As a former military wife, I'm completely familiar with the concept of "hurry up and wait." There's a flurry of activity, then a long, grinding, wait period as things behind the scenes fall into place. It can be agonizing. Things don't happen in Hollywood time. Just because there's a cure doesn't eliminate the process. Doesn't change the business cycle in the slightest.
Still, it's really difficult to keep that perspective when my suffering is RIGHT NOW. It's difficult for people on the outside to understand because they can't see the pain and distress that's causing my urgency. I have to give myself mantras that "I'm not going to worry about X until Tuesday" (or whatever) so that I don't make the waiting worse.
Even with the promise of a cure, there are hoops to jump through. I've been particularly non-active with my health care for a long time because there was no point. Now that there is, it's still a grind to get to the solution.
What's so frustrating is there's absolutely nothing I can do. I feel like a little kid staring at all the presents under the Christmas tree but I've still got hours until my parents wake up. All that glittering promise and I can't have any yet.
The adult side of me is cautious. The cure is steroids and an immunosuppressants. I've already been in and out of the hospital before with the antibiotic resistant form of staph: MRSA. They nearly lost me once. That's not something I care to repeat. Being on an immunosupressant is going to make me susceptible to everything contagious. And I already have a low resistance to such things. That terrifies me, especially with no financial means of arranging a clean house.
Before I knew there was a cure, I could trudge along just enduring best I could. Now I've got to throw myself back into the process again. The potential outcome is completely worth it. But the road there is fraught with peril. So much can happen between now and then. I continually remind myself to take it one day at a time. Sometimes, one moment at a time.
The key to walking through hell is, don't stop. I've found the sign marked "Exit." Now let's see if I can get there. I have a week to wait to hear about my referral to a the only adult neuroendocrinologist for 3 states. Then I get to wait for an appointment, which could take from 9 months to a year (if last time is at all telling). Pituitary tumors come first, and with only one neuroendocrinologist in the state... well... there's gonna be a wait.
I've just gotta keep stubborning it out in the meantime...