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!

           

           

       

3.      

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