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 italmost 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.

26 Comments on “Once More Into the Breach, or, Heidi’s Health Does More Interesting Things

  1. You have all my prayers and good thoughts and positive vibes! *hugs you tight* Heidi, you are an inspiration to me, quite honestly. You are the type of woman I would hope I have been at times and would like to be in future. If I were younger, I’d say you were my role model. 🙂 But being an old fart as I am, I will just stick with inspiration. *more hugs* Whatever it is, it will not stop you, of this I’m pretty damned sure. *sends hugs for Dan and Anna too* Yes, I’m huggy!

  2. These things are incredibly difficult to deal with. You have all my empathy and support, Heidi. I know that life is hard enough to navigate when all is calm and peaceful… add the stress of illness and pain, especially undiagnosed illness and pain, and it becomes nigh-intolerable. I wonder … this is a long shot for sure… if your doctors have considered or investigated chronic Lyme disease as a possible cause for the torment you’re going through. I ask because it happened to someone I know. It’s just not something that is commonly recognised, and can manifest in many of the same symptoms you’re having. I hope you get some definitive answers soon. My love to you and Dan and Anna.

  3. I’ll be driving to Atlanta for GRL that Tuesday and my husband on late Wednesday/early Thursday, so if you need a ride, just let either of us know! Or even give us a grocery list, so you won’t have to take time away from the con, and we’ll go for you. 🙂

    *hugs* and good thoughts for you.

  4. Seriously, try cutting out gluten. I know some people who have severe gluten issues. I have fibromyalgia, which is frustrating as all get out sometimes. I have a dual diagnosis of CFS as well.

    I’ve found massive pain relief from adding malic acid to my daily regimen of vitamins and supplements. Took a couple of weeks to kick in, and they’re frigging horse pills, but soooo worth it. Also, lecithin has helped me with some pain and mental fog. Another help has been B-12 sublingually every morning, helps me with energy.

    But seriously, do a cold-turkey no glutem diet for at least a week. If you immediately feel better, it’ll be worth it to have your health back. Our bodies change. What we could tolerate back then we can’t now.


  5. For those wondering the thing that Heidi can’t remember the name of is myasthenia gravis. It’s an auto-immune disorder.

    • My mom had myasthenia gravis. It went undiagnosed for several weeks as it worsened but a neurologist in Bangor Maine, who was some kind of visiting specialist, recognized it and diagnosed it. They gave her some medicine and she got way better very quickly. If you need more details on this I may be able to help you further.

  6. Keeping you and your family in my thoughts and prayers. I know for me the worst part was not knowing. Once I had an answer, then I could research and come up with a plan.

  7. The auto immune system truly can make life seem like a big ugly joke when it decides to fuck up, that’s for sure. I remember when mine did with an acute case of Sarkoidosis (English translation? No idea 😦 ) and I couldn’t walk a single step without wanting to hack off my feet so they would stop hurting. Thankfully it got better eventually but I still remember that and I feel with you. I cross my fingers for you for whatever information you might get on the 24th. Even if it’s MS, then at least you’ll have clarity. I’ve got 3 cases of MS among my family and friends and for them all it was bad news to get the diagnosis, yes, but they all said that in the end for them it’s better to know and to deal with it than the uncertainty.

    I wish you all the best and my fingers are crossed.


  8. I’m so sorry you’re going through this, but you sound like you have a wonderful plan- you can have other greens and fruits and veggies? My parents gave me a Vitamix for Christmas and every time I call my mother, I hear it going in the kitchen. The food smells and tastes so clean! And I have become hooked on bright colors. My eye immediately goes to all those glorious reds and yellows and greens and orange foods nature has given us.

    Thanks for the link to the TED talks. I am also hooked on TED and try to watch one every morning (when I should be exercising) I like to give links to my patients who have computers. If I can help you research anything, or talk through, please let me know- I’m a nurse practitioner in my day job. And I see astounding change and miraculous healing EVERY DAY. The human body is a miracle and we don’t know everything there is to know. Hugs, Sarah (sarahblack5@yahoo.com)

    • What Sara Said. My docs are already starting to say I’m a medical miracle, and you know where I was a few years ago. Our bodies are marvelously fragile and resilient, and our minds are more immensely powerful than we realized. You are going to be better than okay babe. Much love to you and Dan and Miss Annabanana.

  9. Oh sweetheart, to me you’re a strong, bold, beautiful, woman. The loss of control and the not knowing must be so damn frustrating. I’m sending prayers, vibes and ((hugs)) hoping for the best news later in the month. Stay positive. I know it’s hard right now but that impacts your health too. ((Hugs))

  10. Praying for you and your family, Heidi! You might ask the hotel you’re staying at if you can get an extra refrigerator for your room to store your food/drinks in. Many of the hotels in Atlanta are very helpful if you let them know and plan in advance.

  11. Like Birte I had sarcoidosis, and I do wonder if you might have it too. In me it manifested as arthritis in most joints, especially my limbs, as well as weakened lungs, having started with weird skin lesions. But it can cause a wide variety of symptoms. It also causes general lassitude aka no energy at all! Worth checking if other tests are negative and they don’t know what’s causing your illness. The good news is that it usually clears up after a while. It is also linked in women to thyroid malfunction, sometimes a while later (as happened with me). All best wishes.

  12. So sorry to hear this! Sending positive thoughts your way and hope you get definitive answers soon. So much easier once you know what it is you’re fighting/working with.

  13. Thank you for sharing this. I think it helps us and also you, in that sharing a burden reduces it in some small way. Please know that you have a lot of people rooting for you. Now, in a few weeks you should have enough kale recipes to share and that should be very, very interesting.

  14. So sorry to hear about your health problems, and it’s really terrible that neither option for diagnosis is good. It’s awful and unfair that you have to deal with this. Sending positive thoughts and prayers your way.

  15. Heidi, biggest hugs EVER. I have a few nasty little auto-immune diseases and ended up having a hip replacement but still have a screwed up knee–still, I responded well to conventional meds and try (TRY) to avoid inflammatory foods. At my worst, it was 2 years of suffering and that dragged me down, especially the feeling that I’d “lost” the person I thought I was–not to mention the suckiness of having to wear boring shoes 😉 I hope you get some answers/find some relief soon.

  16. My thoughts are with you Heidi. I hope everything you’re doing helps you get better. I’m sorry you had to buy a blender instead of your computer. If it makes you feel any better, I bought a Vita-Mix blender over 8 years ago and it’s still absolutely amazing. I also got a lot healthier after using it every day since then to make smoothies. I hope it works the same for you.

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