Thursday, January 26, 2012

Inherited Common Variable Immunodeficiency CVID and suffering

A comment was left on my post "Inherited Common variable immunodeficiency (CVID)":

my 22 year old cousin died recently from his cvid complications, Yes I am sad for this loss but I am also confused, Why him and not me. This bit by bit dying, tumors being removed spinal surgeries, nasal procedures, and all the drugs,,,, enough is enough I wish I had the balls to end this horrific life, 



This was a no-reply comment so not being able to email you my hope is to reach out.

Not knowing if you might read this or not my heart is for you. I am so sorry for the loss of your cousin. I am so sorry for your suffering. The pains of surgeries and nasal wounds to heal. All the side effects of the drugs having challenges of personality changes that can just leave you in tears. A shell of yourself, the real you left hiding inside often in shame. It is a shame that is undeserved.

All of you who have been reading here brace yourself for truth. Yep, I suffer daily and have so for many years. Waking this morning and reading my guest note on the weight of it had a strange effect. You see although the suffering be a part of my life at times it seems it has 'become my life' 
it is life however.
I asked for life. 
 A couple of weeks before before my diagnosis standing in the shower I knew I was dying. With pneumonia and bronchitis not responding to medications. My strength slipping from me I knew that my days were numbered. For 40+years I had endured the humiliating of testing and suspicion that follow undiagnosed CVID . That was in addition to all the illness and pains. Life limited by odd issues that gave to me a cloud of hypochondria. Even those closest to me began to wonder. That was a great suffering of indignity.
CVID is all about suffering yes, it is a pain covering our soul, spirit and body.
Diagnosis is at the very least a chance to gain out of all of this lifetime of physical and emotional loss a bit of dignity.

I wish and pray for the courage to live this life. Just last night I had shared how I was tempted to feel the way my commenter had expressed. It is courage to live that I need. I am glad that the 'balls' to end it have eluded me. My shoulder is almost frozen up now and it has to be faced. Surgery is inevitable and I need the courage to face it. Then I need courage to face more physical therapy. In 2008 at the Neuro hospital they said that IF I have MS it is in its mildest form. Well now everyday getting up out of a chair often accompanied by a whimper that can slip out before I can stop it. My kids see me in pain, my kids know me in pain, but my kids know me.
Reading that statement about wishing the courage to 'end it all', helps me to remember it is courage to live through it all that I must pray for.
My total knee replacement has been so VERY painful that I even forgot how bad it was before surgery. I have to trust that my shoulder will recover surgery and my heart will meet that challenge too. This year has been new for last year was long and hard. I'll see if this painful movement issue is just Fibromylasia or perhaps a side effect of high counts. Joints get attacked with CVID and so it is.
I think of the woman of 50 who is out there young and vibrant full of activity and I admire her. What is must be like to have energy and strength. Mine was amazing for a season. Missing the ability to garden or do heavy activities without measuring and budgeting what must get done against a wish list of things that need to get done. Independence became asking a lot for help, that too takes courage.

Dear Nancy I now that 'wishing for the guts to end it all' is a thought in the mist of the suffering, I have had it or thoughts like it from time to time. I think dear lady it is the guts to live through it that we have to be begging for. This is hard and you are hurting the losses around you. My own sister died undiagnosed and that is how I came to my own diagnosis after so many years. I miss her and am angry and hurt over her suffering into her end. Grieving this condition daily faced with blows of illness and pain never lets it ease. Don't let us give in and give over into the exhaustion of it all. Perhaps being there to comfort others helps us. There is the Primary Immune Foundation to reach too as well. I have done little of reaching out but after attending the conference I felt so much less alone in it. 
I know it is hard, you understand that? Yet lets fight for the 'balls' to live through it with our dignity. CVID can not be allowed to take that away from us. I need you to fight for the courage to LIVE remember we need each other. You strengthen me by reminding me to ask for the courage to live. I thank you for that today.

I pray for my family and husband who has to help me more and watch me suffer. I pray for my friends who have lost me into the vortex. It is as though this has left me holding strings to manage and so few of them.
LIVING with CVID

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."
  • "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"

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