My journey: The isolation of an autoimmune disease

This is Part Five of my story. If you are just starting to read, please go back and start with:

Part One: A new view of food

Part Two: The start of my journey

Part Three: Malnourished in America

Part Four: Solving the gluten free puzzle

 

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The day that scared me most during this journey came in mid-September. I was sitting in a meeting at work when my ankle started to hurt. I remember leaning down to rub my ankle throughout the meeting.

The day before, I had been working on our landscaping, and I had spent some time digging. It didn’t surprise me that my right ankle would be sore from pushing down on the shovel.

The meeting lasted one hour, and during that time, the pain kept building. By the time the meeting ended, I couldn’t put any weight on my ankle. I took off my wedge sandals and hobbled to a couch in the long hallway on the opposite side of the building from my office. That was as far as I could walk.

I called my co-worker and told her about my predicament.

“I’m stuck out here on the couch, and I can’t make it to the office,” I explained, totally overwhelmed with embarrassment.

She brought me some pain killers and kept me company while I waited for the drugs to kick in.

By the time I got home, my foot and ankle had swollen up with a huge goose egg on the side. When my son got home from school, he said it looked just like his ankle looked when he had sprained it playing basketball. He ended up on crutches for two weeks with that injury.

The only problem was, I had not sprained my ankle.

And this wasn’t the only joint that was painful and swollen.

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About two weeks earlier, I had severe pain in my right shoulder. For several days, I could barely use my shoulder.

That pain subsided, but then it moved to my right wrist. I had to wrap my wrist in a bandage because it hurt so much. I couldn’t lift anything with my right hand or do simple things like open a jar or package.

Now, it was my ankle. I couldn’t walk for about three days after that. It took a couple of weeks for it to get back to normal.

I was angry and freaked out and scared.

**

I had read that people who get an autoimmune disease in their 40s are far more likely to develop other autoimmune diseases. In fact, people with celiac disease are likely to develop another autoimmune disease every 10 years. I knew that this type of joint pain and inflammation were symptoms of celiac disease. But I had never experienced it to this level. Joint pain and swelling also are the major symptoms of some conditions that I didn’t want to think about.

The joint pain and swelling continued moving through the right side of my body for about a month after that. The hardest part was not knowing where it might pop up or what joint might be affected.

In fact, this whole dimension of “not knowing” has been the hardest part of having an autoimmune disease.

I love hosting social gatherings and making plans with people. In fact, we host more than 30 people at our house every other Saturday for our church Growth Group. I still try to do as much of this as possible, but I’m always aware that I might have a “flare” on the day I’m supposed to do something that will derail my plans.

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When I do get a “flare” from celiac disease, I often feel an overwhelming sense of hopelessness. Sometimes, my digestive system is so messed up and I have so little energy that I feel like I’m 90 years old.

“How will I possibly live another 30 years if I can’t perform one of life’s most basic functions — digesting food?!”

“How will I be able to get enough nutrition to survive when I feel this way?”

These feelings of hopelessness are wrapped up in isolation because I don’t want to tell anyone how bad I feel.

“How can I tell people that I’m sick? AGAIN.”

“How can I tell my family that I don’t have the energy to do what they need me to do?”

“How can I let my husband down by becoming such a sickly person?”

“How can I even talk about this?”

**

Maybe you can relate. As I’ve shared this story, I’m amazed how many people have approached me to tell me about a friend, a family member or their own related struggle. Feel free to leave me a comment or send me an e-mail.

Tomorrow, I’m going to start talking about the diet that has helped me through this journey and how I radically changed what I eat! 

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