Sense of Self #AtoZChallenge

Sense of Self     #AtoZChallenge

What is a sense of self? Typically it refers to how we perceive ourselves or in more simple terms it refers to self-image. How does our sense of self influence our lives? How does our sense of self transform when we are suddenly faced with a life-altering diagnosis?

When we are healthy and are able to do things we wish to do, including an occupation where we feel good about going to work each day, our sense of self is easy to identify. We can feel good about our chosen profession. We can feel good about our circle of friends we have built. We can feel good about our family and how close we feel to them.

When we find ourselves presented with a life changing illness or injury, we can face a whole new set of challenges in addition to the present medical situation. Suddenly we may find ourselves facing the very real losses associated with such a sudden change in our health and abilities. We may be unable to work either temporarily or worse yet permanently. We may face fluctuations or even losses of friends and family who are either unable or unwilling to accept our newfound limitations.

When we were able-bodied we often identified with our chosen profession. Without that label, we may struggle to determine who we are without it. Frequently when meeting someone new, one of the routine questions we may face is “What do you do?”. This reference to our occupation can be very difficult for someone who is seeking to identify who they are after finding themselves unable to work.

The key to finding yourself and your newly discovered sense of self is not always a simple one. The most important thing, in my opinion, is to cut yourself some slack! Give yourself some time to adjust physically to your new situation. Give yourself some time to mourn your old sense of who you were. Your injury or illness is not a sign of weakness!

As you begin to adjust to your situation, give yourself some credit on what you are able to do. It is important to recognize those things you are still able to so, or that you have accomplished despite your illness. We are often harder on ourselves than those around us may be. It is time to change this and improve how you feel about yourself. As you adapt to your new life, it pays to focus on the positive things, rather than to dwell on what may be outside of your reach.

As things progress, find things that you enjoy. Find things that make you feel good about yourself. Set goals that are both realistic and attainable that you and your care team can assist you in achieving. This could begin with something as simple as going outside. Enjoy the fresh air! Maybe you previously were a workaholic who spent most of your time inside in an office. Take the time to enjoy the outdoors. Even if you start simply by sitting on your front porch for a few minutes a day.

As time goes on, continue to find the things that bring you joy. It doesn’t matter how small and seemingly insignificant these things may be. No goal is insignificant if it brings you joy or helps you to feel better about yourself. Continue trying to keep things as positive as possible. Each little thing you do can improve how you perceive yourself. Share your experiences with others. Write in a journal so that you can look back and see the progress that you’ve made. This often helps one to keep things in perspective. This is especially true when we feel we may not be making any progress at all.

A true sense of self is often elusive, even to those who may not be facing challenges. It takes effort and time to find a true glimpse into who we feel we are after a major illness or injury. It is imperative that you give yourself the time to adjust and figure out who you feel you are or who you wish to become within the limits of your situation. There is no easy answer or guaranteed steps to accomplish this as it is a variable process based primarily upon your particular situation. There is also no regular time frame in which you must determine the answer to who you feel you are after diagnosis.

Do you have a story about how you adjusted to your new self? Have you found something that helped you improve your own sense of who you are?  Please share with us in the comments below. We would love to hear from you!

Resentment #AtoZChallenge

Resentment     #AtoZChallenge

It is not uncommon to experience resentment when facing a long term illness. Don’t beat yourself up if you encounter it. How you manage the resentment will make all the difference in your ability to work through it. Regardless of whether you resent yourself or think a loved one is feeling resentful towards you, you can conquer this!

When you feel as if you have lost your sense of self due to a chronic illness or injury, it is not at all unusual to feel some sort of resentment. Resentment towards life in general for the hand you were dealt. Resentment towards the person who just walked by you in the grocery store with apparent ease. Resentment towards medical professionals who you feel may be dismissing your symptoms. Or even resentment towards yourself for a perceived weakness in succumbing to whatever challenge you are facing.

Conversely, you could be the target of resentment. Friends may be resentful that you can no longer participate as actively in your friendships and activities. Possibly the family member or loved one that is your primary caregiver is resentful towards you for the additional burden on them. Maybe you feel that your children resent your illness and the fact that you may not be able to participate in activities with them as you once did.

Resentment can take many forms and go both ways. I think the most important tool towards dealing with any perception of resentment is open and honest communication skills. Second to that is the ability to step back and look at the issues surrounding the feelings of resentment as objectively as possible. Often these feelings may be perceived as opposed to real. If they are real, then it is up to you to initiate a discussion on how to change or resolve these potentially devastating feelings. There are no easy answers, but you can work through these feelings!

Do you have a story about feelings of resentment that you would like to share? How do you manage perceived feelings of resentment in your life? Share with us in the comments below!

Pain Management #AtoZChallenge

Pain Management     #AtoZChallenge

In keeping with yesterday’s post regarding the use of opiates in treating pain, I thought for today’s post I would focus on non-narcotic alternatives to address your pain. Please realize that as with everything I write, the things I share are in no way personalized medical advice. You bear full responsibility for any actions you take regarding the information you read here. Furthermore, I suggest that you discuss any idea with your physician prior to implementation.

There are a variety of pain management techniques and tools that one could use as opposed to strictly pharmaceutical options. These alternatives can also be used to complement pharmacologic therapies in order to better manage your pain and hopefully require less narcotic interventions.

Biofeedback, cognitive-behavioral therapy and even psychotherapy are just a few tools that anyone with chronic pain can use to manage their pain more effectively. Along the same line as meditation and relaxation therapy also provide a means with which to retake control of the pain in your life, or at least manage it more easily. Some more advanced treatments that have been said to be effective in pain management are the use of Betar tables, Eye Movement Desensitization and Reprocessing (EMDR) and acupuncture.

While EMDR was originally designed for managing the stress of a traumatic experience, it has been shown to also help with pain management. Realistically speaking pain can very well be interpreted as a traumatic experience. the Betar table uses sound and magnetic waves to promote positive psychological and physiologic change, including pain management.

Gentle forms of physical activity can reduce stiffness and aid in alleviating pain. These can include yoga, Tai Chi, or even some of the low impact martial arts. Pool therapy is very helpful in permitting movement despite painful conditions when conducted in a warm pool. Medical massage can also be extremely helpful in managing pain associated with muscle spasms and many other disorders.

Some of the more controversial techniques to manage pain can include therapeutic touch, reiki, and the like. For the more scientific types among us, techniques such as these can be challenging as we desire to see scientific evidence in the aspect of a cause and effect relationship between a treatment and a cure. We often feel uneasy about things that are both unable to be seen and unable to be understood.

The most important goal of pain management is to find what works for you as an individual. What works for your friend or family member may not work as well for you. No two human beings are exactly alike. As a result, we often respond differently, even if only a subtle way, to the same medication or treatment. Regardless of what others think, find something that works for you, and stick with using it. If you are able to find a regimen of multiple treatment options that work for you, and you can alternate between them to find the best approach to manage your pain and improve your quality of life.

In closing, I would like to share a quick personal experience. Many years ago I was seeing a psychologist who specialized in treating those with severe pain. I was open to trying many things, including EMDR and the Betar table (amazing results!), but for some unknown reason, I drew the line at trying acupuncture. At one visit I was suffering from severe shortness of breath due to pneumonia. As I wheeled into the office he practically begged me to permit him to use acupuncture on me to improve my breathing. I was so ill that I reluctantly told him he could use one needle in each ear, and if it didn’t help he could never ask me again. (He specialized in auriculotherapy, which is specifically the use of acupuncture on coordinated body points in the ear.)

He carefully placed one very thin needle in each ear in what he told me were the lung points. To my complete and utter amazement, within a matter of three to five minutes, I was breathing as if I wasn’t ever even short of breath. I could take a full breath and had no more pain while doing so. The raspy sound of the fluid in mu lungs was incredibly reduced, almost nonexistent. Mind you I had been to my primary care physician just hours before and had refused to go to the hospital, as I wanted to try yet another outpatient course of antibiotics first. To this day I don’t understand precisely how or why it worked, but it most certainly did! As a result, after that, I permitted him to further explore how much acupuncture could do for me, which was a lot!

Unfortunately, acupuncture, as is true with many so-called alternative treatments was not covered by insurance and by itself prohibitively expensive. As life goes on, and he became unable to provide this therapy under the original circumstances, I found myself looking to alternative electronic acupuncture therapies, that while they may provide some relief, they most definitely do not provide the same level of relief that traditional acupuncture uses.

Have you found an alternative treatment that helps you manage your pain? Have you ever experienced something that to your surprise actually helped you better manage your pain? Please share your story in the comments section below. We would love to hear your experience!

Opiates in Pain Management #AtoZChallenge

Opiates in Pain Management      #AtoZChallenge

The debate over the use of prescription narcotics in the management of pain has long been a controversial topic. This topic has come more to the forefront of late as the debate heats up in both the media and the healthcare industry. There are arguments both for and against the use of opiates. In this post, I will share my knowledge and experience as they relate to the use of narcotics in pain management.

I have had numerous experiences with both acute as well as chronic pain. I have, at times, been on extremely high dosages of narcotics in an attempt to manage the pain, at that point chronic and increasing in nature. I was on such a high level of narcotics that it was determined that it was safer and more effective to implant an intrathecal pain pump to dispense the medication directly into my spine.

This required significantly less medication to achieve the same, even better, results. Doing this enabled me to manage the pain in order to undergo intensive physical therapy towards a better quality of life. Eventually, I made the difficult and personal decision to discontinue the medications to remove the side effects and further increase my quality of life.

More recently, I had undergone multiple major neurosurgical procedures in an attempt to relieve a spinal cord injury in my neck. While in the hospital, just a day or two after the surgeries, I was informed by a pain specialist that they would only treat my pain for a maximum of two weeks. After that, I would no longer receive any pain management whatsoever.

After five days in the hospital I was transferred to a spinal cord injury unit in a local physical rehabilitation hospital. While I have become accustomed to managing a great deal of pain in my daily life over the years, I was extremely grateful to find that the rehab hospital was not subscribing to the two weeks and done philosophy dictated by the pain practitioner in the hospital. I spent many weeks recovering from the surgery and performing several hours a day of various therapies in order to improve and ultimately hopefully restore functions affected by my spinal cord injury.

It is now four months post surgery and I’ve managed without pain medication for roughly two months now, by my own choice. I’m not going to lie to you, some days like yesterday are absolutely horrible. It is a personal choice and one that only you and your properly trained healthcare provider can make together after weighing all the options.

Having worked in the healthcare field as well as having been a patient, I will admit that there can certainly be abuse of prescription pain medications. But I do not think that a blanket rule of a set number of days of therapy is the best approach. Pain is an extremely individual issue that should be handled on a case by case basis by properly educated persons. There are many factors that affect pain from the nature of the initial injury to injuries of surrounding tissues and especially nerve damage.

As medical science, the study of pain, and technology improve there are more and more interventions becoming available that can decrease the need for opiates in pain management. However some are infinitely difficult to find, and like nearly all medical treatments, are not without their own risks. Nobody should be forced to live in pain due to stigma, fear of being labeled a drug-seeker, or fear of addiction. There are plenty of ways to mitigate these risks while mitigating at least some of your pain to improve your quality of life. Many times chronic pain will never be relieved entirely, but there are a wide variety of ways in which you can improve your life either with or without the use of narcotic medications.

What are your experiences with the use of narcotics in pain management? Would you  like to share your story with us? We would love to hear from you! Please remember to be respectful as everyone experiences pain differently and we all should be treated with respect. Reply in the comments below.

D is for: Denial to Discovery

D is for Denial to Discovery

A common reaction to any real or potential major change in one’s health or life often begins with denial. Denial of the very existence of said matter. Denial that this could, in fact, be happening to you. Denial that things could even potentially be as serious as even the best case scenario you can envision, not too mention the worst case scenario. Denial is often tied closely to bargaining, depression, and a whole host of other emotions. But once you work through this, and come out the other side, you can begin the process of discovery.

Discovery of what your life will bring with the newfound knowledge of your situation. Discovery of how you will go on, and continue to move forward. Discovery of how you may well be able to live a full and happy life despite, or in spite of, the event you initially felt would end life as you know it. Discovery can be a huge motivator in pushing through the challenges in front of you.

It doesn’t have to be a life-altering event or illness. Maybe you have a boss at work that is making your life a living nightmare. So much so that you don’t even want to get up to go to work each day. By determining what is important to you, and what you can do to impact the effects of any challenge, you can begin to discover how to conquer that challenge. Is this boss someone you can strike some sort of happy medium with to coexist? Or do you feel it is time for you to move on and find another job? By simply answering this question for yourself, you can begin to discover what you will need to do to move through, and eventually past this challenge.

In the aspect of a healthcare crisis, once you discover that you are still the same person, with the same qualities that made you a good person to start with, you will begin to find your way through. I’m not going to lie to you, it may not be easy. You may have to adjust your sights due to limitations on your health. But, you can work through it! When in doubt, feel free to seek out support resources, whether it be your physician, a professional counselor, or even your clergy. You don’t have to go through the process alone.

Do you have a story of discovery you’d like to share? Tell us about it in the comments below, we’d love to hear it!

C is for Compassion

C is for Compassion

Compassion, as defined by Merriam-Webster, is the “sympathetic consciousness of others’ distress together with a desire to alleviate it”. Or in more simple terms, “it refers to both an understanding of another’s pain and the desire to somehow mitigate that pain”.

Compassion is often an undervalued trait in people as a whole, especially true in the field of healthcare. I’ve had some wonderfully compassionate and caring nurses, and physical rehab specialists of various disciplines, and physician assistants. These people were able to make a very challenging and difficult situation much more tolerable by the seemingly simple act of compassion.

But it really isn’t a simple thing. Some practitioners I’ve encountered, mostly very competent ones, had an apparent lack of ability to show compassion or basic caring for another person. To these few, I was simply a medical challenge placed in front of them upon which to practice their particular healthcare craft.

While these people seem to be the exception to the rule, I find it distressing that anyone in such a caring profession could be without the ability to care about their patient as a human being vs. an illness or disease. These few function as robots who take input in the form of symptoms and spit out a diagnosis in response.

Are we to blame for this, or is an inherent lack of ability to feel for their patients? Is it a result of the demands placed on our healthcare practitioners by an extremely taxed and highly regulated system of medicine? Did they somehow lose their compassion in the bureaucracy of our healthcare system which seems to be run by the insurance companies rather than sound medical judgment? Or have they simply shut off their emotions in an attempt to survive in the sea of healthcare battles they find themselves in on a daily basis?

This article is neither an attack on our healthcare system nor what may or may not be wrong with it. Rather it is simply some observations based on real life experiences that beg for these questions to be answered.

Share your thoughts, with us, below.

A is for Access to Affordable Healthcare

A is for Access to Affordable Healthcare

Accessible healthcare has been in the news a lot lately. This is just one story of a recent challenge of accessing appropriate healthcare that I am choosing to share. Nobody, and I do mean nobody, should ever have to choose between food/shelter and healthcare. This is not an acceptable definition of accessible healthcare!

Approximately five weeks ago, my neurosurgeon decided I could finally return to physical (and other) therapies, after three months of post-operative healing time, following multiple simultaneous neurosurgical interventions in my cervical spine (neck). Alas, I had no way to get there, so it took me all this time to figure out how I would get there and to save the money to ensure I could get there and back three times a week, at a minimum. So two weeks ago, I finally scheduled the first of the three therapy evaluation appointments.

The physical rehabilitation facility I chose for my outpatient care was also the same facility I spent over a month in post-operatively, as well as previously both as an inpatient and outpatient for nearly two decades. So I am quite familiar with their level of care, and that being the case I would go nowhere else.

When I scheduled the initial appointment I was informed about their “charity care program”. This program is financial needs based and can help reduce or even eliminate costly bills beyond what your insurance may cover. They sent me the paperwork to complete, to be returned to them when I came in for the first appointment. Or so I thought. Apparently, I was mistaken. I received two telephone calls from the facility the day before my scheduled appointment. The first was to schedule two other appointments around the time for the first. The second call was from another department to verify that I was aware, up front, of the costs that I would be responsible for from these three appointments.

See, Medicare only covers eighty percent of covered services. The patient is responsible for the remaining twenty percent. In my case for the Physical Therapy evaluation, the cost for me was $15.90. The evaluation with the Occupational Therapist (for my hands) would cost me $15.43. Lastly, the evaluation with the Speech Therapist (for ongoing swallowing issues) would cost me $38.68 out of pocket. You may look at these numbers and think to yourself that those numbers aren’t that bad. While you may be right in one aspect, there are aspects you may not be thinking of.

Let’s see if I can shed some light on this for you. First and foremost, the total for one day of three appointments for comprehensive evaluations by each department listed would be $70.01. Mind you I do believe that the therapists in question, especially at this particular facility, are well worth the money. The value of their care is not the topic, rather the ability to access the care is the question. Now, so that you understand what happens next, you must realize that while it may not seem like a lot at first, once you start doing the math, you will see how quickly the numbers and totals begin to add up.

The first thing they informed me was that they had not received my charity care application yet. The discussion went on to address the fact that I was under the impression I was able to bring it with me on the first day. She went on to explain that while I could certainly do that, I would be held responsible for the balance owed for the initial evals, as the charity care application is not retroactive at all. She continued to explain that it could take up to two weeks to get the application approved, though occasionally as little as a couple of days. So now I’m faced with a dilemma, I think out loud. Do I make arrangements to pay the fees for the evaluations so that I can start therapy, or cancel them and await a decision on the charity care application. Her response was rather surprising, as she essentially indicated that while she didn’t know what to tell me, she required an answer immediately seeing how the appointments were for the following morning, and I had been scheduled for a visit in each of three different departments.

“Okay,” I said. “How about each appointment after that?”

“Well that could be even more depending on the billing code the therapist puts in”, she, oh so helpfully, explains. She went on to further explain that it doesn’t cover any specific treatment modalities, which are often in addition to the appointment cost.

“Well then, I guess you should just cancel them all until I get a response from the charity care application.” I said. “I don’t want to but I don’t have, nor can I afford $70 a day for therapy appointments”.

Realistically I could easily be looking at well over two hundred dollars a week just for the therapy time, excluding any specific treatment devices and the like. I had to budget how to afford two to four dollars a day to take the bus to get there seeing how I can’t afford to get my car running at the moment so that I can get back and forth to my appointments. That alone could cost up to $12 a week in bus fares. Let’s be conservative and say therapies wouldn’t exceed the $70 per day, that is $210 per week, plus transportation costs puts us at $222 per week, before any extraneous costs such as incidental / disposable supplies, or specialized treatment equipment. That is approximately $943.50 per month based on an average 4.25 week month.

Now, looking back, the seventy dollar triple visit may not seem so bad. Until you do the math, and find out you would be looking at a minimum of roughly nine hundred and fifty dollars a month that is above and beyond what your insurance covers. Keeping in mind there are many, many prescriptions I cannot afford that are significantly cheaper than even the triple visit cost, you will easily see that there is no feasible way that I could afford an extra $950 per month.

Could you?

In closing, I would like to briefly share a story from a friend. She relayed to me how, when suddenly ill one day, she was literally on the computer researching her symptoms trying to determine the nature of her illness without having to go to the Emergency Room. Eventually, she wound up going to the ER, as she had no other choice. But the fact that she, and many others, have had to weigh their health against being able to get groceries, pay rent, and the like due to the high cost of ER visits, and in some cases extremely high co-pays to be seen in the ER. For her, I believe she said her co-pay just to be seen was three hundred and fifty dollars. I don’t know about you, but I don’t have an extra $350 just lying around to pay the co-pay, just to find out if my symptoms are life-threatening or not. If I were forced to do this, I would not be able to. This is one reason that when I do wind up having to make the decision to go to an emergency department, I wait until I know without a doubt I will be admitted. Not necessarily the smartest thing to do, but I know lots of people who are forced to do the same thing. What would you do?

Share your thoughts with us in the comments below.

Inpatient Mental Health Just As Important As Physical Health

Most often when we think of someone being in the hospital, we think instantly of their physical health. However, mental health can play an important role in healing physical issues as well. The mental health aspect of healthcare, when it comes to physical maladies is often overlooked, or simply not thought of as often as it should be. I am a firm believer that every patient who has been admitted to the hospital should receive, at the very least, a cursory mental health examination. By doing so, properly trained staff may well be able to predict the need for further psychological or even psychiatric interventions.

This cursory exam should be performed on each and every patient who is admitted to the hospital, to identify potential concerns. This should apply even if the patient is entering the hospital for a seemingly simple procedure or even something that may be as considered as routine as giving birth. Whether the patient is a veteran like myself, with maybe a new and unfamiliar medical condition, or a relatively healthy person who has experienced a life-altering medical or trauma related incident that has led them to the hospital. Either of these patients can experience many forms of anxiety which can manifest itself as anger towards others including staff, and by the untrained professional caregiver be considered as non-compliant or even belligerent, when all they truly are is scared and anxious of the unknown.

I have personally once been prematurely discharged from the hospital by what I deem to be an improperly trained resident who had convinced his attending that I was being belligerent and argumentative. In reality I was suffering the well documented effects some people experience from steroid medications, nicknamed “roid rage” in the medical community. It is so aptly named because the patient becomes argumentative, belligerent, and occasionally even physically violent on steroid medications. While I partially blame this on inadequate training of the resident managing my case. I further blame it on inadequate oversight and supervision of the resident by his direct superior who signed off on my discharge without ascertaining all the facts for themselves.

By having and properly utilizing mental health services, you can prevent unnecessary “labels” such as non-compliant and belligerent from being applied to patients which carry their own risk of further using or heightening anxiety. By making the appropriate mental health referrals, you can not only reduce the stress a patient may encounter, but improve their physical recovery as it has been well documented over time that mental health can most definitely affect physical health in a variety of ways. Emotional distress can manifest itself into physical symptoms which in turn could easily complicate proper diagnosis and treatment of a patient, especially if the providers have not considered the patients mental and emotional health appropriately.

To someone with a major or even relatively minor illness that requires hospitalization, and this is their first ever encounter with the inpatient aspect of healthcare, the experience can be quite stressful. The issues one may feel range from depression over the source of their admission, especially if it will be a long term illness or recovery, to loss of control over their own life and care, to anger (why did this happen to me), feelings of loss, or any range of emotions. It is important to realize that the first time patient, has absolutely no idea what to expect when admitted to the hospital. And realistically, most often staff themselves are too busy to explain each step of the way what the new patient may expect.

Even a veteran patient like myself, can find themselves feeling similar anxieties despite being sometimes intimately familiar with what to expect. Maybe the reason for this admission is different than precious ones, or you have a different physician with whom you do not have your normal rapport. Or maybe you are simply anxious over the unknowns of being hospitalized despite having been through it before. Maybe you are facing a potentially lengthy recovery that will require admission to a physical rehabilitation facility or even to a skilled nursing facility, often referred to as nursing homes. While skilled nursing facilities are often also utilized for short and sometimes even long term physical rehabilitation, the stigma associated with the term “nursing home” may well cause further anxiety, and yes even fear in a patient. These items need to be addressed before they further complicate the patient’s recovery.

Not only is it perfectly okay to feel this way, but it is also entirely normal for some people to be more susceptible to the stressors of being hospitalized in an inpatient setting. This does not imply weakness of either mind or body, rather it indicates that you are reacting normally to a stressful situation of which you have little to no control, or even any idea what will happen next. One in which it is often not explained to you on an ongoing and consistent basis what is going on with your care.

More than once, I’ve had a transport aide arrive at my room to inform me that they are there to take me for <insert random medical test here>, when I had no clue that such a test had been ordered, let alone even considered to be necessary by my medical team. Sadly this has become the norm. Patients in ICU often experience even more severe anxiety than those on a regular floor. Between the severity of their particular health condition, the unfamiliar surroundings, the and the unusually naturally stressful environment of the ICU itself, are all stressors to even the most experienced patients, as I myself can attest to having recently awakened on a ventilator when that was not expected in the least.

I’m not saying every patient who gets admitted to the hospital should be placed on anti-depressants or other mental health medications or treatments. What I am advocating, is that everyone involved in the patient care team pay attention for the warning signs of some of the aforementioned stressors that can also contribute to depression on a more long term basis if not addressed properly in the first place. Often an outburst by an otherwise very pleasant patient is a sign of something lurking below the surface such as anxiety, or even confusion over their healthcare.

As previously stated, a routine mental health screening wouldn’t be a bad idea to determine those patients who may be more susceptible to the above issues, or even those who may already be experiencing them, but are afraid to admit it for fear of feeling or being labeled as crazy. Mental health should be a part of every patients care management team, for both their own health as well as staff safety. If you have a patient who is feeling overwhelmed who may lash out, this then become an important safety issue for not only the patient but also facility staff.

During a recently particularly stressful day, and a relatively sleepless night due to that stress, despite being totally unrelated to my hospital admission, I was in a really sensitive and even downright bad and cranky mood. An innocent comment made to me by a staff member that I took out of context, led me to verbally lash out at this staff member. Thankfully this staff member was very familiar with me and new that this was way out of context of my normal demeanor. Rather than simply lash out in return to my outburst, she took the time to speak with me, and determine the real cause of my demeanor change. When all was said and done, things ended on a relatively positive and upbeat note. The particular staff member realized that right then was not the time to “push” me into the scheduled treatment, and graciously agreed to give me time to collect my thoughts and myself, in order to better face the day ahead. Further she agreed to make accommodations in her very hectic schedule to permit me to make up that treatment.

In closing, if you or a loved one finds yourself as an inpatient, be sure to be aware of the potential stressors that could further aggravate your health and your recovery. Don’t be afraid to reach out for an evaluation, or treatment if necessary. It is not an admission of weakness. Quite the contrary it is an admission of strength enough to know your body well enough to know it’s own limits, and to know when to ask for help!

We Are All Dying…

Most of us go about our daily lives oblivious to the dangers lurking all around us during nearly every second of our seemingly routine and maybe even mundane existence. While some of you may well find this post to be morbid and unnecessary. I assure you from personal experience on multiple levels, many of them personal and very close to home, this is a topic that must be addressed.

This is a very difficult, yet sobering and absolutely necessary topic. The hard truth of life, is that we are all dying a little bit every day. From the time we are born, we are in effect, also on the path to our inevitable death. Sure, we don’t have an expiration date stamped on the bottom of our feet, nor should we live life in fear of what could happen to us, or how and when we will die. However, we certainly must be aware that horrible things happen to good people each and every day. While we must not allow ourselves to live in fear of these life changing events, we also cannot afford to bury our head in the sand and pretend that they simply do not exist, or that they only happen to other people, not to us.

As a result, it is important, at all times in your life, regardless of your health, age, or even socioeconomic status to have this discussion with your family, your spouse, and even your children if they are at an age appropriate to have this discussion. Most people I’ve talked to consider including their children in this discussion only  when they reach the age of adulthood. However I will leave that decision up to you, as I believe that it may in fact vary upon your personal situation and circumstances.

It is imperative that in the event you are unable to speak for yourself that your family is aware of your wishes as to how you wish to be treated medically. For example, do you want what are often termed “heroic measures” to be used in an attempt to save your life? These can include cardio-pulmonary resuscitation (CPR), being placed on a machine to breathe for you (ventilator), and more.  Or would you rather be permitted to, as some have called it, “die with dignity”. Do you want antibiotics to cure an infection? Do you want a tube placed in your stomach to deliver nutrition in the event that you are unable to take nutrition orally?

You may be sitting there reading this asking yourself how in the world you can begin to answer these questions, without knowing what the specific medical circumstances may be that have placed you in that predicament where these decisions may have to be made, often in an immediate nature, meaning in seconds not minutes, hours, or days.

It is often best to think of it in this way. These types of questions, often included in what many states call a living will, only apply if you become so incapacitated that your condition is considered irreversible. If you do not specify your wishes by completing a living will, or at the absolute least, a healthcare power of attorney which will name someone to act and speak on your behalf should you be unable to, also called an advocate, specifically in the area of medical decisions about your healthcare. Without these documents, you could easily find yourself in the same situation as Terry Shiavo ( who was kept alive for many years during many legal battles.

I am not going to get into the whole story, for you can read the linked article, or do your own google search and find tons of information on the case. The point of mentioning it is that if you do not appoint someone to make your decisions in a manner approved by your particular area of residence, or even better complete a living will, which spells out your wishes, you could well find yourself being kept alive by artificial means, despite the fact that you would never have wanted that. You need to do your own research for your state (if in the USA), or wherever you may live, as the rules, laws, and forms acceptable vary widely from one area to another.

Recently when facing a rather complicated set of neurosurgical procedures, my wife, my daughters, even their significant others, and I all sat down and had this very difficult decision.  We discussed in great detail what my wishes were should I become incapacitated and unable to make decisions on my own. We further had the even more difficult decision as to my wishes if it should be determined that I was in a permanent irreversible state, with no hope of improvement or quality of life.

We did our research and, with the help of a friend who had also done similar research for her mother, were able to complete a set of forms that covered both the Living Will, as well as the Healthcare Power of Attorney. In the Commonwealth of Pennsylvania, they are supposedly not required to be notarized, but we chose to get them notarized when we signed them with the requisite two unrelated witnesses. We then provided completed copies to my physicians, the hospital, etc.

I am including the link to the provider of the forms we used strictly for informational purposes, and you are instructed to do your own research and find out what your local laws and requirements are. However, if you wish to get an idea of the types of things you should be thinking about & discussing with loved ones, you may find the forms we used at the website of the Allegheny County Bar Association in Pennsylvania by following this link:  The website claims that it is the only form endorsed by both physicians and lawyers here in the Commonwealth of Pennsylvania.

I urge everyone who reads the article to consider completing such forms, and updating them as often as necessary.  While you may feel one way right now while you are otherwise healthy, should you become ill, or worse, terminally ill, this could and likely should change how you would answer the questions posed above and by the above referenced forms. I personally named my wife as my primary advocate, my eldest daughter as my secondary advocate, and even went a step further and named my best friend as a third advocate in the unlikely event that something were to happen to myself, my wife, and my daughter all at the same time, such as a car accident.

While none of these questions are things we want to think about let alone discuss out loud, it is in your best interest to do so now, while you have the time to think about and  the ability to make your wishes and decisions known. I’ve also been told that some states further require you to have the same discussion with your primary care physician and that he must enter the details of that discussion in your medical records.

A friend has also graciously provided a link to a resource that she has found useful in these types of discussions. While the website itself is for C.R. Strunk Funeral Homes, it has some good resources for a variety of things besides strictly funeral planning, and may well be worth the read.

Lastly, I would like to urge everyone to consider your thoughts and desires regarding organ donation. In the event of your death, your organs could well save many lives. I personally known of two people whom have had kidney transplants, and most recently a good friend of mine was the recipient of a double lung transplant. Again, I urge you to check with your state’s requirements on becoming designated as an organ donor. Here in Pennsylvania it is as simple as checking the “Organ Donor” box when you apply for or renew your state issued ID or Driver’s License. I do not have a clue what other states may require.

Here are a few very well written and informative articles from a fellow blogger on the topics covered n the post. I am including them as I have often found her writing to be even better than mine, and the more information I can present you with in an attempt to clarify these rather difficult subjects, the more informed you will be when making those “tough” decisions.

Of course no article or post like this would be complete without the standard disclaimer that the information contained herein is strictly for informational purposes, and does not constitute legal advice. You are hereby instructed to do your own due diligence, research, and follow the laws in your state. Further, I recommend you consult a qualified attorney to answer any and all questions that you may have prior to completing and submitting these documents to your healthcare providers according to your local laws. These are not decisions you should take lightly, nor is the responsibility of completing the documents appropriately and properly.

It is my sincere hope that by reading this article, it will prompt you to prepare for the unexpected, so that should tragedy strike you or your family, you will be more prepared to face the difficult tasks of decision making because of the time you took to educate yourself, and complete these documents. I pray you will never have to use these documents, but the truth of the matter is that we never know what will happen or when it will occur.

All Patients are NOT Created Equal….

Despite having worked in EMS, as well as in hospitals on medical/surgical floors; Skilled Nursing Facilities, Emergency Departments, Operating Rooms and many roles over my years before becoming ill, and the fact that I now have extensive knowledge and experience being a patient, I have once again learned what I think is a valuable lesson that some of us forget over our time in service to others in healthcare. And the fact of the matter is that all patients are NOT created equal!

While I will readily admit that I am by far not your typical patient, I sometimes forget that not every person has had the experiences that I have had in being a patient. Not every patient has the same pain tolerance or thresholds. Not every patient has even the slightest understanding of how the healthcare system works, or what to expect when faced with a healthcare dilemma in their own lives, regardless of whether that situation is medical or trauma related.

This fact was reinforced for me over the last few nights by the woman in the room immediately adjacent to mine. She reminds me of the story I often heard as a child of “the boy who cried wolf.” When faced with even the slightest amount of discomfort, she screams such a high pitched wail that even staff from the other side of the unit come running, initially.  They are beginning to sense a trend and while they still respond immediately, they now seem to be realizing that she is in fact not dying or in need of immediate assistance as if she had fallen. I have even heard, on occasion a very large bang followed by her high pitched wail. Later to find out that she had not fallen or even moved out of her bed, so I can only assume that she has figured out that if she makes a noise loud enough to lead staff to believe she has in fact fallen, that they will respond quicker.

While I do not doubt she may well be in incredible pain,  I do doubt that she is going about getting the care she needs in the most appropriate way. Having never had a hip replacement, I am not attempting to diminish her level of pain, as I am quite sure having a hip replaced is not a comfortable procedure and leaves a great deal of pain immediately post-operatively.

I further doubt that any type of pain or discomfort gives her the right to verbally abuse nearly every single staff member with whom she comes into contact! Two nights ago, after being heavily medicated myself for the sole purpose of sleep, I laid in my bed listening to her berate a nurse for not giving her the attention she felt she deserved. The nurse tried her very best to explain that she was not, in fact, ignoring her, but rather had been tending to another of her patients and had been in the middle of a dressing change on the other patient. This woman continued to berate her stating things like “but you said you were my nurse,” implying that she believed she was this nurses sole patient.

When the nurse was finally able to escape the patient’s room to go get a few of the items demanded by this patient, you could tell she was visibly upset. I caught her attention and flagged her to indicate she should come into my room. As she did I whispered to her that she was now in a “safe zone” where she could take a brief respite from the abuse.  I have rarely seen a nurse so visibly upset and shaken by a patient’s lack of compassion for the people who have, for whatever reason, devoted their lives to caring for others.

Meanwhile out in the hall, you could hear thee same patient berating a nurse’s aide or patient care assistant as they are also sometimes called, for not having vinegar and honey on the floor, which is a well-known remedy for curing muscle spasms. She went on and on to this aide about how insensitive people were to her pain and her “requests” for assistance. As the nurse went on to give me my medications quickly so that she could go tend to this patient which would take a great deal of time, she apologized to me for my having to hear this. Why should a nurse have to apologize for a rude, inconsiderate patient?!?

If you find yourself a patient, there are a few things you must understand, which will not only make your stay more pleasurable or at the very least tolerable, but also keep your providers happy.

The demand for respect, compassion, and attention that you so blatantly demand goes both ways. Each and every care provider with whom you come into contact deserves the same things you are so rudely demanding of them! They have taken a great deal of time, sometimes many many years, and tons of student debt in order to help people like you. When you treat them poorly, all you do is cause them to wonder if they chose the right profession, if this is the abuse they have to put up with at work. And yes, yelling at, berating, or otherwise being inconsiderate of your nursing staff is, in reality, a form of abuse. While it may not be physical abuse, it carries the same punch as if you were to reach out and strike them across the face.

Secondly, when a nurse introduces themselves to you at the beginning of their shift and tells you that they will be your nurse for the shift, they are by no means being literal! Yes, they will be your nurse in the sense that they will care for you. But depending upon the setting in which you find yourself, they could have as little as one or two other patients, to as many as eight or ten. So be patient, and try to be understanding when “nobody comes immediately after ringing the call bell.”

Third, pain medication, except when given intravenously, which is rare outside the immediate acute setting of a hospital, and even more rare in an acute rehabilitation facility, can not, and will not work instantly! This does not mean you can demean the nurse for not knowing what they are doing or giving you less pain medication than you deserve. They have given you what the physician has ordered, and when given by mouth, it takes some time to work. A medication taken orally takes an average of fifteen to even as much as sixty minutes depending upon the patient and the amount of food in their stomach at the time of administration.

While natural or homeopathic remedies are becoming more accepted in general, do not expect them to simply exist on the unit you are on, even when they may be something simple as a concoction of honey and vinegar, they are not items typically found on nursing unit, nor can they be administered without a physician order despite the extensive training required of most RN’s, they are not permitted, as a general rule, to prescribe treatments of any sort without an expressly written or occasional verbal order from a physician. As such, even if the items exist, you will not be permitted to use them without first discussing said use with your physician.

The “Golden Rule” of life explains all of this in a nutshell. “Do unto others as you would have the do unto you.” By keeping this in mind you will make what may well an unpleasant situation much more tolerable for yourself, as well as those caring for you. And by all means, don’t forget the manners we were taught from a very young age. Saying please, thank you, “could you please do _____,” will get you much further than demanding respect which you yourself are unwilling to give to those from whom you demand it!