Let’s normalize talking about health issues

For the last year or so, I’ve been dealing with what can most easily be described as an autoimmune disorder. (Science refers to it as auto inflammatory, but since the inflammation is an immune response, it’s just easier to explain that way).

Experiencing extreme inflammation does a number on your body. My particular issue is skin related but unseen. Extreme inflammation is not fun.

Over the last year I’ve had funny looking lab results, specialists visits and multiple procedures. I’ve also lost a considerable amount of weight, unintentionally.

As an aside, let’s talk about weight loss. I’ve lost about 75 lbs from my highest weight, 40 of it in the last year. While I feel better, it’s taken a toll on me mentally. I’ve been overweight most of my life, easily for 35 of my almost 45 years. While I’m still considered overweight, I weight 50 lbs less than my license says and when people see me, their first remark is about my weight. In the height of my illness, this was a problem. It’s still a problem. It used to be a problem because my weight loss was completely due to my immune system issues. There were days when I was too weak to get out of bed and no desire to eat anything. Eating became about calorie intake only. Remarks about it make me think people are fat phobic, but lack of comment about it is weird.

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And while they thought it was the Hidradenitis (HS), they also wanted to rule out other causes. No one ever said cancer, but I’m smart enough to look up tests and procedures to know they we’re looking for lymphoma.

Because so many people battle with weight loss, it’s made it even more difficult to talk about the impact my abnormal weight loss has had on me because I understand the struggle that is normal weight loss. But that’s why there are therapists, right.

Along with the weird lab results came severe anemia, only discovered when I had a pre-op physical. One treatment for my disease is to remove the chronically inflamed skin and let new, better behaving skin grow in it place. It’s invasive, painful and not quick. But I was so anemic that the surgery had to be canceled. Luckily, my dermatologist had already sought approval for a biologic course of treatment. Although they aren’t sure if the source of the anemia is the HS or something else they haven’t found, I consider it a blessing. The surgery recovery was 4-6 weeks, in patient. While not my first choice, so many other to treatments had failed that I was willing to do it. I just knew I couldn’t return to work post-pandemic with my skin in the condition it was, I was going to spend the summer at Bayview.

Now that they seem to have found a treatment that is working, I’m in a better place. I’ve come to terms with the new wardrobe I have to invest in, and the anxiety of going back to my old eating habits, gaining the weight back and none of those clothes fitting. (That anxiety was crippling for a while, but I got tired of looking like I had on someone else’s clothes.)

What the last year has taught me is to listen to my body. When it says sit, I sit. When it says dump your schedule because we can’t get out of bed, I dump my schedule. I’m working to get back in the gym and make conscious decision about eating patterns. And I’m looking forward to my new clothes.