My healing story


Me, with a dastardly mustache at Durham Pride

Right now, today, I’m in great health overall. But I never forget that this is a gift, and something I have to work at every day to keep all my systems in check.

I have tried the western medicine approach to health, only to repeatedly wind up frustrated, made to feel that everything was in my head, and often told that nothing was wrong with me, even though every cell of my body was shouting out the opposite.

My journey to health really started when I stopped listening to what traditional doctors were telling me and started working with naturopaths and nutritionists.

For me, I began to feel that western medicine is FAR too focused on treating symptoms, not finding the cause of the problem. And that the first, and often only, treatment is relying on medication instead of helping the body heal on its own. This is not what works for me.

When I was little, I had a number of food allergies, and I’ve always had chronic eczema. A pediatrician had initially pinpointed some of the eczema to foods that I was eating. Avoiding those foods seemed to help keep my skin in check, at least until my parents and I moved to the ocean, and my health got worse again. I had been told I had outgrown my earlier food allergies. This time, we were told my eczema was triggered by humidity, and by dry air. After that, I always had a humidifier in the winter and an a/c in the summer. I spent a lot of time as a little kid covered up to help protect my skin. As a mermaid, I have always loved being in the water, even in the cold Atlantic off the Massachusetts coast. But salt water BURNS when you have eczema, and the only way I could stand to be in the water was to be coated with thick layers of Eucerin creme. I looked like a little ghost, but it kept me from screaming in pain in the water.

I grew up, and the eczema seemed mostly under control, but then I was thrust on a new health journey that started maybe seven years ago.

I started having stomach pain on a regular basis. Not just “ouch, my stomach hurts,” but needing to go to the hospital because I was in so much pain. I had ultrasounds, barium tests, was poked and prodded, blood tests…and told nothing was wrong with me. I have since learned that this just often means the doctor doesn’t know what could be wrong.

I went on the South Beach Diet for a while, and started eating lots of whole wheat products, and lots and lots of grain-based fiber. I lost weight, but my stomach was often really bloated. My stomach hurt a lot, frequently. (TMI warning!!) I often had diarrhea, and heavy rectal bleeding. I was getting hemorrhoids frequently, so going to the bathroom at all made me want to cry and scream. Or I would get constipated for days, and be in agony. I would often feel lethargic and mentally sluggish.

More GI tests, including a colonoscopy and an endoscopy. I was still told nothing was wrong with me.

At the same time, my skin started getting bad again, much more severe than it ever had been in the past. I began meeting with dermatologists, who just kept giving me different medications, none of which really helped a lot. I told them about my GI issues, but they never seemed particularly interested in those symptoms.

After months and months of feeling awful more often than not, I finally decided to meet with a naturopath. She listened to what I was going through, made me feel like she actually heard me (such a relief after all the previous doctors!), and put me on a strict elimination diet for seven weeks – no gluten, dairy, sugar of any kind, tomatoes, potatoes, corn or anything with corn in it, caffeine, peanuts. It was really challenging at first, but gradually, something started to happen again – I started to feel better. And then I started to feel better than I ever had before.

My naturopath suspected I had celiac disease, and when I started to add food back into my diet, I would have very strong reactions to gluten. I would get immediately bloated, all my GI issues came back, my skin issues came back.

I removed gluten from my diet four years ago, added everything else back in, and mostly felt good again. But some of my issues started to come back, and I began to suspect dairy as well, so I cut that out of my diet as well, probably three  years ago.

I was doing fine for a while again, when my skin started to really bad. Worse than it had ever been. It hurt to shower. It hurt to wear clothes. I couldn’t exercise because the sweat would make my skin worse. My hand developed open, weeping sores. My hand, my right hand, my writing hand, hurt so much I couldn’t hold a pen, I couldn’t make a fist. I was afraid I would never regain use of my hand. My scalp would itch so bad that I would scratch it until it bled. I couldn’t stop, I couldn’t help it.

I went to the emergency room. I went to urgent care. I got emergency appointments at dermatology. I was put on steroids, and on high-dose steroid creams. It would help, but my skin problems would keep coming back.

It was clear that dermatology was not the right path for me. I felt so frustrated, because they never once tried to identify what was CAUSING me to break out. They just gave me steroids to treat it. But I KNEW that something had to be wrong for my body to be doing this.

I went to see a nutritionist. She tested me for vitamin deficiencies. She put me on another elimination diet – still stay off the gluten and dairy, but remove all soy, all sugar, caffeine, eggs, corn & high fructose corn syrup, peanuts. I was put on high levels of vitamin D, lots of fish oil and other omega oils. I started drinking green smoothies on a regular basis. I had to keep a food and symptom diary daily.

I started to heal. I started to feel better and better, and more like me – without medications. My energy began to soar.

I have since found that I can’t tolerate much processed sugar. That high fructose corn syrup is poison for me. That soy makes my body unhappy. I can have corn, but I don’t have it often, and I can’t have it in large quantities. I still stay off gluten and dairy.

Today, I eat lots of good fats. I have green smoothies frequently, often as my dinner. I take vitamin D and probiotics. And doing this, I am healthier than I have ever been. I don’t need to rely on steroid creams on a daily, or even weekly, basis anymore. When I stray from my dietary restrictions, I pay the consequences, and my skin breaks out, and my GI issues start to return.

But I know how to get it back under control now. It can be hard and challenging sometimes to follow such a strict diet, but the rewards of feeling healthy and strong are definitely worth it.

 

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6 responses to “My healing story

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  5. I have a 2 year old daughter, she has alot of the same skin issues you have. She has been to the doctors more times than not. I have taken her off of eggs, soy, any and all types of nuts. I have a cream I rub on her most every night, it seems to help, but when I stray from the new diet her skin breaks out.

    After reading your blog I think I’ll try some of the same things and see what happens.

    Thanks for posting….and wish me luck.

    Raven

  6. This sounds so much like some of my own experience. I don’t have the same skin issues, but I definitely have a host of other symptoms that are NOT SUBTLE AT ALL. And it is brutally hard to get anyone to take them seriously or even listen to them at all. I am so glad to hear that you managed to find an answer. I am hopeful that maybe the process of doing my own elimination diet will lead me to some improvement as well. At least in part of the puzzle.

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