October 28, 1997
It was a beautiful fall day in Baltimore, MD. I was playing field hockey- it was the last game of the season. Suddenly, as I looked down the field, I began to see zig-zags and the other team turned into big purple spots. I knew what was happening- I was getting a migraine. I looked at the coach and she pulled me out of the game and sent in a substitute. I walked up to the infirmary to get my migraine medicine. I thought it was just another migraine and would go away in a few days or a week. I had no idea that my life was about to change forever.
I got my first migraine at age 12. The headache would last a few days or a week. I would simply take the Tylenol 3, rest, maybe miss half a day of school and then it would get better. But this one was different- it didn't go away.
On my 17th birthday, I saw my fist neurologist. He diagnosed my with migraine, prescribed Imitrex, a steroid course, and ativan for sleep. This was only the beginning.
Since that October day,
I've taken more medication than I thought possible.
Seen so many neurologists that I have lost count
Had friends drag me kicking and screaming to the ER because they couldn't stand to see me in pain.
I've been hospitalized 5 times.
I've been at seen at 4 headache clinics.
Seen some of the top neurologist in the country
Graduated college and high school on time- (something several doctors told me would never happen.)
had 2 radiofrequency procedures
had an occipital nerve stimulator implanted and have had 4 revisions.
learned that college students will do anything for food. (If you can take me to the doctor, I'll buy you dinner.
I've mastered bribery.
I've mastered the art of faking it until you make it.
Shortly after the headache began, my mother said, "Take the meds, put on the dress and smile/" This has become my motto.
I've had a friend draw a military plan to get me to the dr.
Navigated the intricacies of the medical world.
Learned the meaning of true friendship.
Had several rounds of botox
More IVs than most have in a lifetime
learned that faith and a positive attitude are great assets.
-justified purchases by thinking- well, the book will help and it is cheaper than an ER visit.
-connected with so many people fighting this disease.
I've learned to keep fighting.
This disease has changed me, but I've also learned things in the process.I've learned that true firends are rare and treasured-these friends will drag you a doctor, distract you and be with you even in your darkest hour. I've also been able to connect with others who fight this every day. I've learned to fight this disease. It is a part of me, and even if I sometimes lose the battle, I know that one day, I will win the war.
Most importantly, I've learned not to give up.
Sunday, November 2, 2014
Sunday, October 12, 2014
Dysautomia Education
Dysautomia/ POTS/Neurocardiogenic Syncope is not the most common disease, and as a result, few people know about it or even recognize it. It presents in a variety of ways and has many symptoms. For example, one person might faint several times a day, another person will just get tired easily, and another might experience different symptoms. I have seen many doctors over the past six years due to the fainting. There is no "quick fix" or magic bullet for this disease.
I consider myself lucky if a doctor has seen or heard of it before. My father pointed out that this disease seems to strike young adults- people in their late teens, twenties, or early thirties. Due to this, and the fact that there isn't a quick fix, doctors don't know what to do. If someone is having a heart attack, you do a bypass. If there is an arrhythmia, simply implant a pacemaker and try to control this with medication. However, with dysautonomia there is not a lot one can do. Yes, there is medication that helps, but it does take time to see how that works. It isn't a black and white diagnosis. Due to this, many doctors will say, "Oh, it is just stress." or "it is all in your head." Sorry, but I think fainting 15 times a day is a pretty good indication that something might be wrong.
This disease can take over your life. You never know if it is going to be a good day or a bad one. It robs you of sleep, of doing things, and of your independence. It effects your friends and family as well. I never thought that my parents would say, "Ok, pick a floor, but don't go upstairs unless we are here." This was simply a safety thing. I never thought that I would need to make sure it was ok to fall on someone if I fainted during an event, or put a towel on an empty chair so that I could fall that way during a meal. A few years ago, a friend and I were volunteering in an ESL program at church. I never thought that the students, who had degrees in subjects I couldn't do if my life depended on it, would willingly cover for me when I fell. Later on, I discovered that the fainting scared the volunteers, but not the students.
I have been dealing with this disease for six years. I have two brothers- one who understands the problem and one who doesn't. B, the brother who doesn't "get it," despite being told in plain English about this disease, had an epiphany. Apparently, one of his business contacts has the same thing, but her case is not as severe. One day, I got a call from B asking if I had dysautonomia and then asked if I had POTS. B went from total denial to starting a support group in one day. By the end of that day, I had an email from my brother including the names of two doctors who treat this, and a way to contact some others with the same disease.
So many people have to deal with this disease alone. Even with a pretty supportive family, it is hard. You can't pin down the problem. I'm lucky that many of friends understand this disease. I also know that it scares my brother. Still, once he realized that we weren't the only family dealing with this, his attitude changed. He isn't as scared of the fainting.
I guess my point is that we need more education about this disease- both in the medical community and in public. There may not be a treatment yet, but there will be one day. I think education is key.
Dysautomia/ POTS/Neurocardiogenic Syncope is not the most common disease, and as a result, few people know about it or even recognize it. It presents in a variety of ways and has many symptoms. For example, one person might faint several times a day, another person will just get tired easily, and another might experience different symptoms. I have seen many doctors over the past six years due to the fainting. There is no "quick fix" or magic bullet for this disease.
I consider myself lucky if a doctor has seen or heard of it before. My father pointed out that this disease seems to strike young adults- people in their late teens, twenties, or early thirties. Due to this, and the fact that there isn't a quick fix, doctors don't know what to do. If someone is having a heart attack, you do a bypass. If there is an arrhythmia, simply implant a pacemaker and try to control this with medication. However, with dysautonomia there is not a lot one can do. Yes, there is medication that helps, but it does take time to see how that works. It isn't a black and white diagnosis. Due to this, many doctors will say, "Oh, it is just stress." or "it is all in your head." Sorry, but I think fainting 15 times a day is a pretty good indication that something might be wrong.
This disease can take over your life. You never know if it is going to be a good day or a bad one. It robs you of sleep, of doing things, and of your independence. It effects your friends and family as well. I never thought that my parents would say, "Ok, pick a floor, but don't go upstairs unless we are here." This was simply a safety thing. I never thought that I would need to make sure it was ok to fall on someone if I fainted during an event, or put a towel on an empty chair so that I could fall that way during a meal. A few years ago, a friend and I were volunteering in an ESL program at church. I never thought that the students, who had degrees in subjects I couldn't do if my life depended on it, would willingly cover for me when I fell. Later on, I discovered that the fainting scared the volunteers, but not the students.
I have been dealing with this disease for six years. I have two brothers- one who understands the problem and one who doesn't. B, the brother who doesn't "get it," despite being told in plain English about this disease, had an epiphany. Apparently, one of his business contacts has the same thing, but her case is not as severe. One day, I got a call from B asking if I had dysautonomia and then asked if I had POTS. B went from total denial to starting a support group in one day. By the end of that day, I had an email from my brother including the names of two doctors who treat this, and a way to contact some others with the same disease.
So many people have to deal with this disease alone. Even with a pretty supportive family, it is hard. You can't pin down the problem. I'm lucky that many of friends understand this disease. I also know that it scares my brother. Still, once he realized that we weren't the only family dealing with this, his attitude changed. He isn't as scared of the fainting.
I guess my point is that we need more education about this disease- both in the medical community and in public. There may not be a treatment yet, but there will be one day. I think education is key.
Friday, May 2, 2014
Expeditions and Adventures
I have always known that dogs are great icebreakers. (Trust me, anyone and everyone will ask about or find an excuse to say something to or about your service dog.) Also, be prepared, nothing on this planet can scam kids or adults out of food like a labrador. Yes, she is well fed and well loved. She has also gotten the message about service dogs out better than any human can or will.
So, when I got Dora, it didn't surprise me that kids in the neighborhood rejoiced. It took a few months, but soon the 4 year old who lives in the apartment next to me asked if he could help me and throw the ball for Dora. I said "Of Course!" This simple act has led to a routine- Dora is ready to go at 330. I go over and simply ask if the 4 year old, plus anywhere from 4-5 cousins would like to throw. It started with simply throwing the ball, a few games of red light/green light, and a piece of candy. Easy, Fun, and Good for everyone.
However, the kids have upped the stakes on me, but it still helps. It started with a single walk to the football field about two blocks from the apartment. These walks have now developed into full expeditions. The kids are great, and so is Dora. What is interesting to me is how much I have learned about by neighborhood by simply exploring it. A walk to the fountain became a science experiment in what does and doesn't float. We also met a man who saw four kids fascinated by a fountain, who then showed us the one he is constructing, let us feed the fish, and taught us to say "thank you" in Sign Language.
I'm meeting new people. Rediscovering what I was taught and am having many new adventures, and, as an added bonus in the digital age teaching and getting kids to believe that a walk outside is a lot more fun than a computer game.
I have always known that dogs are great icebreakers. (Trust me, anyone and everyone will ask about or find an excuse to say something to or about your service dog.) Also, be prepared, nothing on this planet can scam kids or adults out of food like a labrador. Yes, she is well fed and well loved. She has also gotten the message about service dogs out better than any human can or will.
So, when I got Dora, it didn't surprise me that kids in the neighborhood rejoiced. It took a few months, but soon the 4 year old who lives in the apartment next to me asked if he could help me and throw the ball for Dora. I said "Of Course!" This simple act has led to a routine- Dora is ready to go at 330. I go over and simply ask if the 4 year old, plus anywhere from 4-5 cousins would like to throw. It started with simply throwing the ball, a few games of red light/green light, and a piece of candy. Easy, Fun, and Good for everyone.
However, the kids have upped the stakes on me, but it still helps. It started with a single walk to the football field about two blocks from the apartment. These walks have now developed into full expeditions. The kids are great, and so is Dora. What is interesting to me is how much I have learned about by neighborhood by simply exploring it. A walk to the fountain became a science experiment in what does and doesn't float. We also met a man who saw four kids fascinated by a fountain, who then showed us the one he is constructing, let us feed the fish, and taught us to say "thank you" in Sign Language.
I'm meeting new people. Rediscovering what I was taught and am having many new adventures, and, as an added bonus in the digital age teaching and getting kids to believe that a walk outside is a lot more fun than a computer game.
Sunday, April 27, 2014
Patients for a moment blog carnival available.
There are some great posts there!
You can read it here:Patients for a moment carnival
There are some great posts there!
You can read it here:Patients for a moment carnival
Fighting the Invisible Battles
“Imagine you are faced with an enemy you cannot defeat.”
These are the opening words to a recent documentary I viewed about China. (Yes,
the headache has been bad and for some reason I turn to ancient history because
it makes a distraction for me and at the same time makes me very happy I live
in the age of modern medicine.) However, these words define my life.
I can’t completely defeat the pain. The greatest and wisest
physicians I know can’t make the pain completely go away. All we can do is
stave it off enough so that I can function as normally as possible. The stimulator
implanted above the occipital nerves, Botox injections every three months,
along with some powerful pain medications and muscle relaxants with an
occasional IV of Depakan can only hold it off. But I have to find a way to live
with it and so I do.
I take the medications. I read. I walk, play, and curl up
with Dora the GREAT Explorer, my service dog, who provides more solace than
many medicines. I volunteer. I spoil my nephew and the neighborhood kids.
I can’t defeat the fainting, either. I want to. Every doctor
and man of science I have seen about it has basically told me that I have to
live with it. I have been told everything from “it is psychological and she is
making it up, “to it is epilepsy, a heart problem, and a nerve problem.” There
isn’t an answer. Paperwork to see the
first doctor I have seen in two years to address this problem is on my dining
room table. But still. I have to find a way to live with it. I take the meds, I
take Dora everywhere, and I live my life- because there is no other choice.
So this leaves me searching for answers and looking for the
every changing “Middle way”. I am an Episcopalian and in that “middle way” I
have found God and know that he will lead me. That he is really the one running
the show here.
So sometimes I sue for peace. Sometimes I must use powerful medicines to fight the beast. But one day, I will see up close the golden cross I follow and glimpse in the distance and then I shall be free. But until that day comes, I shall fight.
Monday, March 10, 2014
Poem: Something is Wrong
Something is wrong, Lord.
I don’t know what to do anymore.
I fumble around in the dark, searching, seeking for answers.
I know you are there- for in the distance I see the light-
It hangs above a cross and the darkness cannot overcome it.
It is this light that is guiding me through this wilderness.
Your son stayed here for forty days and forty nights-
And though he was tempted by the devil- who tried to give
him all earthly power- He stood firm.
Maybe he was staring at the same light; but the darkness
couldn’t overcome him.
Lord, I’m terrified.
I fall again and again and sometimes I wonder how much more
I can take, but I keep going.
So here I am- knocked down by pain and fainting.
I pray for strength every time I get up.
Now the pain is nearly unbearable and I am scared.
Now the silent enemy attacks and I must put on the Gospel
Armor and join the fight once more.
But I am weak and the arsenal is limited- I fight with medications,
with stimulators, with a dog beside me.
I don’t know what to do except hold on; fix my eyes upon the
light and hope for peace.
Wednesday, February 26, 2014
New Name, New Link
Hi All,
I explained in an earlier post that I was changing the name of the blog. It is now Adventures in falling!
The blog can be found here at:
http://adventuresinfalling.blogspot.com/
Go with God!
Sconesail
I explained in an earlier post that I was changing the name of the blog. It is now Adventures in falling!
The blog can be found here at:
http://adventuresinfalling.blogspot.com/
Go with God!
Sconesail
Sunday, February 16, 2014
Dora: not just a medical alert dog
Dora decided to branch out and try her skills at being a fire, or at least a canine smoke detector this week. I loaded the dishwasher Thursday morning. It sounded kind of funny, but I just thought that a glass or spoon was shifting in the washer. I went into the living room to sit down. I didn't think anything of the noise at all.
About five minutes later, Dora started going crazy and running between me and the kitchen, specifically between me and the dishwasher. I got up to see what was going on. I went into the kitchen and Dora stopped in front of the dishwasher. It felt hot and there was a faint smell of smoke. I opened the dishwasher and discovered that a plastic Tupperware lid had fallen down and was interfering with the heating unit. I took it out, let the washer cool down, then started it again. The dishes got clean and Dora got to prove that she is a really good fire dog. I suggested she check in with the fire station down the block, but the position was taken. She also said she loved the variety of skills she is learning around me.
So here is to Dora, the amazing fire and fainting detection dog!
Go with God
sconesail
About five minutes later, Dora started going crazy and running between me and the kitchen, specifically between me and the dishwasher. I got up to see what was going on. I went into the kitchen and Dora stopped in front of the dishwasher. It felt hot and there was a faint smell of smoke. I opened the dishwasher and discovered that a plastic Tupperware lid had fallen down and was interfering with the heating unit. I took it out, let the washer cool down, then started it again. The dishes got clean and Dora got to prove that she is a really good fire dog. I suggested she check in with the fire station down the block, but the position was taken. She also said she loved the variety of skills she is learning around me.
So here is to Dora, the amazing fire and fainting detection dog!
Go with God
sconesail
Name Change
I have decided to change the title of this blog. I did this, not only because I felt it was time for a change, but to more accurately reflect my current situation.
One of my parent's good friends used to say that he "Never travelled; He had adventures." Needless to say that life with fainting, headaches, and a service dog has proven to be quite an adventure.
Even though I didn't choose this disease and have no idea why I have it, I have to live with it. I will not let it define me. And I will fight with all I have. There are many times when I felt there are only two choices in dealing with the fainting- one can either cry or laugh. For the most part, I choose to laugh.
I promise there will be more Dora stories, poetry, and just life in general. Please join me in this new and crazy adventure!
Go with God!
sconesail and Dora
I have decided to change the title of this blog. I did this, not only because I felt it was time for a change, but to more accurately reflect my current situation.
One of my parent's good friends used to say that he "Never travelled; He had adventures." Needless to say that life with fainting, headaches, and a service dog has proven to be quite an adventure.
Even though I didn't choose this disease and have no idea why I have it, I have to live with it. I will not let it define me. And I will fight with all I have. There are many times when I felt there are only two choices in dealing with the fainting- one can either cry or laugh. For the most part, I choose to laugh.
I promise there will be more Dora stories, poetry, and just life in general. Please join me in this new and crazy adventure!
Go with God!
sconesail and Dora
Wednesday, February 5, 2014
New Year, New leaves, and an update!
I know it has been a while since I last posted here, I thought I would update you on life in general.
In November, I had a horrible migraine that led to a four day hospitalization. But it did break.
Since then, I have slowly been getting back on track. I have made a few changes in my life- trying to get out more, looking for some part time work, cleaning. Basically, trying to see if doing things a little bit at a time will help. So far it seems to be working!
One of the worst things about migraine and fainting is the fact that it can hit you at any moment, but you still have to muddle through. But I know that I can and that I will.
Go with God,
sconesail
I know it has been a while since I last posted here, I thought I would update you on life in general.
In November, I had a horrible migraine that led to a four day hospitalization. But it did break.
Since then, I have slowly been getting back on track. I have made a few changes in my life- trying to get out more, looking for some part time work, cleaning. Basically, trying to see if doing things a little bit at a time will help. So far it seems to be working!
One of the worst things about migraine and fainting is the fact that it can hit you at any moment, but you still have to muddle through. But I know that I can and that I will.
Go with God,
sconesail
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