Chronic Pain Anyone?

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.

The Need for/and Lack of Compassion & Understanding with Chronic Illness

The Need and Lack of Compassion & Understanding with Chronic Illness ...

Anyone like to share about their struggles with getting family and friends to understand what they deal with in regard to chronic illness? I will start by sharing a piece of my story and subsequent feelings and experiences around this subject. 

While I've had a few family members and friends who have been supportive, understanding and empathetic - in relation to my chronic illnesses since day one - I've experienced more negativity, and a general lack of understanding, from the majority of people in my life. I know that this issue is not an uncommon one when it comes to those who battle any chronic illness, and I am very interested to hear how others have dealt with this matter. 

Some people offered genuine understanding, support and empathy, right from the onset of my symptoms, while others ... well, let's just say that I'm still waiting! And, to be very honest, I do understand that unless you've dealt with a similar issue yourself, it's really hard to relate to what another may feel in this respect. I've even had a few experiences where a person has come back to me after they too found themselves in a similar health related battle, and apologize for how they treated me. Admitting to the fact that they judged me based on stereotypes that many have when it comes to their ill counterparts. While I certainly don't wish any illness or medical problems upon anyone, it is nice to have some validation for what you've been dealing with, especially after being so harshly judged and/or criticized. 

It never ceases to amaze me how people take things personally; believing that because I don't feel well, and therefore, I am not physically able to go out and do this or that, that it's an excuse and that it's about THEM ... Not about the simple fact that when you don't feel good, you don't want to go out. Sometimes you can barely muster the energy to get dressed! I know that's hard to wrap your head around when you're a generally healthy individual ... Heck, only a few years ago, I really couldn't grasp how a shower & getting dressed could be exhausting and leave one completely unable to continue on without a rest! In a world and a life full of healthy, young and energetic people, that concept couldn't be more foreign, right?!? 

As a general rule, It's a hard to say "no" to people, especially when you're a polite "people pleaser" ... It's hard to have the same miserable answer for every question that entails how you're doing and feeling ... It's hard not to feel guilty ... It's hard to feel like you're screaming at the top of your lungs and not being heard ... It's hard to disappoint people on a regular basis ... And, it's hard to accept the fact that your body no longer does what you want it to, nor feels like you'd expect it to feel at thirty years of age! Learning to say "no," and not feel guilty about it, has been a really tough life lesson for me. But, as the years march on, I am becoming a pro at it .. or perhaps a really confident and experienced minor leaguer, lol. One thing that makes me so frustrated with all of this, is the insinuation that in some way, shape or form, one actually enjoys being and feeling sick the majority of the time!

Before I became ill with my auto immune diseases, I was only dealing with my spine condition, Spondylolisthesis, and it's various related issues. I had my surgeries when I was 15 years old, and afterwards, for about 8 years or so, I functioned pretty normally. I had little pain in comparison to before my surgeries, a considerable larger degree of energy compared to the present day, and of course, no additional crazy symptoms (ones that can stop you dead in your tracks, like chronic nausea, extreme fatigue and fevers). Even in this glorious state of physical being I once enjoyed, I still had to pace myself; being careful not to over do things so I didn't throw my back out, or become overly tired from the resulting pain. But, all in all, I was pretty darn healthy, and certainly very active considering the severity of my spine condition. I worked two part time jobs during high school and half way through college, and went to school full time. I also had enough energy, and general sense of well being, to conduct the rest of my life without blinking an eye or thinking twice. My apartment was always emaculate, even with three crazy kitty cats and a very messy boyfriend. I had an active social life, and spent a lot of time with my family as well. I even had the time and ability to throw in a few of my favorite hobbies, along with my intense workout schedule, which topped off at 3 hours a day, 5 to 6 days a week. 

Yes, I felt pretty darn good during that time, and I couldn't conceive of how one might struggle to do the most basic things like bathing or folding laundry. But, even during this period of time, I found that I couldn't do it all, or at least as much as many others did. Many people worked full time and went to school full time; something I was unable to do myself. I was fortunate enough to have a supportive family who helped to pay for my college degree. Something that I know is not always a real possibility and option for others, and I am beyond thankful for that gift of a good education. During the last two years at UW, I decided to stop working (as I wasn't making much money anyways and I was able to do better in school if I was in less pain, therefore, more rest and less stress was required). While I was grateful for all I had - especially my ability to walk following my surgeries - I still struggled to some degree, and couldn't simply compete with others in many regards. I remember talking to this one girl after class and sharing pieces of my life. I revealed that I was not working, along with a comment about how I was doing in the given course we were taking together. Her reply was full of sarcasm and attitude, and really took me by surprise. She said, "Well, if I was as lucky as you are and didn't have to work because Mommy and Daddy paid for my school, then I'd be doing as well as you do too." This comment bothered me in a number of ways, but most specifically, it irritated me because if I could, I would have traded my less than stellar body for her healthy body in a heartbeat! I told her as such and she seemed to understand, at least I'd like to think she did. Still, that comment, and ones like it, have long tortured me. I would prefer to be healthy, pain free, energetic, etc., and therefore, able to work and go to school full time, verses not! For someone to say that they'd rather be in my shoes and experience chronic pain, depilating symptoms, fatigue, etc., than have a healthy body and be able to do all they want and need, simply makes me more angry and nauseous than I already am! Plus, it feels really invalidating in many respects as well. I can't imagine saying something like that to someone else, friend or stranger alike. 

In the past few years, as my illnesses have progressed, those latter activities, like bathing and doing laundry, have become very big tasks, and forget going out and being social! Even if I feel decent (not flaring and experiencing massive inflammation in my face and joints, nor look like an accident victim as a result of my skin presentations), by the time I am done getting ready, I am exhausted! It sounds so very ridiculous to many of those who can't even fathom what it's like to live in a body that is battling multiple chronic illnesses and disabilities, but for myself and many others, it's a very sobering and painful reality. Somedays I break into tears; overwhelmed with these ongoing battles, in a war with my body ... a war in which I ponder the possibility of being victorious. My significant other will look at me and ask what's the matter. The question almost feels comical now. I can't even begin to put all of my pain, sadness, frustration, and even anger, into words. Plus, I am so beyond tired of answering that question ... trying to explain why I feel the way I do, and why I rarely get a break of feeling good. To put it simply; it is all beyond frustrating. At times, I want to scream: "I don't enjoy being sick and I don't want to be sick! I want to be normal, healthy, energetic, and I'm sorry I'm such a disappointment to everybody!" I guess sometimes it's good to scream and let it all out. The little girl inside of me wants to show everybody that I could be as talented and successful as everyone always anticipated I would be one day. She angrily wants everyone to know that she's just as disappointed in herself and the situation, and beats herself up enough for everybody ... and therefore, doesn't need the guilt, the judgement, the criticism, and lack of understanding. 

Yes, contrary to this post, I really do try to be positive ... I swear I do! I guess I just needed to vent ... and let others know that they are not alone in feeling these emotions revolving around chronic health problems. I hear it a lot: Friends, family, and even medical professionals, lacking a general understanding and placing a lot of judgement onto those with a chronic illness. It seems so unfair to me, as most of those I've met who struggle with some kind of illness, well, they already feel terrible, and they want so badly to be like everybody else; to be active, energetic, feel good, focus their energy on life and not survival. I've also found that a large number of those with illness are or were overachievers and perfectionists, and that not being able to do it all, and do it all to perfection, is maddening and heartbreaking, among a few other adjectives! 

I don't wish any chronic illness or disability upon anybody. It's not fun and it's not a way of getting out of doing this or that and being "lazy!" One thing that certainly makes living with any chronic illness a bit easier is having understanding, validation and less judgement, from those in one's life. I've mentioned the document called "The Spoon Theory" in the past, but considering the subject matter of this post, I wanted to make mention of it again for anyone who can relate to what I've just discussed. The concept of The Spoon Theory highlights, in simple and relatable terms, what it's like to have a chronic illness. It's both great for validation if you struggle with a chronic illness yourself, as well as better describing what it feels like to have a chronic illness to others who generally don't and can't understand. If you've never read the piece before, I would encourage you to take a peek now! 

Thrown Off Course By Chronic Illness ... A New Path To Something Beautiful

Thrown Off Course By Chronic Illness ... A New Path To Something Beautiful

Everything I have experienced in my life has contributed to the goals and dreams I once held for my future, specifically in relation to my career(s).  Just as I have grown, changed, and shaped as a person, so have my hopes for the future, with my plans and expectations molding and altering with every step I took in search of that ultimate destination we seek call "success." 

I, like many other little girls, held many big and lofty dreams, and true expectations for my future career and life. And, like most little girls who are asked what they want to be when they grow up, my answers frequently skirted along the lines of becoming a veterinarian or doctor, and one cannot fail to mention the fantasy careers like that of a professional ice skater, a beauty queen, or an actress. I even dreamed of becoming a cat resuer and cat "rancher." Whatever that means and entails, I am not quite sure, but it sure sounded good, and honestly, it still does. 

We dream big as little kids. Our entire life lays before us with a plethora of opportunities and a seemingly limitless list possibilities. The world is at our fingertips, and by all regards, it is ours for the taking. We aren't yet damaged, nor so severely affected by many unforeseen, and often unavoidable, life traumas at that point in time (at least the majority of us still fit nicely into this category. Unfortunately it's not always the case for every child and trauma and tragedy strikes at a far too early age). And, if we are raised in a loving and supportive family, by caring and encouraging parents, we are by most accounts, children with countless dreams which have taken strong root for a brilliant future reality. 

I was fortunate to grow up in such a household. I was encouraged to do whatever I wanted; to shoot for my dreams, whatever they may be. I was told that I was smart. I was given confidence, a well-rounded education, and the love needed to grow into an intelligent and capable adult. All systems were a-go, but there was one thing neither myself nor my parents expected to affect nearly every aspect of my life, my body, and my future: My ongoing battles with health conditions. Of course, even with a health condition, we still have dreams, and we are still capable of obtaining those dreams, just in a different way, and typically, by way of a severely detoured route, so to speak. Although, I don't think anyone can truly prepare for trauma to the body, mind, spirit, or life in general, especially in the younger years of life. And while such extreme events and circumstances are capable of robbing many things from your future dreams, they also enrich our lives and our future's in ways which we would have never anticipated nor intended. 

As I moved past my surgeries, and into my late teens, I began to think seriously about my future and what I wanted it to look like. I am not trying to brag or sound trite when I say that I knew I had many talents, skills, smarts, capabilities, and the opportunity to be whatever I wanted (aside from a professional athlete or something in that realm). I think all in all, I simply had a healthy dose of self confidence, and that's definitely not a bad thing in my book. 

My families' careers centered around both areas of law and psychology. I am a Libra, and therefore, also have a natural attraction and inclination for both subjects, although I must share that I was initially dead set on avoiding both feilds of work. After all, these areas are what defined my parents' individual selfs within a career model, and just like every other kid, I was desperately seeking to become my own person. 

For a few years I tended to resist both, even as the smallest glimmer of possibility. I then made the decision to pursue several aspects within the health world; more specifically, natural medicines and various holistic type therapies and practices. I wanted to offer a combo platter of sorts, which would encompass the many facets of the health and wellness concept as a whole. While I pursued my AA & BA degrees in Psychology for a foundation, I began dipping my toes into the worlds of personal training, nutrition, massage therapy and reiki energy work. I then began to look at becoming a ND or Acupuncturist. As I moved through my last two years as an undergrad, I found that I could no longer resist my natural talent and general interest for Law and Psychology, and felt that my future was meant to entail something from each area. Combining the two subjects seemed ideal. I then made the decision to move towards becoming a PsyD within the world of Forensic Psychology. My ultimate goal was to attend grad school in a dual program for my JD and PsyD. 

Yes, I had set the bar high and felt a strong need to prove myself to the world, .. and perhaps maybe even to myself. Something of a lofty and impressive (not to mention a very time & energy consuming and finanically taxing) direction to take. Just like many other students experience, I had some serious doubts about myself and my decisions. Worries over money, in addition to an ever-increasing anxiety centered around my general capabilities and intelligence levels, began to overwhelm my thoughts. A large nagging question remained in the back of my mind: What if I did it, and then decided I didn't want to be a Psychologist and/or an Attorney? Then what? I am first a failure - both to myself and my family - in addition to a laughing stock, with the subsequent ever-dreaded sense of guilt layered on top. So, with lingering confusion upon my graduation, I did what I thought to be the most "responsible" plan of action and direction. Instead of jumping directly into a graduate program, I obtained my counseling license, which was quickly followed by a job at a treatment center working as a counselor with children (my official title was quite hilarious, making me sound much more important than my true position entailed ... I was labeled an "Intervention Prevention Specialist Counselor," a mouthful, I know). I hoped that this experience would provide me a better sense of myself, what I should and could do, and in some bizarre way, assist in "fail proofing" me and my future. 

My main goal and hope was for the clouds to part, the sun to shine down with brillant clarity, and with one swift movement, I would be enlightened as to what path to travel at this large, and oh so important, fork in the road of life. Did I want to be in the world of law and/or psychology? Did I have the stomach for it? Was I too compassionate? Did my body have enough to give to keep me going through both an intensive graduate program, then onto a high stress, high intensity job position? All answers I was unsure of, and kept me from moving forward from both my law applications and my psych grad program applications for the time being. Of course, life is never that uncomplicated, and there were other factors at play, but I think you get the picture.  In a nutshell, I was frustrated, confused, fearful, and somewhat lost. I wanted to be so many things ... I wanted to use all of my talents, enjoy my multiple loves and passions, ..  And I most definitely did not want to make the "wrong" decision, and think "what if?" Of course, as we age we learn the big life lesson that we will always make the wrong decisions at times, and that ultimately it only helps to shape us in ways we never anticipated. But, the younger we are, the more challenging this concept is, and it's one which is truly  hard to "get." 

I have always been a person with a strong sense of intuition. But, when it came to this matter, for some reason I was so stuck that I couldn't even decipher how to follow my intuition and heart, as I simply didn't know what it was telling me at that point in time. I was recently reminded of a quote by Steve Jobs which truly encompasses this struggle. During a commencement speech he said the following: ""Don't let the noise of others opinions drown out your own inner voice ... have the courage to follow your heart & intuition, they somehow already know what you truly want to become." I thought this was a profound statement, one that most certainly embodies much of what I was feeling, and often still hovers in the back of my mind. I was incredibly overly concerned with everybody else;  specifically what they thought, what they were worried about and what they wanted me to do. I am a self professed "people pleaser" after all, and while I have actively and consciously worked on that flaw for the past 10 or so years, it's always been something of an issue, and sometimes a true road block for my forward movement in life. 

Now, just like with anyone's life, there's always layers of issues occurring at any given point in time, and I am no exception to that rule. More specifically, I am saying that it was not only my internal battle which affected that point in my life, as much much more was going on, although what exactly, and to what degree, were two things I was not clear on, even within my own head. That first year out of college is when I truly began to experience the downfall of my health status. I still kick myself for not going to grad school right out of the gate, getting it done while I felt well enough to do so .. and heck, maybe I could have distracted myself from my symptoms. But, in reality - in that never failing, crystal clear thing we refer to as hindsight - I know that I would not have made it, strictly on a physical basis. And the fear there was simple. Put simply, I would be stuck with massive student loans, unable to complete my degree, unable to get a job in that field, and unable to pay that money back. Virtually drowning in a lack of money and a chronically sick and pained body. Something that doesn't sound like a great circumstance by any stretch of the imagination. 

It took over 4 years (probably more like 5. or even 6, when taking into consideration how long those diseases have likely run amuck in my body) to get answers; a diagnosis, or rather diagnoses, for my auto immune diseases. I first began to notice a few symptoms in my mid-twenties, and with time passing, they only increased in both number and degree. The official diagnoses were given at the age of 29, almost 6 months to the day before my 30 birthday. I have spent the second half of my twenties sick, seeking help, and lost in the world of basic survival. It's interesting to recognize that the same sort of battle scenario occurred for my spine condition as a little girl. And in both instances, my world was forever changed; leaving me with a "new" body, a very different life, .. even something of an altered character, personality, spirit, and mind. By all accounts, I was transformed and shaped into something a bit different than before; a person redesigned by the trauma endured. 

We all have dreams, plans, hopes, and even expectations for the future. And while these things never play out exactly as we dreamt of, still, we generally see something of the life we wanted unfold perfectly imperfect as time passes. Each stage of our life appears to be dedicated to various goals, learning lessons, and life stages, and when these plans are completely thrown off course, we are left to pick up the pieces, find new perspective, clarity, and start again with something new ... with something which better suits us, and compliments our state of mind and body, .. and then we grab for new hopes and dreams and redesign our journeys. 

Eventually our life journeys, and the subsequent experienced traumas, begin to affect us in profound ways and we must step out of the box  we once built for our future and take the first step on a new path. Sometimes we are thrown curve-balls and roadblocks appear at the least likely locations.  We must make a choice to either climb over, go around, or completely destroy what lies so stubbornly in our path. And sometimes, when none of the above are possible, we even find ourselves slamming on the breaks of that proverbial car and throwing the "vehicle" into reverse, in search of a brand new road, and onto uncharted waters possessing tremendous potential awaits us ... Why do flip a 180 and run because of human nature and the most primal emotions? Perhaps out of fear. and other times, this drastic about face may be accredited simply to exhaustion, or even a sudden lack of interest. I've wanted to be a great many things in my 30 years on earth. I've felt both confident, completely defeated and worthless. It's hard to separate what the correct and perfect path is, and while it all too often seems our inner self knows exactly what to do, we press mute on that little voice and allow fear or the opinions and influence of others to determine our actions. Again, maybe this too is simply part of the learning process, but it certainly makes for some complicated life decisions, regrets, and if we allow, resentment. 

Sometimes I feel like a complete and udder failure, an embarrassment, not to mention incredibly ashamed and guilty. I want so much for myself and my future. I want to share myself, my skills, my knowledge, and I want to make a difference and actually derive joy and satifsfation from my careers and life. Yes, I do have several "titles" now, but none are complete, and I feel so far from the person I hoped to be in the aspect of careers and overall future successes. I would still love to have several seriously amazing degrees, specifically doctorates in psych and law, and even a MD. I'd also love to have a degree in journalism and a masters in therapy/counseling. I want so desperately for these years I've spent sick and trying to just get through the day, to mean something. 

I want to prove to everyone - but most importantly to myself - that I am still the girl everyone thought was going places, to be amazingly accomplished and successful. I want so much, yet I sit in frustration and anger, .. resentment and guilt ... worry, ... and so much more negativity.  I try to beat down these less than desirable feelings from my life; to irradicate them from my very being and existence, as I know they do not serve me. But, on the other side of the proverbial coin, I still feel so very lost, and I often wish I could jump out of this body, this ridiculous illness, and replace it with a healthy model and pursue my dreams with all the gusto I feel in my heart and soul. 

Another day, Another doctor ...

A few years back a nurse from my primary care's office said something that struck a cord with me, .. something that a patient may have very easily taken as an insult, but for myself it actually brought clarity and perspective to my life, more specifically the life I have been living these past 5 years or so, .. although, one could argue the concept fits me and my life going as far back as my preteens. What did she say to me you ask? She said that I was a "career patient," a term which I had never heard or considered before, but something which rang so true. It also followed along the same lines as another comment made by my mother a number of times over these last few very challenging and painful years. Let me back track and say that this time spent seeking help, answers, a diagnosis, and finally, treatment, has been very hard on me, both physically and emotionally. One could also easily say that it's been a battle financially and spiritually too, as it seems one only affects the other, just as our body's systems and conditions affect each other, like the game of dominos. 

For the majority of these years I have felt many emotions, spent many frustrating days enveloped in a nagging desperation that the so-called best years of my life, the time in our twenties which is supposed to be racked with happiness, new experiences, success, ultimately the building blocks (or years) of our lives, has been all but wasted being ill .. waiting to get answers, waiting to feel better, waiting for treatment and improvement, all so I can get back to living my life as normally as possible. Many weights were lifted from my shoulders, my heart, and my very being, the day I received my first auto immune diagnoses. Aside from the obvious, one additional weight lifted was the idea and belief that so many of my good years had been taken away from me, wasted, robbed, down the drain with no chance of recovery, and certainly no opportunity to press the rewind button. My mom's statement to me has been repeated over these last few years, but I was not able to accept it and truly appreciate it, .. really be okay with what has been occurring (and what hasn't) as a result of my chronic illnesses, until I allowed myself to see the whole picture, diagnoses in hand. My mom said that this experience, just like with life, has been a true education, one on a doctorate level, and that I had all but earned myself a Ph.D as a result of my ongoing struggles. This idea gave me relief, a sense of peace that I haven't felt in some time, a calm which allowed me to let go of the idea that this time spent being sick, unable to do so many of the things I longed and hoped for, dreamt of, and expected for my life, wasn't for nothing, and that it was a very large, expensive and multi-faceted education which will serve me well in the present and the future. I even hope that as things come full circle, that it may help in the healing of my past, which remains a painful and tender subject with too many layers to count. So, here I am; a career patient. A career patient with an extraordinary graduate degree in life with so much more to learn, but so many more lessons to share. And, one thing I know which brings me much comfort, I am not alone, even while I am unique, rarely fit in "the box," and always seem to fall upon the more unusual, more rare circumstances, conditions, diagnoses, and so on, within every department imaginable it seems. 

I am not sure why all of this trauma has happened to me, to my body, to my life .. and yes, while I don't want to throw a pity party and allow it to be my entire life and all of me, I do find it unfair, sad, and lonely. I have always tried to be an honest person, a real person, one with some integrity and compassion, sometimes too much so, and to a fault, and so, I prefer not to sugar coat things, to avoid apologizing for my life and my feelings. I am only human and I am not sure how else I can reach others if I am not just me. I am overly sensitive to things, overly sensitive to others, their feelings and heartbreak, and to how they react to me, so I can't say I don't care what others think and say, as that would be a lie, but, I am working on it ... working on letting go of other's judgments, opinions, beliefs and even criticisms about me and what I've experienced and endured in the life. Holding on to such things doesn't serve me in any positive manner and only generates negativity. This, I know, is yet another lesson for my doctorate degrees in life, and has been tested over and over by my journey with these chronic health conditions. As I have shared before, I believe we are our own best advocates, sometimes the only advocate for ourselves, and so trusting yourself, knowing your body and following your intuition, your gut, is so important, sick or not. 

Finally! Answers to My Chronic Illness ...

It took over 4 years to get an answer, a diagnosis, or rather, diagnoses, for my auto immune conditions. After seeing one doctor after another, finally, on April 11, 2011, I found the doctor who would bring many of my puzzle pieces together, forever change my life, provide much needed answers, and finally, validation of my health battles and a direction for hope. I am told I have two sero-negative auto immune diseases: Psoriatic Arthritis and Ankylosing Spondylitis. Both help to explain a number of my symptoms and many years of suffering, although there remains a few question marks; symptoms which do not fit into the category for either disease. So, with that, my Rheumatologist has hinted and suggested that there's likely a third, although those answers are on hold for now. Getting these diagnoses was like a victory for myself, for my life, my body, and even for my past. 

As a little girl I played many sports. Everything from volleyball, softball, tennis, gymnastics, dance, ice skating, and my most beloved, soccer. I was very active and loved being competitive. I felt great pride and accomplishment through both my own self and by way of other's reactions to my achievements in this arena. I also desperately wanted to please everyone, adults in particular. I was raised within a society which told young people not to question authority, not to doubt the opinions, beliefs and statements of your parents, teachers, and of course, the doctors. Some kids seek attention by doing negative things, I wanted the opposite; attention and praise for the positive things, and I sought it out as often as possible. So, of course as a young child and teenager the last thing I wanted was to disappoint someone, especially the adults. I wanted to make them proud and happy, not ashamed and angry. Being an overly sensitive person only increased my reactions to things, and I clung to every word, hand gesture, even facial expression, worrying constantly that I have done something wrong to make another mad, disappointed or upset in some way. 

When the pain started in my low back I was only 9 years old. I had yet to go through puberty and didn't have a full understanding and ability to recognize my body, but one thing I did know for certain: I was in pain and a lot of it. At first it came intermittedly, brought on or aggravated by more aggressive activities and sports, but I didn't pay it much attention and left it at that. As the pain and overall discomfort grew worse I was unsure if this was simply how everyone else felt in their body, and while I did say I was in pain, I only did so rarely and quietly, as not to upset or worry anyone. As time passed the pain became to much to bare when it came to playing sports, the last to go was volleyball. I remember the last day I played the game in fact .. I was good at it and the team looked to me to be a good player, and that day's pain was beyond horrific. I had to leave half way through and didn't live up to my typical abilities. My parents, especially my father, didn't understand why I needed to stop, and frankly, I wasn't sure why either, I just knew I was in great distress. Just like the rest, I gave up the game of Volleyball, with many thinking I was being lazy, or at least that's what I perceieved, especially since my doctor's had repeatedly said I was fine after each visit I came and complained of pain. Turns out those doctor's knew exactly why I was in pain, but didn't do anything about it ... although one later wrote in her notes that she was surprised I was still able to walk due to my extreme condition of Spondylolisthesis ... yet not one word of confirmation of my pain and complaint. I still wonder if that doctor simply hated me, as why would anyone with half of a heart allow a child to continue forward without any help knowing the severe and probable consquences of my condition? I can't answer that question. I don't think I will ever know, but it's always remained in the back of my mind, and in the pit of my stomach. She later went back and revised my records to make herself not appear at fault ... simply to save her own ass. The other doctor's made my x-rays, three years worth, vanish into thin air .. leaving no record, no footprint of me and the progression of my life altering condition. Both doctors got away unscalthed, able to continue practicing medicine. Sickening. 

As a child I didn't have a voice. I had my intution, which told me something was very wrong, but I didn't have the right words, the strength, the power to continue speaking up and fighting for my body. You do not question doctors ... at least that's the general belief and unspoken rule. And as a child, you are dually gagged, as they are both an authority figure and experts, how dare one question them when you're simply a child? You don't. Instead of continuing to voice my struggles, pain and tremendous growing discomfort, I wanted to please everybody, not create any problems, ... so I stopped; ultimately, I shut up. As a result I literally witnessed the edge of a cliff, coming close to falling off. And, while I didn't fall off, .. while I'm alive and still walking, my life was forever changed in so many permanent and not so wonderful ways. As an adult I was not going to allow this same scenerio happen again. I was not going to give up or shut up, and I vowed to continue listening to my body and stating the problems, even while people were annoyed and questioned my sanity. Yes, a lonely and long road to travel indeed, but I did it, and as a result, I won a big victory for that little girl inside of me who had no voice. Perhaps my past experience was a set up and a needed lesson in order to navigate this more recent struggle ... I am not sure. Although, I must say, that had it not been for that little girl, the pain, the suffering, the battle I nearly lost, I am not so sure I would have been so persistent this time around. 

What Does It Feel Like to Have an Auto Immune Disease?

Having an auto immune disease feels like a gradual yet steady descent into a deep dark damp hole. It's 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!

Invisible Illness Week: 30 Things About Me

1. The illness I live with is: 

Psoriatic Arthritis, Ankylosing Spondylitis, Fibromyalgia, Hashimoto's, PCOS, Spondylolisthesis in my low back and neck, Degeneration and OsteoArthritis above my spine fusion & neuropathy/permanent nerve damage in feet. 

2. I was diagnosed with it in the year: 

I was diagnosed with my spine condition, Spondylolisthesis, in 1996. I was just diagnosed with the auto immune diseases, PsA & AS on April 11th 2011. I was previously diagnosed with the others in 2002 & 2007.  

3. But I had symptoms since:

I began experiencing severe pain and nerve related issues involving my back going as far back as 1991. I started to see symptoms of the auto immune diseases appear in 2006/2007. Same for the PCOS. 

4. The biggest adjustment I’ve had to make is:

With both of the major health conditions (Spondylolisthesis & PsA/AS, and all things that came with them) the biggest adjustments I had to make was learning how to live a bit slower, not feel guilty about how I felt and being unable to do everything I wanted and others expected of me (teaching myself boundaries & how to say no), and finding balance within life with these conditions & the "new" body in which I now reside. 

5. Most people assume: 

Most people assume that I am healthy and simply lazy. 

6. The hardest part about mornings are: 

 Getting out of bed & "getting going" takes me a long time. 

7. My favorite medical TV show is: 

Mystery Diagnosis. It helped me learn how to advocate for myself and continue seeking the answers to my symptoms. It also gave me inspiration, encouragement, and a feeling of no longer being alone in my battle with my body & the medical system. 

8. A gadget I couldn’t live without is: 

My MacBook. I'm typing on it now! :) It's given me an outlet for my experiences and pain, connected me with people I likely would never had met, along with giving me back a feeling of productivity, success, and purpose. 

9. The hardest part about nights are: 

Knowing I have to start it all over again the next morning after it took so long the day before to get it together. Aside from that, I love the night. It's when I feel the best and am most productive. 

10. Each day I take _ pills & vitamins:

8 different pills & at least 5 different vitamins ... I should be taking more! 

11. Regarding alternative treatments I: 

I find a lot of help within the arena of alternative medicine and I could not function without it! My favorites are Soma Body Work & Reiki Energy Work. 

12. If I had to choose between an invisible illness or visible I would choose: 

I chose neither. I would LOVE to be healthy, feel good everyday and have the energy I used to! 

13. Regarding working and career: 

I have a lot of anger, frustration, sadness, anxiety and fear around this subject. I wanted to do so much - and still do - but I am not at all where I wanted to be, nor anticipated I would be, as a direct result of my health issues. 

I wish I had my graduate degree, but I am happy I at least accomplished my Bachelors at this point. I still hope to go back to school so that I may get my PsyD or JD ... or preferably, both! 

I have many loves, a lot of experience in several fields (mainly personal life experience - including western & eastern medicine), and I believe a number of talents. My education has been in the direction of psychology and counseling, although I did dabble a tiny bit in law/political science as well, which included an internship as a Criminal Investigator. I have a counselor's license and worked briefly at a Chemical Dependency Center with children and teens, but became ill not too far after graduating from college and beginning this work. 

In addition, I have a natural inclination towards the arts, design and writing ... really anything creative.  In 2009 I got online and started blogging. I had began to consider the idea of writing a book about my life only a few years earlier, and blogging really helped to shape a new direction and purpose for my life as it is now. I have been able to utilize my formal education, my ongoing research around everything health and illness, my personal experiences with chronic illness, my natural abilities and inclinations as a counselor and overall sensitive/intuitive spirit, and my need and general talent for beauty & art. 

While I do not professionally work today, I am making strides towards something much larger in regards to sharing my crazy painful journey with the masses ... or anyone willing to listen! :) 

14. People would be surprised to know: 

I played many sports as a child and loved them! I wish I could still play but my body doesn't allow for it ... especially my "flipper foot." 

15. The hardest thing to accept about my new reality has been: 

There have been a number of things, but two are at the top of my list. The first is knowing that I may never get to have a biological baby of my own. This one is extremely painful, and again, I am working on dealing with it today. The second is accepting that my career and my life as a young person was not, and is not, at all what I wanted, hoped for, and expected. 

16. Something I never thought I could do with my illness that I did was: 

Find some greater purpose for all the pain & struggle I've endured and turning my chronic health problems into something amazing ... Not quite there, but I've made huge strides and will continue to do so to the best of my ability. 

17. The commercials about my illness: 

I think there's one with a golf player for Psoriatic Arthritis? And of course there are a number of Fibromyalgia related ones. Aside from that, I can't think of any. And I would sh*t in my pants if I saw one about my spine condition!

18. Something I really miss doing since I was diagnosed is: 

Being able to work, go to school, take care of myself, and clean my home/run errands, etc., all in the same day. 

19. It was really hard to have to give up: 

My perfectionism. I need cleanliness and organization in most areas of my life, but as a result of my illnesses and their subsequent symptoms, I do not have the energy and capability to do many of the things like I used to. It was really hard to let go and no longer allow it to bother me. 

20. A new hobby I have taken up since my diagnosis is: 

Blogging, Facebook & website/blog design ... all of which were directly influenced by my illness. 

21. If I could have one day of feeling normal again I would: 

Do an amazing workout; clean my house, car, even my purse, from top to bottom; go shopping; snowboard & go on a long motorcycle ride with my significant other; run as fast as I can; do cartwheels; play a soccer game; spend quality time doing activities with my family out in the big bad world; then go dancing at a club/bar with friends until the wee hours of the morning. 

22. My illness has taught me: 

My illness has taught me that life is not fair but there can be a wonderful set of life lessons and some beautiful purpose if you're willing and open to it. 

23. Want to know a secret? One thing people say that gets under my skin is: 

I have two .. sorry. "So, when do you think you're going to finally feel better?" ... When people ask "How do you feel?" .. then, when you answer, they follow it up by asking "Well, why do you feel that way?" ... as if they have not been listening for the past 5 years or more! - doctors included. It's mind blowing. 

24. But I love it when people: 

Read my writing and give me encouragement, inspiration, motivation and praise ... makes me feel like I'm worth something and that I'm not a complete failure. 

25. My favorite motto, scripture, quote that gets me through tough times is:

"Foot Prints in the Sand" - I read this poem every single day for four plus month after my surgeries while recovering in my body cast and flat on my back. It still gives me hope and makes me cry to this day. 

'One night I dreamed I was walking along the beach with the Lord.

Many scenes from my life flashed across the sky.

In each scene I noticed footprints in the sand.

Sometimes there were two sets of footprints,

other times there were one set of footprints.

This bothered me because I noticed

that during the low periods of my life,

when I was suffering from

anguish, sorrow or defeat,

I could see only one set of footprints.

So I said to the Lord,

"You promised me Lord,

that if I followed you,

you would walk with me always.

But I have noticed that during

the most trying periods of my life

there have only be one

set of footprints in the sand.

Why, when I needed you most,

you have not been there for me?"

The Lord replied,

"The times when you have

seen only one set of footprints,

is when I carried you."'

by Mary Stevenson

26. When someone is diagnosed I’d like to tell them: 

To continue advocating for themselves and never doubt their intuitions. Try to find balance and not overdo things. Focus on taking care of yourself and do your very best to let go of any guilt around doing so. Learn to say no and be okay with it. Seek out others who can truly relate and have compassion & empathy, as it's so important that you feel someone understands and respects you and your new circumstance. Find something you love doing that does not deplete too much of your energy, but can distract you. Try to find humor in things ... life becomes too serious and overwhelming, and it's easy to drowned when you're chronically ill. Support & compassion are key in my opinion. 

27. Something that has surprised me about living with an illness is: 

How little doctor's actually know. 

28. The nicest thing someone did for me when I wasn’t feeling well was: 

I can think of several examples, but some of the more simple things which have been done for me when I'm feeling really icky include: my mom sending me "kitty cards" in the mail to make me smile; my fiancee warming up the down comforter in the dryer then wrapping me up & arranging the pillows so I'm cocooned; my mom running to the grocery store, pharmacy and health store for my "supplies"; my fiancee giving me feet, neck & back rubs when everything aches so terribly; my sister sending me loving text messages to tell me she loves me, is thinking of me and hoping I feel better; my dad making sure that I have money to pay for my Soma Body Work massages ... I can think of many more, but I will stop there. I am truly blessed with awesome people in my family/life & I couldn't survive without them, their support, help and ongoing understanding & love! 

29. I’m involved with Invisible Illness Week because: 

Because chronic illness - especially invisible chronic illness - is hard to understand unless you experience it yourself, it's so important for those who do battle some kind of chronic health problem to connect with one another and provide their mutual support. I just wish I knew it was "Invisible Illness Week" a week ago! LOL ... Better late than never I suppose! And hey, I'm used to being late these days anyways! I wouldn't be me if I weren't late! People would be shocked and confused, and I can't let them down! LOL. 

30. The fact that you read this list makes me feel: 

A little less invisible. Thank you!!!