Saturday, February 12, 2011

ivig in new port

infusion went real well. so much less drama and pain not having to poke my arms. It is so much better!
i was too dehydrated however and been with nasty head ache with the old wet noodle weak effect. Right after the infusion I had a good hour of the ol' Popeye effect. (strong man cartoon of my youth). He would eat his spinach and become invincible. Tomorrow is another day.
I am making a collage if elements of gemstones. It is so fun.
Sewing a quilt, a dress for me and one for Dove. That and all the too many tasks that accumulated at months end due to the ivig wearing off after a month with just too many stressed day with the surgery . I look forward to this next month.

I learned that it take approximately 50 units of donated blood to make up one of my gamma globulin infusions.
one person can not donate more than 2 units at a time but that is very uncommon.

now I only use the white cells yet even so...that is so amazing to me.

My nurse is so awesome! As is my little family. We had an extra child today so the house was a bit too noisy. All in all I did well. The kids were entertained with each other. Pray for this little kid she is in the dragons net. This is her safe house. I told her so today that if she ever needed a place to live we are here.
At one point she walk through the room I was in and said ' I love you Mrs. U.' It was so sweet touched me with her deep sincerity.
Well my head is propped up and so it is time to just bless ya all. Good night.

Friday, February 11, 2011

Primary Immune National Conference

Today in an icepack chilled box came the gift of life to me. It is wrought by many who were so selfless as to donate the Blood to create it. I found myself holding it up to my heart; the bag of ivig solution. A washed blend of many who together spun for me a healthy chance for life.

It has several times been pointed out to me how expensive it will be to keep me alive if we should or when we might choose to have Steve retire. Every time this falls upon my ear it stings my heart. Being able to share that pain tonight with my Beloved Sweet Husband brought me to weep. Wept I for any inference that my life be simply measured by the dollar sign. I have at times done my best to save face by responding...
'If we run out of funding I will simply stop the IVIG and pass away as God designs'.

How angry after that I became. 
That is before my eyes without anyone bringing it up.
God is our provision. Trusting HIM for my life and my death is our choice. He has NEVER failed us in that. My husband would never ever even imply such a statement to me. He knows how to guard heart. It is also for me to guard heart. Stress is a huge enemy not only to my spirit and soul but even more so to my body.  I will avoid as much of it as possible.

For today and tomorrow, I will hold that bag of gold without the guilt of any one thinking my treatment, my to expensive to keep. Or may someday be so. The many many people who donated their blood to keep me and others alive did not think so. Neither will I. I will embrace that IV bag as I would those who gave the gift of donated blood. 

This will be a new day where I will no longer feel guilty for needing IVIG.

I learned of this conference in June. Perhaps we might be able to attend. It would be good to be with like minded and learn as much as I can about all of the process of living a healthy life with a primary immune disorder. The conference will even have a lecture on the very type I have. No IgA.

IDF 2011 National Conference

It will be held here in Phoenix June 2011

Easy Online Registration Available NOW!

The 10 Warning Signs of Primary Immune Deficiency For Adults
for adults

the lower one is for kids and babies

The 10 Warning Signs of Primary Immune Deficiency

Pandora Radio

If you have not heard of this app you may want to look into it. How wonderful to have music of your venue stream over your computer for free.

Hope your all having a great day. Me... I have so many things my mind is overwhelmed.

Tomorrow is infusion day...liquid life :)

This cute table was at a curb.

friday funnies


Wednesday, February 9, 2011

field trips

We first went to the mineral musuem no photos were taken
 there however. We each had 8 kids to tend too. It was really fun. Steve had Dash and his buddies.
 My sweet son is in 4th grade. This is most likely the last year for field trips with him. Steve was able to take the morning off so we went together with the class. She only had one other parent so it was a wonderful thing for her.

 This is the historical original house of representatives.
 I just loved the old radiator. Things are just not made like this here.
 The upper gallery had all the portraits of the speaker of the house year after year.
 The kids are looking at the USS Arizona. It went down at Pearl Harbor. The start of WW2.
 These were items from the ship

At the state capital we were able to go over to see the legislative branch. The real one. No representatives were there however it was lunch time for them.

Dash's quilt

busy fingers with needle and thread. Hope everyone has a great day!

Monday, February 7, 2011

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.

Older women likewise teach the younger women...

• how to love their husbands
• 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)

Blog Archive

By Maya Angelou

'A woman's heart should be so hidden in Christ
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."
  • “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"

Click here for all crafts

e patterns My sister told me of this site

Please pray for her parents and family

Please pray for her parents and family
Amy has clicked her heals and flown to her real home. There is no place like home.

This was given to me for the third time in just a few weeks.

Zephaniah 3:17 NLT
"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."

Thank You Ross

Getting to know Me

What warm hearts you all offer

Thank you all for the kindness you have shown me with every Award. I am embraced. You Are a blessing.

Thank you Michelle

Thank you Michelle

Thank you Annette they are beautiful
Thank You Annette
Autism Awareness