Happy New Year – Are You Ready for 2018?

Hello and Happy New Year!

Now that we’ve managed to get through the craziness of the holidays, we can focus on the new year, new goals, and new tactics to manage your health challenges. Are you sick and tired of being sick and tired? Are you tired of your health condition(s) taking over your life? Are you feeling as if there’s no hope of improvement of your personal health challenges?

You’re not alone. These feelings are not only common amongst people like us who battle chronic illness on a daily basis, but they are also markedly increased during this time of year. This is for a variety of reasons, some of which include the inability to get out if you live in cold weather climates, which can lead to a feeling of being even more isolated from friends, family, or even people in general.

Fear not, for one of the focuses this year will be to focus on things we can do to mitigate those feelings, and improve our overall physical, and yes even mental health. No, I’m not about to tout the latest wonder drug for a particular illness or condition. What I plan to share over the course of this year are some simple items that you can undertake in order to empower yourself with positive ways in which you can control how you respond to the challenges you may be facing.

Mind you, there is no one single strategy, tool, or even medication that will necessarily cure each and every one of us regardless of our individual health challenge, even if we were miraculously all facing the same exact challenges. We are all individuals, and as such we each receive, interpret, and implement even the same exact tool, technique, or treatment in varying ways with varying degrees of success. As a result I encourage each and every one to not get discouraged if one or more of these suggestions do not seem to work for you.

First it is important to remember that many things, including medication that offers a cure, take time to work. Do you quit a medication the first few days you take it if you don’t immediately feel better? I highly doubt you do, and if you do you will certainly never achieve acceptable results or improvement as you didn’t give it a chance. Try a technique, treatment, or tool and take notes of how you felt after trying it. Document your journey. In this way you can honestly gauge how you feel after giving sufficient time to see if a technique works for you or not.

In addition to sharing tools to aid you in managing your overall health and well-being we hope to be able to meet with professionals in order to share insights into various treatment programs that may exist for those with a particular condition or illness. There are a great many programs that exist that even some professional practitioners in the healthcare field may not even know exist.

We also hope to gather more insights from you, the visitors to the site. Are you aware of a tip, trick, or tool that helped you personally? Reach out to us via the contact us page, and let’s see if it is something we could share with others. Have you attended a particular program or clinic that helped you with your ability to manage life with your chronic illness? Write to us and share it with us so that others can also learn about the availability of such programs.

Above all else, remember that There is Always Hope!

Let’s make 2018 our best year yet by supporting each other, sharing our experiences with each other, and improving how we manage our day-to-day lives while trying to decrease the negative effects on us, our loved ones, our families, and our friends.

Invisible Disabilities NPR Article

I originally came across this article via NPR a year ago, and shared it from my personal page. Today Facebook reminded me of the original share, and I realized that it is still just as true today as when I shared it originally, as well as when NPR first published it in March of 2015.
Last night I had a conversation with a friend about the importance of the evolving field of palliative care, in that it is no longer for strictly terminally ill people on hospice care. The field of palliative care medicine is changing rapidly to include quality of life issues, as opposed to strictly end of life care.
But I digress. While I plan to cover the palliative care topic in a future post, this post is focusing on invisible disabilities and the challenges faced by those who have been diagnosed with them. I am one of these people with an invisible disability. If I happen to be having an extremely good day and am able to ambulate even a short distance without my cane, the only obvious sign of anything amiss would be an altered gait.
I regularly encounter dirty glances, stares, or even outright accusations of faking when someone sees me get out of a vehicle in a handicap accessible parking spot. This is regardless of my ability to ambulate, or even when I must resort to using a wheelchair for mobility, as I’ve had to do off and on for a great many years. It is worth noting that the days where I have an obvious assistive device such as a cane, walker, wheelchair, etcetera, I seem to get the questioning looks less frequently.
But if I have a good day and try to go to the store and not use the cane, I notice I seem to get more stares and sometimes downright nasty looks. I’ve had both the general public as well as occasionally employees of a store I am patronizing question me as to my right to use the accessible accommodations afforded to people like myself under the law.
I’ve even had numerous occasions over the decades, where what I can only assume was a well-meaning citizen actually called the police to complain that I had abused a spot that someone else could use. While these situations have always worked out in my favor with little more than embarrassment at the fact that I was stopped and questioned in a public venue by police, this is not something that I should have to endure.
Granted, I would rather deal with a polite, respectful agent of law enforcement tha  an irate, confused, or misinformed citizen who is not willing to be open-minded. However the fact remains that there are procedures for obtaining the privileges afforded to those with disabilities under the law, such as disabled parking placards, or license plates. As such, while I am sure abuses do occur, and I have seen it firsthand where a family member may use a disabled person’s vehicle or parking placard, I’d like to believe that this is the exception, not the rule.
It’s a shame….
The fact remains that if people can’t see an obvious disability, the typical reaction is that a disability doesn’t exist. It’s a shame that we’ve become a society that is so superficial that we either can’t, or won’t, take the time to look beyond what the eye can see. When will we finally begin to give our fellow human being the benefit of the doubt? When will we, as human beings, take the time to get to know more about someone who may be suffering with an invisible illness? I’d tend to bet that most of us know at least one person in our lives who struggles with some degree or form of an invisible disability / illness, that we may be very surprised to learn that they are dealing with.
 
We have become so entrenched in our own personal rat-race of life, work, and family that we often fail to notice or even care about the existence of such disabilities in others. This often holds true, even to those with whom we would consider ourselves close.
 
What are your thoughts on how we can try to change this?
 
Read the article below for more information by NPR:

People With ‘Invisible Disabilities’ Fight For Understanding

D is for: Denial to Discovery

D is for Denial to Discovery

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

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

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

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

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

#AtoZChallenge

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

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

An Interesting Perspective on Delirium…

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

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

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

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

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

The invisible work of a patient…

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

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

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

Big changes coming – SOON!

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

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

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

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

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

Inpatient Mental Health Just As Important As Physical Health

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

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

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

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

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

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

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

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

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

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

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

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

We Are All Dying…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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