Lupus, No Way!

When I was told I had Lupus by my rheumatologist, I said no way, not me! I have pain, but I'm fine.

Reading about it as a few years went by, I said to myself I don't have any of these severe symptoms. I'm going to be different. I'm never going to have these symptoms. I'm fine.

Starting to notice symptoms

8 years later, I'm having some of those symptoms. I have gained weight. My joints are terrible and I can hardly walk even with my cane on some days. I can't walk more than a few houses down the street and back. Exercise is extremely hard, but I power through, some bike riding and yoga on my good days.

Physical and mental health

If I eat any processed food, which is hard to avoid some days, I hurt really bad. If I eat salt in bloated. Now my liver function is low. Terrible depression, anxiety and panic! Spondylitis, fibro, too many to list. Take tons of medicine from my compounding issues appearing. I love the sun, but it doesn't love me. Even through the car window the sun makes my skin burn and itch.

High costs of treatment

Taking care of yourself holistically, which works along with our medicines is so expensive, it's almost impossible for me to do! Pool swimming at indoor places when it's cold here is very expensive not to mention not a good place to be.

Adapting my home life

My home life has changed. My kids are all grown and moved out. I can hardly clean like I use to. I have been a cook/co-owned a catering company, I had to give up. It's too painful to stand on my feet. My house isn't exactly great for a person with lupus. 3 floors and needs some work. Cement uneven. Fallen on it.

Finding a support network

However I have my kids and grandkids who give me strength to power through my days. I sell Tupperware part-time and they are just such fun, caring, inspiring people to zoom with.

Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?