My new invisible companion is Systemic Lupus Erythematosis. I was diagnosed with it in year: 20015. But I had symptoms since I was 13 years old. I went to the doctor quite a few times and their answer to my problem was not lupus but juvenile arthritis. And treated me as such. My mother my grandmother all had Lupus My mother kept pushing them to test me every year. They tested me I keep popping positive for five of the six markers. Was never all six. So I just kept on going on with my treatment of juvenile arthritis. But never got the relief I wanted or needed.
In 2015 I got extremely ill so I decided to try testing for Lupus again. To my husbands persistence. I went and asked to be tested for Lupus again. Believe it or not I was extremely grateful to get the diagnosis of Lupus. The doctor told me that he thinks that I got miss diagnosed that 15. He is fairly convinced that it was lupus and not juvenile arthritis. Apparently if the doctor doesn’t do the right testing it is hard to tell the difference between juvenile arthritis and lupus. I have been on the right medication for several months from my rheumatologist and feel much better. And now I am capable of walking longer distances without assistance. I was originally in a wheelchair, Walker and used a crutch for many years. When I got the right medicine for my rheumatologist that I have been meeting for years I was capable of doing so much more.
The biggest adjustment I’ve had to make is: avoiding UVA/UVB rays
Most people assume I’m NOT sick because I don’t often look sick.
The hardest part about mornings are joint stiffness.
A gadget I couldn’t live without is: sunscreen lotion
!The hardest part about nights is joint pain.
Each day I take pills & vitamins. I would highly recommend those with lupus to take some of these vitamins. Vitamins: flax six day, Glucosamine 2 to 3 a day, vitamin A, B, C, D. I take these on a daily basis and they help me a whole lot. If anybody has any other vitamins they take that seemed to help them please share.
If I had to choose between an invisible illness or visible I would choose: NEITHER.
Regarding working and career: because i’m legally blind I am on permanent disability. So I was never able to work because of my vision loss.
People would be surprised to know how much sleep I require. Believe it or not the commercials about Lupus really don’t tell the whole story. There’s just no substitute for doing research and talking to people with lupus. The only visible sign that I have that shows I may have lupus to people is a butterfly rash on my face. Which Will appear more obvious when I am sick.
Something I really miss doing since I was diagnosed is basking in the warm sun.
Being outdoors on a regular basis. Is now something I am not able to do. I try to limit myself to first thing in the morning and in the evening. I do my best to not go out in the afternoon.
A new hobby I have taken up since my diagnosis is blogging. I have started several blogs. If I suddenly did not have lupus the first thing I would do is spend the day outside at the beach.
Of course with all illnesses you must learn patience. But I love it when people tell me they keep me in their prayers. It really helps.
When someone is diagnosed I’d like to tell them you are not alone.
Something that has surprised me about living with an illness is the isolation of living with a disease none of my friends have. The nicest thing someone did for me when I wasn’t feeling well was give me a hug.
Regarding alternative treatments I: wish I could afford acupuncture (because I haven’t tried it) and craniosacral therapy (because it really helps).
One of my favorite medical TV show is Mystery Diagnosis! I am a huge Star Trek fan and a sci-fi fan.
The fact that you read this post makes me feel I’m not alone. if you have Lupus in any form please reach out to me. And I want you to know you are not alone.
I have started a blog titled Lupus My Invisible Companion. I would love to add a lot of people’s stories about living with Lupus been one big blog. And have suggestions on how to improve your life. Such as prescriptions, vitamins and exercises. I believe if we all work together we can help one another. And share our knowledge and educate people about Lupus.
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