Poem:

Due to the fainting problem, I often faintin church. In fact, this has happens so often that when someone else fainted in church, it took my mother, who is a physician a few minutes to realize that I wasn't in church that day.

I fall during the lesson and find myself looking up at the ceiling.

The nave, covered with alternating stars and suns, painted lovingly in blue and gold watches over the congregation and over me.
Year after year, the stars and suns have seen so many come and go-

Some are here for brief periods,

Others will be baptized, confirmed, married, and then buried under the shadow of the painted stars.

These representations of the sky, speak an older truth,

of how God revealed his promises to Abraham and told him that his descendants would be as numerous as the stars-

the symbol of Israel, the symbol of our heritage.

And the suns with them remind us of the One true Light, who is the life of all men, of Christ.

They speak of new days, of the gospel and of our mission to witness to the Light, to Christ.

And suddenly, it seems that I am no longer staring at the stars and suns on the ceiling of the church,

I am part of the church,

just as they are and we are all called to be witnesses in the world,

just as the depictions witness the congregation.

I stumble and fall once more,

One of the witnesses looks at my form, prostrate in the narthex,

He doesn’t give it a second thought as I come to,

 Silently, he witnesses my fall, makes sure that all is well and goes on his way.

 In that moment, I know the truth, the one that is found in this place of worship,

I am just another member, another part of the church, and the peace which passes understanding envelops me.  

Though my fall is witnessed here- in this moment of weakness, I am made whole- one with the father, one with the Son, and one with the church.

I am simple one star who may flicker, but who bears witness to the light, just as the stars and sun on the painted ceiling bear witness to the congregation and to Christ.

In Memoriam

One Year Later

One year ago, on April 27, 2011, two major cities in Alabama were hit by devastating tornadoes.

Here is a slideshow of the storm that tore apart parts of Tuscaloosa and Birmingham.
http://www.wsfa.com/slideshow?widgetid=51149

Today, the weather is perfect- a balmy 80 degrees and one of those days that lets you know that spring is here and Summer is coming. It is sunny and bright. The contrast itself is striking.

This post is written in loving memory of the 64 people who died in the storms- "May light perpetual shine upon them and may they go from strength to strength in a life of service."

Excellent blog on Chronic pain

Hi All,

I am linking to an excellent blog post on education and chronic pain. Please read.
http://shaunaslifeinpain.blogspot.com/#axzz1rHaPYtwV

Go with God!

Sconesail

"Pass the Patient"

Note: The current game is due to tingling/burning sensations in extremeties after fainting.
I seem to be caught up in a game that the medical community calls "pass the patient."
The rules appear to be the same as hot potato that I played as a kid.
Here is how the typical game works:
Dr. GP- "call the neurologist, I don't want to deal with this."
Dr. P- "Call Dr.N I don't know what to do."
Dr. N's answering service- "They don't take call! go to the ER or call tomorrow.
Dr. N's nurse- "Sure he will look at your chart- in three days. Or just go to ER. I don't want to deal with this."
Dr. GP's partner- take some extra medicine and go to bed. Call Dr GP tomorrow- and then call Dr. N.
Dr ER's probable response- I don't know what to do. Just go home and follow up with your own dr next week.

Whoever gets the complicated patient loses the game. whoever takes the patient and figures out the problem wins extra points for good deeds, and cheese straws at Christmas.

I know that everyone is frustrated. I just want an answer.

Happy Easter/Pesach!
Go with God.

Computer problems

I know it looks like I have been neglecting the blog lately, but regular posts were interrupted due to computer problems and migraines.

Normal posts will resume soon.

New Records

Broken records:

52: Number of times I have fainted or fallen in a single day up until Feb.
62- Number of times I have fainted or fallen in a single day- breaking previous record.

Response from specialist at large Clinic where they supposedly specialize in treatment of syncope:
 "We have no idea. Call Dr. X."
 Dr X's response: "We have no clue, please check with Dr. Z."
 Dr. Z's response, "We have no clue, Call Dr. A, and don't call us back."

I am not sure, but I think I am really baffling the medical establishment. Now, the only thing to do is to keep searching and find ways to live with it.

Living with the fainting:
Many have said that every day is an adventure.
In my case, this is true.
For I never know what the day will bring.
If it is good, i will not fall- much.
If it is bad, I fall too much and am called a "liability"
This baffles the experts.
It baffles me.
But life must go on.
For after all, I must live. I must survive.
Surviving means being cheerful, laughing when you fall,
listening to friends make bets on how often you faint.
It means listening to first graders explain to others why you sometimes fall.
It means wondering how a six-year old can understand this disease and explain it to others, and adults, who have long ago lost all innocence, refuse to understand.
It means living in spite of the fall.
For I know one day, all shall be revealed, one day, in this world, or even in the next, I  shall be free.
But until that time, I will put my faith in God to save me, in friends and family who graciously help me, and I will get up everytime I fall.

I am also really praying that I am matched with a service dog soon.

Go with God!
Sconesail

You might have a fainting disorder if. .

You might have a fainting (Neurcardiogenic Syncope/dysautonomia) if. . ..

            -You have ever fallen 10 times in a day and still think it is a good day.

            -Your standard poodle backs away from you before you know you are going to faint so that you don’t fall on him.

            -You have ever been asked not to walk upright in a grocery store.

            -You have ever been kicked out of the cardiac gym at the hospital.

            -Your roommate carries salt packets to revive you when you faint.

            -Your pharmacy has ever told other customers, “Oh, it is SS leave her on the floor-she’ll pop up.”

            -Your mother, a physician, hears a thud in church and it takes her a minute to realize that her daughter wasn’t there.

            -Your mother, pulls out her breathing tube after surgery and starts yelling “It is just SS, DON”T CALL !! You were in another state when this happened.

            -You seriously consider buying stock in Gatorade.

            -You wear kneepads daily.

            -You have ever fallen and been told “well, at least it was graceful”

            -You sit by your father’s younger brother at all family events. (though I think this might be a case of my father still torturing his little brother.)

            -There is only one person in town who will train you.

            -First graders think the therapy dog belongs to you.

            -A first grader has ever told an adult- “It’s ok. Sometimes SS falls down.”

            -You have become a subject of conversation.

            -A friend of your parents who “never” watches MTV tells your mother about two programs where the person faints.

            -your priest has given your father an article about fainting on the way out of church.

            -Your crawling skills are excellent.

            -The best medical minds in the country have narrowed your diagnosis as “something weird.”

            -your PCP watches a video of your fainting, and then refers to it as a horror show.

            -You write lists like this.