Jacksonville VF Conference or Bust

Guess where I am?   I feel like Carmen SanDiego right about now. (1990’s joke)

If you guessed Jacksonville, Florida then give yourself a gold star.

I am here to IMG_3639attend a 3 day conference hosted by the Vasculitis Foundation in an effort to better educate patients with Vasculitis.

This may not sound like much but you can imagine if your particular illness only afflicts 2-4 people per million worldwide.   Your chances of meeting another person with your illness is slim.  The greatest part of the conference, for me, is the chance to meet others with Vasculitis and in particular Churg Strauss Syndrome and just spend some time listening to each others stories and learning what medications may work or what some non listed side effects of some medications have happened to people.   Finally you no longer feel like the Zebra in the sea of horses.  You ARE with your herd and it is wonderful.

armadillo

Killer of Chevy Armadillo. Don’t trust these critters.

My trip to the conference wasn’t without my usual amount of craziness.  I came out to Florida a few days early and while driving at night from the airport in Orlando I manage to hit an Armadillo.  Who ever hits an armadillo?  Let’s just say, Chevy 1, Armadillo 0.   Knew I should have gotten that added rental car insurance.

IMG_3626

Always time to get off at a tourist trap on the road to see some gator gifts

IMG_3632

For 10 miles there were signs advertising ‘See the Baby Alligators’ so I did….

I was able to spend a few days with my parents in Florida and then headed for Jacksonville.   Excitement was definitely building as I would check my phone and see people posting as they checked into the hotel.  It was very exciting to see who was there already and trying to make plans to see them.  After I arrived I quickly was able to make contact with a few people from the Vasculitis Foundation’s Facebook group and we met up to go out to dinner.  Conversation was great and it felt so weird to be on of the ‘old timers’.

IMG_3579

Packing your meds for a 9 day trip — always interesting.

While I was listening I remembered those scary first few years and how it was all consuming and I never thought I would be around to see my kids graduate High School.   I realized how important is all that people with ALL types and ALL experience levels of vasculitis come to these conferences.

I think sometime we feel like we ‘know it all’, ‘seen it all’ and ‘experienced it all’ by the time we are nearing our decade of Vasculitis.  What we may forget is how much we needed mentoring and assistance during those early years and how we can now give back and help out the ‘newbies’.   Maybe we can’t give them the magic pill but we can give them hope, that we continue to go forward.  We have full lives and wake up putting one foot in front of the other and move forward.   Is it easy?  ” Hell No!”  but we do it because we all have hope for the future and the discoveries that are happening in medicine and in the field of Vasculitis.   Are we cured?  No. but we still have hope and can pass on caring and compassion that you will get through it and life goes on.

I will try to post as time permits in the coming days but please be patient because at times it is more important to be in the moment with the people who are here than be constantly reporting back.1912051_701754566577397_867637393788059066_n

If you are at the conference I can be found Friday morning at the sign in table.  Looking forward to meeting and probably not remembering many people’s names.  It is a pleasure to meet you all.

See Other Karen in Wonderland Blog Posts

Return to Karen in Wonderland main page

See more info about CSS /EPGA

 


Posted in Uncategorized by with 3 comments.

Comments

  • Great post my friend, and many thanks for your advocacy. Best wishes for the next few days and enjoy your time with fellow Churgies. Pauline. xx

  • dawn says:

    This is awesome! Hope it all goes well. I miss y’all already. XOXOXO

  • karen in wonderland says:

    Thank-you very much for your kind comments. It is because of you that I continue to write and share my thoughts.