Chasing the chocolate dragon

All my prayers and love to my friends in Texas, particularly Houston, and my friends in Florida, those who have evacuated and those who are now picking up the pieces.

***

This is more of a personal update.

I posted on facebook last Saturday that I’d landed in the ER after a half-shift of work. I thought I was good to go to work – MISTAAAAAAKE! (opera singer). I managed to make things a lot worse for myself by attempting to “push through”.

In some way, I wish I was “push through it” sort of person. I certainly have the mindset and the willpower to work through pain. The problem is, when I ignore pain for too long, it does one of two things: it makes me puke, or it makes me pass out. Saturday, I was feeling dizzy. I was concerned that I was having a blood pressure, or even anaemia issue related to my ongoing uterus issues (still waiting for a hysterectomy date!) Fortunately, I was fine. “Fine” as in, nothing wrong with me other than me being in pain. I felt better after laying down for a couple of hours, no longer dizzy.

I did get screened for an ectopic pregnancy – LOL! My nurse friend assured the doctor that it was *highly* unlikely I was pregnant. “Well, you never know!” replied the doctor! You do see all sorts of things in the medical field, but there would have to be something SERIOUSLY wrong if I was pregnant. I’d have to be sleep-banging the neighbour! When the nurse poked his head back into my cubicle and announced the test was negative, we both had a chuckle.

I will be getting a six-week heads up for my surgery date, so as of today, it’s still at least seven weeks out. One more cycle, at least – maybe two, to get through. I’ve been taking curcumin to control inflammation, and it’s helped. I’m going to ask my physician about CBD oil with THC to help with pain control next cycle. I have tried as best I can to stick to the endo diet, but I’m finding that very challenging to maintain, honestly. Ugh. It will be very interesting to see what comes up after my hysterectomy. If I DO have endometriosis, it’ll be diagnosed during surgery. It will be so good to have that information. I do have the worse flare-ups around my cycle, but my bladder pain seems to have subsided quite a bit! This is GREAT news! I think the curcumin plus the diet modifications have helped a lot with that, although I have not been as physically active this year as I would have liked, because long walks or hikes tend to set off a flare that could last a week. It’s better to gradually increase physical activity, rather than have a big long walk a couple of times per week – but the problem is I have a set back every cycle. The hope is that the hysterectomy will stop the set-backs, and I’ll be able to go on a steady healing incline. Apparently endometriosis and interstitial cystitis tend to show up together, which makes me wonder if my bladder issues were more a result of chronic inflammation.

It’s possible whatever undiagnosed issue with my bladder has healed over the past year. Maybe the curcumin and the diet is either keeping the issue at bay or has helped to heal it. Perhaps all the therapy and somatic experiencing techniques have been working to help re-program the way my brain processes pain. It’s most likely a combination of everything, and it will take time.

I have become fascinated with pain theory. Once pain has gone on for a few months, and they can’t find any actual tissue damage, you’re categorized as “chronic pain”. People with chronic pain can have acute flare-ups, but the way chronic and acute pain is treated is different. In my case, and the case of many women who go to their doctors complaining of menstrual pain, the pain is labelled “normal” and you’re sent on home. For me, and many other women, this results in us living for years, or decades, with acute pain flare-ups which progress into chronic pain conditions.

Poor Abraham Lincoln’s wife may have experienced such an affliction. Yet history seems to have pegged her as mentally ill or just a huge bitch. Can you imagine what it would be like to deal with this stuff, without pain medication (well I guess there was laudanum?) without modern appliances, without even sanitary pads? And being followed by paparazzi? Some women experience pelvic pain and hormonal disturbances *every single day of their reproductive lives*. Maybe Mary Todd Lincoln was one of them. That could look a lot like insanity, as the years progress, as pregnancies are lost, anemia becomes chronic, the pain closes in, and the diagnoses are dismissive or worse, threaten to imprison her rather than provide any relief. Thank you “female hysteria”! Sheesh! Yes, I have SO MUCH to be grateful for!

The theory we have for me right now, is that two decades of monthly menstrual-related flare-ups could have resulted in a phenomena called “complex reginal pain syndrome”. So for me, even though the problem has been with my uterus and possibly endometriosis, the nerves could be so overwhelmed by pain signals that the pain sensation is starting to refer to my bladder and surrounding pelvic organs.

That theory would explain my symptoms, and explain why the urologist couldn’t see anything wrong with my bladder. So it’ll be interesting to see if my surgeon finds endometriosis. It would explain a lot.

Another possibility is adenomyosis. I also check all those symptoms. This condition could also result in complex regional pain syndrome. Adenomyosis is basically endometriosis but within the walls of the uterus. It’s typically very painful and curable with a hysterectomy! I’m almost rooting for this one J If there’s endometriosis, then that’s a condition that I will need to continue to manage the rest of my life, or at least until menopause. Heck, I could have both, or something else!

Whatever it is, chronic pain requires pain management that goes beyond medication. The psychological part of dealing with pain is often the most challenging. Many women hang all of their hopes on the surgery as a cure. The thing is, the surgery might not be a cure. I am confident it will help a lot, or else I wouldn’t be doing it! But I’m not going to hang my whole emotional well-being on the hope that it will fix everything. It might not. And I don’t want to be flattened if I’m faced with a worse-case scenario, because frankly, I’d rather focus on counting blessings. What you consider a “blessing” can be relative to what you expect, so I like to manage my expectations to create more opportunities to celebrate.

Surgery doesn’t always fix pain. Only a multi-disciplinary, medical, psychological, and naturopathic / nutritionist, and physiotherapy all combined has been shown to yield good results with chronic pain. Not one of those things alone has been shown to be as effective as all of these things combined.

I’ve been continuing somatic experiencing therapy, which has helped me ENORMOUSLY. I’ve thought a lot about how I can describe this therapy. Cognitive Behavioural therapy is easy to describe – it helps you change your perspective on your situation. It helps you see options you didn’t see, and it helps you make different choices and change habits.

Somatic experiencing therapy helps you use your brain to talk to your nervous system. Remember when I was talking in “the weight of it” about how our bodies help us by taking on experiences that we can’t always handle or process in the moment? Well, I’m hoping that not only will somatic experiencing therapy help me with what I now realize is actually PTSD from a looooooong time ago (don’t worry, I’m doing so much better!) but I am hoping that somatic experiencing therapy will help me process what my body is holding on to, what it doesn’t want to deal with, and why it’s fighting weight loss – even though excess weight could be making endometriosis (if I have that) worse. More fat = more estrogen = worsening endometriosis. I should lose weight. I have been trying for two years.

But chronic pain fights weight loss too. Pain = cortisol = adrenal fatigue + increased estrogen. Increased estrogen = increased endometriosis progression + weight gain, which causes a further increase of estrogen. It’s more complex than that, but that’s the gist of this weight gain cycle. Even without the endometriosis, the estrogen / weight gain cycle is fairly well established in naturopathic and nutritional guiding care principles, there just hasn’t been a lot of formal medical studies yet.

My experience of weight gain has been that I always and only gain weight while under some sort of unusual stress. My current weight resulted from the gain that happened while my mother was sick, and since she passed, I have not been able to lose much. I managed to lose 10 lbs, so that’s something. But it’s not what I have been hoping or trying to lose.

By the way, I am completely OVER feeling bad about my weight. (I’m fabulous!) I am done being hard on myself, or judging myself. My body right now is the result of my life and experiences. I do my best to take care of myself, and to balance my life. I’m not going to label myself anything bad just because I haven’t figured out this particular weight loss challenge. It’s possible that with this chronic pain, it’s extra-difficult for me to lose the weight right now. I’m just happy I’m no longer gaining, and that I have lost 10 lbs. That’s a thing to celebrate! Yay!

Anyway, I have noticed in the past when I have a significant amount of weight to lose, that as the weight comes off, I find myself emotionally processing events that happened the last time I was at that weight. In my 20s, I gained weight while living with a roommate who cycled off his medication shortly after I moved in. He decided I was trying to ruin his life, and I ended up having to flee that apartment while he was screaming at me and throwing dishes. I called friends, grabbed my cat Leo and my dog Mocha, and rented the first pet-friendly apartment I could find. It was in a not-so-awesome building, somewhat unsafe with gunfire occasionally audible at night, cockroaches, mice and bedbugs, but it had a door that locked and that was all I needed at the time.

I continued to gain weight after I moved, and six months later I was able to start losing. A year later, I was back down to the weight I was at when I had to run from our shared apartment in fear – I found myself having nightmares about the incident, and thinking about it at random times during the day. I would shake and shiver with the memories. But after a time, that all passed, and I was easily able to get down to a more accepted weight.

There was a lot going on around the weight I gained from 2012 – 2015. My mother was diagnosed in 2013, but in 2011 – 2012, our dream business didn’t work out and we needed to move into less than ideal living situation, with little privacy, little quiet, and a lot of stress. There was added financial stress at the time, and just when things were starting to stabilize, my mother was diagnosed and my ability to cope with all of the stresses in life was severely challenged. For two years, my whole life became focused on making enough money to be able to visit my mother before she passed. In the end, I had to make a decision about whether I would go see her right before she died and miss her funeral, or not see her again before she died, and be able to attend her funeral and maybe make myself useful in the weeks that followed.

Right at that time, we had an opportunity to rent a house in Ucluelet. I think that most people reading this haven’t experienced life in an area with a housing crisis. Let me explain:

A housing crisis is declared usually when there is less than 2% vacancy rate. When I moved to Toronto in 2000, there was less than 1% vacancy rate. What this does is skyrocket the rent landlords are asking for, and the quality of housing available plummets. We are talking dirtball landlords exploiting desperate people. My partner at the time was lucky to secure a bachelor apartment in a decent neighbourhood because his relatives knew the superintendent of the building. We were lucky to get an apartment that was infested with cockroaches, was 450 square feet, and cost 2/3 of our combined income.

I lived there for five years before I was able to find something better. In a housing crisis, you have to take what you can get, pay through the nose, and hold on until you can find something better through networking.

Sweetie and I had been desperate to move for a year and a half. We looked at every place that came up for rent. We saw terrible things. We saw a place without heat or closets. We saw a place that didn’t have a sink in the kitchen. We saw a place infested with spiders. We saw an insanely tiny expensive place that had roommates.

We were seriously considering leaving the west coast. We hated to consider it, but we couldn’t last where we were much longer. We were so desperate for sleep we would spend days off combing the beaches for quiet nooks in which to nap. Once we had to move our nap spot three times before a dead seal which has washed ashore finally made us give up on the idea of REM sleep.

So when my co-worker bought a house and told me her rental house was going to be available, it was a glimmer of hope. A tiny splinter of possibility. A lot needed to happen.

First we needed to buy a car. That was a tough negotiation, but thankfully it was successful. It took six hours to negotiate a price I could afford. Once we had the car, we applied for the house, and got it.

The end result was I had to move right when my mother was dying. From the outside looking in, it seems like I could’ve waited to move. Some other place would have come up, right?

Probably not, guys. This house was a rare opportunity, and we needed to jump on it, or else resign ourselves to starting over in a new town. If you still doubt me, I’ll add that the tenants who replaced us in the Tofino house moved out just a few months later, and the tenant after that was a zombie for lack of sleep for over a year until she moved in next door to us, when we helped her network into that place, along with another friend who had just been kicked out of her cabin because the owners wanted to turn it into a vacation rental.

The housing situation out here is brutal and cutthroat. So when I say I had to move, I had to move. It wasn’t a selfish or greedy thing, it was a survival move. It was that, or start over in a new town from scratch, which would have been even more costly and an even bigger risk.

All of that? Stressful. Right? There were so many things going on. I found the limits of what I could cope with, and I found my ability to handle anything remotely stressful had totally broken down. We moved, the universe and our friends stepped in to help hold us up, and thank God, we are doing so much better now! I am so very grateful, so so grateful!

While all of this was going on, I was steadily gaining weight in a way that felt unstoppable. I tried to stop it, y’all. But here’s where weight loss and gain becomes even more complex: there are social and psychological reasons we eat what we eat. For me, when I’m gaining weight, I know what I need to do. I need to stop eating dairy, sugar, and flour. I need to get at least 60 g of protein per day. I need to get used to feeling hungry all the time.

You know what I don’t have the energy to do when I’m under stress? Plan meals, shop, prepare meals, and ignore all of the internal monologue about how much I’d rather be eating flour, sugar or dairy. I am *still* finding it challenging to stick with my nutritionist’s meal plan, because I don’t get the food high from the nutritionist’s food.

The food high.

You know what I did the day before I checked into the ER? I had been in bed all day, having called in sick to work, having taken a scary amount of ibuprofen and Tylenol #2, I ate some chocolate mint ice cream.

I shouldn’t be eating it at all. When you’re in physical pain, and you’re really in that MOMENT, all you want in that moment is to feel a tiny bit better. You know what makes me feel better?

A freaking food high! A food high!!!

I don’t think everyone experiences food highs. But we recognize each other. We *know* what true food love is, and it’s not the healthy kind of love. It’s a dirty secret love. I honestly believe the food high is comparable to a mild narcotics high. Ice cream is my heroin. That in itself is a blessing, because I’m not an actual user of heroin, and I’m not so egotistical as to believe I couldn’t fall down that rabbit hole if the pain got bad enough. Did you know that women with endometriosis sometimes turn to heroin for relief? That usually happens after doctors stop prescribing them narcotics for pain management, because endometriosis isn’t yet a well-understood dis-ease, and when these women lose hope they reach for the cheaper-than-legal-narcotics temporary solution. Yep. This war on opioids is just going to create more heroin addicts. We can’t abandon people in pain, or label them as a drug-seeker and expect them to somehow get better without assistance. I digress.

So I ate the ice cream. Sweet Jesus, I elevated out of my body for a good ten minutes and just floated on that sugar high. For 30 minutes I had no pain at all.

Was it worth it?

Well, after the pain came back, no it wasn’t worth it. The pain came back after only 30 minutes, and I’d blown my calorie allotment for the day.

But during those 30 sweet, sweet minutes, I was high, man! I actually felt good!

So this is why food is going to be a lifelong thing I need to manage, especially where pain is concerned. I remember that towards the end, my mother couldn’t enjoy much, but she still liked milkshakes.

I hope I still enjoy milkshakes right to the end. Dairy and sugar definitely makes my overall condition WORSE, and maybe it delays my healing when I do eat it. I’m not sure. I know that my nutritionist, my naturopathic doc, AND my surgeon would prefer I abstain from inflammatory foods entirely, at least until after my surgery!

But the food high, the pain relief. That’s why I may never again go completely vegan, completely endo-diet, etc. In fact, when I fell off the vegan wagon, ice cream was my gateway food. I can’t look at the mint chocolate ice cream incident as a failure – it’s actually kind of awesome that something as inexpensive and readily-available as FOOD can elevate my mood and provide profound short-term pain relief.

It’s not great, and it’s not terrible. It just is a part of my life. I’m both grateful for it, and a tad resentful of it. Why can’t I enjoy a mango as much as Suzanne Somers?! Because I’ll always be chasing the chocolate dragon!

Well, not forever. I think that once I’ve done a lot of the emotional processing (via therapy), that my food issues will even out. It’s just a much longer, more involved process, this time.

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6 thoughts on “Chasing the chocolate dragon

  1. YES!! I want this printed on a t-shirt, or a sign I can carry around all day: “This war on opioids is just going to create more heroin addicts. We can’t abandon people in pain, or label them as a drug-seeker and expect them to somehow get better without assistance.” I wish more people understood this. Now that I’m officially a chronic pain patient myself, I’m likewise obsessed with pain theory — and trying to figure out what I’m supposed to be getting out of this experience. I also understand now why I gravitated towards pain-killing substances throughout my life…I was in actual, physical, pain! (Even if it was so routinely dismissed by doctors that I forced myself into a state of denial.) I’ve wondered about women like Mary Todd Lincoln, too, and what they must have gone through…one thing I find interesting is that I know several other women around our ages struggling with pain-related issues who are of a similar spiritual/metaphysical mindset. Could be coincidental or just an aging thing, but something tells me maybe not?

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    • I do think we are talking more openly about it. That can seem like an increase because it’s visible. I think Mary Todd became a recluse in part due to chronic pain. Paparazzi will keep you inside only so long, and she was a bright and strong willed woman. Pain isolates, I think that’s what happened . It used to be people would isolate and they would disappear. Now they go online.

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  2. Hey Kate- thank you for sharing what you’re going through. Your honesty and investigations into getting better are so helpful to me and I’m sure many others. This sentence stood out to me: “would shake and shiver with the memories”. I’ve heard that shivering itself can switch the body from stress to release mode. I’m not sure if that came up when you were speaking with the horse trainer.

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