Blessings and Curses: A year in Review

I know I have been silent here for a few weeks- there has been a lot going on- Christmas, the ongoing quest to stop the fainting and some bad migraines. As we prepare for a new year- full as all years are with both blessings and curses- I want to review blessings and curses of the past year.

-Curses
-I still fall an average of 5-10 times a day. This adds up to approximately 2,000 falls this year.
-Unfortunately, no one can figure out the reason for these attacks and I have baffled more physicians than most see in a lifetime.

Blessings:
- I have been approved for a service dog. (These dogs can detect both seizures and cardiac problems) I can't wait to get mine as I know it will increase my independence.
-Meeting new friends
-Moving out of my parent's house and in with a roommate.
-Volunteering at the elementary school. I think I have learned more about teaching in the past year just by being in a school than I ever learned when I was pursuing an education degree.
-Understanding friends and family.

The only thing to do in this situation is to remember that the good comes with the bad, and that to stay sane, I have to focus on the good.

I hope that we will get an answer to the fainting in the next year. The one certainty is that I will keep fighting.

Circular Logic

I have been trying to get the fainting and migraines figured out, or at least treated, recently. However, I am feel like everyone is just round in circles. All the doctors agree that this is "something weird".

Here is a classic example of circular logic:

Dr A: "I can't treat the fainting until we get the headaches under control."
Dr. B: "I can't treat the headaches until the fainting is under control."
Dr. C: This is just weird. I don't know what to do about it.

Dr. A's opinion +Dr. B's opinion + Dr. C's opinion= We don't know what to do, or how to treat it!

So, I am left figuring out how to live with this.

sconesail

Friends and Migraine

Friends and Migraine

There is absolutely no way that I would have survived the past 14 years of Chronic Intractable Migraine without the support of truly wonderful friends and family.  My friends have fought for me, dragged me to the ER, held me, and just been there when needed. Here are two poems about friends.

The first, describes a truly horrible ER visit where the doctors doubled the dose of Depakan and gave it, along with other medications (benedryl, phenergan, and pain medication), in a wide open IV.

 In the matter of a few minutes, I went from being fine to breathing 6 times a minute. I don’t remember much- I remember that the doctors asking JT to keep me awake. The next thing I knew I was being rushed to the ICU part of the ER. Then, I spent the weekend in the step-down Critical Care unit on oxygen. I know for a fact that if he hadn’t been there, I might not be writing this today.  He is a Marine and one of the bravest men I know and I am truly blessed to call him my friend.

Semper Fidelis

Semper Fidelis is his motto, and that of the Corps he so esteems, and in a way, that of the Church he serves. So he helps and takes her to the hospital where stronger weapons will help push the enemy back.

In the Emergency room, the Marine stands by her side as she is poked, and a line is placed.
This Maginot line is meant to give relief, but like its namesake, the enemy breaks through.
Medications are ordered and pushed into the line.
He stands by as the unthinkable happens- the medication drips too quickly.
She starts to sleep. A doctor notices and asks him to “keep her awake”.
She asks for stories and he tries to keep her attention with stories he told his children,
But he sees her slip into unconsciousness again.
Her breathing drops too quickly- ten breaths a minute, nine, seven, six.
Suddenly, doctors flood the room and push medications to reverse the damage and give oxygen.
Still, he stands by her side.
He remembers seeing comrades fight this before, and he prays, knowing she will win.
In that moment, he embodies the principles of two organizations he loves most, the Marine Corps and the Church- he remains faithful to his friend and to God.
In that moment, the Marine disappears leaving only the person of Christ, the good shepherd going after that one lost sheep,
And rejoicing when that sheep is found.

The second poem describes how a true friendship began. I was moving into the dorms at graduate school. I was low on pain medication and had a horrible migraine. There were four of us in the room. Two were so scared of me- I was crying in a chair (which is not something I do often)- and it was enough to scare two of them. Once the third person realized it was migraine, she just stepped closer, offered her hand and in that moment, we became friends. It shows that through all of this people are still capable of amazing things- and that the simplest act can lead to the most amazing things.

It was a balmy August evening.
Four students stand in a college dorm room.
From the outside, it appears to be a typical scene- students discussing a new semester, dreams of what will be, rules, or dinner, but it is nothing of the sort.
Inside, you will find a battle.
One of the students sits in a chair, weeping with despair and begging for an end to the pain in her head.
Two others stand in the far corner of the room, looking on the scene with fear.
The fourth, a quiet, somewhat shy student bridges the gap.
Like Caesar crossing the Rubicon, or the Samaritan who stopped to help, she crosses the room to help the weary screaming student.
She holds out her hand offering help.
The two students in the corner look on in surprise, their faces reveal thier shock and awe at the event.
The student in the chair calms a bit- still in pain, but no longer alone.
In that moment, a friendship was born.
In that moment, the parable of the Good Samaritan was reenacted, a prayer was answered, and I saw the face of God.
It was a balmy August evening and four students were alone in a dorm room.

It was the beginning of a beautiful friendship- we roomed together for the next three years and are still great friends today.

I have truly been blessed with wonderful friends.

Prank or fainting disorder?

Last night, my roommate and I decided to order pizza.
I answered the door when the pizza arrived and then things got interesting.
I handed him money and he tried to hand me the pizza, and suddenly I had that feeling, and knew I was going to faint/fall. The following conversation ensued.
SS "Just put it on the Sofa!"
PG: Just stands there, looking surprised, and again asked where to put the pizza.
SS. PUT IN ON THE SOFA!
SS then passes out. My roommate rushes in to see what the commotion is all about. I come to pretty quickly.
PG. "Is this some sort of fraternity/sorority rush prank?"
SS. "No, I just have a fainting disorder.
PG. Are you sure it isn't a prank?
SS. Yes.
PG. Are you ok?
SS. Yes.
He finally set the pizza on the sofa and my roommate took it to the kitchen.

End scene.

In three years, of constant falling, I have been called many things- a liability, a weevil (as in "weevils wobble but they don't fall down,") and a host of other things. But I haven't been accused of fainting for a prank. Ok, so I did take out a display at Rite Aid once, but everyone there knows me and we just laughed it off- though the staff occasionally teases me about it. But 8 years after I graduated from college, I am finally considered "cool" enough to be part of a sorority! (I was a member of the GDI at college.)

Sometimes, all you can do is laugh!

14 Years

Fourteen years ago, on October 28, 1997, my life changed forever. I remember it vividly- the day when this headache began.

It was a beautiful fall day and I was on the field hockey field and suddenly, the other players turned into purple spots. I motioned to the coach that I needed to get off the field and I did. I went straight to the nurse's office to get some of my migraine medicine. I didn't think much of it at the time. I had had migraines before- usually lasting a couple of days to eight days. However, this one was different, this one didn't go away. This one changed my life forever.

Over the course of the past fourteen years,
I have tried many medications.
Seen numerous doctors and specialists
had an occipital nerve stimulator placed
and have done my best to live with it.

I have also learned a great deal-
true friends stick with you no matter what
faith is necessary for me to survive
I have seen incredible compassion
I have seen the best and worst of people.

I truly hope thatt the migraines will go away, but if they don't I will continue to fight it, continue to do things in spite of it and hope for a cure.

Time for a good Joke

I found this report to be particularly amusing. Enjoy. Regular programming will resume next week.

Search Committee Report:
The following is a confidential report on several candidates being considered for our new Pastor.

Adam: Good man but problems with his wife. Also one reference told of how his wife and he enjoy walking nude in the woods.

Noah: Former pastorate of 120 years with not even one convert. Prone to unrealistic building projects.

Abraham: Though the references reported wife-swapping, the facts seem to show he never slept with another man’s wife, but did offer to share his own wife with another man.

Joseph: A big thinker, but a braggart, believes in dream-interpreting, and has a prison record.

Moses: A modest and meek man, but poor communicator, even stuttering at times. Sometimes blows his stack and acts rashly. Some say he left an earlier church over a murder charge.

David: The most promising leader of all until we discovered the affair he had with his neighbor’s wife.

Solomon: Great preacher but our relocation costs for all his wives are out of our budget.

Elijah: Prone to depression. Collapses under pressure.

Elisha: Reported to have lived with a single widow while at his former church.

Hosea: A tender and loving pastor but our people could never handle his wife’s occupation.

Deborah: Strong leader and seems to be anointed, but she is female.

Jeremiah: Emotionally unstable, alarmist, negative, always lamenting things, reported to have taken a long trip to bury his underwear on the bank of a foreign river.

Isaiah: On the fringe? Claims to have seen angels in church. Has trouble with his language.

Jonah: Refused God’s call into ministry until he was forced to obey by getting swallowed up by a great fish. He told us the fish later spit him out on the shore near here. We hung up.

Amos: Too backward and unpolished. With some seminary training he might have promise, but has a hang-up against wealthy people–might fit in better in a poor congregation.

Melchizedek: Great credentials at current work place, but where does this guy come from? No information on his resume about former work records. Every line about parents was left blank and he refused to supply a birth date.

John: Says he is a Baptist, but definitely doesn’t dress like one. Has slept in the outdoors for months on end, has a weird diet, and provokes denominational leaders.

Peter: Too blue collar. Has a bad temper-even has been known to curse. Had a big run-in with Paul in Antioch. Aggressive, but a loose cannon.

Paul: Powerful CEO type leader and fascinating preacher. However, short on tact, unforgiving with younger ministers, harsh and has been known to preach all night.

James & John: Package deal preacher & associate seemed good at first, but found out they have an ego problem regarding other fellow workers and seating positions. Threatened an entire town after an insult. Also known to try to discourage workers who didn’t follow along with them.

Timothy: Too young!

Methuselah: Too old . . . WAY too old!

Jesus: Has had popular times, but once his church grew to 5000 he managed to offend them all, and then this church dwindled down to twelve people. Seldom stays in one place very long. And, of course, he’s single.

Judas: His references are solid. A steady plodder. Conservative. Good connections. Knows how to handle money. We’re inviting him to preach this Sunday. Possibilities here.

OCTOBER MIGRAINE HEADACHE BLOG CARNIVAL

Your Scariest Migraine Experiences

I chose this theme because migraines are, well, just plain scary at times. Migraines have the power to make us scream in pain, strand us in a dark room, rob us of language, make us see scary lines and shapes that others can’t see. In addition, they also have the power to scare others. (I once had two people backed in to a corner because I was crying so much due to pain.)  I have scared many people but the scariest experiences have always been my own- those of a chronic migraneur.

Migraines run in my family. My father had his first migraine as a teenager and the left side of his body went numb- he was absolutely convinced that he had polio. My grandfather, who was a physician, had to convince him that it was only a migraine. Fortunately, when I experienced my first migraine, my parents were able to tell me what was happening.

The frightening first migraines:

Many people wrote in concerning their first migraine experiences. It is true that there are very few things as terrifying as being in pain and having no clue what is happening to you or why it is happening at all. 

LRH at Travelling Chronic Pain Road in her post entitled "A frightened Little Girl."

Diana at  Somebody Heal Me writes about her terrifying first auras and migraines in her post Diana in Wonderland.

Kelly at Fly With Hope writes about her first terrifying months of migraine and migraine medication and misdiagnosis in her post “Scariest Migraine Ever: What I didn’t know.”

Migrainista writes about her first migraine in her post entitled “You always remember yourfirst.”

Losing Language: My Scariest Migraine Experience

My own scariest experience occurred when I was 18 and at boarding school. I woke up one morning and noticed that my head was feeling better- it certainly didn’t hurt as much as usual- but I was having trouble speaking. I couldn’t think of what I wanted to say or if I could find the word and managed to say it- my speech was horribly slurred. I went up to the infirmary and wrote out a note asking for aspirin. The nurse gave me some and I went back to class. But another student came to get me about ten minutes later and told me to back to the infirmary. The nurse had called my neurologist who said to head to the ER at Hopkins immediately. One of the school nurses took me to the ER, however, almost as soon as I was in a room, the nurse said “she had a cold, and that she would leave me there and pick me up later.” At that point, I did start to get scared- I found myself alone in a hospital, far away from home, unable to communicate well.

My neurologist’s partner came down almost immediately and examined me. Neurologically, I appeared to be ok. But then I heard her on the phone asking me to nod my head if I could lie still for an hour. I nodded realizing exactly what test she asking about- an MRI. I was still having trouble speaking. I  found  myself suddenly surrounded by neurology residents/interns all asking me to “Speak”. Several resorted to bribery, “Speak, honey, speak, we will give you a cookie!” So I spoke and yes, I got a cookie. (I was at a Children's Hospital.) Word had gotten out that there was a “weird case in room five.” So there were quite a few people in and out of my room and I struggled to speak. Eventually it improved some.

Later, I had an MRI with and without contrast. I remember being rolled across the hospital to the radiology department late in the day. When I returned to the ER after the MRI I remember the attending telling me that “Your mother is on her way here.” I said, “No, my mother is at home.” The attending finally spelled it out “No, your mother is on  a plane on her way here.” Shortly after that, I was discharged from the ER and went back to school. My mother arrived later that night.

I didn’t know it at the time, but the school had called my parents and told them that their 18 year old was having a stroke. My father said “It is probably just the migraine.” He was right. After a good night’s sleep, I felt somewhat better- I could speak, but the pain was back. 

For me the most terrifying part of the whole thing was being unable to communicate to others exactly what was happening to me. I was diagnosed with migrainous aphasia- the inability to find words and get them out during a migraine. I have struggled with this on and off since then, and I have scared others, but for me the first experience was the most frightening.

Thanks to all who particpated for their wonderful submissions! I wish everyone as many pain/ migraine free days as possibile.

Sconesail

Migraine and Blog Carnival Call for submissions!

The October edition of the Migraine and Headache Blog Carnival is coming to Falling through Pain! The theme will be "Your scariest migraine experience-ever!"

Please send all submissions to somebodyhealme@dianalee.net. Submissions are due by midnight on Friday and will be posted on Tuesday.

I look forward to reading your stories.

sconesail

Moving

I realize that I haven't been posting as much lately. There has just been a lot going on in my life- most of it good. I have been in the middle of moving, adjusting to more independence, and dealing with the post-move migraine.

I also want to remind you that I am hosting the October edition of the Migraine and Headache Blog Carnival. The topic is "What is the scariest migraine experience you have had or even witnessed?' Please email all submissions to somebodyhealme@dianalee.net by midnight on Oct. 7.

I look forward to reading them.

September Migraine and Headaache Blog Carnival

The September edition of the Migraine and Headache Blog Carnival is up at Somebody Heal Me! Follow the link below to read and enjoy!
http://somebodyhealme.dianalee.net/2011/09/building-resiliency-september-2011.html

I will be hosting the next Migraine and Headache Blog Carnival. The theme will be What is your scariest migraine experience? The blog will be posted on October 10. Submissions are due by midnight on Oct 7. All submissions should be emailed to Diana at Somebody Heal me. Her email address is somebodyhealme@dianalee.net.

I look forward to reading and hosting the carnival.

Elegy for Jeff

This poem is written in memory of my dear friend, Jeff, survivor of 9/11 (the last man out of the first tower), father, fighter, and excellent friend. This is also for his dear son, Jack, whom he loved more than life. He did not die on 9/11, but the dust and jet fuel he breathed did not make the RSD in his chest easier to bear.

Requiem

You did not die on that fateful day,

But, it was burned into you, just as the scenes of that horrible day are burned into the minds of the nation and the world.
You were lucky- you came out from the flames that day.
And in the next eight years, you did some amazing things-
You had a son, so that your legacy might live on,
You worked your heart out.
You fought the horrific war with pain and always smiled.
Though, you were bound to a wheelchair for a while, you got up and walked.
When I saw you walk that first day- I knew for certain that I had witnessed a miracle.
You found love and friends and life again.
Unfortunately, you, who shone so brightly here on earth, were called to serve the one who made you, that you might shine brighter there, in that place where there is no more pain, where you can walk without fear, run and not be weary, and find the peace you were seeking.
The truth of the matter is, I miss you, Jeff, and I love you.
You were one of the lucky ones that fateful September morning,
But those events took a toll on you and you paid a heavy price in pain.
But I know that you are up there- watching over your old friends-  Liz, Kristy, Curt, Jack, and me- and I know that one bright, golden day, we will meet again.

Favorite Poems

This is actually one of my favorite hymns/poems. Enjoy.

1. I would be true, for there are those who trust me;
   I would be pure, for there are those who care;
   I would be strong, for there is much to suffer;
   I would be brave, for there is much to dare.
2. I would be friend of all—the foe, the friendless;
   I would be giving, and forget the gift;
   I would be humble, for I know my weakness;
   I would look up, and laugh, and love, and lift.
3. I would be faithful through each passing moment;
   I would be constantly in touch with God;
   I would be strong to follow where He leads me;
   I would have faith to keep the path Christ trod.
4. Who is so low that I am not his brother?
   Who is so high that I’ve no path to him?
   Who is so poor I may not feel his hunger?
   Who is so rich I may not pity him?
5. Who is so hurt I may not know his heartache?
   Who sings for joy my heart may never share?
   Who in God’s heav’n has passed beyond my vision?
   Who to hell’s depths where I may never fare?
6. May none, then, call on me for understanding,
   May none, then, turn to me for help in pain,
   And drain alone his bitter cup of sorrow,
   Or find he knocks upon my heart in vain.

Fighting through rough times- more coping skills

The past week has been exceptionally rough, well really horrific, on the migraine and fainting fronts. No sooner do I get up, than I am falling through space again. It is extremely frustrating and exhausting. But, I will survive. I know I have written on coping mechanisms before- but here are a few more that have helped me though this week.


1. Movies- preferably some form of historical violence or just a good series.
2. Books- sci-fi/ fantasy and thrillers have kept me sane when I have been unable to sleep.
3. Friends- especially the ones who are willing to listen to you and, if they have to, threaten to drag you out of your cocoon and get you to do something or simply commiserate in plans.
4. Throwing myself into a new project. I am moving in a few weeks- I think this will be a very good thing- and let's face it, retail therapy is sometimes cheaper than the ER or pharmacy.
5. Faith- basically living on a wing and a prayer here and hoping to come out on top.

I think that is all for now.

On Fear

I have seen it more times than I can count-

that look of fear deep in your eyes as you witness another fall.
I have seen it in the eyes of friends and strangers,
And because of this, my first thought upon coming to, no matter how scared I am is to show the world I am alright, even when I am not.
The problem is that I am scared too- I am afraid that one day, I will not bounce back quickly enough to calm the others, that I will cry and the world will know just how hard it is to maintain this façade. I am afraid that one day, something other than my pride could be lost to a disease that doctors are refusing to understand- one that is not normal, one for which there is no textbook..
I fall through space again, and come too on the hard concrete of the driveway, and there I see the fear where I have never seen it before- in the eyes of my father- a man of medicine, a man of science, a man who desperately wants to take this from his child, but can’t.
Then I remember something- that the only way to conquer fear is to live with it. And in the silence I remember all the words that give me comfort and I gaze upon a cross and know that the man who conquered death itself and gives us new life will be with me until this ends and until answer is found, will give me hope and strength and suddenly, I am no longer alone.

August Headache and Migraine Blog Carnival

The August Headache and Migraine Blog Carnival is up at Migraine and Headache Disorders blog. Follow the link and check it out!
http://www.migraineandheadacheblog.com/2011/08/august-2011-headache-and-migraine-disease-blog-carnival-favorite-post-of-the-month.html#tpe-action-posted-6a00d8341ce97953ef01539086f258970b

Happy Reading to ALL.

Trench warfare?

Here I am again- standing on this battlefield that is my life.

Trying to run from one trench to another, to reach safety and hold back the relentless and merciless enemy.

I stand- paralyzed with pain and fear-between two trenches.

I feel the pain explode like a shell and stand as the force of it attempts to fell me.

My heart races and I fall into the darkness. .

I come to on the ground and crawl to the trench, where it is slightly safer.

This battle has no grand name; no treaties will be signed to end the war.

No heroic songs will be sung for the soldiers here.

For this field is unlike any other- this field is a body and this is the battle between pain and darkness, between pain and fainting.

I touch the cross in my pocket and know that I will be at peace one day. One blessed day this field shall turn from red to green and all shall be made right in God. 

St. Crispin's Day Speech

October 25, 1413- Agincourt, France
The British and French armies meet for battle in one of the most decisive battles of the Hundred Years War. In four hours, the flower of French knighthood is decimated by the yeoman archers of England, led by Henry V. This speech from Shakespeare's play Henry V immortalizes the battle and has always given me just as much courage as it can. Enjoy!

WESTMORELAND

O that we now had here
But one ten thousand of those men in England
That do no work to-day!

KING HENRY V

What's he that wishes so?
My cousin Westmoreland? No, my fair cousin:
If we are mark'd to die, we are enow
To do our country loss; and if to live,
The fewer men, the greater share of honour.
God's will! I pray thee, wish not one man more.
By Jove, I am not covetous for gold,
Nor care I who doth feed upon my cost;
It yearns me not if men my garments wear;
Such outward things dwell not in my desires:
But if it be a sin to covet honour,
I am the most offending soul alive.
No, faith, my coz, wish not a man from England:
God's peace! I would not lose so great an honour
As one man more, methinks, would share from me
For the best hope I have. O, do not wish one more!
Rather proclaim it, Westmoreland, through my host,
That he which hath no stomach to this fight,
Let him depart; his passport shall be made
And crowns for convoy put into his purse:
We would not die in that man's company
That fears his fellowship to die with us.
This day is called the feast of Crispian:
He that outlives this day, and comes safe home,
Will stand a tip-toe when the day is named,
And rouse him at the name of Crispian.
He that shall live this day, and see old age,
Will yearly on the vigil feast his neighbours,
And say 'To-morrow is Saint Crispian:'
Then will he strip his sleeve and show his scars.
And say 'These wounds I had on Crispin's day.'
Old men forget: yet all shall be forgot,
But he'll remember with advantages
What feats he did that day: then shall our names.
Familiar in his mouth as household words
Harry the king, Bedford and Exeter,
Warwick and Talbot, Salisbury and Gloucester,
Be in their flowing cups freshly remember'd.
This story shall the good man teach his son;
And Crispin Crispian shall ne'er go by,
From this day to the ending of the world,
But we in it shall be remember'd;
We few, we happy few, we band of brothers;
For he to-day that sheds his blood with me
Shall be my brother; be he ne'er so vile,
This day shall gentle his condition:
And gentlemen in England now a-bed
Shall think themselves accursed they were not here,
And hold their manhoods cheap whiles any speaks
That fought with us upon Saint Crispin's day.

from http://shakespeare.mit.edu/henryv/henryv.4.3.html

Poem: Somewhere

Somewhere

Somewhere there is a child on a field of green who feels the pain in her head

And doesn’t know that her entire life has changed in an instant.

Somewhere there is a teenager scared in an Emergency Room who has lost the ability to speak and is scared because it this disease has taken what she loves most. Language,

Somewhere a mother receives a call telling her that he 18 year old has had a stroke,

Her eyes glow wide with relief, when she finds out it is simply the disease.

Somewhere there is a teenager nicknamed “Advil” in the yearbook,

With the strength to smile and wear it as a badge of honor given by friends

Somewhere a student is explaining to a professor that this disease has the ability to take her away from class and strand her in a dark room

In a crowded dorm room, the same student is dictating a note to a friend telling them that once again the disease has robbed her of language

Somewhere her friends are taking her to the ER, kicking and screaming, willing to fight for her, a battle she cannot fight herself

Somewhere she feels the touch of God in a cold chapel and knows what she must do and so she goes forth, denying herself, taking her cross and following the one who called her.

She feels the defeat of losing the fight, of losing a job, and crying for it.

Still, the letter comes and she follows to seminary.

Somewhere she meets a Marine who will guide her and four others, the man who will draw a military plan, and walk through fire to make sure she is ok.

In a hospital room, she struggles to breathe as the medicine drips too quickly into her veins and the marine sits by her side and knows she will triumph.

A professor walks in and asks the most terrifying question she has ever heard “How did it feel to be that close to death?” She answers with a jibe and lives to tell the tale.

She sits on the couch crying because she can’t spend time with her mother or her friends.

She dreams of love, life, and fights for both, she wants to help anyone she can and she does.

Somewhere a phone rings and a friend will talk her down through hell, and tell her that she is worthy and wonderful, though she does not know it herself.

Somewhere a mother sits on a couch watching her children play quietly because Mom hurts, but they love her and will learn to live with her strength and power and intellect.

And the child on the field sits in the bleachers hoping the pain will leave her and her mother tells her she will be ok.

Poem- "God will provide"

“God will provide,” said a man of great faith-

“Do not worry, my child, He will provide.”

However, in this world of strife and sickness,

These words too often ring hollow-

Plans go awry, a dream of my future dies,

I am writhing in agony or inexplicably falling through space.

And all the while, I try to believe these words, for I know they are true.

As I fall to the floor once more, terrifying those who look upon me,

Scaring even those whom I hold most dear, I remember the words.

And suddenly, I understand, like Jacob struggling with the angel, I limp away.

And in the clear moment, I realize something, these words are true.

God does provide- not in the way I want him too- not in great miracles,

But, in the small voice of quietness, he speaks.

And as I listen, I learn.

God has provided, in a thousand little ways,

He has given me a loving family.

He has given me wonderful friends, whose mere presence makes life better,

Yes, a dream and a career were cut short through illness,

Yes, I fall a thousand times, but in all of them,I have been lucky.

And in the joy and struggles of this world,

I remember the one who taught me this, who made me, who knows me,

And who will provide.

And even if I fall again, I will fall into the arms of friends

Or, on one glorious day, I will fall into the arms of angels, to a place

Where these maladies are healed, where I can walk and not faint,

And he provided all. 

Coping mechanisms

There are many ways to cope with migraine and dysautomia/Neurocardiogenic syncope. I often get asked "How do you do it? How do you stay sane with these things?" So, I thought I would attempt to answer this question. Here is a list of my various coping mechanisms:

Reading- I am an escapist reader. I basically go into a different world while reading and it proves to be a great distraction. Mysteries, sci-fi/fantasy, and novels all help me to survive.

Friends- I have a great circle of friends and all of them are just as warped and wonderful as I am. I also take great comfort in the fact that I can call any of my good friends, at any time, and know that they understand.

The internet- I do not know what I would do without the various forums for migraine, email, and blogs to keep me sane.

Movies/ tv shows- also a good way of escaping.

Writing- as you have probably guessed, I deal with many of my problems by writing about them.

Max- I do not know what i would do without my favorite canine companion. Dogs just make things better.

Faith

Family

Positive attitude- yes, I may be on the floor, my headache can be a 9 on the pain scale, but apart from that, I am absolutely fine.

These are just a few ways of dealing with these two horrible diseases.

Declation of Independe- why we celebrate the Fourth

Normal progamming will resume tomorrow. Right now, I will take a brief moment to honor those who wrote and signed the Declatation of Independence and made this great nation what it is today.

The Declaration of Indepence was written by Thomas Jefferson in just two weeks. This small document would change the world as we know it forever. Here is a Transcript of the declaration.

IN CONGRESS, July 4, 1776.

The unanimous Declaration of the thirteen united States of America,

When in the Course of human events, it becomes necessary for one people to dissolve the political bands which have connected them with another, and to assume among the powers of the earth, the separate and equal station to which the Laws of Nature and of Nature's God entitle them, a decent respect to the opinions of mankind requires that they should declare the causes which impel them to the separation.

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.--That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed, --That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness. Prudence, indeed, will dictate that Governments long established should not be changed for light and transient causes; and accordingly all experience hath shewn, that mankind are more disposed to suffer, while evils are sufferable, than to right themselves by abolishing the forms to which they are accustomed. But when a long train of abuses and usurpations, pursuing invariably the same Object evinces a design to reduce them under absolute Despotism, it is their right, it is their duty, to throw off such Government, and to provide new Guards for their future security.--Such has been the patient sufferance of these Colonies; and such is now the necessity which constrains them to alter their former Systems of Government. The history of the present King of Great Britain is a history of repeated injuries and usurpations, all having in direct object the establishment of an absolute Tyranny over these States. To prove this, let Facts be submitted to a candid world.

He has refused his Assent to Laws, the most wholesome and necessary for the public good.
He has forbidden his Governors to pass Laws of immediate and pressing importance, unless suspended in their operation till his Assent should be obtained; and when so suspended, he has utterly neglected to attend to them.
He has refused to pass other Laws for the accommodation of large districts of people, unless those people would relinquish the right of Representation in the Legislature, a right inestimable to them and formidable to tyrants only.
He has called together legislative bodies at places unusual, uncomfortable, and distant from the depository of their public Records, for the sole purpose of fatiguing them into compliance with his measures.
He has dissolved Representative Houses repeatedly, for opposing with manly firmness his invasions on the rights of the people.
He has refused for a long time, after such dissolutions, to cause others to be elected; whereby the Legislative powers, incapable of Annihilation, have returned to the People at large for their exercise; the State remaining in the mean time exposed to all the dangers of invasion from without, and convulsions within.
He has endeavoured to prevent the population of these States; for that purpose obstructing the Laws for Naturalization of Foreigners; refusing to pass others to encourage their migrations hither, and raising the conditions of new Appropriations of Lands.
He has obstructed the Administration of Justice, by refusing his Assent to Laws for establishing Judiciary powers.
He has made Judges dependent on his Will alone, for the tenure of their offices, and the amount and payment of their salaries.
He has erected a multitude of New Offices, and sent hither swarms of Officers to harrass our people, and eat out their substance.
He has kept among us, in times of peace, Standing Armies without the Consent of our legislatures.
He has affected to render the Military independent of and superior to the Civil power.
He has combined with others to subject us to a jurisdiction foreign to our constitution, and unacknowledged by our laws; giving his Assent to their Acts of pretended Legislation:
For Quartering large bodies of armed troops among us:
For protecting them, by a mock Trial, from punishment for any Murders which they should commit on the Inhabitants of these States:
For cutting off our Trade with all parts of the world:
For imposing Taxes on us without our Consent:
For depriving us in many cases, of the benefits of Trial by Jury:
For transporting us beyond Seas to be tried for pretended offences
For abolishing the free System of English Laws in a neighbouring Province, establishing therein an Arbitrary government, and enlarging its Boundaries so as to render it at once an example and fit instrument for introducing the same absolute rule into these Colonies:
For taking away our Charters, abolishing our most valuable Laws, and altering fundamentally the Forms of our Governments:
For suspending our own Legislatures, and declaring themselves invested with power to legislate for us in all cases whatsoever.
He has abdicated Government here, by declaring us out of his Protection and waging War against us.
He has plundered our seas, ravaged our Coasts, burnt our towns, and destroyed the lives of our people.
He is at this time transporting large Armies of foreign Mercenaries to compleat the works of death, desolation and tyranny, already begun with circumstances of Cruelty & perfidy scarcely paralleled in the most barbarous ages, and totally unworthy the Head of a civilized nation.
He has constrained our fellow Citizens taken Captive on the high Seas to bear Arms against their Country, to become the executioners of their friends and Brethren, or to fall themselves by their Hands.
He has excited domestic insurrections amongst us, and has endeavoured to bring on the inhabitants of our frontiers, the merciless Indian Savages, whose known rule of warfare, is an undistinguished destruction of all ages, sexes and conditions.

In every stage of these Oppressions We have Petitioned for Redress in the most humble terms: Our repeated Petitions have been answered only by repeated injury. A Prince whose character is thus marked by every act which may define a Tyrant, is unfit to be the ruler of a free people.

Nor have We been wanting in attentions to our Brittish brethren. We have warned them from time to time of attempts by their legislature to extend an unwarrantable jurisdiction over us. We have reminded them of the circumstances of our emigration and settlement here. We have appealed to their native justice and magnanimity, and we have conjured them by the ties of our common kindred to disavow these usurpations, which, would inevitably interrupt our connections and correspondence. They too have been deaf to the voice of justice and of consanguinity. We must, therefore, acquiesce in the necessity, which denounces our Separation, and hold them, as we hold the rest of mankind, Enemies in War, in Peace Friends.

We, therefore, the Representatives of the united States of America, in General Congress, Assembled, appealing to the Supreme Judge of the world for the rectitude of our intentions, do, in the Name, and by Authority of the good People of these Colonies, solemnly publish and declare, That these United Colonies are, and of Right ought to be Free and Independent States; that they are Absolved from all Allegiance to the British Crown, and that all political connection between them and the State of Great Britain, is and ought to be totally dissolved; and that as Free and Independent States, they have full Power to levy War, conclude Peace, contract Alliances, establish Commerce, and to do all other Acts and Things which Independent States may of right do. And for the support of this Declaration, with a firm reliance on the protection of divine Providence, we mutually pledge to each other our Lives, our Fortunes and our sacred Honor.

Information from : http://www.archives.gov/exhibits/charters/declaration_transcript.html

It was signed by representatives of all thriteen colonies. It was adopted by Congess on July 4, 1776.

Fifty Years later on July 4, 1826, Jefferson died. His last words were "Adams lives" John Adams dies later the same day. 

Information from: http://en.wikipedia.org/wiki/Thomas_Jefferson

Jefferson wrote his own epitaph and refused to have any word of it changed. It does not mention his presidency, the Lousiana Purchase, or other accomplishments. It reads as follows:

Here was buried Thomas Jefferson Author of the Declaration of American Independence Of the Statute of Virginia for religious freedom & Father of the University of Virginia.

April 13, 1743 – July 4, 1826

Information from:http://www.famousquotes.me.uk/epitaphs/3.htm

Our founding fathers gave us a great many things- George Washington won the Revolutionary War, defeating Cornwallis at York Town. The Constition. and the ability to stand up and fight for our rights when the need arose. So when you are celebrating today, and enjoying freedom remember those who first shook off Colonial Rule and formed a unique and wonderful nation.

HAPPY FOURTH OF JULY!!!

A Mother's Love

A Mother’s Love

It is a law of nature that few forces on this earth are as powerful as the love of a mother for her child.

It doesn’t matter how old the child is- the child can be an infant, taking his first breath, a four year old who needs to be held, a teenager who needs her mother in times of sickness.

And, yes, even older- even forty or fifty.

And it is said that mothers will do incredible, impossible things to help their children-

They will walk through fire, think nothing of getting on a plane, do all in their power.

I recently witnessed this power in my own mother, though it was not directed at me,

But at her oldest and first born son. She told me she would not have done this surgery, or gone through this much pain if it hadn’t been for the fact that she felt the need to help this adult, who is still her child and is still her child fighting a disease he won’t acknowledge.

But despite that, she will help him still.

And in that moment, I knew- I knew that my mother had done the same for me.

 I learned that neither heaven or hell or any actions could ever remove this love.

No matter what we do, she loves us.

Even when she shouldn’t, even though others give up, she loves us.

In that one moment, I knew one thing for sure- we will be ok.

And I prayed that my brother will come to realize how fortunate he is.

Favorite Poems

Things have been a little crazy in my life lately- well more than usual. At times, I find myself remembering poems- two in particular have been running through my head lately, so I thought I would share them with you.

Holy Sonnet XIV by John Donne

Batter my heart, three-person'd God ; for you
As yet but knock ; breathe, shine, and seek to mend ;
That I may rise, and stand, o'erthrow me, and bend
Your force, to break, blow, burn, and make me new.
I, like an usurp'd town, to another due,
Labour to admit you, but O, to no end.
Reason, your viceroy in me, me should defend,
But is captived, and proves weak or untrue.
Yet dearly I love you, and would be loved fain,
But am betroth'd unto your enemy ;
Divorce me, untie, or break that knot again,
Take me to you, imprison me, for I,
Except you enthrall me, never shall be free,
Nor ever chaste, except you ravish me. 

From http://www.luminarium.org/sevenlit/donne/sonnet14.php

The other poem is by Rudyard Kipling. Different time period, but for some reason both poems seem to give me comfort that it is hard to find elsewhere.

IF by Rudyard Kipling

If you can keep your head when all about you Are losing theirs and blaming it on you; If you can trust yourself when all men doubt you, But make allowance for their doubting too; If you can wait and not be tired by waiting, Or, being lied about, don't deal in lies, Or, being hated, don't give way to hating, And yet don't look too good, nor talk too wise; If you can dream - and not make dreams your master; If you can think - and not make thoughts your aim; If you can meet with triumph and disaster And treat those two imposters just the same; If you can bear to hear the truth you've spoken Twisted by knaves to make a trap for fools, Or watch the things you gave your life to broken, And stoop and build 'em up with wornout tools; If you can make one heap of all your winnings And risk it on one turn of pitch-and-toss, And lose, and start again at your beginnings And never breath a word about your loss; If you can force your heart and nerve and sinew To serve your turn long after they are gone, And so hold on when there is nothing in you Except the Will which says to them: "Hold on"; If you can talk with crowds and keep your virtue, Or walk with kings - nor lose the common touch; If neither foes nor loving friends can hurt you; If all men count with you, but none too much; If you can fill the unforgiving minute With sixty seconds' worth of distance run - Yours is the Earth and everything that's in it, And - which is more - you'll be a Man my son!  From:http://www.everypoet.com/archive/poetry/Rudyard_Kipling/kipling_if.htm

Headache and Migraine Blog Carnival

The June edition of the Headache and Migraine Blog Carnival is up at http://somebodyhealme.dianalee.net/. Read, learn, enjoy!

Poem: Losing a battle

I am losing the battle.

I try to stand and fight, but I fall again.

The enemy comes closer- I can feel the heat of his fiery breath.

Slowly he advances as I scramble for a weapon,

But there are no weapons near by- my sword is broken

And all the potions that keep this enemy at bay are scattered on the sand

I can do nothing except try to stand and face the enemy.

But I fall again, and again, and again,

I fear that all is lost- he is closing in for the kill

And for a moment, I want to surrender to it- to stop this pain, to sleep, to lay down my arms and rest at last, but I can’t.

I see something glimmer in the sand- buried, but within reach.

I it out and find the golden sign that conquers all.

I am able to stand again. I hit the foe. He backs down for now.

But this battle is not over. It will never end. I only know that, with the sign,

With that great sign that conquers all, just as Constantine did at Milvian Bridge, I will prevail. 

Hiding

Hiding

You would never know it to look at her-

There are no outward signs of the torment raging inside her,

The torment behind the mask she is told she must wear.

Indeed, she has worn it so long that it is now a part of her.

So now, with ease, she smiles when she is in pain, laughs when she faints, downplays the horrible torment that she fights daily.

But now, the mask is beginning to crack.

She is tired of faking it- tired of playing this part.

“I wonder,” she asks, “what others would do if they knew what lies beneath the mask?”

The war against pain, against fainting rages, trying to consume her.

And every victory is costly and paid for with tears and pain.

She is weary, tired, and wants to take off the mask- just for a while, just so others can see and she can take a breath.

But others tell her- “no, you must leave the mask on- perk up, and play the part of the happy young woman, the helpful volunteer, the dutiful daughter.”

But they don’t realize that the war inside her is causing the mask to break- and there are choices that have to be made now.

Should she leave the mask on, despite the fact that it will drain her of more precious energy? Should she abide by what society tells her is right- “don’t show it”

Should she take it off and finally surrender to the fight?

Or does she simply keep fighting, forgetting the mask, using it only when needed?

And when she does fight, she removes the mask, adds it to her arsenal, and then she can show the world her true face- war weary, but never surrendering, she will fight to the end and she will win, and on one bright, glorious day, she will stand victorious, with the mask broken at her feet.

A weary soldier

Here I am again fighting this battle once again.

Standing on the field, I fight the twin armies of migraine and dysautonomia,

And for once, I am losing ground.

I am battle weary, tired, and distraught

Every time, I beat the enemy back, it seems to fight back more

Tired, weary beyond words, I will settle for a short retreat and a rest.

I know I will not win today.

Suddenly, I am felled by the enemy, I lie on the field weary, but grateful for rest.

I lay down my arms for a minute and give into the diseases, losing myself for a time in the fray.

I crawl to a refuge that stands beneath a cross

And there I rest, and know that I may have lost this day, but with the help of that great, conquering Cross, I shall not lose the war.

I lay down my sword for a while, enter the church, strip off my armor, and all emotion and pain comes out then- emotions I cannot speak to the world, pain that would scare others, come as tears poured out at the foot of the cross, and there I will find strength to fight on, but now I shall rest awhile. 

The Price of a good day

It was a marvelous spring day,

And for once I had a brief respite from pain,

And this made the day brighter,

The simple sound of wind blowing through the trees,

The smell of roses in the air

And the cloudless sky seemed to proclaim the new, crisp season of spring.

It was a day when one could look up and say, as the poet once did,

“God’s in heaven, all’s right with the world.”

And on that day, I tasted freedom, briefly.

I woke, longing for a repeat of that glorious day,

Instead, I found myself in the midst of battle again

First, the migraine robbed me of language for a while,

Then the fainting began again.

Battle weary, I try to fight with every weapon that I know

I fight with medication, with prayer, with all my being,

But I have trouble holding ground.

My weary body sounds the retreat, but my spirit longs for those moments of peace.

So here I am again- fighting for another day.

Curled up and crying, I give in to emotion raging between the disease and myself.

How do you measure days like this?

Is there a magic formula somewhere?

That tallies the price of good days?

If so, how much does one cost?

Is the price of one good day, two bad days or three?

And if so, how much will it cost to be free of this,

To rise and know that I will be ok?

But, no matter the cost, one day I will win this battle, and with the grace of God, I will not have to pay for days anymore.

A Brief History of Migraines

I am going to depart from my usual poetry to convey a brief history of migraines and treatment. Regular programming will resume shortly.

Headaches have been around as long as man has walked the earth. Headaches are certainly one of the oldest and most catalogued diseases of mankind-noted in every great civilization.

-Trepanation- drilling a hole in the skull to let out "evil spirits" was probably one of the first treatments for migraines. One of the treatments described in Mesopotamian scrolls in 3OOOBC and Egyptian scrolls. 

-15OO BC- The Egyptians also believed that tying a clay statue of a crocodile to the sufferers head would get rid of the headache. 

428-347BC- Plato- one of the greatest thinkers of the western world- describes his belief that headaches occur because people pay too much attention to the body. (Unfortunatly, this view is still with us.}

Hippocrates- Described headaches with aura and nausea, attributed the cause to vapors rising up from the stomach and therefore used to purge sufferers.

Galen- 127-199AD- father of modern medicine- described migraines in detail- and believed they were caused by an imbalance of “yellow bile”, one of the four humours.

-Arabic physicians of the same period used hot pokers stuck in the patients ear to drive away headaches.

-In the middle ages, very little could be done about headaches- there was willow bark and opium, if you were lucky.

1712- term megrim is coined.

-During the age of reason- 17^th and 18^th century- William Harvey described migraines in more detail. Samuel Taylor Coleridge and others resorted to laudanum- a mixture of opium and alcohol to cure their headaches. In some cases it led to addiction.

-Lewis Carol- wrote Alice in Wonderland and Through the looking glass after experiencing Migraine Auras and visiting opium dens to cure his migraines, though he did become addicted.

1938- Harold Wolf advocates use of ergotamine for migraines.

As more is known about the brain and migraines- preventatives- mainly anti-depressants are prescribed.

1993- The first triptan hits the market

Today- preventives are still used. Opium and its derivatives are still the frontline treatment for pain, and many stigmas  remain. But, at least we are making progress. 

Through the lens

I've seen it a hundred times, the fear in others eyes when I come to after fainting.
To me, the fall is normal-
I stand and then, in the blink of an eye, I fall, flying through space for a moment before coming crashing down like a stone or a cartoon character who has just discovered that he walked off a cliff unwittingly.
I come to, on a carpet, or a hardwood floor with people staring at me.
Thier eyes are wide with fear for me.
But I never thought I would see that fear in my own eyes.
I watch the scene the camera has captured, the video of the fall
Standing one minute, my face changes, my eyes stare blankly, as though all thought is slowing down, already preparing for the fall,
And then it happens- I fall.
It is frightening to watch, but now I finally understand the fear of others, but only through the lens.
For though I see it in what the camera captures, I know I will fall again, but I know I will rise again and one day, I can face it without fear.