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.

Believe…

Believe…

No matter what you are going through, you must believe…

  • In your strength
  • In your abilities
  • In your worth
  • In humanity
  • In yourself!!!

Sometimes in life we find ourselves facing a life altering event of some sort. It could be the loss of a job, or the loss of a loved one. Perhaps you’ve suffered some sort of major medical crisis or traumatic injury. You may think I am being vague, and you’d be correct. I am intentionally being vague because what constitutes a major life changing event is often subjective and as such it varies from one person to another.

Despite the catalyst for your challenge, there are some common reactions and challenges. Depression and even grief are very common results which can add to decreased feelings of self-worth. Recognizing these emotions and their existence can aid you in facing the challenges of adjusting to the circumstances of your individual life challenge. While simply existing may seem counterintuitive to the point of this, sometimes just existing shows your desire and willingness to work through your challenges. Don’t sell yourself short, for sometimes willing yourself to survive is no small feat! The days when you feel up to it,  believe in good things to come. The days you lack the strength or ability to believe this, just believe in making it through the minute, hour, and day in front of you. If you do this over and over, one day you will find yourself suddenly moving on in a positive new direction, despite your challenges.

Despite battling multiple major and chronic health issues and injuries over the last twenty years, I’ve had plenty of days where even I simply had to get through the next hour, and then the next one, one at a time until I made it through the day. Days like this, when I feel as if I just can’t go on, often leave me surprised that I made it through. On the very challenging days, ‘simply existing’ isn’t a sign of weakness. On the contrary I feel it is a sign of strength when you make it through any given day, despite your challenges. So believe in yourself, because if you don’t, how can you expect others to?

As time marches on and you adjust to your situation, you may well decide that while you understandably miss your previous sense of self, you can pursue another passion you hadn’t previously thought about. The only limit to what we can achieve, is our own perception of our situation. While very real limitations may in fact exist, it isn’t uncommon for us to feel that they are insurmountable. Sometimes what we perceive as a limitation, may actually reveal itself as a strength as you begin to work through things and pursue options you hadn’t previously thought about.

I highly recommend journaling to help you comprehend the flood of thoughts and emotions you may be experiencing. Write every day. Write especially on the days you don’t feel like it or just plain don’t want to. Later when you go back and read it days, week, months, or even years later, you will likely find things that surprise you. When you are in the midst of a major challenge, you may not be able to think clearly, or even understand everything you may be thinking or feeling. I’ve spoken with a great many people who swear by journaling to get the jumble of thoughts out of their head, onto paper where they suddenly find themselves more relaxed and thus more able to process all the thoughts. Some people report feeling a calm sense of objectivity when reading their own journal, as if it is someone else’s words that they are reading. This can give a fresh perspective on how to best manage the challenges before you.

Have you had a major challenge in your life that, despite it feeling insurmountable, you made it through? Feel free to share in the comments.

Above all else, remember to just believe….

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.

#AtoZChallenge

Hello, everyone!   We are excited to share that we are participating in the A to Z Challenge this year. For more info on the A to Z Challenge itself, you can visit their website. Our theme for the month will be primarily focused on healthcare issues for those with chronic health challenges, patient advocacy, and self-advocacy. If any of these topics interest you, we encourage you to follow our blog via Bloglovin’, Twitter, Facebook email, or the preferred method of your choosing. We look forward to an exciting month and sharing a wealth of information with all of you!

Thanks for all your support, and don’t forget, if you have a story to share, feel free to reach out to us!

An Interesting Perspective on Delirium…

On November 19, 2016 I shared an article on the importance of preventing, recognizing, and appropriately treating the effects of ICU delirium in patients. The article I will reference now pertains to delirium, but not in the typical sense. It addresses the same topic of delirium, but in a different light. In this article the author, who is also a physician, discusses in-depth the potential for delirium in an inpatient setting, which he himself experienced.

Delirium can manifest in a variety of ways and severities, and this author does a phenomenal job of explaining just how easily it can happen, to any of us. It can happen regardless of the severity of the issue which put us in the hospital in the first place.

I particularly like the fact that the topic of training caregivers through real life experience is addressed in such a practical way. Back when I was still working EMS, we routinely challenged students and new EMT’s and paramedics to experience many of the same treatments we would provide to patients. These exercises often included being secured to the stretcher and going for a ride on a rather curvy and bumpy road within our jurisdiction. While seemingly an innocent and simple experience, it often resulted in them sharing a newfound understanding for what the patients we encounter must go through. Even on the smallest scale, this is an improvement over understanding gleamed only from a textbook.

See the original article by physician Robert Pearl, M.D., originally published on Forbes by following this link: “It’s A Wonder People Survive More Than Three Nights In A Hospital”. It is well worth the time to read!

Share your thoughts below, and let us know if you have experience with this phenomenon.

The invisible work of a patient…

The following article is a well thought out and articulated approach to the shifting of demands on the practitioner to that of the patient. It also addresses the fact that patients labeled as non-compliant often may simply be overwhelmed. The stigma attached to the concept of noncompliance often infers that the patient is willingly making a conscious choice to be noncompliant. Where in reality, the patient may simply not have the knowledge, expertise, or resources to manage what has been thrust upon them.

We all, regardless of whether we are a provider, a patient, or a caregiver, must be cognizant of the shifting responsibilities being placed on patients and their caregivers. While I am wholeheartedly in favor of patients being an active partner in their own healthcare, they are unknowingly assuming more and more responsibilities. In the process of the responsibility shift, the patients are getting less and less time with their actual practitioners, leaving them with more questions as to their own care.

See the original video and transcript from NEJM Catalyst here. It is worth the ten minutes to become aware of how our healthcare system has evolved. It doesn’t matter whether you feel these changes are positive or negative, they are here. By arming yourself with the knowledge, hopefully, you can help prevent you or someone you know / love from falling victim to being overwhelmed.

Big changes coming – SOON!

To those who stuck with me as this project grew from a simple discussion during a brief break in a medical conference in a couple of very short years ago into a book in process,  a handful of articles, and into the site and blog that you see now, I sincerely thank you! For without all of you, I highly doubt I’d have been able to make any of this happen.

While there may only be a few blog posts currently on the site, I’ve been writing things for a number of years now and sharing the exclusively with those who have supported my efforts. Some of these writings you will eventually see here once they are properly edited for publication. I’m also in the process of some brand new posts, that will further explain what it is we hope to accomplish, how we plan to get there, and what you can do to help us better understand your needs so that we can assist you in understanding and actively participating in your own healthcare.

I took a brief break from writing blog posts for a little over a month now, purely for seemingly selfish reasons. I needed to focus on my own health and post surgical recovery. While I felt extremely guilty initially, I quickly realized I had to take that break if I planned on being around to continue to bring ideas to you so that we can create change in the current practice of healthcare. Rest assured that things are rapidly getting back on track, and you can expect to see many new posts in the immediate as well as ongoing future. There are many new concepts and projects in the works. Some of these things you will see rather quickly, and some may take some time to work out all the logistics, and kinks before they get shared here.

During the month of March there are some big things in the works. While they are moving forward, you can expect more blog posts to address a multitude of topics in the area of healthcare. We are also in the process of creating downloadable documents from which you can make them your own, to suit your individual needs. They will include such things as a way to keep your medication list current, and readily accessible for you to provide the list to any healthcare provider. There will also be a way to help you organize the necessary information and questions for your next appointment with your physician/clinician.  We are also trying to come up with a simple way in which you can document your pertinent health history in the same succinct and simple way, also allowing you to keep it readily accessible.

In the hopes of creating a safe place where you can discuss your healthcare concerns with those who understand your concerns are both legitimate and important, we have created a Facebook page where you can share with us, and each other. We are always looking for input on what YOU wish to learn more about, or what would help you to be a more informed patient or healthcare provider. So don’t be shy – tell us what you would like to see, and we will do our best to fulfill your request! Follow us on Facebook or Twitter to get the most current posts, and find others like yourself! We encourage you to share your thoughts, questions, and comments so that we may better understand what your needs may be so we can target our efforts to support all of you!

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!