Liz Denbow Omenhiser
A tale about me- All my life as a kid growing up I had knee, back and hip pain. My gym teachers never believed me, my doctors told me it was cause I was fat and had larger boobs. And I was sick all the time or pretending to be so my poor mom didn’t really know what was up either. I can remember laying in bed at night not about to sleep because my hips were throbbing. I too believed what the doctors told me, my fatness was causing the pains.
In March of 2006 I was working 40-60 hours a week as a bartender/manager and putting the final touches on my wedding. About a week and a half before my wedding, my one foot felt like I sprained it. It was swollen, pretty normal looking swelling. John bought me an ace bandage and wrapped it up for me. The next day my knee hurt too. john took me to emergency care, where the doc told me I had cellulitis and she gave me some anti-biotics and pain meds. The next day both of my feet looked like the picture below. (that is actually my foot.) And both of my knees were swollen and throbbing too. Panicked and in pain, unable to walk and vomiting from the pain- I screamed and screamed down the hallway (old apt had a 40ft hallway) for John to help me. It was terrifying and I had no idea why this was happening to my body. He took me to the ER, where they doped me with Dilaudid on iv until I was in a drug filled dream land. So 6 days before my wedding here I was in the ER unable to walk and unable to function with out the pain meds. The er doc, was not an Orthopedic or Rheumatologist doc but he thought that my weird symptoms and flair up were cause by something a doc like that could help me with. He told me about MMI, gave me pain meds, steroids and more anit-biotics and sent me on my merry way. The night of my wedding rehearsal, I was on a walker. I was on 60mg of prednisone at my wedding, to just be able to walk down the isle. Which is a lot.
It took about 8 months and finally a great doc in DC to diagnose me. Sadly he is too far away and too costly to see on the regular. Luckily, I have not had any flare ups like that since. Everyday I have pain of some form, whether it’s my knees, the joints in my hand, my feet, my hips. Right now typing this, it feels like my spine is on fire. I refuse to take the drugs they want me to take, I’m not trying to start that now, then you have pills for pills for pills. And the drugs are pretty hard core, like methotrexate or embrel and have more side effects then good effects. I also refuse to act like I am in pain in public, it’s usually when I get home that I collapse or sit on the couch waiting for the ip profen or aleve to kick in. And when I can afford it I sometimes self medicate with mary j, it works pretty well. And I’m waiting on MD to step it up with the laws on that so I don’t have to feel like a criminal when I just don’t want to hurt.
Auto-immune diseases suck, ask anyone who has one- especially when you look healthy. It’s mentally challenging and physically challenging. You go from being able to open a jar to not being able to curl your fingers. Or standing at work all day to needing to sit every 5 minutes. It takes a long time to get used to not being able to do things you used to do. And AS hits people at a very young age, which makes it even more mentally challenging, feeling like a 37 yr old in a 95 year old body really fucks with your head.
Maryland, United States of America