We Have Lupus, Lupus Don't Have Us

Tuesday, September 27, 2016

 These ladies were complete strangers, but they all have one thing in common, Lupus.

         Lupus has affected over 1.5 million Americans, mostly women are affected. These ladies have shared with me and you all there stories, of being affected by this disease.

My name is ReShekia Cooper, and September 11, 2010, is a day that I will never forget. That day is the day I decided that I was going to the emergency room to see why I was having really bad chest pains. I had been having them the entire month, but I kept putting it off. Once I got to the emergency room and got to the back, I had my blood drawn. When the results were back, the doctor came in and asked a couple of questions. He kept asking was I bleeding anywhere, and did I know how I was losing blood. After I kept saying no, he finally said that they were keeping me to run more tests. My doctor would come in everyday and say, “I don't get it; there's no way your blood is just disappearing.” My third day in the hospital, he came in and said his colleague wanted me transferred to UAB right away. Once my mom and I arrived at UAB and I was placed in a room; the doctor and a nurse came in. The doctor told me that I had to have immediate surgery. I was shocked. I was just playing around with my best friends, laughing, and joking, and now I have to have surgery. My mom asked the doctor why did I have to have surgery…what is going on. He turned and said, “Your daughter has been diagnosed with Lupus and a rare blood disease called Thrombotic Thrombocytopenic Purpura (TTP). I had heard about lupus, but never heard of the blood disease. The doctor explained all the do’s and don’ts to me. I figured, my normal life is over, and I will never be able to do what a normal 21 year old does. In my mind, I thought I would always have to be monitored.

The day I found out I was pregnant was scary because two different doctors told me that I couldn't have kid. Plus, I knew the disease could be passed along to my unborn, but I figured everything would be okay. I knew how serious it was when the doctor told me that I should have consulted with him before becoming pregnant because it can be a life or death situation. I was considered high risk, and was referred to UAB. The doctors there told me that 99% of pregnant lupus patients had flares throughout their pregnancy. However, mine was different. I didn't have a flare at all. The only problem I had was that my daughter’s brain wasn't growing the way it should. Due to this, I ended up having my daughter at Women & Infants in Birmingham when I was 35 weeks via cesarean section for both of our safety. She spent 4 days in NICU hooked up to machines while they'd ran every possible test on her. I'm blessed to have her even though she has minor issues.

   From the first day I was diagnosed, I begin to be unhappy, show signs of depression, and looked miserable. The life I once knew, was over with. I started seeing a counsellor who helped me deal with my depression, and helped me understand that the sickness wasn't my fault and that I had no control over it. Physically, I was worse. I was used to always jumping up and going. I would stay up all day and night. However, with my lupus, I’m always tired. It seems as if I never get enough rest, no matter what. A lot of days, my body hurts for no reason. When people ask me to explain the pain; I can’t. It's like your body is fighting itself everyday. My hair falls out from it, my skin is darker than it was before I got sick, and I've gained weight from all the medicine. My face breaks out, and skin rashes up from having too much sunlight. Nonetheless, I try my best to not complain because I know of people who have succumbed to the disease. Also, because not everyone understands what lupus actually takes you through. However, I am blessed to be able to still be alive. If I can tell people who recently found out that they have the disease any thing; I would tell them to never give up, and keep pushing through. I know it gets hard, and your body gets tired, but giving up isn't an option…now or ever. I've learn that I have lupus, lupus doesn't have me. I'm a fighter, and I will continue to fight against this disease

The year my life changed forever was in 2010. At the age of 15 years old, I couldn’t imagine being with something so fatal and horrific at such a young age.
Hello, my name is Katlin King and I have S.L.E. Lupus. S.L.E. stands for Systemic Erythematosus. Lupus is a chronic inflammatory disease that occurs when your body's immune system attacks your own tissues and organs.

Back in April of 2010, that was one of the worst moments in my life. Growing up as a normal teenager, I was in high school, active in all types of clubs, sports and just an all-around 15-year-old. Sooner than later things began to change. I found myself not being able to do the things I normally did on the regular basis. Even simple things down to like brushing and combing my hair. I figured maybe it was just me being lazy or just extra tired from all of the activities that I was so involved in, but who only knew that I was way in over my head more than I thought.

I was always swollen, sick, tired d in lots of pain. Me nor my mother could figure out what exactly the problem was. After going to the E.R. several times, no doctor could ever diagnose what was really going on. Everything was happening so fast, so sudden. Months after several test and multiple doctors, I was finally diagnosed with S.L.E. Lupus. Finally finding out what was really going on was a big relief but at the same time very upsetting and devastating. I was only 15.
After months and months of treatment, I began to get better and doctors were able to get my condition under control. Things were getting better but at times, I had my GOOD and BAD days. After graduating high school, I continued my education despite my disability at Alabama State University majoring in Criminal Justice. In college, things were steady with my health but as I got older and wanted to do more, things once again began to change.
At the age of 19, I was told that having children because of my condition could probably not be a good idea or could not be possible at all. Hearing that news was a big disappointment. Being a mom and having a family one day was an ultimate goal in life for me. After getting through college and managing my health things were seeming to be on the right track. Again, some GOOD days and some BAD days. My senior year, I received some of the best news in my life. I was PREGNANT! God knew what he wanted for me and I couldn’t have been any happier.
Expecting my first child and living with S.L.E. Lupus! Yes, the struggle was real trying to balance the two, but it was all worth every bit of it. Some doctors said that my baby would have complications at some point during my pregnancy. March 29, 2016, I gave birth to a beautiful healthy baby boy. God is so good!

Over the years and living with this disease, I’ve learn the importance of prayer and to always be grateful no matter what your situation may be. I want to encourage those who are battling this disease to always fight on, live on and always remember that Lupus does not define who you are. Yes, sometimes it can be hard and unbearable but at the end of the day, you are a true WARRIOR!
#LupusWarrior #LupusAwareness #LupusSurvivor
I am a living witness that all things are possible!

My name is Lataya Flowers, I was diagnosed with Lupus on October 3, 2014. What led up to my diagnoses was a series of severe hives, inflammation, joint pain, and hair loss. One day I tried to help my parents’ cut grass and the next day I could not get out of bed. This was not a normal thing for me and it didn’t feel like a lazy day, I physically could not get up. At that point it seems I had gone to almost every physician in my area; they all said the same thing; “Good news! Your lab results look great. Everything is normal; you are the picture of health.” Meanwhile, I felt like crap. In fact I was too sick to worry about my hair so I did the big chop and didn’t look back. Bye-bye hair.

Frustrated and determine to find out what was going on with my body I decided to make an appointment with a physician at the UAB Kirklin Clinic. I ended up in Rheumatology Department. When I arrive for my appointment they gave me a form that has all types of symptoms listed and when I finished I realized I had circled about half of the page; Yikes! Well, I go back he does some test and I leave. Two weeks later I return and that is when he told me I had Lupus. Lupus? What’s that? How do you get Lupus? He gave me the short and sweet summary, answered my questions and gave me bunch of things to read. He handed me his card and told me to call or email him anytime.

I’m not crazy, there really is something wrong, and the other doctors just missed it. Thank you lord, I’m not losing my marbles! I hugged the doctor and he smiled. He said “there is no cure but I will try to get you the best treatment available and then gave me a prescription. As I left the office I looked out at the patient in the waiting room and notice many of them were in wheel chairs or on a cane and at that point the fear set in. When I got back home I raced to my computer and googled Lupus. It was overwhelming and frightening. My diagnoses felt like a death sentence in the beginning of my research but the more I researched the better I felt. I found that over the years research has help to develop medications for Lupus patients so they can live normal lives. With the proper medications, a good physician, and a few lifestyle changes you can still live a long life.

I have always been an outdoorsy person. I like swimming and helping in the yard, tailgating, taking long trips and was always on the go. A major change for me was reducing exposure to the sun. My main trigger for my lupus is the sun. Ugh, I had a hard time accepting that but when I did it changed my life. It’s a little strange to wear sunscreen year round but it works. I just have to use a little imagination and creativity. For example, I can’t play with the plants outside for hours but I now have indoor plants; Tailgating is a now a Game day watch party; and well if I feel good I go to a game I just cover up with my UV protective clothing. The best part is my hair grew back. Yay!

For anyone who has recently been diagnosed my advice to you is “always communicate with your doctor and be honest”. Find a good Rheumatologist and follow their instructions. You know your body and you know when something is wrong. Your strength is your super power, even on your bad days you are fighting your hardest.

My name is Tangela Shealey. A year ago I was faced with a diagnosis that I never thought would happen to me. LUPUS! I never even heard of Lupus. April 2015 I started to feel like I wasn't normal. I worked a twelve hours on night shift. I notice my feet would swell but never hurt, I had a coworker tell me it was because of the shoes I was wearing. So I tried different shoes that didn't  work. I was always fatigue, I just knew something wasn't right. My eyes then started to get little sores on them and as days went by they started to swell. I knew something  wasn't right but I ignored it all. I tried to treat my eyes with all the home remedies but nothing work. I finally made up my mind and went to the ER. I was told I had a staff infection. Time went on and my eyes did start to go down. I then started to get ulcers in my mouth it hurt so bad I couldn't eat. May 19, 2015 I went back to the ER but a different one. I told them what all was going on they then checked my urine and notice lots of protein. I was examined and was diagnosed with, a urinary tract infection and history of Fabry disease. They then called around to see who could treat me. I was then admitted to Jackson Hospital. I was found to have acute chronic renal insufficiency. My condition improved and I was discharged May 25, 2015, with diagnoses of systemic lupus erythematous, acute chronic renal failure,  hypoalbuminemia, nausea and vomiting, volume depletion dehydration, possible mild depression, and deep venous thrombosis prophylaxis. I was home one night, May 26, 2015 I was in bed and felt a sharp pain on my right side. I was taken back to the ER and was admitted to UAB. I was told my kidney was bleeding and was going to have to have surgery. I was in ICU a week as things got better I then able to go into a regular room. Once I got into a regular room I cried and thought to myself why me. I also had tears of joy because I knew things could have been worse. I am now thinking I will never live a normal life. Things got better over the time. I was able to go home with a twenty four hour nurse on call and one coming once a week. My doctor told me I was going to have to travel to Birmingham for the next six months for treatments. I'm thinking man I thought this was over. Time went by and it was time for that first treatment I didn't know what to expect. As always I prayed and ask God to give me strength. After all I was worrying for nothing. Around like the fourth treatment I go in feeling my best because at this point I'm use to it. I'm waiting for my name to be called still sitting talking to my mom. They then call me back. I go in they tell me to pick a recliner and as soon as I sit down I get this funny feeling I had an headache, blood pressure was thru the roof and shivering. At this point the nurse is like we can't give you your treatment feeling this way. So the nurse contacts my doctor and let her know what's going on, she then gives a call back to tell her she wanted to see me. I go in to see the doctor. All I hear is she going to be admitted. I'm now asking why again, I thought I was doing good why can't I just live normal like the rest of the twenty one year old. I had two options make the best out of my situation and try to smile or curl up in a big crying mess and be miserable. Admitted to UAB once again, they ran test and I was told I had got a infection in my pic line. I'm happy as ever now because I thought it was something way more risky. The doctor then tells me she would have to take it out. I had a choice to get another one or just be a hard stick every time. Of course I choice to be a hard stick because I didn't wanna have to go back thru that same thing again. I then got better && was able to go home. Dec 3, 2015 was my last treatment I was so excited. By then I had decided whether I was going to be to be a victim or a survivor. I never entertained death. I had two options make the best out my situation and try to smile or curl up in a big crying mess and be miserable. My biggest physical affect was how fat my face had gotten because of the big dose of Prednisone.  Because of all the medication I am on I notice a lot of changes in my hair, skin, weight, and etc. I get very emotional at times because I think it's not fair to me to be so young going thru so much. But I always remind myself things could be worse. Always remember your body response to how you think, feel, and act. Lupus is often invisible, it may be difficult for others to understand. It can be painful, frustrating, causing anger and resentment. My best advice to you is never give up, always keep FAITH, communicate with your doctor, avoid sun, take your medicine, and most of all PRAY.

As the ladies begin to leave, I smiled with joy as they exchanged phone numbers. Thanks ladies for being  a part of my blog and sharing your stories...!

Post a Comment

Back to Top