Say Hello to My Little Friend: Living with an Auto-Immune Disease
Learning you have an auto-immune disease, without trying to be overdramatic, can be devastating. When my symptoms first began, I thought, “What the hell is going on with my body and how do I make it stop?” Granted, at the time of my diagnosis I was the mother of two young children, which really is code for exhaustion, but even then, I was beyond the normal tired. More puzzling symptoms began to pop up: my arms felt weak and were difficult to lift over my head, my face, neck, and chest looked like I’d spent two weeks in the blaring sun sans the SPF, and my fingernails hurt and were sensitive to touch.
I remember the day it was brought to my attention that maybe I should check this out. I was at my daughter’s pediatrician for her check-up. The doctor walked in, took one look at me, and asked if I was feeling ok. I told her I’d felt better but again chalked it up to being the mom of a 5- and 1 1/2-year-old. She looked me square in the eye and said, “You better see a doctor.” Armed with a heavy arsenal of anxiety, off I went to my primary health specialist.
After meeting with five different doctors (an internist, two dermatologists, two rheumatologists), oodles of blood tests, and the dreaded feeling something was seriously wrong, I finally had my answer…or so I thought. Originally, I was diagnosed with lupus. Since the worldwide web had made its debut a few years before, I dialed up to do some research. Of course, what I mostly focused on were the sites that summed up “what could happen to someone with lupus.” My army of anxiety began battling the enemy of fear. Most sites talked about the chronic symptoms and possible treatments available for lupus, but I laser-focused on the line that said something to the effect “lupus can lead to death.” It turned out though the doctor believed I had cutaneous lupus, which is mostly relegated to the skin, as opposed to systemic lupus, which can affect vital organs and is often more dangerous. I felt some relief, though not enough to stop searching for more answers and treatment.
On a visit to my second dermatologist, he said, “Actually, I don’t think you have lupus,” (insert the angels singing). What a relief…I don’t have lupus, hallelujah!! He followed this up with, “You have dermatomyositis.” I have dermatomyowhat? He explained that dermatomyositis is similar to lupus, but because of the pattern of my rash, as well as my muscle weakness, the two can be confused.
For you science nerds, www.mayoclinic.org defines dermatomyositis (dur-muh-toe-my-uh-SY-tis) as,
“an uncommon inflammatory disease marked by muscle weakness and a distinctive skin rash. The condition can affect adults and children. In adults, dermatomyositis usually occurs in the late 40s to early 60s (I was 36 when I was diagnosed). In children, it most often appears between 5 and 15 years of age. The estimated incidence of dermatomyositis is 9.63 cases per million people. Dermatomyositis affects more females than males. The cause of dermatomyositis is unknown, but the disease has much in common with (other) autoimmune disorders, in which your immune system mistakenly attacks the body’s tissues.
There's no cure for dermatomyositis, but periods of symptom improvement can occur. Treatment can help clear the skin rash and help you regain muscle strength and function.”
This doctor then pulled out his encyclopedia of skin diseases to show me some of the worst cases of dermatomyositis rashes you would never want to see. To top it off, as he was leaving the examination room, he looked over his shoulder and said, “I hope you don’t end up in a wheelchair one day.” While his diagnosis may have been right, I never went back to Dr. Compassionate.
Unfortunately, this appointment led to so many other doctors, countless prescriptions, holistic healers, the blood type diet, gluten-free, sugar-free, alcohol-free (that was my least favorite); basically, you name it, I’ve tried it. And today, 22 years after being diagnosed, my immune system is still kicking my ass. It causes my skin to be red, though not as bad as when I was first diagnosed, it’s there. I have other classic signs of dermatomyositis; heliotropic rash which affects my eyelids, redness around my nose, forehead, and chin, and Gottron's papules, a flat red rash over my fingers, knuckles, elbows, and knees. In addition to the symptoms and treatment, I also am highly sensitive to the sun, so anytime I go out it’s with an SPF hat, long sleeves and pants, and plenty of sunblocks. I figure 20 years from now I’ll have the skin of a 30-year-old (hahaha…wishful thinking).
However, the symptom to beat out all the symptoms is my unbelievably, wake me up out of a sound sleep, itchy scalp. Now you may be thinking something along the lines of, “why doesn’t she just wash her hair more,” or, “she shouldn’t wash her hair as much,” or “just try some Head and Shoulders.” Well, I do I wash my hair regularly and no, I don’t have dandruff, but I do have the kind of itchiness that I would classify as painful. It’s not a particularly common symptom of dermatomyositis. I have the kind of itchy scalp that has me on 2 different medications, a nerve blocker, an immune suppressant, a nightly sleeping pill, and three times a month intravenous infusions of immune globulin, lasting 4 hours each sitting, to quiet down my scalp.
A few months back I started to do some reflection on my disease. I have lived with it for over 2 decades, and while I’ve learned to manage it, I wondered if I ever really accepted it. It has been easy to try to brush it off, or on the contrary, allow the anger and sadness I’ve felt to take over at times. So I did a little soul-searching and realized I’ve spent so much time feeling angry, and as much as I hate to admit, sorry for myself for having dermatomyositis. And I’ve spent so much money on pills and potions, functional medicine doctors and gurus, all in hope that SOMETHING would make it go away. What I haven’t spent nearly as much time on is accepting that this condition is a part of me. It’s not fun or enjoyable, and it certainly isn’t something I tend to bring up at dinner parties, but it is one of the things that makes me uniquely me. At this point in my life, I prefer to imagine my condition like an old friend who no matter what, is going to stick around for the rest of my life.
I have found that in accepting my condition I’ve also relaxed more about it (a key factor in dealing with any inflammatory issue). Sometimes I meditate, other times I drive in the car without any distractions trying to picture what my “friend” might look like, and other times, like an old (annoying) friend, I want to tell it it’s being a pain in my ass, but mostly I lean towards gratitude for what I do have…namely strength and resilience. Even in times where I haven’t felt well or been on a new medication that might make me lethargic, I’ve continued to be dedicated to my physical fitness and healthy lifestyle, including clean eating, minimal alcohol, and getting at least 7-8 hours of sleep each night. I’ve built my career, as a personal fitness trainer, where I empower my clients to take care of their bodies, and as a health and life coach, educating and guiding my clients to be the best version of themselves.
I don’t think I just fell into being in the helping profession. Helping others has set me on a path of knowing how important it is to take care of oneself…body, mind, and spirit. On the contrary, I’ve witnessed first-hand what happens when someone does not make their health a priority, so I couldn’t imagine where I’d be if I wasn’t diligent about eating right, exercise, getting good sleep, and trying to keep my stress at bay. I’m not perfect on any of these fronts BY ANY MEANS, but I’m grateful to have the knowledge that keeps me on course.
Living with a chronic condition is difficult but living in a state of anxiety and anger because of said condition is a recipe for disaster. Instead, I’ll embrace my little friend, nurture our relationship, and hope that together we live happily ever after.