Doctor Love/Hate

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

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

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

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

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

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

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

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Yes, I’ve used steroids.

Every time I try a new drug, I first get ready for the hospital. I have lived under the specter of anaphylaxis for 13 years and, in the last 2 years, the knowledge that many drugs – even ones I have taken often – can crush my lungs and shut down my airways. There’s also the fact that my autoimmune urticaria and angioedema manifests itself as tongue swelling. My allergist said, “Some people get hives, some people get puffy faces, unfortunately for you, your tongue swells and that can be life threatening.”

So, today, before spraying a new powdered corticosteroid up my nose, I ate something, drank a lot of water, locked the back door, made sure the dogs were inside, took off my pjs and put on black yoga pants and a sweatshirt (this is “dressed” in my world). I also put my phone by my purse and made sure my husband was reachable.

But let me back up. I saw an ENT doctor on Tuesday. I made an appointment on Monday with the only doctor near my house that had an opening. I really liked his bio on the hospital website, too, and I wasn’t disappointed – he was very nice and thorough. I drove myself, which was fine, but his office was down a very long hall and I was once again confronted with how hard it is to navigate the world as a disabled person. I walked that hall, but what if I couldn’t? What if eventually I can’t? You need a strong, able-bodied caregiver, a wheelchair and much more time.

I haven’t been using my CPAP for about a month (which wreaks havoc on my sleep and health) because my sinuses have been too swollen. A few weeks ago, I decided to try irrigating them with a saline solution, since everyone swears by this (I used the squeeze bottle instead of the neti pot). I felt water in my ears and it came out my mouth and eye (seriously!), as well as the other nostril. It was thoroughly unpleasant, but I persevered twice more – until the water in my ears was bad enough to stop my insisting it was healthy. Over the next week it grew more and more uncomfortable and I was forced to make the appointment after pain radiated into my eye socket and cheek and jaw bones.

The ENT doctor looked in my ears (no infection) and rummaged in my mouth and pressed on my jaw (TMJ problems, which I knew) and asked if he could spray a decongestant plus lidocaine in my nose. I explained my sensitivity to drugs and asked him if the outcome would change his course of treatment and he said probably not, but he’d like to scope my sinuses. I told him, Bring it on! We don’t need no stinkin’ lidocaine! One side was easy, the other was much more swollen and his wee camera had a tough time getting around the corners. At one point, I thought he might puncture my eyeball. That wasn’t too fun.

He offered a five day course of prednisone, which I declined and he offered to inject my sinuses with steroid, which I declined. He said the swelling seems to be allergy-related and said I should try different steroid sprays until I find one that doesn’t give me migraines and, if none of them worked, we could consider other options. So, off I went with 4 samples to research and worry about. I eliminated the steroid + antihistamine because there seemed to be a tendency to lose one’s sense of taste, I eliminated the spray with the highest incidence of headaches in the clinical trials and my final pick was based on user reviews. Of course steroid warnings are scary for someone like me: you can catch things easier because your immune system is suppressed; don’t take if you have adrenal insufficiency; it can make viral/bacterial/parasitic/fungal infections worse; tell your doctor if you’ve never had chicken pox or measles (I’ve had neither)… And then, of course, it can cause nose bleeds, holes in the septum, headaches, allergic reactions and anaphylaxis. Joy.

A few minutes ago, I sprayed Zetonna up my nose. Because it is a metered spray, I can’t try a small dose like I normally would. I use what the rest of the population uses: one spray up each nostril, once a day. At least with my antihistamine nasal spray, I only took one spray once a day when the adult dose was two sprays twice a day. So, I wait and hope that I have no instant hives or swelling, no trouble breathing in an hour or two, no rash tomorrow, no migraine in a week, and no virus or bronchitis in the months to come. Oh, and that it actually works and the swelling goes down and I can sleep and breathe properly again. Wish me luck.

Gratitude for the day: I got to see my big brother yesterday, who was here on a layover (he’s a pilot). I was shaky, hoarse, headachy, exhausted and couldn’t do much but recline on the couch while we visited for a few hours, but that was enough to raise my spirits and calm down my crazy, agitated, insomniac nervous system. Love you, bro!!

I Scream, You Scream

What has the power to make me expend energy writing a blog post? You guessed it: ice cream!

I’m having a very hard time quitting my sweet habit. I don’t eat a lot of desserts and I can live without processed sugar, but I seem to need that little bite of sweetness after meals to seal the deal. Small bites of ice cream and chocolate have always been my go-to desserts.

All store-bought, non-dairy ice creams have carageenan, guar gum, erythritol, and “natural flavors” or soy lecithin or a lot of sugar. Although I don’t eat these a lot, I’ve felt frustrated at my inability to eliminate this habit when I have so easily and strictly stopped eating all the other food groups my doctor has specified. Bring in this $34 (when I bought it) ice cream maker on Amazon Prime. It was too daunting for me to tackle, but my husband made it look easy and I’ve had fresh, creamy, healthier ice cream for the last few weeks.

Here’s the basic info: coconut milk + sweetener + flavour = YUM

The coconut milk should be the full-fat canned kind. This is the only brand I found with no guar gum in it. The sweetener can be dates (make amazing “caramel”) or bananas or honey or coconut sugar (resembles brown sugar and my doctor has okayed it!). The flavour can be anything you can dream up ~ nuts, fruit, extracts etc.

So far I have made Caramel Pecan, using this recipe from My Whole Food Life (it was far too sweet for me with 2 tbs of honey in addition to the dates, so be careful) and Pistachio-Almond, using Food Babe’s recipe, but, beware: I used 1/2 cup of pistachios and there were too many nuts and not enough creaminess. Also, don’t use salted pistachios ~ duh! I have the ingredients for the mint chocolate chip (even though the Enjoy Life chips are made from cane juice and I’m not allowed to have it on my current diet) and I have some huckleberries with which I want to experiment. The Spunky Coconut has a lot of recipes, too. She uses hemp and chia seeds which help take the place of the “gums”. There are some other creative flavour ideas here.

Before you get started, make sure you have all the ingredients needed, plus ice and salt for the ice cream making process (there is a product called “ice cream salt“, but I think you can use regular salt, too). Don’t believe the recipe if it says you need to freeze the ice cream maker bowl first or refrigerate the tin of coconut milk overnight- you don’t.

Ok, my half hour is up and I have to go to an ENT doctor appointment for my sinus issues, which are stopping me from wearing my cpap, and what might be an ear infection from trying to be “healthy” and use nasal irrigation. Another purchase wasted. Down with neti pots!

I was going to go back and spend more time making this a fancy two-scoop photo, but I couldn't be arsed. You get the gist. ;)

I was going to go back and spend more time making this a fancy two-scoop photo, but I couldn’t be arsed. You get the gist. 😉