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?


Barriers – #AtoZChallenge 2018

 B is for Barriers


When one thinks of barriers often the logical assumption is physical barriers followed by the question of barriers to what exactly. Barriers can take many forms including the obvious physical form but also may well include psychological, medical (health), and even spiritual depending upon your belief system. These barriers can be ones that are real, in the physical world or perceived. They can be tied to many aspects of life despite one’s state of health in many socioeconomic ways such as race, ethnicity, financial status, and job status to name just a few.

To say that any one of these is more important than another would be inaccurate as to the person perceiving the barrier it is most certainly important, and as such can manifest itself as a psychological barrier in addition to the perceived barrier. But rather than continue to digress in explanations, let’s explore a few potential barriers that may pertain to someone with a health issue, whether chronic or acute.

Let’s say that your leg is injured at work through no fault of your own. Your employer’s insurance carrier does not want to cover your medical care, treatments, or lost wages. You have a spouse, children, car payments, and a mortgage that all need the income you were bringing in. You have no choice but to seek legal counsel so you consult with some trusted friends who recommend a local lawyer who specializes in worker’s compensation cases.

You finally break down and make the call to the lawyer. He speaks with you on the phone for quite some time, and you feel confident that he can help you so you schedule an appointment with his secretary. You arrive at his office on a major street here in Anytown, USA and get out your crutches as you are unable to bear weight on the injured leg and proceed to work your way down the block while searching for the proper numerical address. As you look up the walkway towards his office and you realize there are many stairs and no ramp that you can see.

You get back in your car and go around the block searching for the possibility of a ramp to the rear of the office. No such luck. You go back to your original parking spot and slowly and carefully make your way up the stairs into the office as you wonder to yourself why any person, let alone a lawyer who deals specifically with injured people, some of whom are in wheelchairs, would have such an office setup.

This is a very real scenario and one that happened in real life. One that happened to me. This is just one example of a barrier, albeit a physical one, but one that is real nonetheless and physical barriers are encountered nearly any day, anywhere in the country.

Other barriers that bear mentioning, which is where my original thought was for this article when I originally chose the topic include the obvious insurance or cost aspect of obtaining healthcare. One’s mental attitude towards the situation being faced can also be a barrier. While depression is very common in either acute or chronic illness if it is not properly treated it can lead to despair, which can be one short step away from hopelessness. Do not isolate yourself, seek counsel in friends, family, or even professionals but do not attempt to ignore the barriers that may lie in your path. Ignoring them will not make them go away.


What barriers do you face, or has someone you know faced? How did you mitigate or overcome the barrier?


A is for Accessibility


When thinking of the topic of accessibility most people tend to think in terms of physical access in public spaces. While this is definitely a legitimate and very important aspect of accessibility and one with which many people must contend, I would like to broaden the consideration of accessibility.


Think, for a moment, of the individual with health insurance, but without dental insurance. The age of this person is irrelevant in the aspect that it could just as easily be your 18-year-old brother, sister, or cousin just as easily as it could be your middle-aged or elderly person, be it a stranger or a family member.


Let’s say, for the sake of this discussion, that this particular person has a health, medical, or dental condition that precludes them to very soft teeth, resulting in cavities, which left untreated begin to erode the tooth. As much as they might want to seek dental care it is nearly impossible while living paycheck to paycheck, and simply trying to pay enough of the bills to escape being homeless, and occasionally even eat a little bit.


Even with stellar credit, most healthcare providers, which can and should include dentists (among other professionals), are reluctant at best to provide any services on a payment plan unless it happens to be through a pre-arranged third-party credit provider. Even then unless you have superb credit and typically a large amount of cash for a down payment, you may easily find yourself out of luck.


Okay, let’s assume one is able to ignore the pain of the cavity as it continues to grow, and as time goes it further erodes and weakens the already damaged tooth until you can no longer simply ignore the pain. As the pain worsens you feel what seems to be a lump on the side of your face in the area of the tooth in question.


Unable to manage the pain anymore you visit your primary care physician who, while sympathetic, explains that there is little he can do to help you short of possibly writing a prescription for antibiotics. They further explain that the antibiotics may well solve the immediate problem of the infection, but as eroded as the tooth (or maybe even teeth at this point) is the only solution is to have it extracted.


You explain that you don’t have dental insurance and the wait list for any type of so-called reduced fee care is a minimum of a 12 to 18 month wait, and that you must have a few hundred dollars up front as the dental students will do the procedure of the extraction for free through the teaching hospital or dental school, but the cost of the supplies for anesthesia, local or otherwise, are not included in that service.


You’ve already lost time from work to visit your PCP, but you forego paying a bill to fill the prescription for the antibiotics hoping it will buy some time. A period of time goes by during which you think maybe, just possibly, the nerve has killed itself or otherwise been damaged beyond repair as it no longer hurts like it did. Then one day while at work you notice a vague pain in your jaw, very unlike the previous infection, but you also notice that when you look in the mirror there is noticeable swelling on the side of your face where the pain is.


Unable to afford any more time off from work you decide to simply take over the counter pain relievers. They work for a while, at least a little bit. Eventually, as time goes by you feel generally ill. You no longer smile at work because the broken teeth are visible. You withdraw from family or social functions because you are self-conscious that you will be judged harshly for the state of your teeth despite still dutifully brushing what’s left of them two or three times per day.


One day you become so ill that your boss takes notice and sends you home stating that you can’t return to work without a physician’s note stating you are cleared to return to work. You’ve tried for months, maybe even years, to get the dental situation remedied, but there are no resources to help you since dental is typically considered “cosmetic” by many.


Eventually, you resign yourself to the fact that you now have no choice but to go to the emergency room, where you are promptly admitted for not a simple tooth abscess. You think to yourself that while this is not ideal, you will deal with being in the hospital for a few days worth of IV antibiotics.


The admitting doctor explains to you that this is no longer a simple infection. It has progressed beyond your mouth and jaw. For that matter, it has progressed beyond your head and neck. You are being admitted for sepsis, which when untreated can result in life-threatening and yes even fatal consequences.


My question to those reading this is how can this happen in the United States healthcare system, which is often touted as being the best in the world? What does it say about us as a society that we will let people suffer until it becomes a life-threatening issue, and then we’ll step in rather than offering them a hand when the rest of the consequences could have easily been prevented?


There are no right, wrong, or simple answers to this, or many of the topics I may bring up. Rather they are designed to make us stop what we are doing, think about the other point of view, and ponder what we can all collectively do together to change things. Don’t think this can happen to you or someone you know? Think again for it happens regularly and more often than you would like to think.


What are your thoughts? What can we do as either the patient or society to prevent this from happening?

#AtoZ Challenge 2018 – Theme

Well, I’m running a bit behind but nevertheless, I am participating in the challenge this year. It will be my second year participating in the #AtoZChallenge and I am looking forward to it.

The theme for this year is a variant on the theme from last year. Last year my posts tended to focus on chronic health as an individual. This year my hope and goal is to focus more on managing life with a chronic illness. Some posts, however, will be more geared towards making you, the reader, stop to think about a particular topic from other points of views you may not have thought of before.

To those visiting from the #AtoZ Challenge thanks for participating in the challenge with me. For those who may come across this via Facebook or other sources a hearty welcome, and hope to see you again!

Reflections – #AtoZChallenge 2017

#AtoZChallenge – Reflections 2017

I feel compelled to beg forgiveness for the lateness of this post, as I have been feeling a bit under the weather for quite a few days, and as such was unable to complete writing this and would much rather post late than share an incomplete post.

I first heard about the AtoZChallenge just days before last year’s challenge. However, I was very leery of trying it as I had just begun trying to write more regularly, and did not have the time to commit to it last year. Fast forward to this year, and I felt much more prepared to participate. Admittedly, I was extremely nervous as I had never participated in anything like it. Despite the controversy over the discontinuation of the link list, I couldn’t be more pleased with my decision to participate.

Like many people, I was previously very reluctant to share much of my writing lest it would be less than well received. What if it came across wrong? Would I alienate some of the people I was trying to reach? There comes a time in any writers’ life when we must essentially decide that we are willing to take the risk and put ourselves out there. That doesn’t mean we aren’t nervous about the potential outcome. It simply means like many things in life there comes a time where we face a decision. We must either share our writing and put ourselves out there or give up on the dream of sharing it.

So as March came to an end I began preparing a list of topics, following the A to Z Challenge naming conventions, that I felt would be well-received. I decided that I would focus my efforts on chronic illness, patient self-advocacy, and empowerment. There are many, many topics I could write about, ranging from a seemingly never-ending list of specific chronic health issues to patient engagement and how to create a partnership with practitioners to improve your quality of life.

While I changed my mind frequently in order to present topics I felt would best serve those goals, I remained optimistic that I could keep things positive, and focused on the general topic areas and keep it both relevant and general enough to apply to most anyone who may read my posts. There were days I felt I struggled to keep from going into too much detail. My first post was relatively long, and I found out quickly by reading many other blogs that if I wanted to keep participants interest I needed to keep the posts relatively short.

Those that read multiple blogs per day did not have the time to read a lengthy and drawn out post, despite the importance of the information contained therein. So after the first day, and myself trying to read many blogs per day, I decided to try to trim my posts to approximately between three and five hundred words per post. This proved challenging at times because I felt some topics were difficult, at best, to explain adequately within those limits. I was concerned I would actually lose readers.

To my amazement, I received a great deal of feedback throughout the month. I can honestly say that I don’t think I had any overtly negative comments. I encountered many interesting blogs. I tried to visit as many other AtoZ participant blogs as I could and thoroughly enjoyed each one I was able to visit. As much as I hate to admit it, there were nearly three hundred posts a day that I saw commenting on the daily AtoZ post of the day, and it was absolutely impossible to visit as many as I would like to, let alone all of them. I plan to continue revisiting the daily posts to scour out more blogs to visit as the days, weeks, and months continue.

I am quite pleased to have participated in the challenge. I am extremely grateful to the people in the writing group to which I belong, for without their encouragement and support I likely wouldn’t have had the courage to participate in my first challenge. I also look forward to continuing to visit blogs and continue networking and enjoying the works of others. I hope that this is the first of many such blogging challenges I can participate in.

Zebras #AtoZChallenge

Zebras     #AtoZChallenge

There is nothing more frustrating as a patient than having a provider look at you and summarily discount your symptoms as ‘impossible’. It is very common that we are hesitant, even afraid, of that which we do not understand. It is also true that those trained to diagnose and treat us could and should be held to a higher standard.

It is to them we look when our body revolts against us in ways which we do not understand. It is them to whom we turn when we feel our body couldn’t possibly be destroying itself as it seems to be doing. It is our physicians we look to for an answer of that which we cannot make sense of on our own. And that is how it should be for they are the ones with years and years of education and experience upon which to base their examination and diagnosis.

However, when learning the science of medical care, they are often taught to think of the most common diagnosis first. While on the surface this makes sense, oftentimes they fail to diligently pursue our entire history and symptoms in order to make a proper diagnosis. As with anything in life one must take into account all pertinent information in order to make a proper determination as to what is happening.

A phrase often used early in one’s practice of treating other human beings is “when you think hoofbeats think horses, not zebras.” While this may work in the majority of cases, I assure you that it does not work well in every scenario, nor should it be expected to. A better way to phrase this lesson would be “when horses no longer make sense, start thinking zebras”.

Frequently when a physician actually takes the time to perform a full and complete exam and history they are left at a loss as to precisely what the cause may be in their more complex population of patients. That is because those of us with complex medical problems do not present as the typical patient. Our symptoms may not even make sense presenting with each other. Nevertheless, we are very real and so are our symptoms. We deserve to be believed and to have our complaints and symptoms taken seriously regardless of whether they make immediate sense or not.

Both when working in patient care, and while being a patient, I have encountered too many stories of people suffering for years prior to receiving a true and accurate diagnosis. While it is true that sometimes a proper diagnosis eludes medical science, it is also true that sometimes when a diagnosis isn’t readily recognizable, we as patients suffer. Sometimes we suffer needlessly when just a little perseverance on the part of our medical professionals would provide an answer. Other times a diagnosis just isn’t possible.

My suggestion to medical professionals is to be willing to consider zebras when horses no longer make sound medical judgment. Don’t be unwilling to consider the obscure. Be more than willing to advocate for and on behalf of your patients right to proper diagnosis and treatment. Above all else, do no harm. For when you dismiss us, you are often causing irreparable harm physically, medically, and emotionally.

Do you have a story you’d like to share regarding a challenge in obtaining a proper diagnosis or treatment? Please share with us in the comments below.