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!

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Time Trials

Guys, the Sparkly Soul giveaway ends TONIGHT AT MIDNIGHT EST. Get your nominations in and check back tomorrow to find out who the lucky winner is! So excited!

So, I run for distance. My schedule usually says something like “run 5 miles” or “10 miles: 1 warm up, 4 marathon pace, 4 half-marathon pace, 1 all out” or the like. I don’t like to run for time…so, naturally I made that a workout this week. I just figure if I don’t like doing it, I should probably do it anyway.

The other thing is that as I get faster, I really need to be adding on the mileage. 5 miles ain’t what it used to be to me when I’m running it at 7:20-7:35 minute miles and I need more than a 38 minute workout. Plus, the only way you become a better runner is to run more and faster. So, here we go.

Yesterday I did a 60 minute time trial on the treadmill. Why the treadmill? Proximity to the bathroom. Would have loved to have done this outside on the West Side Highway or something but that’s just not in the cards quite yet.

Oh treadmill, people might talk s*#t about you but you are MY friend

Why 60 minutes? Because most of my runs have been 50 minutes or less lately and I wanted to hit that 60 minute mark. Here’s how it worked:

  • 1 mile warm up (8:30 pace)
  • 22 minutes at 7:48 pace (half-marathon pace-ish), worked my way down to 7:30 as I found my groove
  • With 30 minutes left, I dropped the hammer and ran 7:23, working my way down to 7:03
  • Last 5 minutes at 6:53
  • Walking cool down
  • Massive stretch

It generally takes me 3 or 4 miles to feel comfortable in my pace when I’m running any distance over 5 miles. Less than that and I’m just trying not to puke running a hard 5K and it’s a whole other ball game. So that’s why I didn’t lay the hammer down til about halfway through. And yes, 7:23 is “laying the hammer down” for me. Don’t judge. I knew if I did it too soon that I’d burn out. I did negative splits and really felt that I gave it my all for that day.

I did this for a mental as well as a physical challenge. I ran 7.8 miles in 60 minutes. Next time I may not count the warm up and see if I can’t get the full 8 miles in 60 minutes, a goal I’ve had for a while. The mental side of it was that I had to keep going, no matter how many miles I covered. So, because I had that 8 mile goal and was on a time crunch, I pushed and pushed to get to it.

This is a great way to get a hard run in on the treadmill or on an out-and-back run outside.See how many miles you cover in a given period of time and check yourself every month to see how you’ve improved. Doesn’t have to be 60 minutes, it could be 20. Pick a time and run for it!

Hopefully next month's time trial will be here! See you out there?

Now go out and run.

The Letter “B”

Today’s blog post is brought to you by the letter “B”.

“B” for Benadryl: which is always administered to me before my Remicade treatments and makes me sleep away the better part of my day post-IV drip.

Ugh.

“B” for Bathroom: which is where I spent a good portion of what was supposed to be a short 6 mile run that turned into a it’s-going-to-take-me-over-an-hour-because-I-have-to-stop-in-every-bathroom-in-Central-Park 6 mile run.

Double ugh.

Aaaaaaaand now it’s my bedtime.

Good news is that tomorrow’s post is the very first Run Stronger Every Day Giveaway! Check back tomorrow and see what’s up for grabs.

Night, night.

Go out and run (tomorrow, when it’s not so late)!

Better Than the Alternative Tuesdays: Oldies…

…but Goodies.

Tell you what, there is no better way to celebrate a momentous occasion than with family and friends. My friends are the best. Old and new, they rock the whole wide world.

But what makes this Tuesday Better Than the Alternative are the Oldies.

I’ve had three friends since I was about 5 years old. Two of them are twins (hi Twins!) and one of them is my friend from up the street, Teeny. Teeny is half my size and packs a whole lotta fabulousness in her just under 5′ frame.

I’ve seen the Twins any number of times since my family moved away when I was 15. Luckily, their jobs have taken them to NYC several times since I’ve lived here and I adore visiting with them, if even for just brunch before they head for the airport. They’re fabulous.

Teeny and I see each other far less often. I think we were nearly 7 years, two children, and one husband between visits when we finally touched base last winter. This weekend, Teeny and her husband happened to be visiting and were able to not only meet some of our closest friends, but celebrated the very exciting occasion of me being accepted to NYU’s doctorate of Physical Therapy program.

Yes, I’m still talking about that.

Drinks, dinner, more drinks, two gorgeous runs in Central Park (Teeny’s longest run EVER: 8km!) and lovely visits with our husbands got me to thinking how great it is to have Oldies.

  • Oldies ask about my gigantic family and they actually know all of them by name…and sometimes by nicknames.
  • Oldies remember when I was a scared, awkward kid with low self-esteem (braces AND glasses) and praise me for how far I’ve come, and I believe them.
  • Oldies don’t mind the dirty (not that kind of dirty) talk that is usually reserved only for JB about how “I’m feeling” lately with my UC.
  • Oldies love JB before they even meet him. And know him by face. And cannot get enough of learning about him.
  • Oldies cry with me.
  • Oldies want to know everything about everything and will stop the world if I need them.
  • Oldies are never ashamed of me just being me.
  • Oldies are as proud of my accomplishments as JB, my parents and my siblings are because they know that they helped me get to where I am today.

You know who the Oldies in your life are. They’re the ones who “knew you when” and still know you now. Do you have Oldies? I bet you have at least one. I am lucky enough to have 3. Love you, girls. Thanks for believing in me.

Those Oldies are exactly why today and every day is Better Than the Alternative.

Who are your Oldies? Do you see them often? Do you drink as much as I do when you see them…what is WITH that? Tell me all about your Oldies.

Now go out and run!

“How Do You Stay So Motivated?”

…JB asked. Last night, this very unexpected question came my way from my gorgeous husband and I struggled to give him a concrete answer.

If I’m being honest, what comes to mind first and foremost is vanity.

Gabrielle Reece, courtesy of SI.com

Gabrielle Reece has always been an inspiration to me. She’s strong, she’s healthy, she’s visibly athletic and she’s had two babies…and still has THAT BODY. She is a testament to clean living and exercise and I want to be like her some day…you know, 6’3″ and blonde 😉 Let’s be honest, I am not genetically metabolically blessed and I’m ok with it. I’ve had to exercise my entire life to stay in decent shape so working out is nothing new to me as I venture deeper into my thirties. I guess I should probably be grateful for that.

The other component of my devotion to fitness has nothing to do with motivation at all. Fitness is part of my LIFE, pure and simple. In my world, there is no option to skip workouts just like there is no option to skip brushing my teeth in the morning. I started the habit of exercising for life very young and now it’s just as much a part of my life as breathing.

 

I have always liked cake = must work out. Coincidentally, this is also the year I started running.

Public shame is another tool I use to stay motivated. I set goals, tell everyone I know about them, and then am forced to give updates on my progress when people inevitably ask, “How’s such-and-such going?” That’s what got me to the start line of my 1st marathon in NYC.

I'm not ashamed of this less-than-flattering, heavier Abby picture. That is me ROCKING NYC for the 1st time!

Sharing my fitness and life goals with others has motivated me to stick it out on many an occasion. Twitter and Facebook have opened up an entirely new community for me to seek motivation and encouragement from, which is an awesome benefit of social media.

But beyond those reasons, I find that fitness has taken over a new space in my heart these days. With my flare-ups threatening (and sometimes succeeding) to derail every single workout I try to do, I have started to realize just how important exercise is to me as a person. I guess you really don’t know how much something means to you until it’s taken away.

Working out makes me feel better about how I look and who I am. Running makes me feel a sense of accomplishment. I feel powerful and strong (duh, I know) when I lift. I feel a sense of camaraderie with my fellow classmates when I spin. I feel peaceful and like a dancer when I finish yoga. I am exhausted in the very best way after I swim.

I am my best me when I am happy in my fitness life. I guess that’s the final thought.

I want to be my best me for my husband, my family, and myself. So I make time to run, spin, flow, swim and move in a way that makes me feel good. And that is the best motivation of all: to feel good.

Me. Feeling good, post-sweat.

What motivates you? What gets you to the gym/on the road/in the class? Share with us.

Now go out and run!