29 Things About GP

29 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Gastroparesis and moderate probable Colonic Inertia
2. I was diagnosed in  November 2011 just having turned 26.
3. But I had symptoms since:July 2011 thank God for good doctors
4. The biggest adjustment I’ve had to make is :Finding ways to be social without food. Food is everywhere!.
5. Most people assume that I miss food. Not so. I have not been truly hungry in 18 months..
6. The hardest part about mornings are: The nausea. It overwhelms me and it takes a lot of energy to push past it and get out of bed.
7. My favorite medical TV show is: It was ER. Then House. If anybody knows of a real life House please let me know! I liked Grey's Anatomy a lot more in the early years than I do now, still watch that too though
8. A gadget I couldn’t live without is: My Ipod. Music is my happy place. Always has been, but has become critical to maintaining my sanity since getting sick. After that, my laptop or tablet are great for staying in touch with family and friends who are spread out all over the place.
9. The hardest part about nights is Right now, it's being hooked up to my TPN. I'm on it 12 hours a day now. Either 5P-5A on weekdays, or 7P-7A on weekends. I have to get up at least twice to pee. It's about to get more annoying since I'm chronically  clinically dehydrated and am finally going to let them add more sterile water to my bags. The dietitian will be happy since she's been suggesting it the last couple of weeks.
10. Each day I take Nine pills, two inhalers and a nasal spray. With the arrival of my PICC I now get IV zofran twice a day. I'm on a long course of steriods right now too so they're in the mix.
11. Regarding alternative treatments  Fine by me.
12. If I had to choose between an invisible illness or visible I would choose:Since I already used a chair before GP joined the party, I don't get a choice. I have found myself wishing that I didn't have CP a lot lately. Generally it is easier to live with CP, if only because the chair does a lot of the explaining for me. I am still really bad at making why I don't/can't eat make sense to people.
13. Regarding working and career:  My work is extremely important to me. It's become a great distraction as my health has gotten shakier. My coworkers are a great support. I will do everything in my power to continue working.
14. People would be surprised to know:  That I have seriously considered medical school several times. If I was working with a full compliment of body parts, I totally would've gone. I think my life has taught me so much that would benefit other people. I really like the puzzle-solving aspect of medicine too.
15. The hardest thing to accept about my new reality has been: The unpredictability. I just get used to a progression, the idea of needing the next more invasive surgery or intervention and it all changes again. I think of TPN as the last resort so some of the living on shifting sand feeling has gotten better. The next thing is death, and I'll be damned if I'll let that happen!
16. Something I never thought I could do with my illness that I did was:  I have made some great new friends through the online support group. Even though we will likely never meet in real life, that group has become like family to me. I hate having GP, but without it, I would never have met some truly incredible people.
17. The commercials about my illness: Don't exist  Even though GP is *not* a rare disease, there is very little awareness about it. The lack of awareness is particularly evident and problematic in the medical community. Case in point, the last time I saw my primary doctor, she asked why we were considering nutrition support. In her eyes I looked great!
18. Something I really miss doing since I was diagnosed is: Taking advantage of the great things my city has to offer. Before GP, I was always going somewhere or doing something on weekends. Now even managing to shower every day is a stretch
19. It was really hard to have to give up My conception of health. I always considered myself a healthy person. I had a disability, yes, but that didn't make me sick. Now I am very sick and have a disability.
20. A new hobby I have taken up since my diagnosis is: Blogging. It is very therapeutic for me to come here and express myself in a much more articulate way than I could manage when I speak.
21. If I could have one day of feeling normal again I would: Eat at my favorite restaurant  in the city. Then I'd go spend the day with friends at the museums or at the movies. Then I'd eat at another restaurant  Then come home and eat some more!
22. My illness has taught me: Never to take anything for granted. Eighteen months ago, I had no idea how radically life would change for me. I should've appreciated my life before a whole lot more than I did.
23. Want to know a secret? One thing people say that gets under my skin is: "But you look good!" Thanks, I know I needed to lose weight before but those three words are a surefire way to make me feel like you aren't paying attention to *how* I've lost the weight.
24. But I love it when people: Ask thoughtful questions or listen without judgment. Sometimes I just need a listener.
25. My favorite motto, scripture, quote that gets me through tough times is:I do hard things. This is something my mom often told me when I struggled to find a job. Every day I say it to myself. Yes, this is hard, maybe the hardest thing I've ever done. I can do it though because I do hard things.
26. When someone is diagnosed I’d like to tell them: Educate yourself. Find the best doctors you can. Speak up. Take a deep breath. The worst may happen for you but it will be OK.
27. Something that has surprised me about living with an illness is: the loss of control. I now feel like my body isn't mine. I'm just a visitor.
28. The nicest thing someone did for me when I wasn’t feeling well was: Call and tell me a story. Ask me for advice. When I'm miserable, I feel like it's the best gift ever to be reminded that I'm valued and important.
29. The fact that you read this list makes me feel: loved and understood.