Things you need to know....

I have posted in the past about my illnesses but I wanted to do it again to help bring attention to National Invisible Chronic Illness Awareness Week. So here is a list of questions off the NICIAW website......

30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with are: Sjogrens and Fibromyalgia

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: 2006....I was one of the lucky ones who didn't spend 5 or more years without a true diagnosis. My neurologist knew right away that I had Fibromyalgia and my PCP found the Sjogrens pretty quick too.

4. The biggest adjustment I’ve had to make is: Adjusting to the limitations my body has, and how to continue to get through the day while I am in pain. It is hard when you know that you have a lot of stuff that needs to be done and your body will only cooperate to do a few of those things.

5. Most people assume: I am just lazy.

6. The hardest part about mornings are: Moving. Seriously, between feeling like I haven't slept, stiffness and pain... just getting up and moving is HARD.

7. My favorite medical TV show is: I like all the blood and guts ER shows.

8. A gadget I couldn’t live without is: Cordless telephone. If I didn't have one I would miss most calls because most days I can't move that fast.

9. The hardest part about nights are: Nights always seem to be worse for me. I think it is because I push through so much during the day and when I finally stop to rest all that pain comes flooding at me.

10. Each day I take __ pills. (No comments, please) 13 pills (more than that if you count pain killers). Except on Saturdays when I take 20 (methotrexate is only taken one day a week).

11. Regarding alternative treatments I: Haven't tried any, I guess I don't know too much about them.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. I hate my disease and how it limits me but I am also ashamed of it and I am glad most people have no idea what I am going through.

13. Regarding working and career: I used to have one, but not right now. There is no way I could function all day at a job. They would fire me for falling asleep at my desk or for taking too many days off.

14. People would be surprised to know: That things that seem small to them are huge to me. Like taking a shower, that drains my energy. So planning anything after a shower is not an option. I need to rest afterwards. The same goes for household chores. I can't do the dishes and turn around and run the sweeper. Nope...it just can't happen that way. AND another thing that might surprise people is That even some of my closest friends have no idea how sick I really am. I am just too ashamed to let them know.

15. The hardest thing to accept about my new reality has been: that this is PERMANENT. Forever is a long, long time to feel crappy and hurt like Hell.

16. Something I never thought I couldn't do with my illness that I did was: This is hard. I can't think of anything I have done that my diseases would have prevented. I guess I better get out there and start trying new stuff, right?

17. The commercials about my illness: Fibro has commercials and I hate them. It seems like it is the "new" thing to have.....which makes me think people assume I jumped on the commercial bandwagon. But I had it before those commercials came out. And Sjogrens doesn't have any commercials. But I would love to see one....and see if anyone pronounced it correctly.

18. Something I really miss doing since I was diagnosed is: Riding my bicycle. I finally got the bike I always wanted and then got sick. That depresses me.

19. It was really hard to have to give up: My independence. Well, it isn't completely gone but on bad days I need lots of help.

20. A new hobby I have taken up since my diagnosis is: Blogging!

21. If I could have one day of feeling normal again I would: Play and Run with my boys. I would do everything they asked and enjoy every second of having an able body to do it with.

22. My illness has taught me: To slow down. And that being with family and friends is what is important.

23. Want to know a secret? One thing people say that gets under my skin is: Are you really THAT bad??

24. But I love it when people: Accept me as I am, Sickness and all.

25. My favorite motto, scripture, quote that gets me through tough times is: But I will restore you to health and heal your wounds, declares the LORD. Jeremiah 30:17

26. When someone is diagnosed I’d like to tell them: Tell your doctor how your feeling, TRUTHFULLY. If your hurting, tell them. If you are tired, tell them . And if they wont listen, get new doctors.

27. Something that has surprised me about living with an illness is: How people judge you so harshly and don't believe you since you look ok. It is very frustrating. But I guess I can't complain too much since I spend most of my time hiding my illnesses. BUT those times when people have found out and dismisses it as nothing really upset me.

28. The nicest thing someone did for me when I wasn’t feeling well was: Say it was OK to cancel or change plans at the last minute. (thanks Amy! You are the BEST!!)

29. I’m involved with Invisible Illness Week because: I think more people need to know that just because someone looks OK on the outside, they may be suffering on the inside. Don't judge!

30. The fact that you read this list makes me feel: Thankful. I hope that it helps to change the way you see other people.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com