Tuesday, February 8, 2011

"Mommy what happened to you head?"

This week is Sarcoidosis awareness week which was kicked off this past Saturday at the 11th annual K.I.S.S. (Kick in to Stop Sarcoidosis) event thrown by the Foundation for Sarcoidosis Research. Its always a fun time with great music, plenty of top shelf liquor (Grey Goose is usually a sponser) and fun activities like a silent auction, wine roulette, and photo booth. One of the most fun activities is the Kissino where attendees buy chips and play blackjack and craps in order to cash them in for raffle prizes. This year we even had a all female KISS cover band called Slutter (costumes and everything). The people watching is always fun too as you have people from all walks of life attending the event.

Herbie and I have been going almost every year for the past 7 years. Dealing blackjack and helping with the silent auctions and raffles. We were able to help raise an additional $600 by donating a weekend at our timeshare which was kind of exciting for us. This year however was the first year that we had to find a babysitter.

Saturday I had gone to get my hair cut and colored because at 29 the hair that I have that is changing colors is not just gray but stark white and I was starting to blind myself. My son had not seen me prior to me descending the stairs in my party dress, full make-up (he hadn't seen me in any. Ever.) and my new do. As I picked him up to say goodbye he looked into my eyes and said, "Mommy? What happened to you head?" as he patted my hair.

Oh sweetheart you have no idea how loaded that question is! Or how many times I knew I would be explaining it that night. Of course I told him I got my hair cut and he seemed to accept this answer as he wiggled down to go play. But for the adults that asked why I was a volunteer at the event (and in away asked me what happened to my head) my answer was a little longer but probably just as simple. I volunteer because something happened to my head (and lungs)and this foundation is the only one that had information to help me. And my time pails in comparison to the generosity of the people who support the foundation and support the goal to find a cure (and a cause) for this disease. This wretched, dibilitating disease that makes people become candidates for lung transplants and pace makers, and robs them of their abilities and their lives. So I do what I can so that perhaps I will not be listed amongst those from whom so much has been stolen.

While Sarcoidosis has been a royal pain to have, I do need to also recognize that it has given me much. For example the moment with my son. And while he may not be my son beyond this year he is a light in my life. As is his sister. Neither of them would be in our lives if Sarcoidosis hadn't shown up too because we probably would not have traveled down this path of foster parenthood.

4 comments:

  1. Hi Rhi, Im so glad you made to KISS. I want to go next time.
    I just realized you have been dealing with sarcoidoisis for 7 years!
    I have symptoms since 2009, but only started treatment last july, 2010.
    I was diagnosed with neurosarcoidoisis only, at least for now.:)
    Im currently on prednisone 40mg, going 30 next week., also started MTX 2 weekends ago.This weekend will be my third dose, and the plan is to get off prednisone.
    You have been inspiring me a lot. It is nice to seee how you are living your life and going after your dreams.Flavia

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  2. How is the MTX going? I have trouble with the nausea. Acupuncture helped me with that. And prednisone did nothing for my neurosarcoid. In my opinion I'd rather be on MTX than prednisone. I HATE that medication. KISS is always a fun event! I got an e-mail that we raised over $100K this year! yeah!

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  4. flavia said...
    Hi Rhi, dont tell me about hating PRED. Look! 5:00 am and im awake , mind running a thousand miles hour. Ins't this med crazy? My first round of pred, made me REALLY depressed. This time around is making me SUPER HYPER!
    answering your question, pred did shrink my lesions , but once i reached 5 mg they returned, as well as symptoms (daily headaches and on and off blurry vision). So my doctor gave another round of pred and introduced MTX (i requested for MTX). By the end of month we will check if lesions are growing or what. At this moment no symptoms :)
    I m so HAPPY they KISS got all this money! I have faith they will find some good meds for us!

    February 12, 2011 2:20 AM

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