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...
Tuesday, October 18, 2011
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.
Posted by Cat
Labels: Ankylosing Spondylitis, Auto Immune Disease, Auto Immune Diseases, Chronic Illness, Chronic Pain, Compassion and Chronic Illness, Doctor Visits, Health Advocacy, Invisible Illness, Medical Intuition, Medical System, Misdiagnosis, Psoriatic Arthritis, Rheumatology, Sero Negative Spondyloarthroparthy, Sero-Negative Auto Immune Diseases, Sero-Negative Auto Immune Disorders, Spondylolisthesis
- 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.