So today I come home from my second overnight sleep study in three weeks with more questions than answers. To say I am frustrated, confused, and even a bit defeated would all be accurate. This may seem confusing when you read why below, but I promise to make sense of it. It’s important to keep in mind that medicine is rarely simple and especially for those of us with multiple or complex medical conditions it gets increasingly complicated.
Professionalism goes a very long way in patient relationships. Even if you don’t feel compassion, sympathy or empathy for your patients the fact that healthcare is a business and good business requires good customer service, I strongly suggest you learn how to at least fake it and fake it well. Openly doodling and blatantly leaving it for your patient to find does not instill a sense of professionalism a provider should hope for.
Time is a finite thing when it comes to our lives regardless of whether we are healthy or ill. None of us know how long we will have on this planet before our time is up. This is a fact. Also a fact is that while many of us do not wish to talk about it we really need to be having the difficult discussions with our family about what we )and they) may desire should either become unable to make or communicate decisions regarding their medical care on their own. Continue reading “Time to Talk – #AtoZChallenge2018”
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
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 – 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
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.
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.
Terminal Illness #AtoZChallenge
Typically when we think of chronic illness we don’t think of terminal illnesses. However many illnesses that end in a terminal condition can, in fact, be a result of a chronic illness. By definition, a chronic illness can be one that lasts more than three to six months. There are many terminal illnesses that would also be considered a chronic illness.
Several members of my extended family have battled cancer over a number of years. Some are still fighting the battle, keeping it at some sort of bay. Others are not so lucky. I have other family members who have battled kidney disease, one of who even had a transplant. Many times in my life I have encountered those who were so ill that it was deemed by them and their physicians that hospice care was the most logical path.
Sometimes the decision is made to forego further treatment in order to improve the quality of the limited time they have left. While this can be a controversial topic, I believe everyone has the right to determine their own best course of healthcare. Sometimes the treatments we may endure may not definitively prolong our lives and may leave us extremely sick or weak as a result. Maintaining a good and open rapport with your physicians is imperative in understanding where in this treatment process you may find yourself.
A relatively new change healthcare that could potentially cause concern, is the involvement of palliative care physicians early in your treatment. Palliative care has typically been thought of as an end-of-life option. However, the palliative care physician has evolved in many areas. Well before my brother reached a point in his cancer care that things were deemed to be terminal for him the palliative care team was involved in his care.
The first time we met with them in the ICU they explained to us that their role is expanding. In today’s healthcare system they are taking a more proactive role, with the express hope of decreasing suffering while increasing quality of life. This treatment can take many forms depending on your particular medical scenario. They also continue to make themselves available in the more traditional role of hospice and end-of-life care.
For those who are facing the decision as to whether to continue battling a seemingly never-ending battle with a disease process, this is a very difficult and personal choice. To some, it may sound like giving up. A better way to look at it is that the person is coming to terms with their situation, and choosing to embrace the time they have left and doing their best to ensure it is quality time with those they love.
Sense of Self #AtoZChallenge
What is a sense of self? Typically it refers to how we perceive ourselves or in more simple terms it refers to self-image. How does our sense of self influence our lives? How does our sense of self transform when we are suddenly faced with a life-altering diagnosis?
When we are healthy and are able to do things we wish to do, including an occupation where we feel good about going to work each day, our sense of self is easy to identify. We can feel good about our chosen profession. We can feel good about our circle of friends we have built. We can feel good about our family and how close we feel to them.
When we find ourselves presented with a life changing illness or injury, we can face a whole new set of challenges in addition to the present medical situation. Suddenly we may find ourselves facing the very real losses associated with such a sudden change in our health and abilities. We may be unable to work either temporarily or worse yet permanently. We may face fluctuations or even losses of friends and family who are either unable or unwilling to accept our newfound limitations.
When we were able-bodied we often identified with our chosen profession. Without that label, we may struggle to determine who we are without it. Frequently when meeting someone new, one of the routine questions we may face is “What do you do?”. This reference to our occupation can be very difficult for someone who is seeking to identify who they are after finding themselves unable to work.
The key to finding yourself and your newly discovered sense of self is not always a simple one. The most important thing, in my opinion, is to cut yourself some slack! Give yourself some time to adjust physically to your new situation. Give yourself some time to mourn your old sense of who you were. Your injury or illness is not a sign of weakness!
As you begin to adjust to your situation, give yourself some credit on what you are able to do. It is important to recognize those things you are still able to so, or that you have accomplished despite your illness. We are often harder on ourselves than those around us may be. It is time to change this and improve how you feel about yourself. As you adapt to your new life, it pays to focus on the positive things, rather than to dwell on what may be outside of your reach.
As things progress, find things that you enjoy. Find things that make you feel good about yourself. Set goals that are both realistic and attainable that you and your care team can assist you in achieving. This could begin with something as simple as going outside. Enjoy the fresh air! Maybe you previously were a workaholic who spent most of your time inside in an office. Take the time to enjoy the outdoors. Even if you start simply by sitting on your front porch for a few minutes a day.
As time goes on, continue to find the things that bring you joy. It doesn’t matter how small and seemingly insignificant these things may be. No goal is insignificant if it brings you joy or helps you to feel better about yourself. Continue trying to keep things as positive as possible. Each little thing you do can improve how you perceive yourself. Share your experiences with others. Write in a journal so that you can look back and see the progress that you’ve made. This often helps one to keep things in perspective. This is especially true when we feel we may not be making any progress at all.
A true sense of self is often elusive, even to those who may not be facing challenges. It takes effort and time to find a true glimpse into who we feel we are after a major illness or injury. It is imperative that you give yourself the time to adjust and figure out who you feel you are or who you wish to become within the limits of your situation. There is no easy answer or guaranteed steps to accomplish this as it is a variable process based primarily upon your particular situation. There is also no regular time frame in which you must determine the answer to who you feel you are after diagnosis.
Do you have a story about how you adjusted to your new self? Have you found something that helped you improve your own sense of who you are? Please share with us in the comments below. We would love to hear from you!