Once More Into the Breach, or, Heidi’s Health Does More Interesting Things
This is a post I’ve been writing in one form or another for a few weeks. One version earlier this week got all the way to the publish button before I trashed it. Yesterday I tried to write a regular promo post, but since yesterday was also the day I saw the neurologist and got me some reality checks, I couldn’t do much of anything at all. Part of me thinks it’s too early to post, and that might be true, but there are three reasons to do it now. One, we keep having to tell the story to friends and family, and this will be easier and less painful for everyone, I think. Second, by the time we get to the point that all the tests come back, it will be mere days before Love Lessons comes out. This crap has taken enough from me, I don’t feel like giving it my first solo release since January. The third reason is that I can’t say I mind the idea of being prayed for, chanted for, thought fondly of, or whatever is your personal preference. One way or another, I’m going to need it.
First, some backstory.
It’s no secret I deal with chronic pain, too many allergies, and weird health maladies nobody can figure out. Refresher course can be found in the “health & fitness” category, but suffice it to say since 2002 it’s been a steady downhill roll, with some ups and some downs, some revelations, but really despite everything I only keep getting worse. I had a huge lift last summer when I figured out my big allergies, and for a good seven months things started to look up. But by the time I got to the spring, I was still having limb pain, particularly lower back. I re-entered physical therapy, and for awhile that did very well. In June and July I was feeling better than I had in a long time.
Then August came. I had been having stiffness in my legs, then tightness and pain, but by mid-month it got very bad. My therapists have been on me to get “better shoes,” but the truth of the matter is I can only stand bare feet or minimalist shoes. But my legs and feet hurt so much that I made an appointment with a podiatrist and drove down to Des Moines to find shoes. I will love The Fitting Place for the rest of my life. The owner himself saw me, sold me two pairs of shoes that immediately alleviated a lot of hip pain. I cried in the store, to my mortification. I lived in hope that by the time the podiatrist appointment came around at the end of the month, she’d simply rubber-stamp my footwear and maybe get me some inserts.
Unfortunately the pain did not get better. Often the shoes feel so heavy I have to take them off despite how much they help. Too much time on my feet still rendered me unable to walk, and by “too much time” I mean a few hours. My Vicodin use went way up. I was eager for my appointment by the time I got there.
The podiatrist took about three peeks at me, frowned a lot, made me walk and did some strength tests, and fast-tracked me to neurology.
It unnerved me, the way she looked, and I approached my next appointment with deep trepidation. I still felt lousy, and foggy, and in a Hail Mary I decided to play with full-on veganism for a while to see if that helped me. It did–but only clarity, not pain. Partly due to workload partly due to nerves, partly to show neurology just how bad I can get, I stopped all massage and physical therapy for two weeks before the appointment. By the time I showed up Friday, I was hobbling. Despite three laser treatments at the chiropractor, I failed almost every strength test they gave me. They asked me a million questions, frowned even more than the podiatrist, and gave me more tests. Then they ordered a brain MRI, a battery of blood tests, and set up muscle and nerve tests in the office. This is all coming down in the next few weeks. On the 24th of September, I have the last tests and then meet to get the results.
Right now they are ruling out some big long auto-immune thing that sounds shitty and I can’t remember the name of, and multiple sclerosis. If they don’t confirm either of those, they don’t know what it is. I got the impression there weren’t going to be a lot of answers, not easily, not readily, maybe not ever.
So yesterday I sat with the hard, ugly truth, that either I have a horrible, incurable disease, or I will continue to not have any idea what I have and at best can throw crap at it and hope for the best.
I will be honest. Yesterday was not a pretty day. I had a difficult time getting through conversations without crying, even ones that had nothing to do with my health. When I was able to rally and move forward with things, it was as if there were shadows all around me, and sometimes I would turn and get consumed by them without any warning. I tried not thinking about it, tried the positive attitude route, but it was hard because there is no win. At best I could be told I don’t have something awful but will still hurt and feel like shit all the time. At worst I’m told I’m fighting a battle without a lot of win. Whatever way I looked at it, I faced something uncertain without a lot of control. This is not an area in which I excel.
Yesterday that visit did what I usually do not allow my health to do: it stopped me working. It altered some of my working decisions. It rendered me unable to write a simple blog post about my book. It kept me from being able to talk to anyone but my very, very closest friends and my very immediate family. It shaped every move I made, whether I wanted it to or not. When I drove to pick up Anna, all I could think of was how there could come a time, anytime really, when I could no longer drive. Every little thing I did seemed like a window closing. It made me sick. It made me terrified. It made me feel helpless and awful and small.
Because I could not work, because I could not calm down, I tried to be productive. I do what I do, which is assumed the worst-case scenario and decided how I would approach it if it happened. To me MS is the worst, though honestly I don’t know if the other one is as bad or worse or what. In my head MS has been what I’ve feared for well over seven years. (As evidenced by its inclusion in Special Delivery.) MS is the devil I did not want to meet, and so it was the one I shook hands with yesterday. What would I do, I thought, if they said that’s what I have? I could only think of one thing. Dr. Wahls.
You may have heard of Zach Wahls, the handsome, intelligent young man from Iowa City who put his college career on hold to champion LGBT rights in honor of his mothers after his speech to the Iowa House went viral. I was there for that speech, saw it from almost the exact vantage of the camera. I have enjoyed his career and always stop to see what he’s doing when I hear his name. However, because of my brother, I also know his mother has MS and that she beat it with kale. That was about all I knew. I suspected it was a bit more complex than that, but when I thought about how I would approach MS, I kept thinking, “I’ll eat kale like Dr. Wahls.” I wasn’t ready to research MS on the Internet, because I knew it would scare me and be over my head. But I thought, I can eat kale right now. Maybe I’ll try to make kale chips again.
I trolled kale chip recipes, and would you know it, almost immediately I end up with a link to Dr. Wahls.
I watched her Iowa City TED Talk (native Iowa moment: leave it to Iowa City to have its own TED talks) about four times. When I would stop and walk around, all I could see were those images juxtaposed of her in the chair and her on the bike one year later. I did some more research on the MS diet. I watched the video again. I sat and thought about it, and then I came back and watched one more time.
I thought, no matter what the fuck happens, whatever they say, I’m goddamn eating kale, heaping platefuls, every goddamned day. I’m cutting gluten. I’m eating my colors. I’m not sure about the organ meats or the meat at all just yet, but if I have to I will. I vowed beginning that second I would adopt that diet.
Because honestly, it doesn’t matter if I have MS or something else or I continue to have my Special Snowflake Status. I have already radically altered my diet about six times. The ONLY THINGS LEFT are to get crazy-serious about the dark green leafies, making them my religion, and to cut gluten. These are the two diet things I have not embraced. They are all that are left. They are the universal recommendations of every fix-your-health diet I’ve ever read. The only part that’s up in the air is the meat, and I’m not saying no, but mostly saying not right now because the very thought makes me ill. Theoretically steak sounds great, and weirdly even liver, but my body is throwing up the same kinds of red flags as when someone well-meaning suggests I eat goat cheese. My body and brain are telling me hell to the no. At least for now.
I’m going to go through these tests. I’m going to hear the results. I’m going to go to my regular doctor who is the big Furman/whole foods/vegan enthusiast and get his perspective. But from now until the end of time, I’m eating this diet. I am marrying the idea that within three days I will be heartily sick of kale and will keep eating it anyway. I am acknowledging I may never eat bread again because you simply cannot make gluten-free vegan bread without a lot of hell and with much taste. I have a dehydrator on order (kale chips–those I might never tire of) and I went downtown and bought a Vitamix instead of the Macbook Air I was planning to save for. I’d already splurged on new knives (thanks Jeff and Caryle, for the gift card).
The food thing is something I can do, and so I’m doing it. Yes, my diet is now STUPID restrictive. No, you probably can’t eat happily with me. No, I can’t go out to eat many places, not easily. Yes, this is going to be a huge pain in my ass. Yes, I have to re-figure out Christmas cookies again. But holy shit, if this keeps me out of a wheelchair? If this puts me back on my bike, metaphorically, literally, or in any way at all? Fuck. Yes. I’m doing it. Forever.
I have no idea how I’m doing food at GRL. I’m planning on making some meal bars to take along, bringing my vegan shake mix, and hitting the grocery store. Somehow. I’ll make it work, because there’s nothing else to do. By then I’ll either know that I know nothing, or I’ll know exactly what I’m fighting. I would love it if I already felt a lot better and eating was a joy because I knew it was medicine, knew it was the reason I felt good. If it’s not, I’m still going to do it. Because honey, I got shit to do, and I’m not quitting until I have no other alternative.
That said. Yes, I will take your kind thoughts, your prayers, your anything. If you want to think hopeful things for me on September 24 at 11AMCST, I’ll take those thoughts. If you happen to live in Atlanta or are driving to GRL and have a car you’d be willing to use to help me get food, yes I will accept your help, and I would pay you for your trouble. If you’re my family or friend and want to cook with/for me, email me or Dan and we’ll give you instructions. If you want the nitty gritty on health stuff, family, probably email Dan. I still get a bit raw.
I’ll post the answer, whatever it is, when I have it on the 24th. I’ll post updates on how I’m feeling and whether or not stuff is working. I will say two kale meals in, I’m feeling pretty good. Feet are still stupid, but not half as bad as they were on Friday–when I’d had pot pies (with wheat) the night before and then zucchini fries (wheat flour again) at lunch. I plan to buy a stupid amount of fruit and veg and will make smoothies and soups and sauces and all kinds of fun crap in my Vitamix, because let’s list this now: no milk, egg, wheat or ALMOND. What the hell. And kale as far as the eye can see.
So that’s my story. That was my yesterday, and this is my today. Today has a lot more hope. Also kale.
Thank you, village who supported me yesterday and today and those of you who I know are about to hit me with Full Force of Caring once I post this. I may not be able to figure out what’s wrong with me, but I have one hell of a support team, and I love you all.