I rarely comment on political or policy issues, but the recent FDA guidelines demand a response. They are absolutely terrifying and I believe that they hinder medicine rather than help anyone at all. I am furious. 

http://www.usnews.com/news/business/articles/2016-03-15/cdc-guidelines-aim-to-curb-painkiller-prescribing

I understand that there is a prescription drug problem in this country. You will always have some people who are going to abuse something, but I do not think that restricting access to pain control is an answer. At one time, Alcohol was banned in this country. Still, many people found ways around this. It simply drove drinking into the shadows for a few years. It even led to the invention of cocktails to get rid of the horrible taste of bootlegged alcohol. It did not work then, and it will not work now. Prohibition did not stop alcohol consumption. It is clear to most people that the roaring twenties were well lubricated.

Under the new guidelines, doctors would prescribe painkillers only after considering non-addictive under the new guidelines, doctors would prescribe painkillers only after considering non-addictive pain relievers, behavioral changes and other options. The CDC also wants doctors to prescribe the lowest effective dose possible. And doctors should only continue prescribing the drugs if patients show significant improvement

In many ways, this flies in the face of a principle sacred in medicine- Doctor-Patient confidentiality. Not only does the patient have to prove that they are in chronic pain. Doctors would not be able to prescribe without sending the patients to more doctors for therapies that are not covered by insurance. In addition, they would have to justify the reason. Doctors should be able to prescribe medication without fear of being prosecuted or losing their license. No one says to a diabetes patients- you are taking too much insulin. “You can only use this amount- it doesn’t matter if you have a seizure due to low blood sugar- you had it because you used too much insulin.” This is essentially what is happening to pain patients right now. A patient must have proof that the pain is chronic, try alternate therapies, sign a pain contract, and beg the doctor for treatment. The doctor is now to terrified to prescribe tome medications and sends you a specialist. The specialist could then decide if you warranted pain medication. Then, you have to go back to the pain doctor and hope that your medication will be there.

These guidelines do not just effect patients in chronic pain, but those in acute pain as well. For short-term pain, the CDC recommends limiting opioids to three days of treatment, when possible.

So if you are in the hospital for surgery or have a broken arm, you might only be given pain medication for a few days post op or event. This, more than anything else, is just wrong. If they can only prescribe for three days, the patient will be in a great deal of pain and this may actually hinder the healing process.

It will condemn some chronic pain patients to a life of pain. Many pain patients learn to manage their pain and are able to lead a relatively normal life. These guidelines would dramatically change this and will have an adverse effect on the lives of many. Indeed, some chronic pain patients would be disabled due to pain. This would increase the number of people on disability and thus hurt the economy.

I really, really hope that someone starts to see sense.

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.

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.”

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!

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.

 

 

 

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.
 

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