What does it feel like to have an auto immune disease and chronic illness?

Having an auto immune disease feels like a gradual yet steady descent into a deep dark damp hole. Similar to that of depression, but not the same paradigm. As you begin to fall there are a few people that notice and try to reach out and grab you, but you are not able to hold on for very long, soon finger tips lose touch and the hole tightens its grasp. From this hole you have a hazy window to see life; where you get glimpses of all the things you once held so important. You watch it all pass you by, and with time gaining speed, you make attempts to climb out, but you simply exhaust your body even more. Sorrow, anger, and plain frustration, are common place ... and, after a time, you don't want to "explain" how you feel anymore. You don't have the energy, the desire, the will to get others to understand. Heck, you are in a daily struggle for your life, you cannot waste your precious fleeting energy on words; words that so frequently go unheard anyway.

There are a few days - absolutely wonderful and overwhelming days - where you actually feel like a human again. Unsure of when to expect such a day, especially as the years roll by and your "bad days" outweigh your "good," you often awake with a better sense of your old self, like meeting someone that has been packed away and brought out for a special occasion. You seem to have little or no control over this person, or that of the obviously less desirable "sick person." All you know is that when this person, and this seemingly healthy body appears, you must take advantage of all it has to offer. I must say that this is a big pitfall in the world of a person living with an auto immune disease. Especially true for someone whom is dealing with a very active period (better known, and often referred to as a "flare"), with no sign of a remission in sight. I say this because someone living with a chronic illness - an illness which involves itself in nearly every facet of one's life - is truly walking a tight rope. 

A "balancing act" is putting it mildly when looking at how to have a "normal," and semi active life, while struggling with such an illness. I cannot speak for other people living with the same or similar conditions, I can only speak for myself, but, I do believe that many would agree with me when I explain that "overdoing it" on a "good day" is a common occurrence. As a former perfectionist (former only because I could/can no longer physically deal with the pure energy perfectionism requires), a good day presents itself with so many "things" to do. So many things have been left undone, waiting for your attention, literally in every part/area of your life (from financial issues to personal relationships, and everything in-between), and when you have an opportunity to tackle the wide array of items that have been torturing you from afar, you try to get as much accomplished as possible before you drop from exhaustion. Unfortunately, because you are trying to put a few weeks of activity into a day or two, it is very easy to overdo it, which clearly creates imbalance, and is usually just too much for a less than stellar body.

Plain and simple, when your body has been hijacked by some ridiculous condition, you cannot, by any stretch of the imagination, function at the 'average person's' level. You simply cannot get even the most basic things done in an entire day that would easily be accomplished by a healthy energetic person in an hour or less. You are lucky (and happy), to be able to get out of bed, take care of your own hygiene, feed yourself (if you can stomach food or even have an appetite) and make a good attempt at contacting the "outside world." 

To some, perhaps many, individuals like this appear lazy, and are very frequently labeled as such. While putting myself in these outsiders' shoes, I can completely relate to how one might view such a person, as no one truly "gets it" until it touches their own lives in an intimate manner. And, even when something of this nature is in your life everyday (say you are living with a loved one whom is experiencing the grasp of a chronic illness), you still don't really get to a level of complete understanding and true empathy.

I get it, it's hard to understand. It's difficult to grasp, and then deal with it on an everyday basis. Having compassion on a constant basis is a strain on the other party as well. Trust me, if you are that other person in the equation, we know that you want to scream, pull your hair out, and tell us to just get better, dammit! And trust me, there is nothing more in this world that anyone with a chronic condition wants than to just BE NORMAL AND HEALTHY. It's not fun, it's not comfortable, it's not what "life" should be, nor is it what we want.

After you are asked repeatedly how you are doing, how you are feeling, ... as well as things more sarcastic, like, so ... when are you going to feel better? - even while many questions are simply out of love, respect and concern - it becomes harder and harder to answer, or even speak to at all, as the answer feels like it will never change. And I do believe that many people become fearful that perhaps it won't. At least this has become a very real fear for myself. I think too, that because such an all encompassing health related condition can feel as if it has saturated your life (and often it does), it absorbs a lot of one's being and fills the many corners of the person's existence, even when it is actively resisted. This leaves the disease in control, and it very quickly and easily begins to feel like you are the disease ... that it is the only thing that defines you. This is a tough place to be, and again, you find yourself trying to partake in a balancing act.

As for this very moment, I need to take a deep breath and take a break. I am trying to teach myself better ways to cope. Not to overdo everything when I get that special day when the old me is a resident in this very alien body. I'll let you know the results. Thank goodness that the perfectionist is simply unable to function, as she would have lost it a long time ago!

Chronic Pain Anyone?

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.

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, 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 there are others out there, and I cannot allow those whom are facing the same daunting unknown, struggle 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." ~ Blessings ~

The Multifidus Back Pain Solution: Simple Exercises That Target the Muscles That Count

Medifocus Guidebook on: Spondylolisthesis

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