Monday, June 28, 2010

Until We Meet Again

I have met my people, and they are tired.

Last weekend I attended the Immune Deficiency Foundation 2010 Retreat in Rye Brook, New York. It was extremely exciting to meet people who have primary immunodeficiency disease (PID). As I have mentioned, I have CVID, one of nearly 150 diseases in this [dysfunctional] family. I was, well...I think "relieved" is the word, to find out that a lot of the stuff I experience every day is NORMAL. Feeling fatigued, achy and overwhelmed is not uncommon. I felt lucky to benefit from the experience of other women my age who had more years under their belts dealing with this disease.

I also met a celebrity -- the IDF Zebra:

Prior to this weekend, I had met only one person with a PID. He was 4 years old, and I told him that he was now my support group. He promptly went back to playing with his toy truck.

When my mother and I decided to go the IDF Retreat, we didn't know what to expect. By the time it was over we were both thrilled by what we had learned and who we had met.

What I learned:
  1. Stop taking Levaquin immediately.

    I spoke to a doctor following a presentation about antibiotics, and mentioned that I was taking Levaquin for bronchitis and had begun to experience muscle and joint pain. He looked concerned and proceeded to scare the bejeezus out of me by explaining that this side effect could lead to long-term tendonitis and fatal muscle ruptures. I proceeded to go home and sleep for 19 hours on Sunday, another lovely side effect. Needless to say, I'm done with Levaquin for ever, thank you very much.

  2. If I ever feel like treatment is too overwhelming, I need to just suck it up.

    I learned from several parents that their children administered their own treatments. Mind you, these children were 5 and 6 years old. I am at least FOUR TIMES their age (ahem...) so I really have no excuse for whining. If someone who is still expected to throw periodic temper tantrums and demand cookies for breakfast is mature enough to handle weekly subQ infusions, then I should be too.

  3. The Doral Arrowwood Hotel in Rye Brook New York has the most amazing breakfast and lunch buffets.

    At lunch, we spotted mussels in a fresh broth and my mother sprinted over to get us a plate to share. Seriously, it was ridiculous, and I'm going to crash another event there so I can get some more of that buffet action.
I learned a lot more than that -- and will continue to write about it -- but thanks to a Levaquin-induced stupor I can barely keep my eyes open. Sweet dreams, my fellow PID-people.

May we get the rest we need and the cure we deserve!


  1. I found your bog on our FB froup. I just turn my blog about raising a bipolar child to include have PIDD. It's
    I read that about Levaquin and was shocked. I am on the more severe end of CVID. Levaquin was the dr's only option for years due to my drug allergies. My muscles and joints are shot. Now, I can only take certain oral antibiotics. Reading your blog, I feel like we nee more down to earth fun and funny blogs like tis out there! Keep up the great work!

  2. Levaquin is a nightmare. I woke up to a knee TWICE the size of my other one. After they gave me Levaquin for a sinus infection that had the fortitude of seventeen armies. Levaquin=bad. Now that I do sub-q infusions weekly (immunoglobulin) I have won the fight against antibiotics. Sort of. I went to Hawaii for two weeks, got a staph infection and bronchitis and am still trying to recover.

    Good thing I can work at home. Glad I found your blog.