Wednesday, September 14, 2011

Invisible Illness Week

Generating awareness for "invisible illnesses"-- you know, the less known,less sexy ones, including lupus and it's related diseases, is a topic of conversation in Blogland this week.  Hosted by Lisa at Invisible Wellness here's my offering to raise awareness of my "invisible disease"...

1. The illness I live with is: Systemic Lupus 

2. I was diagnosed with it in the year: 1994 right after the big Northridge, CA earthquake that threw me into such a huge flair up it was (finally) easy to diagnose.

3. But I had symptoms since: Probably high school

4. The biggest adjustment I’ve had to make is: Learning how to respect the illness. It's not as easy as it sounds.

5. Most people assume: I am far more fragile than I am which just goes to show assumptions aren't all they're cracked up to be.  

6. The hardest part about mornings are: Trying not to throw the alarm clock across the room and my very stiff ankles

7. My favorite medical TV show is: Does "General Hospital" count?

8. A gadget I couldn’t live without is: Sadly, my iPhone but my electric toothbrush is a close second.  It's way easier to use when my hands are sore than a manual one.

9. The hardest part about nights are:  Climate change!  The meds sometimes make me really hot or really cold.

10. Each day I take between 10 and 19 pills & vitamins.

11. Regarding alternative treatments I've:  Tried several and found yoga and breathing meditation to be the most helpful.  Most of the others for me were a waste of time and money.

12. If I had to choose between an invisible illness or visible I would choose:  I'm totally vain.  I'd definitely take the "look good feel bad" kind but I sure wish more people knew about the disease and could get diagnosed sooner.  

13. Regarding working and career:  I was very lucky and worked successfully from home for 15 years... mostly in my pajamas.

14. People would be surprised to know: How much I miss being out in the sun.  It's hard being covered from head to toe with a hat the size of a circus tent when I'm outside, especially on a hot day.

15. The hardest thing to accept about my new reality has been: Prednisone is a huge help but, i yiyi what it does to my weight.

16. Something I never thought I could do with my illness that I did was:  Blog about it.  I didn't talk about my lupus for a very long time.  I was afraid it would have a negative impact on the career.

17. The commercials about my illness:  Are few and far between.  There is no "big money" drug to advertise so there aren't many TV commercials for lupus.  

18. Something I really miss doing since I was diagnosed is:  Spontaneously doing things-- like opening a jar or better yet, picking up a baby.  Some days the pain makes that nearly impossible.

19. It was really hard to have to give up:  The idea that I could work full time in "Corporate America" with traditional "9am - 5pm" job responsibilities. 

20. A new hobby I have taken up since my diagnosis is:  Yoga.  Before lupus, I'd have never given it a second thought-- Who knew!

21. If I could have one day of feeling normal again I would:  Wake up early, take a ballet class, meet loved ones for lunch, go to the park and hang upside down from the monkey bars with the kids then still have energy to make a great dinner and go out dancing with my husband..... without paying the price for doing all of that the next day.  

22. My illness has taught me: Grace

23. Want to know a secret? One thing people say that gets under my skin is:  "You look so tired." on the rare occasion I'm actually not!

24. But I love it when people:  Make me laugh out loud 

25. My favorite motto, scripture, quote that gets me through tough times is:  "When what you're doing isn't working, try something different."  Wyatt Webb  Simple, right?  But that took me a long time to learn, especially when dealing with my doctors.

26. When someone is diagnosed I’d like to tell them:  "Call me, we'll talk."

27. Something that has surprised me about living with an illness is:  I've learned to appreciate the small stuff that I never seemed to notice before.

28. The nicest thing someone did for me when I wasn’t feeling well was:  An acquaintance arrived at my home unexpectedly and brought all the ingredients for homemade chicken soup.  I was pretty sick at the time and she kept me company while I napped and the soup simmered on the stove all day. 

29. I’m involved with Invisible Illness Week because:  I know so many people with autoimmune diseases and we need all the help, support and awareness we can get!

30. The fact that you read this list makes me feel:  Pretty darn happy!  Thank you.

Until next time...
Cheers, Joanna J. aka Lemon-Aid

Photo Credit: © 89studio - #25094176 


  1. You certainly have a lot to deal with and it's hard for those of us you are relatively healthy to imagine. The bit of pain I have due to arthritis is miniscule compared to what you face. The instance of autoimmune diseases and asthma seem to be quickly increasing. Autoimmune diseases are something I never heard much about 30-40 years ago. I feel the increase has a lot to do with tighter homes and indoor bathrooms...we are just too clean for our own good!

  2. Hi Joanne! They have still not ruled OUT lupus on me but suffice, I have several auto-immune issues. Once you have one, you might as well say you have them all. Most are treated the same, act very similar if not the same and create the same tormet and acceptance for the patient. I'm glad to see your blogging about this and you showing up for IIW. It's important to not let others turn their back on the diseases amongst us. We are people too and we just want the same thing others want, to feel good. Hugs and come join my GIVEAWAY... maybe you'll win. Tammy

  3. Hi Joanna, thanks for stopping by my blog for Invisible Illness Week and taking the time to read my 30 Things.

    I enjoyed reading your 30 Things and getting to know you a bit. I can identify with number 23. It bugs me when people tell me how I am feeling based on how I look. It seems that half they time they are wrong and then I feel like I have to defend myself and why I look well or look tired.

    Warm Wishes, Hugs, and a few extra Spoons,

  4. JJ great post and I learned so much. I'm fortunate to not know anyone besides you that is with this heart goes out to you. I thank you for educating us all. I have another blogger pal with RA another invisible illness It's been an eye opening week for me. Best to you my friend. xo

  5. Very thoughtful and positive....and very enlightening.

  6. Thank you for sharing with us. This is good information to know. It is interesting that this disease does effect many people and yet, there isn't a lot of publicity about it, at all.

  7. Thank you for your witty information about Lupus.

    And I do like this blog design a lot - it's simple and light and easy to read! Very appealing.

  8. This was thoughtful and informative, but it peeled away some of the layers of fear most of us have when we think of chronic diseases.

    You are an old soul, Joanna, as evidenced by the wisdom your writings continue to offer. I love the design of the blog. I like a blog that feels light and roomy - as if I could sit back and put my feet up for a spell. And I'm so happy they got you involved. xo

  9. Lots of good things in this post. I also love the header. Great job.

  10. You did a great job with this blog, Joanna. As busy as you have been the past few months I know that creating this blog was a labor of love. Your heart is gigantic.

  11. You have done a great job! Love everything!

  12. Lovely post Joanna, and I like the design and the lemons.

  13. You are THE perfect person to help with this blog, not just because you have lupus but because of your way of looking at life and your wonderful writing skills.
    I had a rhumatologist diagnose me with lupus and Reynauds several years ago and then 6 months later he decided that was not what I have. So I live "undiagnosed" with that is called idiopathic neutropenia. And some new addition to that and my cold urticaria is necrobosis lipodica. I can't remember the name so I have it written down and carry it in my billfold. It is supposed to be a condition of people with diabetis, but I don't have any problems with my sugar. And the Dr didn't believe me when I told him my first "spot" on my skin of this condition was a mosquito bite that wouldn't go away. And where I had major shoulder surgery. NO ONE believed that it could be triggered by a scar or a mosquito bite. But I've shown a mosquito bite to hubby that hasn't gone away (got it this summer) and I can tell it is going to turn into one of those spots. The one on my arm, which started out as a mosquito bite, is now the size of a nickel and pretty ugly looking! I know this isn't a blog for undiagnosed people to come to, but thought I would share any-hoo!

  14. Joanna, you did a beautiful job with the blog. I love the header design. I knew you had Lupus, now I know more about it. As one with an Invisible Illness I can so relate to you on so much of what you said. great work at helping through your illness. hugs to you dear friend.

  15. Hi and thanks for stopping by my blog! I hope you keep writing about living with lupus, as you have a talent for combining truth and humor ... Looking forward to reading more. Take care!

  16. You did a wonderful job of creating this blog and for sharing this invisible (especially in the blog world) illness. You are a true gem.

  17. What a beautiful job you did explaining this hidden disease. I've worked with coworkers at school with Lupus. You my friend have an excellent attitude.

    God bless and enjoy the new blog! :o)

  18. I don't have lupus but I spent a lot of time worrying that if I went into a PhD program, I would get it. See, a friend of the family went back to grad school in his middle years, got his PhD and was hired as a prof at Pitt--and then was diagnosed with lupus. I decided to tempt fate and do my PhD--maybe the fact that I never finished it has something to do with my current lupus-free state.

    (Joanna, you know me and my sense of humor, so I feel relatively comfortable with this incredibly non-PC comment. Sorta...)

  19. Fabulous blog...congrats to you all for getting it together (special hug for Joanna!)