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. 

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!!! 

The Battle To Regain LIFE

The last 4 plus years of my life have been saturated by a nasty struggle with my health, and the subsequent illnesses, which at times, consume my body, mind and life. I have "good" days, and I have "bad" days, although unfortunately the majority reside in the latter category. As a result of my ongoing challenges with chronic illness, my life has not been anything close to what I hoped for, anticipated, dreamed of, envisioned, nor planned. I know (and believe - at least most days) that my experiences have a greater purpose and are continuing to shape me and my future successes, and hopefully, my ability to help others, and even heal myself. Still, this attempt at a positive outlook does not make me immune from a deep sadness and anger associated with missing so much of my life as a young person in their twenties, and soon, early thirties. In fact, the best way I can describe feelings related to this piece of my journey thus far, is simply that I've felt frozen, and that life has been passing me by at tremendous speeds while I watch passively through a double paned window. I believe that a part of this "frozen" feeling is directly related to the fact I did not have any answers for my worsening health state for many years.

I've seen countless doctors since the age of 25 - which is another story in and of itself - but was only finally diagnosed with two auto immune diseases on April 11th of this year. It took another 4/5 months to obtain coverage for one of the medications I will need to help stop the disease progression in my body. I have yet to begin the injections, but hope to do so next week in fact. I am both excited and terrified. Excited for the obvious reasons: That I may actually begin to feel better again, .. to feel human and reclaim my life! I also feel scared and anxious. Why? Because even while I am trying to be as positive as possible, I still have a fear in the back of my mind, .. the question which looms large: What if it DOESN'T work? And then what? I am TRYING not to go there unless I need to cross that bridge, but I wouldn't be telling the truth if I said I didn't feel this way.

When my many symptoms began to present themselves back in late 2006, I was in a pretty good place in most realms of my life. I was proud of my accomplishments, felt successful in many departments, was excited about what my future held, and truly had a passion for everything in my life. At that point in time I had graduated with a BA in psychology, obtained my counselor's license, began working as an Intervention Prevention Specialist Counselor with children (yes, a long title, I know, .. but not nearly as glamorous and complicated as it sounds!), and was applying for graduate programs to get my JD. I was also financially stable, and while not wealthy by a long stretch, did have nice things and certainly didn't want or need for anything. I was also beginning to plan my future family, as aside from the matters involving my back condition and a pregnancy which would have been constricted to bed rest, having babies was not out of the question and very much expected and desired (the latter still is, but now the dream has all but faded away as a possibility, let alone an expectation). In addition to these and other positive aspects of my life, I had support and strength in several wonderfully loving and loyal (or so I thought) friends and family. It's funny how those you believe will never abandoned you - no matter the circumstance - so easily evaporate into thin air when your life no longer resembles the perfect picture you once held so dear.

When a person loses their health and goes to war with their own body, it's no stretch of the truth to state that everything else is directly affected as well. It's like a game of dominos. Sooner rather than later each piece is knocked down; financially, emotionally, spiritually, etc. For the last few years my life has literally consisted of just surviving. Rebuilding my life, my hopes, dreams and future, are all sitting on the back burner right now, as I cannot truly live, only focus on surviving, until I witness healing for my body. I am fairly confident that these continuing struggles and experiences are a foundation for something pretty awesome some day ... and some day soon I hope. As a direct result of my situation, I have spent the past few years doing A LOT of research within the medical field, and in doing so, have truly taught myself how to be an advocate (and now I'm known as "Dr. Brenna" within my family and close group of friends, lol). Using my education and work experience within the fields of psychology, counseling, and even a few healing modalities, I realized that by sharing my experiences and knowledge through writing, these past few years may not be such a sad waste after all. My hope and goal is that it may become something amazing for both myself (and ultimately my own healing on several levels), as well as a way to reach others and touch their lives .. specifically those who face similar struggles. With all that said, I have created a few blogs which focus on these exact subjects, and am presently working on designing my own website and blog which may encompass all of my writing, research, and compiled knowledge.