30 Things

I saw this on one of my favorite blogs, butyoudontlooksick.com. I thought it was pretty cool and perfect for my little space here. So after weeks of trying to get this done and posted, here you go.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Ulcerative Colitis, IBD Arthritis, Fibromyalgia, Migraines, orthostatic hypotension (maybe more who knows)

2. I was diagnosed with it in the year: 2003 (UC)

3. But I had symptoms since: I would say I had stomach “troubles” since my late teens. Migraines started as a teenager as well

4. The biggest adjustment I’ve had to make is: Saying no, I am a yes girl both because I want to do everything and because I don’t want to let anyone down. But my body needs me to say no and be good to it.

5. Most people assume: that because I look good and am happy, that I must not feel so bad

6. The hardest part about mornings is: moving and stretching my body enough to get out of bed and dealing with the nausea.

7. My favorite medical TV show is: House, although I don’t watch it regularly

8. A gadget I couldn’t live without is: My iPhone, I’m addicted. It makes waiting rooms so much more enjoyable

9. The hardest part about nights is: Falling asleep

10. Each day I take: lots of vitamins and just a few pills

11. Regarding alternative treatments I: Whole-heartedly believe that a total body approach helps in healing or managing disease. Try anything and everything that makes you feel even a bit better.

12. If I had to choose between an invisible illness or visible I would choose: I would say invisible, because you can hide it and just be you, not always sick you.

13. Regarding working and career: I have come to peace with the fact that a 40+-hour workweek, especially in my previous career, is not going to work in this body. I’m happy about that now. I’m able to be productive, volunteer and will be a stay-at-home mom and still be ok managing my diseases and taking good care of myself at the same time.

14. People would be surprised to know: That I feel blessed by many of the trials I’ve been shown especially these past four years. I’ve learned so much about myself that may have taken many more years or may have never been revealed, and I think I’m stronger and a better person because of it.

15. The hardest thing to accept about my new reality has been: That I can’t do everything. I’m used to being the dependable rock in all situations. I hate feeling limited in some situations.

16. Something I never thought I could do with my illness that I did was: Be an advocate for myself and others in such an impactful way.

17. The commercials about my illness: Make me laugh, but also make me thankful that talking about IBD is becoming more acceptable.

18. Something I really miss doing since I was diagnosed is: Really it would be since my massive flare that kicked off my last four and half years – taking dance classes

19. It was really hard to have to give up: Some of the freedoms I used to take for granted, like walking as far as I want without thinking about it or dealing with the pain.

20. A new hobby I have taken up since my diagnosis is: Ugh, I don’t know about this one. I don’t feel like I have any new hobbies. Maybe my CCFA volunteerism.

21. If I could have one day of feeling normal again I would: Pack it full with activities and live carefree without thinking of the impact on my body;)

22. My illness has taught me: To be more patient and kind with others and myself. It’s also reinforced the “don’t judge a book by its cover” saying.

23. Want to know a secret? One thing people say that gets under my skin is: Oh you are so lucky you are: skinny, have so much free time, don’t have to work, etc… Why yes that's true, but trust me all those things come with a lot of baggage and aren't nearly as glamourous as they seem!

24. But I love it when people: Say they are inspired by my willingness to share my story, that it gave them the strength to tell their's or that they didn’t feel so alone in their struggles after hearing it.

25. My favorite motto, scripture, quote that gets me through tough times is: Hope is a talent, just like any other.

26. When someone is diagnosed I’d like to tell them: That it really will be ok, even when things are so tough, you are not alone and you are stronger than you ever thought you could be.

27. Something that has surprised me about living with an illness is: The power that my words have to others going through similar things. Not being embarrassed or too proud to share my story has been so healing for me and has connected me with some truly amazing people.

28. The nicest thing someone did for me when I wasn’t feeling well was: Love me unconditionally through it all – the good, the bad and the very, very ugly. When I couldn’t love myself through it, I’ve been so lucky to have a core group of people in my life who have worked hard to be there for me in so many different capacities.

29. I’m involved with sharing my story because: I don’t ever want anyone suffering from an invisible/chronic illness to feel alone or that nobody can understand them. That is such a lonely feeling. These diseases are both intensely physical and mental at the same time, which makes them doubly hard to manage at times.

30. The fact that you read this list makes me feel: loved