Month: September 2015

     It must have been more than one thing that got me to this point. Whatever it was, it’s been building for years, but today just set it off. Without further explanation, here is what I am trying to say:

     I am not a role model.

     You don’t want to be me. You don’t want to be anything like me. I can see it. Even among people who know me, I hear about how they hope their lives don’t turn out like mine. I completely understand that. Who would want this?

     It isn’t enough to just be a good person anymore. Frankly, I’m not sure it ever was. My mother raised her daughters to be nice and then apologized to us for years, saying that was probably the wrong thing to do. Maybe it was. Nice gets walked all over. Nice feels guilty for being a burden every moment of every day. Nice wants to be successful not because she has delusions of being something in this world, but because she feels that to do any less would be to let down the people who made her.

     You don’t want to be me, because I don’t want to be me.

     I didn’t “conquer” my disease. I’m sure there would be some who say that I let it beat me, as if I could have just willed myself into perfect health. Believe me, I get it: there are people in this community, in the chronic illness community in general, who do things that I will never do. Who have multiple diseases, or are sicker than me, and contribute more to the world than I do. I must just be making excuses. If she can do it, and he can do it, why can’t I?

     Because willing your body into submission doesn’t work.
     Because I am not the same as anybody else, and neither is my disease.
     Because good intentions don’t cure chronic illnesses.

     So no, I am not a role model. I don’t inspire. I survive. I don’t run marathons. I walk for a few minutes and stop. And start again. And stop again. I don’t save the world. I exist in it.

     That should be enough.

    

The lovely people at NatraCure sent me a free FlexiKold Gel Cold Pack (Standard) to be reviewed. I found out I was getting one on Wednesday and it arrived on Friday! Top notch customer service. Perfect timing, too. As part of my IBD, I suffer from joint and muscle pains, as well as exacerbations of my sciatica (which is what’s going on right now.) Suffice it to say, I’m no stranger to using cold packs… and I don’t particularly enjoy most of them. This one, I’m happy to report, is the best one I have ever used.

Most of the cold packs I’ve used in the past were less than perfect: too hard, not flexible enough, too small, didn’t stay cold for long enough. The FlexiKold Standard succeeds in all four of those areas. It’s comfortable, flexible, long enough to wrap around my arm or leg, and stayed cold for so long that I didn’t have to swap it out for another one. Even better, it’s affordable. Mine was free, but I found it on NatraCure.com for $19.99, which is a great price for a cold pack this good.

Thanks for a great product, NatraCure! I feel better already.

Get your own at: http://natracure.com/flexikold-gel-cold-pack-medium.html

     I had an appointment with a “new” PCP yesterday. I say “new” because I actually saw her years ago, but I’m getting reestablished with her now that I’ve moved back to the area. Of the many doctors I’ve seen in the last four years, she is hands down my favorite. Due to her family member having UC, she understands it better than many GI doctors I’ve met. It seems odd considering I’ve seen this doctor many times before for the exact same condition… but I was still extremely anxious. This is something many chronically ill people go through, even with a doctor they’ve seen previously. Will the doctor believe me this time? Will she listen to me? It’s exhausting.

     Thankfully, she not only believed me and listened to me, she actually wanted to help. I’ve been blown off by so many doctors now that I’d be insulted if I still had any expectations otherwise. She referred me to a new GI (my sixth in four years, although one of them is still on my case as a specialist), and I feel good about it. I’m actually seeing him on Monday, so I feel like both parties are aware of the urgency of my situation.

     Unless the GI says otherwise, we’re going to keep trying Remicade and methotrexate for a little longer. I have to admit, I was surprised when one of the first things out of my PCP’s mouth was “Have you considered surgery yet?” I have, many times, but was constantly told that I didn’t want surgery this young (who does?), or that I wasn’t severe enough (by severe they mean, “you aren’t actively bleeding to death, just sick all the time and having zero quality of life, so we’re good.”) It will be interesting to see what the GI says. I don’t want to live like this anymore, and I’ve said it many times, but no one seemed to be listening until now.

     I’m a little anxious at the thought of surgery, but far more anxious about never having a life because of IBD. I’m hoping that the GI is willing to consider it and not just going to play the “you look fine, just keep taking 15-20 pills a day and suffering forever” game with me. I know I’m young, and I know that most twenty somethings aren’t exactly eager to get surgery. I’m also not eager to never have a life due to this illness. I just want someone to understand that. Hopefully, this new GI will.

     I just celebrated my four-year “anniversary” of being diagnosed with IBD. (In all likelihood, I’ve had it for at least seven years, but I was misdiagnosed for a long time.) I could write about fifteen different entries on the various problems I’ve had with this disease, but today I’m focusing on one that’s been more of an issue lately. That issue is my dreams.

     I don’t know that I would necessarily classify my dreams as nightmares. Nightmares, when I had them pre-IBD, never felt like this. They were always about tragedies befalling people I loved, or ridiculous things (like the summer before eighth grade, when I constantly dreamed about losing all of my teeth. Maybe that was some foreshadowing of my future IBD-related dental issues.)

     The worst thing about these dreams is that they’re real. Not that they are actually occurring at that given moment, of course; I have no surprise when I wake up in my bed. But the people are real. I have been to those places. Situations are the same, or worse. The worst part is that I know that they are dreams. I know this has already happened, or could never happen that way. The people are gone. I can’t go to those places anymore. But my mind takes me there every night to remind me of what I have lost.

     So it’s come to this point: the point where I hold off on sleep. The point where I research anything that will make my dreams go away entirely, as ridiculous as that may seem. Some would call this nothing, but this is only one of the many complications of IBD I struggle with, and it bleeds over into every other aspect of my life. I know that it will go away eventually, just like it did after my last flare. I know that it won’t always be this way.

     But until then, I fight my own mind every night.
    

     It’s hard measuring up in this world when you have an invisible illness. Not all of us can compare ourselves in the same ways; there are things we’ve lost and things we may never have at all. Sometimes we seem like regular people and then end up bedridden. I struggled with this for years. Let’s just say that chronic illness and perfectionism don’t go together very well.

     The world expects a lot from us. It expects us to always be in control of ourselves; our looks, our thoughts, our actions. We must always be striving to reach something greater, no matter what we have previously accomplished. Those standards are exhausting for anyone. Try having a chronic illness on top of that, and eventually, measuring yourself by these standards becomes impossible.

     Eventually, I had enough of trying to live that way. Or, more accurately, my body had enough. I’m starting to learn that when you lose almost everything healthy people define themselves by, you learn what really matters. I’m not healthy, but I’m alive. I’ve lost friends, but I’ve found some of the best friends I could ever imagine in the chronic illness community. I may not impress or inspire anyone else, but I impress and inspire myself every single day. And that is enough for me.