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Nqo’s Story (Lupus)

Nqo's Story (SLE Lupus)Hi, I am a 21 year old girl living with lupus. It all started four years ago when I started my university studies. I would get a really bad headache that wouldn’t go away with the normal “pain killers.” In 2011, I woke up to a stabbing pain in my chest, I couldn’t walk or bend down. I went to the campus clinic where they put me on oxygen for about two hours. I was okay after that until the beginning of this year (2013).

I developed a very itchy reddish rash on my breasts, it later spread to my stomach and back. I went to a lot of doctors and hospitals to check it out. They did tests and gave me medications that still didn’t work. They suspected it was allergies and they even suggested I buy an allergy bracelet, but the tests came back negative. I then started developing pain and inflammations in every joint in my body. I went to the hospital and they said I was too young to have arthritis, so it would probably go away with time. It wasn’t until June that things got pretty serious. The rash had spread to the bridge of my nose and my joint pain had worsened. I was also having mental problems, I couldn’t write two of my exams.

After that I was referred to another hospital. My joints were so bad to the point that I could barely walk. They did a lot of tests and my results showed that I has a high rheumatoid factor that suggested I have rheumatoid arthritis. I then went to a different doctor who looked at my hands and said I have no protruding bones and I was too young so I probably had juvenile arthritis or something called SLE, so they did the tests again. Later I went there to collect my results, and all my tests for ANA and stuff like that came back positive. She then did my x-rays and said there is something wrong with my chest x-rays. She then sent me to ultrasound where they found a fluid surrounding my heart. They also said I have lumps in my abdomen and they think my kidneys have a problem.

They took a 24 hour urine sample and told me my protein was too high. I was then sent to a rheumatologist who saw the butterfly rash and diagnosed me with SLE lupus and put me on a treatment. They also told me to avoid the sun and use sunscreen. I also went to a dermatologist who said my skin cells are dead so there isn’t much they can do. They also did tests for rheumatoid arthritis. After a week of starting treatment I’ve developed a fever where I sweat and my sheets turn yellowish. I have also developed throat infections, my joints have worsened, I have breathing problems, conjunctive dysfunction, memory loss, hair loss, breathing problems, can’t control my urinating depression, mood swings, weight loss , and can’t cope at school. I have decreased the workload and my lecturers have suggested I take a break, but I won’t let this disease rule me.

It’s pretty hard having no one to take care of me since I am away from home. As I am writing this story, I am lying down in my bed because today I woke up with green veins all over my body and can’t walk. Lupus is an awful disease. It has changed my life and everyday is a struggle. Next week I’m going back to my rheumatologist. Hopefully I will get a better medication since this one makes me worse. I continue to fight like a girl through support of my family and friends, but I would like to join some support groups. Thank you for reading my story, keep fighting.

Nqo
South Africa
Submitted 09/14/2013

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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8 comments

  1. Please know that you are not alone in your struggle. I was diagnosed with SLE at the age if 49–I am now 59. & living a fairly normal life. I was almost where you are at one time, but with proper treatment ;Prednisone & Plaquenil) & plus lots of prayer on my behalf, I just have “bad” days once in a while. It DOES get better-:). I will pray for you- I know being so young & far from home makes it so much worse. God bless & keep you-:)

    • Thank you. I’m also on Predisone and Chloroquine,unfortunately I’m also anemic so I also take iron supplements,folic acid and calcium and vitamin D tablets to help with my bones. Its been quite better for these past days and I’m hoping I’ll be on remission soon. Stay blessed too and thank you for your kind words 🙂

  2. I am so sorry that you have to live with horrible disease, you are so young and beautiful. My sister and I both have Lupus. I know how hard and difficult it is to try to function and attempt to go on with everyday life. My prayers and thoughts are with you ..

    • I’ve learned to do some changes,the major problem lately is my arms. I haven’t been able to bend my elbows for more than a month but they are still deciding if they should give me treatment for rheumatoid arthritis too. Yes it does get better with time. On my last visit my Dr said there is improvement in my numbers . Thanks for the inspiration 🙂

  3. I would like to tell u just hang in there I was diagnosed with lupus when I was 16 right before my 17th bday and like you they said I was to young to have all the same thing you have now. Your gonna have good days and some very bad days but stay positive I’ve been fighting this ugly disease for 10 years. They even told me I couldn’t have children because I would die or my child wouldn’t make it but I’m a mother of twins and my babies are healthy so girl you live every day to the fullest and never give up faith in Ur self it’s gonna be hard but always remember you can, you will and live your life!!!! Smile even when you want to cry

    • Thanks very much,I went for my monthly check-ups and my rheumatologist told me the same thing,that if I have kids there’s a small chance of survival for both of us. He said if I want to try,I can but maximum is two kids. I am gonna keep smiling and thank you for the inspiration

  4. I am so sorry you are going through so much. I was diagnosed when I was 18 years old, and it was very new and scary to me. over the years I have learned to manage my pain and fight!. I am now 38 years old and still very controlled. There is a great support group with the Lupus Foundation on FB. everyone is always on there supporting each other and answering questions. I’ll send you the page if your interested :O) Best of luck and take real good care of yourself. eat healthy, get rest, keep a journal and notice what works for you.

    Mandy

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