Sunday, October 21, 2012

Patricia left a comment


 Yes dear Lady it can be very lonely. I think it hard when folks see me the week after ivig. I look so normal it is like nothing is really warranting the isolation. They can not see the risk to our lives. It took a long time to teach those around me why I insist they wash their hands. I have two kids in school yet. Each day I risk exposure. 
There is a gift to loneliness and that is to reach out as you have. I am here. Only one woman but with a heart of compassion. I have been recovering from surgery of a torn cartilage in my shoulder. Now having to go to P.T. I risk. Yet I ask if he has washed his hands and he is careful of it for. Last Friday I masked, it is so awkward to do so. Saturday was infusion day. I am stronger.
I too worked with kids, never gave birth yet adopted two. Almost dieing after both trips to Russia from becoming terribly ill.
Patricia Commiseration is good for the soul.

Patricia has left a new comment on your post "Inherited Common variable immunodeficiency (CVID)":

I'm a 58 year old woman diagnosed with CVID ten years ago. I am so interested to read the reports from my fellow CVIDers--well named, "an uncommon life."

I was an elementary special ed teacher who suffered for 18 years with undiagnosed allergies and asthma literally since my first year of college after getting pneumonia my senior year of high school. Got sicker and sicker, than finally was diagnosed with asthma and drugged appropriately and started allergy shots, which helped a lot. However, that didn't stop the near-constant sinus infections, colds turning into bronchitis, etc. that I would pick up at school from my students. I would take loads of prednisone to get breathing again and get back to work--and of course, prednisone impairs the immune system...

Finally, 12 years after my asthma diagnosis, in December of 2001, I got sick (which I did roughly every month to six weeks), but this time I did not get better. I couldn't pull out of the asthma attack and sinus/lung infection regardless of the amount of antibiotics and massive doses of prednisone and other meds I was taking. After trying to go back to work by going one day a week, then two days a week, and so on, I got to one week of working four days, and that was all--in March 2002 I relapsed and was sicker than I had been the previous December. That was my last week of work, ever. I had had my blood levels checked in the mid-90's to find them low normal. This time, my doctor checked my levels, and they confirmed the CVID.

I remember thinking, when I was first told about the IVIG, that that was the cure--just a few IV treatments, and I would be good to go. It was quite a punch in the gut when I realized that this condition is incurable.

For five years, I did the IVIG once a month, then got on a trial for subQ, which I've done now for five years, and I love it. I feel much, much better--but I am also extremely isolated. I do not go out much, don't travel at all. (Fifty miles to an acupuncture doctor is the farthest I've gone in 30 years--and she is unhappy with me because I have to cancel so often because of asthma flare-ups). I use a heavy face mask from fall to spring during rare trips out in public during flu season. I only eat in restaurants from spring to fall during off-times (dinner at 4:30, anyone?) when no one else is in the restaurant. When mosquitos are active, I must be very, very careful, as West Nile is in my area. It would take a house fire or me or my family being carried out in an ambulance to get me outside between dusk and dawn from May through October!!!

I only have regular face-to-face contact with my husband and mother, (no children--I was always too sick to even consider it) and they know enough to stay clear if they feel ill at all. I lead a very, very lonely life--but the tradeoff is that I am reasonably well (considering I take 14 meds, not counting the subQ, on a regular basis for other conditions). I have asthma flare ups often because of weather or pollen (even staying indoors...), but I've not had a serious asthma attack in six years, and have only had to use prednisone for a week or two a few times in the last few years to get me through a bad flare up.

I've done this self-imposed exile from the world willingly after being so sick for so long--but it is a very strange (uncommon?) life, very isolated. I know that some people could not afford to do this--go on disability and become a hermit. But it has been my salvation. An odd life, an uncommon life, but finally, literally, since I was 18 years old, a relatively healthy life. I'll take it. It's my only option!

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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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."

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