2013 Race Plans

I believe I started writing this post on January 1st. I mean, what better day to start planning my 2013 than on New Year's Day!?!?

We'll start with the very little of that blog post that I started......

Guess what I did yesterday??? I made a training calendar to get myself back on the wagon! The other night I started looking at races to put on my calendar for this year. What I'm listing now is what I've made so far, but I hope to add a few more. Problem is, racing is not cheap. And, distance racing is even more expensive! It'd be one thing if I wanted to do a bunch of 5k's, but no, I like to do 10k's and above.

So, here is the list of races I have on my wish list thus far:

Twinsburg Indoor Triathlon - February 17th
Towpath Half Marathon - April 7th
Cleveland 10 miler - April 27th
Cleveland Half Marathon - May 19th
The West Branch Battle Sprint Tri - June 9th
Towpath 10-10 - June 16th
Vermillion Oly Tri - August 17th or 18th (need to confirm date)
Towpath Marathon (Full, Half or 10k) - October 7th

And now, here we are on January 23rd and things have totally changed. No need to rehash old news, but if you don't know what's happening and want to - you can read about it here and here.

So things have changed. I actually have no idea what I'm going to be able to do this year and I HATE that. If you know me personally you know that I'm a planner. I'm guessing that even if you only "know" me through this blog, you've probably come to realize I'm a planner. It's not something I hide and actually I take pride in my ability to plan things.

However, what I don't take pride in is the way I react when I can't plan (i.e. control) things.  It gets ugly people. And here we are....

Crohn's Disease sucks and it fought me almost all of 2012. Most people weren't aware and I guess you can say I was winning. I mean, even through a flare that was seemingly lasting the entire year, I was able to power through and complete almost all my fitness goals. In some ways, finishing my first 26.2 in 2012 means more to me now than it even did on October 21st. I didn't realize quite how sick I was from this disease until about December 29th...and even then I didn't have a clue. But, I digress (as usual).

So happy...

But, for now, Crohn's Disease has taken over. I will not say it has won, because it hasn't. But, for now it has taken the lead. I can't do things I was once doing (like, say, walk up the stairs without getting winded) and I can blame it completely on Crohn's Disease. Clearly I've been struggling with this. I'm trying my best to deal with the fact that after being in the hospital for 1 week and home for 2, I'm still only slightly better. Today is a good day and I'm focusing on that.

A happy, tired Oly Tri finisher....I will be this again soon...

2013 race plans..... I can't make them right now and that sucks. But, I hope that several of those races listed above become reality anyway. 2013 is likely not going to be a year of great PR's for me or a year with many races. However, 2013 is still going to be a year that has races in some capacity. It will be a year of renewal. A year of healing. Hopefully a year with no surgery and with this damn disease going back into remission.

I guess one can say this year is going to be a race of different sorts for me. A race to better health. Perhaps 2013 is going to be the year for my weight loss. Whatever it is, I am bound and determined to make 2013 a good year.

HOME!!

I have never been so happy to be home as I am right now.

Biggest pet peeve. If you have the disease or if you are a medical professional who deals with people with the disease, LEARN HOW TO SPELL IT!!

Exactly one week ago today I walked into the Cleveland Clinic Main Campus to "get some IV steroids for a few days and end this damn flare". I was actually happy to be hospitalized and hopeful that within 24 hours I would feel like a new person; and within 3-4 days I would be back home and fully in remission.

Why wouldn't I think that?? That's exactly how it went down in 2008. It got bad, the oral meds weren't helping; I went to the hospital; got better; and stayed in remission for almost 4 years.

As you all know; this is not how it went down.

The medication started late Thursday/early Friday morning (around 1AM). Friday came and went and I was still having a lot of pain and blood. Saturday came around and they sent me for a procedure to take a look. Luckily not an entire colonoscopy. However, the "prep" for the sigmoidoscopy was so painful I could barely take it. The found that my colon was "very angry!", but still had hope that the IV steroids would start to kick in.

Blood to make me feel better....vampire??

Then it was Sunday and there was still no change. In fact (as I already mentioned in my previous post), my blood counts continued to drop and they eventually gave me a blood transfusion. The blood definitely helped my energy levels and I did start to just feel better, but all the other symptoms were still there.

The doctor came to do her rounds on Monday and told me that she felt it was time to get a surgical consultation. I lost it. This flare that I thought was going to get better after a few days was now still not better, and potentially resulting in me having to have my entire colon removed.

She explained that it seems to be presenting itself as potentially "just" ulcerative colitis, which would mean that the surgery could potentially cure it. However, its currently unclear as to what my disease actually is and there is no real way for them to know until the entire colon is removed. Great.

She also said there were other medical options that we could also explore. We discussed Remicade and she told me to start researching since that has its' risks and side effects as well. This was no easy decision. No one wants to lose their entire colon, but when someone makes it sound like this could be a permanent fix - no more flares, no more medicine - it ends up sounding like a good option.

Problem was (and is) - that no one has a crystal ball. That sucks. What's the right decision? Remove my colon and find out that it actually is Crohn's and the disease comes back anyway?? Take a medication that may or may not work, that could cause cancer or other things?? Not an easy decision.

Thankfully my family was able to speak with me and made me realize that we haven't exhausted the medical options and I should not "rush" into surgery (a very serious surgery) without being more conservative first.

My mom brought me a friend on Wednesday.

So Tuesday I asked my mom and husband to come to the hospital so they could listen to the surgeon as well. They were there when the GI doctor did her rounds and it was helpful. What they heard her saying was "try Remicade first", which was not what I heard the day before (I think she changed her story when I asked her what she would have me do if I were her daughter). She was careful to never actually say, "I think you should"....but, she did say numerous times, there is nothing wrong with being conservative.

She explained that we should know if the Remicade is working within the first 3 infusions - so about 6-8 weeks from now. I was (and am) overwhelmed at the thought of still being sick for another 6-8 weeks when I let it go so long to begin with. But, I'm starting to just be hopeful that it's going to work and I'm going to start feeling better tomorrow.

So, I was discharged this morning and completed my first Remicade infusion this afternoon. I'm happy to be home and hopeful this will work. The other stressor currently is due to the fact that I am such a tough stick that I had to be given a PICC line......but I can discuss that in another post! :)

2013 Goal #1- in progress

I will apologize in advance for how this post might come through . I' m writing it using my awesome new kindle! 

Here I sit in a hospital bed at the Cleveland Clinic, working on my first goal - take care of myself . 

As I suspected, this flare that I've been trying to fight for most of 2012 finally got the best of me . Last Saturday I started to realize just how fatigued I was . I spent the bulk of my day laying on the couch & sleeping . I attempted to play soccer that night, as I usually do on Saturday nights . Now, it's no secret that I haven't been doing much activity since the marathon, but I was playing soccer every Saturday night.

Last Saturday was different though. After spending the bulk of my day doing nothing, I was so exhausted I could barely catch my breath. My chest didn't feel right and I just didn't feel good. I didn't have to work until Wednesday due to the New Year. I pretty much spent the rest of my long weekend laying around doing nothing. 

Wednesday rolled around and all I had to do for work was sit and write reports. This exhausted me. I couldn't explain it, but I just didn't feel good. I was texting with SIL and she suggested I may be anemic from all the blood loss lately. I took her advice and called my doctors office. 

A doctor who was not my normal doctor called me back that evening. That conversation wasn't much help. He basically said I was probably anemic, but that he didn't really know how to treat me since he didn't know my history (other than what he read). However, he thought it was ridiculous that they hadn't been able to get me in with anyone until the end of January. He told me that he would leave a note for the office that I must be seen. I got a call Thursday morning saying that I could be seen that afternoon. I said I will make it work. 

I went and got some blood work done prior to the appointment. Then I saw a doctor who was not my normal doctor, but he's my new favorite! I told him my story, he told me how low my blood count was and that I wouldn't be going home. well, not really, he said I should go home and pack a bag and wait for the phone call from the hospital.

I arrived here Thursday around 5ish and currently have no idea when I'm going home. They transfused me with 2 units of blood because my counts kept dropping. The blood has helped me feel better, but the Crohn's continues to be a bitch. I continue to have pain and blood, but, I suppose we're on the upswing. I knew it was going to take a hospitalization to make me better and here I am. Working on getting me healthy.

So that's what's happening with me at the moment. Hope you are all having a better start to your 2013!