Friday, September 17, 2010

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is Lupus

2. I was diagnosed with it in the year:

3. But I had symptoms since: Teenage years, I remember having "butterfly rash" when I was 17/18 but it went away. Didn't know about Lupus then. I thought it was hormonal! 

4. The biggest adjustment I’ve had to make is: Learning to PAUSE, rest and don't go overboard with work and stress!

5. Most people assume: She's OKAY

6. The hardest part about mornings are: Waking up on mornings, feeling blur and like crap even after 10 hours of sleep! 

7. My favorite medical TV show is: HOUSE (Patients lie!)

8. A gadget I couldn’t live without is: My NOKIA E63 & DELL Notebook 

9. The hardest part about nights are: INSOMNIA 

10. Each day I take __ pills & vitamins. (No comments, please) : Just 10.5 for now, :) hehehe


11. Regarding alternative treatments I: Have been warned of Traditional Medicines screwing with Lupies kidneys - so, not too keen! I prefer prayers!

12. If I had to choose between an invisible illness or visible I would choose: I do not want to choose, I've been given instead, therefore invisible it is. Both are equally devastating.

13. Regarding working and career: Getting my dream job and having to let go! Part-time now. Full-time became to much to handle after landing myself in hospital TWICE a year due to "stress-induced (that's what I believe)" lupus!

14. People would be surprised to know: I have 13 cats!

15. The hardest thing to accept about my new reality has been: I go to the doctors or blood tests more than I go for movies.  

16. Something I never thought I could do with my illness that I did was: Being first passenger  boarding the plane (thanks Thai Airways) but in a wheelchair. Hmmm ...

17. The commercials about my illness: Those awareness ones make me cry big time!

18. Something I really miss doing since I was diagnosed is: Dreaming ... I stopped dreaming of holidays because I know I can't plan very far ahead. I became very practical.

19. It was really hard to have to give up: a full time job / long-hour of window-shopping!

20. A new hobby I have taken up since my diagnosis is: N/A


21. If I could have one day of feeling normal again I would: I don't know what's "normal" anymore.

22. My illness has taught me:  Not to expect others to understand. Can be hopeful though.
23. Want to know a secret? One thing people say that gets under my skin is: Not people, but doctors who say "You look fine" when I feel like a million cells in my body are suffocating!

24. But I love it when people: Just listen and offer a hug or prayer.

25. My favorite motto, scripture, quote that gets me through tough times is:  Holding on to my talisman and ask for guidance.

26. When someone is diagnosed I’d like to tell them: I am your friend! Talk when you are ready.

27. Something that has surprised me about living with an illness is: I appreciate little things more ... :)

28. The nicest thing someone did for me when I wasn’t feeling well was: My auntie listening and advising me from thousand of miles away when people nearby didn't even care!

29. I’m involved with Invisible Illness Week because: We are not ALONE and there are many nice people out there! :)  

30. The fact that you read this list makes me feel: I'm NOT ALONE!


    Brian said...

    Thank you for sharing so much infomation about Lupus. Nope, you're not alone fur sure, we will always send purrs to you!!!

    Old Kitty said...

    Hello Bin!!!!!!

    No, you are most definitely NOT alone!!!! You have 13 kitties remember! LOL!!

    Oh beautiful Bin!!! This is a brilliant list - I think all those who say "you look fine" should read this - it's about the most informative thing about lupus I've ever read. Most times we forget what the individual is feeling when they are ill - we tend to concentrate on the symptoms and the science of the illness - we don't really see the person suffering and what that person is going through inside with regards to their inner soul and spirit!! So thank you for this list!!!

    Me and Charlie are sending your tons of healing purrs and prayers!

    Take care

    Ginger Jasper said...

    Bin you are not alone.. You have lots of friends here in the blogworld and if we can help just yell.. Plus you have all those gorgeous kitties.. Thanks for sharing the info about Lupus. Hugs GJ xx

    Amy and The House of Cats said...

    Hi Bin! Thank you for sharing those with us - it is so hard to imagine what you are going through and this did give a little glimpse of how it is, just like your blog does. And we hope you know that even though all of us out here in the blogosphere are physically far away we are here for you and you aren't alone! Plus, heck, with 13 cats you are NEVER alone (heck with 6 I am never alone, with 13 there are probably times you want to be alone!)

    Katnip Lounge said...

    Your list really make me think about myself and others...these were very thought-provoking statements.
    It's been a helluva week for me, but I bet nothing compared to what you cope with. Except for the Cat part...we're almost equal there!
    xx momkat trish

    kxm said...

    Hi lupie:

    Thank you for your comment and the hugs and prayers! Sending hugs back to you and prayers for days of *feeling* good, not just looking good.

    Love and prayers,


    Nico, Simon and JayJay said...

    Thank you for sharing this list - it's hard for people to understand what you are going through sometimes... We will always be here to listen & have plenty of ((hugs)) for you!!

    Here's a big one from each of us: Nico, Simon, Jay & MomCory: ((((HUG))))

    Take care of yourself - & those kitties!!

    ~Nico, Simon & JayJay

    Junior and Orion said...

    Giant ((((HUGS))) to you and yours.

    doc said...

    i'm not sure how you'll take this -but if i had lupus & 13 cats, i'd be EXACTLY like you.

    except, of course, that i'm a guy.

    lupie said...

    doc - oouchh ... that hurts!
    but 13 cats came after lupus :D

    ULtradya said...

    lupus also called S.L.E rite?