Whats it really like 30 things you do not know about lupus

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: I have Lupus SLE, depression, and epilepsy, I am also a survivor of sexual abuse, I have bi polar disorder, And PTSD.

2. I was diagnosed with it in the year: In 2004 after I kept insisting something is really wrong with me.

3. But I had symptoms since: I have been sick off and on since I was 13 or 14

4. The biggest adjustment I’ve had to make is: Trying to take care of me instead of everyone else. I am still working on learning to say no, and not caring what others think.

5. Most people assume: That I am just lazy or seeking attention, because I do not look sick most of the time. Except when my skin falls off or I get lesions., then people try to avoid me because they do not know it isn’t contagious

6. The hardest part about mornings are: Making myself even get out of bed, I get up take a pain pill ( most mornings) and hope I can stay awake and do something productive.

7. My favorite medical TV show is: Was ER

8. A gadget I couldn’t live without is: My computer. I enjoy playing games and talking on café mom and facebook.

9. The hardest part about nights are: Trying to sleep I have to take Ambian or another sleeping aid every night which has led to an addiction pretty much.  I can’t shut my brain off1, I lay and watch the clock which makes it even harder to sleep.

10. Each day I take 16 different medicines. Some are narcotics.

11. Regarding alternative treatments I: I believe in the power of good, and having a positive outlook.

12. If I had to choose between an invisible illness or visible I would choose: Keep this one, I wouldn’t want my kids to see me look sick.

13. Regarding working and career: I can get a job easy, however no one wants to keep anyone on staff who has to call in constantly.

14. People would be surprised to know: I do care what other think of me, and I take a lot of stuff to heart. People tend to see my I don’t give a shit attitude, which is mostly an act!

15. The hardest thing to accept about my new reality has been: Not knowing when one of my illnesses will be triggered.

16. Something I never thought I could do with my illness that I did was: Live. I thought I was getting a death sentence.

17. The commercials about my illness: There are no commercials for Lupus. (my primary illness), I honestly haven’t seen many about the other illnesses I have either other than depression.

18. Something I really miss doing since I was diagnosed is Being active.

19. It was really hard to have to give up: Not having to depend on people, relaxing in the sun, enjoying life.

20. A new hobby I have taken up since my diagnosis is: Blogging, meditation, and poetry

21. If I could have one day of feeling normal again I would: Take my kids to see the ocean on a nice sunny day.

22. My illness has taught me: How to learn to accept things I have no control over.

23. Want to know a secret? One thing people say that gets under my skin is: when people assume I am not really as sick as I say I am or talk about me or how dirty my house is or how I don’t wait on my husband hand and foot. How I make my kids do chores.

24. But I love it when people: Try to learn and educate themselves, ,and make an attempt to understand.

25. My favorite motto, scripture, quote that gets me through tough times is:  I give you a new commandment: that you should love one another. Just as I have loved you, so you too should love one another.
John 13: 34

26. When someone is diagnosed I’d like to tell them  Do not give up! If you think something is wrong do not accept what people tell you demand treatment!

27. Something that has surprised me about living with an illness is: Some days I feel like I can help others and be positive.

28. The nicest thing someone did for me when I wasn’t feeling well was: My kids have really helped me, even when I was being psychotic, or in a manic state. With my lupus they honestly do try to help most of the time, and believe me I am hard on them sometimes, something I am not proud of. My children are amazing.

29. I’m involved with Trying to raise awareness because  I want people to educate themselves, and know that people can be sick without looking sick. I want people to keep an open mind and open heart to the fact that people suffer from many different things they may not understand.

30. The fact that you read this list makes me feel: Like people really care, there may be a cure someday, until then I feel like if one person reads this and learns something then at least I tried.