I have an Invisible Illness

30 Things about My Invisible Illness You May Not Know

1.) The illness I live with: totally unknown. a big mystery.

2.) I was diagnosed with it in the year: undiagnosed.

3.) But I had symptoms since: 2001.

4.) The biggest adjustment I've had to make is: taking naps and canceling plans.

5.) Most people assume: I am a totally healthy 32 year old.

6.) The hardest part about mornings are: opening my eyes.

7.) My favorite medical TV show is: Grey's Anatomy.

8.) A gadget I couldn't live without is: my Kindle.  when i'm in the hospital I can just turn it on and download a book to keep me entertained.  my iPad is another gadget that I couldn't live without.

9.) The hardest part about nights are: realizing I can't get everything done.

10.) Each day I take: 26 pills... some prescribed, some vitamins, some OTC

11.) Regarding alternative treatments I: have not tried.

12.) If I had to choose between an invisible illness or visible I would choose: invisible.  it's nice to have a little privacy.

13.) Regarding working and career: I was forced to go from a full time case manager at a small non profit to a part time employee with no benefits because I was in and out of the hospital and constantly ill.  I now work 30 hours a week and spend my day off at various doctor's appointments.

14.) People would be surprised to know: I have the best of intentions.

15.) The hardest thing to accept about my new reality has been: I can't do everything.  I'm good for one fun activity a weekend.

16.) Something I never thought I could do with my illness that I did was: work.

17.) The commercials about my illness: there are none.

18.) Something I really miss doing since I was diagnosed is: shitting in the toilet.

19.) It was really hard to have to give up: all the fun stuff I want to do.

20.) A new hobby I have taken up since my diagnosis is: making jewelry!  i absolutely love taking random pieces (someone's trash) and turning it in to a wearable piece of art (someone's treasure)! etsy has been my therapy.  www.rhubarb79.etsy.com

21.) If I could have one day of feeling normal again I would: go back to school.

22.) My illness has taught me: to never give up and be persistent.  doctors don't always have all the answers because, like me, they are human too.

23.) Want to know a secret?  One thing people say that gets under my skin is: "God has a plan."

24.) But I love it when people: give really, really good hugs.

25.) My favorite motto, scripture, quote that gets me through the tough times is: "it will be alright in the end.  if it's not alright it's not the end."

26.) When someone is diagnosed I'd like to tell them: "I totally get it."

27.) Something that has surprised me about living with an illness is: how strong I actually am.  strength doesn't always have to be physical.

28.) The nicest thing someone did for me when I wasn't feeling well was: listen.

29.) I'm involved with Invisible Illness Week because: it's time to be visible.

30.) The fact that you read this list make me feel: honored.

When doctor's meet me they congratulate me on being a fantastic patient.  A patient that pushes the limit and makes them think outside the box.  The problem?  Most doctor's don't think out the box.  They see you for 15 minutes (if you are lucky) and decide (a) to put you on a new medication (b) order another round of blood work or (c) refer you to a different doctor.  No one knows what is wrong with me.  My colon broke so now I have an ostomy- why did my colon break?  No. One. Knows.  My esophagus broke so now I get it "stretched" every 6 months so I can swallow.  I have neuropathy in the mornings and Raynaud's in the winter.  I can't be outside in the summer because of my sick heart and I have kidney stones just hanging out in both kidneys.  

It may be "invisible" to you, but it's very "visible" to me.