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30 Things About My Invisible Illness You May Not Know ~ a Lupus blog

In honor of National Invisible Illness Week... here is my "Lupus List" 

30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with are Systemic Lupus Erythematosus (SLE / Lupus) and APS (Antiphospholipid Syndrome)

2. I was diagnosed with it in the year: 1982

3. But I had symptoms since: 1980

4. The biggest adjustment I’ve had to make is trying to find a balance of being a “Lupus” patient and having a life.  Each day is a constant struggle to find the balance.

5. Most people assume that I am fine that Lupus is NOT a real disease.

6. The hardest part about mornings are waking up in pain, after battling night sweats and insomnia.  Waking up tired, is no fun.

7. My favorite medical TV show is Dr.OZ

8. A gadget I couldn’t live without is my laptop/cell phone/iPad 2 ~ three way tie, I need to be connected!

9. The hardest part about nights is relieving the pain enough to be able to fall asleep.

10. Each day I take between 8-18 pills & vitamins. Depending on severity of pain and symptoms.

11. Regarding alternative treatments I personally use any and all available methods to manage my Lupus.  Why is complementary medicine is still considered alternative?  After consulting my primary care physician I seek whatever treatments I can afford.  These treatments include acupuncture, massage, therapy, herbal supplements and exercise.

12. If I had to choose between an invisible illness or visible I would choose WELLNESS! I would never choose Lupus.

13. Regarding working and career, I have become an advocate for sharing that “Lupus Awareness is fun, but Lupus is not!”  Does being “LA Lupus Lady” count?  Unpaid advocate for Lupus! Writer of tweets, blogs and social media expert.  Seeking employment as a passionate advocate for Lupus or your brand... I love being a "brand ambassador" (check out the blogs/videos from #Fashion140) 

14. People would be surprised to know that I am in more pain that I let on.

15. The hardest thing to accept about my new reality has been… that after 28 years my new reality constantly changes.

16. Something I never thought I could do with my illness that I did was get married.

17. The commercials about my illness are not enough, together we must work to fund research, educate the public and medical professionals while supporting each other.  Without apologies to the writers of "House" sometimes it is Lupus.

18. Something I really miss doing since I was diagnosed is… enjoying a carefree day in the sun.

19. It was really hard to have to give up the idea of ever being a “birth mom” Many women with Lupus can become "birth moms" but in my case it is not.

20. A new hobby I have taken up since my diagnosis is water aerobics. (while at an indoor pool or wearing a BIG huge floppy hat)

21. If I could have one day of feeling normal again I would run on the sand of a sunny beach without worries or SPF.

22. My illness has taught me to find the balance and find strength where you can, when you can.

23. Want to know a secret? One thing people say that gets under my skin is “well, you look good” as if I am making up the fact that I feel like… Lupus!

24. But I love it when people listen, offer unconditional assistance… making me laugh and a good hug are always happily accepted.

25. My favorite quote that gets me through tough times is from Shakti Gawain “Everything is Unfolding Perfectly” hard to believe it most days but still my favorite.

26. When someone is diagnosed I’d like to tell them to remember that they may have Lupus, but Lupus does not have them.

27. Something that has surprised me about living with an illness is that I am still alive… when I was diagnosed I was given 5-7 years to live…the only surviving member of my first Lupus Support Group.

28. The nicest thing someone did for me when I wasn’t feeling well was make me dinner and fill a tub then help me out of the bath after I was relaxed and unable to stand up on my own.

29. I’m involved with Invisible Illness Week because I may not look sick but I am.  My name is Amanda (online “LA Lupus Lady”) and I have Lupus.

30. The fact that you read this list makes me feel as if I am making a difference by sharing that Lupus Awareness is important.  Invisible Illness Patients matter.

Wishing you Wellness...


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