I’m Walking to End Lupus. Join Me?
I was diagnosed with Systemic Lupus Erythematosis when I was 18 years old. It was one month after I graduated high school and the news was devastating. It initially presented as terrible skin rashes all over my face, chest and arms as well as swollen hands, knees, joint pain and kidney inflammation. I was treated with high dose steroids, antimalarials and other medications to help get it under control. Within about six months, my Rheumatologist was able to get a handle on it. After that, my Lupus stayed fairly quiet for about 10 years.
In 2013, it reared its ugly head and I was hospitalized with my first pulmonary embolism. For those of you who aren’t familiar, I had a blood clot in my leg which broke off and went to my right lung. I was hospitalized and released on Coumadin which is a blood thinner. About a week later during a follow-up with my hematologist, she decided to send me back to the hospital to get an ultrasound of my leg where we found out that the Coumadin was not working. The clot in my leg had extended from behind my knee all the way up to my groin area. I was hospitalized again for about four days. They changed meds and once I was released again, I had to inject Lovenox into my belly twice a day for about nine months.
In the meantime, I moved from the Detroit area back up to Alpena. In 2016, I was diagnosed with another blood clot in my leg and this time pieces broke off and went into both of my lungs. I was hospitalized again and told “two strikes and you’re out” meaning that I am now required to take blood thinners for the rest of my life.
I have been hospitalized for many lupus issues affecting my legs, eyes, lungs, heart and kidneys. Most recently, in December of 2017, I was hospitalized at University of Michigan and had to have a kidney biopsy which came back showing that I have class IV Lupus Nephritis. I also received infusions of Benlysta monthly for over four years. Benlysta is the first drug that has been approved by the FDA for the treatment of Lupis in over 50 years. My veins have gotten to the point where the nurses have requested that I get a port put in and I wasn’t sure how much it was helping me so I decided to stop receiving Benlysta about six months ago.
I have suffered terrible physical pain when my lupus flares and horrible, embarrassing rashes all over my face, chest, arms and legs. I have had to go on medical disability and I am only able to work part time. I am on high doses of immunosuppressants like Cellcept, Plaquenil and Prednisone to name a few. Some of these medications increase my risk for certain cancers like Lymphoma. I have been told by physicians that my lupus is extremely aggressive and very hard to control. Last year they wanted me to receive chemo therapy for my lupus which I declined and I was instead treated with days of IV steroids, high dose oral steroids and 3,000mg of Cellcept a day.
Even with the issues that my lupus causes, I have still been able to be fairly independent which is a blessing. I live alone with my dog Max and my kitties. I consider myself very lucky that I am able to work at the hospital here in Alpena part time. My bosses and coworkers know my situation and have been extremely flexible and supportive. My friends and family are very helpful when I need them but I try to handle as much of this on my own as I can. Even when I take myself to the emergency room, I always have good friends and family reaching out to tell me that they will be there in a heartbeat if I want them to.
Well, this is my lupus story. I hope that many of you will join me as I walk to raise awareness in Alpena on Sunday, May 5th. We are meeting at the Alpena Band Shell parking lot at noon and will begin our walk down Chisholm Street. I think it will be really fun! We are raising awareness and the donations that we collect go towards valuable lupus research!!!