This weekend I had to rush to hospital with a suspected blood clot which turned out to be something else for which I now take antibiotics.
At the triage stage I mentioned my lupus, which was duly noted. After a short wait I was taken in, a nurse had a quick look, discussed with the doctor as to next steps and then came to take some blood.
While getting ready to take my blood the nurse asked me how I got to be diagnosed with lupus. I thought she was only being polite so I described briefly the main points. But actually she was asking because she had an unexplained rash on her arm, repeated pulmonary infections throughout 2012, her hand joints were so painful sometimes it was difficult to do her job, she was so exhausted that many times she felt she couldn't come to work, she had rheumatoid arthritis in the family and her two children (v young) were having unexplained skin rashes every so often. And she had photosensitivity too. Many of her blood results were out of whack but her GP insisted to treat her for each symptom separately and told her to wait another 3 months and redo the blood tests.
She didn't want to be seen as a hypochondriac ( sounds familiar?) so she was reluctant to request a referral at this point, despite being so concerned. Needless to say that by the time I was discharged she changed her mind and had the name of my rheumatologist, determined to ask her GP today for a referral.
Two points I wanted to make with this story:
1. The path to diagnosis is as long and arduous for other people as for each of us, despite overwhelming evidence that should trigger more interest from GPs (but then we knew that, it is just that it was confirmed to me in such a random way)
2. I can't tell you how close I felt to that lady during that hour while I was in their care and by the time I left it was like we have known each other for ages. I felt for her struggle and i liked her for her decency and strength to carry on and care for others, strangers, on a daily basis, while battling this. When I left the hospital it was like I left a sister behind and I really hope she carries out her plan to push for a referral etc soon.
Lupus unites us in an unbelievable way and gives each of us strength and support when no one else can or wants to.
Here's to "Lupus United" everyone!