Pillcam Day 2: Agile Patency

I went in at 7:30am to swallow the pill for the agile patency.  It's purpose is to make sure everything is wide enough and nothing gets stuck. Tomorrow at exactly the 28 hour mark, 11:40am, i have to go back for an xray to make sure it passed and isn't stuck anywhere. Then I go home and wait for a phone call with the results and to schedule a time for me to go back again and swallow the pill cam and get hooked up to the device that reads the images for 8 hours.

I knew this process was going to take about 2 days but i didnt expect a 3-4 day event. And it really makes me think, what would I do if I was working? And this isn't the only time the doctor pulls me in for these tests with unpredictable timelines. I mean think about it: i couldnt go to work during these days...or at least tell them a time i couls be there. And honestly, how many jobs out there can you just tell them I may or may not be in all week and if i do come in, i dont know what times or for how long. Ok?...yeah i don't think that would go over so well! This is my week and how it doesn't seem possible to hold on to a job during weeks like this:

Day 1: Prep day aka laxatives!

Day 2: Swallow a pill and don't eat for an additional 4 hours. ..yes i know you're starving and about to pass out but wait 2 hours before you drink anything and 4 before you eat and try not to pass out, especially if you have to go to work!

Day 3: Come back in for an xray and then wait for us to call you and then come back exaxtly when we need you to either today or tomorrow. ..hope you don't have anything to do!

Day 3/4: Once again, drive back up here (40min for me) and swallow the camera capsule and have wires coming out of your shirt and don't expect to be uncomfortable if you have to be in public aka a job and i know you have no choice because we just made you take half your week off already! Oh and good luck keeping your job after you have had to be out so often for doctor appointments, hospital stays, testing, and of course,  actually being sick. And FMLA? Yeah, you used up those days in the 1st month plus we don't care.

Ok!! My rant is over! I'm just hungry and cranky and thinking about this fun crohnie life haha. Seriously though, the procedure isn't complicated by any means! It's just time consuming the way it has to be split up over 3-4 days. It is also frustrating when you can't eat and the hunger kept you up all night and you also couldn't have anything to drink after midnight, which you wouldn't notice when you're asleep but of course that wasn't the way my night went (even after taking my ambien).

So there you are! Day 2 of the Pill cam!

Crohn's VS Me

I feel like this flare up is beating me and I refuse to let it win. I'm in a difficult position.  My fiance has court in the morning,  2 hrs away. Crohnies know how bad that is. For those of you who don't,  long drives with long distances between bathrooms are the most dreaded tasks. He supports me and my illness so much, even when it inconveniences him and I am always there for him. He wants me there so bad for support and I want to be there. But my Crohn's wants something else. I don't know what to do. I dont want the crohns to win. Its not fair. Im going to do my best to go with him. I cant let gim down, hes not sick, why should he have to suffer the consequences of MY disease??? I dont even care about myself and how im feeling. I only care about being there for him. So im sending a message to my crohns. ...BEHAVE! YOU WON'T WIN THIS ONE!!!

Please say a prayer tonight that it calms down enough for one day, just one day!!

THIS is normal

I finally read The Fault In Our Stars. And as I did, I found myself relating to her often. It's much like she said in the book about her pain. When you're a professional sick person, you read it and understand and agree almost instantaneously.  When the pain is at its worse, you don't continue to cry or scream out. That only makes it worse. You rate it a 9, not a 10, because you know one day it will get worse. You put your mind on other things, you're courteous and polite and say thank you a lot and smile a lot because if you can do anything to take away from the pain, or at least not add to it, you do just that. You accept your defeat. You seek help from the doctors and you do what you can to not make it worse, to help the only way you know how. Doctors see that as having less pain, needing less assistance. They see it as strength by having less pain. But in fact it's quite the opposite.  It's more pain. And while it is strength, it is strength in bearing and emotionally coping with the physical overwhelming, unbelievable pain. And oh trust me, it is MORE pain.

I've spent more than enough days of my life in hospitals: counting ceiling tiles, discovering the way the plastic strips are perfectly intertwined to hold the tiles up, passing in and out of awareness, a lot of nurses,  a lot of thank yous, a lot of being poked and prodded. That doesn't scare me. It scares me more to think I can't remember my life before this. Of course I have memories, but I can't remember what normal feels like. THIS is normal. That scares me. But the process itself is, well, just...normal.

So I go about my "normal" life. I suppose to someone else, it may seem odd or interesting, but I've honestly lost the vision in even seeing that. It's quite boring and uneventful. One day, you're incredibly ill and preparing to die, and the next you're going to weekly doctor visits, pumping your body with meds, and unfortunately used to the pain and abnormalities of your daily life that you feel like you're really doing nothing. You didn't die. You're alive, but still too sick to feel alive and not exactly used to not dying. Sounds incredibly insane,  I know. But not to me. I think that's where I am. Still sick, alive, and not quite used to not dying yet. Will "normal" EVER feel the same? I find a lot of doubt in that. But I believe I'm alive still to serve a great purpose for God though, so I actually really hope I'm right about that. Maybe "normal" for me was supposed to change forever. Maybe it already has. And maybe I've not only come to get used to the idea,  but also to expect it. THIS is normal.