About 2 weeks after this, we actually did end up recording a song. I was hanging out with my buddies at a bar, I left to go on a first date with a lovely young lady from Siberia, and when I came back a few hours later, they’d written a song. They’d done it to give me a hard time about abandoning dude time to see a girl, but it was actually pretty catchy. So, after a few edits and several drinks, we recorded it. “Siberian Dream” by The Rabbits is a rough, yet savory jam that you’ll probably never hear. I’m very ok with that.
Month: June 2017
Seasons of Sickness – The Crohn’s Saga Part 52
Being sick sucks. One of the things people don’t realize about Crohn’s is how long flares last. People are familiar with the flu, so they know what it’s like to be down for a few days or weeks. A Crohn’s flare lasts months or years. Once the symptoms start, you typically give it at least a week or two before you talk to your doctor to be sure you’re not just having a rough few days. After that, there are tests, which also take a few weeks. Then, once the test results are in, you have to play with meds. Sometimes it’s tweaking dosage and sometimes it’s trying a new drug. You then usually need to wait at least two months to see if the new drug regimen is working. If it is, then you’re better. If it isn’t, you need to start all over again with a new drug. If none work and you’re in too bad of shape, then it’s surgery. However, even that isn’t a guarantee.
Even though I’m about six months ahead of the comics, I’m still in the flare that’s been the basis of The Crohn’s Saga. I’ve been sick for two years now and I’m actually due for my second surgery in a few weeks. I’ve hit the point that I don’t even remember what it’s like to feel good. I try not to think about it. I try to stay positive. But I also have to admit that it messes with me sometimes. Like I said, being sick sucks.
Good News – The Crohn’s Saga Part 53
When you’re years into a Crohn’s flare and blitzed by medication, any improvement is good news. As you saw in Let’s Play a Game, sometimes the side effects of medicines are as nasty as the original symptoms of the disease. This is how I spent October 2016 and it was wearing me down. The high doses of prednisone and cyclosporine were taking their toll on me and I was seriously beginning to wonder how much more I could take. However, progress is still progress. It’s important to focus on the wins when you have them.
That said, of course this is tongue in cheek. I was happy the bleeding stopped, but dang. Between the constant shaking, fatigue, vomiting, and diarrhea, I didn’t feel like I would ever recover. Such is life with Crohn’s.
There’s Got to be a Better Way – All Sorts
There’s got to be a better way to buy glasses. Those of you with good eyesight and those of you who are far-sighted won’t relate, but this is a regular pain or those of us who are near-sighted. For the uninitiated, buying glasses typically starts with an eye doctor appointment. This takes about 10 minutes and is necessary to check both eye health and your prescription. When the appointment is over, you will be given a new prescription, which means you’ll need new glasses.
Eyeglass stores are fun. There are lots of shelves containing different styles of frames for men, women, unisex, kids, and sunglasses. Most places also have a ton of mirrors so you can try on different styles until you find the look you like. The frames all contain non-prescription lenses that are then replaced with your prescription once you make the purchase. However, that’s exactly where the process breaks down for us nearsighted folk. Without our prescription lenses, we can’t see what we look like. I can see clearly within a foot, but beyond that, everything is blurry. This means that when I try on glasses, I have to bend over and get very close to the mirror.
Maybe this doesn’t seem like a big deal, but think about it. These things will be on my face every day and they will be seen by everyone who looks at me. I can be confident about how they look when I’m crouched down within a foot of a mirror, but beyond that, I have no idea how they look. This means that I have no idea how I look. Do the fit my face? Do they fit my body type? Do they match the colors and styles of clothes I like to wear? I have no idea.
And so, I formally declare that there has to be a better way. Let’s get on it, eye glass vendors.
Existentialism – The Crohn’s Saga Part 54
Don’t worry, I’m not going to go into a diatribe about Existentialism here. I will say that for me though, Existentialism starts with an awareness of mortality. It’s not a topic we really discuss as a society and I think that’s too bad. We are all mortal. We will all die some day. Most people think of that as a downer, but I think of it as a challenge. When I was a kid, the army used to air commercials that would ask “if someone wrote a book about your life, would anyone want to read it?” I never joined the army, but I took that question seriously.
I think about death every day. Most people would be upset to hear that, but those of us with a chronic disease are forced to consider it regularly. As our bodies fail, we feel our mortality, almost as though it’s a presence. We don’t get to decide whether or not we’ll think about death. However, our real choice lies in what we do with that awareness. The inevitability of death and suffering has led me to do the things I’m most proud of in my life. It’s forced me to make the most of my time and my health while I have them.
The societal taboo is far reaching though. Like a lot of Crohnies, I’m in counseling. When most counselors ask if you think about death or suicide, what they are really asking is do you plan to kill yourself. This is necessary, but it’s a shame that the conversation usually stops there. The better question would be if you were to die now, how would you feel about your life? With the amount of pain and suffering that Crohnies endure, we’d be idiots if we didn’t think about suicide. It’s an escape that feels like relief. However, I think awareness of that as an option is actually a positive thing. Of course I could kill myself and end my pain, but every day I’m choosing not to. Every day, I am choosing to endure. Every day, I am choosing to be alive. That choice gives me comfort. It means that I want my life. Isn’t that a better answer than no?