It’s 5 am and I am laying in bed holding my pee and trying hard to keep my eyes closed. No one in their right mind is awake yet. The house is a bit chilly. I wiggle and remember that cup I left on the bedside table. Should I just get up pee in the cup , lay down , roll over and go back to bed avoiding the cold crisp walk to the bathroom? I seriously lay there and debate this for a good few minutes, before I just can’t hold it anymore. I get up and run to the bathroom. What was I thinking laying there that long debating such a silly option. Now, my bladder pain is even more intense.

1 week ago · 1 note

Things About My Invisible Illness You May Not Know:

1. The illness I live with is: Interstitial Cystitis (I have more but am too lazy to list them all right now)
2. I was diagnosed with it in the year: 2010 
3. But I had symptoms since: I was really young. Started going to doctors at age 5 with bladder issues.
4. The biggest adjustment I’ve had to make is: My diet and everyday life. I am always in pain , so it is difficult to do some of the simplest things sometimes.
5. Most people assume: I’m not as sick as I say I am. That I use it as an excuse.
6. The hardest part about mornings are: Knowing what all I have to get done and being in so much pain I don’t want to move.  
7. My favorite medical TV show is: The Drs
8. A gadget I couldn’t live without is: My Heating pad. Best thing ever!
9. The hardest part about nights is: Knowing that I won’t be able to sleep without getting up at least 5-6 times.
10. Each day I take __ pills & vitamins: 4
11. Regarding alternative treatments I: have tried acupuncture & meditation
12. If I had to choose between an invisible illness or visible I would choose:  I really don’t know how to answer this question because having a invisible illness is difficult because people tend to pass more judgement based on lack of the visual and not take it as seriously. On the other hand, having a visible illness would be just as difficult I am sure there would still be people being harsh and judgmental for the same reasons and possibly other reasons as well. Honestly, I would rather be healthy and not have any illness.
13. Regarding working and career: I was taken out of work by my doctor 2 years ago. It is too difficult for me to work. I am constantly in pain and it takes me 5x longer to do anything cause I always have to stop to pee. I am enrolled in online classes though. It scared me that my career was put on hold, so I am doing what I can and praying that by the time I am done with school they will have a cure or the medications will help enough that I am able to fulfill my career dreams.
14. People would be surprised to know: The statistics behind IC. There are a lot of people that have Interstitial Cystitis…. 4 million+
15. The hardest thing to accept about my new reality has been: Acknowledging the fact that this might not ever go away and realizing that my bladder is getting worse.
16. Something I never thought I could do with my illness that I did was: Talk openly about my experience and journey with IC.
17. The commercials about my illness: I wish we had some.
18. Something I really miss doing since I was diagnosed is: Being spontaneous. Hiking, amusement parks, concerts
19. It was really hard to have to give up: All my favorite foods and some of my friends.
20. A new hobby I have taken up since my diagnosis is: IC advocacy, making jewelry
21. If I could have one day of feeling normal again I would: Go dancing and rock out at a concert, take a long road trip, go jet skiing
22. My illness has taught me: That you can’t let things consume you or control you. It has taught me to stay strong. It is easy to give in or want to give in to your illness and get depressed. I got stuck there for a long time and finally realized this is my reality I gotta face it and do what I can.
23. Want to know a secret? One thing people say that gets under my skin is: ” If you just drink a ton of water or cranberry juice you won’t have problems anymore”  Water does help some and cranberry juice is a huge “no, no”. IC is a chronic condition. I will have this until there is a cure.
24. But I love it when people: Go out of their way to make me smile or cheer me up. It also makes me feel more cared about when people try to learn about my illness and help me in a positive way.
25. My favorite motto, scripture, quote that gets me through tough times is: God gave the toughest lessons to his best students
26. When someone is diagnosed I’d like to tell them: The good thing is you now have some answers to what is causing all your symptoms. Try not to get discouraged and know that it does get easier.

27. Something that has surprised me about living with an illness is: How overlooked this stuff is
28. The nicest thing someone did for me when I wasn’t feeling well was: Made my favorite IC friendly meal, got me movies, heating pad and built a fort bed in the living room.
29. I’m involved with Invisible Illness Week because: I feel that awareness is our #1 hope.
30. The fact that you read this list makes me feel: Smiley  :)  and cared about.

8 months ago · 3 notes · Source

What do you plan on doing this month to help raise awareness?

  So far I have made signs, wrote my local news station, wrote my senator,  and painted my nails teal/blue. Much more to come.

8 months ago · 0 notes · Source