Service Dogs and fainting

I have posted a number of times about Dora, my amazing service dog. I have posted several times about how Dora has helped me and how I got her. Today, I thought I’d answer the two questions that top the list about Dora and service dogs for fainting and other invisible disabilities.

Why do you have a Service Dog?

Short answer: “I have a fainting disorder.”

Dora’s response to fainting:

I look perfectly normal- in fact you wouldn’t know that anything at all was wrong with me unless you saw me faint. Dora can tell when I am about to faint- she either sits down in front of me if I am walking or blocks my path. If I am in my house, she will get clingy or start acting up to get my attention. When I fall in public, I usually have time to sit down before falling down. Once I am down, she rolls me over so that I am face up, licks me, and stands guard until I am ok. Many people still freak out about the fact that Dora is standing over me until I explain that the dog is doing her job.

Over the past four years, I have seen countless cardiologist and neurologist for the fainting, tried tons of medications, done everything I could think of to little or no avail. In fact, Dora has been the best treatment- she can warn me and exercise has been known to help this condition- and dogs must be walked.

Where did you get her?

A few years ago, my father saw an article in the New York Times about a service dog who was able to alert to a fainting disorder. Once I got the idea, I began contacting organizations. Many places don’t train for fainting disorders-but I found several that were willing to help. The only problem- the wait for a fully trained service dog, even after acceptance into the program is usually between 18 months and 3 years. This is a long time. It feels even longer when you know that a dog can help you with independence. The waiting is the hardest part. The cost can be prohibitive as well. But it is worth it. I learned many things about Service Dogs and programs while waiting. If you think a service dog can help you- do your homework. Call the organizations, visit if you can. You can train your own dog as well.

Dora came from the Auburn University Vet School. I know I have posted several times about how Dora picked me. I then had her trained by a professional trainer who was willing to work with me. I couldn’t have gotten a better dog.

In fact, she has given me a new lease on life. I am no longer afraid to walk down the street alone. I’m not afraid of being kicked out of stores. I feel confident enough to have taken on a freelance tutoring job.  

In short, that service dog you see might be for the blind, it might be a seizure, diabetes or fainting alert dog. All I can say is that she is a great dog and we are a pretty good team.

 

The Sock Monster

Dora: the Sock Thief

I have always thought that the dryer was the only thing in my house that ate socks. This may sound strange, but I swear it has happened with every dryer I have ever used.

As I was scrambling to pack to go the beach for Thanksgiving, I noticed that I didn't have a single pair of socks that matched. My supply of socks was very low. I began to wonder just where my socks had gone. Then I walked into the living room, looked at Dora's bed and found most of my socks piled on her bed. So, the culprit is no longer the dryer, but my service dog.

The good news- it is pretty much her only vice. Bad news, I need new socks. Even superdogs need at least one vice.

Go with God!

Fifteen Years

Fifteen Years

 On October 28, 1997, my life changed forever. I was standing on the field hockey field at boarding school, and the other team turned into purple spots. At the time, I thought it was just a regular migraine and went to the nurse’s office to get my medicine. A week passed and the headache didn’t let up. My mother came up and, on my 17^th birthday, Nov. 4, I had my first appointment with a neurologist. He prescribed Imitrex, and when that did not work, Ativan, and prednisone which did. I learned from this experience. Treatment for migraine was definitely a trial and error field.

I went home, was hospitalized for two days- and this didn’t break the headache. My brother married his first wife the day after that. I was told, “Put on the dress and smile!” A maxim I have lived by a lot.

Fifteen years, numerous medications, neurologists, CT scans, two radiofrequency procedures, and the implantation of an occipital nerve stimulator later, as well as a fainting disorder, I am still here, still fighting this monster known as Chronic Intractable Migraine/New Daily persistent Headache and I will continue to fight until there is a cure. But I will not give up.

On this fifteen year anniversary, here is a list of what I have learned from this disease:

-There is no cure- only ways to make it bearable.

-Friendship is a precious commodity and should be valued

-College students will drive you to the hospital for food.

-The art and science of bribery is a skill to be cultivated  and used when needed.

-True friends will drag you to the hospital kicking and screaming, come up with a military plan to do so, write professors when you lose the English language, fight with doctors on your behalf, and distract the heck out of you in pain. They are treasures.

-You have to have faith in something.

-Sometimes, those who seem the most faithful, aren’t, but I believe God will bring us through-somehow, someway

-Most importantly, I have learned not to give up, and to keep searching for answers.

Go in Peace,

Sconesail

 

Dora: The Amazing Service Dog

Dora completed training to be my service dog this week. My father and I went to pick her up and then drove on to Birmingham for a nice lunch. I go up for some extra training on Monday.

Over the past two years, many have asked me the following question; "Just what do you think a service dog will be able to do for you?"  I would always answer," The dog would be able to predict some attacks, which would give me some warning before I faint. Dora knew this immediately. The dog would be able to go with me everywhere and thus provide greater independence. The dog would also be a good ambassador and source of emotional support"  I have had more than one doctor tell me, "It sounds like you just want a dog." I actually have a dog- a standard poodle named Max. He is good, but he isn't a service dog.

The truth is that Dora has exceeded all of my expectations- from the the day I met her, she knew when  I was about to faint. In fact, she picked me. I am usually able to get down to the floor before fainting, or if she doesn't catch the attack, she immediately comes to me and stays with me until it is over. She will not let me get up if she thinks I will fall again. I am no longer afraid of walking down the street and fainting because I know Dora will alert. Earlier this summer, I was walking home from the gym and fainted on my way home. Some very nice maintaince guys from the college across the street gave me a ride home in their golf cart. Fifteen minutes later, a professor was at my door to make sure I was ok and wouldn't sue. 20 minutes later, I got a phone call from my parents telling me that I had scared the college. Now that Dora is with me, I can walk with confidence. As exercise seems to help my condition, this is good for both of us. Service dogs or not, all dogs need walks. Needless to say, I learned a great deal from the Dog Whisperer. Dora also goes to volunteer with me at an elementary school. She will be helping some of the kindergartners there to read. She is a good ambassador for service dogs and for me. People also do not freak out as much when I have Dora with me and under federal law, I can no longer be called a liability.

I still faint a great deal anywhere from 5-20 times on an average day. But Dora has helped be alerting and by allowing greater independence. The headaches are still horrendous, but she knows when they are bad as well. Everything that people say about animals calming you down is true.

As we embark on this adventure, I hope to spread the word and gain even more independence. Dora stories will also be added to the blog from time to time.

Migraine Flashback: The Gospel and the Military Plan

Due to the fainting, I have been called a liability many times. In most cases, it happens because people are scared- they are scared to see me fall, but also scared of repercussions.  Unfortunately, we live in a society where every business is afraid of a lawsuit.  However, I will never forget the first time that I was called a liability due to migraines.

I was in divinity school at the time.  The school knew about the migraines, but was not very accommodating. One day, I was called into my advisor’s office. I was surprised to find both my advisor and the Dean of Students in the office. Note- both of these people were ordained ministers in the Church. They said they were “concerned” about the headaches. I will never forget what happened next. My advisor then said, “Your migraines make you an inconvenience to others and a detriment to the community.” When I asked how they made me a “detriment to the community, they said, “Well, you have asked people to for a ride to your doctor’s office and that means you are taking them away from the community. (My doctor’s office was two blocks from the school.) I think they were desperately trying to justify their position. 

The honest truth is that they were scared. I remember leaving the office in shock. It was impossible for me to reconcile these horrible comments with the fact that I was in a school to prepare for the ministry and that two of those ministers had no problem telling me that I was an “inconvenience.” Clearly, they must have skipped the class when they were studying the Gospel. At the very least, both seemed to have forgotten a passage read every Sunday in the Rite One service of communion-

            Here what the Lord Jesus Christ saith: Thou shalt love the Lord with all your heart, soul and mind. This is the first and great Commandment and the second is like unto it; Thou shalt love they neighbor as thyself. On these two commandments hang all the law and the prophets”

However, there were several people there who were willing and able to help me- who refused to believe what my advisors had said. One of these was a former Marine. If I needed to go to the doctor, he came up with a military plan. I went out one door. He went out another- after scouting and making sure that there were no teachers around, we met in back parking lot and he took me to the doctor. Afterwards, we stopped by the store and got something, so that no would ask where I had been.

I left divinity school after my first year. But for me, the call to the ministry has never gone away. In the past few years, I have found that I can use my talents and minister in different ways. I write AR tests for a Christian School, I volunteer at an elementary school, where the phrase “It is ok, sometimes SS falls down” is spoken by 6 year olds. Though I still feel the call to ordained ministry, I have also realized that the collar doesn’t make the minister. In fact, the ministry is made up of a thousand little things, of the choices we make, and how we treat others. It is in the struggle between faith and doubt. It is in every moment I am in pain and know that I can call someone and they will listen. It is in the many falls when others try to help.  The church is the body of Christ and we are called to be witnesses to that and to strive to be like Christ. Most of all, I have found that during this crazy journey with migraines and fainting, God has always been there. He may not give what we want, but he gives what we need.

Call for Submissions!

I am hosting the September Headache and Migraine Blog Carnival. The topic is Talking About Migraine: How do you talk to the people in your life about migraine disease? How open are you? What do you share and what do you keep to yourself and why?

Entries are due tomorrow at midnight.

The carnival will be posted here on Tuesday.

Some Changes: Less poetry, More stories.

 

I know I haven’t been blogging as much lately. There has been a lot going on-both good and bad. I got a service dog.  The headaches are still bad. School has started- so I am back to volunteering and that helps a lot too.

Over the past few weeks, I have been thinking more this whole journey through migraines and fainting.  So I am going to introduce some more stories and things that have happened over the past fourteen years. So, in addition to many Dora stories, I have decided to introduce a “flashback” section of the blog. So welcome to my crazy life!

I can promise more stories, some good, some bad, but all have shaped this crazy life of mine.

Note: many names will be changed to protect the innocent, the guilty, and my friends.

Dora the Service Dog

Dora

I finally have a service dog! Her name is Dora, which means gift, and she truly is a gift to me. I have been on the waiting list for a service dog for about a year or so now. The service dog is an alert dog- she can pretty much give me a few seconds warning before I fall. This is great, as it allows me to get to the floor and such. She also stays with me until it is ok.

Though I have been on the waiting list with an organization, Dora came to me through a different route. The vet school located about 50 miles away trains dogs for TSA/homeland security. Due to the fact that I am fainting more, my parents are not getting younger, and other things, I thought I would call and see if there were any dogs who might work as service dogs, but didn’t make the final TSA cut. When I called, the person in charge told me that a lady who ran a service dog organization was coming to look at dogs later that week, so I asked if I could come too. He said sure.

As soon as they brought Dora in, she came over to me, and I passed out ten seconds later. This happened twice. The third time, Dora was across the room eating treats. She stopped, perked up, and began running to me, by the time she got there I was falling and she let me fall on her. After several people scraped their jaws off the floor, one said, “I think we just found S’s dog.” I spoke to the lady who ran the organization and she said it was pretty clear that Dora was “mine”. She also gave me the name of several trainers.

I picked her up on Monday and she has been doing great. She is a black lab and very calm. She is good at alerting. She starts training on Sept 1 and I will go up twice a week to train with her. I am so grateful to have her.

So a new adventure begins.

You might have a fainting disorder if:

Your mother tells you to take some medication before you go to the cocktail party.

The Balance of the Fight

I don’t understand this fight anymore.

Day after day, I fight this war against pain and fainting- using the greatest weapons at my disposal.
There are pills, potions, and medications that grant me a few hours of relief,
A sophisticated device is implanted in my skull to fight the disease and to allow the medicine to work.
And then there is the oldest and greatest weapon of them all- faith, prayer, and belief in God. These are my weapons, this is arsenal that grants me some respite, some peace.
And I know that I have no choice- I must fight this battle and I will win- and so day after day, year after year, I fight to lead a normal life.
But it is not the only war I have to fight.

This second front is worse- for it is here that others judge me.

Here the paradoxes multiply  and I fight just to keep the balance.
I must appear to be well when I am not.
I must mask the effects of medications that relieve the pain, so no one will see that I am in pain.
Though this daily pain would bring many to their knees, and have many begging for relief from pain, and it would be treated; I must keep calm, soldier on, and deny that I need a respite.

Lord, I am tired and I do not know what to do anymore.
I can fight the war against pain, but the battle here is overwhelming.
All I can do is fight, and pray, and hope that others will understand.
But one day, Lord, you will save me, you will take me to a place where pain will be no more,
And there I shall live in peace.

LIVING WITH IT

Living with it

Something absolutely amazing happened in the last two weeks- three doctors and I agreed on an important subject. Basically, all of us agreed that the fainting has a huge and adverse effect on my life and that we should try to treat it while I try to live with it. The question has changed from, “what is it?” to “How do we treat it while trying to find out what it is?”

For the doctors, this doesn’t mean they aren’t looking for a cause or a more permanent treatment. This is an unusual case and the one of the few clear symptoms is sinus tachycardia every time I faint. This is not a rhythm problem and so can’t be paced. It is a symptom and it means the heart is working harder to get blood to the brain. The fact that I come tend to come around quickly is also odd, but indicates blood returns to the brain rather quickly. We also know that the constant fainting came on after a significant viral illness and probably knocked out some part of the autonomic nervous system.

For me- this indicates some changes in life. I am still searching for answers. But right now, I will continue to do what I have been doing for the last three years- living with it. It means that I will continue to do things, continue to explain it as it is. It means that life goes on and having a game plan-any game plan is helpful. 

So, with the fainting, as with the migraines, I will continue to live and live well with these disabilities. I am hoping and praying to be matched with a service dog in the fall. I look forward to the beginning of school so I can volunteer again. I am also looking into some other things. Meanwhile, I have great friends, am looking forward to meeting a nephew in the fall and it is tomato and peach season here. Days like this don’t come often, so I am going to enjoy it.

Jefferson and Adams- two reasons to celebrate July Fourth!

John Adams and Thomas Jefferson

John Adams and Thomas Jefferson were both instrumental in the founding of this country.  Both were on the committee which drafted the Declaration of Independence. Both were presidents. During the course of their lives, they were friends and political adversaries.

They were certainly very different people.

Jefferson is known as a renaissance man- a man who loved new ideas, loved learning, and was extremely creative. He was shy and did not like to give speeches. In fact, he usually delivered a written copy of his State of the Union address to Congress where it would be read into the record. He invented the dumb waiter, a system of copying letters, organized the Louisiana Purchase and wrote the Declaration of Independence, the Virginia Statues of Religious Freedom, Notes on the State of Virginia, and founded the University of Virginia. Monticello, his home and plantation near Charlottesville, Virginia was his pride and joy. He spoke French and was one of the people who successfully convinced the French to aid the American army during Revolutionary Way.  He was also our 3^rd President.

Adams came from a different background.  He was happy to give speeches. He was a lawyer and a farmer from Massachusetts. He did, however, encourage Jefferson to write the Declaration of Independence. He also served as Ambassador to France, though he did not particularly enjoy the French way of Life. He was a good judge of character and was able to persuade the Continental Congress to appoint George Washington Commander and Chief of the Army. He served first as Washington’s Vice-President and then was elected President in 1796.

In 1800, the two men ran against each other in the Presidential Election. The election of 1800 was every bit as partisan and ugly as it is today. Many disagreed with Adam’s creation of the Alien and Sedition acts during his quasi-war with France. It was one of the first elections where it was clear that partisan politics played a role. Though it came down to the wire, Jefferson won.

In 1809, when Jefferson left office he concentrated on Monticello, and managed to found the University of Virginia. After writing John Adams a note of condolence on the death of his wife, Abigail, the two former presidents began corresponding regularly. These two men who played huge parts in the founding of our great Nation were, during the course of their lifetimes, friends, enemies, people who tolerated each other to achieve greater things, political rivals, presidents, were friends in the end.

July 4, 1826

John Adams died in Massachusetts.  When he realized it was the Fourth, he said, “It is a great day. It is a good day. Jefferson lives.”

Thomas Jefferson died the same day. His epitaph reads:

HERE WAS BURIED THOMAS JEFFERSON
AUTHOR OF THE DECLARATION OF AMERICAN INDEPENDENCE
OF THE STATUTE OF VIRGINIA FOR RELIGIOUS FREEDOM
AND FATHER OF THE UNIVERSITY OF VIRGINIA.

Happy Fourth to All! If it were not for men like Jefferson and Adams, we could still be British!

(Most of the information is from Wikipedia and my own memory of history.)

Migraine Awareness Month

June is Migraine Awareness month. I have not been bloging much lately due to the migraines and fainting, but others have. Check out the very informative posts at Somebody Heal Me! Here is the link: http://somebodyhealme.dianalee.net/

Go with God,
sconesail

Liability Waivers

I am really tired of the fact that, due to fainting, some consider me a liability risk.  I have also been told that I am a liability by several businesses in town. Here is a brief list of places that are scared of me and have essentially told me that I am a liability:

The Gym at a local hospital. This gym was located at the hospital, was about 50 yards from the ER and one floor down from the Cardiologist office. Furthermore, my mother, who is a physician, was with me. There were also many patients, and some had two or three stents, using the gym. I made the mistake of fainting when I was signing up and the manager told us that I was too liability risk.

A local church: I was helping with their English as a Second language class. I explained the situation to the students and most of them had no problem, as I am only out for a second or two. Most of the students were Korean and all had graduate degrees. The first time one of the students saw it, she said, “Here’s my card, if you ever want to try any Chinese medicine, give me a call.” However, the volunteers did not like it. The head of the program accused me of making a scene and told us that we were no longer welcome there because the fainting caused too much commotion.

In my local grocery store, I am not allowed to walk anymore. However, the manager put this in a very good way. He said, “If you use the handicapped cart, we wouldn’t have to bring it to you if you do faint and you would be safer. If you ever need help let us know.”

This brings us to what happened last week, when I discovered that simply walking two blocks from the gym also makes me a liability risk. I was walking home from the gym last week and I fainted in front of a building owned by a local college. Some very nice maintenance men were working there at the time. They asked if I was ok and I said yes. However, I passed out again about a minute and they offered to give me a lift home in their golf cart. (My house is across the street from the college entrance. I thanked them for the ride and really didn’t think any more about it. This is the south, and I thought they were just being nice. Fifteen minutes later, the head of College security and a professor showed up at my door to make sure I was ok. I explained the situation, and happened to faint in front of them. I assured them that this was normal. 30 minutes later, I received a call from my father who informed me that the college had called about it and wanted to know if I was ok.  My father simply said, “We just got a call from the college. What happened and why are they scared?” I also figured out that they did not want to be sued.

My state is known as “tort hell,” and many people sue for anything. I would never sue anyone, because the fainting problem is not something anyone can control. After three years of fainting constantly, I am tempted to have a liability waiver drawn up saying that the fainting is normal and that I won’t sue. I would also love to put a clause in their saying, “I promise not to sue and it is ok to help me.”

I hate the fact that I constantly have to explain this to others. The whole thing is frustrating and I am really tired of it because I often have to calm people who see me faint and prevent them from going overboard. I just wish I could make them realize that I am ok. I do not want to be known as the fainting girl and am determined to do the things I need to do. I am also hoping and praying that I get matched with a service dog in the fall. I have noticed that if I have Max, my father’s dog with me and I faint, no one freaks out.

I am not a liability; I am certainly not defined by the disease. I hate that it scares others.  If waivers would help, I will print them up tomorrow.

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.

Other Worlds and Escapism

Other Worlds and Escapism

I find that during a bad migraine, I tend to escape into other worlds- worlds of words or even television worlds. They take my mind off the pain- for a little while at least. I also think that it is a coping mechanism- and this is true for many migraneurs. Lewis Carrol wrote Alice in Wonderland while dealing with migraines and smoking opium in Oxford. Other famous writers have done the same.

So when the pain becomes too much (and I am on speaking terms with the English language), I find myself picking up a book and escaping into another place, another time, and another world. I realize that this is probably one of my oldest and best ways of coping.

So here is a list of favorite coping books:

Harry Potter- the entire series

Chronicles of Narnia

The Aubrey- Maturin series by Patrick O’Brien (or anything about British Naval History)

Bernard Cornwell- I particularly enjoy his Saxon Chronicles- if you want a good story about how England, as we know it came to be- read it.

Bedlam’s Bard by Merceded Lackey

Anything by P.G. Wodehouse

The Spellman Files by Lisa Lutz.

I will admit that I generally like the fantasy genre.  I also love history.

Pretty much any light mystery will do as well.

So there you have it- my list of books to read when you have a headache.

I will also say this. I blame my father for this addiction to literature. He raised three children to love books. Unfortunately, his bill for books at Borders, Amazon, and Barnes and Noble has always been high. But I suppose he would rather have us reading.

AHDA Headache Petition

The Alliance for Headache Disorders Advocacy has started a petition to push  federal funding to increase research and new treatments for migraine and headache disorders.

The petition link is here: http://www.sciencenews.org/view/feature/id/337574/title/Head_Agony

More information about this petition can be found here: www.migraineadvocacy.org

Please read and consider signing the petition. Migraines and Headache disorders not only effect the sufferer, but also family and close friends. So, please ask family members and friends to consider signing as well.  Thank you.

Go with God.
sconesail

Liability

Liability

Liability – 1. Something for which there is an obligation, usually a debt. 2. A drawback or hindrance”

I have begun to hate this word. Over the past three years, I have seen this word twisted and used against me or others with invisible disabilities.  In my mind, it has become synonymous with fear and banishment.  I have also discovered that there is a right and a wrong way to approach the problem.

The Wrong Way

1.     I walked into the cardiologist’s office for an appointment and as I was signing in at the desk, I fainted. Every patient over the age of 70 jumped up to help. I came to with several pairs of eyes staring at me; one of them was holding my head straight. Two had canes and as my mother approached, they said “Who are you?” My mother replied, “I am her mother and a physician," at which point she was allowed to pass. What baffled me most though, was the fact that it took at least five minutes for a nurse to come out, but about three for the office manager to ask if I was going to sue them. In this case, liability won out over patient care.

2.     For several months, my roommate and I were helping out at the ESL (English as a Second Language) classes at her Church. I was upfront about the fainting. I told both the director and the students. The students never seemed to mind when I fell on the floor dropped to the side and came to in a few seconds.   However, one day, when I was fainting some, I pulled a chair next to me to fall into it. This is what I do at my parents' house for dinner; placing chair next to me simply allows me to fall into the chair instead of onto the floor. One day, another volunteer, came over and asked to use the chair (I had just fainted.) I said, “No, I am sorry, can I please keep it” He then tried to grab it, and my roommate proceeded to explain why the chair was needed. And then, several students simply put their bags in it and “saved the seat for a friend.’

About two weeks later, I got up in when the students were changing classes to get a cookie and I fainted. I explained that I was fine, that this happened all the time. My roommate also explained this. One of the volunteers then said “Well, if you faint so much, you shouldn’t be here.” I told him, “Well, sir, if I didn’t stay involved with things I wouldn’t have a life and that is not a solution.” Another volunteer then said “But you could hurt yourself.” I said, “I already have, but I can’t stop living. I faint just as much at home as I do here.”  I went outside to compose myself and my roommate explained the situation loudly. 

The female volunteer then went to get the director of the program.  She didn’t ask what happened. She got mad at my roommate when my roommate essentially said that this was discrimination. The director continued to yell at us, all the time saying “You aren’t making a scene here.” As we walked to the other room, I fainted. The director said “Get up!” I tried to get everyone to be quiet- hoping that she would listen. My roommate and I tried to tell her what happened.

She replied “It doesn’t matter what happened.” She refused to listen to anything we had to say.  She went on to say, “This is it, no more. You are not welcome!”

My roommate then asked, “Were you lying when you stood up in front of the congregation and said that “anyone who wanted to take part in this ministry was welcome to.” The director responded “Well, I didn’t mean people with problems.”

“I have just been told that I cannot come back to a program because I faint and I do not think that is ok,’ I replied.

The director said, “You cannot come back to this program because, for whatever reason, it causes commotion.  We can’t have you falling out in there. It scares people.” We pointed out that the students, who were benefitting from the program did not mind, She then told us to leave or she would call the police. (Never mind that it was church property and that we were not doing anything except volunteering.) It was as my roommate said discrimination in the name of the Lord. Personally, I wish she would re-read the Gospels.

          I eventually met with the pastor who suggested some other programs to participate in- including  one along the same lines, but under a different person. I am hoping that this will be better.

The Right Way:

            When I lived on the other side of town, I would frequently shop at a particular grocery store. I also fainted many times, and it usually happened in the back of the store. The people were very nice and would usually bring me the motorized cart that people can use if they have mobility problems.  After I fainted in the back for the fifth or sixth time, the store manager said, “You know, instead of falling, would you please just get the motorized cart on the way in. This way, we won’t have to worry about your injuring yourself in a fall and you wouldn’t have to wait for help. It would be better if you didn’t walk upright, because we don’t want you to get hurt.” This store kept a customer by offering a simple solution and not saying, “You are a liability.”

I hate the fact that this disease makes me a liability- that is scares people.  Falling down 5-20 times each day scares me too. For the past three years, I have done everything possible to stop it, but I can’t stop it. We are not really sure what this it. It has baffled some of the best minds in the country. But, I refuse to stop living because of this. I am going to continue to volunteer. I will try out the new program, but if that doesn’t work, there are other places that will work with me. I don’t know why I have this disease. I do know, that for whatever reason, I have it, and the only thing that I can do is pray, follow Christ and know that he has made me and he will see me through this.

You may not be able to see my disability, unless you see me faint, I appear to be just your average girl. However, in many people's eyes seeing is believing. So when people are confronted with the visible signs of this, they seem to have trouble dealing with it and will do anything not to deal with it. I just wish they would realize that between migraines and between falls, I am not only normal, I have a great deal to offer. And I will continue to do so.

Go with God!

           

           

       

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