Lupus Fighter: Featuring Brandi, Eleven Years with Lupus

Friday, June 21, 2019

 Written By:  Brandi
Photography By: Felecia Causey

    My name is Brandi and I have 11 years involvement with Systemic Lupus Erythematosus or SLE or better known as Lupus. I am 40 with a 21 year old son. He graduated high school, while I graduated with my bachelor’s at the same time. We are in college still at the same time while he works on his Associates and Certification in HVAC, and I work on a dual Master’s program in MPH and MBA.
    I was a city letter carrier for the USPS when I was diagnosed in 2008. I have a history of 2 aunts with Lupus and my mom having discoid (skin) lupus. I hurt my shoulder while in the mail truck and after it not going away, I decided to go to my primary doctor. She knew I had a history and I really don’t remember what other things I complained of besides the shoulder pain. She did the ANA test and it came back high and positive. She then referred me to a couple of Rheumatologists. I tried a Rheumatologist here, who only treated me for Fibromyalgia, which I also have. After some time, he told me I did not have enough wrong with me. Yes, that happened. So, I went back to my primary doctor to get the referral for Birmingham. I have been with Rheumatology Associates with Dr. Abbott since then.
    I stayed with the USPS and struggled quite a bit until I had to leave on medical disability in 2015. My plan was to transfer to the VA after graduating and having a desk job. I never made it to that before I had to leave, but I continued to finish my degree. Before I left the post office, it was hard working in the sun. I would have horrible headaches on the walking routes from being in the sun and getting too hot. I would have leg pain that also made me feel like I could not continue with the route. I had a Supervisor that really looked out and helped me as much as possible. When you call out a lot from work, people look at you like you are faking, because you don’t “look” sick. They don’t see a cast, a port, a limp, or anything visible that can confirm your illness. You don’t have to look sick to be sick, but I did end up on steroids, which caused me to gain weight and then some seemed to feel sorry for me then, because they could “see” the change. 

    I ended up on steroids due to low blood platelets when I was about to get a kidney biopsy. Remember the doctor that said there was not enough wrong with me? Well, out of six classes of kidney disease, I was diagnosed with Class V (5) Membranous Lupus Nephritis or Lupus of the kidneys, but a mild version because I did not need dialysis like someone with that class would need. I worried that would it just happen one day that I will? I also worried because my son’s aunt on his father’s side, passed away from Lupus with kidney involvement at 37 and I worried would I make it past that age?
    I had a bone marrow biopsy when they figured out, I had low blood platelets and said just because I have Lupus, doesn’t mean I can’t have cancer. After 3 scary days, results were that Lupus was affecting my immune system and I did not have cancer. I was never so happy to have Lupus in my life if that makes sense. The IV steroids they gave me started heart palpitations and I ended up on meds because of that which I still take til this day.
    Before I left work, I had managers that worked with me as much as they could to help me do my job. I could no longer walk up the stairs, I could not pick up heavy packages, sometimes I needed help loading my truck and I really felt like I was burden on my coworkers, but they helped me with no complaints. I finally got approved for my post office disability and I think I rested for like a year. It has become increasingly hard managing lupus and fibromyalgia.     Fibromyalgia is widespread muscle pain and tenderness among many other symptoms that Lupus can affect, so for awhile it was hard to tell what was Lupus related and what was Fibromyalgia related. Lupus affects my kidneys, blood platelets, and joints, so I have joint problems in almost all of my joints, arthritis is almost all of my joints, and the fibromyalgia makes it hurt more than it should, so I am in chronic pain every day. I get gel shots in my knees due to arthritis being pretty bad there. It affects how I walk on most days and how I can get around.
    I sometimes have issues getting upstairs, drying off, getting in the shower, getting out of my car, getting out of bed, and other things that people take for granted. I was diagnosed and dealt with Major Depression and General Anxiety Disorder before Lupus, so I still deal with that now. More so the depression. I try to volunteer when I can, but standing too long hurts, sitting too long hurts, and walking to much hurts and causes my feet and legs to swell up. My family and friends admire me and also tell me to stop doing so much, but I have to. I used to do water aerobics, but they never kept the water hot enough at the YMCA for me, so I stopped going. The water helps so much. I wish I could afford those walk in/sit down showers that you can soak in because it is hard to sit in the tub. I would need help getting out. I am going to start back using the recumbent bike and getting on the elliptical machine, which really helps after you start using it more. 

    I stopped going to the gym because I had other problems going on, but I am going to try to start over again. I was up to 2 miles on the elliptical in an hour, which is an accomplishment for me. I can’t walk on the treadmill or flat ground because it affects my lower back pain too much. I try to keep busy when I can and rest when I can. I haven’t really been listening to my body lately, but I will be after writing this story. How can I expect others to listen to me, when I don’t listen to myself? As for what I will do with my 2 master’s degrees? Even though I can’t work a full time job, I will use my experience with a chronic illness and knowledge to encourage others that they can still live and have a life. I do travel with limitations and learn new things and people every day. I do miss my post office job because I loved helping others. I struggled and worked hard so my son would know good work ethic, and not giving up so easily. He works, goes to school, plays basketball and is doing what young adults are supposed to do like paintball, video games, FaceTiming, eating out with friends until he finishes school, gets a better job and starts working to save for a house and starting a family some day. He is a good kid and I am so proud of him and I know he is proud of me too.

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