January 9, 2018 was a day that I will never forget. This was the day that changed my life as I knew it. That day left me asking, “Why me?”. While I knew who I was when I walked into the doctors office, I wasn’t sure who I was when I walked out. Ultimately I was going to become a different person.

My whole adult life I was always sun-kissed and tan. I loved the rays of the sun and the sand on my toes. There was nothing that could keep me from the lake or the beach. Then one day within minutes I was covered head to toe in horrible hives, blisters and welts. They eventually subsided within a few days. I went to the tanning bed once they cleared up completely and it happened again. I cancelled my membership. I went to the lake and noticed each time I went into the sun I developed horrible rashes all over. Each time they appeared a little different and I began to feel sick for hours. This also began to happen during short times in the sun; driving to and from work in my car with tinted windows. My face began to get horrible blisters all over and they lasted for several months. We did a skin biopsy at my office and I had an allergic reaction to the sutures. I literally became allergic to the universe. No joke. I also developed allergies to foods that I usually had been eating my whole life. I would run low grade fevers on and off for several months, I developed the Malar rash during the first week of developing the first photosensitivity rash. I continued to get the Malar rash daily for almost 3 months until Plaquenil kicked in. I still get the Malar rash aka “butterfly rash” but not as often. This one year journey has been a struggle but it’s a fight that is worth fighting despite the obstacles it puts me through each day. I look fear in the face every single morning when I wake up and walk in the bathroom to brush my teeth and look in the morning. I see it in my face when I notice my skin rashes and eye lashes missing. I see it on my face when the tears fall. I see it in the shower as the hair falls down the backs of my legs as the water washes it away in clumps.

The health care system is broken. Over the past year, I have been thrown into the health care system to a degree that I never thought I would be. These days, there isn’t a week that goes by that I don’t have to make some kind of phone call either to my insurance company, pharmacy or provider. Whether it’s to discuss how I will be making payments on my $5,000-per-treatment medication (on top of appointment and Cardiac testing/ procedure fees), or enduring insurance-approval headaches, there seems to always be something frustrating and difficult to take care of. Not to mention, all of these doctors and insurance offices are only open Monday through Friday 8am-5pm, which just happens to be right in the middle of my work week. Backwards? I think so. The amount of work I have had to put in just to maintain some kind of organization to my treatment plan could equal out to another full time job. There has got to be a better model out there, and it’s time to figure it out.

It never occurred to me until I was diagnosed with a chronic disease that has no cure and can lead to a handful of other serious conditions how important my health really is. I never thought I would have to spend my free time figuring out how I’m going to pay for a $9,000 necessary test, while also paying off my student loans. I never thought I would have to battle a disease that is so invisible it makes people second guess the fact that I am actually sick. Your health is the most important thing in the world, and you don’t realize it until you are being poked and prodded praying that the doctors can save your life.

While it is a terrible battle every day, I also have a force of amazing village people standing ruthless and strong to help me fight. They will never let me fall. They keep me anchored to my roots and remind me where I belong. They lift my spirits when I fall and keep me grounded when I start to soar. They love me unconditionally and without hesitation. I am grateful each day for their amazing love and support.

XO,

S

#mytribe