My Life with Lupus: Personal Stories
We're introducing a new series of personal stories about living with lupus. Each month we will highlight someone living with lupus, sharing as little or as mush as they would like according to their comfort level. Please share these stories of courage, tenacity and love.
It was 1990 and I was 27 years old. I had a job I loved as a computer specialist, loved to travel, friends and a wonderful husband. It was time to start a family! I was working full time but my "morning" sickness was more like "all day" sickness to the point I had to stop working until this phase passed. But other problems began almost immediately, the most noticeable change is what happened to my face. I started getting lesions all over my face, it got worse and worse every day. The lesions that covered my face were large disgusting sores so embarrassing that I wouldn't go out in public unless I had to, mainly for check-ups. I went to a dermatologist and got cortisone injections in my face to try and help heal it.
But now, the pain began. It was mild for a few months but never really put much thought into it figuring it was the pregnancy. It started out with my legs, the pain became so intense as the pregnancy progressed that all I could do was sit and cry. Several months after my son was born and the symptoms didn’t go away, I finally went to my internist and after a battery of test and a list of symptoms, I was diagnosed with Lupus. I began a regimen of medications and had to make some life changes. So many things I used to be able to do without thought, I just couldn’t do anymore, my body wouldn’t let me. In 2000 my life really got shook up when I was having a strange symptom of traveling white lights in my peripheral vision and an MRI revealed white matter, lesions, on all different layers of my brain. The reality of Lupus was more real than ever now that it was attacking my brain. I began Cytoxan chemotherapy treatments that lasted for over 2 year along with all the side effects of chemo. It was a very difficult time in my life but I was fortunate to have the support I needed to get through it.
Lupus has affected my life both physically and emotionally. When I wake up in the morning, I never know if I will have the energy or ability to do what I want or need to do that day. It can be very depressing. My social life has been adversely affected because I am in too much pain or just don’t have the energy to interact with people. Most people don’t understand that just because we may look “normal” we feel anything BUT “normal.”
I take about 15 prescription medications daily which gets very expensive even with insurance. Not all medications are even covered by insurance which limits some of the relief available. I have about 10 different doctors each a specialist that I see several times a year. Some weeks are filled with doctor visits or tests which becomes very tiresome and expensive.
Financially lupus has been a huge burden! Due to the high costs of frequent doctor visits, prescriptions and tests. The inability to be able work adds to the financial burden.
I've been through a lot, but others have been through so much more and even lost their lives to this horrible disease. We need funding to help with research to find a cure.
Please visit my walk page to contribute to my efforts!
Hi, My name is Shirley Whitaker, I am better known as Ninni.
I was diagnosed with lupus after many doctors evaluated me and said I had neuropathy and or rheumatoid arthritis.
My family doctor decided to give me a complete blood work-up. After receiving the results she called me and my husband into her office. She said the blood results looked as if I had lupus but she wanted me to go to another doctor for him to do his own blood results to compare with hers.
I made an appointment went to the office where they took about 11 vials of blood from me.
They compared results and the conclusion was I had systemic lupus. I have suffered so much not knowing what was wrong with me, being diagnosed with so many different conditions has taken a toll on my life but now I know what I am fighting and fight is what I am doing for not only me but for all who have lupus.
Please visit my walk page to contribute to our efforts.