Having autoimmune disease has been difficult but in many ways has enhanced my life, explains Julie Jo Koehler

I was diagnosed with systemic lupus in March 2010 although I’d certainly had symptoms for many years before then. My diagnosis was finally made after I broke out in hives in reaction to the sun, had three miscarriages due to blood clotting issues resulting from lupus and pernicious anaemia (vitamin B12 deficiency).

Nerve damage in the form of mononeuritis multiplex has been a consequence of lupus. Walking became horribly painful, issues with my carpal tunnel meant that my hands were sore too and very soon I had to reduce my hours; I’m a 53 year old graphic designer from Phoenix in the US.
I was diagnosed with reactive arthritis in December 2012 after experiencing sacroiliitis (inflammation around the lower spine and pelvis) and conjunctivitis. It didn’t take my doctor long to work out what was wrong, as I’d had an infection 10 days earlier… salmonella from some chicken that I’d made. At the time my immune system was compromised due to drugs I had just started taking for the lupus.

The salmonella had already passed so we didn’t need to treat that, but I was put on steroids to help my body take on the reactive arthritis.
Between the insanely itchy hives and rashes from the sun, nausea from gastrointestinal issues and chronic pain, I was a mess trying to work. Eventually it became too difficult to make deadlines and I moved my office home and filed for disability.

Unfortunately in my case the reactive arthritis hasn’t abated. In fact, I get recurrent bouts of sacroiliitis in varying degrees of severity, and conjunctivitis every few weeks. I’ve had salpingitis (infection and inflammation in the fallopian tubes) three times too.

My husband has been a huge support throughout. He has an extremely bad back so is also disabled and we have two children, one grown and married and a 14 year old. We tag-team it to get all the household chores done. We’ve had to modify how we do things. Cooking takes longer and we both need lots of rest. But it all gets done!

Awareness of autoimmune diseases is very important and I try to help others in similar situations as much as I can. I share information, make graphics online and run a handful of lupus groups on Facebook, a couple of Google Plus groups and am very active on Twitter.

Having autoimmune disease has been difficult but in many ways has enhanced my life. I am grateful to lupus and reactive arthritis for finding me the amazing people that I would have never met.

My advice for anyone in a similar situation is… do not become a martyr. Slow down work but find ways to continue if you can – I still do some graphic work from my home office. And don’t give up. A bad day does not make a bad life!

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