Life Isn’t Over – #AtoZChallenge2018

 

Life Isn’t Over – #AtoZ Challenge 2018

 

Today’s topic is one that is very important. You may have received what you feel is a devastating diagnosis and that your life is over. While it may, in fact, be a devastating diagnosis let me assure you that your life isn’t over whether metaphorically or literally speaking. This is even true in the very sad event that you’ve been given a terminal diagnosis your life is not, in fact over until you cease living. While that may sound harsh, it’s true. As the old saying goes “it isn’t over until the fat lady sings” and the same can be said about life.

Now that we’ve established that basic rule of life, let’s take a look at the more metaphorical aspect of this discussion. Let’s say you’ve suffered a horrific injury that has left you permanently disfigured, injured or otherwise less than feeling like a whole person. While there is absolutely no doubt that your life may, and probably will, change dramatically rest assured that there is still plenty of life left to live.

Breaking it down in very simple terms due to the condensed aspect of this post let’s take a look at some relatively simple truths. First and foremost you’re not dead, until your dead as we established above. Secondly, while mired in the precarious emotional quicksand and trying to absorb what has just happened to you it is imperative to realize that while life may never again be what it had been up until that point, this does not mean it is over.

Certainly, that particular portion of your life will change and may change so dramatically that it very well could feel as if a part of you has, in fact, ceased to exist, it is all in how you look at it. Yes, the situation may be horrible and you likely may not be able to do things you once could. But there is more to you as a person than just what you may be able to do physically despite whether that is in terms of recreation or occupation.

Does your situation make you any less of a human being or more specifically who you have been up to the moments before the diagnosis? I offer that it has not, and cannot change the core of who you are or have been. If you are not careful a major medical stressor such as this could easily change how you see and react to life maybe even making others think you are a cold, unhappy, or maybe even mean and nasty person.

The fact is you are still the same person. The thing that changes is our attitude based on how we choose to deal with the situation with which we are suddenly faced. Some of this can be based on how you’ve faced challenges previously in your life. Those who tend to shy away from change in their lives previously, for whatever reason, may have a harder time, which is totally understandable. If you’re the type of person that welcomes a challenge and the opportunity to ‘prove’ yourself, then you may not be quite as affected by this sudden challenge that’s been laid before you.

No matter which type of person you were prior there are a wide variety of various resources available to help you from general mental and medical health practitioners all the way to specialized support groups. With the explosion of social media, you could certainly seek help in a myriad of online groups that focus on your particular situation.

Rest assured that you may be closing the door on the ‘old you’ that there is a new and improved version of you just waiting to make its appearance if you so desire. The choice when extremely oversimplified comes down to whether you have the desire to fight for that positive change or simply permit the negative circumstances to determine your fate without any attempt on intervention by you.

Maybe you’ve been told you will never walk again for whatever reason. Does this end your life? No, it does not. Admittedly it is going to be an enormous shift in what you’ve been used to and how you will physically be able to approach life from that point forward. However, despite your sudden infirmity you can still prevail and live a happy, otherwise healthy, and productive life.

Sure, you may have to alter your ideas of what productive means to you personally. Maybe you previously were an extremely active person and your job is typically geared to ‘normal’ people in the aspect of not being usually thought of as something a person in a wheelchair could do. Does that mean you can’t forge a new path? Absolutely not. It just means you may have to redefine your path and what your current goals and what your preferred result will be.

During all of this, it is very critical to set yourself realistic goals, and not set yourself up for what could seem like a failure. Using the above example of no longer being able to use your legs let’s say you set your goal going forward as learning to walk again to return to your previous state. While admirable that you wish to prove medical science wrong (which does occasionally happen) it may not be the most realistic or attainable goal and if you, in fact, are unable to achieve it you will likely feel as if you’ve failed or let yourself, and possibly your friends and family, down.

In reality, you simply failed to properly plan based on the facts presented to you in your particular situation. To use another example if you are diagnosed with a mental health issue that leaves you moody and seemingly chronically depressed it may not be a good choice to pursue a career which will leave you feeling sorrow at work such as in a hospice or an animal shelter that sadly has to euthanize animals frequently.

You CAN do nearly anything that you reasonably set your mind to, including learning new skills with which to cope or work despite your limitations. The choice is entirely yours as to how to best make this happen and to avail yourself of the multitude of available resources that may be available to you. Depending on your situation there are even organizations that may help you at no cost to you. Returning to the example of your legs being paralyzed we discussed above, such organizations could include free help for job retraining, accessibility aids, or even vehicle modifications to permit you to return to work.

In short, don’t let ANY circumstances in life dictate what you can do or your outlook on how you will approach life going forward. You can set new goals, learn a new job skill, and learn to adapt to nearly anything in life given the right mental attitude, and of course the blood, sweat, and tears of your own sweat equity that you put into the effort. Set attainable goals, and let’s do this!

Have you or someone you know been through anything that drastically altered life as you knew it? How did you cope? What did you do to decide to go on with life and create a “new you”? Feel free to share your story with us below in the comments. We’d love to hear your story.

Keeping Hope Alive – #AtoZChallenge2018

 

K is for Keeping Hope Alive – #AtoZChallenge 2018

 

Today’s discussion will focus on hope and how to keep reasonable expectations of it to preserve both your physical and emotional health in regards to living life with chronic illness.

Merriam Webster defines hope in the following ways:

  • Intransitive verb
    • To cherish a desire with anticipation; to want something to happen or be true
  • Transitive verb
    • To desire with the expectation of obtainment or fulfillment
    • To expect with confidence.

There are days that nearly everyone may feel hopeless at one point or another. We are all human and we all have days where it seems as if nothing is ever going to get better, whether referring to a job, financial situation, health, or nearly any topic you could pick that directly impacts your life and happiness. The trick is not to let those days take root to grow into a larger feeling of hopelessness which can easily happen if we do not properly address the topic of hope and ultimately if you lose hope you can fall down the very deep well of despair from which it can seem impossible to climb back out of.

Take notice that in the opening line of this post I stated about reasonable expectations. This aspect of keeping hope in your personal journey or situation is key. If, for example, you have lost a limb due to an injury it would be unreasonable to maintain hope that things will go back to the way they were before the devastating injury. In contrast it would be extremely beneficial for you mentally and physically to keep hope that despite that loss life will go on, you will get the appropriate prosthetic device, and continue to live a long and productive life despite that injury.

If you suffer from a chemical imbalance within that results in some sort of mental illness it would be impractical to expect that things will simply get better on their own with no attempt at proper treatment while not acknowledging the challenges that are in front of you in hopes that they simply go away. Conversely if you are depressed due to a job situation that no longer seems a good fit for you for whatever reason, then it would be reasonable and expected to have hope that changing jobs or employers may very well address your situation and therefore improve your quality of life and happiness.

With chronic health issues it is quite easy to get lost in the quicksand of symptoms and the many impacts your diagnosis may have on your life. It is equally easy for some to begin to feel hopeless and just accept that their life is going to be horrible and there is nothing you can do about it. However I beg to point out that the only thing in life that it is unreasonable to not expect will happen is death. Inevitably death will find us all and there isn’t much we can do about it, or is there?

I offer that it is all in how you look at things. You could be the pessimist who says to yourself well my life sucks, and even if I try to make it better I’m going to die, so why bother. Or you can be the optimist and decide that despite the challenges in your path and the inevitable outcome of death, you plan to do everything within your power to make the absolute best of the time you have. I choose to be the latter for the very simple reason that I am too stupid (or stubborn maybe) to quit, lay down, and die. It just isn’t in my nature.

Are there times when things have briefly felt hopeless? Sure there are, for as I stated earlier we all have bad or challenging times. It is precisely what you do in those times will define how you as a person decide to cope with life and the challenges presented to you.

Let’s be realistic for a moment. It is human nature to want to be happy, and enjoy life as opposed to being miserable and just existing until you cease to exist. I pose it is worth the sometimes considerable effort to maintain reasonable hope that things will improve and enjoy life to the best of your ability for as long as you possibly can.

I could write volumes about specific examples and still couldn’t cover all possibilities or scenarios that could present themselves. Take a moment to apply this thinking to your life. Is there something in your life, be it related to physical health or not, that you could change to make things better for yourself? On the physical side of things maybe you are no longer able to go to the gym like you used to due to a medical issue, yet you could set a goal to walk a minimum distance each day to still provide your body with some exercise and your mind with a break from staring at the walls inside your home or office.

Take a few minutes each day to practice how to frame things in amore positive light. Sure, this takes more energy than just accepting things as they are, but isn’t your happiness worth it?

Our logo and name are designed in part around the concept that in life there will be peaks and valleys. Should you find yourself in the valley between the two mountain peaks you must keep hope that you will make it to the peak of the next mountain. Without hope there is no fight, and without life you can simply wither away both literally and figuratively.

Tell us your thoughts on hope as it pertains to your life. Do you know someone who persisted to strive for a better life despite the chronic, lifelong, and at times totally debilitating illness they were faced with? Some would call these people an inspiration which can be true as well, but they often simply kept hope. They refused to give up hope and remain stagnant in their situation.

Judgments – #AtoZChallenge 2018

 

J is for Judgments – #AtoZ Challenge 2018

 

Judgments occur in many, if not most, aspects of our lives. They can seem trivial and meaningless, but the effects can seem to last an eternity whether you are the person making the judgment, or the one about whom a judgment is being made. Before you get all defensive about the fact that you don’t feel you make judgments of others that’s great if you’ve never done it, but I would tend to believe all of us can be guilty of making a rash or snap judgment of someone else at least once in our lives.

As a relatively simple example let’s say you are at the local shopping center slowly driving through the parking lot while searching for a parking space. As you start down the next aisle in the lot something catches your attention out of the corner of your eye. As you stop to let another driver back out of their parking spot you look over to try to determine what caught your eye.

You notice a young adult getting out of a car that they just parked in a handicap spot. They appear to be walking without obvious difficulty, without any assistance, despite the handicap parking placard or license pate on the vehicle. You instantly think to yourself how wrong it is to misuse parking reserved for those who really need it. You even begin to get a little irritated at the fact that they seemed to walk into the store without a care in the world.

What you do next is what is important. See, I believe it is human nature to make some sort of judgment about others without having all the information, whether a conscious choice to do so or not. However the difference comes in with what you may choose to do next. If you get out and confront the person in a rage then those actions are not normal, nor are they accepted.

However, if you stop and think to yourself that there may be circumstances of which you are not aware, and quite frankly are none of your business unless you are a member of law enforcement, then you are on the right path. We need to give others the benefit of the doubt instead of snapping to a judgment without all the facts.

Now for the second part of the scenario, one reason this person could have parked in the specially reserved handicap parking spot is that they have a heart condition that is easily exacerbated by any exertion, of which there are many such heart conditions. Another plausible explanation is that they just had a double lung transplant and still get winded at even the light exertion of walking to the pharmacy located inside the store.

Does this sound too far-fetched to be true? Trust me when I tell you it is not. I’m personally aware of people to whom both these examples could apply. I’m guilty of making the initial judgment purely based on appearance of the situation as well, but having been the target of such judgments I also have taught myself to stop and think before going past that initial thought of a judgment.

I’ve actually had the local police department awaiting me when I returned to my vehicle because someone had called stating I was parked illegally and not entitled to use the handicapped parking space despite the placard prominently displayed from my mirror as required by law. The person who called the police made a snap judgment not only without having all the facts, but without ever having seen me. They made the judgment purely based on the vehicle I was driving, which looked very similar to an emergency vehicle due to my position with the fire department at the time.

However, as the police found out when I emerged from the store, I was on crutches and totally unable to bear weight on one leg due to a recent injury, let alone a myriad of other reasons that entitled me to legally avail myself of the privilege of such parking. Needless to say the police did not have an issue with me, but were none to happy that someone had called in such an obviously frivolous complaint.

Mind you this is just one way in which we as human beings judge each other, and probably one of the least hurtful ways in which we could do so. People make judgments of others based on any number of factors that could include race, gender, sexual orientation, religion, or even personal convictions.

As a society we need to take just a moment and at least try to consider what other points of view or factors could come into play in any given situation before me permit ourselves to make snap judgments. Sure, it’s possible that a snap judgment may even be an accurate one, but the accuracy of the judgment doesn’t make it right that we make the judgment in the first place.

Have you ever found yourself on either end of a judgment? Tell us your experiences or thoughts on the matter.

Individuality – #AtoZChallenge2018

I is for Individuality – #AtoZChallenge 2018

 

Most illnesses vary from person to person based on a large variety of factors including age, general overall health, type of illness, and even gender. Chronic illnesses act no differently and can often vary immensely between similar people with the same diagnosis, which makes sense as we are all individuals and while yes we are all human beings we are al vastly different from each other despite the biology and biologic processes being generally similar.

To try to put this into super simple perspective look let’s take a look at plants. Vegetable plants of the same type and species, for example, will typically produce a product that appears to be very similar to one another, but the end result can often be different sizes, shapes, and even color.

Human beings are no different. While our body and its systems may operate in the same general context, there are always going to be some variations in how our body may react to certain stimuli, injury, or illness. Have you ever broken a bone or experienced an injury and known somebody else that went through a similar type of injury but maybe took longer to heal? This is because our bodies react differently as well as the fact that no two injuries or illnesses are exactly alike. Have you ever had the flu and known somebody else who had it more or less severe than you did? While it may very well have been the same exact flu virus that caused the illness there are, as I said, differences.

Chronic illnesses are no different whether that chronic illness is mental, emotional, or physical. This is true regardless of the body system involved. As a result, we must be careful as patients to recognize our individuality and not put ourselves down for not responding as quickly as someone else may have, or possibly as quickly as medical science and your physician may have expected. Further our physicians and other caregivers, be they professional or family members, must be careful to recognize this same fact and not doubt or judge us for how our body perceives whatever insult it has undergone.

Spinal cord injuries are a perfect example of a more drastic nature, but one that baffles many in the medical field including specialists in the field. You can have two patients with the exact same level (in the spine) and type of injury, who have undergone the exact same treatment, maybe even surgery, to repair the injury. Yet their outcomes may and often will be vastly different.

Some people have relatively minor injuries with permanent deficits and even paralysis as a constant reminder of their injury. Yet others in the same circumstance may recover fully or have little in the way of long-lasting negative results. This difference can lead to self-doubt, doubt on the part of family, friends, and even medical providers so it is imperative that we remember that we are each individuals.

Further, it is also extremely important to set realistic goals for yourself, your recovery, and your life after a diagnosis as it is impossible to accurately predict precisely how much that diagnosis may impact your life and those around you. In the recovery process, it is a good idea to explore alternative things to occupy your mind, time, and stimulate your brain despite the medical challenges.

It doesn’t have to be anything major, but personalize the choice to you, your likes, dislikes, and things that you have an actual interest in. While it is good to pick something you know interests you don’t be afraid to explore new paths or avenues of personal enjoyment or fulfillment. As human beings, we tend to stick with things in which we have some sort of an interest and discontinue things we don’t retain an interest in.

It’s okay to explore new paths, but be easy on yourself if you find a few months or years down the road that you are no longer interested in that activity. As individuals, our tastes and preferences change throughout our lives, which is perfectly normal and expected. This is one reason why it is best to find more than one activity that you may enjoy and be able to participate in as that gives you options. Don’t limit yourself to just one thing.

Think of activities as clothing. We don’t wear the same clothes all day every day. We have a variety of clothes in our closet from which we can choose what we want to wear based on weather, mood, activity and the like. Keep your activity toolbox full of various things you enjoy whether it be reading a book, writing a book, gardening, or whatever suits you personally. Open your mind to new experiences and it will open new thought processes and activities for you to enjoy despite any limitations you feel your diagnosis may be placing on your life.

How have you kept your individuality despite a diagnosis? What do you like to do for enjoyment? Have you learned something surprising about your interests after a diagnosis that you didn’t expect?

Hope and Health – #AtoZChallenge2018

H is for Hope and Health – #AtoZChallenge2018

 

Whether you realize it or not our state of health can often be tied to our emotional state, be it good or bad. When we are depressed it is more likely that our health may feel significantly worse to us. When we are happy it is much more likely that we will pay less attention to our health issues.

Unfortunately for many people chronic health issues and in particular chronic pain or disability, can lead to depression as a result of many factors which can include grieving our formerly healthy self, or even hopelessness, or anything in between. What many don’t realize is the importance of our mental and emotional health can have on our physical health. I’m neither stating, nor implying, that our physical ailments are caused by our mind. Rather I am pointing out the simple fact that our mood and state of mind can influence our physical health.

When we are sad, depressed, grieving etcetera it is more likely that we can withdraw from others, and may find it exhausting just to force ourselves to get out of bed in the morning. If you suffer from a physical issue, the immobility can compound your problems. Conversely if you are feeling very good, happy, and hopeful you may find that while you may pay a consequence for pushing your physical limits a bit too far, that you are more willing and able to cope with the after effects due to the happiness you feel.

For example, let’s say you are like myself, and hate to be cooped up in the house all the time. However walking is painful for you. Whether consciously or subconsciously we weigh the pros and cons of, in this case, taking a walk outside in our minds before making a decision either way. While I know I will hurt more for taking that walk and forcing my body to do things it may not particularly like it is worth it to me for the boost in mood it will give me by getting out of the house.

Maybe I walk to the grocery store to get a little item we need in the house, or even to the closest convenience store for a small cup of coffee. Getting out of the house does many things for us. It gives us hope that we can still have an enjoyable life despite our challenges. It provides a basic human need for socialization. A short walk provides fresh air and sunlight and boosts our mood in ways that may not even be understood or explainable.

Last summer when we had a pool up for the grandkids, I would make myself go outside each and every day just to skim and vacuum the pool. I did this for a variety of reasons. Firstly it gave me a purpose to get out of the house on the days maybe I didn’t feel like it, hurt too much, or just plain didn’t want to. Secondly it made me feel as if I were contributing to the household by doing a necessary task even when there are some things around the house that were nearly impossible for me to do physically. Lastly it gave me hope that I could be a productive member of the household on the days when I really didn’t feel like I was.

Be mindful of your mental or emotional state an dhow it can influence your particular situation. I’m not saying everybody has to practice yoga, meditation, or any particular sort of mindfulness technique. What I am saying is to be aware of how your moods may influence your physical health, and it goes without saying that your physical health can affect your moods.

It is when we feel as if we’re stuck in a hopeless situation, as we may feel from time to time, it is imperative that we acknowledge that feeling, and address it by doing something that will give us hope. Whether it is something as simple as reading a book on the porch, taking a walk, or whatever makes you feel good about life.

How do you keep hope despite the bad or challenging days? What works for you?

Grief – AtoZChallenge2018

G is for Grief – #AtoZChallenge2018

 

Grief is most commonly thought of as being associated with death but believe me when I tell you it applies to things outside of death. It can apply to nearly any life-altering event one might go through that leaves things dramatically changed in the wake of the change.

If you are diagnosed with a chronic medical condition that will permanently affect your normal way of life you could well experience the effects of grief. Even something as minor as a new allergy to a food you love could leave you missing life as it was before the serious allergy. I know that may sound overly dramatic, or even simplistic but it is both a legitimate example and one that may be more relatable for some as opposed to one with a physical disability. Maybe you grieve your old life before a major life change such as a geographic move, or even a divorce.

Grief can be as simple as occasionally missing something or someone or as complex as being a life-altering emotion that can grip most aspects or your life and even result in physical symptoms and ailments. This is not to say that the physical symptoms are purely psychological as the symptoms could be quite real. Rather it’s that the underlying mechanism triggering them may be the result of physical manifestations of the psychological emotion.

While grief comes in a variety of forms and severities, as well as causes, it can be a normal and at times even healthy experience. It is perfectly normal to grieve and each person may experience grief differently and for differing amounts of time. There are no definitive rules or timetables for most emotional responses, and this is true of grief as well.

Grief, unlike things such as depression, often cannot be cured, or even effectively managed with medication. Some would argue that depression can’t be effectively treated solely with medication and there are times that would be correct. Grief can, however, accompany depression after, for example, an injury that leaves you permanently physically disabled, or even the loss of a loved one.

The key to managing grief, like nearly any emotion, is to not simply ignore it. It will not simply go away by itself, nor will it likely even significantly improve without some way of addressing it and its underlying cause. There are many ways of addressing your grief and the way in which you address yours may be quite different than how somebody else in a similar situation has addressed their management of grief.

I’m not going to get into listing all the potential interventions for grief as that could turn into quite a long discussion, more so than I want to get into for this post. As a simple overview, you could do anything from simply practicing mindfulness or meditation, to a support group, or even seeking counsel from your primary care practitioner, or even referral to a psychologist or psychiatrist.

Have you encountered grief in your life? If so what triggered it, and what did you do to manage it?

Food – #AtoZChallenge 2018

F is for Food – #AtoZChallenge 2018

 

You may be thinking what food could possibly have to do with managing chronic illness or chronic health issues in general. Well, I’m going to try to break it down for you in very easy ways to relate to.

The first and most obvious concern when it comes to food and nutrition is cost. If you are spending so much to simply exist and you can’t afford your medications or treatments that will prolong your life, you likely have trouble finding the money to eat healthily.

Nearly every time I am in the hospital the various members of my care team bring up the importance of proper nutrition and the importance of eating properly and regularly, especially due to the fact that while my blood sugar is typically controlled very well simply by diet under normal circumstances when I am in the hospital the medications skyrocket my sugars to where I am needing insulin to bring them back down.

I’ve educated many health professionals on the fallacy in their insistence that it is cheaper to eat healthy than most people think. Mind you I do not eat like this, but I have used it as an example on numerous occasions just to exemplify my point. I love fresh fruits and vegetables but let’s face it they are not cheap. The cost of eating healthy is much more than one might think, yet is incredibly important for our longevity and overall health.

If you price out what it will cost you for fresh fruits and vegetables, appropriately healthy meats, grains, bread, etcetera and compare it to, for example, a fast-food dollar menu or the low-cost microwaveable meals at your local grocery or warehouse store and I can tell you that it is much cheaper to eat poorly than to eat well. You could eat one item from the dollar menu at your local fast food store three times a day, using water as your beverage, and it will cost you three dollars a day. I think you’d be hard-pressed to find healthy alternatives to eat even one healthy meal for three dollars per day.

I want to be clear here, I’m not advocating that one eat fast food three times a day every day, or even once a day every day for that matter. I can tell you from experience as a healthcare provider that I have had this very discussion with patients with whom I’ve come in contact that they can’t afford to go to the grocery store for very much. They felt that by eating cheap fast food they were at least doing the best that they could to keep their food intake and blood sugars stable.

I will be the first to admit that I often do not eat properly. I realize and acknowledge the importance of proper nutrition and diet when it comes to health and wellness. I also appreciate the fact that I am essentially both poor and physically challenged in many ways. The spoon theory will be covered later this month in another post, but if you aren’t familiar with it you can surely find it via the almighty Google.

The point being if you don’t have the physical ability or endurance to stand and prepare a meal but maybe once a day, you try to find semi-healthy snacks or quick lunches to hold you over until later in the day because you know that once you expend the energy to prepare a proper meal, you will be too physically exhausted to do much else the rest of the day.

Maybe you have a condition that severely limits or even remove the ability for you to get up and make your own meals like POTS, also known as postural orthostatic tachycardia syndrome, which can make it nearly impossible to go from a sitting to standing position without passing out due to the effects on your body.

While I can’t and won’t dispute the importance of a proper diet and nutrition in overall health, I won’t sit behind my computer and lie to you and tell you that it is either easy or cheap, especially for those whom it may be most important to.

Do you have a story to share about the importance of diet and your health?

EHRs – #AtoZChallenge2018

E is for EHRs – #AtoZChallenge 2018

 

As the advent of electronic health records (EHRs) or electronic medical records (EMRs) as they are also sometimes called have essentially replaced traditional charting as well as traditional means of communication it has created the potential for a new void in effective communication between the provider and patient.

First and foremost you only get to see on the patient portal what the provider or health system wants you to be able to see. Unlike previous ways of viewing your chart, you now get snippets of the information contained in your chart prepared the way your provider and the EMR software designers have decided will best suit you, which is not always what serves your best interest. Some examples of challenges observed in the electronic age of medical records can consist of any number of the following examples.

The medication list in your chart is not accurate despite you providing them with a current list at each and every appointment. I’ve also noticed diagnoses on my list of illnesses that are grossly inaccurate. Ass it turns out the way the local health system provisioned the software for their providers they do not have the ability (called privileges in the IT world) to be able to delete an entry. In other words, once they press enter on an item like a diagnosis, it’s there to stay unless you are lucky enough to win the battle to get it removed, which trust me when I tell you it is not easy to do.

In previous eras when you were referred to a specialist, once you saw that physician they would dictate a letter to your primary care doctor first thanking them for the referral, then detailing the findings of their examination, results of any studies ordered and closing with their plan for your treatment. This traditionally kept your family physician informed as to what everyone involved in your care were doing so that a) your physician could make appropriate care and treatment decisions, and b) hopefully no details ‘slipped through the cracks’.

However with the institution of electronic health records, or electronic medical records as some regions call them, in nearly all aspects of healthcare in the present day it is very easy for things to seem as if each specialty physician is operating in a silo with none of the traditional coordination of care that the primary care physician used to be entrusted with. Gone are the routine of phone calls between physicians, and there is no longer a need to correspond via paper documents amongst different physicians. The point is that when specialists don’t communicate or take the time to investigate other physicians interactions with the patient, you as the patient often suffer from incomplete care based on incomplete information.

With EHRs replacing paper charts, the consulting physician will simply dictate a note describing his findings and plan for treatment in what’s typically known as a free text field in your EHR. As a result, unless the primary care physician specifically looks to see if there are any new entries from other doctors or advanced care practitioners you may have seen since you were last there, they may not even know you saw someone else. I am told that some EHR software systems can be programmed to notify the physician of new entries, but I’ve also heard that such alerts are often disabled though it is unclear if that is by default, or by the facility that is responsible for implementing the record management system.

Another example worthy of mention is when I was referred to a renowned teaching hospital for a specialist consult. While there the physician arranged for me to have some specialized tests done to rule in or out a suspected lifelong illness with major and potentially devastating health consequences. When I inquired as to how I would find out the results I was told they would be posted on the hospital systems mandated patient health portal and not to call the office for them.

Several weeks went by, with still no results or mention of the tests were visible on the patient portal. Eventually, against their prior instructions, I called the office and was advised that they could not locate the test results if it wasn’t in the portal but that they were sure that if they were abnormal or positive the doctor would have seen it and called me. I politely asked how he would have seen them if even they can’t find the test to give me the results. It is now nearly a year and a half later and I still can’t seem to get results of these tests.

This is the same hospital system that in their welcome letter to me informed me that it was required that all their patients download their mobile app for managing their health records and that this policy was strictly enforced. It went so far as to say that any patient who was not registered via the mobile app would not be seen. Further, when I arrived and went to the counter to check in, I was told that is not how it’s done. I must check in on the app and have a seat to wait for my name to be called.

What if I didn’t own a smartphone and was still using an older style flip phone? What if I couldn’t even afford an old out of date flip phone on a prepaid plan? While smartphones and smart devices have become the overwhelming norm, I know of plenty of people who have flip phones either by choice or because that’s all they can afford. After all, what’s a mobile phone for in the original sense of the device? It’s to call somebody. When did not having one determine someone to be unworthy of the best care possible?

Returning to the discussion at hand, the burden of ensuring that any and all pertinent information from any consults etcetera are properly relayed to your PCP now falls more heavily on the patient than ever before. This will be discussed in greater detail later this month in a separate post but you are now, more than ever, expected to be your own best advocate in your care. You must be diligent in ensuring that each of your physicians knows what the other is doing and not assume that they know without first making sure yourself that they do. You can’t rely on results being mailed to your provider at which point he will review them when they come across his desks and chart them appropriately.

One benefit to them, when the feature either works or is supported by the staff and the software, is the ability to quickly and easily request routine medication refills to be sent to your preferred pharmacy. Some EHR systems even permit you to communicate via email with the doctor’s office, though often with staff, not directly with the physician themself.

What are your experiences with electronic health records? Have you experienced any challenges with the new methods of communication?

Doctors, Diagnosis, and Decisions – #AtoZChallenge 2018

D is for Doctors, Diagnosis, and Decisions – #AtoZChallenge 2018

 

I hate to break this news to the world (or at least those visiting this blog) but doctors are mere mortals. They are not the deities that they were once revered to be. This isn’t to say that they aren’t extremely important and that they don’t hold an extremely important role in our team of healthcare professionals, but they are just that, a member of the team. Yes they may have the ultimate decision-making ability regarding diagnosis and treatment, but that should be, and in ideal scenarios is only after careful examination, consideration, and discussion with the patient and any other pertinent members of that patient’s healthcare team.

Let’s return to the aspect of the physician being one member of the team. It is extremely important to realize that you, as the patient, are also a valued member of that treatment team. You should be directly involved in any discussions regarding diagnosis, treatment options, and decisions regarding your care. It all comes down to communication. You might wonder why you should be consulted, for instance, when you have clearly broken your leg, and all you want is for them to fix it. Let me see if I can clarify this for you.

Option 1: The physician walks into your exam room and says okay, the x-ray shows what we thought. You did break X bone in your leg. We’re going to cast it for 6 to 8 weeks and give you crutches, then you’ll be fine. That’s certainly one way of accomplishing the task of treating your broken leg. However, let’s look at another example of how the same outcome could be accomplished in more of a partnership discussion.

Option 2: The physician comes into your exam room, sits down and explains that yes, his initial impression was right. You did, in fact, break your leg. Then he logs into the computer and shows you the x-rays of your leg and explains where and how you broke it, and your options for treatment, as some fractures may have multiple treatment options with varying risk/benefit scenarios. But let’s say yours is a simple break, as he explains to you. He can either cast it or put you in what’s commonly called a boot, which you may take off very briefly for bathing only, but either way you will not be permitted to put any weight on that injured leg for at least 6 to 8 weeks when it will be re-examined to determine if it has healed enough.

Once the cast comes off, it will likely feel very stiff and sore as the joint has been immobilized that entire time. As a result of this and the injury itself, you will likely need physical therapy for another 4 to 6 weeks once the cast is removed, during which they will permit you to slowly start putting weight on it again in stages, as tolerated, to prevent re-injury or further injury. Once this is all done it should be back to its pre-injury state save the fact that you’ll probably know when it’s going to rain as discomfort or even pain in your leg where it was injured.

Which of these two examples gives you, as the patient, the most complete and accurate picture of what is needed to properly treat your fractured leg and what will occur during and after treatment until you have fully recovered? Which gives you the best idea of what to expect and try to prepare yourself for?

Maybe you know that despite being told not to walk or put any weight on it, if you have the boot, you will walk on it. You can discuss with the doctor your concern and together you can all decide how to best proceed. Most physicians welcome the opportunity to have two-way dialog with their patients about their care. After all isn’t their goal to provide you with the best possible care?

Perhaps you read the above example of a broken leg and thought to yourself it’s just a broken leg, just fix it. However, before you mock my logic let’s look at another very plausible scenario which could also quite easily occur.

You’ve been diagnosed with a type of cancer that can either be extremely aggressive or very treatable depending upon the specific results of the tests and biopsies. In the visit with the oncologist (cancer physician) to determine the best course of treatment and discuss your prognosis, there are two ways it could go.

Option 1: The doctor could walk in and say this is what we’re going to do. We’re going to give you this chemotherapy drug so many times a week for two or three months. After which you’ll get radiation treatments for another 6 to 8 weeks. If you have any questions I’ll see you in a month for your first follow up, then they leave the room.

Option 2: The doctor could come in and discuss, in whatever level of detail you prefer, the results of your imaging studies, biopsies, and lab work. They can present you with the known facts about your specific type of cancer including preferred treatment options that typically result in the best outcomes, and what those ‘best outcomes’ may be. Maybe for your cancer, the ‘best outcome’ is a 15 to 20 percent chance of adding three months to your life, but death is a certainty. The side effects of the chemotherapeutic drugs are very severe on your body and will almost certainly make you vomit constantly leave you nauseated when you aren’t vomiting, and likely leave you so fatigued you will be unwilling or maybe even unable to get out of bed.

I know you’re saying this is a cruel, inhumane and horrible example to use and yes, cancer is a horrible disease. Practically speaking which scenario of the conversation with the physician provides you with the clearest, best, and most complete information with which to make a decision about how to treat your cancer?

Though the second one sounds grim and potentially pessimistic or even defeatist let me tell you that having been in this situation with someone extremely close to me I wish they had told us all these details and for that person to have had the ability to decide how he wanted to spend his remaining time instead of pumping sunshine up his rectum insisting it was all going to be okay.

It’s perfectly acceptable if you disagree with me, or don’t like my opinions on the matter. All I ask is that you honestly and sincerely stop to think for a moment before you pass judgment on the cancer scenario. Which would you prefer if it was your spouse, child, loved one, etcetera?

In closing the way the doctor-patient relationship has morphed over the years are too complex to cover in this brief post. However, both the physicians and us as patients need to learn to take a more active role in the partnership between doctor and patient and practice good, honest and open communication in order to achieve the highest level of care and best possible outcomes.

What are your thoughts on the matter? Would you rather simply be told what to do, or would you prefer to be a part of the treatment process?

Costs – #AtoZChallenge 2018

C is for Costs

 

Even those with the best insurance available will likely find that there are many things that are either not covered, not approved for coverage, or the portion of which you are responsible for is anywhere from challenging to exorbitant and thus simply not feasible.

There are lots of examples of things that are routinely not covered as what’s called durable medical equipment that to some are a mere nuisance but to others are an absolute necessity for a safe and functional life.

Let’s assume you were paralyzed and unable to use your legs. You can’t do some of the most routine tasks on your own without assistance. You have to fight to get the appropriate wheelchair, but thankfully the physical rehab hospital you were in after your injury was able to find a program that could help with that. When the ambulance crew transported you home from that same hospital they carried you up the stairs leading in to your apartment, but now you are literally stuck in your own home.

Providing you have the means you could have groceries delivered or potentially have a friend or family member bring them until you can locate a suitable first floor apartment once your current lease is up. Problem solved, right? Well not exactly. Even if you conquer all the aforementioned barriers what happens when that food you’ve consumed needs to exit your system?

I know that sounds like a disgusting topic, but bear with me for a moment. There’s a logic to my choice of topic. See here is where the durable medical equipment topic comes in. The thought of going to the bathroom may not enter your mind as an able-bodied person other than a task you simply must do in life. But as a paralyzed individual you are unable to transfer to the toilet without proper equipment. As such this is a major barrier to your safe and functional life.

However, the insurance company doesn’t cover the needed riser to go on top of your toilet to raise it to a safe transfer height, nor does it cover the equally as necessary toilet rails to provide you the handhold, leverage, and stability to prevent falls. These are both considered uncovered expenses and as such they are not covered. Nor is the wall mounted grip for you to use as a hand hold when transferring.

Without the equipment, your life now becomes a daily risk of further injury by falls purely because someone in an office somewhere decided that these items were “not medically necessary” for your proper and effective care. This is just one of many examples, one that I thought that maybe the most people could fathom.

One short example of another common scenario is obstructive sleep apnea. The proper treatment for the vast majority of cases is continuous positive airway pressure therapy also known as CPAP. The machines and equipment for these are not cheap by any means, and Medicare as just one example, covers only 80 percent of the “allowable” fees for the equipment. The first 12 months of using the machine they essentially rent it from the DME supplier, after which they consider it as paid for and it is yours until you qualify for a replacement, usually no sooner than five years.

During those 12 months you are responsible for the 20 percent that is not covered, usually up front in today’s world. This can amount to roughly 50 to 100 dollars a month you weren’t budgeting for. Then there’s the cost of the tubing, masks, filters which all wear out regularly and frequently need replaced. Each insurance provider may cover different amounts, but let’s say we stick with the simple 80/20 model used above. Some of these masks can cost upwards of 100 dollars a piece needing replaced roughly every three months on average.

CPAP therapy is quite literally a life saving treatment that is not only needed to keep you alive but can, as studies have shown, prevent other serious and even fatal complications from sleep apnea. Yet if you don’t happen to have the money available to pay for these items up front, you could easily find yourself making a life or death decision. One that if your machine breaks after the twelfth rental month and before the five-year authorized replacement cycle you will also be making.

Repairs typically aren’t covered unless the machine is either still under the manufacturer’s warranty, or still within the initial rental period. If it is broken beyond repair you, not your insurance, will have to figure out how to come up with roughly 500 to one thousand dollars to replace it.

What costs have you found to be a barrier to your health, safety, or quality of life? How were you able to mitigate or overcome these costs?