Tuesday, August 21, 2012

Life with Commmon Variable Immunoglobbulin Deficiency and Fibromayalgia

Hello to you Laura.

A commenter who has suffered undiagnosed left me several comments yesterday. My doc said that the estimated diagnosis time is now 15 years from onset! I had no way to contact Laura.

Sorry everyone for my lack of posts. It takes all my energy most days to just take care of my little family.

I have been enduring Fibromyalgia pain and lethargy. My numbers are good as far as the IgG. I am holding well. The last two months have had me in a holding pattern. A cellular Rhuomatoligst has confirmed that I do NOT have lupus or RA thank GOD! It is a mystery how the physical pain can grab so hard. A mystery solved in the Fibromyalgia. My nurse told me that a gynecologist she worked with said that fibro is related to endo fibers that free float in the body. At least that is the latest in research. I had several abdominal surgeris over the years ending with a total hysterectomy in 2001.

Well of late with that study it is now proven out that the shoulder impingement's are due to bone spurs. I have surgery on the left shoulder on September 7th. My arm is impinged now with a partial thickness tear along the bursal side of the disal course of the supraspinatus tendon. A common issue in aging and or overuse. My left wrist is in a bad way needing surgery as well. The difficulty in having pain that is greater than what MRI or x ray might indicate is the insulting response of an ignorant P.Assistant. I have  contact with a different hand surgeon but have been on hold until after the test to rule all the other stuff out. My hand is a wound unto itself also in need of surgical repair.

The ortho doc wanted to rule out lupus or RA. It has been over a year now with shoulders in great pains. The surgery should help, but more pain of recovery will be my lot soon. Pain can really effect a soul, this soul.  I do my best to take vitamin B's ,calcium and such.

It was a concern that perhaps the CVID was causing the generalized pain and lethargy. Fibromylagia is actually made worse with lack of sleep. Note that with both shoulders sleep is hard won with the pain. Stress is another main issue with fibro, try pain=poor sleep=stress. A wheel within a wheel. Sitting here to type is like a heavy task physically. Exercise is important, yoga has had to stop due to my shoulder. It is a feeling of being trapped at times. I take a mild muscle relaxer at bed time. That has helped with the flexing and cramping. I am suppose to start a water aerobics program with the arthritis foundation after several weeks of physical therapy training. It is all so very overwhelming. It took 14 weeks to have the two appointments with the Cellular Rhum. doc.

knee shots last thursday and for the next two thrusdays
got to set up the water p.t.
shoulder surgery on 9-7 (it was on the 30th Surgery was postponed by the doc.)
call on the rx for the infusion on 8-25
call my nurse to confirm
call the other surgeon on my wrist to keep them in the loop
Allergy shots 1-2 x wk

Take our bunny to the vet (mites)
Take our dog to the other vet (3 year rabies shot and exam)
Dash has on line school, we are trying to get him into a real good charter school
Dove is in Jr. High, special needs. Got to call her interventionist.

Life is full and days are often like a huge stream through a straw. Pain slowed me way down. Love holds me up.

Please pray for MILove her sister passed away.
her funeral is on the 30th.

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