Mezzie Learns about Desperation, Diet, and Healing

I’m in pain. I’ve written about my ankle woes, but with the fairly recent addition of pain in both shoulders, I’ve now hit a whopping seven joints in pain, plus occasional finger joint pain (three more). I’ve been written a referral to a rheumatologist, but I can’t get in for an appointment for three months. We’ll be exploring the possibility that I have Rheumatoid Arthritis, Lupus, or another auto-immune disease. This wouldn’t be a surprise with my family and personal history with Celiac disease.

So I’m in an awful position: waiting, not sure what is causing my pain and not sure what to do about it. The oral anti-inflammatory pain medication I was prescribed did bad things to my stomach, so I just take a Tylenol when I can’t function and bear the pain the rest of the time. The shoulder pain is actually more annoying than the ankle pain. Here are some daily things that cause excruciating pain: putting on/taking off a pullover shirt, plugging anything in, opening and closing my driveway gate, hooking/unhooking a bra, pulling up a zipper (especially bad in a dress but surprisingly unpleasant in a jacket), opening doors at my school, turning pages in a book,  writing, typing, petting my dog, cutting vegetables and fruits, stirring, lifting the parts of my scooter in and out of my car, carrying anything, lying down… you get the picture. 

Since anti-inflammatories are out, I looked up anti-inflammatory foods, and…wow. There’s quite a lot of contradictory information out there. Some things are consistent: everyone seems to agree turmeric is good for fighting inflammation. Even my very western doctor was on board with that and said I wouldn’t do any harm pursuing an anti-inflammatory diet, but it would be hard to predict the reduction of inflammation due to it or if any reduction would be significant enough to reduce pain. The thing is, I asked that question in a very general sense before knowing there were about 32,456 different anti-inflammatory diets to choose from, ranging from just eating like normal but adding a daily turmeric pill to something as extremely limiting as the AIP Protocol (which bans black pepper, thus making it hard-to-impossible to absorb the active ingredient in those turmeric pills).

To make things worse, there don’t seem to be any accessible, reliable scientific studies about the efficacy of these diets out there. There are tons of testimonials, and I can’t help but get my hopes raised when I read them because I don’t want the rest of my life to be defined and limited by pain. Since I know what havoc gluten wreacks on my body, I am rather primed to believe in the power of diet on health. It is possible that, if I have a second auto-immune disease, there is a trigger other than gluten. The question is, am I so desperate for relief that I’m willing to severely limit my diet for months and possibly years (if it works and reintroduction of foods doesn’t go well) based on blogger testimonials and a stack of books and cookbooks from the library with questionable citations?

As embarrassing as it is, the answer is yes. Desperation has made me lose any moral high ground I once had for resisting fads and trends I would have derided before. 

I won’t do anything that would put me at risk of malnutrition; no need to worry about that. The most extreme of the diet options allows for plenty of calories, carbohydrates, protein, and fats. It does, however, cut out quite a bit during the elimination phase: grains and grain-ish things like buckwheat, nightshades, beans, legumes, nuts, seeds (including spices made from seeds), dairy, eggs, and alcohol. After a month or two, the bloggers/authors/functional medicine doctors/nutritionists with “degrees” unrecognized in most states promise I will feel less pain. Once I’m feeling good, I get to methodically reintroduce one item or category at a time to see if I react to it. The reintroduction process could easily make this experiment last a year or longer.

And as long as this pain persists, I’m planning on doing it, no matter how stupid I feel, because there’s a chance of feeling less pain, and without it there isn’t. Right now I’m in the research phase: What recipes can I collect? What shopping lists can I prepare? Which of the many diets available will be the one I choose? And then, come the end of June when I’ve returned from a work gig in Kansas where I’ll struggle just to be gluten free, I’ll get started, and I’ll post what I eat and what I feel here. Because here’s the problem: every online testimonial is made by someone who claims to have already done the diet for X months or years and/or someone trying to make a profit off cookbooks, meal plans, or nutritional consultations. There’s an AIP/Chronic Pain Meetup in Los Angeles I may attend so I can meet some people face to face who are doing this and ask about their experiences. 

If I can feel better by changing my diet, great. If doing the diet can help me feel a little less helpless as I get accustomed to more limitations, that’s fine. If I get some placebo relief for a while, I am happy to enjoy a temporary period of less pain. And if I do this and absolutely nothing changes, then at least I won’t feel like I could get better if only I had more willpower to stick to an extreme diet. I’m going into this with my open eyes only partly clouded by hope.

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This entry was posted in Celiac/Gluten-Free, Chronic Illness, Disability, Health, Joint Pain, Personal, Rheumatoid Arthritis and tagged , , . Bookmark the permalink.

10 Responses to Mezzie Learns about Desperation, Diet, and Healing

  1. I’m so sorry you feel sick. It took an army of rheumatologists over two years to find out which inflammatory auto-immune disease I have, and I’ve gone through the exact same struggle as you, not finding meds that work, which made me quite desperate too… And ever since I have been trying to use food as a way to help my body heal too.. Which is not an easy process at all, but I think, hope, the same as you do, that it’s worthwhile trying it at least. I really hope this works out for you!

  2. truewordsfoundhere says:

    Hi Mezzie,

    We have exchanged letters in the past. I was wondering where in Kansas you will be. I live in Missouri.

    It’s either strange or a coincidence, but appointments with specialists 3 months out is something I’ve heard about from a few people. You might already be doing this, but call periodically and ask if you can get an earlier appointment.

    I’m so sorry you are going through this.

    • My pain is getting pretty ridiculous, so I am going to call and see if there have been any cancellations. Thanks for the tip.

      I’ll be in Kansas City for the grading, and then Overland Park, Missouri for a bit. Anywhere near you?

      • truewordsfoundhere says:

        I’m in Lee’s Summit, MO. Overland Park is right across the state line. I’m probably 15 to 20 minutes away by car.

        I have a friend with a daughter who had celiac disease. I can reach out and see if they know of any eating places she can go to, if that would help.

      • truewordsfoundhere says:

        Oops I meant has Celiac not had. Need to proofread.

  3. That would be great! I did find two Celiac-friendly places last summer, but the more options I have, the better!

  4. truewordsfoundhere says:

    My friend recommended Minsky’s Pizza, which is a local concern for pizza, and Fiorella Jack’s Stack for BBQ. I think he lives on the Kansas side of the Kansas City metro area.

    He recommended going online to the restaurant website. He gave a caution on Mexican food, saying his daughter got sick after eating at Salty Iguana. He thinks the restaurant did not handle the food cautiously enough.

    I’m sure you know to tell the server you absolutely need gluten free. He said nearly every restaurant has gluten free options. His daughter is very sensitive I think from something her mother told me once.

    Hopefully you get to a place that has servers and chefs/cooks who understand how to prepare and serve gluten free food in a non-gluten free kitchen.

    Do you know if you will be in Kansas City, Missouri or Kansas City, Kansas?
    There is a pen store at Crown Center Shops in KCMO.

  5. Mezzie Learns says:

    Last year I went to that pen store! I’ll be on the Missouri side, and I have been to Jack Stack which was amazing. I went back twice! I’m hoping I get the same hotel I did last time which is connected to the pen store; there are so many of us that we fill up six hotels, and it’s really luck of the draw. Thanks for the tips. 🙂

  6. truewordsfoundhere says:

    Oh cool! I’m glad you got to go to The Pen Place. I am prejudiced, but KCMO is the best KC. It’s the one that is meant, usually, when KC is talked about. The Kansas one is referred to as KCK.

    Did you ever go the the Plaza (Country Club Plaza) while in KC?

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