Thursday, early evening, most everyone had made it in and settled
into their hotel rooms. Slowly folks started making their way downstairs
to our meeting room: the Bellevue Room, located closest to the lobby,
main elevator and in hotel restaurant: Applebee's. Most all hotel
traffic had to see us or go by us wherever their destination was.
There
was a registration table set up in the hallway in front of the meeting
room. At registration, you receive a name badge and a packet with some
of the important things you need:
- map of the area
-
agenda
- most of the handouts you will need
We also had specially prepared goodie bags. La Dele and her helpers
did an exceptional job making sure that everything was just right.
About 7 PM, we all gathered and went over to the Cracker Barrel
restaurant and had dinner together. Lots of fun and laughter and getting
to know each other.
Friday morning:
8
am welcome and opening by Vix Kennedy
8:30 Dr. Thatcher's presentation - he is a very warm, caring and
wonderful person. Not that "I am God" kind of doctor we all are used to.
He was very easy to listen to, explained things well. He was genuinely
interested in us, what we had to say and hidradenitis. He left with the
promise to do a couple of online chat sessions; then graciously and
patiently posed with all of us for pictures from about 2 dozen different
cameras.
-->
Download Dr. Thatcher's PCOS 101 handout
After
a short break for lunch, Tammie did an information filled presentation
on filing for disability and SSI, including tips on what you can do to
make the process easier, faster and successful.
A short break and then it was my turn. I spoke about support,
localized and online: why is support needed, why is it important, things
we can all do to be supportive and a little extra stuff aimed at our
local contacts and group leaders. Just a note here, each and every one
of us can do some type of support, even if you don't really get
involved. Just reading messages and replying from time to time is
support.
Before closing for the day, the Petition committee shared some of the
things they are doing, their goals and results. Lastly asking for help
from all us in researching names and addresses of people needing to be
contacted by the petition committee.
Lynette from TN closed up with a short segment on depression.
Now begins free time: sightseeing, resting, chatting online, eating
out again ... one thing we for sure did was eat good.
Saturday
8 am
Started with a discussion about products tried, successful and
unsuccessful.
Wendy followed with an absolutely wonderful presentation on
aromatherapy, which included hands on instruction. She brought the
supplies needed so that we could all learn how to create our own bath
salts, body lotions and body oils. The room smelled great for hours
afterwards.
The HS-USA annual board meeting took place before lunch. Some of the
items discussed: approval of the 2003 minutes treasurer's report changes
to the by laws spending limits without board approval elimination of the
vice president position creation of a few committees and reporting
requirements of committees grant solicitation.
--> See here
for meeting minutes.
Short
break for lunch and we started the afternoon watching the 2 videos of HS
media exposure. One of Tammie on the Debra Duncan Show, a local Houston,
TX talk show. And David Strearns on a recent talk show local to his area
of CA. Both were absolutely fabulous and had most of us crying or in
tears. Lots of emotional discussion afterwards. Both videos will be
reproduced, done in a loop style video so that it continuously plays.
Information will be announced once they are available for distribution.
Our last discussion was about family and friends issues. It was
pretty much an open discussion with a few subject appropriate questions
from time to time to encourage more participation. This is one subject
that doesn't really need a lot of pushing for involvement because it
involves things that we can all relate to and really does us good to be
able to discuss it with others, face to face. Things like:
- my family/friends don't understand
- they think that because I don't look sick that I must not be sick
or hurt
- how come you can't cook, get out of bed or do the shopping
- all it is a boil, how can it be that bad
- self-image and self esteem issues
- intimacy
- lots more
This discussion was even more valuable because we had several
visiting family and friends in attendance. It made a noticeable
difference in their attitudes and understanding.
We had a break until 6 PM for free time. Then we met to do our gift
exchange and silent auction ... both of which were a blast. The silent
auction was on going during both days of presentations, with us going
back behind each other bidding higher for the various items. When the
totals were tallied, we raised about $300 for HS-USA from the silent
auction.
The gift exchange was fun, too. Those who participated brought a
wrapped gift from their state, area and/or region. For example, I had a
goodie bag filled with Texas items. We drew numbers to see who went
first and then as our turn came, we chose a bag from the table. It was
like Christmas opening our packages.
As
a group, we went out for our farewell time together at a really great
restaurant in the old German district of Nashville. It was the perfect
choice for our rally family as it was a family, sit down together at the
table atmosphere. Food was placed on the table in bowls and we passed
the serving bowls around the table. It was so much like eating dinner at
Grandma's house that we half expected to have Grandma come out of the
kitchen wiping her hands on her apron. Afterwards, we all set in the
outside in the beautifully landscaped garden area, which was very
beautiful and relaxing, complete with fireflies lighting up the night
sky. There were enough chairs and swings for all to be comfortable. The
good times, conversation and bonding continued here long after the
restaurant closed and the employees went home.
The rally was a fabulous time although not nearly long enough. While
it was great to get home, I wish there had been more time. There were
still things I wanted to say and share. I still had a few hugs left in
me.
If at all possible, try to attend a local meeting. You may not be
able to do the national thing but try to do something local. It is so
good for your soul and spirit to meet others face to face. You can see
hundreds of doctors, you can spend thousands of medical dollars ¡K but
none of it will do as much good for you as spending a few hours with
someone else with HS. It is the best therapy/product/treatment
available.
I
saw newly diagnosed HS people walk into the Rally with the usual
confusion we have all experienced, and walk away with their whole
screwed up HS life making more sense to them. and knowing they ARE NOT
ALONE!!
New ideas (and old ones too) were worked on and made sense of for
various projects.
Maybe I missed it, but as far as I could tell, nobody got angry at
anything anyone else said! (Discussion in person is MUCH safer and
better than by email.)
I heard a real Doctor talk for 2 hours and never say ANYTHING dumb or
wrong about HS. In fact, Dr. Thatcher is the most sensible medicine man
I have ever had the pleasure to meet. I feel honored.
During this conference we talked, shared, hugged, laughed, and cried
with happiness and relief.
We shared information, sympathy, ideas. And a whole lot of Love. You
could look at the eyes of the other people there and see much of the
pain of HS melting as we realized how much we have in common and how
much we care about each other. Our friends.
karen
writes:
