My 30 Things: Invisible Illness Week 2015

30 Things About My Invisible Illness You May Not Know

Donna Kay and Jules at our first in-person meeting! So much fun!

1. The illness I live with is: Crohn’s Disease, Ulcerative Colitis, Chronic Functional Abdominal Pain and AutoImmune Arthritis
2. I was diagnosed with it in the year: 1997
3. But I had symptoms since: 1995, but I have had some minor symptoms for most of my life.
4. The biggest adjustment I’ve had to make is: Changing my plans for my life.
5. Most people assume: That Crohn’s is like eating bad food.
6. The hardest part about mornings are: Managing my medicines so that I don’t get an attack, also the stiffness and swelling in my joints is usually worse in the morning.
7. My favorite medical TV show is: Kingdom Hospital
8. A gadget I couldn’t live without is: My Medtronic Remote
9. The hardest part about nights are: Managing my sleep hygiene so that I can stay as healthy as possible.
10. Each day I take __ pills & vitamins. (No comments, please) 26
11. Regarding alternative treatments I: Am open as long as I research it and can find a reputable practitioner to work together with my other team of doctors.
12. If I had to choose between an invisible illness or visible I would choose: Neither, I would choose health.
13. Regarding working and career: I have adjusted to my new surroundings and I have found other ways to stay social and to keep current with my peers and the world.
14. People would be surprised to know: That I love Karaoke.
15. The hardest thing to accept about my new reality has been: Feeling like I had been taken out of functional society.
16. Something I never thought I could do with my illness that I did was: Find happiness in all of my relationships.
17. The commercials about my illness: Can be silly, but has also brought a TON of awareness.
18. Something I really miss doing since I was diagnosed is: Eating fruits and vegetables.
19. It was really hard to have to give up: School and the plans for my career.
20. A new hobby I have taken up since my diagnosis is: Advocation and crochet.
21. If I could have one day of feeling normal again I would: Eat anything I want and lots of extreme sports.
22. My illness has taught me: To find the positive in as many situations as possible and to look deeper at the people I meet. 
23. Want to know a secret? One thing people say that gets under my skin is: Why don’t you just suck it up.
24. But I love it when people: Treat me like a regular person…but special!
25. My favorite motto, scripture, quote that gets me through tough times is: Proverbs 15:1 A gentle answer turns away wrath, but a harsh word stirs up anger. 
26. When someone is diagnosed I’d like to tell them: Take my hand and a deep breath, you are not alone! . 
27. Something that has surprised me about living with an illness is: The amount of time it takes to try to be as healthy as possible.
28. The nicest thing someone did for me when I wasn’t feeling well was: Brought food with recipes and continued checking.
29. I’m involved with Invisible Illness Week because: I want everyone to know that we can do so much and that we are Chronically Awesome!
30. The fact that you read this list makes me feel: Grateful and humbled.

Pot Blocked and Persecuted

What’s the punishment for pulling a “dine and dash” on Donna and Eric or for framing Van Wilder? A mega dose of laxatives and explosive diarrhea, of course, strategically timed to cause the most humiliation, hilarity and hi-jinks. I’ll admit I think it’s funny, because it makes me slightly uncomfortable like all good humor should, oh yeah and it’s fake. An every day real life situation like that would be freaking awful.

I have two types of Inflammatory Bowel Disease (IBD), Crohn’s and Ulcerative Colitis (UC), which can cause all kinds of random and often unexpected digestive meltdowns. Just living with IBD can be highly embarrassing and humiliating.  IBDs are also invisible illnesses, meaning they affect us, and can disable us, but there are not a lot of outward symptoms, so people don’t always believe that we are sick.  I have a disability but I don’t need a wheelchair, a walker or a cane. What I do need is an available restroom.

Sunday afternoon I was Pot Blocked at my friendly neighborhood PetCo store because I didn’t look sick enough. There was no public bathroom so I asked an employee if there was one on premises, she was going to admit me to the private loo but had to finish helping her customer first and asked her superior to help me. The manager promptly stated that the bathroom was for employees, the “handi-capable” [her words} and pregnant women only. When I told her that I had Crohn’s she said she was sorry and walked away. I could have pressed the issue, but honestly I had to go too bad. I was mortified, angry and close to tears. The whole exchange left me feeling dehumanized, I can’t use their actual bathroom but my dog can poop on their floor with no problems. I would rather die than have an accident in the aisle. I could have told her that it is against the law and that she was practicing discrimination but I had to leave. It was 19 excruciating minutes before I could get to a public facility with available, um, facilities.

I am just one of millions of people who have to do battle with their bodies every day and as embarrassing as our bodies and diseases are, we are amazingly resilient. The term “Chronically Awesome” is used a lot on What the Jules’ site; it is a choice that each of us has made to keep our lives balanced and not to give power to our diseases. This week I have been continually amazed to learn just how many Chronically Awesome people would stand up for me. I told Jules what had happened and that I was absolutely livid. She encouraged me to share with you. She and I posted a few tweets each and the community ran with it; sharing my story, sending me legal advice and appealing for advocacy. I am so proud to be affiliated with such a caring and supporting group. Thank you for having my back!

This is how I will continue to take my stand:

Ally’s Law for restroom access makes it illegal to deny us entry in retail establishments. I will help in any way she needs to make sure all 50 states adopt it. We have it inOhiobut obviously we need to improve awareness and empathy in my dearBuckeyeState. Locally I will go through the proper channels to report this event and find out what else I need to do and update you with my progress. I don’t want anyone else to experience what I went through, it was quite painful and frustrating but it could have been a lot worse and no one deserves to be treated like this. We deserve our dignity and self-respect. Stop the Pot Block!

If you have a story like mine and you feel like talking about it please contact me personally or leave a comment below. I would appreciate the chance to talk to you.

*At press time I have emailed PetCo following the channels that they have provided and haven’t heard back.

3/1/12 I have received a tweet from PetCo requesting my contact information. I have sent it but have not received a response.

I will continue to keep you posted.