Take Steps June 2013

Guess what?!

I started a little team called "Potty Mouths" to raise funds for CCFA's Take Steps walk to find a cure for Crohn's and ulcerative colitis. We will be taking a casual two mile stroll June 9th on Harriet Island at 4 PM. We always welcome new walkers, and are accepting donations here. If you cannot commit to walking, consider asking me about coin boxes (more info below!) or attending the event to cheer our team on.

The Crohn's and Colitis Foundation of America (CCFA) is an organization that promotes and funds research of inflammatory bowel diseases, raises awareness, and provides education for patients and their loved ones. They also offer workshops to educate IBDers and support groups throughout the nation. They have received a grade of A- on charitywatch.org, and "eighty-two cents of every dollar raised in 2011, went toward research, education, and support".

I am turning twenty-one next month, and in lieu of gifts (besides the occasional drink, of course) I am requesting donations made to my page. I can always buy myself fancy trinkets, but I can't buy myself health.  (Sometimes, I wish I was Wolverine so that my colon could instantaneously heal.)

Prednisone and I don't mix.

If you are walking and lead a hectic life or can't commit to walk, but would like to help raise money, I have coin boxes for the event. You can leave the coin box in your office, place of worship, school office, businesses you frequent, etc and people can drop in their change. Just contact me and let me know. For those of you who have committed to the walk, I am still looking for venues to fund raise. Please share your donation page on Facebook, and spread the word!


Thank you!

I Want to Live Big

I had a wonderful but almost unthinkable daydream the other day. I wondered what it would be like to have healthy guts, what it would be like to be cured of all my bowel problems: IBD, IBS, and lactose intolerance.
Let's assume that the cures are realtively safe and simple. They don't require lengthy, overnight hospital stays, and there are no side effects. In my daydream, none of the cures for any of my gut conditions are too terribly difficult or horrible to endure. A cure for IBD is the most important cure of course, but not being lactose intolenrant or having IBS would be awesome.

If I were to be cured, the first thing I'd do is have a sob fest. My tears would not only be of joy for  being well for the first time in my life, but also tears of loss. I'd be upset that a cure wasn't found sooner, or that so many children have inflammatory bowel disease. Maybe I'd mourn for a friend who died of IBD complications, or a friend who needs a cure more than I do, and wasn't able to get the insurance or funds. I'd be upset for the people I couldn't give the gift of health.

I wonder what it would be like to live without pain or urgency. It'd be nice to go out for dinner with Holden and not scrounge the menu for a dish I can enjoy without getting ill and spending the rest of our date in the restroom I spotted when I walked in. I'd love to spend an entire day completely pain free. I don't remember the last time I spent a full twenty-fours hours without pain in my body from either my arthritis or my inflamed guts.

If I were cured, I'd never have to be aware of every single public restroom I see. I'd probably still do it out of habit, but I wouldn't have to. I also wouldn't have to ride the bus and suddenly realize that the day is going to be a long one, and I should have packed fresh underwear. I wouldn't spend so much time on the toilet at work that I wonder if my boss will fire me. I'd never have another awkward IBD moment again... That's a bizzarre thought.

The emotional wounds of this disease run deep, but would they ever close? Could I ever forgive myself for being a burden, both financially and emotionally to the people I love? With a cure, could I love my body?  Would being cured make it easier for me to accept myself?

If I were cured tomorrow, would I ever get to be young again? Would I take the oppurtunity to do as many stupid things as I can, because I grew up too fast and want to experience being in my twenties or teens just once? I think I would, but then, this disease has made me more wary and untrusting than I ever was before. Ulcerative colitis has forced me to grow up and be an adult faster than I ever wanted to, and I don't think my self-protecting habits will ever leave me. The anxiety I face as a result of IBD will stay with me forever. I'll always come into work ill because I'm afraid of losing my PTO for emergencies. I'll always penny-pinch to save in case of sick leave. My strange eating habits will stay with me forever, because I've had them as long as I was old enough to recognize what foods made me feel bad. I'll never really party because, personal beliefs aside, I'm so used to my body feeling achy and old and tired, that staying up all night to intoxicate myself is a waste of time and precious energy.

I hope I'd embrace health. I want to do things. I've wanted to travel Europe with nothing but a backpack, some cash, and a map since I was fifteen.  I can't do that now, not with the medications I am on. My dad travels the world for business trips, and when he's not working, he explores the countries he is in. Whenever I see the videos he's recorded on his trips, I struggle not to feel jealous. I'd love to go trekking through the jungles of Coasta Rica, or stroll the streets of Paris at night. I want to explore ancient churches and castles in Germany and Austria. I want to eat sushi in Tokyo, without worrying that I'll get sick. I want to experience the world, and right now, I'm trapped in my body. I love traveling. It revives me, but my disease is holding me hostage in the Midwest.

What would I want to be when I grow up? Would my dreams change? I want to go into gastroenterology to help others and because the topic fascinates me, but if I were cured and my body did not limit me, would I want a different life? When I was a child, I wanted to be tap dancer, an olympic figure skater, a policeman, a pilot, a linguist, a writer, a professor, a pychologist and a palentologist. My career dreams changed every few years, and by the time I graduated I tried to join the Marines. (I wasn't accepted because of my hearing loss. Bummer.) If my guts and hearing were decent enough to join the military, would I? Maybe if I were young enough. But that's a big maybe. Once I have my health back, I don't think I want to give it to anyone but my family. I'd rather use my health to make own path, not the military's.

The only thing I am sure of is this: I'd tackle hug my children everyday, love my husband with all my heart, make sacrifices for my family, try and love everyone I meet, and travel as often as I could afford. The rest is meaningless to me. I just want to enjoy every moment of life and live big.

What to Say to an IBDer!

Over the weekend, I posted a link on Facebook of what not to say to someone with IBD. While I think this is great, I haven't seen any posts in other blogs of what you should say to someone with IBD, so I decided to write one. These are things people have said to me that have really helped brighten my day when I'm not feeling well.


1. "You're such a trooper." -or- "You are a strong/brave person."
These are great words to hear, because whoever is saying them is acknowledging that you are in a ton of pain, but also saying that you're tough. When someone says these words or something similar to me when I'm flaring, I glow. I realize this might sound strange to someone who's never been sick, but they are honestly some of the best words anyone has told me.


2. "You look so cute today!"

Shown: Beauty.

Ok, so don't tell me this one when I'm in pajamas and I haven't showered in several days because my joints hurt too much to get out of bed. But when you can see I made a genuine effort to look good, point it out. Sometimes, just taking a shower in the morning is so exhausting that I want to crawl back into bed, and picking out the perfect outfit and finally perfecting my cat eyes is unthinkable, but I do it anyway. When you know I have IBD and say I look cute, you are acknowledging that you know I'm in pain and went to great lengths to be this adorable. Plus, who doesn't want to hear that they look good every now and then?


3. "I'm sorry."
This one used to really bother me. Why are people sorry for something they did not do to me? Unless you gave me IBD, which is impossible, why are you apologizing? (I know, I'mm strange.) It wasn't until I started meeting other people with IBD that I finally "got it". I see my friends in so much pain, struggling to feel better, and I feel so horrible for them. I want to take away their immune system and give them one that hasn't mistaken their guts for a foreign invader. I feel sorry for them, even though I didn't give them IBD (which, again, is impossible).  Now that I understand, I don't mind when people say they are sorry. Just be careful- sometimes it can be tiring to constantly hear "I'm sorry" from others, because sympathy gets old fast.


4. Physical touch.
I used to hate touch. Loathe it. I hated touchy-feely people, and I still do. I just met you, so why should I trust you? My inflammatory bowel disease has taught me that touch is important. When I'm feel incredibly lonely in my disease, touch connects me to loved ones. As long as people ask for a hug or offer to hold my hand, I'm OK with touch. It makes me feel a little closer to humankind when I feel like a freak of nature with a million different IVs in my body or a PICC line sticking out of my arm. I don't love touch by any means now, but I don't mind as much. A well timed offer for a hug can be a million times better than any words. A word of caution, however. IBDers are generally in pain, unless they are in total remission.  Be sure not to hug too firmly, press against the stomach or hold on too long. Be mindful of the persons reaction, and loosen up if they seem to tense, whether holding their hand or hugging- you might be hurting them. Also, please try to be careful of the IV tubes, and especially PICC lines. Sometimes people get a little carried away and rip the skin around the tube. It hurts.


5. "I'm thinking about you/ praying for you."
If you've ever been through a hard time (which we all have), you'll know just how important it is to hear these words.  It's good to know you are in people's thoughts when you are sick.


6. "Can you tell me more about your IBD?"
I still feel a little shy talking about my IBD in front of others, because I never know how they are going to react to my story. Will they be disgusted? Will they roll their eyes and think I'm just whining about IBS? When someone says they are interested in learning more about my IBD, I practically fall over myself and don't know where to begin. I love pretty much all IBD-related questions, but some things I still prefer to keep more private. Go ahead and ask, but I do have boundaries, believe it or not.


7. "Where's the bathroom?"
I am adding this one only because it amuses me. When I'm out with people I know and they need to use the restroom, they turn to me and ask where the facilities are. I always know, even if I haven't been to the venue before. I have spidey sense when it comes to toilets.


8. "Are there any foods you need to avoid? What can I make that you can eat?"
I really appreciate when people ask this. It shows they are concerned about my health, and are taking the time to actually make something I can eat without getting sick(er). I usually tell people not to worry about it, and that I'll bring something or eat before hand, but this is so considerate and polite that I can never properly express my gratitude.


9. "What's the difference between IBD and IBS?"
This is an awesome question! I love, love love when people ask me questions like this, because they are taking the time to educate themselves  To anyone who's ever asked ths very important question: thank you from the bottom of my heart. You are raising your own awareness of a disease that affects one in two hundred Americans, and hopefully, if there are others around, raising their awareness, too.


10. "I love you."
Bam. That, right there. When I first began bleeding I was so deeply ashamed I didn't even tell my best friend/ boyfriend, and I tell him everything. When people tell me they love me, I am reminded that I am worthy of love, no matter how disgusting I feel or how many times I shit myself even though I'm a young adult. People who truly love me will still show it, so if you say this but don't show me love, then don't say it at all. When people who say this also show it, those three words become incredibly powerful, and stick with you. If you love me, tell me, and then show me how much you love me by continuing to be my friend, even when I sprinkle my speech with crappy puns.


11. "I'm going after that person's ass."
As IBDers, we sometimes face incredible rudeness from people who just don't have any love in their hearts and sadistically spread their filthy attitude and hate anywhere they can, because they are terrible human beings. (I feel awful for these people; it must be horrible to live like that.) When I'm too sick to defend myself and my friend or family member tells the gas station attendant where they can stick the keys to the bathroom that they won't give me, I feel proud. And also hurried, because I really need those keys.

The best thing you can do is just continue to be my friend, love and support me. Ask questions if you're curious- the worst I'll say is "I don't feel comfortable sharing that" or "I'm not sure, I'll have to ask my doctor". Oh, and also share my love for potty humor and weird stuff.

A friend comes with you to your colonoscopy to drive you home. Your best friend takes ridiculous picture of you when you're unconscious from medications and puts them on Facebook. Thanks.