Welcome! ... What is it like to live with a chronic illness?

Dealing with any chronic health condition, and/or illness, can be a daunting task in-and-of itself. While there are numerous aspects that affect one's everyday functioning and survival, one of the greatest frustrations is the lack of understanding, compassion, and tremendous judgement experienced by an individual struggling with any chronic health problem. While it may be difficult to relate to someone who battles a chronic illness, it is so important for those on the outside looking in to make their best attempt to understand their loved one's challenges.

Several years ago my mother stumbled upon a wonderfully written document called "The Spoon Theory." This piece details what it is like to live with a chronic health condition in simple and relatable terms. In my opinion, it is a must-read for anyone whom is seeking to better understand what it is like to live in a body which is chronically ill.

Trust me ... this piece is enlightening and extremely insightful.

This blog is a commentary on my own very personal, and sometimes very painful and challenging journey, with chronic health conditions (including the auto immune diseases Psoriatic Arthritis & Ankylosing Spondylitis, Fibromyalgia, Hashimoto's Disease, Hyper-Mobility Syndrome, PCOS, as well as a spine condition called Spondylolisthesis), and the medical system. While I am not a doctor nor a medical professional of any kind, I am most definitely one very experienced patient! My hope is to share my gained knowledge and experiences with others who deal with similar issues.

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Spondylolisthesis & Chronic Pain

The Spine Condition Spondylolisthesis ...

Spondylolisthesis is a spinal condition in which one of the vertebra (usually the lower Lumbar region & Sacrum) slips forward from the vertebra below. Spondylo means spine, and the word listhesis, literally means to slip. While this condition is actually fairly common in general the population, it is rare for the condition to slip to a degree which is great enough to create problems. Physicians and the medical community label the varying degrees of slippage, from least to most severe, as grades 1 through 5. A complete slip, beyond that of a "grade 5," where the vertebra no longer sits on the respective vertebra below, is called Spondyloptosis. This condition can occur at any vertebra level, but is more commonly seen in the lumbar region of the spine. This is the area in which I experienced my Spondyloptosis. I am now considered a grade 5 Spondylolisthesis following a series of surgeries, procedures, a full body cast and extended therapies. My spine is fused from the S1 (Sacrum) through the L5 & L4 (Lumbar).

There are a number of debated "fixes" (surgeries/procedures) for Spondylolisthesis, but due to the infrequency of the condition becoming severe enough to require surgery, they are more experimental than common practice, at least from my understanding and in my opinion. I am not a doctor, nor am I an expert on this condition, that is, if you consider an "expert" as someone who has specialty credentials in the medical field. Rather, I am simply an individual whom has dealt with this condition first hand for my entire adult life, not to mention the majority of my juvenile years as well. My hope for this page on Spondylolisthesis is to utilize the power of the internet in order to reach as many individuals, in all age groups, who may be dealing with this condition in their life. Whether the condition is labeled at a grade 1, or a case more severe, I hope that my personal experience, insight, and research with regard to the spinal abnormality, may help as many individuals as possible. This condition tends to be less well known than other conditions and diseases, and due to this fact I found it difficult to connect with any fellow sufferer's during my painful, tough, and life altering struggle with this extremely painful condition since my initial diagnosis, I hope to create new dialog and connections within the orthopedic community.

As I mentioned previously, there are several treatments for this condition, which are ultimately determined by the grade level found in any given patient. I believe that it is highly important for anyone whom faces decisions regarding this type of serious medical intervention be able to obtain as much information as possible prior to moving forward with any treatment plan. My recommendation is to thoroughly researching the condition itself, the various surgical and non-surgical options, statistical outcomes, possible side affects, and even the prospective physicians whom specialize in this very unique condition, as all of these components are essential when it comes to advocating for yourself as a patient with Spondylolisthesis. Not only are there several more commonly practiced surgical and medical procedures offered as treatment, but there are also a few alternative options that may work well from both an intervention standpoint in addition to that of preventative measures. The better bet is seeking a combination of treatments, which may result in a more rounded and promising future for a patient. Treatment is often determined by the severity, but even in the most severe cases, there are a few options that may not be presented or addressed by a provider, therefore limiting options, and resulting in a rush for the operating table. Now don't get me wrong, I am not opposed to surgical intervention, as my condition was very severe, and without immediate intervention, my overall quality of life would have been bleak, even fatal. I would also like to note, that like many surgeries, whether it be on your spine or your heart, surgical intervention may assist in increasing the overall quality of life, but it rarely, if ever, makes one "normal" again, nor "fixes" the health issues completely. This is a myth. There will always be a sort of "life long up-keep," which is required to assist in allowing your body to function in the best way possible, in a less than normal state. Again, this is my opinion, which is based simply upon my personal experiences, observations, and research.

I hope that anyone who may be just learning of this condition (parents who are educating themselves with regards to their child's recently diagnosed condition, any adult that has just been diagnosed, and is seeking information, resources, options and help, along with those veteran Spondylolisthesis sufferers), may take time to research the condition to the best of their ability, ask many questions, thoroughly investigate all options that may be available (both western medicine and alternative health care), and feel free to contact me with any questions, advice, stories, or anything else that may be prevalent to the goal of assisting each other in making the pain, along with our general quality of life, a little better.

This condition is a life long presence and battle. It can be very scary, painful, and all around difficult. I will share my timeline from my earliest pain and symptoms, to my surgeries, and ultimately, my current struggles. I pray that this page may help both those facing a Spondylolisthesis diagnosis, along with anyone whom finds themselves seeking support for a family member or friend. Even if I only manage to reach just one person struggling to stay afloat in this overwhelming process, I will be grateful that my painful experience was able to make another's less frightening and isolating. I know that while we are more rare and fewer in numbers, that ultimately there are others out there enduring similar circumstances, and given that knowledge, I cannot allow those whom are facing the same daunting struggle walk blindly through the darkness when I have already walked the journey. 
As a last note, if you are dealing with ANY chronic health condition, please take a moment to read both the poem "Footprints In The Sand" & "The Spoon Theory." 

Chronic Pain Associated with Spine Conditions and Other Chronic Health Problems ... 

Chronic pain. The phrase, or rather, state of being, makes many of us cringe with great discomfort and resistance from the get go ... but unfortunately, so many of us deal with it every single day of our lives. It makes daily functioning - everyday activities - extremely challenging, and affects many, if not all areas of our lives. Those who battle chronic pain know just how much it can affect energy levels, attitudes, mental and emotional states, along with our general interactions and behaviors in our world. It is always on our minds, sometimes so much so that we cannot sleep, participate in activities, even eat. Chronic pain literally drains us; depleting our energy levels so much so that it is a struggle to get out of bed some days. And, once we open our eyes and make that first movement to get out of bed, we are faced with the challenge of "getting going," so to speak. We quickly and easily become exhausted from dealing with the pain which emanates throughout our bodies, and for some (myself included), the pain is so great that it feels as though one's body has been hit by a mack truck during those hours of sleep. Depending upon the cause and source of the pain - which may be experienced in a variety of ways - one thing seems to remain consistent: It is a daily struggle which is always present, creeping into every aspect of our lives.   

Pain is our body's way of telling us that something is not right within one of our many body systems. It is meant to alert us to a problem, and in turn, we are suppose to either "fix it," or stop the action/behavior which is causing the pain. But, when we are faced with a permanent health problem/condition/illness that results in continuous pain (and therefore, the problem is not fully corrected), we have to seek out different ways of "solving" our pain problem. So many of the "solutions" for chronic pain, provided by the medical community, are more or less "band-aide" fixes. Of course, there is the popular "medication fix," which does not truly address the problem, although for those that have too much pain to deal with life, it is often a necessary evil. On the positive side, medication may assist in decreasing pain levels, resulting in the body conserving and directing more energy towards healing the core problem(s). Surgeries, and other medical procedures, are common place for western medicine providers as a means to solving pain related conditions. But, I must say, that in my experience many of these "solutions" only lead to more problems, rather than fixing the underlying issues. And, I fear that there are a few too many doctors out there whom are a bit too excited to jump to the surgery route, but, that is just my humble opinion, not a fact. Of course there are situations that require surgical interventions in order to save a person's life, and I understand this as well, as I faced a similar dilemma. In my personal situation, while my operations and procedures promised not only to save my life (which they did), and reduce the pain (to a good degree for several years), the outcome was far from what was suggested or anticipated, and to be frank, my pain remains a life long struggle. When an individual does require surgery, more often than not there remains a mix of ongoing and unpredictable problems as both a direct and indirect result. It's typical, at least in my experience, that many doctors and healthcare providers often bill a given procedure or surgery as a complete fix; a fix that promises a solution to the given condition, end of story. All of us dealing with chronic pain - whether it arose from a spine condition, injury, illness, or any other countless health condition - know the truth. And the truth being: That there is no true "fix." No matter how grand, no matter how praised the procedure, or skilled a physician, there is no simple, quick or perfect answer to the pain problem. So many people want to believe in that fairy tale. And it is understandable, as we hate to see our loved one's in pain and suffering firsthand is not a joy either, especially if it is a long term and daily experience. It seems unending, and honestly, much of the time, it is. 

Medical science has come a long way in a short period of time. That much is true. But, for all of you fellow chronic pain sufferers - those whom battle chronic ailments and diseases like cancer, auto immune diseases, spinal conditions, transplants, severe infections, and so much more - know that no matter how spectacular the presented solution appears, there is no band-aide which truly sticks. This is why I have believe it is so important for those who suffer with chronic pain to share our stories and provide each other support, empathy and compassion. While there are many causes for our pain, we all deal with similar struggles, face the same challenges, battle the same attitudes, navigative the same painfully broken medical system, and fight for a sense of normalcy with everyday that passes. I hope that anyone and everyone who deals with chronic pain may feel that they can share their stories, their tears, their anger, and their accumulated knowledge & experience on this page. I hope that we can provide each other some support, resources, and the "do's and don't's," all in the name of decreasing the pain.  Chronic pain sufferers are the only ones who can truly empathize and hear other chronic pain sufferers. The same sort of rule is witnessed with both chronic illness and other serious long term health conditions. It is a struggle to get others in your life to really "get it." I find that while they try to understand, try to sympathize and be compassionate, it is nearly impossible for them to understand the full magnitude of chronic pain when they are not in it everyday, every minute, like we are.  I know that many of us try to remain quiet about our pain, not to bother our significant others or family and friends. And that as a general rule, we try to avoid sounding like we are "complaining." And we are not complainers. We are usually survivors ... courageous survivors at that, and all of whom endure far more than anyone should ever have to deal with in a lifetime. It becomes beyond frustrating to get others to truly understand that we do not enjoy being in pain, nor do we enjoy having the same answer to the question, "how are you feeling?" This struggle often interferes with, and strains relationships and friendships. It can make us doubt ourselves, our bodies, our minds, and can result in an internal, and seemingly hopeless battle of anger, frustration, and sadness. I believe that this issue is similar to the struggle so many of us face with doctors, and convincing them how we feel in our own bodies. We know ourselves better than anyone else. Yes, even better than the "god like," "know it all" doctors, whom often try to tell us we are crazy or depressed when they can't find an answer to our pain and constellation of symptoms. It is an easy train to jump on, not to mention a frequently travelled train ... It allows the doctor to appear competent when they doubt themselves (which they rarely admit to), and with their authority and status, we begin to doubt ourselves, believing that our pain is not real, or that we are crazy, selfish, and/or attention seekers. It happens so often that we begin to ignore our best advocate; our intuition. When we are ill, dealing with so much pain, facing daily fatigue, and literally struggling to get through the day, we have little energy left to battle doctors, question their authority and push for help. I have experienced this first hand more than once, and it nearly resulted in my death, and ultimately changed my life forever. I would like to note that I do not dislike all doctors, and do promote visiting a provider(s) whenever your health requires. But, I want to emphasize how important it is to listen to your own voice, trust your gut, and not buy into the idea that the doctors know all and should not be questioned. From both my own personal experience, and from observing and listening to other's, I have seen a pattern that seems to occur far too often, one which I find frightening.  

I will post blogs to this page that describe various personal experiences in the "field of pain"... situations, stories, experiences, and interactions, that others that would likely not fully or truly understand, unless they too have been in the throws of chronic pain. I will also add my findings when it comes to what has worked for my pain, and what hasn't cut it. Two treatments/practices already mentioned in the blog include Soma Body Massage Work and Reiki Energy Work. You may read more about the practices themselves, as well as how they have helped relieve my pain. There are additional website links provided which are related to sites which further detail the practices and where you may find providers in your area. If you have any questions about said practices, please don't hesitate to contact me! Also, please add your own suggestions, as we can never have too many ideas and suggestions for the relief of pain!!! My desire for this blog subject is simple: I hope that it may allow a dialogue to open between all of those whom experience chronic pain, so that we can share, support one another, listen and truly hear each others pain and struggles (because sometimes that's all we need, no judgement, no comments, or even suggestions, just someone that really knows how you feel and can therefore provide validation in your experiences). There are obviously a lot of different ailments, and with all these various conditions comes a variety of surgical procedures/options ... Some are more successful than others, some are "newer" and/or "experimental," and many can only be found at certain medical hospitals, universities, communities. If you have information regarding any procedure, providers, hospitals, etc., please provide any details that you may deem important and ultimately helpful to someone dealing with the same or similar situations. From my experience, given the level of patient privacy rules these days, it is often hard to get all the information you need, the nitty gritty of the details, what to expect, how a doctor performs (even personality), and all can help a fellow chronic pain patient find a good fit for their health care choices ... hopefully, making their future a bit better through knowledge that may allow them to avoid certain things, and ask certain questions.

About Me

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My interest for all things related to health & illness arises from my own struggles with chronic health conditions. I have found it most therapeutic & empowering to write about my many experiences within this realm. Through education, my own research, and my ongoing personal challenges, I am teaching myself how to become my own best advocate. To learn more about me, please see the page entitled "About Cat" located at the top of the page. If you have any questions or comments, you are welcome to contact me through the "about" section listed above, or email me at healthandillness@gmail.com. Please note that this address is also linked through my profiles. Blessings of health, energy and peace.

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