Common variable immuno deficiency (CVID)

Hello folks 

Two years later for this is a re-post

Life is greatly improved and infusions are so much easier. I had no idea how long it would take to be normal again. Life is sweet and I am grateful. I also had no idea how many souls are out there with the same issue just floating in a no mans land. Many have found solace here. Please forgive my lasting absence. It took a while to accept through things grieving process. Also within the last 18 months I had a total knee replacement and labial repairs on both shoulders. Life does continue and it is full of promise. It is a joy to me to hear from so many of you who walk dazed in the CVID diagnosis. I will be coming home here to the blog. 

 

Original posted in June of 2010

 

Genetics are a huge part of our makeup we are a generational being...

The test have returned and this is the diagnosis faced in my life now. The most difficult thing is the sadness regarding the nieces and a nephew who are suffering in the dark as to why their bodies are self destruction. They have no medical intervention. This greatly effects life expectancy. I must inform my siblings, the generation of those there after and so on to be tested and to seek intervention. To do this while guarding the hearts of those who have no comforter.

I have an 8 year old and a 12 year old. The infusions can sorta wipe you out a bit for a few days. Best case only one every 4 weeks. But it sounds more likely that it will ramp up to that. I need courage. I need tenderness to strengthen my heart. Knowing that siblings are in a untreated state, know now what took my moms life. All these thing flood my mind a white wash of thoughts.

The general fatigue and lethargy is so progressive. This has gone un-diagnosed for some time now and many years of repeated resistant lung infections of bronchitis and pneumonia. You know I see the sweet mercy. I asked why? Why do i get all this freaky illness that have left me feeling humiliated, demised,demeaned and folks  including medical and family acting as if this has all been in my head. YEARS OF THIS! IT LEFT ME DOUBTING MY OWN CHARACTER AND SANITY AT TIMES. SOMEONE i THINK IT WAS Marsha SENT ME A LITTLE BOOK ON MINISTERING TO THOSE WITH CHRONIC ILLNESS. well at THE HOSPITAL DURING THE INFUSIONS FOR MYSELF THERE i WILL BE...WITH A CHOICE OF THINKING AND BEING THERE FOR ME AND CONSUMED WITH "me" OR EXITING THIS VORTEX INTO THE COMPASSION NOT ONLY FOR MYSELF BUT FOR THOSE AROUND ME. 

with THE SAME COMFORT WE HAVE BEEN COMFORTED WE SHALL COMFORT OTHERS.

Must be a lot of folk needed comfort cause here it comes. Please remember to comfort my heart my dear friends and family. I will need the bracing up as I go forward. I can not let this stop who I am within my heart.

Man, it has really been one thing health wise after another for so many years. Understanding is the beginning of knowledge it will be then that I can walk in wisdom once I exercise the knowledge there is for me to gain.

A Wonderful post gave me a nice dose of 

God works all things to his Glory

Everything to harm us is turned to glorify Him

May this walk given me to undertake be done in such a way that i remain unfettered by fear, bitterness and the potential effects of  treatment. 

Treatment usually consists of immunoglobulin therapy, which is an injection of human antibodies harvested from blood donations:

• intravenous immunoglobulin (IVIG, most common treatment in the US)^[9]
• subcutaneous immunoglobulin G (SCIG, relatively new treatment in the US and UK)
• intramuscular immunglobulin (IMIG, less effective, painful)

This is not a cure, but it strengthens immunity by ensuring that the patient has "normal" levels of antibodies, which helps to prevent recurrent upper respiratory infections.
IG therapy can't be used if the patient has anti-IgA antibodies but in this case, products low in IgA can be used; subcutaneous delivery also is a means of permitting such patients to have adequate antibody replacement.
IVIG treatment can be received by patients with a complete IgA deficiency if the IgA is completely removed from the treatment.

Disease Information

Hypogammaglobulinemia - Overview

Hypogammaglobulinemia essentially means antibody deficiency, and includes numerous primary immune deficiency diseases such as Common Variable Immune Deficiency (CVID). Unlike AIDS or chemotherapy-induced immune deficiency, primary immune deficiencies are considered inherent, perhaps genetic.

One of the rarest forms of hypogammaglobulinemia, Severe Combined Immune Deficiency, is nicknamed the "boy-in-the-bubble" disease - a somewhat popular example known to movie viewers.

Both Common Variable Immune Deficiency (CVID) and IgA deficiency, whereas antibodies are decreased but not absent, are much more common. The approximate rate for CVID is 1:50,000 persons and the rate for IgA deficiency is as frequent as 1:750 individuals.

As the immune system is quite complex, CVID often involves additional defects in the immune system.

Common Variable Immune Deficiency (CVID) is mild to life-threatening: dependent on resistance to infection, treatment success, and if complications occur. Significant risk of developing certain cancers and autoimmune illness also exists for patients. 

Inherited Immunodeficiencies: Common Variable Immunodeficiency (CVID)

Alternate Names: CVID

Definition

Common variable immunodeficiency (CVID) is an immune system disorder which typically  affects males and females in the third or fourth decade of life. However, it may also be seen in children. It is characterized by low levels of antibodies (another name for immunoglobulins) in the blood stream and an increased susceptibility to infections.
The diagnosis of common variable immunodeficiency is suspected when the patient has low levels of antibodies in the blood stream, a poor immune response to vaccines, and a history of recurrent infections. Patients with CVID develop recurrent infections of the sinuses, ears, nose and lungs. They may also develop enlarged lymph nodes (palpable glands in the neck and groin) or an enlarged spleen.  Infections of the gastrointestinal tract may also occur. Individuals with CVID have an increased incidence of malignant lymphomas and autoimmune disorders such as lupus,  rheumatoid arthritis, inflammatory bowel disease and autoimmune hemolytic anemia.

Influencing Factors

Pattern of Inheritance
Genetic factors do play a part in the development of common variable immunodeficiency. However, there is no single gene mutation (mistake) that can be identified. Environmental factors may also influence the development of CVID.

Treatment Strategies

Treatment for common variable immunodeficiency includes monthly infusions of gammaglobulin (IVIG) and oral antibiotics to prevent infections. Prognosis is variable and may depend on the severity of lung disease prior to diagnosis and the occurrence of autoimmune disease or malignancy. Patients are encouraged to lead a healthy lifestyle, which includes good nutrition and regular exercise.


More detailed information can be found here.http://emedicine.medscape.com/article/1051103-overview

The Memories of 911 were very personal to me. (a repost from 2007)

Red Square

First Sight December 2001

I took great pause in posting yesterday on that day of dreadful remembrance.
That day, for me, was made a very memorable personal day.
After the start/ stop/ start of the adoption of our son, a match was made on a child who was born that March. At six months of age the children were released from the Russian data bank to anyone who was certified and who wanted to adopt them.
That day I stood there in my kitchen just a short week after we accepted the match of our son who was starving and abandoned in the un-adoptable side of a Russian orphanage. I stood fixed at the kitchen set at the first blow to the towers. I was on the phone to my husband as I gasped at the blow to the second tower. I wept knowing that lives were lost. As I saw the souls leap into eternity, that day, my dreams were possibly going down with them. I had waited 20 years for this son.
I fell to my knees in horror knowing that the world would never be the same and that possibly the little boy half a world away might loose his chance for life as well.
I am sobbing now just remembering this... I knew that God had made a promise to me. I had lived in that promise for most of my adulthood. I saw the promise of so many lives lost that day as I wept, As I weep now.
We were kept on standby as the new President of Russia was changing all the adoption laws. We had poured out financially to our limit and did not know how we could possibly make this happen. It was out of our hands. My husband was in the process of his plant closing and he watched 6000 people loose jobs around him. We never knew if the next day may bring a pink slip for us as well.
My Son was half a world away starving, languishing and I could only pray for him not knowing if he might be as our little Natasha ( an infant we had to turn down, she was far to ill to survive and our Miss Fiction came home to us instead three years prior) will always be, simply a child of my heart never to have a Mother and Father. That child is most likely deceased now.
We watched as our troupes entered the Northern Afghanistan boarders. Our Sons orphanage was only 500 miles as the crow (or bomb) flies. We just prayed for peace in the region. And wept at night and longed for him in my arms. We were having so many things (battles) during those few months. I had to face a Radical Hysterectomy because they could not stop the bleeding I had. The doctors wanted to put me on a type of chemo tho stop my cycle and the internal bleeding. It was an injected rod that would have to be surgically removed if the side effects were to bad.Thank God for Wisdom I said NO> we could not risk being in a third world country with it in me. Only to find out it was Bad stuff that was being used as a lucrative pharmaceutical extortion plot reveled on national T.V. the night before I made the final decision (God kept me safe). They planned surgery for early December. I had a child half a world away and I was about to have my own reproductive system removed form me with empty arms (save that my sweet daughter was in them), yet I could not hold my daughter due to the internal bleeding and several surgeries to remove the adhesions so I could stand up straight. I had end stage endomeitriosis.
The date was set for surgery. A week later We were called as one of the first families to get to fly out internationally. We were at great threat of kidnapping however. We made a trust for our daughter and had to choose. To go get our son out, or be safe and let him go. HE WAS MY/OUR SON!
There are many dangers I can not speak of due to those who travel after. It will not be as doable now the laws changed that spring. We were under the wire by 2 weeks and so we were able to do only the one trip. Since then families have to make two or more trips to adopt.
We got there in great danger we were to not even have our voice heard in public. We screamed "American" just by our dress. But to voice in public could be life threatening. We were in Russia three weeks after the secret service entered the Northern Afghanistan region. We were there just over two weeks without my girl in my arms and a very sick infant who was at risk for retardation and dwarfism.

So 9-11 is a very personal time for me. It reminds me of great loss yet of great hope and promise for the future.

Post script. The day the judge said yes was the day I was to have surgery. It was performed 6 weeks after we got our Son home from Russia. I was post menopausal with a 3 year old with special needs and a 10 month old Who was very ill all with raging hormones.
Our Son recovered from the hypothyroidism 3 years later. and the threat of retardation passed as well as the dwarfism..He has special needs however don't we all :)
Our daughter stayed here in the states with her elder Paternal Grand Parents who risked so much right along with us.
We were able to receive an adoption reimbursed of $6000. from our employer only months before the 25+ year carreer was over.

The new body

why wait!
There are promises of a new body some day when this one passes away.
Well in the morning I will be stepping ahead of time.

So many amazing things these last busy several weeks of getting ready.

My surgeon has spoken extensively with both the immunologist and the other ortho surgeon that I have attended all these years. The two surgeons met at the hospital and opened lap tops discussing my case in detail. I am told by my infusion nurse that this is unprecedented.

Thursday when getting cortisone injections in both my right shoulder and left knee I was told of this. I was also stunned as the doctor of 5plus years tentativly asked me...
"at the risk of offending you may I as something. Could we pray together over your surgery?"
I was so deeply touched at this gentle kindness.

For $60 I was given over $600 worth of walker, wheel chair and riser arms for the walker so as to protect my right shoulder impingement and the injury of late to my left wrist (a torn cartilage).  It has been a trying season for me.

All around me however are little kindness that blow even seasoned believers away.

I will have surgery in the morning, kids over at the Michelle's, for the night. Steve will be able to stay with me. They will only allow him on Monday as to keep infection risks lower. Infusion went well yesterday. I slept around 5 hours then a good 8 hours over night.

I know that many people are praying and for that my heart is full of gratitude. The kids are beginning school and so they could use it too.

I will be sent to rehab at a care facility for 10-14 days or so once out of the 3? days in hospital.
I am suppose to stay calm and this lap top is stressing me out. It is heavy on my knees too.

I'll close and go rest a while.
In all things his presence is palpable. It is good with my soul.

Happy Easter

This is the most favored Holiday of the year for me.

May it be the day of great favor for you too.

The tasks at hand keep me so full each day that my presence here has fallen to a low priority of late. Having to measure my energy is challenging. Life is good. Each day our little family is growing and maturing with grace even in the most trying of days. Kids are doing real well in school. The three day weekend is a wonderful thing. They are a delight to be with. Bless you all

I trust your all under the sweet favor

Savor it.

told you so...

:)

See you later...

It will be a good homecoming.

Someone bless these seeds I sow

"They that wait upon the Lord, shall renew their strength, they will soar on wings as eagles; they will run and not grow weary. They will walk and not be faint" (Isaiah 40:31 KJV).


The thought occurred to me to try to take Dash down to the clinic we once used when it was under grant. No longer under grant perhaps they might take our insurance. They will have record of him. They will have the vision and hearing testing at one place. 
I will wait until after Saturday for my strength of body through infusion will help me along.
I sense Dash is afraid. He may need once again to use his hearing aides. He does not know about the Ushers being an issue. Waiting in this moment I will wake them and begin a new day.


Wings give me wings

Marriage Monday My Testamony

My Testimony

I was the illegitimate ( learned in my twenties) , last child, of eight born, into the generational curse of white supremacy, bigotry and worship in darkness. It was the intimacy of torture that caused me to meet Gods angles when I was a very young child. On the alter of those who worshiped Satan lay my body. My parents drunken nearby at a lodge fire. My parents had gotten themselves mixed up in a cult. Perhaps unwittingly.Gods angles came and took my spirit to the forest places. It was there that I first knew love and safety. For God caused me to be free from the body that those who were workers of darkness were all but destroying. Abuse unparalleled was my existence with no human rescuer. Were it not for the forest angle and many other spiritual servants of God who kept me strangely dis-connected when it was necessary I would have gone mad. They were my friends. You see, I was as a child under the authority of those who in their own free will chose death.  They choose to worship in the darkness and pursue the wicked gain . They were blinded by the perverse lie they had believed. 

Yet I was chosen by Him to survive. Because I had known his name. And I called upon Him. I don’t know just how I knew his name when I  was so little. But somehow someone, even perhaps He Himself introduced me.

 Psalm 91;

I turned 20 with a bible in hand, in danger, and psalm 91 in my heart. Suicide was my morning mission if this failed me. That day a woman named Leslie came and gave me an avocado. She feed my starving body then, she fed my spirit.  She lay an open bible upon my lap it was opened to the reference of John 3;16 “For God so loved the world that he gave His only begotten son that whoever would believe upon him would not perish but have everlasting life. 
She feed my belly then my spirit. I said "I believe that"

 Many events happened in that next two weeks of my life. The most significant was a literal battle over my soul. After several hours of  war between the heavenlys' God said it is finished she is mine you can’t have her.  I have a purpose for her she is mine. My body had raised men who were holding it down.  It had flailed on stone and no bruise had been left. I am His!

The next several years had included most significantly a prayer that all I wanted was a home of my own and a man that loved God. I have now been with that devoted man for twenty nine years. The first 10 years were spent in a recovery that baffled even the most of experienced of medical professionals. I have undergone vaginal, abdominal, rectal, nasal, dental and inner ear reconstruction’s. My mind has become whole with only some small effects left by three small shirring tears in the inner brain tissue. This in itself is very rare for those who have know such violence and darkness. Many medical professionals have given God the credit for the amazing results they have witnessed. My recovery culminated in the telling of the murder I witnessed. As another witness had notified the police in that town of the same event. We were both kids at the time of the murder. She had told only a week or so prior.

After seven years of rest we decided to begin our family. A dream I could not hold onto hope for. My faith that His will be done gave me the vision to pursue an adoption I was very  extensively examined and found to be totally recovered having proven all phases of restoration. We were honored by the judge with our certification to adopt any child. . Our certification to adopt was an acknowledgment of a job well done. We adopted two internationally kids. One in 1997 the other in 2001.

It took a tenacity that is a gift given to me to keep my promise that someday I would tell on them for what they were doing.. A promise that helped me survive and more than that, to overcome. In my last hospitalization I was given by God a song that helped me through some of the darkest of memories to be exposed.

<Song> For we’ve been made more than conquers through the blood of Jesus Christ, So hold on were getting stronger every day.  There is no need for you to run away.  Brother’s and sister’s well now the time for prayer cause don’t you know the battles all been won. For Jesus said there would be tribulation and He said that I have overcome.

I kept my promise. When I was surviving those dark days I swore that I would tell on them as they drugged me, also “if I don’t let them make me like them, and if I don’t let them make me crazy, I will give myself a life some day I promised." Through Gods divine mercy and grace I am alive and that promise was kept. I am loved. I am His.  He is mine. I have known His love and I am profoundly grateful that He chose me before the very foundations of time.

The experiences I have known were not Gods fault, as to blame Him.  I was under the authority of those who did not know him. I had the privilege of knowing evil with intimacy yet seeing righteousness and Love prevail. This privilege has afforded me many gifts talents and insights. I have intimately known the profound depth of Gods love.

          I am reassured each morning with the gentle kiss on my forehead as my dear husband tinder’s me. The times are few now that I fall into the memory of those days in my dreams. I awake each morning to Gods very real presence, with a flush of joy as my son says good morning and my daughter wakes for the day. As I open my eyes I see a palace where the peace of Christ abides with utter abundance.

Through the years the medical issues have been more than a challenge. The last few days I have even needed to remember who I am. Yet through it all His loving me is sustaining me. I am tired and I am wherry but try with all my being not to become worn out. 
When my eyes become clouded with the way others may see me it is time to wipe my glasses and try to refocus. I grieve at the mass imperfections of the difference between reality and the visions that kept me going. Everything has its season. Reality is yet another curve in the path. One to come to terms with. Yet He has kept me living.
Coming out of it all with P.T.S.D. (post traumatic stress disorder) and recently diagnosed with a rare gamma globulin immune disorder CVID common variable immuno-globulin deficiency. It may either be a hereditary (found mainly now in children in this generation).
given the level of stress issues it is no wonder that my immune system well needs sustenance. That comes by way of IVIG infusions every four weeks. My body is getting older now.

How did God get 'out there'...He asked

With my child looking to me to explained, this is how my heart expressed my thoughts on it.

He listened silently
I believe that God is not 'out there' that heaven is not 'out there', it is right here. Within our midst. The kingdom of heaven is 'at hand'. We are as within a wheel within a wheel. When we are here on this plane we have the ability to allow 'light' God is The Light, The Truth and The Way into our rheum.
The light is around and within this wheel if we so desire, so choose to open up the barriers that separate us from it. When I thin the line that delineates the two (light and dark) light prevails.
Taking the kids into the dark pantry I lit a lighter once the darkness had been established by closing the door. The darkness could not remain in the light. When the light is there LOVE is there. When we shut ourselves up into the dark we remove our self of that light present, that love there wishes to illuminate.
They know that they have the power to illuminate the lives around them as well. That light will cast away the darkness that the WILL encounter.

Living illuminated in that light is heaven at hand

removing the light is hell

Hell is not some place in the magma, it is absence from the light. The Love. Absent from truth. Lost along the way. We become dead men walking.

It is the light that illuminates our way. It is for us to fight the barrier the withdraw from the light.

God is here as is heaven just beyond that vial that separates us. That Vail rent is accessible when we believe that the man God (Christ Jesus)  walked among us. We just make it all far too complicated.

There was a sparrow in the chicken coop. I thought long about my explanation to my son. In my spirit a choice to thin the line occurred. Opening the door I willed that sparrow out. wondering if that light could prevail over that little frightened bird before it hurt or exhausted itself. It came to that light and flew out.

Again the next day it was that my Son saw another sparrow flailing itself in the coop. He attempted to enter and catch it. Calling him out and aside again willing that light the sparrow came to me.

 This gave me great pause. 

I am remembering who I was before the religion. Before the 'churchianity' enforced a delineation through rules. Fears over displeasing God by doing 'it' wrong laid in varied regulations set up by men who have become bias through limiting understanding and wisdom.

Heaven is here at hand, Hell is also here at hand.
Even in our worst prisons the harshest punishment is isolation. Separation from that Light, Love that friendship with Divine

With many pulled away under the shell of self preservation light fights to find a way through. It is there that way. It is only in our will, our choice to risk letting the light illuminate us. Showing us where we are really needing illumination on our path.

Religion can leave a person afraid to even place one foot in front of the other. For fear of doing 'it' wrong. Light catches us if we trip, stumble even when we fall. Light comes into lives showing the health to our spirit, soul and bones. Light erases the delineation to where we are one in His Body and no matter the coarse of our body here in this rheum we are more than what the eye can see.

Exercising this enlightenment this week has caused many Holy things to occur.

Children are so good for our old minds.
Last night without sleep these things filled my mind. Great care was encompassing me over my dear daughters special needs and future. It was at that moment I saw it. Oh how distracted I have been with the concern over the darkness regarding her safety, her future. I willed at that moment...Light. In an instant the release was profound.
Now I have been playing with this, willing light at every given opportunity.
As Sleep wrapped me in the dawn I saw a vision of the chickens in the coop. They are captive there. To keep them safe from the hawks. To protect the crops so the chickens don't eat them up. However they are egg laying machines...no longer chickens. Chickens scratch and roam. I have kept them. Kept them 'safe' from harm by not allowing them risk.
Today while harvesting oranges I opened the coop door and willed these well trained birds out of the coop. They were not too pretty sure of it but one by one they came out and began to be 'chickens' picking and such. They kept under the canopy and near me. Up and down the ladder watching to see that they did not get into harm. When I was done sitting on the bench, saying nothing I willed them back into the coop. They walked into it and I shut the door. We were each content. I was however convicted of living in fear.

My children have been kept. Through fear they too have become as prisoners in a way. All in the name of protection. At nine and thirteen they must become able to know that they can be successful. How clever God is at giving them the room to do so. I saw myself letting loose (not free of) the cords that hold them fast.

When the kids came home Dash desired to ride his skate board. Instructed to gear up to do so. To their surprise I offered to take them over to the park by the grade school. There are so many unattended kids it would just blow your mind.

Dash said 'mom it is mothers like you who make it real hard to fit in'...Looking at him I heard his heart. 

This was my compromise. Once bike and board were unloaded they were allowed to go with friends to the school just across the street. I sat in the pickup and embroidered. They soon came across to a known child's house. Then over to the park. All the while I kept invisible. They would come by the truck now and then. After two hours I backed the truck up and pulled up to them as if I had just arrived. They were also allowed to sit in the bed of the truck there and back.

Now this all blew my husbands mind...me living light (no fret) and in the light.

While at the park 20-30 unattended teens were blanketed in the 'light' as I willed it to them. 

Because WE LOVE HIM Psalm 91

sitting here the thought that fills me is 'what can you do'? I mean really. In life the real thing any of us has power over. We plan.
Yet is is only in the willingness to embrace loving God that our personal choice takes shape.
There will be trials in every life. There will be opportunities to overcome by embarrassing the Love that surrounds us, and if we receive it it fills us.

Because we love him.
Because I love Him.

We received a call this evening to confirm the appointment to go down to Good Samaritan Hospital and see the surgeon who did the port. Now we had made this appointment knowing the visit would take place. Knowing that I love HIM knowing that HE loves me.
We have been instructed that I will need to fast tonight, throughout the morning. There is  a possibility that the port is malfunctioning a slim chance that they might need to replace it. A chance that a simple aspiration my need to be preformed. HE LOVES ME.

Do I believe that? YES I do.

Is it in my power that I can choose to trust that love that surrounds me. Yes it is. After supper my big thick comforter surrounded me. I lay on the bed and curled up in it and slept a while. Blocking out every distraction. Every sensory bombardment. Embracing only the stillness that will keep me in that glow. Keeping the edges of my humanity supple and welcoming of said light. Trusting by choice, resting the outward man to abide in the Holy, the spirit.

If you think of me bid me that light fill every dark corner of me. I thank that loving light, that intimate friendship with my God in whom I trust. No evil will befall me. What will I say of Him, my God and my fortress...He is the light that comes into me. With everything in my being the opening up and receiving the glow of that warmth cold disperses. Everything else is a mute point. 'I am OK, Everything faced will be alright. I choose to believe this NO MATTER what the day brings. I know that it is not about me. It is about the flow of that light. It is not about us when those thing common to our mortal state challenge our resolve. Stand let nothing distract you from the love of God.

Rejoice with me. That this Love surrounds me. Delight with me that I know this as my skin is holding me in. In Your sending the warmth of your Love for HIM my way... prayer. It leaves me in good company.

Love to all of you. I'll let you know the Good news tomorrow. Oh I just did. This is the Good news that I love Him, his presence. His loving kindness that surrounds me GOOD NEWS.

On Christian Bullying and Apple Pie

 Good Evening
As I sit here forgive me I am having a slice of fresh out of the oven apple pie. Tart Granny Smith organic apples. Now to insult these fresh apples (at least nutritionally) one of those ready made store bought crust. It was easy. I had the crust as a free thing on the last shop. Now normally I would roll over in my grave before I'd eat it but alas...
Well the pie was made with Dove joining me.Oh it was my hearts delight too have her hands in the flour and sugar. "here mom let me do it". JOY! utter joy to have her ask to do it, to join me and be happy to be with me doing it. 

 My cup running over...two tea bags as well. Some Good Earth cinnamon in my huge mug Dash gave to me last year. Apple pie and hot cinnamon tea oh yaa..

Tonight I had a real long and lovely conversation with Denise (Shorty Bear). How she misses you all so. She told of how lovingly so many came up to help and each bill is just covered. 

Underneath the umbrella of all she holds dear. Her trust in  and love for the Lord she is still getting a deluge of trial so keep her in your prayers.

Our conversation refreshed my soul, mind and body. She is REAL it was a real conversation. 

So often now I avoid trying to have that here. 

"If you ain't got nothing good to say don't say anything at all"...

Maybe some of you grew up with that one too. Sometimes it is the things that may not seam so good to say are the best things heard. Being real with one another. 

I came to my daughter today real. Told her my heart on an issue. Found a way to compromise with her.  Funny with all the fuss she really seems to respect me for it. 

Also told my little core family my heart tonight. It was good for my soul. Rested just a spell and that is when my dear friend came on the telephone line. There for me as a friend is. Real Listening not giving advice unsolicited or judging but pure love. Acceptance of all the warts and all. Like a good freeze off of hurt she nurtured my soul. I hers as well.  We are told to be strong, courageous, grateful now if were feeling were not we at least need to act as if we are.

I have been thinking a lot about bullies. Ya know the ones who make it real hard for your kids to feel safe. The true face has to hide lest it get taken for a ride of guff. Now some bullying is clear mean. Some is unintentionally mean.

While I was in prayer the other day the Lord talked to me about Christian Bullying. The kind that if your humanity shows your faulty in doctrine or being lead astray. Do this just right now, if your not doing this just right it will show.  Now God forbid these bullies when the trials hit real hard. We have to hold one view of our trinity public. That one that is our true spiritual self. What about that true soul. what of it. What of the true emote? 

Just like on the play ground we better hide it. Or the bully will see us coming a mile away.

Vulnerability is the bullies playground. 

What of maturity where vulnerability is to be commiserated?

What of it? Well if a sister, friend come to you bemoaning the reality of the challenges faced. Do we negate the soul, the emote only to supersede it with the spirit. No. The spirit remains, Gods love never changes.

It you speak of spirit and the tea is poured to do so speak of spirit. If a cup be empty however then fill it with water and quench the thirst without pouring hot water all over the guest. 

If a soul is thirsty for a companion of the soul the emote to hear and listen to the emote...hear.  Hear emote direct the emote through the land mines but do not dump spirit where spirit remains along side standing the guard it is intended too. That's Christian bullying.  Mercy that is just plain bullying given falsely Christs name. For I would never really perceive HIM ever acting that a way.

Blessed are those who...remember. 

Not deceived, backslid-den, lack of faith, or even punished or condemned.

There will always be greater and lesser

That does not negate that there is a you.

Now I have seen this of late from the pulpit as well. 

Just thinking out loud.

Now I have received little bully just always been afraid of them. 

So I sorta hide on the playground.

:)

So this an attempt to come out and own the swing set a while

Bullies thrive on fear they look for it.

How do you respond to 'Christian Bullies' ?

Happy Thanks giving and receiving of LOVE.

Your kindness has warmed me. Your knowledge uplifted me. The beauty that is within you has touched my heart. Life is to be shared, carried, and walked beside.
Your prayers have sustained me, smiles have restored me. Memories of times we have known, thoughts we have shared they echo in my mind. Often reminding me of your journey calling me into intercession on your behalf.
In these silent weeks stillness removed my word, voice and thoughts from being expressed. I have been grieving, healing and getting stronger. A stronger hold on who I am, what I believe and the legacy it is my hope to pass forward.

It has been very challenging to find my way through the mind fields to remain uncommon. To keep peace I tried being another to keep others comfortable allowing things around my life that I am opposed too. Other things that I was afraid of being rejected by many of you who may hold a different value.
When I stopped being who I am, saying what I think with bold abandon I became common. When voices of opinion removed my own I faltered. Yet I falter. As do we all.

I have an elder sister who would it seems to remove all of who I am. It has been very difficult to speak freely. I have removed myself from face book. This is more my style. Privacy feels calmer here.

Although this life affords me so many many things, opportunities and people to love and be loved by, I grieve. Grieving the things that I might try to keep myself positive about, thankful for and humbled by.
Learning to adjust to 3 good weeks ending in a few days of all stop, guarded from bacteria of others and even my own family well it is a process. Lessons of pasing myself during a time that so many things were left unattend during the gradual slowing due to the place that the cvid had left me. With all diligence I pase between not burning the infusions off too fast by over doing it, and trying to get my home in order, children raised well and a marriage that is strong and loving.

Having the infusions saddens me, but I can not tell you that.

For I am to be grateful, as I am yes.

If I am asked to mask, it would be that I remain silent. For the truth of where I have been at is not lovely. My mind has not thought 'on these things'. It has been in shock of sorts. After all I have done, all that has been accomplished it was in my mind that all the struggles would end once the accomplishment of "giving myself a life". The reality is not in the hope of what was thought to be. Even as it was often a driving force to keep me going. It is that only is there another road to walk. It left me staggering a bit to see that those targets, that keep us focused on a matter will move and shift through time. It is a natural thing.

I was so set that it would on day be finished. I have had to and am coming to terms that it is what it is.
Yes yes I am thankful for all it is , who I am. The PTSD has changed my abilities and that has hit hard to think of all the medical interventions that came down to that. the PTSD causing the memory stuff. Boy I was just humiliated. It felt humiliating another blow to my heart. One that really hurt.

Non the less my dear friends my life is different than what I had hoped it would be. This is a normal thing perhaps for all of us.

To all of you You matter to me. Emails are rare and comment too. At times it is all I can do to read you, listen to your hearts. Your posts all so often feed my soul. Your comments build me like a brick wall. Some days it just amazes me how ya all help to refocus my vision. My love redirected to my maker and off of the things around me. Thank you for that, it keeps me like life. Words of life. sorta like an infusion of it's own :)

To all of you I am so very deeply thankful for who you are. Your hearts have touched my heart and kept it often strong at a weakened moment. Strength is gaining in the sorrow comes healing. Terms of acceptance is being reached.

The sorrow of my Eldest Sisters passing, touched that in her death the cvid was discovered and again she gave me life. She the one three years in to (some 20 years ago) recovery came to defend the truth I told. She saved my sanity too. It is all too holy. This silence has been a bit of that too. Walking on that holy ground of witnessing Gods loving gentle hand upon my life.

Each day even if it does not FEEL like it I am so very aware that the gratitude deeply placed within me remains.

For this I am Thankful. Happy Thanks giving and receiving of LOVE.

I am a tenacious old bird

Today was a pretty huge day for me. After a nap that began just as the kids left for school at 8 am and ended at 1 in the afternoon I was astonished I slept so hard and so long.

When the kids came home from school a neighbor boy rang because no one was at his home. He knew to come here that I would be here. Later we all went two doors down from his home to his grandmothers. His grandfather was dead in the master room only the week or so before. Strange to go there. We three ladies (both us moms and the grandma) had a delightful visit as the children swam in the pool.

We were invited to go to a party at their church. Now that type of church was one that was same as the one in my childhood. Trying to reach my husband was met with a message that he would be working late. (overtime ! woo hoo) So following the goose and the joy of my kids we opted to attend the party at the church. This was a huge step for me. Dove dressed in my gown that is black and glittered with gold and a crown. Dash was a hockey player. It took a lot to do this. A whole lot. I rode in their car so as not to be behind the wheel. Took a stress medication along with the hand of God.

Keeping a vigilant eye on my kids the parking lot had a "trunk treat" very small and few. The other side of the lot was a very small carnival of games and treats. Hot dogs and the most amazing caramel apples were also at hand. YUM I ate two of them. At times I relaxed and found sweet pleasure watching the laughter and delightful fun on my children. By the way did you know I am 'the best!' Dove declares it so.

I am tired tonight of mind and body. My heart beats fast with what was accomplished within me.
They were (seemingly) innocent and kind people. Generous to the kids. Friendly to each other. A prayer offered before the event was met with a "see mom it's not too bad" by Dove. She gave a hardy vocal AMEN! The religion is non Christian except per the view of those who attend it. It was strange to be at a ward hint hint. It was kind of our neighbor to invite us. You know those kids of mine would never have attended without me.  Yet I attended without Steve. I was forced to overcome it (by choice). Took a bit of strength and I am tired but I walked the road and it was lit with wisdom and courage. I am a tenacious old bird. Felt like a hawk the way I had kept my eye on my children.

It really is in the heart of the matter. Strange how many years I was terrified of any involvement. I loved the sweet costumes but not the others. One mom sounded like us. She stayed home on the actual eve not wanting to participate. Funny different religion (faith) yet like minded in that. We all have much more in common folks than divisive religion or legalism might lead us to believe.

love a common base that is so under assault through the very thing we think is right.

Inherited Common variable immunodeficiency (CVID) fifth infution

Hard to keep count on how many now but it has changed my life.
It is a good gift of life. I am so grateful for the gift of life given by doaners.
With this gratitude comes a multiple bag of emote.
Sometimes I feel sad that this is the way of my future, but I have a future. A hope and a promise.

It is getting easier. Now it has been said to me in a comment that I have made too big a deal of this experience. It has gotten so much easier every infusion.
It is becoming less of 'a big deal', but it is still a process that is healing with mixed emote.
Gratitude is foremost, honestly I am also sad.

The reports came back on my sister. She does not have it. Bless God! He has blessed her.

Clean hands

Through out my days it has been my desire to have Clean hands and a pure heart. Now many things will come toward us that will muddy up our hands and do everything against our heart staying pure.  I want to be blessed. Blessed is the man with a clean heart.
No blood shed, no wounds to the hearts of others that might leave my hands soiled as it were with innocence defiled. The worst thing about this life is when good men and women do nothing. That is when evil will flourish.  Have you ever noticed however how hard it can be to kick against that wall.
Well here for a season my foot just got too dog gone sore to kick at that old wall in my way. I did my best to side step it with a 'it is not on my hands' kind of mentality just so as to not have a broken foot.

There is a real cool phrase I have heard...

"well, how's that working for ya?"

Well it seemed to offer a bit of rest from the toes tried and tired. I noticed something though. If I did not kick against the evil than no one did. Or so it seamed. A child then got to kicking at that wall as well then he got tired. I would just say...do what you know is right. How is it said? "be an example"
The old do as I say not as I do was just not cutting it for me. So with all my strength I began to press on that wall. Now trust me it took some major opposition. Made the masses inconvenienced but eventually the effect of the wall became notice. It was changing the lives of those I hold most dear.
The time had come at hand to just out and out pulling out sledge hammer if I must and knock it down. As it seems me stepping down to make everyone comfortable caused just as much an issue. All things due in it's season of course.

Recently to my delight the hands of my family have become washed as it were.

These new ages of all things permissible does not mean that they are profitable.  The technology that surrounds us and is streamed into our lives is a wash as a flood of refuse. All the artist and film makers efforts pilfered by the masses. The software authors loss of respect and revenue is the wealth of the masses as well. All here for the savvy to exploit. We call it our right or our good fortune.

When is our good fortune ever a gain if our hands are filthy. " 'taint non of us clean of it"!

So it is our efforts to become so. The loss of all the "free" entertainment, educational information, movies and even the old shows streamed in. Unless they are acquired legally we are not of clean hands.
Of all the apparent gain it is filtered in error. Error that well can come back on our families and bite them in their character and in the lax of life. A robber in itself.
This had caused such great shame for me personally that I all but withdrew from life on the computer.
Now however the hearts are purer, hands becoming clean. It is a great expense to remove all illegal software, movie, media, and such. Yes we understand this however there are a few wonderful resources out there.
We found one that for $200 a year you can gain almost all of the varied Window's applications of software for a year. It takes great diligence to down load and restart, rebuild the computer systems. Not for the faint of heart. It does do wonders however for the pure of heart.

Reaching out with dirty hands makes one just want to keep them in your pockets. Once the hand is clean it is a joy however to extend it to another.

Like in the movie 'Wallie' we are consumed.


It took 700 years for this poor ol' robot  and the earth to see life, once they saw it freedom then began for all those folk who thought it so awesome to be feed the comfort. Most never even realized that there was life out there away from the computer monitor.  Those dog gone things started to own the folks. We are to own what we own. If it is not ours them we must return it to the rightful owners.

It has been challenging. However once the outcry of the missing media calmed down...we are now as a family going for nightly walks, eating supper together at the table again. Actually looking into each others eyes.

Oh that wall is finally coming down and not being a blind wall. Seeing life as a balence is an awesome thing.
So now my hands are clean, my heart is retuning to me. I no longer am ashamed. Shame is a gift that calls us to make a course correction. I had to stop ignoring the wall that tired my foot, divided my union and made me look like a prude to my kids. They have a respect now for us. I too have a great respect for my husband. As he now rebuilds our computers and makes right this wrong.

It was like honey drawing in the naive.

Own what you own. If you can not afford it than ask God to fill the need/want as HE sees fit. Is it a loss yep. Oh what a gain however when your hands are clean and your heart has the freedom found in purity.

Turning two old ovens into one new one.

Time stopped!
Oh yes it did. 

While redecorating the kitchen wall time dropped from the sky and hit the stove top dead on to corner of the wall clock. It shattered the control panel. After much searching the panel is not only $250+ but is not even made any more. Feeling so sheepish that I would hammer a nail in leaving the clock on the other nail so as not to have to climb up and down a ladder any more than necessary the clock fell off of the nail. Now I knew the clock had broken hands. How that thing did not break the glass I do not know. I did not even realize the stove top shattered until lunch time and the face of it looked strange. Then after looking closer at it oh I realized quite clearly what had happened. I just felt sick about it.

Knowing me as many of you do you understand how beloved this convection oven is to me.

Shattered the integrated control was spent. No way to just remove the glass.

Funny thing is that we really sorta disliked this interface from day one.

Steve searched and searched and then found the same make, year model with the back splash knobs and a touch control without the integrated glass.

I was so sick to think of the loss of my beloved stove.

When we purchased the stove the kids were little and the idea of the burners set back was ideal.

The face however when leaned against would beep or turn on.

Many a time Steve would express disdain over the design.

The other day I wished that the left front burner might be smaller. For the small burner was all the way in the back. Note the new one. The double burner was to the back right on the old one.

Old One

New One

The new one has a double burner on the left front. Perfect!

It has a center warmer, and a simmer control to make precise the temp of the right front.

The old oven had this lower element for the self cleaning feature. We never use self cleaning for household safety reasons. It is just too hot of a technique to use. The lower element was also what made the oven hard to clean. The oven racks are exactly the same! Now I have 5 of them!

The new to me oven had a badly dented handle and the door was damaged.

We simply swapped the doors!

Our old one the exact as the new to me one!  

Look at that new gasket!

It is very apparent that this oven was not used.

 The old door on the new to me oven will need cleaning but it is a real sturdy door. Steve said that the other door broke when he took it out to the garage.

Note how used my old one is the gasket is in pretty bad shape. The oven is pretty dirty too...lol

 

All of the things I did not like about my old one was on the new to me one. 

Amazing thing is that it was only $229. no tax!

So the other funny thing is that the clock on the new oven does NOT work!

The timer does for the kids however.

Now is that just the strangest thing?

All in all the time I spent tormented over the dumb mistake I made...well it turned out to really be a good thing . The old oven was very well used. The new to me one was rarely even turned on I think. 

All the parts were interchangeable and between the old and new to me one well it is all fixed up.

Here I was belittling myself for being such a princess when it looked like I was about to down grade my favorite stove/oven.

I love how well cared for this princess of the living loving king of kings is tendered.

Who knows maybe
time did stand still 
long enough for the desires of our hearts to come into place.

The heart of the home is the oven.

At least this home.

The Letter of the law

Of late the lessons being learned on the letter of the law have been very controversial. It is an amazing thing to learn in the freedom that to some may come as an offense. Some of the wonders have come through the experiences that left me appalled and even down right angry.
Now through the obedience of learning trust lies the truth. The core is the opportunity to stretch my willingness. A risk that has been and is being opened up to me.

The letter of the law refuses to let freedom come to open our lives and hearts up fully to one another. 

Usually a fear of judgment or rejection refuses the risk.

Yet far better is it to walk in this bewildering freedom. To trust in all opposition to the things that hinder our sense of decency. Sometimes however that very repulsion has to be challenged. LOVE covers a multitude of sin , I once heard this quote. I had a real hard time taking it to any other definitive other than Christ on the Cross. Yet it was the very cross that became the greatest offense to the nations.

It has been through millennium that mankind has made every effort 

not to tick God off. 

I believe that this is an excuse and a cop out in humanity not to walk in the freedom of Love.

If we LOVED as God loves us?

Even if it were just to learn to love ourselves
we would stop being afraid to 

Anger God.

I know I know that this may be misinterpreted as blasphemy. Yet if what I was really trying to convey could be heard...If we were freed from these things LOVE could prevail and the opportunity to learn through the things that offend our sensibilities would really open us up to LOVE. Understanding is the BEGINNING of knowledge. Then it is in practicing that knowledge we gain wisdom and live through it.

If we never attempt to understand because we are so afraid of Anger, rejection and loss of God loving us we will never have understanding. The chain leading up to a life more abundant broken.

An abundance found not only in things but in who we really are to God.

To our Creator we are His.

Every true parent loves the kid no matter what.

A true parent will even allow choices that they may not agree with in order to watch the child gain maturity. I see God more like that.

What is God to me?

My Parent, my security that give me the sense of self that allows me affiliation with others.

He gives me that sense of mission and the understanding how to follow that through to competency.

Do I want my children to fear me? Is that the rule?

May it never be so but that they respect me.

Trust me.

Rely on me to love no matter what.

Human sacrifice has been perform from the Inca to the modern religious terrorist.  It was that Christ however did not sacrifice himself for himself but for everyone. A big difference. It is our very core fear that we do not want to anger God that keeps us from loving and living side by side with others.
It is the very offense of liberty that creates religions.
Letters of the law...
those laws that are an interpretation of mans idea of the the "law".
It is used to rule our understanding of God.

It is and was through the Sacrifice once for all of Christ that the letter of the Law was written on mans heart. To follow and to walk with and in the presence of one that is closer than a brother or a friend. The Father I an actual Adopted heir. I do not need to fear Him.I should not need to fear others. It is the Law that seperates us form loving each other. It is that fear of God.
I would rather be ruled by Love than by fear.

2 Corinthians 3:6 Who also hath made us able ministers of the new testament; not of the letter, but of the spirit: for the letter killeth, but the spirit giveth life.

Spiritual Sunday

As the hot summer days are drawing faster again, there are many people who prefer to go the swimming pool and have their time of relaxation there. But, the customers should take some precautions about the dangers related to swimming especially when it comes to using the public swimming pools.

There are some reports by the Center for Disease Control and Protection (CDC) that swimming pools that are being used by the public are not safe. They said that the bacteria in these places are high and could be risky to one’s health. As the CDC went around for some investigations, they have reported that 1 in 8 public swimming pools hold violations on the health and safety code. Some of these pools are too dirty that could threaten the public health, while others had other problems like missing safety equipments. According to the CDC, kiddie pools have the most disinfection problems where they found some bits of fecal matters.

I took the kids swimming yesterday in a public pool , he said he felt bad when we pulled into the driveway afterward. He said he swallowed water.
In the night he awoke in a night sweat (he never wakes in the night) this morning a low fever. Later he came into the room to get me again awake and Daddy man tended him.God is here no need to "invite Him" :) we did open our thanks and praise up to him that Dash can fight it off. He asked if this meant he had to have infusions. :(
I told him Nope that fever is your good guys fighting off the bad guys. The good guys are burning up the bad guys.

Thanks for rejoicing in my life. Beauty helps me see that reflection from HIS eyes and reminds me that HE IS HERE, and to remember HE AWAITS ME

Praise HIM...always...  I am seeing the difference of praise for it or begging it of him strange to try to put into words though.

Join us for 

Spiritual Sundays 

Here

Alex did here very poignantly

John 3:16 for God so loves us

It is he who is a waiting our presence. He is here all along. Come home to where our hearts belong.
In suffering we turn our heads to the wall. Stuffing all the hurt and fear trying to be brave. It was a good touch on the shoulder that Alex gave to me to remind me to roll over and to turn my face with all of the courage I had mustered and look at HIM with my eyes. Seeing my reflection in HIS eyes reminded me of who I am. Who HE is and how He is ever present. It is I who he is inviting to stay that way...
PRESENT.
Far too easy to become removed face to the wall and suffer in a silent vigil of self mustered courage.
So he is here to tell all too, to speak the truth too, to trust the outcome from all the challenges we are blessed with. Those many trials that are more about HIM than anything we might be going through. I have known this in my mind but forgot it in my heart through becoming wherry in doing good. Wherry in the tough of the trial.
Growing up a bit more today. Turned my face from the wall as it were that I used to close my eyes in the fatigue of trials.
Now open my eye to the reality of HE IS PRESENT and I do not have to remove myself to be courageous.

HIS presence is the courage in me.

Thankful Thursday

For years and years I have been made to feel if I were crazy because illness after illness would sweep through me. Odd things that ER doctors could never figure out. Even family at times questioned if those illnesses were simply attention seeking behaviors. I have doubted and even questioned myself over the years. "is this really happening again? Why do I keep getting sick.

I have sought God and prayed for help in this and recently through a set of God consequences I found myself getting allergy shots with my Son. Now it was my sons needs that found me into the help and expertise that was necessary to  find a very rair genetic disorder. 

It was GOD!

Now after years of this I am full of hope, dignity and humility to be told I will no longer have to live with illness after illness hitting me knocking me down off my wheel.

Today the supplies came for tomorros infusion.

Am I nervous absolutely!

 This is what will be sent to me every 4 weeks.

The pump has to be mailed back every infusion.

The refrigerated item is the gamaglobulin that will transform my physical health.

This is $3600!

100% covered! This every 4 weeks!

Possibly I may get to extend the treatments out. That is my hope.

That is my prayer.

I told the driver of the transport that I was happy.

he asked me why?

I told him it was because what ever the road I may be on it will be more about those who walk it with it.

It will be the character exercised over all these years that will make or break me in this.

Though my body be tried a bit over this my heart sees my mind knows that this is God's intervention to the health of my body. 

I will live a healthy normal life now.

I will play with abandon with the children and all those who surround me will once again know me by my new name.

Tenacious, vivacious White Raven.

Humor

They sent the instructions to the pump...

IN SPANISH!

The English manual was sent via fax.

I am taking it easy today and drinking a lot of fluids. The process starts 8 am my time and will be a 6 hour project.

A neighbor has offered to watch the kids the 

WHOLE DAY!

All I have need of. Helps me to feel comforted that it will all be good.

Signs and wonders give me that peace even if my soul does waver a bit with some nerves a shakin'~~