Friday, July 8, 2011

Primary Immune Foundation Conference


there was an fund raiser this was my offering a real lesson in diligence.
It was strung but I had to do the findings tearfully one handed in pain.
it sold

it was $20 a night for valet so I parked down in a lot after dropping off my bag at the door. A very kind young man came for me in an electric cart and took me to the lobby. when i got there it was a bit early to get the room
the clerk however seeing me cane with knee and wrist brace took mercy
he set me up into a different room checking in several hours early
see the number three, God and I have this little game we have played for ever His presence is reminded me in the three. over over and over this way for many a year
this was the type of conference rooms
no longer 49 i went over to the 50's and up very strange thin the first time your reminded of it
the first evening was a huge event
this was the 30 th year anniversary of the PIF. A foundation that began in someones kitchen. a dear woman who lost a child due to primary immune dif. she wanted to have a foundation where those of us with the rare disorder could affiliate and disseminate information to one day perhaps cure this thing
click to enlarge this is the information on the basic
my adaptive immune issue is mainly the B-cell issue with secondary low IgA issue
i met a wonderful woman who helped me get my heart back. she and I sat for a long visit in the lobby after we had met up down below at the conference.
I was walking (hobbling ) to the escalator and she came up and asked if I would mind if she walked with me. So funny she reached into her bag and whipped out a collapsible folding cane. We were so kindred a spirit. She too a seer really helped me get past the anger. Home again into my heart.

Suppose that why you see me here again.


this was the only money I spent a very expensive $30! breakfast to the room the morning of the infusion at the hotel. I did not need to use up any of the energy i had. the conference was almost two walking blocks from my room.

That was the most amazing bread!


click on image




that's the in room safe
pay per use refer and bar under it
NEVER touched it! $$$$$$$$$$
at the conference there was all the free drinks of my choice. soda water, juice any thing. even at night an open bar. Strange though to think of immune folks drinking. everything that would be found in my room pay per was at the conference for FREE!
 I have used the techniques that were on the bed to make mine now. The top sheet is under the pillows, blanket folded down at the pillows edge. Head pillow folded in. Throw at the foot. It is fun to get to see how the Ritz does it.

what a palace! the way the pillows were folded in made for a beautiful bed

It was a wonderful rest.
the last day with infusion and the nurse with me all morning i used a wheel chair to transport from room to conference floor. On that day a very sweet fellow gave me favor. He called and got me a LATE check out Sunday so I could sleep through the morning. I had until 1P.M. !

SATURDAY night the kids and Steve joined me at the gala event. It was so wonderful. This place NEVER left me hungry. EVERYTHING was included in my scholarship. The kids swam in two of the pools until they closed. They went on home that night as did I the next day late into the mid day.
Refreshed. The trip was so helpful in healing the anger left by the many years of misdiagnosis, torments and indignities. Most of us had experienced them who had late diagnosis.

1 comment:

Denise said...

I am so glad that you have found such a wonderful support group and of course your heart is healing! HE is involved in all parts of your life.....

Where was the conference? Did you have to fly? Praying for you always my friend..........

I did hear about your dust storm.. I just cannot imagine that..... It would not be pretty for people with Asthma.....did you manage to keep it all outside?


Well, time for appointment to get my hair cut...... sooooo need to get up and out..... Take care my friend...... Love ya

Older women likewise teach the younger women...

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