Living with Lupus: Sebrina Smith-Henry
My name is Sebrina Smith-Henry and I am living and standing strong with Lupus! I have had issues with anemia and tiredness all my life, as far back as I can remember I had to take this brown nasty medicine when I was a child, they called it growing pains, but my body was in pain & hurting even when I was small. I remember having an episode with my legs and they had to be wrapped in warm towels and massaged, but after that I would feel better again. I was always tired, but I had to keep mobile, because I didn’t want to be called, lazy all the time. I was diagnosed with Chronic Fatigue Syndrome and Chronic Anemia while I was stationed in Germany with my husband at the time. I knew that I was tired, but I continued to work and go about the things in life that made me happy. The doctors prescribed me iron pills and that was the extent of it. When I became pregnant, my gynecologist also gave me additional iron pills and other supplements to take during that time and I was advised to rest as much as possible. After I had given birth to my daughter, my iron was still low and while in the hospital. I had to take some stabilizers for my blood because I had to have a C-section to deliver. I never experienced a bad episode with my anemia and always took my iron pills and changed my diet to include iron rich proteins to help keep me up and moving.
When I divorced and moved back to Florida with my daughter, I begin to feel tired and run-down again, so I made an appointment with my doctor and he looked over my records, ordered blood work and referred me to a rheumatologist and a hematologist to see what was going on with my blood. This is when I was given a test and was officially diagnosed with Chronic Anemia, Lupus, Sjorgen’s Syndrome, Rheumatoid arthritis and an array of other hits on a list that had over 16 things on it with a lot of numbers and things I didn’t understand. This started my journey to understanding why I was always so tired and why my body felt like it was always in a vice grip. I had so many things coming at me all I once, I had to sit down and process it. My doctor explained what each thing on the list meant and how we were going to work together to find the best way to get and keep me healthy.
This was in October 2008 and it seems like each day after that has been blurred by doctor appointments, tests, medicine for this and medicine for that, mini hospital stays and a whole lot of prayer. I was taking so many medications that I was having multiple side effects, but the worst of them all was when my menstrual cycle would come on, I would bleed extremely heavy for nine days straight and that would cause my levels to go down, because I couldn’t hold anything on my stomach or eat during these nine days.
Then in 2012, I was able to come off all medicine and feel great that whole year, my pain levels were managed with physical therapy and light walking, I felt great. Then in 2013, I fell and tore my quad, hamstring and gluteus muscle and I was sent to pain management. My body was locking up on me daily and the pain was horrible. I was given shots in my back and a TENS unit to stimulate my muscles and physical therapy. I was back where I didn’t want to be, on medicine again. I had to endure pain and get IV infusions of iron and other supplements three times a week, until my blood levels became balanced.
Finally I was able to walk without the need of a walker, cane or crutches. I had to wear braces on my knees and thigh, but I was walking. My cycle continued to get worse and I ended up in the hospital in June 2013 due to an infection in my sciatic nerve that locked up the right side of my body with what the doctors thought was a stoke. I spent four days in the hospital and was able to regain the use of my right hand and I could see out of my eye again, but my leg was still numb in some areas and I had to undergo therapy in the hospital. Eventually I was able to walk with a cane and was stable enough to be discharged. Here I was again, back on medicine, back using a cane and back to where I didn’t want to be, depending on others to help me. With the help of physical therapy, I was able to get back to full use of my right leg, but still had to wear a brace to help with stability. I thought that this was the end of all that medicine and I could be free yet again.
During a routine gynecological exam sometime afterwards, the doctor found multiple cysts and fibroids on my ovaries and uterus that had to be removed, I would also have a partial hysterectomy. So the surgery was set for September 2014, I wanted a date after my daughter’s birthday (9/5), so I went in and had the surgery and stayed for about three days and I was back home with restrictions. Little, did I know that this one event would take me on a journey that would have me fighting for my very life. When I came home from the hospital I was again on medicine -medicine for pain, infection, iron, and blah, blah, blah. It seemed like all I was doing was sleeping and taking medicine. I was extremely tired and when I had to go back to get a gyn check up, they looked at my areas for the surgery and they were healing fine. I was told that it was a slight infection in my urine, so I was given another, stronger antibiotic to take. This cycle went on for about 6 weeks, still having an infection in my vaginal area, still giving me a stronger, antibiotic. Finally I began to feel better, was going along my day, no pain, no aches, just enjoying life. I had noticed that I was swollen a little bit in my hands, feet, and face, but I thought that was due to the steroids and just keep it moving.
Finally I had to see my primary doctor and she ordered some blood work, I was feeling very tired, along with some other symptoms, but I wasn’t going to share all of my hurts and struggles because this was a family celebration and I wanted to eat and share in the festivities. I did the blood work and by the time I got back home, I was told that I had to go immediately to the hospital. I wanted to wait and my doctor told me that if I didn’t go she would send an ambulance for me! I realized then that it must have been serious for her to say that, so I went and I was told that I would be getting blood transfusions that would take about three days.
After several blood transfusions that didn’t work, I was diagnosed with Thrombotic Thrombocytopenic Purpura and Hemolytic Anemia. I spent 32 days fighting for my life, going from the ICU to a regular room and then back to ICU/Isolation. I also underwent plasmapheresis therapy to have a complete blood transformation and over 22 plasma exchanges in order to live. While I was going through all of this I had my very first outbreak of shingles and I had to be moved to isolation for 20 days under going anti-viral therapy as well as Plasmapheresis therapy.
I finally was able to come out of the hospital in December 2014 still having shingles but they were in the midst of drying up. The shingles that I experienced were not a normal outbreak; I had to get my body checked and examined each day because of the open sores on my body. I went through pain that was so extreme that I would pray to die, to be out of pain, because no pain medications seemed to touch that pain that went straight to my bones. Nevertheless, I made it out and had to stay isolated in my home for another two weeks to be able to allow my immune system to get accustomed to my house again.
I was able to walk in my first Walk To End Lupus Now in March 2015 in Jacksonville, Florida. I put together a team to we raise money and walk. During my hospital stay I adopted several songs along my journey to help me each day and I wrote in my journals and documented my 32 day journey and today I am back to not taking any medicine; instead, I take an organic multi-vitamin and I have learned to listen to my body and I rest each day and I have emerged with a battle cry that I say each morning: “I have lupus, but lupus, doesn’t have me. I am a lupus warrior! I am standing strong!” Thank you for reading my journey; I am living proof that my purpose is still precious. Although I could have been gone, I have another chance to give back and give love. I love my life and I am living each day to the fullest.