How To Live — and Live Well — With Lupus (2022)

If you are diagnosed with this autoimmune disorder like I was, you’ll probably have to make some difficult changes. They are worth it

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After four years of “What is it?” and three years of “What should I do next?” I have finally achieved hard-won peace with my Lupus diagnosis. As I was, you are probably tempted to see Lupus as the beginning of so many endings, but it doesn’t have to be. You can choose what Lupus means to your life. There are good odds that you can even control most of your short and long-term effects if you act quickly and with understanding.

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Don’t take this step for granted. Lupus looks like so many other diseases — autoimmune and others — that it is frequently misdiagnosed as other ailments. In my case, it took over five physicians more than four years to pin it down, and the winning doctor found it during a random hospitalization clear across the country.

If a general practitioner suggests that you might have an autoimmune disease, a rheumatologist can typically test for the specific variation through simple labs: blood draw or urine. X-ray or biopsy might be required, but if you have “Super Lupus” as I do, your indicators will light up like Christmas: low white blood cell count, low red blood cell count, low hemoglobin, and high anti-double-stranded DNA antibodies (the agents your immune system is using to attack you). Here’s a point of reference. On July 30, 2018, my anti-dsDNA level was 141 IU/mL (units of bad stuff per milliliter). The standard range is less than or equal to 9.9 IU/mL.

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Don’t choose just any rheumatologist, and don’t immediately agree to see the one your general practitioner recommends in your area. My first appointment was via referral with an arthritis specialist 30 minutes from me. The wait time was two months, and the roof of my mouth and throat were being eaten away in a flare. I certainly would have died if I had not gotten on the phone and called the nearest specialists, 90 minutes away at MUSC in Charleston. By the time I got there, I hadn’t eaten in seven days and I had to be hospitalized immediately.

My first doses of Imuran and Plaquenil relieved my symptoms in an instant, but by then my whole body was racked with pain and I was only able to eat pureed foods. What does this teach us? As soon as you find out it’s Lupus, go to Google (or any search engine) and search out the closest Lupus specialists and support groups. You may have to drive for a while to get the attention you need, but they do know exactly what to do to save your life if your situation is emergent. They also know the treatment options that will best improve your quality of life.

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This is going to be hard (maybe), but I can almost count the number of pepperoni slices I can eat before the hives begin. (That’s one of my flare symptoms brought on by one of my favorite foods, pepperoni pizza.) Your rheumatologist will likely say that you can eat whatever you want — in moderation — as long as you take your medicines, but you shouldn’t. Why not? Simply put, Lupus is a disease empowered by inflammation, and what encourages inflammation in your body? That’s right: red meat, dairy, and oils.

I didn’t take this leap alone. I was encouraged to drop meats, dairy, and oils by Dr. Brooke Goldner of Goodbye Lupus. Before I was prescribed medications, I had no idea where to begin, so I figured I had nothing to lose. The book cost me $10 on Kindle, and it’s the best $10 I’ve ever spent. On occasion, I cheat with a few slices of pepperoni pizza or a Taco Bell taco, but I know that after 3–4 ounces of red or processed meat, or 3–4 vegan sandwiches with cheese, I am going to pay a price. My commitment to a mostly vegetarian diet — with a little fish — helps to keep my medication dosages steady and low.

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I’m surprised by the number of Lupees who won’t take their medication. In a Lupus research group last year, about 50% of us admitted to skipping doses or foregoing Lupus medicines altogether due to fear or in favor of homeopathic alternatives. I cannot stress enough how much I oppose this choice.

Of course, my situation was a dire one. At the height of my last great flare, it took about a week of hospitalization, a tapering prescription of steroids, five months off work, and extended bed rest to get my Lupus under control. In the interest of keeping those huge flares at bay, I take Imuran and Plaquenil according to my prescription. I don’t stop taking it at the weekends to “give my body a rest.” I don’t skip it on Sundays “in honor of God’s sovereignty.” I take it every day as prescribed on the bottle.

This commitment to taking the medications does not stop me from having the occasional mini-flare, which can be brought on by cheating on my anti-inflammatory diet or stress.

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We all have different flare triggers, but I want to address the one I believe is the hardest to control. An exercise regiment can be adopted. You can just follow a 10–15 minute video on YouTube once per day. Your diet can be changed. If you cut back on fast foods or buy more steam-in-bag vegetables from the frozen aisle, you will see some benefits. But stress — and its accompanying symptoms like restlessness, exhaustion, anger, etc. — is so invasive and sudden.

It’s particularly difficult to manage stress when your life is in a pressure cooker of circumstances: a challenging job or lack thereof, a difficult family situation, a season of financial struggle, etc. I get it. We have to work. We have to make money. We have to pay the bills. We have to keep the family together. However, we also have to accept that if we don’t manage our daily stress, our Lupus may very well kill us.

This step, reducing stress, is where I struggle every day. I made some big changes that hurt initially to reduce my workload. I left school administration, for example, and I think I’m just getting over that. (It was three years ago.) I stopped working evenings and weekends (for any reason), which cut back on creative endeavors that I enjoy (writing, producing vlogs, music, etc.). More recently I left my in-person teaching position for an online one to save myself the stresses of mitigating COVID-19 exposure until I can be vaccinated.

After all, I am immunocompromised, and COVID-19 is not like the suite of seasonal sicknesses I have caught at least once a year since I returned to the classroom in 2018.

My decision to continually and intentionally back out of stressful situations is costing me what I still think are excellent opportunities to do great things, but I cannot expect to do even good things if I am dead. So, there you have it.

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My son asked me yesterday if I could total up all the money I have spent or lost as a result of Lupus since my diagnosis, and we stopped counting around $100,000. Even with health insurance, the doctors’ appointments, the medications, the loss of salary, the travel expenses, I mean… it has cost me. But what have I gained?

I’m still here for my teenaged boy. I’m remarried with a beautiful 16-month-old baby girl. I’m in more control of my work and family time. I eat well and when I’m supposed to. And as a bonus, I finally found a lip ointment that keeps my lips hydrated: Aquaphor. Who had time for that before?

I encourage every Lupee to see the bright side of the changes that must be made to enjoy a life that is impacted by this autoimmune disorder. In order to do that, certain decisions must be made, certain actions must be taken, and certain things must be changed, but you can do it. You can find new ways to approach life that are not only equal to what you enjoyed before. You might find yourself more willing to do what must be done to make your life better.

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