG, so I finally just ordered the test kit myself and I’m going to bring it to my other doctor, Dr. W, on Monday and beg her to do the blood draw along with the total IgG. I don’t understand why everything has to be such a battle. It’s exhausting and infuriating.

I’m trying to not be annoyed at the difficult communication with my SCIG doctor because, not only is she the only one getting me this treatment, but she was willing to start me at 1 gram the first week (unheard of), building up to 5 grams over 5 weeks. She was also willing to prescribe saline infusions along with the treatment. Only 500ml each time, but every little bit of hydration helps mitigate side effects. I’m deeply grateful to have someone willing to do that when an immunologist wouldn’t even have a conversation about it.

Wish me luck. I’m going to receive all the supplies by courier on Monday and then Tuesday afternoon a nurse will come over, start the drip and show me how to do the sub-cutaneous injections. I believe after that, I’m on my own. Or, maybe because I’m getting IV fluids each week, a nurse will have to come, I don’t know. I will take Zyrtec and hydrate like mad the days before and after… But, friends and family, I am very scared. Even though it’s SCIG and not IVIG and even though I’m starting at a laughably low dose, I’m still scared. I will eat fairly low-histamine in the next few days and do my breathing exercises and meditations before, during and after treatment, but still… I want this to be the beginning not the end. Are my affairs in order? Do you all know how much I love you? Remember: when I first got sick and thought I was dying, I wrote down directives and requests. Husband, remember: the notebook in my bedside table.

Now everyone knock on wood for me and spit over your shoulders. Toba toba.

Oh, Christmas Tree. Oh, Christmas Tree…

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

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

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

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

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

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

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

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

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

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

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

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

DIETS Part III: finding a balance in low-histamine and figuring out how to eat more meat.

Some of you have commented on how exhausting/frustrating/crazy this elimination diet process is and I agree! It is incredibly time-consuming considering the research into studies, the searching for recipes, the phone calls to grocery stores, the time my husband spends shopping, menu discussion, and cooking time…! Since none of my diet changes has made me feel any different, it seems like a futile process, but here is what I always keep in mind:

Some people, such as my brother, eat a paleo diet even though they are completely healthy ~ they just want to continue to feel great. Or feel even greater. Some people are diagnosed with a thyroid condition or an autoimmune illness and immediately change the way they eat, trying to ease symptoms or stop the progression of disease. I never even considered doing these things! I had one odd health issue after another and never changed a smidge about the way I eat. The doctors didn’t mention diet, so I didn’t think about it. I didn’t even research the things I was experiencing. This blows my mind more than anything. My time was fully committed to my job, there was no room for anything else. Plus, they were intermittent episodes (I thought) and I was still feeling fine (I thought), so everything was easy to ignore. I had given up alcohol, which, to me, was the ultimate sacrifice ~ do you think I would give up anything else? No way!

One of the best gifts I was given was my OBGYN off-handedly saying, “You should eat some salt if you feel like you are going to collapse.” Uuuuhhh…? Why didn’t I know that? I’d been limiting my salt for years because I thought it contributed to the swelling. Couldn’t just one of the many nurses that have taken my blood pressure over the years mentioned salt to me? They always comment on how low it is and I always let them know I get dizzy. “Try increasing salt.” Just that simple.

The other thing I always keep in mind is my dog, Bowie. When he was young, he developed bumps on his skin. The vet thought it might be a food allergy, so we changed him to a limited-ingredient diet. Over the next year -maybe two- his skin got worse and worse. We changed his shampoo, we washed him more, we washed him less, we gave him supplements, he was put on Benadryl. His coat is a beautiful, deep, glossy brown; he looks like a stallion. But the bumps got bigger, his skin was like braille, and his skin started to have a distinctive infected smell.

Then, one day in the dog park, there was a hand-written sign tacked to a post: “Natural Balance food is killing dogs!” It had some other info on the sign that I can’t remember, but there was nothing online that we could find. Regardless, we paid attention because that’s the brand our dogs ate. And then a miracle: Literally, a few days after we switched their food, we had two puppies back in our house. We didn’t even realise that their happiness and activity level wasn’t normal for them because that’s all we knew for so long. They were DANCING. They were LAUGHING. They were running around like we had just removed their shackles. And then Bowie’s skin made a total turnaround: The bumps and smell disappeared incredibly quickly. We were very grateful, but my heart was broken over the poison we had been feeding them. If anyone had witnessed the change, they would know the radical difference food can make to health.

Lastly, I never want to look back and regret not trying diet changes. One would think that time ticks by slowly when you are sick and housebound, but, it turns out, the years speed by quicker than ever. I don’t want to be 50 or 60 and wish I had tried this in the beginning of my illness.

So, after 3 weeks of eating sort of low-histamine and a month of eating strictly low-histamine, I was not feeling any better. In fact, November and December were probably the worst months I’ve ever had, but I blamed that mostly on repercussions from the tilt table test and IV fluids reaction. I’m sure the stress around a new way of eating and hypoglycemia didn’t help matters, though, so I allowed in some histamine foods (bananas, berries, lemon, some vinegar, all greens, all meat), but I have continued to avoid the biggies (fish, spinach, tomatoes, eggplant, pickled/fermented foods, dried fruit, leftover animal protein). I needed to increase my protein intake to stabilise my blood sugar and started force-feeding myself meat. It was joyless, like taking medication. I am eating this chicken so my blood sugar does not tank in the night… (picture me sitting in bed, eyes closed, slack-jawed chewing a piece of cold, dry meat, grimacing as I swallow).

Around the same time, I eliminated oats ~ the only grain I had never lived without and had, in fact, been eating every day in the form of granola/porridge and oat crackers ~ and that left me desperate for breakfast options that included protein. Beef breakfast patties became a staple. We started investigating all the butchers in our area and my husband talked to all the grocery stores. We figured out when deliveries come in, whether they are fresh or frozen, how long since the date of slaughter, and we buy grass-fed, pastured beef and lamb, organic chicken and turkey, trying to source the healthiest and freshest meat to continue keeping histamine in check. My husband cooks the day we buy meat and then we freeze portions so I have meals at the ready. He still makes beef bone broth and chicken stock, but we cook it in a shorter amount of time and freeze it in silicone ice cube trays and jars. Beef patties for breakfast. Lamb shepard’s pie, portions wrapped in wax paper. Chicken and turkey breasts that can be thrown in soup or chopped on a salad or served with rice pasta and topped with veg and sauce (see FOOD! page for some recipes). Blood sugar crashes became much rarer.

Frozen broth

Frozen broth

My weird breakfast:
Grass-fed beef patty with parsley (antihistamine) and thyme (anti-bacterial, anti-inflammatory, antihistamine);
artichokes (contain quercetin, luteolin and rutin);
sweet potato (anti-inflammatory, contains rutin and quercetin) and butternut squash latke (antihistamine, anti-ulcer, anti-inflammatory and antidepressant action);
pomegranate (mast cell stabiliser, anti-inflammatory).
**Info from thelowhistaminechef.com**

Another weird breakfast:
Grass-fed beef patty with parsley (antihistamine) and thyme (anti-bacterial, anti-inflammatory, antihistamine);
sauteed with spiralized zucchini (has anti-inflammatory, anti-ulcerogenic and potentially antihistaminic properties);
cauliflower (contains anti-inflammatory vitamin K) and sweet potato cake (anti-inflammatory, contains rutin and quercetin);
apple sauce.
**Info from thelowhistaminechef.com**

I started to feel a bit better overall in late January, right after my bad pre-syncope episode during my period and right after I quit oats. By “better”, I mean back to where I was around September/October of last year. Able to walk 800-1000 steps a day instead of 500, my daily headache got better. But still not going into the garden, not stretching, not able to talk very much. One amazing change is my heart rate has gotten much lower overall ~ almost too low. In the 70s and 80s when I am standing up, not moving. Mid-50s sitting, watching tv. Low-50s and high-40s sometimes, while lying down in bed.

I refuse to believe that eliminating oats made the change.
A) Because I love oats too much and can’t wait to eat them again. I HATE savoury breakfasts. Hate them. Make me sick and nauseous. I was the one going to the Irish pub for a Sunday fry with my family and ordering porridge or fruit, yogurt and toast. Every morning is a struggle. It has gotten easier, but it’s not enjoyable. I don’t want acorn squash and beef and kale for breakfast and I never, ever will. It’s one of the reasons I have continued to search for “baked goods” recipes and kept rice in my diet (so I can have rice cereal or rice toast, if I like).
B) Because nothing can ever be definitive in such a changeable, cyclical disease. I also stopped taking my B-complex around the same time. That could have been causing my headache everyday!

Banana-Zucchini muffins: click image for recipe

Banana-Zucchini muffins: click image for recipe

In the final diet post, I will discuss AIP (autoimmune paleo diet) and all the other complications and sensitivities one comes across when researching online. It’s enough to send anyone straight to the nearest fully gluten-ized and dairy-fied bakery.