2016 Year of the Patient
Hello! I am Sophia Winters and I am 52 years old. I was diagnosed with SLE when I was 17 years old. I was a very on the go self-motivated young women who loved being with my boyfriend/friends. During my senior year I was very tired but attributed it to graduating and too much partying. In my senior prom picture, you can see the butterfly rash but at the time, I liked it as it added color to my face.
Soon after, I felt really run down and the pain was unreal. I started a seasonal position at “Meredith” and wanted full time so bad. A few gals thought I was in a car wreck-why else would I limp right? I remember that my hands hurt so badly that I couldn’t squeeze the toothpaste out of the tube.
& I had many visits with a primary care physician who told me that I had RA, take 16 aspirin per day and call him in a year. Basically, he was done with me and told my Mom that I was a hypochondriac BUT, he did refer me to a rheumatologist.
At that time and for years thereafter, Lupus was very difficult to diagnose. My rheumy (as we like to call them) asked me a few questions, ran some bloodwork and told me I had Lupus and being very naive, was so glad to have Lupus instead of RA since RA makes your hands gnarly. So little did I know.
Dr. J as he was called fixed me right up! Put me on high doses of steroids and oh yes, I was my old self…for a short while. I slowly started slipping backwards but being raised as I was (to do my best at all times) continued to go about life as a normal 18 year old. One Saturday, my boyfriend and I were at Adventureland, had to leave early because I was sick, couldn’t even make it to the car and the next thing I know, I am in a bed of ice with 106 degree temp.
I don’t remember anything for many days after. I had every organ in my body failing including my muscles. I was on dialysis. I had code blue two times. I was in ICU for many days with a respirator and I do remember that I hated it down my throat and how it made my teeth feel. The doctors were very skeptical but through Gods mercy, he spared my life. I completed physical therapy and after four months in the hospital was finally released to go home.
I continued with Cytoxan and high doses of steroids and as a result, I got osteonecrosis, or deadening of the bone, in my R knee. I had knee surgery to scrape dead bone and fuse together with pins and screws which was a very painful surgery. They chose this option because of my tender age of 19. It was much harder than the actual replacement which I later had done on both knees.
After this shock and all the struggles, I went into remission, yes remission!! I got off all drugs and I was “normal” again. I fought so hard for my life and I was thankful that God decided He didn’t want me yet.
I was promoted to supervisor and worked long hard crazy days. I was able to carry my daughter Stephanie and was blessed with a normal healthy and well watched pregnancy. I was able to raise her; run her around to her many activities. I maintained a neat organized home and even did weed whacking. Later, I learned to love to dig in the dirt. I felt sooo good! I would have never expected what happened to happen…
It was in 2002 while coaching Steph’s basketball team that I felt those familiar pains. I went to my primary care who didn’t think it was the Lupus because he said that when someone was as sick as I was, the Lupus can burn itself out----not for me. I started menopause at 37 and this is the same time that it came back. Did it cause it, who KNOWS but Lupus can be hormonal so my guess is yes.
None-the-less, it has never left me and I am still on steroids; this is the only drug that controls the lupus. I have tried every drug there is for Lupus including the newer drug Benlysta. I even tried Rytuxan/Rituximab which I had a severe allergic reaction to and one that I made the medical journal, ya know, where it lists possible SERIOUS side effects. I had the “back pain” that is listed. This was indescribable pain for which I was hospitalized.
Since then, I have had two thunderclap headaches, a subarachnoid hemorrhage, (please note that again God spared my life on both of these) bursitis, shingles 2X, autoimmune hepatitis, lupus enteritis (stomach), kidney disease, Raynaud’s syndrome, two thumb replacements, cataract removal, a rotator cuff repair and an aneurism for which I had a craniotomy (a third time spared by our Lord since it was by chance that this was caught).
I take 12 different pills every day, get Procrit shots for my kidneys every month, Botox injections every three month , acupuncture, use oils, heat and ice, and try to exercise. With this said, I feel the need to mention finance. All the drugs, doctors’ appointments, treatments, hospitalizations and whatever else there is does not come cheap. My husband carries the insurance and I am not on Medicaid. I am responsible for all bills which can be overwhelming. I did have a fundraiser which helped tremendously for the time being however; this is an ongoing illness so with that comes ongoing bills. Regardless, I can’t and don’t worry about it.
On a day to day basis I have chronic mixed muscle tension migraines and receive Botox injections, muscle weakness in my lower half and lower back pain for which I have not found too much help, hip pain (cortisone injections), I need monthly shots to keep my blood up (caused by kidney disease) and OOHH the fatigue, it played a huge part in my need to quit a career that I had for 30 years. As of recent, my tendons are stretched out in my ankles or “ripped” as my doctor said. I have tried physical therapy-it helped a bit, the cortisone injection, not so much either. I think another surgery is in my future.
There is so much to know about how Lupus and the drugs we take affect our bodies. I have had it for almost 35 years and I am still learning about this “mysterious” illness.
A bad day occurs when I do too much on a given day and it gets me down for several days after; where I have consecutive “jammie” days and barely want to brush my teeth. It seems that with each year comes longer “bad days” and this can affect me mentally. I can handle 1-2 easy maybe 3 days but 4+ gets to be too much. I allow myself these days because I do not let them get me down for too long. After all, who could keep upbeat every day when you have Lupus? Sometimes, I just plain don’t want to interact and this is ok! If I feel like it, I try to reach out to my friends and family for support.
A good day is when my pain and fatigue are down, I have family around and when I can accomplish things at home that I feel need to be done. Remember that I am a doer so when my checklist is checked, that is huge to me.
My family and friends are terrific and give me support with things I can’t do by myself like laundry vacuuming etc. especially my daughter & sister. They only know the surface of Lupus and it’s not their fault, there is just sooo much to KNOW about it.
With God all things are possible and because of Him, I am here and I can walk and drive and go swimming which I love to do with my granddaughter Vanessa! Even though I had the butterfly rash and have had skin issues, I can tolerate the sun which is another blessing. I take aqua fitness classes at Mercy which is sooo good on the body. I am trying to do more essential oils DIY stuff. I take things as they come up with this attitude: there is not one thing I can do about it so no need to stress. I feel that God has a purpose for me and I trust in His decision.
People always say “oh you look so good” and I do appreciate that. Lupus is a CRAZY disease. I call it the “joker” disease because of this; even though I look good, it is a whole different ballgame inside. My body is slowly self-destructing. Again, nothing I can do about it so I live for today.
My hope for the future is that the Iowa Chapter Lupus Foundation continue to grow, that Lupus awareness and fundraising be just as big if not bigger than cancer, that everyone knows what Lupus is (just a bit) and of course that a cure be found. Last but not least, that those of us with the disease continue to fight and try different and always remember that God never gives us more than we can handle.
Thank you for reading my story!