"Since I've been diagnosed Lupus, I cannot begin to recall how many told me that they had never heard of this disease before. It's not a surprise, being considered relatively 'uncommon', with so little still understood about it. At some point or another, every disease and illness was a mystery illness waiting to be fully understood. Well, this is where we are, only it's not a new disease. It just gets sat on the back burner because we aren't the highest causes of death, but, it is considered the second most deadly disease of young women being the great imitator. For those unaware, Lupus is an autoimmune disease. Imagine being so excited about doing your job right that you just keep going and going and going. PROUDLY. Well, this is Lupus. It is your good cells gone rogue. They go protective happy so much that they begin to destroy good tissue, organs, cells etc. It doesn't stop. It doesn't want anyone to dull its sparkle.
In 2011, I began having unexplained rashes, discolored spots, reactions alongside many other unpleasant symptoms. We thought that I was allergic to many things, but after years of removing so many things and recurring doctor appointments, it turned out not to be quite that simple. As the years went by, my health continued to decline. I had dark spots throughout the inside of my uterus that they said looked textbook adenomyosis. After performing a hysterectomy, they learned that it was not adenomyosis, but uterine fibroids. My abdominal pains continued. I began breaking out into rashes more frequently. They would feel like the surface of your skin was actively burning. Like you spent a full day in the sun at the beach when you only walked without a hat to get the mail. We thought I was allergic to cats. No, short haired dogs. No, lotion. Still, no answers. I started having chest pains and breathing problems that felt like asthma attacks. My d-dimer was elevated, but the x-ray showed no indication of a pulmonary embolism. D-dimer is used to detect the clotting factor in your blood. I then had worse reactions that almost seemed as though I was allergic to my own sweat. At no time did it click that this happened every time I was in the sun. I developed a migraine that would... not... go... away. I eventually was on the max dosage of Gabapentin, to name just one of the many medications. They did MRI's, catscans and x-rays. One day, I lost the sight in my left eye for half an hour while at Target. My sincerest apologies to the cashier who had to witness the look of fear I had and breaking into tears because I was scared. Eye exams showed NOTHING WRONG, and I paid extra for the scan that takes pictures behind the eyes. I began having random numbing moments (one time, included my SCALP), dazing off more frequently, losing focus more, worse memory recall, exhaustion, fatigue, depression, anxiety. I was getting weird sores in my mouth, including on the roof of it. I bruised terribly easily. My thighs looked horrendous. My organs began acting funky. My scans were abnormal as was blood work, that only continued to cause alarm. My right kidney was damaged and has frequent problems. My lungs have thickened airways, that were thought to be COPD prior to my Lupus diagnosis, but was really inflammation from the disease. The orthopedist who did my spinal surgery believes wholeheartedly that the Lupus caused the degeneration to happen at the rate that it did. My heart has some issues, but thankfully nothing crazy has happened with that yet. I wanted nothing to do with the fun life I had built, and forget asking me to stay up after 10 p.m. I was done. I hopped from one doctor to another to another to another. It was one misdiagnosis after another. It was suspicions of other terrifying things, which in hindsight probably would have ended up being better than "this". Finally, I was accepted into a Rheumatology practice in late 2018. This doctor dug up every file from every doctor and every hospital. She reviewed all of my scans. Then it happened. January of 2019 I was diagnosed as one of the rare few who have non-ANA SLE. On average it can take individuals 6 years to be diagnosed with Lupus. It takes years of symptoms, charted appointments, pictures and a certain amount of checked off guidelines for being diagnosed Lupus. There is no one test for Lupus. You don't go into the doctor one day, and walk out with full knowledge about what you have developed. You're in the dark... for YEARS. You can have a positive ANA and have another autoimmune disease, or none at all, just as you can have Lupus with no ANA. Unfortunately by the time I received my diagnosis, so much damage was already done. So much of my life already heavily impacted. Plaquenil did not have enough success on it's own, which prompted their decision to put me on methotrexate. I have now been on it for almost 2 years and had my dose increased several times. While I deal with the medicinal side effects, my blood levels have improved and many of my symptoms have diminished (for however long, I am unsure). No rashes for a couple of months and no mouth sores at the very least so far! With sooner diagnosis comes earlier treatments. It could reduce your chances of having to be put on the harsher medications and offer a better prognosis. Like any medicine, the trick is finding a combination that works for you. I had been taken off of Folic Acid and put on Leucovorin which helped my hair loss. Like any disease, it progresses and there are advanced stages. The earlier, the better. This is why so many of us hope our fundraisers go well. Knowing that my children are at a higher risk for developing lupus I am that much more determined to be an additional amount of help for making that possibility less of a dreadful one if that time comes. We need a definitive test that comes back as "YES! YOU HAVE LUPUS." We need more tests, more medications, more knowledge and goodness gracious, a cure. The closest that you can come to it which not many are lucky to see at all, is remission. Our risks for heart attack, stroke, seizures and much more are heightened.
My husband, children, in laws and friends have been a tremendously amazing support system. I consider myself to be very lucky. The amount of understanding and love is uncanny. Every day that they are around, they are choosing to be part of 'this life'. They have rallied for me to help support the cause. They hate watching what I go through first hand but they have always made me feel that even if a cure doesn't come tomorrow, they give me hope. They need this research and a cure just as much, if not more than, I do. They want to know how to help, what to expect and what things can be helpful. To know requires research."
We are doing a 2 mile Lupus Walk on May 2nd, beginning at Flook park in Myersville at 12 p.m. - I would do World Lupus Day, but this year that is on Mother's Day. I'm set up for a 5k, but that's a pretty big commitment on my part that I'm not confident in. My husband registered a Lupus Tartan through the Scottish Tartan Registry. When he did, he ordered a ton of fabric. We will be making things to hand out to everyone who participates in our walk, as a thank you but also, support for anyone you know and love who may be fighting Lupus.
I’m Walking to End Lupus. Join Me?
Imagine a day when doctors can say, “There is a cure for lupus.” Until that day though, there is work to be done. That’s why I’m taking action in the fight against lupus. Join me as I participate in Lupus Foundation of America’s Walk to End Lupus Now® to raise critical funds for the estimated 1.5 million people living with lupus in the United States.
Will you make a donation to help me reach my personal fundraising goal and support the Foundation's efforts to improve the quality of life for all people affected by lupus? A generous contribution of $25 or $55 can make a definite impact. What’s more, if your employer offers a Matching Gift Program to employees, you may be able to double your contribution with just a little bit of paperwork. Trust me, it’s worth the effort! Every single dollar counts.
Did you know?
- Lupus is a mysterious and misunderstood autoimmune disease. It strikes without warning, affects each person differently, and has no known causes or cure.
- Lupus symptoms can be severe and highly unpredictable and can damage any organ or tissue, from the skin or joints to the heart or kidneys.
- While lupus can strike anyone at any time, 90% of people living with lupus are women. Women of color are at especially high risk.
- Only one drug has ever been developed and approved by the US Food and Drug Administration specifically to treat the disease.
Together, we can solve the cruel mystery of lupus. Thank you for your generosity!