But you don't LOOK sick ...
“Squeezing droplets of life between the crevasses of pain, illness & disabilities. But I don’t look sick ..."
PsA & AS: The Challenges of Sero-Negative Auto Immune Diseases
With a constellation of symptoms that rivals several chronic illnesses rolled into one, and blood work that frequently refuses to fit neatly into "the box," the auto immune conditions umbrellaed under "The Spondyloarthropathies," can be tricky to diagnose and equally as challenging to live with. There are many troublesome and less than lovely symptoms which accompany both conditions, but the pain associated with these auto immune diseases may be the most difficult to deal with on an everyday basis. And, just like the majority of equally mysterious auto immune diseases, it is not uncommon to find one's body under attack by one or more additional illnesses at the same time PsA and AS is invading the body. I have certainly found this to be true for myself, and it most definitely makes functioning and living with these conditions an enormous struggle. While I have had both illnesses reeking havoc in my body for at least 5 years, I was not officially diagnosed until the Spring of 2011. I am a pretty experienced patient with several other chronic conditions, but I have a lot to learn in relation to these diseases. My hope for this blog is to share my personal challenges and experiences with others who deal with Psoriatic Arthritis and Ankylosing Spondylitis, and hopefully gain new knowledge and support along the way.
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1. The illness I live with is: Psoriatic Arthritis, Ankylosing Spondylitis, Fibromyalgia, Hashimoto's, PCOS, Spondylolisthesis in my l...
Thursday, October 27, 2011
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.
Posted by Cat
Labels: Ankylosing Spondylitis, Auto Immune Diseases, Chronic Illness, Compassion and Chronic Illness, Doctor Visits, Health Advocacy, Invisible Illness, Medical Intuition, Medical System, Psoriatic Arthritis, Sero Negative Spondyloarthroparthy, Sero-Negative Auto Immune Diseases, Sero-Negative Auto Immune Disorders
- 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 firstname.lastname@example.org. Please note that this address is also linked through my profiles. Blessings of health, energy and peace.