WARNING: In case you couldn't guess from the title, this post is gonna be a little ugly. If you don't want to hear about it, don't read it. No worries, I won't be offended. Only read on if you are ready to hear a bit of frank talk about some gross stuff.
Okay, you've been warned. I'm not kidding.
Still reading? You're brave... here goes.
So... I'm incredibly frustrated. I've had to change Squirt's bag a million times since yesterday afternoon. Here's how it works: there is a sticker type thing with a hole in the middle that fits around Squirt to protect my skin from my poo (which, since I have no colon to absorb water and digestive enzymes, is VERY caustic). there is a little round flange on the sticker. Then there is a bag to collect my waste that attaches onto the flange sorta like a tupperware lid snaps on. I'm having problems with the sticker not sticking so well. That means that my waste leaks everywhere, makes a huge mess, and digests my now raw and bleeding skin. I don't really know what I'm doing wrong, because I'm not doing anything different. Until yesterday, the last few bags I've had have lasted for about 4 days (they are supposed to last from 3-5 days) without any leakage problems. Yesterday, I used up all my bags because they kept leaking. I'd take the leaking bag off, gently clean the skin around Squirt while Squirt um, lived up to his name, make sure the new sticker was shaped properly, attach it and hold it in place for a few minutes, and finally, snap the bag on. This takes about fifteen minutes. Shortly thereafter, it would start leaking. By yesterday night, I'd put on the very last bag I had and had an unenviable pile of laundry.
No problem. I ordered a bunch more bags a week ago, and they arrived at my parents' house on Monday. Last night, when I realized I was on my last bag, I called my mom and asked if she'd be able to do me a huge favor (as I am carless this week - lent it to Andrew since I don't really need a car, and his is still broken) and drive the package down to me. She agreed. She arrived this morning when I had a two-hour break, and I opened the envelope... and it wasn't my order. It was a free sample. It was also the wrong size - the hole in the middle of the sticker is too big, so it won't protect my skin properly and will leak. So now I'm on my last bag, and I have no back ups. Oh, and this bag was beginning to feel like it was going to leak.
I called the company concerning the whereabouts of my order. Unfortunately, they apparently do not accept my insurance, so they didn't mail my order... but they neglected to inform me of this. I was a little confused because I had talked to them numerous times over the past few weeks, and was assured that they did work with my insurance. They had called and said they had confirmed my insurance and told me what my copay was and everything. I had given them my debit card number and ordered and was told I should have everything by last Friday at the latest.
Now, however, they won't send it to me unless I pay like $200! If you consider what I'm using these supplies for, the price seems a bit ridiculous. I got off the phone and started bawling... I just was so tired of dealing with everything. Between Squirt leaking everywhere, having a UTI, and the newly created J-pouch giving me a little trouble (feels really full and uncomfortable, and I have to um, empty it, which is like pooping, several times a day, but since they messed around so much down there, I can't tell what to um, unclench, which is rather amusing), it seems like my life is revolving around not being in control of my bodily fluids and dealing with them and the discomfort that creates. It's just no fun and gross and humiliating and I'm coming down off steroids, so I'm incredibly emotional and just can't handle it today.
I pull myself together, and my sweet mom drives me back to school for my next class. In the middle of class, I look down... and yes... yes, it is true. My bag, the last bag I have, is leaking all over the place. I am so, so thankful that my dear Mommy was still around. She picked me up, and took me home. I changed my bag AGAIN (using the ill-fitting bag) and I found a pharmacy in Fort Worth that sells ostomy supplies. She took me over there and I was able to find and purchase some supplies at a fraction of the cost that the company was going to charge me.
While we're at the pharmacy, I start feeling really shaky and light-headed and sweaty... fortunately sat and put my head down and didn't pass out. Yes, folks, between this and the emotions, it's safe to say that the steroid withdrawal has officially begun.
Because of the bag change, and pharmacy detour, and the dizzy thing, I arrive half an hour late to my next class. How do I explain this to my professor? I just didn't say anything. I have no idea what I'd tell her.
So now, the bag I put on this afternoon is beginning to seep stuff onto my skin, which is really raw. This feels rather uncomfortable, and is the precursor to a leak, I have learned. I know I should just change the bag... again... but I just don't want to deal with it. I mean, I'm going to go change it right after I post this, but I am just so tired of dealing with this. Peeling off the sticker and changing it will just destroy my skin a little more. And I have no confidence that the new system I put on will actually stick. Oh well. It took me until I was two and a half to get potty trained, so there's a learning curve here with this, too, I'm sure. If you would, could you pray that God will help my heart? I am clearly struggling a bit with my attitude and emotions. I guess this means I'm probably angry with God again. Also, if you think of it, could you pray that God will allow the bags work a little better?
Don't get me wrong: I have no regrets about having surgery. I woke up this morning feeling well-rested, in zero pain, and hungry! Before surgery, I can't remember the last time any of those things happened. I feel so energetic and I can eat and I can live life without pain and it's amazing. But the reality is, I've traded a disease involving pain, suffering, and sickness for an altered lifestyle with some inconvenience and sometimes, like today, humiliation. I think it was a good trade. I think it's totally worth it. But that doesn't mean that today was fun or easy.
I guess that I just have new battles to face. And it's what I'll do. Keep fighting. God will allow me to figure it out and make it work, just like He's, at times, allowed me to keep diving and going to school and live and put on a happy face when I've been up all night being sick and hadn't eaten anything solid for days. Just like I fought through a three-week hospitalization from a horrible flare plus pancreatitis and returned to TCU the first school day after being discharged. Just like I dove at a meet an hour after getting discharged from the hospital for an iron infusion because my blood counts were so low from internal bleeding. Just like I've made A's on tests when I've been so dehydrated and in so much pain that I had tunnel vision and had to focus on not passing out. Just like I would do a dive, go heave in the bathroom from medication so toxic you have to wash your hands after touching it, and come out and still throw my back and gainer two and a half off 3M. Just like I made it through organic chemistry labs and coaching diving during an arthritis flare where I literally could barely stand and couldn't so much as grip a pen.
I mention all these things, not to brag or highlight my stubborn stupidity, but simply to remind myself that I've been through much, much worse things than I went through today. This is going to be my new normal, and it's much better than the old normal. It's just different. I've had to push myself in very hard ways for the last few years. Now I have to learn to discipline myself emotionally and spiritually and in other ways. It will just take a little time to figure out. God, who has brought me through so very much, will bring me through this as well, and will use it for my growth and His glory.
I've mentioned before the reminders to myself that I keep on my desk. One of them is "Trust God in big AND little things." For me, it's easy to fully rely on God when I literally need His strength to remain conscious or stand up or get out of bed. I have no other choice. But sometimes, with the little things, like the leaks and a company bungling my order, I have a much harder time trusting God, believing that this is a part of His sovereign plan for His glory, and reacting in a way that honors Him. This is why God reminded the Israelites over and over again not to forget Him in the good times, when all was going well. God recognized our tendency, as humans, to trust in ourselves and in others when things aren't so very bad. But it's so crucial to trust God in the little things. It's radical and different and a great testimony to others if I can trust God with my emotions and my bag changes and not become angry. I failed at that today. I want so bad to honor God especially with the little things. I pray He'll forgive my falling short today, and that He'll renew my mind to trust in Him fully... even as I deal with poopy stuff. ;)
So today wasn't that bad. Really.