Monday, December 27, 2010

I have Crohn's Disease and I don't like it

So I was talking to a good friend of mine about a month ago and he asked me why I hadn't blogged in a long time. I told him I had nothing to say. He said " Bull@#$%. You have a lot to say." He told me I needed to get writing again. My counselor told me I needed to get writing again. Everyone has told me to get writing again, but I wasn't ready. I had retreated into my turtle shell. I didn't want to talk to anyone. I didn't want to face anyone. I didn't want to face the fact that I had Crohn's, but the fact is, I have Crohn's and it is not going away, so I can avoid doing research, avoid getting support, avoid people close to me that care and get nowhere or I can start facing this and get on with my life.

One reason I haven't really wanted to talk about it or write about it is because I did not want people to think I was feeling sorry for myself or having a pity party. As it was when I did try and open up to some people they said to me, "It could be worse." As much as I agree with that, it made me feel like because I didn't have cancer I shouldn't be complaining, so as people said that to me I started shutting down.

So here it goes. I am mad. I am really mad that I have Crohn's Disease. I was over 300 pounds, morbidly obese. I was told that I needed to lose weight or I could die, so I worked my butt off literally and lost 106 pounds. Now, I'm 106 pounds down and the sickest I have ever been. It's so ironic cause I'm the healthiest I've ever been in some respects and the sickest in other respects.

I'm mad because, due to steroids I have been on, I have gained 30 of those 106 pounds back. I know everyone tells me that it's not a real gain, but to tell you the truth I have started using my restricted diet and my steroids as an excuse to eat bad. I know the steroids are messing with my eating, my sleeping, and my mind, but it has become an easy excuse to do what I want. The steroids along with the restricted diet have been a major downfall for me and I"m mad that I have let it become so easy to overeat. I have started back with the excuses that I used to have at the beginning of my journey. I don't like it and don't like how it is making me feel. That is why TODAY I decided to write about how I'm feeling to start getting back to where I need to be to do an 1/2 Ironman and eventually my Ironman. I need to get refocused on my goals.

My coach has given me several leads for Crohn's support, friends have told me about people that are willing to support me, I have had many links sent to me, books for me to read etc. I haven't taken advantage of any of this cause that would mean I would have to admit to having Crohn's. I don't like having a disease that I cannot control. I could do something about my weight. I can't do anything about my Crohn's. Crohn's is not curable, just manageable. This is something I have to manage the rest of my life. I don't want to have something I have to manage the rest of my life, but it's not going anywhere, so it's time to get off my butt and do something about it.

Since being sick, which I have been since the end of August, I have noticed I am not the same athlete I was. I used to be able to work out for hours on end. Now there are times after 30 minutes I have to call it quits. There are times in the middle of my workout I need to stop and go to the bathroom and am in there for at least 20 minutes. I tell you after stopping workout for a 20 minute bathroom break it is very hard to get re-motivated to get out there and going again. There have been several times that I have cried in the stall of the YMCA bathroom. I know I will get back to where I was, but it is a long journey and I don't like the set back, but what am I going to do just not workout, give up on my Ironman dream? No way.

I have a friend, Andy, who in the past has told me to SUCK IT UP BUTTERCUP. I have other friends tell me to FAKE IT UNTIL I MAKE IT. It's time for me to do this. I need to acknowledge my feelings, but not let them bring me down and so far I have let them bring me down and if I'm not careful I will let it spiral out of control and I have come too far to let that happen.

So I have Crohn's. There are a lot of other people that do and are living productive, active lives. I don't have to like the fact that I have Crohn's. However, I do need to embrace it, learn all I can, and learn how to live with it while being active and training to become an Ironman. My goal is to still do Ironman Wisconsin in 2012. I hope that will happen, but if I have to change the date that's ok and if my health doesn't permit me to do that distance I'm going to be ok with that. I'm not ok with that now, but I will be if that is the case.

I talked to my counselor recently about how I felt really anxious about the possibility of not being able to do an Ironman because of my health. Ironman is what I have talked about now, for the last 5 years. It has been a goal of mine since then and is so close to becoming a reality. What if it is taken away from me? What if I can only handle the half Ironman distance? He then made me realize, through some lengthy conversations, that what I liked about doing an IRONMAN is not necessairly the Ironman per-say, but I liked the idea of the person I am becoming on my way to Ironman, and who I will be when I step up to the starting line. Yes, I want to do the distance, yes, I want to hear them say, "Melissa, YOU ARE AN IRONMAN," but when it really comes down to it, I really want to become the person that can do those things. Whether or not I will ever be able to do the Ironman distance is still yet to be determined, whether or not I can become the type of person to step up to the start line is already determined, I can and will become that person. (It was hard to put this last paragraph into words so I hope you understood what I was trying to say.)

A little update on where I am with my Crohn's care. I am currently getting weaned off my steroids and will be completely off them by the second week of January. I am on a Crohn's medication that I am hoping I will respond well too after being off the steroids. I am seeing Dr. Cohen who is out of University of Chicago and is one of the best Crohn's doctors out there and the center I am going is ranked nationally for it's research and treatment of Crohn's, so I am in good hands. I will keep you not only posted on where I am mentally with all of this, but also how my treatment is going.

So this is just the start of my blogging again. Here are some goals for this week:

1. Blog at least 2-3 more times.
2. Start logging my workouts again for my coach and my eating.
3. Get all the junk,that snuck it's way into my house during the holidays, out of my house.
4. Get back to the gym regularly and not give myself a hard time if I cannot work out as hard as I used to. I'll get back where I need to be.


Jackie said...


You are one of the strongest women I know! You and Dar have really inspired me with my weight loss. So far, I am down 30 pounds! I will be praying for you. I'm sure it's not easy, but with GOD and support fropm family and friends I know you can do it! Let me know if I can do anything to help :) Love you!

Anonymous said...

hmmm, get your ass in gear and I am proud of you. Now go running

Anonymous said...

Melissa - great job on getting started again. You have your head in the right place - now we just need to see if your body can keep up.

I agree with you completely about the feeling of Ironman - you are right!! I was just trying to explain this to someone else the other day.... it's everything that leads up to that event that counts - race day is the fun part.

Ironman isn't going anywhere - I'm guessing one day (hopefully in '12) you'll hear your name loud and clear as an Ironman.

Keep up the good work! Holl

Shelley Moore said...

Melissa, I'm so glad you're back to blogging! I've missed reading your posts... I have to tell you that you really inspired me to get on my own journey to IM, so PLEASE don't give up! I know your setbacks are emotionally devastating (I've gained some weight back too) but you can conquer anything! One of my favorite sayings is the WIll of God will never take you where the Grace of God will not protect you. So just keep leaning harder into Him, and He will carry you through your journey! WIll certainly keep you in my prayers!

ShesAlwaysWrite said...

Big hugs, sweetie. I understand how hard it is to accept the possibility of postponing the Ironman dream.

MJ Volkers said...

I was reading your post on facebook and as always, your transparency is refreshing. Remember it is a journey you are on and it wil have many hills and valleys. The fact that you choose to remain on the journey makes you the phenomenal person you are; the kind of person who is capable of making it to the ironman.

As I was reading, I couldn't help but feel that perhaps this is more of a spiritual battle than a physical one. It reminds me of times in my life when I had a plan and a goal was working hard and tracking and things I never saw coming came crashing in (uninvited, of course). When this has happened, it has often turned out to be a spiritual thing rather than physical. Perhaps Satan wants you to be discouraged and to see you fall. Or perhaps there are some lessons that need to be leared that you will learn best this hard way. (I think those are the most common for me - unfortunately, I am a very slow study!) I have no idea what God's plans are in your life, but I know He holds you in the palm of His hand and NONE of this is a surprise for him. So hang in there! You're in good hands!

Anonymous said...

Thanks for the post! You've been through the wringer. I probably would have reacted the same way as you, if it had been me. Sometimes it takes time to mentally wrap our minds around things, esp. rough stuff. I look forward to your next blog.

fitncrafty said...

This journey is SOOO hard!! Crohns is is very manageable.. especially with the healthy lifestyle you set out to lead. Education is the key to action with crohn's... You have done so much already and you can do this too.
Hang in there.. it's about the journey not the destination...
Hugs to you!

Hilary said...

You have no idea how much you inspire me. Keep up the good work! You are an amazing person!

Anonymous said...

I have Chrons. I'm a competitive athlete on several meds now, more previously. Life has changed. More complicated. More rewarding in many cases, some not in all the ways you already know. I listen to my doctors, and most importantly, my body as it talks to me now and I am listening more than ever. Regardless of your challenges, successes in every flavor should be savored more than ever. Don't let the meeds and side affects distract you from overcoming challenges as they are your successes. Even passing on a candy bar or pizza (which is kryptonite for me). Realize the adrenaline rush from exercising as your reward for everything else you have to do to achieve it. Continued success. Adamm

Melissa said...

Thanks so much Adam. I would love to get to know you better and your journey. Please email me of friend me on facebook. My info is on the side bar of my blog. Thank you so much for the encouragement. It means a lot.

Anonymous said...

Stumbled across your blog today. I'm a 29 year old woman with Crohn's, diagnosed when I was 19. Prednisone, hospitalization, fistulas, and now Remicade. All I can say is, stick with it. I did my first half Ironman last summer, and am two months away from my first Ironman (with a Remicade infusion the week prior). Do what you can on a daily basis--if you're feeling good, give it your all; if you're not, listen to your body instead of your training plan. Like you, I'm mad that I have Crohn's, and the best way that I personally can deal is, while respecting my limits and challenges, by not letting my disease define me and my limits. Relentless pursuit :).