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
Saturday, July 2, 2011
there is a fortress
Friday, July 1, 2011
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
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)
high rate of infections high use of antibiotics
bowel issues GIRD
MS scare and the testing for it lumbar punctures
early onset dementia
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
Thursday, June 30, 2011
Wow a lot has been going on here. My wrist will get xray today to see if a break is there.
Yesterday I met with the knee surgeon. On August 8th I will be getting a full knee replacement. That is if my wrist is not broken. Due to the knee cap scar tissue the minimally invasive is out of the question.
My greatest efforts are to keep in mind all of the things I have witnessed God do. That will get me through the challenges to come. Turning 50 this year has met the goal. No longer does my knee work however so it is time. My brace keeps me from falling when it locks up. A cane has been helpful too.
On notes of joy...We were rained on yesterday! Yes in June. It was a bazaar cloud in the blue sky. It was 4 inch drops! Just enough to wet the car thoroughly and the sidewalks. Later when we came into our community it happened again. I stood out in the heavy rain while the kids took the groceries in for me. Dash returned to enjoy it with me. There was a wonderful rainbow too. It had verga (rain that does not hit the ground) through it. Just beautiful. Found myself dancing in the drive way (well sorta).
Soon I'll go to see the sleep doc, then onto the hand care, xray and return to the hand guy to see outcome. I might get home with a cast. Purple I think if so :)
Steve's company had a HUGE successful .........well say it was a good day for the company. It will keep the place going. Long into the few ....accomplishments ahead.
Better get my shoes on.
Kids are wonderful so is the dog, canary and the chickens oh yes Hannah the hamster too.
Surounded by life. Living it with gratitude.
Hope that your well and smiles are upon you
Older women likewise teach the younger women...
• how to love their children
• how to be self-controlled
• how to be pure
• how to be keepers at home
• how to be kind and submissive (not subservient) to their own husbands. (See Titus 2:3-5)
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By Maya Angelou
That a man should have to seek Him first to find her.'
When I say... 'I am a Christian' I'm not shouting 'I'm clean living,'
I'm whispering 'I was lost, Now I'm found and forgiven.'
When I say... 'I am a Christian' I don't speak of this with pride.
I'm confessing that I stumble and need Christ to be my guide.
When I say... 'I am a Christian' I'm not trying to be strong.
I'm professing that I'm weak and need His strength to carry on.
When I say.. 'I am a Christian' I'm not bragging of success.
I'm admitting I have failed and need God to clean my mess.
When I say... 'I am a Christian' I'm not claiming to be perfect,
My flaws are far too visible, but God believes I am worth it.
When I say... 'I am a Christian' I still feel the sting of pain...
I have my share of heartaches, so I call upon His name.
When I say... 'I am a Christian' I'm not holier than thou,
I'm just a simple sinner Who received God's good grace, somehow!
Words have power. Here are a few of my favorite sayings.
- A warm cup of tea is like a cuddle with a friend.
- The North American Indians have a more eloquent word for ‘friend’ than we do in English. In their language, the word for friend literally means, “the one who carries my sorrows on his back.”
- Return with Honor
- The sage anticipates things that are difficult while they are easy, and does things that would become great while they are small. All difficult things in the world are sure to arise from a previous state in which they were easy, and all great things from one in which they were small. Therefore the sage, while he never does what is great, is able on that account to accomplish the greatest things."
- "HOME IS WHERE YOUR STORY BEGINS"
- “Live so that when your children hear these words they think of you… Fairness Caring Integrity Honesty Love Trust.”
- "O Lord help my words to be gracious and tender today, for tomarrow I may have to eat them."
- "No man has ever been shot while doing the dishes"
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This was given to me for the third time in just a few weeks.
"For the LORD your God has arrived to live among you. He is a mighty savior. He will rejoice over you with great gladness. With his love, he will calm all your fears. He will exult over you by singing a happy song."