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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Thursday, October 20, 2011

Pre & Post Operative X-Rays (From my 1997 surgeries & body traction)

So, I've been waiting quite some time to take photos of my pre & post operative x-rays from my surgeries & full body traction circa 1997, ... and today I finally did it! Yay! I do plan on creating a more extensive post than this in the very near future, but for now, I will simply post my x-rays from way back when to start things off. I am also in the process of getting copies of my more recent x-rays. Specifically the films which show a better picture of what my spine now looks like as a result of the deterioration, degeneration, and early-onset OsteoArthritis in the L4, L3 & L2 vertebras above my fusion region. In addition, I plan on posting my most recent slip found in my neck, located at the C6 & 7, which thankfully is a grade 1/2, but is certainly still troublesome! If you have any questions or comments, please feel free to type away! 

                      Pre-Operative 1997 - Complete slip called Spondyloptosis

Post-Operative 1997. After full body traction, which increased my height by 3 inches, but L5/S1 still sits at a grade 5 Spondylolisthesis. 

Soma Body Massage & Reiki Energy Work Therapies



I have dealt with a number of chronic health conditions - including 20 years of chronic pain issues - and through my journey I have sought and experienced a number of treatments. I have been fortunate to find a few treatments that help, and of course, several others that don't.

As a general rule we have two areas of medicine to choose from when it comes to everything from diagnostics to treatment options for any given condition. Western medicine offers many wonderful and accurate ways of diagnosing conditions, along with providing some very helpful treatments, specifically surgeries and certain powerful drugs to keep us alive. But, there's also something missing from the western medicine model of healthcare. In my opinion, crucial concepts for healing the body, as well as most preventative care, are not part of the western medicine equation.

By the time I was given a diagnosis, my spine condition had become so severe that the only way I was going to survive - and hope to avoid paralysis - was through a series of complex surgeries and medical procedures. Had my condition been caught earlier on in the disease progression, some alternative healing modalities would have gone a long way towards improving my condition, ultimately lessening the required surgical intervention and even limiting, if not eliminating the permanent nerve deficit which is now a part of my life.

One cannot go back in time, but, I can share my gained experience and knowledge with anyone willing to listen. Two healing practices which have greatly improved my health, my overall functioning, and my life, are called Soma Body Massage and Reiki Energy Healing. I have witnessed many amazing positive effects from both forms of treatment within my own body and life, as well as witnessing similar results in others' lives. I would not promote either of these practices if I did not have 110% confidence in their power to assist in healing the body.

My mom found the practice known as Soma Body Work/Integration about 6 months prior to my surgeries. I began sessions in the Fall of 1996. Typically 2-3 sessions a month. While my pain never truly eased all that much - specifically due to the extreme slip in my low back - the results of the Soma sessions were pretty unbelievable. I went into surgery in the Spring of 1997, and before going under I was x-rayed to verify the exact placement of the vertebras. With the 6 months that had passed, the surgeons anticipated an increase in the slip degree, but to their shock & amazement, my spine had actually began moving upwards in the direction and position is was supposed to be. Before beginning these treatments my mother had conferred with the doctor to ensure the safety of the practice. He said that there was no harm in it, but that it was likely a waste of money, as if it relieved the pain at all, it would only be for a very brief time. 

Well, Soma is not your typical massage work and boy was he blown away by the results. As the story goes, he walked into the waiting room and shared the surprising news that there had been movement in the spine, and not in the undesired direction. He was boggled and couldn't figure out why or how this could happen; he's never witnessed it before! My mom just smiled and simply said, "Soma." 

In the provided additional links, please take a moment to view two sites which fully explain each respective therapy/treatment/practice. If you have any questions, comments, suggestions, or would like information for a referral to a Soma and/or Reiki Practitioner, please message me at Healthandillness@gmail.com

You can also find me at my Spondylolisthesis blog: 

Resource Websites for Soma & Reiki: 


Soma Institute - Soma Neuromuscular Integration

Monday, October 17, 2011

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. 

Saturday, October 15, 2011

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! 

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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