Category: changing health care

Qualities of a good nurse – go!

Posted on by Grayson
Not everyone in the chronic illness world is a fan of The Fault in Our Stars. Is it perfect? Nope. Is it improbable? Yup. But hey, it’s more probable than The Notebook or other books with white kissing couples on the front.
The movie was great in my opinion, but I read the book first and would encourage everyone to do so. One of the big reasons is for this deleted scene I’m about to show you – kids talking about problems in health care.
(Watch from 0:40 to 1:29 for the more relevant bit)

Nurse to the newly blind Issac: “You’ll get over her Issac. It just takes a little bit of time. You’ll see.”
Issac: “Is he gone?”
Hazel: “Yeah,”
I: “Did he seriously just say ‘you’ll see’?”
H: “Yes he did.”
I: “Nice.”
H: “Qualities of a Good Nurse: Go.”
I: “1. Doesn’t pun on your disability, that would be the first one.”
H: “2. Gets blood on the first try.”
I: “YES. Oh man, I’m always like ‘dude, I’m not a voodoo doll. Stop poking me.'”
H: “3?”
I: “No condescending voice, that would definitely be 3”
H: “Ugh. You mean like, ‘Hi sweetie I’m going to poke you with this extremely sharp object. You might feel a tiny little pinch.’”
I: “Exactly. Good voice.”

Let’s add to this list of qualities a good nurse has:

  1. Doesn’t pun on your disability
  2. Gets blood on the first try
  3. No condescending voice
  4. Has empathy and compassion
  5. Respect for all patients
  6. Attention to details like, you know, what you’re allergic to
  7. Actually listens to you and takes down what you say
  8. Can do small talk without seeming too annoying/annoyed
  9. Isn’t afraid to integrate technology into taking care of you
  10. Appreciates patients who may know more about their condition than they do
What would you add to this list?

Tips & Tricks for Docs and Other HCPs

Posted on by Grayson

I was recently asked for my thoughts on training doctors. It’s a subject that’s been on my mind lately anyway, thanks to the #MedX chats on twitter & google plus. Here are some of the things I wanted to share.

I think one of the most important things for docs to understand is that chronic patients don’t come looking for drugs. We come looking to get relief and help. If a chronic pain patient walks into your practice and says they need higher pain meds, doctors need to think about how much courage that patient needed in order to bring it up as well as how high that person’s pain levels must be. There is this almost automatic shudder when these things are mentioned and patients, especially younger females, are treated as though many things are all in their heads. By doing that, you further ostracize a patient, which just deteriorates their mental health to a dangerous point and also makes it less likely that they will follow their medication or other treatment regimens.

Really listening, instead of hearing, makes a huge difference. I suffered from fibromyalgia pain for years before Kathy (my rheumy’s NP) really listened to my symptoms to find it. My previous rheumy thought I had it, but never told me or ran any tests. I got to suffer through that pain, which ended my graduate school career and forced me to change jobs, while someone could’ve treated it if they only listened and cared enough to discuss it with me.

Having ideas on how to deal with the day-to-day issues will help immensely.

Read up on journal articles about transitioning care for juveniles who have recently graduated to adulthood. There are often things we go through that are different than adults who fall ill. Mentally, things are darker because we may have never been well enough to participate in things. Physically, things tend to be worse for us as well due to wear & tear, and the time damage has had to occur.

Treat us as your partner in the battle against whatever diseases you work with. Patients who feel as though they can work with their doctors instead of being told what to do, often do better than the others. Be receptive to new ideas, even if you think acupuncture may just help due to placebo. If no harm could be done, encourage your patient to find things that will help them – and learn to recognize body language that suggests people are having a harder time mentally or physically. It really helps in protecting patients from their own minds when you can know there is something wrong and engage them on it.

What would you share?

On the DL: My two days listening to the Dalai Lama

Posted on by Grayson

Many of you may know that my bachelors degree is in religious studies. I’ve always loved different religions but never really agreed with one myself until I took a course my sophomore year of college on Asian religions, which is the course that made me a religion major instead of a chemistry or math major. I had been doing meditation and yoga since I was 12 (thanks Seventeen magazine!) to help with my pain but I only knew vague bits of the religions that made these practices common.

Buddhism is a wonderful religion that, much like Christianity and Islam, has different sects and different focuses depending on where you are and who you learn from. The professor I had for this class was one of my favorites and the next semester I ended up taking two or three classes in a row with her. She herself practiced Buddhism and Christianity together – something easy to do as most schools of Buddhism don’t really address at all the notion of gods. It’s not that Buddhism is atheistic, but instead it is non-theistic. Many call Buddhism more of a philosophy than a religion, and it definitely can be both.

Buddhism rests upon the Four Noble Truths:

  1. Life is suffering, plain and simple
  2. The origin of that suffering is attachment – cravings, wants, material goods, etc
  3. We can end that suffering through attaining Nirvana, or freedom from the cycle of rebirth (samsara)
  4. We end the suffering and reach Nirvana through the middle path, a balance between being over indulgent and an ascetic. This path is outlined in what is called the Eight-fold Path (right understanding, right thought, right speech, right action, right livelihood, right effort, right mindfulness, and right concentration).
Many people I know with chronic illnesses find Buddhism extremely attractive, given that the first notion of this religion is about suffering and how it is so prevalent in our lives. We can’t escape the suffering, and so there is a huge attraction to the notion that if we do work hard enough we can lessen and eventually end that suffering.
During my studies on Buddhism, I sort of fell in love with the Dalai Lama (don’t know who he is? Check out this link). He talks about how compassion and love are at the center of all religion and how we all just want to be happy and not suffer. This isn’t from a primarily religious perspective that he says these things either – what he wants is for each of us to treat each other with compassion and love and to make the world a better place. For him, Buddhism is the tool he uses to promote that but he doesn’t downgrade other religions and believes that they can be just as beneficial – that it merely depends on what religion helps you to bring compassion into the world and feel fulfilled. He believes in humor and the ability of laughter to heal and add to our lives. Needless to say the man laughs a lot and his laugh is more infectious than a baby’s laugh. I also feel the need to add that Michael Palin met him once on one of his travel shows he did after Monty Python, only to have His Holiness be more excited to meet Michael than Michael was to meet him! His Holiness said something along the lines of how a huge part of why he had a satellite dish was not to keep up on the news but so he could watch Monty Python reruns on BBC. He has got to be the coolest person ever.
So a few months ago when I learned that His Holiness would be in the city I live for two days giving speeches, I freaked out. When I was done half crying and jumping up and down like a four-year-old, I got tickets for both days.
The first day His Holiness spoke on a poem written by a fellow Buddhist after an intense meditation session called In Praise of Dependent Origination by Je Tsongkhapa. He was only supposed to talk for two hours, but ended up talked for almost three and barely at the end touched on this poem. I definitely didn’t mind though! He spoke so much of the time about Buddhism as a religion, but also as a philosophy and what it means to have compassion for others. I honestly don’t have many notes to share with you from that day because I was just so in awe of how lucky I was to see him.
The next day, he spoke as a part of a panel on global health and sustainable well-being as a part of the Global Health Institute from the University of Wisconsin-Madison. There were economists, people with the WHO, psychologists, etc. I took a ton of notes there, both because I think the shock had worn off and because I felt like I wanted to share some of the information from this panel with you all. I’ll indicate the person’s name and then in later spots their initials from whom the information came. The Dalai Lama will be DL for example.
  • Richard Davidson: Stress decreases growth of new brain cells and inhibits connections between cells
  • RD: There was a 2012 study on 2500 health plan members over the span of one year. For each increase in well-being an individual was less likely to go to the hospital due to an illness and had overall better health. Well-being was measured as emotional – self-respect, etc. These people spent on average $1185 a year on healthcare as opposed to those who did not have these improvements, who spent $5172 per year on average – two and a half times the annual expenditure on healthcare.
  • Don Berwick: Despite what our senses would tell us, the best health is in places spending less money on health care.
  • DB: Often we believe that more is better – with healthcare that is often false. We focus on more technology which is so costly and does not help as many as focusing on other areas might. We falsely believe that the way to get healthy and stay healthy is through the health care system. Environment and our own actions are 400% more of an influence on our own health than the health care system. We almost always separate mental health from physical health also and we just cannot do that – our minds are so integral to how our bodies do that these two are just too intertwined to really separate.
  • Ilona Kickbusch: People create their own health and the health of others in their community through support.
  • IK: We at the WHO are seeing an epidemic of non-communicable diseases (i.e., chronic illnesses).
  • IK: In order to move forward and improve we have to focus on the past and engage in reverse innovation – looking to countries and communities with more communal views on health.
  • The highest obesity rates are in the United States for those in poverty. However, the WHO is seeing obesity rapidly rising in developing countries due to the lower costs, longer period of food preservation, etc, of junk foods.
  • Richard Layard: The British government’s new focus officially is the well-being of people in the nation. Most departments have a well-being section focused on the employees and how to help those concerned with that field.
  • RL: Income only explains 20% of the variation on who is happy and who is miserable according to studies. Instead the most important factors include family and community relationships, and mental and physical health.
  • RL: Most chronically ill people develop mental issues caused by their illnesses.
  • RL: According the the workplace wellness alliance, an organization that works with several big and successful companies, up to 40% of disability cases and absences from work are more mental than physical.
  • RL: Only one-third of those with mental illnesses are really getting treatment, and some of that is sub-par.
  • DL: When asked why he thinks so many people assume mental illness isn’t something to be focused on, he said that he believes a lot of it has to do with the societal religious beliefs. The Judeo-Christian tradition focuses on faith not on discussion or action. If you have a problem, you pray and you ask for help and guidance versus making a strong decision based on what you think and what you talk about. In Eastern religions there is a huge focus on you as a person from your overall well-being to actions, etc, instead of just on faith. It is more secular, focused on tolerance and respect for others and yet containing humanistic morals as well. Here in the US secular is almost a dirty word for people see it as removing their morals. Since every person sees his or her religion differently, the best way to combat this would be to focus on really cultivating ethical and moral humanism instead of relying specifically on religion for guidance. If for you religion guides your personal life, that is fine and no one is saying that is wrong but we all need a common ground to stand on not founded on religion because of how it can cause competition, hypocrisy, and hate for some.
For me, attending these two days and having time to think on each presentation was a life changing experience. I began, for example, to be annoyed with children crying during the first presentation. It was already so hard to hear His Holiness due to the noise issues with the venue’s speakers. And suddenly what he was saying about being compassionate got through to me. Instead of being annoyed with these children, I was empathetic towards them – they were bored, tired, warm, hungry, and just wanted to play. Another example is at work there was someone audibly crying last week and having a tough day in the row of cubes ahead of me. I was on a call and couldn’t go check on this person, but I wanted to so badly. I practiced a compassion meditation, breathing in the negative feelings he or she was dealing with and breathing out good thoughts. I don’t know who this person was or why they were having a bad day or if what I did made any difference. But it made me feel like I could do something to help and it calmed the nerves I had for that person. Even dealing with situations I will never be able to change, these two days have helped. Instead of wanting to physically assault idiots I know for their actions, I’m trying to combat their negativity with compassion and voicing how tough it is for me to feel like I am not heard trying to draw compassion from them. It is really hard for me to tone down my anger (being Italian and Irish is dangerous!) but these two days did so much for me. I’m focusing more on the good in my life than the bad – I have my days still and yesterday was definitely one of them, but this is bringing me more and more peace the more I invest into it.

I’ve always flirted with Buddhism as a religion, with the tenets I wholeheartedly agree with, but could never bring myself to really act on those feelings aside from within myself. At one point, the Dalai Lama asked to see who were Buddhists and I half raised my hand until my future sister in law pushed it up higher. So much  of my lifestyle screams Buddhism and I keep not wanting to label myself. Brynne saw it and the Dalai Lama saw it too, so I guess I’m officially a Buddhist. I can’t wait to explore this even more in the next decade than I have in the last.

Thanks for reading!
  • For more on Buddhism, please visit this PBS site, where I found the Eight-fold Path information because I was a little rusty on that
  • Definitely check out Toni Bernhard’s website. She suffers from chronic illness and talks about how Buddhism helps her.

Day 18: The bedside manner police #NHBPM

Posted on by Grayson

Today’s prompt is “I want to change THIS about healthcare.”

There are so many things I wish I could change about healthcare. Golly. The biggest issue – and I think we can agree on this – is dealing with doctors who either don’t listen, don’t believe certain conditions are real, or who don’t think you know enough about your own condition because you didn’t go to medical school.

Unfortunately, right now there is little you can do when you encounter these kinds of docs other than to leave them behind in the dust. Some of us go to free clinics or are a part of programs that won’t allow us to switch doctors. For this bunch, I feel saddest of all. There is really nothing to do aside from perhaps report the doctor to some kind of board or website and hope that it gets investigated.

In a perfect world though, we would be empowered patients and be able to do something!

Imagine a world where, when you get a craptastic doctor or nurse, you could compile all the information from your meetings and submit them to a kind of bedside manner and reeducation police. This way doctors would be reprimanded and reeducated if needed when they step out of bounds, don’t listen to your complaints and troubles, or decide you have a fake disease.

The police would be made up of a combination of patients and medical professionals who, able to see both sides of the situation, are better equipped to pinpoint the problems and get the situation under control.

Wouldn’t it be nice to be a part of a world where you could stop feeling helpless about your crappy docs and really do something?

Day 6: Taking the high road #NHBPM

Posted on by Grayson

I am supposed to write about a time I had to take the high road. This being election day, the prompt seems fitting no?

I could go on and on about why I voted for who I did by tearing down the other main opponent. I could talk about how I vehemently disagree with like everything one candidate does. But I am taking the high road and instead talking about the awesomeness of the man I voted for.

The things that Obama is doing with health care reform really are the major reasons that I cast my vote for him on Friday. A few years ago, I contacted an insurance company in an attempt to get insurance. This had to be like spring of 2008. I was told due to my illness that the insurance through this company would have been about $2,000 a month and – this is my favorite – it would NOT cover anything related to my Still’s… since it’s a systemic disease in all honesty it would not have covered jack shit. When Obama began to run for president, he discussed the issues with preexisting conditions that he had dealt with in his own family. I knew that he would do something, he would right this wrong.

He supports research with stem cells, something that could hold a key for helping us to develop better drugs and even perhaps cure some of these autoimmune diseases. It could be a very exciting situation if it actually would be able to go through with any of the studies here in the US would be able to go through…

I won’t talk about the negative effects on the chronically ill if a person who believes that having an emergency room as health care for the poor is adequate gets elected… I may have just lost the high road. Oops!

I vote my conscience. I think about the things that will affect the people that I know, the friends that I have. What president will be better to help my friends like Sick Mama who is left in an emergency room for hours on hours screaming in pain but no one will help her because of no insurance? Which one will be better for my niece and my sister?

All I know is I have to go pick up a pizza and break open the vodka in the pantry so that I can make it through tonight because damn. As a political science minor, my stomach is crazy on edge.

The Medical World

Posted on by Grayson

It seems to me that people on the outside of the fiasco that is the United States’ healthcare system think that everyone is working fine. Sure, sometimes people have to pay more for care/treatment, but we have a system that works and doctors who do their job correctly.

But the truth is so far from that. Yes, there are doctors who do a great job, who go above and beyond to help their patients. But the vast majority of them seem to either be in bed with pharmaceutical companies or disinterested in the experiences/problems of their patients.

My doctor is nice enough. And he’s succinct, which I really like. But he also is so far removed from what is going on with me and my body often. All I have for pain is 600mg ibuprofen, which half of the time doesn’t work – be that because of the intensity of the pain, the way it makes me sick to my stomach, or the tolerance built up after years and years of taking that as a normal dose. He’s convinced that narcotic pain relievers are wrong. Or, at least, that I need to get them from a primary care doctor and not from him.

If you’re a rheumatologist, you’re probably the only doctor that some of your patients see. Insurance payments and co-pays suck too much to pay double for basically the same amount of care.

Also, apparently my insurance won’t cover my eye doctor appt from a few weeks ago? And I’ve never gotten my full list of co-pay due for past visits to my rheumy. How odd.

But I digress. If you’re a doctor geared specifically to people in horrible amounts of pain, you should probably be willing to help them out a little more with the relief. Just sayin’ the truth.

The system doesn’t work – it’s broken. Programs don’t help those of us who need it the most. And still, we have to listen to people (with more money than at least 80% of the rest of us) talk about the horros of nationalized health care. I don’t care how long I have to wait for an appt, as long as I can get one and actually get the help I need.

/end rant/

News on RA

Posted on by Grayson

Unfortunately, it seems as though the number of RA cases in women have risen. Women are generally more prone to developing RA than men, although there is really no known reason. Within the story featured on Arthritis Today, doctors are grasping at straws and tying this increase to environmental factors such as smoking, vitamin D deficiency, and birth control.

Now for the good news: A new shot developed could potentially cure arthritis. The drug has only been used on mice, and has only been shown to stop arthritis right as it’s beginning. For the mice already affect by RA, it only has slowed the progression of the disease. Still, with a little more research, there’s hope. There’s at least the possibility that, by the time I have children, everyone will be vaccinated against RA.