What Having an Autoimmune Disease Has Taught Me


It was a bright sunny day and I was brought to my knees. I had moved an hour and half away from my hometown and was at home with my children ages 4 and 5. I had chronic migraines and these new revelations about my marriage made me fall to the floor. I was asking God why this was happening and to help me. I couldn’t take anymore. Just like that I felt like things would get better. They did for a little bit. I had physical and emotional strength to get through the next few days. This didn’t last and just when I thought things couldn’t get any worse, they did.

I had lost 25 pounds in six weeks. I had diarrhea every morning and only extra strength Immodium and a bowl of rice would stop it so I could get on with my day. I went to a gastroenterologist who told me that he would like to do a test because I could have a rare disease called Celiac disease. He said, “I really don’t think you have it but I want to do the test just in case.” He was stunned when it was found that I had it. That was 16 years ago and I was also diagnosed with Hashimoto’s Thyroiditis at the same time. This explained the wonky test results over the years. I had two autoimmune diseases and no one explained what an autoimmune disease was to me.

The chronic migraines were monthly but progressed in frequency and intensity when I was pregnant with my first child, a honeymoon baby. After my daughter was born I still had migraines and when she was six months old I found that I was pregnant with my son. I didn’t think the headaches could get worse but they did. I used Imitrex in my third trimester and was given narcotics throughout the pregnancy. I was worried that he would be born addicted to these drugs and fortunately he wasn’t. I was advised not to nurse him so that I could take antidepressants to help keep the headaches under control. As the years went on, I was in bed 5 out of 7 days a week and had taken every prophylactic and abortive medication available. My sleep schedule was abysmaI and I also suffered from fatigue. I went to very reputable headache and pain clinics and was put on medications including Fentanyl for my joint pain and peripheral neuropathy. The Fentanyl alone cost $1000 a month and I was on other medications on top of that. It was breaking our bank account. I would have much rather spent that money on something else. Even though these treatments (biofeedback, botox, stress reduction) were innovative at the time, I didn’t get any relief. It wasn’t until I went through a divorce and learned that stress and hormones were my primary triggers that I found some relief.

I knew the definition of autoimmune disease but didn’t understand all that it encompassed. I had learned bits and pieces about it over the years but not one of my doctors ever explained it to me, not even the one I was married to! I was told to go on a gluten free diet but no one explained how gluten causes inflammation and how it affects the gut of someone with celiac disease. So I was gluten free on and off for 14 years not realizing the damage I was doing to my gut and immune system.

It was not until I became involved with LIVEFIT WITH LUPUS and met people with other autoimmune diseases (AIDs) that I began to fully understand AIDs, and their effect on the body. I’ve learned how the immune system works when the body contracts a disease, how it runs other organs and when it is out of whack how it can really mess things up.

Having one autoimmune disease much less three, I also have Fibromyalgia, have taught me that I’m resilient. That I can deal with a surprise change in plans if I’m not feeling well. That I can still accomplish something whether it be intellectual or spiritual when my physical body isn’t willing. That I am much more than my health and my mood and that my self worth doesn’t come from what I can or have accomplished and not to measure myself against someone else.

I became a health coach because I wanted to help those with autoimmune disease “navigate a new normal” in their lives. It can be overwhelming when you are first diagnosed, but it isn’t the end of the world. Just the world as you know it now. Autoimmune disease affects 50 million people and there is no cure for it, but I’ve learned to live a full and active life despite of it. I look at my life as a beautiful landscape that has some hills that you come upon once in a while. When I was diagnosed a fence was built around me and I was told that I can only roam within it but I can still enjoy the sunny days and the lovely view. Sounds depressing, right? It isn’t. You see, there is a gate in this fence and I can venture out if I want but there will be consequences. So, it’s up to me if I can live with those consequences once in a while, but I can still enjoy the sun and the beautiful view anytime I’d like. 

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