KASPER, Pain, and Prejudice

KASPER is now the law of the land in the state of Kentucky. According to the Kentucky Cabinet for Health and Family Services (KCHFS) this law is intended to prevent abuse of prescription drugs by creating a database that has to be checked by any prescriber before they give patients any of the controlled drugs on the mandated list. Their intent was to keep reckless and perhaps even corrupt physicians from writing too many prescriptions for controlled drugs, however the end results may be quite unintended. In fact, the KCHFS makes it clear on their website that the KASPER law is not intended to prevent people who need medication from getting treatment. But that is exactly what has happened. After the very public arrest of several doctors in the state, and the subsequent media attention that garnered, doctors must have felt a cold finger of fear settle across their hearts.

Some stopped writing for any of the controlled medications, opting out of the program and presenting patients with statements that they do not treat pain for any reason. Others still require patients to sign contracts that prevent them from seeking pain treatment elsewhere. So a patient who gets pain medication in an ER will then be in violation of the contract with their oncologist (cancer doctor) and may be denied pain treatment from then on. The law has also had the effect of requiring patients be seen in person before refills of controlled medications can be refilled, but with short limits on the time a prescription of this sort is written for, the result are patients who have to see their doctors monthly for insomnia medication, or ADHD meds for their children.

The sad thing about the KASPER law has been the unnecessary suffering so many people have had to endure to protect addicts from themselves. Rather than focusing on identification and treatment of drug addiction, the state of Kentucky has chosen to focus on criminalizing certain medications and their prescribers. So a patient with a truly justifiable pain cannot get treated for fear they may be an addict, or that the doctor may be arrested for giving too many controlled prescriptions. It means that doctors focus on the use of anti-inflammatories, which are notoriously damaging to the body; increasing cardiovascular risk factors and taxing the liver and kidneys. Studies have shown a mild narcotic is much safer for the elderly, or those with kidney damage, than NSAIDS, yet again, the law has precluded the rights of patients to safe and appropriate care.

People are suffering; mothers with breast cancer, fathers with brain tumors, and children with broken limbs are all being denied adequate pain control. Despite the fact that the World Health Organization has identified adequate pain management as a fundamental human right. Despite the fact that people in actual pain are very unlikely to become addicted to pain medications, or that people who are addicts can just as easily access illegal drugs to meet their needs, or that pain can lead to suicide, disability, and enormous financial loss in society; despite all these things lawmakers have chosen to take the step to make the new law of the land based on not one bit of research based evidence. They have denied that addiction is a disease and needs treatment, and have chosen instead to harm the innocent rather than help the addicted.

Remember this the next time you are in the emergency room and in agony, that they have to obtain your prescription history from KASPER before giving you pain medications. Remember this the next time your dying parent begs for relief, but the doctor doesn't do that in their office. Remember that when a person addicted to prescription medications dies from heroin overdose. Remember, and let the Kentucky Cabinet for Health and Family Services know how this new law has harmed you and your loved ones.

Take these lemons and shove it.

It has been a long time since I posted to this blog. So much has happened, it is impossible to write it all down and not make everyone reading want to jab sharp objects into their eyes. Life has handed me some seriouslybitter lemons in the last twelve months. I could make lemonade as some suggest, but really I want to throw them at someone or something. Anything to vent the rage at what has been taken and suffered this year. Could it be worse? Well, yes of course it could. Should I look on the bright side of life? Well, yes I could. Should I be grateful that I survived? Well, yes I am.

But really, it was bad enough that worse would be pretty damn hard to find. The bright side of life is currently escaping my notice. In fact, I think it left on vacation a while ago. I am glad I survived. But I am filled with rage and disappointment that I had to survive this at all. People say I was so lucky they found the clots, so lucky I had such an amazing surgeon, so lucky I didn't die. They don't say how unlucky it was to have those two enormous clots in my heart, sitting side by side, biding their time, killing me by their sheer presence. Or how the surgeon who put the port in that caused the clots should never have put the line into my heart. Or that it took being near death for them to even look at me as anything other than just a chronically ill person who just got sicker. No one says what I hear in my heart, which is that I could have, would have, should have died but for asking for the one test that saved me.

The truth is that I am a disabled woman. I am overweight. I do not work. My value is low in our society. That extends to attitudes in health care. These are not specious assertions, they are supported in plenty of medical research. So yes, I am happy I didn't die, but so sad that I was dying, and would have been allowed to die by the medical community I rely upon. I look at the ragged scar on my chest, the one that transects my sternum, the one that was left to remind me that I cannot trust my care to anyone ever again. It is to remind me how close I came to being killed by apathy and disregard.

So for all the people out there with chronic disease, remember you are a human being with value. Be your own advocate. Ask for that test before it becomes too late. Demand that treatment before they forget you even exist. And know that you are something wonderful, a living breathing part of the universe, a person who loves and is loved, and never let the world forget it. Never let them give you lemons, and tell you that is the best you can get. Demand the whole damned lemon-meringue pie.

Adaptation

If reality is perception, then that reality is ever changing, fluid in the face of an inconstant world and altered perceptions. Does blue still exist for the blind man, or music for the deaf person? My world has shrunken to a small reality, the extent of my own perceptions the walls of my home. Does that change the world outside, or does it change me so that I no longer know that world. I know this is temporary, that this too shall pass. Still the reality I had created for myself has shifted again, as my body changes and finds new ways to hold me captive. How does one adapt to a reality that is less than the one they had already come to accept, one that requires greater sacrifice and loss? Adaptation, that is what. I change my perception, I stop seeing and hearing the defeat, I listen for the positive and choose to hear it alone. I seek to change my perceptions, and by doing so, change my own reality. We cannot change our bodies, we cannot control the disordered nervous system, or mend the invisible wounds. But we can control how we feel and think about it, whether we let it destroy us, or whether we choose to stand strong and persevere in spite of our physical states. Our minds have to be stronger, our spirits stronger, and in the doing so, our reality becomes more than our bodies.

Yeah, the dog can come in.

I was confronted the other day in a grocery store by an older man in an electric scooter. He yelled at me for having a dog in the grocery store. Needless to say I attempted to explain that the dog was a service dog, and therefore, legally entitled to be in the store. He wouldn't hear it and declared that he was calling the manager. I told him he was more than welcome to do that and walked away. Several other patrons had come to my defense. Kind people who tried to explain to him that she was allowed to be there. It made me smile to know that so many people were aware of the laws regarding access for service animals. However, the irony was that the person who was so vocal appeared disabled himself. Which got me to thinking, how is this man so unfamiliar with the laws that apply to those with disabilities. It has occurred to me that while I am physically impaired, I am still able to learn and adapt. I can look online and find information on laws and my civil rights as a disabled person. Perhaps this man was unable to do the same. I can certainly say that they do not hand you a user's manual on how to be disabled. There is no brochure "welcome to the disabled world" or orientation to the wonderful world of impairment. So how do we ensure that people not only know their rights, but know how to access resources that can improve their lives? Education is the key. Perhaps in addition to the insurance information or benefits summaries, Social Security could include information on civil rights and disablities. For now though, I had to settle for walking away from someone who was angry and intolerant. But as I walked away, shocked at the man's hostility, all I could think was... hey that guy really needs a service dog.

Florence

Florence Nightingale is often referred to as the mother of modern nursing. She was an innovator, a problem-solver, and a realist. She saw what needed to be done, and set about doing it. When she was done, she had taught an entirely new way to provide nursing care to patients. Her focus was on the basics, cleanliness, good nutrition, and discipline.

What most people don't know about Florence is that she was disabled by a chronic illness. She returned from the Crimean Wars devastated by typhoid fever. She never recovered. In fact, she spent the rest of her life almost entirely in her home in Britain. She changed the world from her bed and drawing room.

It is a lesson we can take to heart. Florence was priviledged and wealthy, able to rely upon family, friends, and servants to assist her through her illness. But in comparison, she has so much less than we do today. Without the benefit of the internet, phone service, or the television, she was able to develop and communicate an entirely new method for patient care. What changes can we bring to the world, strengthened by our connections and social media as a tool to share great ideas? Think of the Florence, living with illness, and her accomplishments, and know that greatness is not in the body, it is in the mind.

The Tail-Wag of Eternal Optimism

My service dog Lyla has taught me lesson in the past two months. As I have struggled with physical obstacles and sadness over loss of function so fiercely fought for, I have tried to remember that there is always hope. When Lyla lays beside me day and night, there even when I am at my worse, she always seems to hold out hope that today will be the day we will go out again. She hopes that maybe, just maybe, I will feel well enough to throw her frisbee or toss her ball. She never, ever gives up hope. On dark days of total orthostatic intolerance, she gives me a look with her big brown eyes and a tiny wag of her tail. I call it the tail-wag of eternal optimism. And isn't that exactly what dogs are? The eternally optimistic? They know you will drop food eventually, want to go for walkies one day, and give in to the urge to play with slobbery toys at some point. It is a lesson to live by, that there is always some reason to hope, some reason to be happy, and some reason to wag your tail.

Let the Torture Commence

The doctors at Vanderbilt often are ahead of other centers on research in POTS. However, this summer they were usurped by a doctor in Texas who did some fascinating research into primary POTS patients. These patients (to my understanding only 19 which is a small sample size indeed) were all young women (with maybe a man or two for good measure) who had adolescent onset POTS. In many cases, POTS strikes young women in their teen years following puberty and perhaps some viral or bacterial infection. The theory has been that these teens have a primary form of POTS as a result of deconditioning or a partial dysautonomia. The study done in Texas showed that, in actuality, these young people had small hearts that produced inadequate stroke volumes.

What does that mean? Well, stroke volume is the amount of blood your heart pumps out into the body with each beat. This amount multiplied by the heart rate creates a number called cardiac output (ml stroke volume X bpm heart rate= cardiac output). Cardiac output is therefore the amount of blood pumped by the heart every minute. As the stroke volume decreases, the body increase the heart rate to compensate and maintain a normal cardiac output, hence the hallmark tachycardia of the POTS patient.

It was also observed that for whatever reason, these young women also had lower blood volume than normal. The study was fascinating, in that is found a clear and measurable deficit in stroke volume and blood volume. But the researchers did not stop there. They wanted to show a way to change this state in their patients. And so they used recumbent exercise in the form of a rowing machine, to recondition their patients. They also found that for these young women, the exercise helped them to increase their blood volume (although there is no accounting for outlying factors such a fluid intake) and improve stroke volume. We all know that the more fit an individual is, the more efficient the heart works. This study capitalized on this concept, by reconditioning the patients in a manner that was tolerable for the patients (difficult to do for people whose heart rates are miserably high).

This study offers great hope for many POTS patients, but comes with several serious caveats. One, the sample size was small. Two the sample size was limited to those who were young and had a form of POTS that is poorly understood to start with. There was no sample for those with other forms of POTS, concurrent disease and disorders, or secondary POTS. These were otherwise healthy participants, with a clear pathophsyiological abnormality, and a clear treatment option. Reality is never that controlled, therefore these results cannot be generalized. But worse, they negated any sense of respect for their work from the POTS community at large by carelessly referring to their newly identified syndrome as "the Grinch syndrome" (so called because of the small heart). It is hard to take any scientist seriously who relates you and your condition to a Dr. Seuss character. Still, this information could be helpful to some.

In my, I was willing to try, and so investing in a small rowing machine for home use. After looking at the box on my floor for two months while my Hickman insertion site healed, I finally assembled it today. Well, in all honesty a friend of mine did it while I looked on and added comic relief. When it was completed, I sat on my new machine with anticipation. Then I flailed around on the thing for a few minutes while I tried to coordinate my motions enough to make the thing work. Once I figured it out, it was surprisingly easy. Or so I thought.

After a few minutes I was not only out of breath, but my heart rate was 180 and my muscles were burning. I crawled off with jello legs and sat nearby while my friend easily did three times the work. I was actually rather impressed that I did it at all. But within a few hours, my pride was quashed by the burning pain my shoulder (never a great joint that has nagged me for years now) and the movement of cramps running up and down my back muscles. It was charming. Still, for me it was a revelation. Is this something that I can truly do? It was hard when doing it, and it would seem that can build up to more slowly without the orthostatic challenge of an upright exercise. So although my body hurts madly, I feel a little bit of hope again. And that alone is worth the trouble. :)