Opiates in Pain Management #AtoZChallenge

Opiates in Pain Management      #AtoZChallenge

The debate over the use of prescription narcotics in the management of pain has long been a controversial topic. This topic has come more to the forefront of late as the debate heats up in both the media and the healthcare industry. There are arguments both for and against the use of opiates. In this post, I will share my knowledge and experience as they relate to the use of narcotics in pain management.

I have had numerous experiences with both acute as well as chronic pain. I have, at times, been on extremely high dosages of narcotics in an attempt to manage the pain, at that point chronic and increasing in nature. I was on such a high level of narcotics that it was determined that it was safer and more effective to implant an intrathecal pain pump to dispense the medication directly into my spine.

This required significantly less medication to achieve the same, even better, results. Doing this enabled me to manage the pain in order to undergo intensive physical therapy towards a better quality of life. Eventually, I made the difficult and personal decision to discontinue the medications to remove the side effects and further increase my quality of life.

More recently, I had undergone multiple major neurosurgical procedures in an attempt to relieve a spinal cord injury in my neck. While in the hospital, just a day or two after the surgeries, I was informed by a pain specialist that they would only treat my pain for a maximum of two weeks. After that, I would no longer receive any pain management whatsoever.

After five days in the hospital I was transferred to a spinal cord injury unit in a local physical rehabilitation hospital. While I have become accustomed to managing a great deal of pain in my daily life over the years, I was extremely grateful to find that the rehab hospital was not subscribing to the two weeks and done philosophy dictated by the pain practitioner in the hospital. I spent many weeks recovering from the surgery and performing several hours a day of various therapies in order to improve and ultimately hopefully restore functions affected by my spinal cord injury.

It is now four months post surgery and I’ve managed without pain medication for roughly two months now, by my own choice. I’m not going to lie to you, some days like yesterday are absolutely horrible. It is a personal choice and one that only you and your properly trained healthcare provider can make together after weighing all the options.

Having worked in the healthcare field as well as having been a patient, I will admit that there can certainly be abuse of prescription pain medications. But I do not think that a blanket rule of a set number of days of therapy is the best approach. Pain is an extremely individual issue that should be handled on a case by case basis by properly educated persons. There are many factors that affect pain from the nature of the initial injury to injuries of surrounding tissues and especially nerve damage.

As medical science, the study of pain, and technology improve there are more and more interventions becoming available that can decrease the need for opiates in pain management. However some are infinitely difficult to find, and like nearly all medical treatments, are not without their own risks. Nobody should be forced to live in pain due to stigma, fear of being labeled a drug-seeker, or fear of addiction. There are plenty of ways to mitigate these risks while mitigating at least some of your pain to improve your quality of life. Many times chronic pain will never be relieved entirely, but there are a wide variety of ways in which you can improve your life either with or without the use of narcotic medications.

What are your experiences with the use of narcotics in pain management? Would you  like to share your story with us? We would love to hear from you! Please remember to be respectful as everyone experiences pain differently and we all should be treated with respect. Reply in the comments below.

Nutrition #AtoZChallenge

Nutrition     #AtoZChallenge

Proper nutrition is necessary for proper health. This often becomes even more important to those of us with chronic health issues. It becomes even more problematic for those of us with a permanent disability which forces us to live on a fixed, and often small, income.

I am neither a nutritionist nor a registered dietician. What I am is a person who have experienced the information contained in this post firsthand. While on the surface it may not seem to be logical, I assure you that it is in fact based on medical science, and I have discussed this with many health professionals over the years from nutritionists to registered dietitians, to physicians and physical/occupational therapists.

I’ve spent more time than I care to think about as a patient in hospitals than I care to think about in recent years. During and after these hospitalizations I have noticed a trend. One that I found kind of troubling during a recent forty plus day hospitalization after multiple neurosurgical procedures.

This most recent inpatient stay consisted of five days in the hospital and the majority of the remainder in a local physical rehabilitation hospital. I lost over twenty-five pounds during this entire inpatient experience, despite the fact that I often ate close to three times my normal intake. This didn’t include snacks, calories from beverages, and the like, which was also way above my normal intake. However, when I finally went home, I rapidly put on the twenty-five pounds I was so proud of losing.

I discussed this with a number of professionals, as I was flabbergasted as to how this could happen. It wasn’t drug related, for I’ve had weight changes in the past after treatment with high dose steroids, and am all too familiar with the drawbacks involved with steroids. As it was explained to me, the cause was simple. I ate more frequent and more regular meals while an inpatient. When I returned home, I went back to my old habits of eating only once a day on average.

It was explained to me that, similar to what is taught to a diabetic, smaller more frequent meals are better for the body. I am told it has to do with regulating blood sugar levels and the spikes of blood sugar. It was also explained to me that when you only eat one significant meal that in between your body goes into a type of starvation mode. This causes your body to store more of the energy for later use, which can turn to fat. By eating regular balanced meals you can avoid these spikes and plateaus which allow your body to more efficiently manage the items you ingest.

While I’ve both been taught this, and learned it from previous experiences, I had never encountered such a drastic example of how this happens. I had lost similar amounts of weight in previous hospitalizations but had always attributed it to how ill I had been. Conversely, I had gained some of the lost weight back after returning home. However, this was the first time I could definitely say it was not due to how ill or bedridden I had been. This had prompted me to do the research and share this story with others who may have experienced it.

Have you experienced a drastic weight change during or after a hospitalization? Please share with us in the comments below! Are you a medical professional who can explain it better than I have? By all means, feel free to do so!

The Mask We Show Others #AtoZChallenge

The Mask We Show Others     #AtoZChallenge

Chronic illness often forces us to create a mask that we show to others. This mask allows us to hide behind it and not to reveal the true nature of how we feel on a given day. Why would we do this you ask? Well, let’s delve into that and see if we can shed some light on the topic, and the mask itself as well as what we may be hiding with it.

Regardless of how great a support system we have, we tend to hide the worst of what we are feeling to one degree or another. We try to protect those closest to us from the depths of our suffering. We may feel as if we are a burden to them, and as such decide to attempt to shield them from how horribly we really feel. We may be concerned that they are beginning to feel as if everything in the relationship (whether parental, sibling, or significant other) revolves around us. We may even feel that they would be better off without us in the aspect that they could return to some semblance of a normal life.

Regardless of your reasons, we all put on a mask at some point and for some people. I often wear a mask for the simple reason that even the most caring of friends and family must surely get tired of seeing the pain on my face or hearing how I feel as if my body has betrayed me that day. While those of us battling chronic illness have our own set of unique problems, those that care about and for us have an entirely different set of problems.

I am neither condoning nor condemning the use of a mask. I am simply pointing out that each of us will likely use a mask at some point in our battle with chronic illness. Whether we simply say “I’m tired” when what we really want to say is “I hurt so bad I can’t even begin to explain it to you”. I won’t digress into the pros, cons, or reasoning for or against the use of masks. for that is way beyond the scope of this short blog post. What I can tell you is that nearly everyone with whom I have ever come into contact uses a mask at some point and to varying degrees.

I, myself, am guilty of using a mask at times. I find myself doing this with both friends and family. If you have an invisible illness then I am willing to bet that you also make use of a mask at times. This is much more likely on the days where you may outwardly look well, but on the inside feel horribly beyond what words can even begin to describe. And you likely get tired of trying to explain the disparity between what you look like and what you feel inside.

Do you have a story to share with us about your use of a mask? Who do you show your mask to? We would love to hear it in the comments below!

Loving Yourself #AtoZChallenge

Loving yourself     #AtoZChallenge

As a general rule, loving yourself is a necessity of life. Not the egomaniacal form of loving yourself mind you. But the kind of love you hold for yourself regardless of your physical abilities or health. The kind of love that permits you to not be perfect, providing you are doing your best in the given circumstances and situation. When you are chronically ill it can become a challenge to love yourself, and this is when you must do so more than ever.

When you can no longer do the things you used to, whether for work or pleasure, we tend to be harder on ourselves than others. When you don’t get the feeling of fulfillment from being good at your job, let alone being able to perform your job, we can wind up beating ourselves up emotionally. When you are faced with seemingly insurmountable challenges, it is easy to become overly hard on yourself.

More than ever before we must learn to put ourselves first in order to best take care of ourselves both physically and mentally. When we fail to realize that our body has new restrictions or needs, and we push past those so-called safe limits we wind up abusing our body instead of respecting it. While embracing the changes we face, and grieving the loss of our former selves, we can tend to internalize the negative emotions. This is detrimental in the obvious emotional aspect, but also physically as it can manifest into physical symptoms and complaints.

When facing a major medical event, it is more important than ever to all yourself to be human. Permit yourself to grieve your former sense of self, whilst creating a new one founded on your current limitations. Perhaps you are unable to physically perform in the way you have become accustomed. While certainly tragic, you are no less of a person than you were before. You must find the way in which you can still feel useful. Can you use your previous experience to create positive change in an industry? Can you use the knowledge and training towards educating others?

We must embrace who we have become, including any limitations we may have, and allow ourselves to be human. If you have a bad health day, allow your body time to rest without emotionally beating up on yourself for something that a is outside your control. Permit yourself a mental health day to step back and regroup should you need to do so. Then when you’re ready, get up, set your sights on a reasonable and attainable goal, and do your best to accomplish it. If you complete it, celebrate your victory!

What happens if you feel like you’ve failed you may ask? Well, you celebrate your attempt to accomplish it and realize that some things are out of our control. However, how you treat yourself is not only within your control, but it is a skill you must learn to use properly. If you need help to learn or re-learn how to effectively practice self-care and love yourself, there are a wide variety of resources available to you depending upon your situation and beliefs. Reach out to your primary care physician, a physical therapist, psychologist or even your clergy. There is no single right way to do this, we must each learn what works for us, and it is often a process based upon trial and error.

Do you have an experience regarding learning to love yourself again after an illness or injury? Share your experience below so that others may learn from it as well. We’d like to hear it!

Kindergarten? Relearning How To Live After a Life-Altering Diagnosis #AtoZChallenge

Kindergarten?      Relearning How To Live After a Life-Altering Diagnosis     #AtoZChallenge

When one learns of the diagnosis a significant chronic illness or injury, oftentimes they must learn the basics of life again. What do I mean, you may ask? Let me try to explain.

In kindergarten learn how to live and function among our peers and in the world as a whole. We learn increased balance and movement, more effective communication skills and how to use words to convey our thoughts appropriately. We learn how to work and play well with others. We learn the importance of self-care through naps. The last one may sound silly but bear with me.

When we are diagnosed with a life-altering illness or injury we are suddenly faced with a number of challenges. First, we need to learn how to live and function again, given our new situation and our new limits on our ability to function as we have become accustomed since we were young children.

We must learn to communicate with both our peers as well as those who are charged with our care. We must learn to do so in a clear, concise, way. While we are trying to learn how to communicate things our mind and body have never fathomed before, we must also learn to do so in an entirely new language. A language whose subtleties often elude those who have studied it for years to become the professional charged with your care. Not only are we, as patients, expected to learn and use it proficiently, but one without so much as a tutorial, Rosetta Stone, or even Cliff Notes. Further, our family and friends who participate in our care are also required to learn it, and use effectively use it to help us describe our symptoms that frequently even our physicians fail to understand fully.

We must become experts at pleasing our caregivers in order to achieve an appropriate diagnosis, treatment, and care. While we may become so frustrated with our inability to communicate the symptoms that we don’t truly understand how to describe, we may become so extremely frustrated that we feel like throwing a tantrum. However, we learned in kindergarten that this behavior is not appropriate nor acceptable. Pleasing our caregivers can apply to submitting to treatments you may not want in order to be able to rule out the provisional diagnosis so that you can get back on track towards finding the proper diagnosis.

We must deal with the very real loss of many of our former friends who fail to have the capability to understand or deal with our current medical situation. We must further learn how to make new friends who not only accept us as we are but often have a firsthand knowledge of our predicament. We must learn how to deal with the frustration, anger, denial, and flood of other negative emotions through constructive means. These may consist of talk therapy, biofeedback, stress management, or even such things as art or music therapies. This consists of learning a whole new way of life. A life we learned how to live when we were young children. Now, it seems, very little of that pertains to your new life.

All of the things we once took for granted as normal from a very young age, suddenly seem to have little bearing in our lives. Suddenly we find ourselves struggling both emotionally and physically to function from one day to the next. Then as if the injury isn’t enough, we are further insulted by being unprepared to manage our health in a system that requires us to be our own best advocate by doing our own research. This is one of the primary reasons I am so passionate about patient self-advocacy and empowerment.

Do you have a story you’d like to share about how you adapted to a new lifestyle after a life altering diagnosis? Please let us know in the comments below.

Just Don’t Say It! #AtoZChallenge

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

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

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

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

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

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

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

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

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

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

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

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

Inspirational #AtoZChallenge

I is for Inspirational

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

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

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

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

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

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

Hopeful vs Hopeless #AtoZChallenge

H is for Hopeful vs Hopeless

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

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

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

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

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

Giving in vs. Giving Up #AtoZChallenge

G is for Giving In vs Giving Up     #AtoZChallenge

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

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

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

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

F is for Keep Fighting! #AtoZChallenge

F is for Keep Fighting!     #AtoZChallenge

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

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

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

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

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