A Whole New World

So it’s been about six months since my last post and that’s not because I’ve been in some dark hell-hole trying to survive. It’s because I’m healing, but slowly and fragilely, like any real person.

I haven’t eaten anything toxic to my body on a regular basis for six months. I’ve been skating twice a week for the last three months. I’ve been dancing and choreographing. Essentially, I’ve been living. Am I still often in pain? Yes. Does it sometimes get so bad I don’t think I can continue to cope? Yes. The difference is that now I’m beginning to believe it will get better, that there is a pit I’m currently in, but that hell is not eternal. I will have another good day, it’s merely a matter of time. This didn’t happen overnight and I’m still learning to have faith, to truly believe there is something good out there for me.

But these are some essential facets of this seismic and slow evolution:

1.     Food. I don’t eat what is bad for me. I started with essentially nothing, just celery and chicken, and built my diet back into something that sustains me. What works for me thus far (but might not work for you… all IC is different):

a.     Grains: Amaranth, brown rice, quinoa, oats, teff, sorghum, cassava, buckwheat

b.     Veggies: Broccoli, green cabbage, iceberg lettuce, celery root, golden beets, cauliflower, cucumber, basil, and occasionally potatoes

c.     Oils: Olive oil, gee

d.     Proteins: Chicken, seabass, shrimp, scallops, turkey and occasionally almonds.

2.     Mr. Bongort aka Bongo. He’s our cat now. He found us two days after Cymbal died, but didn’t become ours until five months later. He is a handful (literally, the guy is part Maine Coon), but Cymb chose him and we love him for the oddball he is. Nothing will come close to replacing Cymbal in our lives, but having Bongo gives us a super-fluffy puffball that won’t stop purring, which is a pretty good runner-up.

3.     Embracing my love of figure skating again. I love skating in a deep way that sometimes even I forget. There’s a reason I was competing for UCLA while getting a PhD and it had nothing to do with the schooling and everything to do with my undying love for this sport. It’s never been about the competition aspect for me, but having a goal does help focus one’s skating. So I’m competing in the Showcase events (essentially Theatre on Ice) at the local competitions with the hope that maybe I’ll get to the National Showcase later this year in Ft. Collins, CO. It doesn’t really matter if I make it there or not, or even if I compete against anyone. It’s simply been a joy to be choreographing two really fun programs and skating my heart (and lungs) out on the ice. I even throw some doubles in at the end when I’m all warmed up. Also, exercise really helps reduce my IC pain and when I’m on the ice, I’m pain free. Yes. Completely pain free. It doesn’t last the whole day or even the whole morning, but for those 50 minutes on the ice, I’m finally free and it’s a slice of heaven.

4.     Justin Bieber’s Purpose album. Yup. I went ahead and said it. I had written the guy off as much as the next person of my generation. Then I read a book that seemed based very loosely on his life (When It’s Real, a cheesy teen romance) and I got curious about what he was up to after it all seemed to fall apart for him. Turns out he grew up and got married just like the rest of us. And then I listened to Purpose, specifically “I’ll Show You” and “Life Is Worth Living.” Compared to what I expected, it was raw and real in a way I didn’t know I wanted from an artist. I don’t love all of his stuff, but I appreciate his music enough to already have bought tickets to his Changes Tour in Denver this June.  Especially after learning about his experiences with a chronic illness and simply the chaos of life in general (learn more in the YouTube series: https://www.youtube.com/watch?v=cAVgKdbDlRY ), I decided I liked this kid and his music. Please don’t ever call me a Belieber. But yes, I do own a Drew House corduroy hat. It’s actually kinda cute.

5.     Having faith in myself and Rob. We’re both darn smart and the further I explore my IC, the more I realize that we can figure this out. I trust us before any doctor. We know my version of this disease and are thus uniquely qualified to find a way through the minefield it has left. This process is slower than frozen molasses, but I’m living at a 3-5 right now instead of a 7-10 and if that takes six months, imagine what we can do with the rest of our lives.

Inexorable Fear

It’s been a crazy week, but seeing Lauren Alaina live in concert at the local county fair was just what we needed. She was fun, made me laugh so much my face hurt fun. I find it’s always better to see these artists in smaller settings where their personalities truly shine and where I don’t get stressed out by large crowds and epic distances to the bathroom. Chancey Williams and the Younger Brothers Band were also amazing. So amazing we walked away with an autographed CD and praise on our lips.

Update:

So if you’re out doing things like a concert, you must feel better. Yeah. Right now I do. Last weekend I got to thinking that although potatoes didn’t come up as something I’m allergic to, they seemed to be linked to my pain. I stopped eating them on Monday and by Tuesday I felt a lot better. We’re talking a drop in pain from a 10 to a 6 on my Pain Richter scale. All because of potatoes? Seems so.

There’s this unfortunate thing that happens when you have an overly sensitive body… you suddenly become sensitive to foods that were non-irritating. Back in May potatoes were the only thing that didn’t make me feel nauseous or IC horrible. So we never find a permanent food solution. We always have to be vigilant for things that may start hurting us out of the blue. It’s utterly exhausting, but there is truly no way around it.

I’ve also discovered these things are a no for me: coconut, ham/pork, and turkey. So for now it’s chicken or fish or bust, which is fine since I’ve never been a huge meat fan. I am, however, going to mourn the loss of coconut since many of its byproducts are in things I’d like to use.

 

Reflection: Inexorable Fear

My husband often points out that I must have some type of psychological trauma from being essentially tortured by my body more often than not. And he’s absolutely right. I know very little about psychology, but I do know that my fear is inexorable. Even when I start feeling better, when my pain drops to livable levels, my fear lingers in the background.

How long will this respite last? When will I start feeling bad again? How bad is the next pain going to be?

These questions and more constantly circulate through my brain. I don’t want to be thinking them; I don’t want to be perseverating on the negative and living in fear. But I can’t help it. My fear of the pain is a visceral thing. It snakes through me, twining about my every organ, making every beat of my heart pulse with its power (Can you tell I write a lot of angsty fiction?).

I do my best to try to think positively, to take a deep breath and live in the moment around me. It works sometimes, mostly when I’m skating or dancing and the world just falls away no matter what. But when I have half a second to think, the fear is back and I’m fighting again to simply live, to not be consumed by my very formidable set of demons.

I used to have a relaxation strategy that worked most of the time. I did yoga every day, but it wasn’t exactly the yoga that did the trick. It was Cymbal, my kind and loving kitty. She would join me and purr her face off and sit on my belly, becoming the perfect heating pad after I was done. She always got underfoot, but she didn’t care, she just wanted to be with me and to share the activity the only way she knew how. She did yoga with me for years, up until two days before she passed away from kitty breast cancer. Through all her chemo, her hell, she stuck with me. So you can understand how I can’t exactly use that strategy without her around.

So I have to dig deep and find something new that can calm the tempest of my nerves, my fears. Stress is one major factor in IC pain, so having this constant maelstrom doesn’t do me any favors. In fact, it creates a negative feedback loop that drives more pain. I know I need another strategy, another meditation that calms my soul, but for the life of me I can’t imagine one. I’m usually stuck simply wishing she were still here, wishing Cymbal could help me delve into that place of peace and serenity like she did for so many years.

So what to do? I’m honestly not sure. I know it will take time. Cymbal has been dead four months today. That’s no time at all. And since her death my health has been in free fall. I was nauseous for a month straight, then my IC pain flared to the highest it has ever been for two months straight, and then it fluctuated like crazy for a month while staying at generally epic levels. All this tells me I need to find a productive way to help my body while also healing from the loss of my main source of calm when it came to meditation and letting go of fear. That’s a lot to ask, but like every mountain this disease presents, it must be climbed. I only hope I can make my way through this journey with half the grace that Cymbal showed during her battle. You may argue she was only a cat, and that’s fine, but for me she was so much more.

Actually I Can't

Thank you to all those who sent kind words my way or simply just spared me a positive thought in the chaos of the universe. Every single bit of it is welcome as I continue on this journey.

I found a quote in one of my tarot books this week (yes, I’m trying to get in touch with my intuition using tarot) that really spoke to me:

“Wisdom is crystallized pain” - Rudolf Steiner.

The guy elaborated with “true self-knowledge has no other option than first to go through pain and suffering.” Now from what I can tell, he’s just another old, dead white guy. But it got me thinking. I’m not sure I can describe my pain as crystallized. That word, of which I am quite familiar having a PhD in geochemistry, implies that the heat has passed, the suffering has abated and the pain has morphed into something else, which is now the root of wisdom. But my pain doesn’t pass, so how can I possibly be wise? Enough esoteric wrangling with existential matters, however. 

I’ve decided to make these updates into two parts. One will focus on the present, on the evolution of my current situation, on the supplements/treatments I’m trying and results I’m getting. The second will be a reflection on whatever I want, something I feel I need to share. Feel no pressure to read any of it. This is something I’m doing for me and it does not require participation from your side of the screen. If you want to follow me along this thorny path for a turn or two, however, please be my guest.

Update:

So most importantly the results came back from my allergy test sent in by my Naturopath. Why other medical professionals have never thought to run this sort of test on me before is incomprehensible. But I didn’t insist, so the judgment will have to take a break on this one.

It turns out I’m currently allergic to far more than any one person ought to be. This verifies the theory that there’s a lot more going on than some bladder lining being inflamed. It means my whole filtration system is inflamed and that it’s time to start tackling the small parts, not just the big ones. Indeed, often in life, the universe and what science I’ve done the cause is the sum of many smaller things not some massive tidal wave. So I need to be diligent and kind to my guts in a new, more cognizant way. 

Currently I am allergic to: Asparagus, beef, blueberry, cacao, candida, carrot, casein, clam, cow’s milk, crab, egg albumin, egg yolk, English walnut, garlic, gluten, goat’s milk, green pepper, kidney bean, lima bean, mushroom, navy bean, peanut, sesame, soybean, string bean, sweet potato, whole wheat and yellow squash. Of all those, I’m only deadly allergic to clams, which I have never tried in my entire life, so that was nice to find out before any type of reaction occurred. Everything else inflames my guts, but doesn’t come close to killing me. Ironically, the entire past week I’d been eating nothing but 100% natural beef hotdogs, green peppers and breads made without the irritating additives I already knew were bad. So 100% of what I was feeding my body elicited an allergic reaction. Fantastic… it’s like I had a sixth sense for making it all worse.

I’m going to stop eating all of it. Everything that irritates me plays a part in my pain, so it’s all out. So what am I going to consume? For right now just oatmeal and Yukon Gold potatoes with gee (no more butter), olive oil and sea salt. Bland as heck, but a good baseline to begin trying things on the “you’re not allergic to this but it still might cause you IC pain” list. I’m going to add one thing a week, paying close attention to how my pain evolves. It’s going to take forever, but it’s going to be worth it.

 

The Reflection: Actually I Can’t

I have a Captain Marvel shirt that says in bold yellow letters wrapping around her signature star Actually I Can. Every time I wear the shirt, I can’t help but think that my superhero phrase of the moment is the exact opposite. Actually I Can’t.

I read an article aimed at those close to people suffering from chronic illness (not just IC, but the whole awful gamut) a few months ago. I wish I remembered the author or even where it appeared online, but what I do remember vividly is this revelation. Those of us with chronic illness cannot just grin and bear it; we can’t push through. Where others might come out on the other side exhausted, we simply don’t come out the other side at all. We run into a wall and if we push, we run into that wall at a higher velocity. We will never get through that wall. Indeed, we have to respect that wall otherwise we will suffer. We have to stay the hell away from that wall.

That means learning to say no to things you can’t say no to. This means disappointing people over and over again. This means that every instinct I honed during the first 20 years of my figure skating career has to be eradicated. Every instinct that I view as foundational to who I am. I defined myself by pushing beyond my current abilities, by working through exhaustion, by becoming the best version of myself I could imagine through sweat and pain. I competed with a kidney infection for goodness sake. I trained myself to ignore my body, wired my brain to believe it knew better, that I could take the abuse.

 Even now, I still don’t take a seat when I need to, I don’t take a break because I know I can push through. I have years of experience telling me I can.

But I can’t. Not anymore. I can’t and that isn’t a dirty word, that isn’t the world telling me no or society putting me down. It is simply the honest to God truth of the matter. I can’t. So who I am I now? How do I become someone else, someone who doesn’t fight until their knuckles are bloody and their body is destroyed? I’m not entirely sure, but I’m learning to recognize this variety of thought, to understand that I can’t, that’s not a bad word. At least, not for me.