Getting out of the Ball
Sometimes I find myself curled up in a ball and I need to get out! This is probably the hardest thing to do- I basically have to force myself and say- "OK, time to get up NOW!"
You see pain and fatigue are great robbers. They rob us of time, energy, and life. Suddenly, you look around and realize that another few hours or another day and another event ha passed and you were curled up in pain- fighting the battle and the time has gone. While we are fighting, life goes on around us.
Then I try to catch up and find myself three steps behind and this happens too much. Then it gets harder to catch up and you don't know what to do. The only thing you can do is force yourself to stretch to get out of the stress/pain/exhaustion ball and try to catch up. Some days you win, some you lose.
Sometime it feels like there isn't a reason to get out of the ball- it is easy- but you have to do it, so you do. You stand up.
Take a walk. Try to catch up and try to make life worth living again. It won't be easy. It never is. But one day, the sun will shine and you will catch up. Life will be better.
Wednesday, January 27, 2016
Thursday, January 21, 2016
They say that the dragons are dead
No more knights are needed to chop of the heads of the
beasts
That terrify the village. But I say they are wrong
We will always have dragons
And we will always need heroes to sing of in the winter
The fights are different
The battles change
There is technology. Who needs a knight in the age of tanks
and missiles?
But the men and women who wield it for us are there.
There has to be a chest to wear the breast plate,
There has to be a brain to guide and
There will always be underdogs
Warriors who fight.
They are not just found on the battlefields.
These soldiers aren’t just strong young warriors
These soldiers are young, old, brave, and bold
And the battles they fight are small
Sometimes it is just the battle of rising each morning with
hope in your heart.
Or standing after you have been felled ten times- long after
sane men would leave the field
It is fighting pain while smiling at a friend and not
letting her see your pain
No one would ever know I am such a person
Some may notice due to my ever faithful friend, my war dog.
But most have no clue the battles fought with pain
Yes, the physicians and wise men and women may be the
generals
But we are the ones who fight.
Every day I look for just one thing in the battle- the will
to go on
The will to fight, the will to win, the will to smile, the
will to not fall here
I fight for life.
Sometimes it is small and far away
But on other days, I glimpse it
And I know that one day
I will stand on the far shore.
I will receive the sword from the enemy
And I will give the sword to God I hope to hear the words we
all long to hear
“Well done, good and faithful servant. Come sit with me and
rest and live, my child.”
Saturday, January 16, 2016
New Year
I have not fallen off the face of the earth. It has been a strange and difficult few months. This year, I hope, will be better than last! I'm writing more, just not on the blog. I have resolved to post more and to work harder on the children's book about service dogs. I may even post of my newer ideas or stories here!
I have not fallen off the face of the earth. It has been a strange and difficult few months. This year, I hope, will be better than last! I'm writing more, just not on the blog. I have resolved to post more and to work harder on the children's book about service dogs. I may even post of my newer ideas or stories here!
Friday, June 19, 2015
Charleston
In the year of our Our Lord 1685, King Louis signed the
edict de Nantes
And so the protestants left France. They fled to England and
then to Carolina
In their quiet conquest, these Hugenots founded Charleston.
There they were free to build and practice their own
religion.
And in fifty years, they built the most beautiful churches
in this country
St. Phillips, still keeping history alive.
St. Michael’s they built just to show the world they were
masters now.
The Hugenot Church, and that great and silent structure- St.
James, forgotten but watching over its charges on the Santee.
In these places, all
came together.
Rutledge- signer of the Declaration of Independence
Pinckney, whose most famous daughter brought indigo to the
shores
Where rice was grown and the frontier kept by such
adventurers as Barnwell
In the churches, all came together.
Those who labored, and were of a different race were there,
too.
But they learned and established their own community, their own
church.
Yes, there was fire and war and tragedy.
But the churches still stand.
The descendents of these builders still stand.
On Sunday, you enter the church and see them- old and young,
black and white
The churches are full and vibrant.
But on this Sunday, the bells will ring in unity for a
tragedy.
For on Wednesay, a deluded soul- perhaps one of the devil
himself
Broke the great peace.
He came and listened. While they spoke the words of Christ,
and called him to listen
He did not hear the words of the Lord.
The words that said, “Come unto me and rest. Come and you
will have peace.”
Instead, he did the unthinkable.
He broke the peace, or so he thought.
But he was wrong.
On Sunday, the bells of the churches will ring together in
harmony.
St. Phillips, St. Michael’s- the church named for the
fighting angel, the Church of Grace,
And every church bell in the city-for color doesn’t matter
to God
And at Emmanuel- named for the God who became man and who
still dwells with his church,
He will see no discord.
Instead, for a moment, the bells will ring.
With one voice, the people and the city will be silent and
hear the bells.
And in Emmanuel these words will be spoken:
“I am the resurrection and the life. All who live and
believe in me shall not perish.”
And the souls a corrupted soul sent to Christ will be at
rest.
And in the churches, you will not hear the songs of
lamentation,
You will hear the words and songs of Easter- of the man who
conquered death.
The words of resurrection will ring loudly and long.
And on a distant shore, they will be heard.
Saturday, June 6, 2015
Help: The Hardest Part of dealing with this disease
Help- The hardest part of living with a chronic disease
It has been a while since I last posted and I find myself dealing with a new diagnosis- severe anemia. I will be getting Iron infusions once a week for the next eight weeks- not the way I envisioned spending the summer. Right now, we are still trying to figure out the cause and currently treating the symptoms.
This new diagnosis is, well, kind of scary. It is unlike dealing with either migraine or fainting. Anemia makes you tired. You forget things and it has become harder to do things. I also have to deal with the fact that- for the first time in years- my parents seem terrified.
I can put up a great front with migraine-even in terrible pain. I can smile through pretty much anything. Take the medications, talk to others, distract myself when it gets bad and deal with the bad ones. I rarely ask for help. Indeed, when I was in college, my friends would drag me kicking and screaming to the hospital if needed. I also learned that college students will do anything for food. "Take me to the ER, I will buy you dinner," worked well. Of course, I knew that most of them would have helped even without that incentive. Still, I hated asking then.
When the fainting began, most of these tricks worked and still do. My biggest problem is transportation. Fortunately, I have been blessed with excellent room mates, good friends, and family who has been willing to help in that area. Despite this, asking for help and realizing that I needed help are the two most difficult parts of dealing with this disease.
So, on to the topic of this post- asking for help.
No one likes to ask for help. For most people with a chronic disease, it is close to admitting that the disease is winning- that we have lost a battle.
The next problem is this- who do you ask for help? Keep it simple. I've learned that if I need to run to the grocery store, that can be easily accomplished. It is much easier, if you are already out with someone- "Could you run by the store on the way home?" This way, it is done during another outing and you don't have to go through the horrible phase of asking.
I have learned to make it worth their while- offer to pay for lunch or something. Try to make it pleasant for everyone. This makes you feel less like a burden and also makes them feel good.
Transportation is fairly easy. Other things are a lot more complicated.
For example, many people will say, "Just let me know if you need anything!" If a close friend has made this remark and you ask, do not be surprised if you are turned down. Good friends will come through, but this remark places everyone in a tough position. You then have to determine what falls in this category- does this mean that you could call on them if you need to get to the doctor, if you need company, or are they just being polite?
I'm left making multiple mental calculations on who I can ask for help and then what help can I ask for. Transportation, company, help in other ways.
If you are in position to offer help- be specific say- "I'll be glad to take you if you need to go." "If you need to talk, just call." Theses things make everything easier.
You see, many of us who have chronic illnesses learn to make sure that no one knows exactly how bad we feel or if we need help. This is particularly true if you are young and have an invisible illness. I can't count the number of times I've smiled through pain, made sure that stores knew I would not sue them if I fainted assuring them that I really was ok. Many of us go out of our way to look and act normal.
I think it boils down to this- if you offer help, you may eventually be asked to help. Also, if you mean it, be specific.
Go with God.
This new diagnosis is, well, kind of scary. It is unlike dealing with either migraine or fainting. Anemia makes you tired. You forget things and it has become harder to do things. I also have to deal with the fact that- for the first time in years- my parents seem terrified.
I can put up a great front with migraine-even in terrible pain. I can smile through pretty much anything. Take the medications, talk to others, distract myself when it gets bad and deal with the bad ones. I rarely ask for help. Indeed, when I was in college, my friends would drag me kicking and screaming to the hospital if needed. I also learned that college students will do anything for food. "Take me to the ER, I will buy you dinner," worked well. Of course, I knew that most of them would have helped even without that incentive. Still, I hated asking then.
When the fainting began, most of these tricks worked and still do. My biggest problem is transportation. Fortunately, I have been blessed with excellent room mates, good friends, and family who has been willing to help in that area. Despite this, asking for help and realizing that I needed help are the two most difficult parts of dealing with this disease.
So, on to the topic of this post- asking for help.
No one likes to ask for help. For most people with a chronic disease, it is close to admitting that the disease is winning- that we have lost a battle.
The next problem is this- who do you ask for help? Keep it simple. I've learned that if I need to run to the grocery store, that can be easily accomplished. It is much easier, if you are already out with someone- "Could you run by the store on the way home?" This way, it is done during another outing and you don't have to go through the horrible phase of asking.
I have learned to make it worth their while- offer to pay for lunch or something. Try to make it pleasant for everyone. This makes you feel less like a burden and also makes them feel good.
Transportation is fairly easy. Other things are a lot more complicated.
For example, many people will say, "Just let me know if you need anything!" If a close friend has made this remark and you ask, do not be surprised if you are turned down. Good friends will come through, but this remark places everyone in a tough position. You then have to determine what falls in this category- does this mean that you could call on them if you need to get to the doctor, if you need company, or are they just being polite?
I'm left making multiple mental calculations on who I can ask for help and then what help can I ask for. Transportation, company, help in other ways.
If you are in position to offer help- be specific say- "I'll be glad to take you if you need to go." "If you need to talk, just call." Theses things make everything easier.
You see, many of us who have chronic illnesses learn to make sure that no one knows exactly how bad we feel or if we need help. This is particularly true if you are young and have an invisible illness. I can't count the number of times I've smiled through pain, made sure that stores knew I would not sue them if I fainted assuring them that I really was ok. Many of us go out of our way to look and act normal.
I think it boils down to this- if you offer help, you may eventually be asked to help. Also, if you mean it, be specific.
Go with God.
Monday, February 9, 2015
Chronic Pain and media
During the past week, I have read two very interesting pieces concerning chronic pain.
One was an op/ed piece entitled "My Chronic Pain is not a Crime." You can read the link here: Chronic pain is not a Crime! The article truthfully describes the problems of pain patients and their physicians.
The second piece simply makes me mad. You can read it here: High prevalence of pain medication.
I understand that there is a problem with prescription drug abuse in this country. However, I do not believe that treating pain patients or doctors like criminals is going to stop the problem.
Chronic pain is a horrible thing to live with. I do not know a single pain patient who wants to be in pain. Believe me when I say that I would much rather be running around, doing something fun, than stuck inside in horrific pain from another bad migraine. Most of us would give our right arms not to have to suffer or deal with the pain and the stigma that goes with it.
Yes, many people who are on disability due to painful conditions take some medication for pain. This might be due to the fact that the disability which prevents the patient from working is, well, painful. It does not mean that the patient is addicted. It does mean that the patient is trying to lead as normal a life as possible. If you have a painful condition and are a parent, you want to be there for your children or your family. It is not a crime.
The article also stated that women are "at greater risk of becoming chronic opiod users than men." This isn't true. Women may be experience more migraines than men do, but on the whole, I'd say it is about equal.
One would not say to a diabetic- "oh that is too much insulin, you have to cut back." Instead, one would trust the endocrinologist and the patient to work together and get it stabilized so the patient wouldn't have more problems. The same is true for most other medications. You get sick, you go to the doctor, and you get treated, and hopefully you get better.
Unless, of course, you are a pain patient. In this case, you go to your GP, who is afraid to prescribe pain medications due to increased pressure from the DEA, and he refers you a pain specialist. The pain specialist does an exam, confirms the fact that you are in chronic pain, lays out options and then decided how to treat you. If you are prescribed any form of opiate, you will have to sign a pain contract. This means you will agree not to obtain any narcotics from another dr without consulting your pain doctor. You will also agree to random blood tests. And everything else he suggests.
This situation is ridiculous. Yes, some abusers may get through. People in pain generally want to be out of pain so they can lead relatively normal lives. Still, pain control, just like any other form of medication, should be between the doctor and the patient. No one should be condemned for it.
Pain free days
sconesail
During the past week, I have read two very interesting pieces concerning chronic pain.
One was an op/ed piece entitled "My Chronic Pain is not a Crime." You can read the link here: Chronic pain is not a Crime! The article truthfully describes the problems of pain patients and their physicians.
The second piece simply makes me mad. You can read it here: High prevalence of pain medication.
I understand that there is a problem with prescription drug abuse in this country. However, I do not believe that treating pain patients or doctors like criminals is going to stop the problem.
Chronic pain is a horrible thing to live with. I do not know a single pain patient who wants to be in pain. Believe me when I say that I would much rather be running around, doing something fun, than stuck inside in horrific pain from another bad migraine. Most of us would give our right arms not to have to suffer or deal with the pain and the stigma that goes with it.
Yes, many people who are on disability due to painful conditions take some medication for pain. This might be due to the fact that the disability which prevents the patient from working is, well, painful. It does not mean that the patient is addicted. It does mean that the patient is trying to lead as normal a life as possible. If you have a painful condition and are a parent, you want to be there for your children or your family. It is not a crime.
The article also stated that women are "at greater risk of becoming chronic opiod users than men." This isn't true. Women may be experience more migraines than men do, but on the whole, I'd say it is about equal.
One would not say to a diabetic- "oh that is too much insulin, you have to cut back." Instead, one would trust the endocrinologist and the patient to work together and get it stabilized so the patient wouldn't have more problems. The same is true for most other medications. You get sick, you go to the doctor, and you get treated, and hopefully you get better.
Unless, of course, you are a pain patient. In this case, you go to your GP, who is afraid to prescribe pain medications due to increased pressure from the DEA, and he refers you a pain specialist. The pain specialist does an exam, confirms the fact that you are in chronic pain, lays out options and then decided how to treat you. If you are prescribed any form of opiate, you will have to sign a pain contract. This means you will agree not to obtain any narcotics from another dr without consulting your pain doctor. You will also agree to random blood tests. And everything else he suggests.
This situation is ridiculous. Yes, some abusers may get through. People in pain generally want to be out of pain so they can lead relatively normal lives. Still, pain control, just like any other form of medication, should be between the doctor and the patient. No one should be condemned for it.
Pain free days
sconesail
Sunday, November 2, 2014
The beginning- How this all started
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.
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.
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