30 things about Me

I saw this on a friends blog and I liked it so here goes.

1.The illness I live with is:

Lupus, Rheumatoid Arthritis, Psjogren's Disease, vasculitis, Polymiositis, CFS

2.I was diagnosed with it in the year: 2001

3.But I had symptoms since: 1998

4.The biggest adjustment I’ve had to make is: Learning my boundaries–

5.Most people assume: That I will die soon or that I just want pity or that am full of crap because I do not look sick and I hide it well when I want to!!

6.The hardest part about mornings are: Functioning. I am stiff and sore and wake up as tired as I was when I went to bed!!!

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

8.A gadget I couldn’t live without is: not a gadget but My doggies, iced sweet tea and my kids

9.The hardest part about nights are: Not being able to go to sleep because my legs hurt so badly and the fact I can not sleep through the night.

10.Each day I take _9_ different prescriptions plus 3 shots weekly

11.Regarding alternative treatments :  not big into those

12.If I had to choose between an invisible illness or visible I would choose: not a fair question

13.Regarding working and career:  um — Trying to make a career out of something I love... Photography. Its something I can do that physically wear me down.

14.People would be surprised to know: that some days I think it would be easier and better for everyone to give up

15.The hardest thing to accept about my new reality has been: the good days are few and far between and my limitations seem to grow all the time.

16.Something I never thought I could do with my illness that I did was: lose so many friends

17.The commercials about my illness: What commercials? There is not enough awareness, media, press, anything about Lupus. would like to see Lupus awareness reach the same heights as breast cancer!

18.Something I really miss doing since I was diagnosed is: walking with the boys, riding bikes, sitting outside and just being outside in the summer! and it NOT making me sick!!

19.It was really hard to have to give up:  life as I knew it..

20.A new hobby I have taken up since my diagnosis is: twitter, facebook, crocheting, Photography started out as a hobby and turned into a profession.

21.If I could have one day of feeling normal again I would: Go on vacation somewhere for a week! Take the boys to florida and go to all the amusements parks and lay on the beach in the sun.

22.My illness has taught me: What is important and what is not in life. and that drama is not necessary and will make me sicker. I try to avoid any and all drama. another thing have learned is making sure can function and feel as good as possible is more important that hurting someones feelings because or
Go somewhere.

23.Want to know a secret? My family and friends that turned their backs on me when I needed them most CRUSHED my spirit and did irrepairable damage to me. its hard for me to trust people anymore. And people treating me weird when they find out I am sick it just makes it worse.

24.But I love it when people: Treat me nice, no matter what. And truly act like they care about me and my family and act like they are always TRULY glad to see me or talk to me.

25.My favorite motto, scripture, quote that gets me through tough times is: I have fought the good fight, I have finished the race....and...That which does not kill me only makes me stronger.

26.When someone is diagnosed I’d like to tell them: You are not alone, do whatever you have to to take care of YOU, and ask for help.. it’s ok

27.Something that has surprised me about living with an illness is: how Easily I tire and how much pain I am always in… it can be so debilitating

28.The nicest thing someone did for me when I wasn’t feeling well was: come to my house and cook supper for my family and make sure the house was clean and the boys had their home work before they went home.

29. the reason I am doing this is so others can learn more about me and how the disease affects me and maybe not feel so alone in this world!

30.The fact that you read this list makes me feel: Grateful that you took the time to read and hopeful that you are more aware