Picture this: it's Thursday night and your left hip is stiff, sore and a little swollen. You think to yourself "hey, this is normal, you've been really active, arthritis gets sore" and you move along with your life. Flash forward a couple hours, its 11pm and you're getting ready for bed. That little pain you felt earlier? It's getting worse by what seems like the minute. You're having troubles with the stairs, walking, hell, even laying on the couch is painful. You take something for the pain, and drift in and out of sleep for the night - waking up sore, readjusting and rolling back over to sleep.
You wake up Friday morning and start packing for camping, but subconsciously know that you really shouldn't go if you're feeling like this. You're sore, lethargic (but you tell yourself its from the lack of sleep) and move on with your day. It's an hour before you're supposed to leave, and you now know that its not a good idea to leave town. You lay on the couch, cancel your plans and contemplate what to do next. You don't want to go to the hospital, especially this early, because every time you do it doesn't really get you anywhere. You usually spend hours in the emergency room just to go home with pain killers and advice to 'follow-up with your doctor this coming week".
Eventually though, the pain gets unbearable. You go to the hospital and tell them the whole story "My name is Allie Roy, I am 25 years old and I have an auto-immune disease called Behcets. I am on immune suppressant medications and am experiencing what I think is a 'flare-up' of my disease". You try to read the triage nurses expression.. Is she taking me seriously?
Flash forward about half an hour, and they call you back in to see the doctor. This is terrifying. Half an hour? Must be serious - they never call you back that quick. You literally hobble along, trying to keep up to the nurse, and change into a gown and crawl under a heated hospital blanket (the best part, really). The doctor comes in a while later and explains the plan of action: big dose of advil/tylenol, calling the specialist, joint mobility test and taking blood samples to check that everything is okay on the inside- oh great, you think to yourself - your blood tests always come back normal.. they're going to send you home without any answers.
Time flies when you're having fun and next thing you know the doctor comes back in with some updates. Your inflammatory markers are up, your joint mobility is weak and the specialist suggests steroids and pain killers to get you through. You start crying... why? Who knows. Are you finally happy that someone is taking you seriously? Is the pain so unbearable that it draws tears? Does the word 'steroid' still make you cringe thinking back to the terrible side-effects they left on you years ago?
This was my experience these last couple days. I feel so thankful that this was a positive visit to the emergency room, because they aren't always. In the last ten years, since the onset of my symptoms I have learned that when you are faced with something that isn't black and white, something where answers are not always readily available - you never really know how the visits will go. You hold off getting treatment for fear that no one will believe you, that no one will validate your pain. This is scary. And sad. And nearly impossible to understand.
The truth is, I don't know why I'm writing this. It's not for sympathy, it's not for attention. It's to finally put into words the frustration and the uncertainty I feel every time there is an ounce of pain or at the first sign of weakness in my immune system. I have been looking, begging for something to write about these last couple weeks and this, this just came so naturally. It's nothing special, not descriptive or well-written, but its experience and its important.
