May is Lupus Awareness Month. I have Lupus.

May is Lupus Awareness Month. I have Lupus.

The word “lupus” literally means “wolf” in Latin. Lupus is a chronic autoimmune disease that can affect every part of the body, including skin, joints and other major organs. In other words, the “wolf” can “bite” you anywhere.

Anyone with an autoimmune disease understands the fatigue, depression, and myriad of other health issues that go along with it.

Healthline.com reports, “If you have lupus, protecting yourself from sun exposure is an essential part of managing your condition.” Don’t forget to wear SPF/UPF protection clothes along with your daily sunscreen.

If you don’t have sun-protection outfits, then it’s an opportunity to go shopping!

Coolibar is a great website with lots of cute sun protection items to choose from.

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Also, Lilly Pulitzer has adorable sun-safe tops and outfits.

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Completely covered and in the shade does NOT mean you can’t get your tan on. I like Versa Bronzing Mist. You can actually get a Versa Bronzing Mist spray tan at Tommy’s Tanning locations and then maintain the “tan” by purchasing the individual bottles. I mean, look how I stayed out of the sun by day, but looked like I’d soaked up the sun by night. Ok, I over-did the spray tan just A TAD. But you get the idea–avoiding the sun doesn’t mean avoiding your life!

img 4550 2 May is Lupus Awareness Month. I have Lupus.

I was diagnosed with Lupus of the skin in 2016. It’s technically called Subacute Cutaneous Lupus. One of the symptoms is a nasty rash. The rash I developed covered my entire body, head-to-toe. And trust me when I tell you, this picture is TAME. I don’t want to gross you out, but it got much, much worse.

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While doctors were trying to diagnose my condition, I was on round after round of steroids. Not to mention a 25 pound weight gain from those damn steroids along with serious autoimmune lethargy.

But after lots of testing, a biopsy and an eye exam, I was cleared to take a medication that works to control Lupus, Plaquinel.

Lupus caused me to go through serious bouts of depression. I’m not gonna lie, I was sad, scared, avoided going out and cried. A lot. But with care and help from friends and family and excellent doctors, there’s a light at the end of the tunnel.

At my most recent Rheumatologist visit, my blood work results show my Lupus isn’t getting worse. In other words, the Plaquinel is keeping it under control. Occasionally, I have to use a steroid cream for minor rash flares.

img 21191 May is Lupus Awareness Month. I have Lupus.

Lupus is a very tricky disease to diagnose because the symptoms mimic so many other conditions. That’s why it’s important that you see a specialist as soon as you think you may be showing signs of Lupus and to know your family history.

I didn’t find out until after my beloved grandmother died that she had Rheumatoid Arthritis. So autoimmune disorders run in my family. My grandma always looked fabulous. That’s another thing about autoimmune diseases, you can’t always tell someone’s sick by looking at them. So I’ll say it again, know your family history! 

scan0013 May is Lupus Awareness Month. I have Lupus.

For years I chalked up my occasional skin rashes–that always seemed to coincide with allergy season–to eczema. My skin would break out if I got sick and flare-up under stress. It always went away after a few days. But once the rash became chronic I went to a Dermatologist first, then a Rheumatologist. I continue to see both of them on a regular basis.

I’ve also experienced hair loss which started in my 30’s (I’m 45 now.) I didn’t realize then that the hair and skin issues I was having through-out my 30’s were most likely Lupus. Hair is a big deal in our society. It can be devastating to lose it. So I created a YouTube channel, BlondieLocks, for anyone who needs faux hair for whatever reason–be it medical or cosmetic or both.

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I used to run marathons, but these days I’m walking and doing gentle yoga. Keeping track of my FitBit steps gives me a challenge that’s fun to try and beat daily.

My husband tells me to “trust the process” of what works for me: Weight Watchers, doctor’s visits, medication and being kind to myself. He’s so right. It IS a process. Nothing happens overnight. This stuff requires patience and I know it can be down right depressing at times.

Remember to smile because you have a lot of joyful living to do. Finding things to be grateful for everyday makes fighting an illness much more bearable.

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I’m finally getting my energy back. But it takes mental and physical dedication every day. Some days are better than others, and that’s ok. Just as long as you keep trying, you’re succeeding.

So if you have Lupus, keep seeing your doctors, stay positive, know your triggers (stress is a big one), take your medications and take care of your body as best you can. Also, shopping for cute clothes and spray tanning helps too!

And if you don’t have Lupus, but know someone who does, consider reading up on it or asking them about it.  You can find more information on Lupus at Lupus.org. It does wonders to know that people care.

Be well my fellow Lupi’s!

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More from Christine Lee
Comments

One Comment

  1. Christine, thank you for sharing your story. You are an inspiration to all of us. Have you explored using essential oils to help with some of the symptoms of Lupus or side effects of the medications. I would be happy to educate you on what oils can help with your muscle and joint pain, emotions and energy as well as the quality of oils you should use. Hang in there, we love listening to you in the morning!

    1. clee965 says:

      Yes I’ve used oils, cold-pressed castor oil, tea tree oil, emu oil, Trinity Botanicals and many others. They help when I’m not flaring. When I was in the midst of a major flare up, I used them too and they were soothing, but only Plaquinel has worked to keep Lupus at bay. I also take Dead Sea Salt baths and brought home ocean water from New Jersey when were at the shore…the ocean water feels good sprayed on my skin. I’m off steroids which were helpful and then made everything worse. Thank you so much for the kind words. xoxo

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