When Band-Aids Aren't Enough

The first woman up in my Real Women Wellness series, is Alicia. She had a very rough year discovering she had an autoimmune disease. She and I sat down to discuss her journey and how her lifestyle has changed, as a result of the autoimmune disease.

Lauren: Thanks for joining me today, and for your willingness to share your story with others. I know I appreciate it, and I’m sure everyone reading this does, as well. You mentioned you had a rough year discovering you had an autoimmune disease.

I’d love to hear about how you discovered you had an autoimmune disease.

Alicia:  I started getting strep throat about every six weeks. I was so confused why I continued to get strep throat, since i was never around children and changed my toothbrush constantly. Their only solution was to remove my tonsils. So that is what we did.

A few months later, I got a rash on my chest and arms. It was so unbearably itchy that I would scratch it until it bled. I went to a dermatologist and he didn’t know what it was; he said he had never seen something like it and gave me a steroid cream to take.

I felt like this was a band-aid and wasn’t getting to the root of the problem. He also gave me oral steroids to take, which started to calm it, but it never went away all of the way. He decided it was best to give me steroid injections.

I didn’t feel like an anxious person until I was on these steroids – I had all this energy but didn’t know where to put it.

Steroids are given out so regularly and are such a terrible thing.

Looking back I’m wondering if the strep throat didn’t manifest itself in another way, which was my now my rash.

Lauren: What were your next steps?

Alicia: My dermatologist then sent me to a Rheumatologist, who in his 70’s (as were all of his patients). He definitely didn’t take me too seriously because I was in my mid-twenties at the time. He was extremely dismissive and said: “the only thing we can do for you is continue on the steroids.”

Lauren: You must have felt so frustrated and alone. What were your family and friends saying?

Alicia: My family and friends were very supportive. Some thought I might have lupus. Which is a sort of catch all diagnosis since there are so many possible symptoms. My mom started going on Google to look up autoimmune diseases. She found a doctor at Penn who diagnosed me right away. She is leading doctor in the U.S. for my specific autoimmune disease. Unfortunately, by this time, I had lost a ton of weight, and I was literally shrinking.

I was on 80mgls of Prednizone a day and an immunosuppressant. I was on the same dose that someone who would have just gotten a heart transplant would have gotten…

I had no immune system and was scared to go anywhere. I was worried I couldn’t fight it off whatever germs I may come across. There’s a whole social and mental aspect to an auto-immune disease. I felt so isolated.

Your body is literally destroying itself. My sister came and stayed with me for a month to help me physically and emotionally.

Lauren: Did you change your diet at all during this process?

I stopped eating gluten when I was getting diagnosed – I respected her for diagnosis, but the doctor never touched on diet, which I found shocking, but I have since learned that doctors don’t get any sort of nutrition background. I like to be in control of things, but I felt so out of control.

Lauren: Did you do any of your own research to connect the two?

Alicia: I started reading all of these books about autoimmune diseases and the more I read, the more I thought this could very well be connected to diet.

I removed gluten, soy, dairy. The change was a dramatic.

My rash went down, and I had “good” energy. I was calmer.

Eventually, I had weaned off of these medicines, but the majority of my doctor’s patients stayed on the depressants for most of their lives and I didn’t want that for myself.

Everything was under control for a few years, and then I worked it back into my diet and everything was OK but then about 2-3 years ago I started getting my rash again.

My autoimmune disease progressed with new symptoms the worst of which was severe muscle weakness. I literally couldn’t put my arms above my head. I had to bend over in the shower to wash my hair.

It was a super stressful time in my life, and I went back to that doctor. I tried to remove gluten again, but she wanted to put me back on steroids.

Lauren: What did you decide to do?

Alicia: I didn’t know this, but the immune depressant can cause huge birth depressants and you have to be off of it for 2 years before you can even try to get pregnant. I didn’t want a medical issue to prevent from doing what I wanted.

I wanted to have control of my life, so I decided to not listen to the doctor, and went off of gluten and stayed off steroids.

I now have my life back. I still have issues but know how to manage them better on my own.

Between the strep and the autoimmune disease, – gluten, diary, toxins, whatever it is, it doesn’t like my body. There is truly a reason why these things happen and if we can figure it out, there might be a better way to heal than medicine. It’s so frustrating and hard when you have to figure these things out on your own.

None of the doctors ever thought things correlated. I felt like my body was trying to tell me something.

Lauren: How did you work through all of this?

Alicia: I barely did.

My sister and I own an insurance agency together, so my sister had to do my job for the most part, and it was extremely hard on her. I worked as much as I could, when I could.

She understood she didn’t want me doing the work if I wasn’t feeling up for it.

It’s so hard on everyone around.  It was hard on my parents and sister to see me going through it because there was nothing they could do to help.

It was especially hard on my now husband because he was watching me whiter away in pain on a daily basis. There were times where he had to blow dry my hair. One night we had a Christmas party to attend and he surprised me with an appointment at Dry Bar to get my hair done.

He had to walk me into the doctor like I was 90 years old. I felt like such a burden to everyone around me.

Lauren: How do you cope with it now mentally and physically?

Alicia: I work out on the elliptical, but it can be strenuous on my joints, so I have to be careful.

I have the calm app I use at night, or on the train to calm down & meditate. I need to make sure I make time to rest and sometimes that means saying no and not being able to do everything that most people my age can do.

I walk 7-8 miles a day to clear my head and spend time with my dog. I’ve recently been getting back into yoga after not having the muscle strength to do it for a few years.

Lauren: What is your advice for anyone going through an autoimmune disease?

READ. As much as you can. Even if you don’t have a specific diagnosis there is a ton of credible research and information out there for autoimmune diseases as a whole with a lot of great advice and ways to start healing your body naturally. Of course you should still see a doctor and may need some medicine to help get your symptoms under control in the beginning (and that is ok) but don’t settle for that pattern for the rest of your life. It isn’t easy. It’s a struggle every day but it can get easier and better once you figure out the diet and lifestyle changes that help you heal.

Lauren Young