Thursday, May 3, 2012

CVID Not defineing who you are

It was a wonderful service last weekend. A message on not being defined by diagnosis. That can be and has been a real challenge. I think I have had 18 infusions now over the last year and a half or so. It is now more normal in my life.
Facial Masking in public here in the US is not a common sight. It provokes stares. Having a 14 year old daughter is a heart breaker seeing her concern of being embarrassed.

I am not Common Variable Hypo-Immunoglobbulin, it is what I have. This road of courage to go back out into the public with such risk of illness seems to define me. It is how I respond to it perhaps better said that is my defining moment. HOW I respond to it.

My numbers are now in the safe range for three months. YA! Yet I do have the low IgA that puts me in harms way at any air borne illness, or ingested factor. NOT who I am? It is hard to have something that puts a need of special precautions.

"the girl with the mask", will that be the descriptor?

As I begin to venture out and be out in public more it falls on ME to take care of the needs and limitations of what I HAVE. It is not who I am. Who I am or will be is the woman who takes seriously the responsibilities to keep this vessel living and thriving.

It take 800 blood donations to draw off the plasma that keeps my month of infusion available to me. That is a huge debt of gratitude. The plasma is the clear stuff that floats to the top of a vial of blood. I get a 400 mg infused every four weeks. A six hour ordeal, attended to by a nurse. At the cost of $24,000 a month! My Insurance receives as per a deal and the wright off $4000. a month. This is a huge investment into LIFE, my life.

Who am I? One who is grateful. An artist, Mother, Wife, Keeper of the home and finance. I am a vivacious soul, full of life. A gardener on hold awaiting the relief from the limits of pain.

Living life with pain, it may or may not have parts effected by the CVID. Living in pain also tries to define me. It takes me to bemoan life at times. With what courage and endurance I face it...well that is WHO I am. That is who I choose to be.

I am full of life that will not be robed me! I will find ways to press on and into the truth of WHO I am. Not letting WHAT I HAVE take ME out. One way is through eating for my blood type. I am a type O- with the RH factor. So I will avoid those things my blood can not process and eat all of the things that will benefit me most through ease of assimilation. I will learn to love Kale and those foods that love me. Supplements can look like a meal, I will look at them as a starving man glad for the sustenance. Exercise will recommence once I get this next round of injections in my joins. I will not let the pain in my arms and shoulders stop me from doing what I love any longer, yet I will respect the limits imposed as to not bring on harm to mind body or soul by provoking more pain.

I will not let the enemy of my soul, heart and life lake me out! I will not through negligence comply toward my demise.

NOW THAT IS WHO I AM!
Just needed to see myself say so.

1 comment:

Lisa in Texas = ) said...

My heart goes out to you for all you have to go through. And I am very encouraged by the courage that you show, as you deal with what lies in front of you. Continue to take care of you and realize that Satan is probably trying to use this trying time to get you down. Hold onto Jesus and allow Him to strengthen you.
God bless you as you travel along the journey of life,
Lisa :O)

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)

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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."
  • "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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Zephaniah 3:17 NLT
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