#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!

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.

Keep Fighting!

Credit: Keep The Plug In The Jug – Facebook

We are all fighters, but even the best and strongest of us can and will have times where we may feel as if we are fighting a battle we simply can’t win, and this can lead to feelings of hopelessness. Feeling like this doesn’t make us weak. It doesn’t mean we want to give up, or that we wish to die, or as some healthcare practitioners may incorrectly decide that we are suicidal. This is furthest from the truth! We aren’t giving up, we are simply having a more challenging day than usual. What these feelings do mean is that we are all human and as such are perfectly entitled to feel this way from time to time.
We must all find what works for us as an individual to get through these types of days while still in one piece physically, mentally, and emotionally and all three aspects can and do affect each other and can create a vicious downward spiral if ignored. Reach out and talk to someone. Write a journal. Listen to music. Go for a walk. Meditate. Scream. Diaphragmatic Breathing.
Find what works for you and do it. Practice it even on good days so that it becomes second nature when things start building up for you. By doing so when you feel a shift towards this type of day you have an arsenal of techniques with which to try to mitigate the effects of fighting chronic illness on a constant basis. Even the strongest of us aren’t immune to, as I call it, “being sick and tired of being sick and tired”.
What do you do to cope? What’s your go-to strategy for coping on a rough day? Please share in the comments below so that maybe someone else who reads this can benefit by learning a new coping strategy. Please take a few seconds to share how you cope, and maybe, with just a bit of caring and compassion by sharing what works for us, we can help even one person avoid feeling hopeless. I found this image on “Keep The Plug In The Jug” Facebook page (you can go there by clicking the photo credit). While their original post was specifically addressing the issue of drug and alcohol abuse, I find it extremely fitting to any of us that battle chronic health issues or even those that care for us such as a spouse or significant other.
I’ve heard the phrase “just take it one day at a time” too many times over the past few decades. However when you don’t think you can get through the next hour, for example, thinking of making it through a whole day when you feel like this can seem insurmountable. I recommend breaking it down even further into the smallest chunk of time that makes it seem manageable for you at the time. It may be making it through your 8 hour work day. It could be just making it to lunchtime. It’s even okay if you break it down to 30, 20 or even 10 minutes. If it works for you I don’t care if you break it down into seconds. Just find what works for you and practice it so when you need the coping mechanisms they are already ingrained in your brain.
I’ll even go first: Besides trying to do some deep breathing exercises or even a mini-meditation of even 3 minutes to clear my head, music has always been my go-to for stress relief. I have several playlists to chose from specifically to pick me up on a rough day. One is even called “Mental Health”. If I combine relaxation techniques with a song or two from this playlist I can often ground myself quickly, reducing stress and pain at the same time.
Your turn to tell us what works for you!  Let’s stick together and help each other!  I look forward to hearing what works for you!

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

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.

Your Mental Health #AtoZChallenge

Your Mental Health     #AtoZChallenge

When discussing the issues of chronically ill people, some of the topics most thought of include physical health, access to affordable and appropriate healthcare, and general accessibility. A very important, if not overlooked, topic is the mental health not only of the chronically ill person, but those who may help to care for them. All too often mental health gets significantly less attention than ones physical health, and is often less likely to be as available through medical insurance.

Our mental health often gets pushed from the forefront for a variety of reasons. One reason could be denial. One may have the mindset that mental health will simply improve when physical health either improves or at least levels out. This is a dangerous approach not only because your mental health is important to your physical health (and vice versa), but also because denying ones problems generally doesn’t work.

Maybe those in your life don’t understand your physical health challenges. They may either intentionally or unintentionally make comments that further degrade your mental health. Comments about how all you do is “sit around”, or how you never do anything anymore. Often not intentionally meant to hurt you, they can be born of a lack of understanding about your health.

Other reasons you may experience these comments could include inability to understand fluctuations in your health and associate limitations. In some cases, a loved one could even become extremely frustrated or resentful of you and the added stress of your illness. Maybe the loved one who resents you is your spouse? But you are unable or unwilling to leave as they have stuck by you nearly your entire life. Maybe you now feel that it would be best for them if you weren’t there anymore to make their life more difficult.

Most of the above reasons can be addressed through quality, open, and honest communication. Be careful not to do this in the heat of the moment, as it will often not resolve anything. Attempt to address their concerns as legitimate. Be sure to point out that you are all doing the best you can in a difficult situation. Explain (nicely!) that the comments make you feel even worse, and may make you less willing to make the decision to attempt to do things that will knowingly cause you pain. Maybe you’ve been trying to do what you can to help out with household chores. But when you hear these comments, it is extremely difficult to make yourself want to endure the physical pain of standing to vacuum, if you feel like it won’t make a difference anyhow.

I recently heard the story of a local young woman who suffered a terrible, and permanent injury. Her only choice when she was discharged from inpatient care was to move in with a family member. This particular family member is reported to be extremely emotionally abusive. Try as she might, this young woman has been unable to find any available resources to help her due to the level of care she requires.

While I certainly do not purport myself to know all the answers, I can tell you that it is imperative to do everything in your power to ensure not only your physical health, but your mental health. Many conditions can be aggravated by depression including your ability to perform physical activity when you are able.

It is necessary to ensure you get appropriate mental health care. This is regardless of whether that care includes psychological or even psychiatric treatment with medications. Sometimes just talking to a knowledgeable and experienced psychologist can give you a viewpoint you hadn’t thought of. By keeping an open mind, you can often learn more constructive ways to manage the negative feelings without emotionally degrading yourself. Above all else, if you are in some sort of abusive situation, you need to seek out any and all available resources in an attempt to remove yourself from the potentially dangerous situation.

Have you had a loved one make negative comments that hurt you? How did you work through it? We would love to hear your story and how you overcome the emotional challenges of your chronic health battles! Please share with us in the comments below.

X-Rays #AtoZChallenge

X-Rays – They Don’t Show Everything!     #AtoZChallenge

Whether we suffer an illness or injury, often one of the first methods to look at the structures inside the body is often an X-ray. This is regardless of whether the suspected injury will show up on an X-ray or not. There are many forms of radiological studies which physicians can use to evaluate the nature of your particular complaint, illness, or injury. Let’s use a simple example to expand upon this concept.

You manage to trip over a toy when walking through your living room. Your ankle and foot hurt, but that’s understandable because you felt it roll as you tripped. You do everything you should have done, and applied ice and elevated it to reduce swelling. You stayed off it as much as possible for the next day or so, but to no avail. So after a few days, you wind up going to get the injury evaluated.

An X-ray is ordered. You think that this shall provide an answer. While you may be lucky and it will, the physician already explained that his exam has him fairly convinced it is a soft tissue injury as opposed to a fracture. But to be thorough he ordered the X-ray. Of course, the x-ray did not show a fracture. Given that soft tissue injuries are extremely difficult to discern on a standard radiograph, this isn’t entirely reassuring. The physician orders an MRI of the injured area, prescribes some anti-inflammatory medication, and crutches. He explains not to put weight on it until after the MRI and tells you to follow-up in a few weeks if it isn’t better. He states you can call for results of the MRI if his office doesn’t call you within a few days of the test.

You go home and attempt to schedule the MRI as your doctor ordered. However, the earliest appointment you could get is nearly two weeks away. So you attempt to resume as normal a life as possible while you await the date of the MRI appointment. It isn’t feeling much better at all. In fact, it feels worse, and you still can’t bear weight on it beyond just resting your foot on the floor. Thankfully you at least have a job that you can sit at your desk, as opposed to a physically demanding one where you need to be on your feet, else you wouldn’t even be able to work.

The afternoon before the day of your test, you receive a telephone call from the MRI facility. Apparently, they attempted to get approval for your MRI from your health insurance, and it was denied. The insurance company insists that you get a CT scan instead. After leaving messages three days in a row the nurse at your doctor’s office returns your call inquiring if the doctor would write a prescription for the CT scan. She explains that the doctor said that the CT scan will not show what he needs to visualize, and insists on the MRI. You explain (again) that the insurance denied the MRI. The nurse says she will talk to the doctor again and get back to you.

The following week you finally hear back from the doctor’s office. They inform you that the insurance company denied the MRI. “No, really, ” you think to yourself as you bite your tongue. “Now what?” you ask the nurse. She proceeds to explain that you must get the CT scan. She said she argued with the insurance that the CT scan will not show the suspected injury the physician wants to see. They essentially said that’s fine. But you cannot get an MRI without first getting a CT scan.

So you schedule the CT scan and wait only a week longer for this test to be done. After waiting a few days for the report to be electronically sent to your doctor’s office, you decide to call for the results since you haven’t heard from them. Of course, it takes a day or two until you hear back. When you do, you learn what the physician already expected. The CT scan did not show anything out of the ordinary. He told the nurse to reorder the original MRI scan and see if it will be approved this time.

When you call the MRI facility they inform you that it should be approved since you did the requisite CT scan the insurance demanded prior to an MRI. However, they will not actually attempt approval for it until the day before the test, as is their normal policy. The first available appointment is nearly three weeks away this time. You are beginning to get understandably frustrated that it has been many weeks and you till have no answers. You still cannot tolerate putting any weight on your foot and ankle, and the pain and swelling have increased.

Three more weeks go by, and you finally get the MRI that the doctor ordered mere days after the original injury. A few days after the MRI, you get a phone call from the nurse at your doctor’s office, and she informs you that you need to go see an orthopedist to determine if you will need surgery to repair the damage done to the soft tissues in your ankle. That’s all she tells you other than the first available appointment with the surgeon is another four weeks away since it is not an emergency.

What is the point of this story you may ask?  Well, it’s actually quite simple. The decision-making ability regarding appropriate medical care, including diagnostic imaging, has been stripped from them by a system supposedly designed to save money for the insurance companies. Your doctor knew what he suspected the final diagnosis of the injury to be, and knew precisely what imaging was needed to achieve visualization of those structures. Yet the insurance company denied the test.

To add to the frustration and senseless process, they demanded you receive a test that would not adequately visualize the suspected injury within. When those results came back they finally agreed to the MRI, which was significantly delayed due to their supposed cost-saving policies. Instead of saving themselves money, they mandated a test known not to show what needed to be examined by the ordered radiological study.

This costs not only the insurance company money, but you incur the cost for anything beyond what is covered by your insurance. And in a realistic sense, they cost the facility providing the CT scan money in unnecessary wear and tear on their CT scanning equipment, wages for the radiology technicians to provide the test, and the fees for the radiologist to read the test. All this in the name of saving money?

In the abstract sense, it is also causing you, as the patient, more money yet. Delayed diagnosis can often lengthen recovery time as injury specific treatment often can’t be prescribed until the diagnosis is ‘official’ which couldn’t be achieved until the MRI was completed. These unnecessary delays can significantly lengthen not only adequate and injury appropriate treatment but can aggravate the original injury, resulting in lengthy recovery time. Physical therapy may take significantly longer to yield positive results as the injury was immobilized for two ((??)) months while playing the insurance game.

If you had a job that required you to be on your feet and did not have the flexibility to permit you to sit down to do your job, you likely could have lost all the income during the time you fought with the insurance company.

I realize that, in theory, these practices have been put in place to assure cost-effective treatments and avoid the overuse of expensive imaging studies like the MRI. However a claims adjuster is not examining you, nor are they often qualified to determine that a test is not appropriate. They simply consult the company flowchart of approved tests for a suspected injury or even more generally just approved procedures and in what order they can be done. Instead of saving themselves money, they are in fact increasing their expenses.

It is high time at least a little bit of the diagnostic and other clinical decision-making ability be returned to the physicians that actually see, examine, and treat us.

Wheelchairs, etc. #AtoZChallenge

Wheelchairs, etc.     #AtoZChallenge

Often the use of a wheelchair is equated with someone being unable to move or use their lower limbs in order to stand and ambulate. While this is certainly true for some people and some situations, it is not a hard and fast rule. There are many legitimate reasons one may be relegated to using a wheelchair without being paralyzed. In this post, we will discuss just a few such instances.

A chronically ill person, especially one with significant chronic pain or ambulation issues may frequently need the use of a wheelchair or any number of assistive devices. A person like this must often conserve their energy in an attempt to ensure that they can accomplish the task at hand. Many such people may be able to walk a varying level of short distances. However let’s imagine for a moment you are only able to walk twenty feet before becoming extremely fatigued, but yet you must go to the grocery store for the week. You may avail yourself of a wheelchair or one of the little electric scooter type buggies while at the grocery store. For after completing your shopping, you must be able to drive home, make it into the house, and unload all those groceries. So every little bit of energy conservation you can perform while out equates to a longer duration of overall activity.

If you use crutches it may be rather obvious as to why you may be using a scooter or wheelchair. But let’s say you are without physical deformities, you may well be judged by others either to your face or behind your back. You may feel extremely self-conscious in using it. However, none of those factors should deter you from using any assistive device that improves your ability and quality of life. Remember, you must not justify your use to anyone other than yourself. Okay, maybe to your physician(s) and medical insurance provider, but to none other.

I personally have been relegated to the use of a variety of assistive devices over the years including a single point cane, a walker, a wheelchair, and even for quite a while a powered wheelchair. While I’ve been lucky enough not to need the power wheelchair in well over a decade, there was a time and place where it was not only a viable assistive device but absolutely necessary. Without it, I would have been relegated to being housebound. I would not have been able to go to the doctor without at least one person assisting and accompanying me, which was not always a possibility.

The fact remains that people are judgmental of what they do not understand. Even if they see you in a wheelchair with crutches across your lap, they may pass judgment. But when there are no obvious signs of a disability that, in their mind, would justify the use of a particular device, they are more apt to pass judgment. The same is true of disability parking placards available (typically) from your state’s department of motor vehicles.

I was legally parked in a handicap accessible spot at a local department store chain one day. I was on crutches at the time. I came out of the store to find that someone had called the local police complaining that I was parked illegally. While the police were extremely professional in verifying my legal possession of the handicap parking placard, (we are required to carry a companion wallet card to prove we are the person it was assigned to), it was a totally unnecessary thing for someone to do. Not only did it create a source of stress and embarrassment for me, but it tied up the police officers who responded from attending to a potentially more serious request for assistance. It was just a general waste of time and resources.

Upon talking to members of various police departments around my area at the time, it became apparent that this type of call was becoming more and more common. While we do not know why they are becoming more common, I can tell you that it is sad that we as a society have come to distrust our fellow citizens so much that we will make false accusations. While I do not disagree that there are likely abuses, to call the police on a vehicle with the appropriate license plate or placard legally parked in a spot reserved for handicapped accessible parking, is an abuse in itself. If there is a vehicle parked there without apparent license plate or placard designated for this purpose, then I can understand questioning the motives of the driver of the vehicle.

While this particular discussion focuses on wheelchairs, the same concepts apply to almost any medical or assistive device you could imagine even something as simple as a cast, brace, or bandage. Have you had any experiences with using assistive devices yourself or with someone you care about? Share your insights with us below.

Vertigo #AtoZChallenge

Vertigo     #AtoZChallenge

During the month of April this blog has focused on a number of general topics as they relate to chronic illness. Today we are going to touch on a specific issue, because all of the other topics I chose for the letter V just didn’t sit well with me. So in order to remain relevant and in an attempt to touch on something new each day, we will delve into the dizzying world of vertigo.

Vertigo can be an illness in its’ own right. It can also be a symptom of many other illnesses, and even a side effect of some medications or surgeries. I’ve experienced vertigo on many levels throughout my life. I’ve experienced severe disabling vertigo many years ago as a result of what I was told was Meniere’s Disease.

To this day I’m not sure what was worse, the vertigo itself or the side effects of the medication. While the medication is specifically designed to treat vertigo, the dosage had to be titrated to such a high and round the clock dosage that it made me feel similar to what I suppose a zombie feels like. I was so groggy all the time and felt like I was living in a deep and all-consuming fog. Add to that the fact that it didn’t eliminate the vertigo and it was not a very pleasant time. Eventually after lots of time and physical therapy it seemed to resolve itself. Although to be honest, even my physician could not explain how or why.

Several other times I experienced acute onset vertigo as a result of what I’m told was an inner ear disturbance. After receiving specialized therapy at a local physical rehab hospital to treat what they called crystal formation in my inner ears, it too eventually resolved. Each time I experience it I forget just how debilitating even mild vertigo can be. Driving is nearly impossible. Just getting out of the recliner to walk to the bathroom can be a nearly insurmountable task.

Most recently, after major neurosurgery to repair a spinal cord injury in may neck, I once again experienced vertigo. More moderate this time than the severe vertigo of many, many years ago. But still significant enough to further affect my balance and ability to be mobile under my own power. Every time the therapists would try to get me up out of the wheelchair to attempt walking with the walker, I would get severely dizzy. Sometimes to the point of things beginning to get dark and I would be placed safely back in the wheelchair until it passed. Other times I could counter it with relatively low doses of the medication, and techniques taught to me by my therapists. Needless to say it made recovery a bit of a challenge.

Add to the dizziness, fatigue from the medication, and I think the very worst part besides mobility being affected, was the nausea.  Unrelenting, spontaneous, and severe nausea. I can’t count the number of times my nurse had to be summoned to the physical therapy area to give me a drug to attempt to counteract the nausea. This too didn’t always work, but at least it helped.

The point is that vertigo, regardless of the cause can be anything from a minor nuisance to a debilitating problem. If it is in conjunction with another illness or injury, the effects of vertigo can be greatly enhanced and even more troublesome. While there are medications designed to alleviate the effects of vertigo, it may be so severe that you wind up having to ingest multiple medications to counter it. In the process it is a known risk that you can compound the side effects of many of these medications, further complicating treatment and your quality of life while battling vertigo.

Have you or someone you know suffered from vertigo?  What seemed to help mitigate the effects of vertigo? How did you cope with the vertigo and associated side effects of the medication(s)? Please share your story with us below.