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
 

thinking to build up courage

there is a fortress
it is in the reflection of all those things witnessed, learned seen and heard

time capsuled in this very moment

it is in these things spoken and listened too that i am shuffling aside from fear

dash embraces me
dove has her acts of kindness
Steve a gentle softly spoken hush that silences the loneliness, FEAR OF PAIN TO COME

i need to force myself to practice the gift of loneliness= reaching out

dash "mom...you remind me of everything that is good in the world"
dove" here mom, i saved this candy stick from vacation for you"
Julie "i love you, being here at your home is the closest place to heaven i have here on this earth"
a new friend from the pid conference"i am praying for your upcoming operation" an unexpected email she lives here in the valley. There are 5 of you who live here in the valley who i have met with CVIG
Amrita, Corey, Denise Annette Susan those others of you who have also hung in there with me.

this has been a hard season of grief with its many phases
it feels so good not to be stuck in anger. at the conference there were those who through personal experience understood what i have had to go through for so many years
at the big evening event i had to get up with cane in hand and just walk the room looking into each face at each table over 900 were registered from all over the world (many were spouse or friends of the paients. many patients were kids and teen who were in a different event.
what i saw...
in looking at each face...they were alive

i had it said once or twice" just as long as i stay alive to get the kids raised, even said it myself
this will not ruin us, there is help if we lost employment i will not just stop treatment and roll up and die

i am alive i see it in my face no longer a race with time,no longer fear of loosing my mind.
i intend to hold my grand kids someday!

MY HEART IS COMING BACK HOME WITHIN ME

typed one handed

Happy indepence

may the spirit of interdependence envelop us this weekend as we celebrate our nations independence.
this year i fell off the map. the oceans deep and wells dry became me
fatigue of spirit withdrawl into daily life
this year life felt too mundain and boring to even speak about.
coming to terms with health stuff
dripping of it speech repulsed me
being hurt and angry kept me pulled in and silent not just here but in life in general
numb
now the breath is returned with gaining better understanding
the primary immune conference made a huge difference
there i met people from all over the world who like me spent years off medical abuse through ignorance
there were others who were all but made to think they were nuts, hypochondriac longing for negative affection/attention
all the while knowing instinctively something was terribly wrong
even having effect on family and friends who became fatigued into doubt

anger consumed me as gratitude meld into pain
gratitude was all that it seamed was permissible in a social setting
why do we do that to each other?
encouragement must be inclusive if empathy
CVIG PATIENTS loose that privilege because when, or even if they get diagnosed properly all that care about them are so worn out by the years of complaint (justly so)

hidden illnesses under the cover of CVIG LOW IGa for me.. RED FLAGS WHEN ALL ARE RECURRENT
dental decay (18 root canals)
joint issues
fatigue
high rate of infections high use of antibiotics
asthma
copd
ear infections
hearing loss
bowel issues GIRD
MS scare and the testing for it lumbar punctures
early onset dementia
food allergy
cancer scare (breast,bowel)
strange issues unexplainable leaving doctors stumped


CVID LOW IGa leaves all the mucus membranes without the defense against bacteria

now meeting others and having someone really understand what it has been like...priceless
now i am independant of self doubt
justified of all the indignities
allowed now my own sorrow
perhaps now i can come home to my own heart
embracing my body as my own (such strong self doubt can leave one disconnected)

It was said to me that "my body is my friend" i have NEVER felt that way before

realizing how good it has been through all these years of misdiagnosis, ridicule and imposed shame. Well indeed it has been

thinking on all the things that suffered me without resolve only bandages that were often torn off in cruel suspicion...

i can see the goodness of my heart shining through. fear of becoming bitter...i am not bitter i won