Mystery Diagnosis and EDs

I usually don’t talk about the really personal stuff. I’ve spoken about my depression and anxiety and my attempts at better self-care. I’ve written about dealing with death. I’ve mentioned, occasionally, my recovery and progress.

About seven months ago (back in May), out of the blue, I developed an extreme skin sensitivity. I thought it was an allergic reaction–turns out it’s an autoimmune condition known as Leukocytoclastic Vasculitis, or LCV. Since May, I’ve been to three different doctors, on five rounds of medication, had 15 vials of blood drawn, a chest x-ray, and a biopsy. My bloodwork is normal, which is both great (cause nothing’s wrong with me) and terrible (cause nothing’s wrong with me.)

Initally, I was told to wait it out. That the symptoms would go away. And they did, for about two months. This most recent flair, however, devastated me. The pain in my joints made walking difficult–which doesn’t help when your Day Job is walking around and moving. My ankle swelled to the point where I was on bedrest for four days. My skin went from ant-bite pain to continuous electroshock agony. Seriously, even my dog’s ear brushing my ankle felt like death.

I became so physically sick, I couldn’t eat, I couldn’t sleep. Luckily, I’d managed to get in with a doctor right after Christmas. I’d have been hospitalized otherwise because there was no way I could “stick it out” until May or February. My mother had to drive me to the appointment because I couldn’t.

I’m doing better now. I still hurt, but not nearly as bad. In dealing with my diagnosis (as it is), I’ve run the course of “Why me?” and “This isn’t fair” to “Why can’t they figure this out?” and “I just want to look normal.” I want to wear my new swing dress and my new heels, but I can’t because my ankle is a mess and my legs, a horrorshow.

I’ve heard “It could be worse” more times than I’d like.

Yes. It could be worse, but I’m entitled to how I feel. Just because it “isn’t worse” doesn’t mean I can’t be upset about it. It doesn’t negate my lack of self-confidence, it doesn’t mean my pain is less real. My skin is on fire. My blood vessels are combusting. So far, these last three months have been the worst I’ve endured in my life. Combine my not knowing if the vessels blowing in my skin will soon be the vessels blowing in my organs on top of seasonal depression and anxiety, and well… I went dark.

I’ve never been that level of terrified before, and I never want to feel that way again.

And then you level “It could be worse” with “Well, you didn’t eat for four days, so you’ll lose weight. Whatever works, right?”

Wrong.

Prednisone is a great drug.It’s saved many of my friends. It tastes like hell, but it’s the “cure” for LCV. The downside to prednisone: bloating, weight gain, increased appetite, mood swings, irritability, etc. My GP suggested I weigh myself every day to curtail the symptoms, which, as a gal in recovery from an eating disorder, is definitely a mindfuck.

I have a tendancy to disregard how healthy/strong I feel in favor of a number on a scale.

Like many girls, I developed my ED in high school. I wouldn’t binge and purge, I just wouldn’t eat. And then I’d go to band practice after school and pass out on the field because I didn’t eat. They’d force feed me Gatorade, but no one really did anything. As a result, I have to make myself eat. I have an app on my phone to log what I put in my mouth because if I don’t, I won’t eat enough, and I want to make sure what I’m eating is healthy. I make it a goal to eat every 3-4 hours, snack or meal.

I’ve been working on my weight and getting healthier on and off. I’d been doing well until the first round of prednisone, wherein I packed on 15 pounds in addition to what I’d lost.

When I became sick, I fell into the cycle of “you’re sick because you didn’t eat and now you’re sick because you did.” For the first time in my life, I actually made myself throw up because I was convinced I’d feel better. It was horrific, and then: “Well, you’ll be skinny. Whatever works.”

Since they increased my dose, I’ve gained 4 pounds in three days. I know it’s bloating. I know it’s the medication. And yet I still feel deeply upset with myself. Before the increase, I was maintaining, if not losing. I’d worked hard to keep myself healthy. Seeing the numbers increase shook me, compounded with the echo of “whatever works.”

Last night, while making a protein smoothie with a new mix I’m trying out, I was given a lecture about what I’m eating and how many calories I’m consuming. It wasn’t a positive chat–it was a personal attack.

Food shaming happens frequently in this house, and it’s one of the most disgusting things I’ve heard. When I first started trying to lose weight, I joined Weight Watchers. The moment the leader told me that “Nothing tastes as good as skinny feels,” I fucking quit. My goal is to NOT feel guilty about making the choice to eat.

Sometimes you just need a piece of chocolate. And that’s okay.

I haven’t been able to do much the last month: I can’t go to the gym because I can’t walk for more than 20 minutes without pain and climbing stairs is out of the question. My knees swell. I miss the gym. I miss doing a lot of things. So I focus instead on eating well: protein and veg at every meal, healthy snacks, lots of water.

And yeah, maybe last night I had pizza for dinner. It’s not going to kill me.

But the toxicity will. I’m at the end of the seasonal depression. I made it through. I’m hoping my LCV will soon get under control. I have to relearn to deal with food in a safe and healthy way.

It’s an unfortunate fact of life that I’ll always be “in recovery.” I’m never going to wake up and suddenly be free from my ED. Maybe it won’t have to be such a conscious choice for me, but I’ll always need to be reminded to eat. If my LCV is chronic (which I’m thinking it might be), then I’ll always need to watch my sodium to prevent flares.

Maybe one day I will wake up and my LCV will be gone. It happens. It’s possible. Right now, I’m dealing with the emotional fallout of suddenly having an autoimmune disorder. I’m ignoring the people who tell me I shouldn’t feel the way I do because “others have it worse.” I refuse to let myself be food shamed.

If I’m 100% honest, I’m not sure how to fight all of this, but I know I’m not alone, and neither are you. I’m not asking for sympathy; I’m looking for catharsis. Fight Things is hard. Talking about them makes it a bit easier, for me, enduring this trial, and hopefully for you, if you’re going through something similar.

You’re allowed to feel however you feel. There’s nothing wrong with being upset at upsetting situations. Make sure self-care is your priority.

I’m going to make a protein shake, take my meds, and do something I love.

 

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5 Comments

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5 responses to “Mystery Diagnosis and EDs

  1. Part of me doesn’t want to joke, but it’s what I do with uncomfortable situations: claim the condition is vampirism and run with it. I’d consider this a social experiment. Document what happens.

    On the serious side: This is balls. I can’t speak to the eating disorder because I don’t have that experience, but I can imagine its a horror show combined with the side effects of the prednisone.

    Do continue talking about this. You’re a brave woman with a significant amount of brass, and (while I’m googling this to make sure) whatever doesn’t kill you makes you immortal.

  2. You are brave. You are stronger. And far much braver, stronger, and all around BETTER than those who choose to shame you. ❤

  3. Jean

    Been there-sarcoidosis or “lung crud”-done that-long LONG term Prednisone, so if you need to talk, I’m here. The people who tell you that others have it worse generally have never had any serious illness. They can STFU now. As to food, you eat what helps you and don’t eat what you don’t want. If there’s anything I can make you, let me know. I’ll be here.

  4. You are very brave for sharing your story. I’m sorry that this has happened to you. But I do agree with the other comments, you are brave.

    And you have us, that love you and support you. I am here if you need anything.

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