A Game Of Crohn's

One of my favorite games to play with several immune diseases is “what the fuck is wrong with me today?” Every single day of my life. I haven’t been able to drag my ass around for three days, and when I actually attempted to do something today, I immediately vomited after climbing the stairs. This might shock some people, but for me it’s somewhat in the realm of commonality. It’s so “normal” for me that I take a medication that people take for heartburn (strangely, it really does help with cutting back on the upchucks, even though I don’t really have an issue with heartburn or indigestion), and I have *another* “rescue” medication that I’m sure a lot of people are familiar with if you’ve pushed out a child or if you’ve been given some heavy pain meds at the hospital - Zofran . Normal patients get it a handful of times in their lives - I have a regular prescription for it, and the bottle is literally sitting about six inches away. I even have multiple forms of the pill (so...

Every time I go to Rochester it costs me a significant chunk of change, no matter how I cut it. If I stay in a hotel, if I make multiple trips in several days - however I do it it - inevitably costs money. Money I don't have because I have my check budgeted to the penny every single month. My bills are paid, I have my few luxuries (not really many though - I can't help but think of how many cups of coffee that I could be spending it on instead). But, I digress. The point is is that Rochester is expensive. It's a three hour drive there, and if I stay in a hotel, it's three hours back. And if there's an appointment the next day - which there usually is - I get to make that six hour trip again. Dolla dolla billa y'all. To put in my gas tank.  Within minutes of me posting my second stem cell research update on Friday, a family member had taken care of a hotel room for me on surgery night so I didn't have to drive nine hours on a freshly cut upon bum. In...

Back in December when they told me that I was on my way to Eau Claire to have an emergency surgery on a new abscess, I knew this day would eventually come. I’m beyond *thankful* that this day would come. When I did my first stem cell transplant - from stem cells grown from my own belly fat! - I was one of 28 subjects that signed up to put themselves through a serious, 2-year commitment (possibly lifetime, if you’re down with it) to be humiliated in ways that you haven’t even imagined. I’ve had my behind taken pictures of like it was Lady Gaga - I’m not kidding. HUGE paparazzi type cameras, that have the added bonus of popping up *immediately* on the computer screen which I can see clearly. SMILE! You haven't learned to smile with that muscle yet?! C'mon!! I’m not sure many humans are quite so aware of what that part of their anatomy looks like - in multiple forms of healing, mind you - as much as I do. And if they do, I don’t really think I want to hear abou...

I know. I know. It’s been an eternity. Back in December, my health took a left turn into ShitTown, as it likes to do, and I ended up with another surgery. With more complications. And that’s just crohn’s. After I got home, I had an incident around the tail end of the year (I would rather not discuss it at the moment, obviously I’m alive and kicking, but it will all be part of a long - ass description, and I don’t know exactly the outcome yet.) I don’t know the outcome for either incident. I would imagine that I would have stem cell surgery all over again for my surgery in December. That is 100% speculation on my part, although I absolutely will see my Rochester team here soon. I have three tests pending that I cannot get done. Every time that I have one scheduled, it’s -58 below zero, or there’s 3 feet of snow on the ground (twice). HOPEFULLY I’ll be taking care of that this week. Because it needs to be done. I need to work out what the fuck is going on with m...

Just to give you some background, he moved out in the month of August, and he took his sweet time doing it. He promised me that he would clean the apartment (he did not), he promised that he would leave me furniture (it's junk, and mentioned below), and I thought that he was a good friend. I did nothing but bend over backwards to make sure that he had a safe, loving space for his two children, and this is my repayment. Any time I talk to him on the phone, he gets butthurt, asking if we're going to be friends (I'm kind of monosyllabic, I can't help it), and I just wanted him gone. This finally happened, but there were many issues, which I felt like I needed to write a letter about. I don't know if I'll ever give it to him, but there is a catharsis is writing it (and letting all of you read it). I should also note that because of the way that my apartment is designed, I was left with absolutely no furniture, and only because of my sister Jen and Benana am I ...

Never in a billion years did I think that I would be writing another Rockstar Piercing blog post. Which should have been my first indicator that my hubris would be punished. So now there could be endless Rockstar Piercing blog posts! Who knows?! If you’re new and need to catch up, I’ll help you out and link you: Part 1 , Part 2 , and Part 3 ...mostly because I am lazy and I do not want to explain what a Rockstar Piercing is again. Suckers! I put the picture in here anyway! If I have to live it, you can look at it. LOOK AT IT AND KNOW MY SHAME! So, if we’ve all been paying attention, since the stem-cell placement I have had an open tract that has stayed open despite attempts to treat it, mostly using silver nitrate (literally burning my ass with chemical matchsticks every other week). My Rochester surgery/gastroenterology team has watched it via MRI and nothing has changed. They’ve also checked me with another colonoscopy (yay!) and added another medication. ...

Sooooooooooooooooooooooooooooooooooooooooooooooooooooooooooo…. I’ve been sitting on (hahahahaha butt jokes) a version of this post for some time. I’ve gone through a nice little run-through of all the emotions in the past four months, thus my blog silence. I’ve also been writing elsewhere, and no, you can’t read it (yet). A friend of mine nailed it on the head, first guess - I’m looking at you, Kelly - but I’m not going to talk about it and that delay - it’s totally not worth the blog space. Not even close. Instead, we’re going to go over the fact that January 24th marks my SIXTH colonoscopy. Stop and absorb that. 1 2 3 4 5 SIXTH. FRIGGING. COLONOSCOPY.  I’m 37, y’all. I do not want to hear ANYONE complaining about getting one. GET IT DONE. The reason for this one (other than the fact that crohn’s patients usually average a colonoscopy a year, and I didn’t get one done last year - score) is to check for active disease, because things have been...well, actin...