Ready or Not

I can’t wait to get back to blogging regularly. I have had SO many adventures these past few weeks, some I can share and some I cannot, but all really great stories that I can’t wait to write about.

In the mean time, I’m trying to rest for the big race tomorrow. Apparently, my body is ok with that since I fell asleep everywhere I sat down yesterday.

Airplane ride...zzzzzzzzzzz.

Airplane ride…zzzzzzzzzzz.

But this weekend is all about something you guys have been reading about forever. Tomorrow is my first half marathon with Team Challenge. This race isn’t about me.

This race is about everyone who has been touched by Crohn’s or Colitis.

Taking Steps with friends for all of you!

Taking Steps with friends for all of you!

This race is about all of you who reached out and shared your stories with me about you or your family member or a friend with IBD.

So many cupcakes, so little time. And all for a great cause!

So many cupcakes, so little time. And all for a great cause!

This is about my friends who can’t participate in their lives because they’re too sick.

This is about the runners who trained for this race but who are sidelined because one of the major side effects of IBD drugs is that it makes you susceptible to every other virus in the world and OF COURSE you came down with pneumonia this week while on Remicade.

Wish you were here in Chicago with me!

Wish you were here in Chicago with me!

This race, for me, is a love song to my family, to my friends, to my doctors and surgeons and nurses and PAs and RDs who fought like Hell alongside me. And this race is about all of YOU.

You who ran the Virtual 5K and donated to my fundraising page and helped me become the ONLY VIP fundraiser from the Greater New York team.

Party! Party!

Party! Party!

So, THANK YOU! I look forward to running my heart out tomorrow with all of you on my mind as I push for another PR in Sweet Home Chicago.

And by the by, you can donate through TONIGHT to still be entered in the amazing raffle I’m having. $20 = 1 raffle entry. Donate here immediately  You do not want to miss out villa for 10 in Acapulco. And who knows? I may just hit $8000 by the time I toe the line at 7am Central Time tomorrow.

You never know.

You never know.

Now go out and run!

Better Than the Alternative Tuesdays: Forward

This year hasn’t flown for me where school is concerned. The opposite, in fact. It has CRAWLED.

Whatever is slower than a snail, that's what this year has been like.

Whatever is slower than a snail, that’s what this year has been like.

But when I look back at exactly one year ago today, it seems like it was only a few months ago and not twelve. One year ago today, I spent most of the day under anesthesia, in the OR and recovery room, having my colon removed to cure my Ulcerative Colitis.

Sent this the day after so Obi-wan didn't worry so much. See Dad? I'm smiling = I'm ok!

Sent this the day after so Obi-wan didn’t worry so much. See Dad? I’m smiling = I’m ok!

What a difference a year makes.

Last year, I couldn’t run 2 minutes on the treadmill before I had to jump off and race for the bathroom. Last week, I ran a PR in the half marathon. 1:40, thankyouverymuch. Oh, and I’m gonna kick ass in Chicago running for Team Challenge in three weeks!

Jersey, baby!

Jersey, baby!

Last year, I was so sick I was getting chemo pumped into my veins, iron IVs, and hydration solution every week. As of right now, I’m only on one drug, soon to be DRUG-FREE!(This probably means very little to anyone but Mrs. Obi-wan. Look, ma! No drugs!)

No more blogging with one hand and getting Remicade in the other!

No more blogging with one hand and getting Remicade in the other!

Last year, I missed just about every single running/walking/sporting event with my friends. This Thursday, I’m walking in lower Manhattan with my lululemon family and friends in the Taking Steps walk to spread IBD awareness. (Join me!)

Go ahead, ASK ME!

Go ahead, ASK ME!

Last year, I was terrified I wouldn’t make it through my first year of DPT school because of the two surgeries, the colostomy bag, or some other unforeseen disaster. Not only did I conquer my first year of school, this Friday I will be exactly halfway through my first rotation. And I’m feeling great about it!

Abby Bales, Student Physical Therapist and wheelchair driver extraordinaire.

Abby Bales, Student Physical Therapist and wheelchair driver extraordinaire.

What a difference a year makes. I cannot thank my friends, family, classmates, running community, lululemon family, and all of you enough for all of your support and encouragement over this past year.

I guess today’s post embodies all of what Better Than the Alternative Tuesdays are really all about: forward motion in the hopes of a better tomorrow.

I was scared to go forward with surgery but I did it and I don’t regret it one little bit.

I was scared to go forward with school, not knowing if my body would hold up, but I did and I made it through (with a little LOT of help from Birdie).

I was scared to come forward about my disease and surgery and all that but I did and managed to not only make new friends, but reach out into the IBD community to help other people struggling with the same decisions I had to make.

And no matter what happens, it is always better to be here than not to be here. I know that now more than ever.

Happy colon-free-iversary to me! I am totally colon-free and kicking ass!

Now go out and run!

My {2nd} First Run Post-Op

Central Park, I have missed you.

 

I have missed you, old friend.

There really is nothing like New York in the Fall. If you have any doubts, watch You’ve Got Mail. It’s basically a love letter to NYC throughout the seasons, which I just love.

Where was I? Oh, yeah. I went running!

I’m sure that was what was on your mind when you woke up this morning. Not that silly little storm bearing down on the Eastern seaboard as I type.

Hurricane? What hurricane? All I see are whitecaps on my normally calm East River and sideways rain and trees about to get pulled out of the grou…OOOOOH! You mean THAT hurricane.

In my world, two successful post-op runs in a row is far more newsworthy than Sandy the Monster. Ok, that’s probably not true for anyone else but me but I’m gonna write about it anyway.

I ran my very first run back on my beloved Bridal Path in Central Park. I was greeted with cool temperatures, a quiet path, and the most beautiful scenery NYC has to offer.

Sheep Meadow looking very fine this Fall day!

Hello, gorgeous. Not the Bridal Path but I was too happy to stop and take a picture. You understand.

Sadly, Sandy is currently blowing away all of my beautiful leaves and trees.

Bitch.

I’m really glad I got two full runs in before this nonsense took over because several happy things happened on my run:

  1. I didn’t have to stop once, not for anything.
  2. I ran 1.75 on Saturday and 2.5 on Sunday.
  3. I feel great.
  4. My body doesn’t feel beat to hell like it did last time.
  5. No one ran into me.

Win!

I also saw one of my best friends on the side of a bus while running. Rockettes are preeeetty.

I spent the past two years figuring out how to run with this disease. When I was able to run, it was always interrupted by having to make a mad dash for the bathroom. Multiple times. Every run. No exceptions. It was not a way to live and it beat my spirit.

In a bathroom during an 11 mile workout, where else?

No more.

It started with a bag and Rosebud.

Me & Rosebud were a good team, though she often thought naked running was the way to go.

And now, it’s me and my pouch. 1.75 miles and no panic. 2.5 miles and no fear. For the first time since all this started a month ago, I am hopeful that I will be able to get my life back.

One run at a time. One mile at a time. One step at a time.

I’m off and running! How about you? Who knows–you might just spot me at a half-marathon sometime this Spring. You never know! In the mean time, you can find me at the medical tent of the New York City Marathon with my fellow NYU DPT students. I don’t want to see any of you there, ok?

Catch me at the Finish Line Medical Tent for a massage :)

Now go out and run!

(Unless you are on the East Coast, in which case ARE YOU CRAZY?!?! GET INSIDE!!!!)

Saying Goodbye

Tomorrow I go in for my take-down surgery. It was not supposed to be tomorrow but other complications are mandating I go under the knife sooner rather than later and do everything all at once.

2 ER visits = surgery tomorrow.

Well, ok.

The general consensus from people in my world is that this is a good thing. No more bag! So great, right?! I get to be “normal” again!

You wanna know a secret? Promise you won’t tell?

I love my bag. I love Rosebud.

To me, Rosebud has been a symbol of freedom and health in my life. Rosebud has given me confidence in my body that was dwindling in the past two years. Rosebud has allowed me to get on with my life.

Love, love, love my bag.

My J-pouch is a variable. My J-pouch might not work. It will for sure be a HUGE adjustment for the next few months, maybe a year, for my body and for me. I won’t have the freedom I have now with my bag. I won’t know what to expect day to day, run to run, class to class.

Saying goodbye to Rosebud is scary. It’s emotional. I don’t wanna.

Back to the bathroom. Back to starting over again with running after training for a marathon all summer. Back to figuring out what I can and cannot eat. Back to panicking.

But I know I have to try and I know I can go back if it doesn’t work for me. And I know that no matter what happens, JB is there, loving me with or without my bag.

So, here I go. “Starting Over”-type blogs to come. Sorry for being light on the running part of the blog. I hope to be back in business asap.

Wishing everyone great races this weekend, especially my friends at the Portland, Chicago, and Twin Cities Marathons, or last long runs for my New York and Marine Corps marathoners.

Thank you all for your supportive, moving comments. I’m looking forward to coming back and running stronger every day!

Now go out and run.

Invisible Illness Awareness Week

This week is Invisible Illness Awareness Week, September 10-16, 2012. I have an invisible illness, as do millions of Americans. Rosebud would sometimes like to be more visible, I think (she occasionally gets naked when I run), but by and large, you can’t tell she’s there. It’s a struggle for many of us who need special accommodations and maybe just a little smile from day to day.

Hey, hey Rosebud!

“Be Kind for Everyone You Meet is Fighting a Great Battle.”–Plato

1. The illness I live with is: Ulcerative Colitis/Ileostomy

2. I was diagnosed with it in the year: 2010

3. But I had symptoms since: 2001

4. The biggest adjustment I’ve had to make is: With UC, it was spending almost 5 hours in the bathroom every day, not being able to take the subway, not being able to run outside, not being able to eat foods I like or that are healthy. With my ileostomy, everything has gone back to normal…except for how food exits my body :) Oh, and I have to hydrate more and eat more salt (twist my arm).

5. Most people assume: That digestive diseases are the fault of the person and can be cured with some special diet. Digestive diseases are either hereditary or the result of a transcription error in your DNA reproduction (RNA). Simple as that.

6. The hardest part about mornings are: With UC, it was that I had no idea what my stomach would do that day. Was 1 hour in the bathroom enough? 2? How much blood would I lose? It was terrible. Now, sometimes Rosebud needs to be re-dressed and it’s 4:45am and I have a 5:15am client. Not a lot of time but it’s pretty rare when that happens! All in all, a complete 180.

7. My favorite medical TV show is: Do old Grey’s Anatomy re-runs count? I don’t watch any of the “doctor” shows unless Dr. G, Medical Examiner counts…and I no longer have cable so I don’t even watch that anymore.

8. A gadget I couldn’t live without is: My Hollihesives by Hollister. Holla! With UC it was my smartphone. The bathroom is a lonely place for 5 hours a day.

9. The hardest part about nights are: Blowouts from gas. Yeah, ostomies are so sexy :) With UC it was the unpredictability of the emergency bathroom visits. Oh, and all the times I didn’t make it.

10. Each day I take: Vitamin D & B12. There used to be 3-4 other incredibly hard drugs on this list, but Rosebud made those all go away. They didn’t work anyway.

11. Regarding alternative treatments I: Tried. Acupuncture, juice diets, meditation, yoga. They failed.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. No one stares at me or asks me point-blank about Rosebud who doesn’t already know me and know my story.

13. Regarding working and career: I am lucky that I had another choice beyond the drugs. UC was affecting every aspect of my career, including my ability to attend class to get my degree. Without the surgery, I’m not sure I would have been able to do my job long-term.

14. People would be surprised to know: That I am the happiest I have been in a long time with my colostomy bag and I would choose it every single day of the week and twice on Sundays rather than going back to doing my business “normally” and still have UC. You can keep my colon, I’ll take my health.

15. The hardest thing to accept about my new reality has been: Adjusting my wardrobe for my bag. Not fun.

16. Something I never thought I could do with my illness that I did was: Run two marathons during massive flare-ups and I’m planning on my 1st colon-free marathon in 6 weeks (5 months post-op). The human body is amazing.

17. The commercials about my illness: Never seen one. No one likes to talk about poop.

18. Something I really miss doing since I was diagnosed is: When I had UC, it was running outside. Now, it’s wearing a bikini on the beach.

19. It was really hard to have to give up: UC: salads. Ostomy: bikinis.

20. A new hobby I have taken up since my diagnosis is: UC: surfing the Internet in the bathroom. Ostomy: life is back to normal, nothing new to report.

21. If I could have one day of feeling normal again I would: Get in a bikini and run on the beach without a shirt.

22. My illness has taught me: That I am strong and life goes on. That my husband loves all of me always. That my family and friends (the real ones, anyway) rock.

23. Want to know a secret? One thing people say that gets under my skin is: Right after my surgery, someone remarked that the post-op 20lb. weight loss “looks great on you”. Oh gee, thanks. Never tell someone who is sick and has lost a bunch of weight due to their illness that they look “so great”. They feel like sh*t.

24. But I love it when people: Ask about Rosebud. It means they care enough to want to know about my disease.

25. My favorite motto, scripture, quote that gets me through tough times is: If you just keep going, eventually you will get to the finish line.

26. When someone is diagnosed I’d like to tell them: You can do anything you want with this disease, you just have to get creative and be brave.

27. Something that has surprised me about living with an illness is: How my husband has responded. His unwavering love and support has pulled me back off of many a ledge and kept things in perspective. I didn’t realize how much I needed that from him. His strength is the reason I have been able to go through all of this with a smile.

28. The nicest thing someone did for me when I wasn’t feeling well was: Leave the hospital room/my apartment and let me sleep. No, really. And I received more flower arrangements in the hospital and at home than I ever thought I would in a million years. I was so moved by the outpouring of support.

29. I’m involved with Invisible Illness Week because: My disease isn’t sexy, but that doesn’t mean you should know about and talk about it. I want the IBD community to be strong and supportive of each other.

30. The fact that you read this list makes me feel: Humbled. And a little weird. You read about poop?

Now go out and run!