There is a common theme in my IBD life and that is the waiting game. I feel like I’m always waiting. For over a year I’ve been waiting for some thing or another. It’s a bad, bad habit I’ve gotten myself into and I’m starting to drive myself a little crazy.
Last year, waiting for an appointment to see my GI. I let my flare get out of control rather than checking myself into the hospital.
Next I was waiting for the steroids to work, waiting for the steroids to wean out of my system. Waiting for my puffy face to go down. Waiting for it to puff up again.
Then I was waiting to be admitted. Waiting for a bed in the emergency room and for the doctor to make his rounds in the hospital for an update. Waiting for a scope, waiting for the results of the scope. Waiting to be discharged, waiting to be admitted again.
I’ve spent time waiting for the washroom. Waiting for morning. Waiting to get through another hour or another day. I’ve not been able to wait for a washroom…and found myself waiting for the shower.
I’ve been waiting during an iron infusion. Waiting for a Remicade infusion. Waiting for an antibiotic infusion. And then waiting to see if Remicade is going to work… And when it didn’t, I waited to see what the next steps were.
I was waiting for funding. Waiting for paperwork. Waiting for Trillium approval. Waiting for pharmacy payments to go through. Waiting for Remicade appointments to be moved up. Waiting for the drug company to approve compassionate dosages.
I was waiting for New York, or Costa Rica. Waiting for summer, for the fall, for Christmas, for the New Year.
Waiting to go back to work. Waiting for some time off.
Next I was waiting for a new GI. Waiting for blood work and another scope. Waiting for the results and the for a surgeon appointment.
I was waiting to be admitted again. Waiting for O.R. time.
Waiting to heal, adjust, cope and adapt.
Right now, I’m waiting for my hair to grow.
And now here I am again, waiting for yet another surgeon’s appointment. Through this whole waiting game it felt like once I get through one milestone I could start living again. Start having a normal life. I could be happy and healthy once I was discharged, or once I was on vacation, or once I had my ostomy.
And now I find myself in the same frame of mind, waiting for my J-pouch before I can feel normal again. I will re-register in courses, plan on moving out, look at booking my next trip, wear normal clothes, eat normal food, perhaps dating again….all once I know when my next surgery is, and can be completely through the medical drama. I can take my life off hold.
But what a horrible habit I’ve developed. My life is happening right now. I may never be able to have a regular diet, or go a month without a doctor’s appointment, or feel completely normal again after this rollercoaster of a journey. The truth is there will always be some excuse to feel stagnant. But I must keep moving. Moving forward.
I love the fact that my ostomy has given me a healthier life. But by no means is it normal. I’m still adjusting to that fact. But who really has a “normal” life with no extenuating circumstances holding them back? The challenge is to find the motivation and ambition I once had and use it right now instead of waiting.
(SIDE NOTE: Just wanted to give an update as to where I’m at with my next surgery. The referral has been made to the surgeon at Mount Sinai. Since I haven’t heard from her office I’ve phoned my own GI and asked for an update. At this point the surgeon is out of the office until April 26th. My GI’s office will phone back then and “light a fire under their ass”…. Until then, I wait.)