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.
A Crazy Few Weeks
Hello all! It’s been a crazy few weeks with lots of stuff going on behind the scenes here at Tupeak Hope. The planning stages for becoming an official non-profit have begun and networking is well under way in order to attempt to garner support and of course funding in order to make this happen sooner rather than later.
I am committed to making this dream become a reality in order to help bridge the gaps between patients and providers as well as to become a resource through which the proper services can be connected with those that need it most and may not be aware of how to find resources in their area of need.
One of Those Days…
Ever have one of those days? You know exactly what I mean. One of those days where it seems from the moment you wake up until the moment you finally lay your head back down at night where it seems as if the proverbial Mr. Murphy has touched everything you decide to do just to give you some unexpected challenges. Continue reading “One of Those Days…”
Grieving Our Former Selves Never Really Stops
When dealing with the daily challenges of chronic illness one never truly escapes the grieving process. We may, given enough time after diagnosis, learn how to cope with our new lives but glimpses of the past can seep in time and again, when we least expect it. Let me share with you just one such example of how this can happen, or at least how it happened to me recently. Continue reading “Grieving Our Former Selves Never Really Stops”
“Big Name” Food Store Pharmacy Penalizes Patients
I’ve been trying to figure out how to share this for hours since it happened. I am going to try to write this so that it makes the most sense, but beg your forgiveness if it is a bit disjointed in its presentation. I thought a great deal before deciding to write this post and decided I must share it so that others who may encounter similar situations can know that they are not alone. Continue reading ““Big Name” Food Store Pharmacy Penalizes Patients”
Time to Talk – #AtoZChallenge2018
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”
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
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.
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!
E is for Being Excited About Life! #AtoZChallenge
E is for Being Excited About Life! #AtoZChallenge
So you or someone you care about has a chronic illness. It isn’t the end of life as you know it.
Remember the excitement for life that you had before you got sick? You can have that again! Just because your health has changed, maybe even drastically, does not mean all is lost.
Today, more so than ever before, technological advances have enabled even the most limited in physical activity to remain at the very least mentally active. So if you have the desire, there are lots of things you can do to remain active and yes, even passionate about life!
Without going into specific examples based on your previous level of knowledge and expertise in any given area, there are still a variety of things you could do to occupy your mind and your time. You could use your previous knowledge to educate others. For that matter, you could use your current situation as a catalyst so that, when you are ready, you can share your experience with others. You could decide to pursue further education and new career goals.
Maybe you are not only chronically ill but also suffer from the effects of chronic pain as I do. If you find yourself unable to hold regular employment, all is still not lost. There are still plenty of ways you can continue to feel like you have something to contribute. Even something as simple as becoming a volunteer in a facility or unit that made a difference for you.
While maybe that isn’t as fulfilling in your mind as employment, I can tell you that there is something quite as fulfilling as being able to give back to those that have taken the time to help you when you needed it. Remember when you were at the worst possible point in your health and someone took the time to stop and talk with you? Remember how good it felt that someone actually cared who maybe didn’t need to, in the aspect that they weren’t being paid to do so? You can be there for someone else. Maybe you encounter a patient who could draw inspiration from the fact that you had been where they currently are, and you prevailed.
Become excited about life again!
Have you found a new purpose in your life after health issues? Share your story with us below!