Just Don’t Say It! #AtoZChallenge

J is for Just Don’t Say It! Think before you speak!

There are times in our lives when we may hear distressing news from or about someone who we care about. At those times our natural reaction is to say something comforting to the person sharing this information with us. However, in an attempt to be caring and supportive, people may unintentionally say things that wind up being totally inappropriate for the given situation.

It isn’t that they don’t care. Conversely the opposite is often true. It is often a matter of being overwhelmed with the severity of the situation and having no clue what to say, but desiring to show support in a very difficult situation. Below we will see some of the common responses to situations, that often leave the person to whom you are speaking feeling more frustrated than comforted.

When hearing of a devastating illness, injury or diagnosis that will result in chronic health challenges don’t…

Say “Feel better soon!” – They likely will not get any better!

Say “It could be worse!” – They know it could, but to them this is as bad as it gets!

Say “I’ll let you focus on your health, and we can catch up when you feel better.” – By saying this you imply that you aren’t there for them during the difficult times

Say “Well at least you can still” <insert anything here>. – This undermines their legitimate feeling of loss.

Say “Things will get better!” – Especially when the person obviously is experiencing a permanent disability such as paralysis, or worse yet a terminal illness. (Yes I’ve seen it happen firsthand!)

Of course, these are only a few simple examples that come to mind to try to emphasize the importance of thinking before you speak. When in doubt as to what to say to someone about a situation, simply try being honest. Try explaining that you really don’t know what to say at the moment, but that you care and will be there for them (and in support of them). But if you make this offer to be there for them, you must be able and willing to follow through on your statement.

I could write tens of thousands of words on this subject, but for the interests of keeping this post relatively short for the #AtoZChallenge, I have chosen short, simple examples that will hopefully be relatable for the greatest number of people.

What are some of the sayings you’ve heard that have affected you? Please share with us in the comments below.

Inspirational #AtoZChallenge

I is for Inspirational

I can’t tell you the number of times I’ve been told how much I inspired someone to be better in their life. This applies to healthcare practitioners, other chronically ill people, and your average person you might see walking down the street. I appreciate the kind words, and it is nice to hear someone say something positive for a change. But to be honest, I just don’t see myself that way.

See I don’t envision myself as being that special. I do what I do because it is who I am. I’ve always been what some call a giver. Years before I even graduated high school, I joined emergency services. Not because of anything other than I wanted to help people, and I loved doing it. I was lucky enough to have a career in pre-hospital emergency medical services for many years before being diagnosed with a chronic and debilitating illness.

After my first (of many) diagnoses I promised myself I would find a way to continue helping people in spite of my illness. I became involved in a local support group for those with the same diagnosis. I began researching everything I could to not only help others but to help myself in the process. From the same early age, I was involved in volunteer emergency services in a variety of roles. All of these roles were rewarding, and I enjoyed each one in their own way. And I consider myself very lucky to have made a difference in more than one life along the way of the last few decades.

Others may see this as me being an inspiration to them. However, all I see is the fact that I have something to give, and in an effort to make sense of my own life and help others along the way, I plan to give just as long as I am capable. My ability to give has been severely hampered by physical restrictions of late, but I still have lots to give. I just don’t see how that makes me special.

I’m just another guy who is too stubborn (or stupid) to quit, lay down and die!

Has anyone ever called you an inspiration? How did it make you feel? What were your thoughts? Please share with us in the comments below! We’d love to hear from you!

Hopeful vs Hopeless #AtoZChallenge

H is for Hopeful vs Hopeless

For anyone battling a chronic illness, there is a fine line between feeling hopeful versus feeling hopeless. This line may well blur depending upon the day, the severity of the symptoms that day, and the overall quality of life. I’d be lying if I said I have never experienced even the slightest bit of hopelessness. It is what we do with that feeling when it arises, that determines what happens next.

When we hurt so bad we can barely manage to get out of bed to go to the bathroom, and there seem to be more days like this than not, it is very easy to feel hopeless. When you can’t make food for yourself because you are unable to stand to do so, it is easy to lose hope. When you are unable to bathe yourself or feed yourself, it is easy to feel as if all hope at life as you knew it is gone. If left unaddressed, feelings of hopelessness can spiral down a rabbit hole that has no return. It is important to acknowledge these feelings and discuss them with your family, friends, and caregivers. You are not alone in this battle, and the more people you have on your team, the better you will be.

The phrase that is the key, I believe is “life as you knew it”. Whether we like it or not, if we are facing a chronic illness, our life as we knew it before illness has little bearing on who we will become with the illness. The key to discovering how to remain hopeful is to embrace your limits, learn how to manage within those limits as best you can and continue to grow as a person. While we will have those moments or even days where nothing will make us feel better, it does not have to consume you.

“Losing hope is not a sign of mental illness. It is a sign of being human”. Dr. Charles, Psychiatrist, Chicago Med Television Show. Episode “Prisoner’s Dilemma” aired 22 February 2017.

What you do if you do lose hope, is what determines where you go from there. How do you battle the hopeless feelings when they occur?  What is your secret? Share with us in the comments below!

Giving in vs. Giving Up #AtoZChallenge

G is for Giving In vs Giving Up     #AtoZChallenge

When we are challenged with a chronic health issue, it is normal to have doubts as to the new normal of your life. With a new diagnosis often comes a plethora of uncertainty, which can shroud our minds in confusion. This is both expected and quite normal. However, it is imperative that we remain cognizant of the challenges we face as we or someone we love adjusts to a new health issue. [To be clear, for the purpose of this article giving in refers to acknowledging the need to adapt, and giving up is a permanent decision.]

Sometimes we are faced with choices in which we must essentially give in and realize that things will not be the same after a diagnosis. This is despite what we may want most in life. At this point, we must decide if we are willing to adapt (give in) to our new diagnosis and its’ limitations, or if we simply wish to give up on life as we know it. When considering all the available facts with which you make your decision, you should involve your health care professionals and those closest to you. I would be lying if I said there was one right answer, for it is an extremely individual decision process, based on the health information available to you.

Giving in means you can adapt, overcome, and excel despite your limitations. Giving up means you hold no hope whatsoever of any quality of life. Giving up is the last resort, and I encourage all of you to regard it as such. With technology and medicine advancing as rapidly as it is, there are many viable options to improve your quality of life, and subsequent happiness, despite your illness. Giving in means embracing your current health, and choosing to make the necessary changes to continue.

Unless you are faced with a terminal or other permanently hopeless situation, I urge everyone to make the conscious decision to try everything humanly possible to adapt to your situation and continue living to the extent allowed by your health. I’m not saying it will be easy, but I promise you that once you make it through the initial adjustment phase, it will become easier. It will also be extremely rewarding as you discover new passions and opportunities that will present themselves to you as you progress through your journey.

F is for Keep Fighting! #AtoZChallenge

F is for Keep Fighting!     #AtoZChallenge

When facing a chronic health issue it is easy to lose the determination to fight at times. Many of us display great fortitude when fighting chronic illness. We don’t necessarily do this because we are any better than anyone else. We do this because this is all we know. We keep fighting for the next potential treatment, or if we are truly lucky a cure. We often fight one day, week, or month at a time, just trying to make it until the we make it through, or are faced with another challenge in addition to the one we already had.

Many people who battle chronic illness are faced with more than one diagnosis, or even side effects of the treatments aimed at improving our quality of life. Occasionally even the most steadfast warriors experience a rough day. During such a day it is not unlikely that they will question the quality of their life. Keeping it in perspective it is often a matter of making sure the positive aspects of their life outweighs the negative.

It is during these times that even the strongest of us can find that we wonder if it is worth the fight. Wondering if it is worth it is not a sign of weakness. In reality, the strongest among us will eventually have a bad day or period of time in which we can’t help but wonder. It is what we do when we experience these difficult times that determine both how we react and how we will come through the tough times. Realizing that tough times happen even to healthy people, should help to keep things in perspective.

The defining moment for us is not how we battle daily life, but how we face the challenges in our low points. By focusing on the positive and realizing that the low points are temporary you can get through almost anything.

What do you do to get through the extremely challenging times in your life?  Share your story with us below, and most importantly, keep fighting!

E is for Being Excited About Life! #AtoZChallenge

E is for Being Excited About Life!     #AtoZChallenge

So you or someone you care about has a chronic illness. It isn’t the end of life as you know it.

Remember the excitement for life that you had before you got sick? You can have that again! Just because your health has changed, maybe even drastically, does not mean all is lost.

Today, more so than ever before, technological advances have enabled even the most limited in physical activity to remain at the very least mentally active. So if you have the desire, there are lots of things you can do to remain active and yes, even passionate about life!

Without going into specific examples based on your previous level of knowledge and expertise in any given area, there are still a variety of things you could do to occupy your mind and your time. You could use your previous knowledge to educate others. For that matter, you could use your current situation as a catalyst so that, when you are ready, you can share your experience with others. You could decide to pursue further education and new career goals.

Maybe you are not only chronically ill but also suffer from the effects of chronic pain as I do. If you find yourself unable to hold regular employment, all is still not lost. There are still plenty of ways you can continue to feel like you have something to contribute. Even something as simple as becoming a volunteer in a facility or unit that made a difference for you.

While maybe that isn’t as fulfilling in your mind as employment, I can tell you that there is something quite as fulfilling as being able to give back to those that have taken the time to help you when you needed it. Remember when you were at the worst possible point in your health and someone took the time to stop and talk with you? Remember how good it felt that someone actually cared who maybe didn’t need to, in the aspect that they weren’t being paid to do so? You can be there for someone else. Maybe you encounter a patient who could draw inspiration from the fact that you had been where they currently are, and you prevailed.

Become excited about life again!

Have you found a new purpose in your life after health issues? Share your story with us 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.

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.