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.

Masive Dust Storm Last Nigt

What a dust bowl around here. Leaving  a store after shopping last night was surreal. Approaching the door was so strange the cars were barley visible. It looked like it snowed.
Today the air was really really bad. The kids took the early morning well. We had a dental appointment. No cavities for Dove, Dash has three. Dove gets a bite guard. Kids have to go back in two weeks to do the work. $250 at that days end. Goodness! That my % of $1000.!
We came home out of the air. When I went out again in the afternoon a breath mask was in order.
Never have I seen such a litter of dust EVERYWHERE!
Over a half inch of it on my car when I came out of the store last night. A sweet lady helped by taking in the electric cart. I now have a handi cap parking permit. Helps to have a shorter distance however the morning had me all but in tears of pain at the dentist visit.
Resting it tonight, tomorrow as well laying low.
We have no property damage at all. Blessed, to be envied, fortunate are we.
Folks with pools face a terrible ordeal.
Yesterday we had a lovely time in my sisters pool. Just the kids and I.
I have partial use of my hand tonight. It is so wonderful to see it is healing. All the many appointments are coming along. We got a little computer desk to replace the other corner desk. Steve moved it on into the corner by my bed. Things are coming together. Got a toilet riser, jammies with stretchy legs and a heating pad last night. I have a loaner walker. I will make a bag for hanging on the walker to carry things. I think I might make a pocket to have set under the mattress and hang beside the bed. I got on line to a medical site and just perused it. Got a few real good ideas and have saved so much. The riser was only 20$ where on line it was almost $40. Got some skids ($12) for walkers to use in an old shower seat used in the garden. Wash it up and it will save another $60. Some slippers and slipper socks. Think the shopping is all set except a few little things.
Now pre surgery physical therapy may get a rx to do two visits just to set a strengthen program for my quad before hand. That way I will get up sooner. My old friend the PT said that my surgeon is so good that his patients are two weeks ahead of others treated by other guys. Nice to hear.
I'll have my physical and dental next Tuesday. Michelle will receive the kids early for a play date (thanks for the help sweetie). Monday an appointment with the immunologist. My nurse has set the new schedule and has given me some good counsel that the ICU is just as 'dirty as the wards. She said the ward would be better for the knee expertise. The Knee Replacement Training class is set for the evening of the last day of Doves Jr high camp. Perfect timing all around. I will be able to attend the last day with her as requested. Dash will get his books near that time as well.
Julie will help me set up the first weeks lessons for Dash will be doing distance learning on line at home next year.
I'll due two IVIG three weeks apart if all goes as planned and then my IVIG infusion will be two days before surgery and my immune numbers will get up real high.
So many things set up that is just July! At the end of the month a phone visit with the psychiatrist for a med check.
There will be a home nurse/ and or PT, or a week in a rehab hospital in my future after 3 days inpatient. Then several weeks of PT.
Today a thought
We have spent so much on me over the years and the coverage of insurance. We could of built a mansion...
Me a mansion. A house upon a hill.

Songs over us

This morning again as for the last week or so the songs over me have returned. This morning an old balard only a few words of it

tambourines and elephants all playing in the band

wont you take me for a magic ride du ta du

bother me tomorrow for today I'll have no sorrow

du du du du at my front door.

of late many tunes fly
one that is rather poignant is a song that has some words in it of a rather different power.

that's me in the corner

that's me in the spot light loosing my religion

I thought I heard you laugh

I think I thought I saw you smile

This new passage into 50 has taught me about really looking hard at what I believe and why. I will never let go of my faith or my friendship with Abba Pappa. My belief in the full meaning of Grace (unmerited favor ) and what Christ Jesus has and is doing.To feed the orphan and widow in the hour of need to love God with all my heart, mind and soul. To learn love better loving self as learning to better love others.

Religion to me is pre conceived notions about God. Judgments that occur that divide and separate. Of that I am loosing my religion and building a stronger relationship. Freedom in that for self, well it is in overcoming the fear of the judgments that divide. If they divide perhaps that is love not fear...loving so much as to not want to cause another to stumble in our own freedoms.

that's me in the corner

that's me in the spot light...

I think I thought I saw you smile.

that was just a dream...

Another one is a tune with a line...

No I won't back down

backing down just silences our own voice