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.

My Pain Is Real

I’m sick of being sick, but most of all, I’m sick of people not knowing how darn sick I am. So that’s where I’m going to start. I’m not trying to create a resource list, to elucidate the effects of certain medications, or even to ask for suggestions from others that are on this horrible hike with me. No, I’m going to start by telling my story. It’s going to be real; it’s going to be uncomfortable. Most importantly, it will be told. The rest will follow I’m sure.

I’ve been diagnosed with interstitial cystitis since December 31st 2015, but I’ve had symptoms since 2013. That’s six years of my life. I’m 31 right now, edging really close to 32. A fifth of my life has been spent in extraordinary pain. I can hardly remember life before the pain, before the anxiety over where the nearest bathroom is located, before the realization that saying no is the only way to heal, before letting people I care about down just became a way of life.

So what is interstitial cystitis (IC)? According to Wikipedia: Interstitial cystitis, also known as bladder pain syndrome, is a type of chronic pain that affects the bladder. Symptoms include feeling the need to urinate right away, needing to urinate often, and pain with sex. IC/BPS is associated with depression and lower quality of life. Many of those affected also have irritable bowel syndrome and fibromyalgia.

It’s that and a million other things having to do with things just not working right down there. And depression? Come on, Wikipedia, if I’m in constant pain, how the hell am I not depressed? I love my pain said no one ever.

But what causes it? That’s the million dollar question. No really. Please get a million dollar grant and start researching that. I know you probably need more than a million dollars, but my point is that IC is a bunch of stuff grouped under one huge, ambiguous umbrella. Basically, our bladders don’t work right, but beyond that all of us are entirely unique. This isn’t a cookie cutter sort of thing. What has worked for me probably won’t work for someone else and visa versa. And let’s not forget that modern medicine has no idea how to solve this one. NO IDEA.

There’s Elmiron, Amitriptyline, and a handful of other medications thrown at us. Medical professionals didn’t believe diet was a major factor in the reduction of IC pain until 2007 (Shorter, Lesser, Moldwin and Kushner) and that’s now the first line of defense given to the newly diagnosed. I’ve seen at least five different medical doctors and as of now, none of them have particularly helped me in the slightest. It’s not that they’re terrible (though some are) it’s that IC is a complete mess medically speaking and we still don’t really understand what’s going on. Traditional medicine can provide no clear-cut solution to IC at this time.

How much pain can you possibly be in? Didn’t you get a PhD, teach high school for two years and compete for UCLA Figure Skating for three years? Yeah. And I did all of those things with IC. I competed at nationals for UCLA while I had a kidney infection. I was landing doubles while my kidneys were on the verge of failure. I have a monumental pain tolerance. This isn’t something to be proud of. Indeed, it kept me from searching for help for years because I could simply grin and bear it. I look fine to you, so you assume I am. I have not been fine since early 2013, before that kidney infection that started this decent into hell. I am not fine. I have moments of freedom from the pain, but they are mere moments and they do not last long enough to give me even half of a deep breath.

What level of pain? Like, you can’t be in catastrophic pain, can you? Yes. Yes, I can. I’ve recently begun to think of my pain on the Richter scale because that’s the only scale I can think of that can accommodate the magnitude of my pain. A seven is ten times worse than a six, a nine is a thousand times worse. Getting an every day bruise or scrape is firmly a one for me. Falling on my hip in skating? Maybe a three. My everyday IC pain level? Between seven and ten. In the bad stretches, I’m at a 9.5-10 nearly every day. On the good days I’m at a seven, and if I’m really lucky, maybe it will sometimes dip down to a five or six. Even at its best that’s a hundred times more painful than falling during skating. That’s for real. But I’m good at smiling and not letting one inch of that suffering show through.

But it’s been six years and I’m done. I’m done hiding how miserable my existence has been for years. I’m done pretending my life is what I want it to be.

 How did I get here? A combination of bad luck, genetics, misinformation and doctors who didn’t listen.

Ever since carnal relations with the opposite sex became a reality for me, I’ve gotten urinary tract infections (UTIs). They suck and I didn’t know anyone in my family who got them, so their arrival blindsided me. And then no health care professionals seemed to give a damn that I got chronic UTIs. That’s just what happens to young women who have sex. I was told by my ER doctor the first time I got a UTI that it was what I got for having premarital sex. Those exact words. So I didn’t question if there was a way to treat the UTIs or if having recurrent ones was unhealthy. I just felt shame and left it at that.

But I did start drinking an inordinate amount of cranberry juice and chewing vitamin C tablets like one ER nurse told me to do. It should be noted that I didn’t have stable enough health care to have a primary care doctor in my early twenties. The one gynecologist I did go to tried to say any pain unrelated to UTIs was related to STDs. I have never had an STD, but she was utterly sure one of them was the only explanation for my additional pain. 

It turns out D Mannose (the stuff in cranberry that helps) really does help avoid UTIs to a certain degree, but all that acidic cranberry juice and vitamin C, that might have been doing some real damage. Who knows. Remember, I have no idea why I have IC or where it came from specifically. 

Anyway, the years went on, my UTIs slowly increased in frequency, but no one suggested treating them. Then I got a kidney infection on a flight from Boston to LA. Somewhere over Colorado or Kansas, my discomfort skyrocketed into an all-encompassing hell that still ranks as an 11 on my pain Richter scale. I remember listening to “If you’re going through Hell, keep on going” on the terrible airplane headphones and repeating the words like a mantra for the next three hours. We landed, my husband to be brought me straight to the ER and we got it treated while discovering a deadly morphine allergy that I also thankfully survived. But nothing was ever the same again.

It started out as brief burning after I urinated in the summer of 2013 and then it slowly just got worse and worse. Finally, as soon as my bladder was remotely full, it hurt, full on 9.5 hurt. Travel became difficult, but I managed, hiding the pain and fear as best I could. The pain seemed odd, unrelated to UTIs and unpredictable. Some days I felt okay, others it was hell all day. By the fall of 2015, I began to suspect caffeine and alcohol made it worse.

When I finally saw a urologist that New Years Eve, he immediately knew I had IC (which is rare, so this guy does get a gold star for that). We modified my diet (http://ic-diet.com/IC-diet-food-list.html) and started me on Amitriptyline. And thus began the trying to things that seemed to help a bit and then after a while seemed to stop helping. Actually, the diet has always helped. Don’t let anyone tell you diet isn’t a major factor in mitigating IC pain. But sometimes, even eating all the right things, I’m in extreme pain.

I should also mention I could swallow a handful of ibuprofen and it wouldn’t do a damn thing. Acetaminophen actually straight up makes it worse. CBD oil kind of helped for a month and then it didn’t. And I refuse to touch opioids since I’m deathly allergic to morphine and I don’t need to open another can of worms that is an addictive medication.

I tried Elmiron a year later. It made my hair fall out and my finger nail beds die, but it didn’t stop the flares. I went keto for a whole year and at first that helped, but then I got so nauseous I had to stop. And by that time, the keto didn’t seem to be reducing the pain either. If anything, my pain seems to have gotten worse in the last few years, not better. Going off hormonal birth control seemed to help and so did stopping the low dose antibiotic I was taking for recurrent UTIs (turns out once you’re married people actually believe in tackling this one), but overall the trend has been down regardless of the medications given to me by the medical professionals.

So now I’m seeing a naturopath and I’m off every single prescription medication I was given. And now I’m willing to share this story because it’s going to take a lot more than just a pill to help me find my path to healing.

I plan to update with anecdotes from my IC journey past and present, actual medical research and everything in between.

 Thank you to Catherine M. Simone (author of To Wake in Tears, Along the Healing Path, and Awakening Through the Tears) and Julie A. Beyer, MA, RD (author Confidence Choices: Customizing the Interstitial Cystitis Diet and Confident Choices: Cookbook for Interstitial Cystitis and Overactive Bladder) for inspiring me to finally be honest and share my story. And thank you to my husband, Rob. I would not be alive today without your infinite love.