30 Things You DIDNT know about my illnesses!

1. The illness I live with is: PCOS, Insulin Resistance, & Rhuematoid Arthritis (and because of the PCOS, infertility).

2. I was diagnosed with it in the year: PCOS in 1998-ish and I.R. in 2006 and RA in 2009

3. But I had symptoms since: PCOS, since puberty started... im not sure with the IR and RA for at least a year now... but probably if I was honest and really thought about it, 2 or 3 yrs.

4. The biggest adjustment I’ve had to make is: food choices with the IR and recently with RA has been my dependence on meds to help me sleep and then make it through the day.  And knowing that somedays I can be super mom.  That some days I just need to focus on getting out of bed and getting my daughter to school.

5. Most people assume: that I am this weight becuase Im lazy and dont exercise.  Its sooo not true... I enjoy exercising and going to the gym and playing TAG with  Madi (who is a super runner), taking walks with the dogs and being active!! I love to swim and hike and go outside or even stay inside and play wii or hide and go seek.

6. The hardest part about mornings are:  ugh, getting the stiffness out!!  i wake up and feel like my back and shoulders are frozen and I cant really accomplish anything until i work the stiffness out.

7. My favorite medical TV show is: I LOVED Er.  So sad.  But I also love Grey's, Private Practice and Scrubs. 

8. A gadget I couldn’t live without is: my phone.  all my appointments, and my life are on my phone!

9. The hardest part about nights are:  thats a tie between three things... falling asleep (always tough) the leg cramps (they wake me up at least 2xs every night) and tossing and turning and waking up every hour (happens at least 2xs a week.)

10. Each day I take __ pills & vitamins. 3-5  Im not a pill kinda person and I try to getmy vitamins through foods and other sources.

11. Regarding alternative treatments I: am wiling to research anything and try very few.  If they cost a lot of money, I know its probably bogus.  But I do use cinnamon daily for the IR and other anit-inflammatory foods to combat the RA.

12. If I had to choose between an invisible illness or visible I would choose: invisible.  As hard as it is living with this stuff and people not knowing and making assumptions about me and not knowing what im going through, if i had lost a limb or had a visible facial deformaty, life would be so much more difficult.  The weight gain and facial hair and black lines around my neck and knuckles are hard enough for me to have "out there".

13. Regarding working and career:  My kids are my work.  My career is a combo between being a mom, a wife and a worship director.  My path is the Lords and IM walking for Him.  If He wants me to do something He will equip me!

14. People would be surprised to know: that I am not as confident as I seem.  I think about what other people might think too much.  I almost always go over a conversation after its over to think about what I said.. Im always afraid of saying something stupid or hurting someone becuase I have a tendency to not employ my filter enough. 

15. The hardest thing to accept about my new reality has been: KNowing that I will probably never concieve and carry a child to term without some serious medical intervention.  And the reality that somedyas I cant actually go to the gym, cant play tag with Madi, or even can't make dinner.

16. Something I never thought I could do with my illness that I did was: lose weight.  I still have a long way to go, but i have lost significant weight over the last 4 years.

17. The commercials about my illness: are dumb.  Well, the ones for RA.  Ok, seriously, have you listened to the side effects for these drugs!?  Scary.

18. Something I really miss doing since I was diagnosed is:  nothing.  so far.  oh, ok, maybe i miss my coke slushies.  but i still indulge somteims.  But ive been really blessed that i have been abe to keep up my activity level... maybe not every day, but i can still do the things i like most days!  One thing I miss doing tho is riding my bike with Madi... i really regret it every time i do it becuase of the pain my hips afterwards.

19. It was really hard to have to give up:  coke slushies.  coke.  cheesecake.  (but i still treat myself to those things)

20. A new hobby I have taken up since my diagnosis is: ive gotten more into photography and editing since this whole thing started.  the idea of capturing memories in case life is different later and im not able to get on the ground and photograph a bug or my child has made me want to do it more now.

21. If I could have one day of feeling normal again I would:  clean my whole house, go bike riding with Madi, take a hike, and sky dive.

22. My illness has taught me: to respect others who seem "lazy".  You never know if they deal with chronic fatigue or pain or whatever!

23. Want to know a secret? One thing people say that gets under my skin is: Oh, if you need ANYTHING let me know.  Its HARD to ask for help.  Instead, ask me, can I make your family dinner tonight?  Or Id like to come and help you clean.  Or I can take Madi for a few hours so you can have some time.  Be specific in the ways you can help. And dont offer if you dont mean it.  Thats the worst!

24. But I love it when people: just come over and hang out with me.  Not expecting anything.  Or when people bring dinner.  I LOVE to cook, but usually by the end of the day, its hard to stand in the kitchen for a long time.

25. My favorite motto, scripture, quote that gets me through tough times is: Romans 5:3-5

26. When someone is diagnosed I’d like to tell them: its ok!  There is HOPE!  And Im here if you need anything.  Can I bring you and your family dinner?

27. Something that has surprised me about living with an illness is: the lack of empathy and sympathy from friends.  The lack of people offerng to help or asking if Im ok.  Especially from my church family... its as if knowing someone with an illness is a burden to them!

28. The nicest thing someone did for me when I wasn’t feeling well was:  took Madison out to the park and fed her so i could rest.

29. I’m involved with Invisible Illness Week because: its important.  I feel so alone in this sometimes.  I dont know anyone with this stuff in "real life", so its important to get the word out!  And I want people to understand what Im going through without pity and being someone charity case!

30. The fact that you read this list makes me feel: like you care.  Thank you.  This has been a hard journey and I feel so often that people just have no clue.  Its my fault though.. I like to pretend im perfectly fine!!

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