Welcome to Redefining Myself!

My inward journey to living a mindful and quality life

while living with NP-SLE, RRMS and CIDP

and their overlapping accessories.

Slapping the face of many things demyelinating.

Thursday, August 8, 2013



Chronically Sick without Instructions

Look, I know that I’ve driven some of you crazy over the years with my failing health stories. I cannot emphasize enough how difficult and time consuming it has been for me to be trapped in a body that keeps rebelling against me (my body’s keeper). I’m sure that you have a thought or two over the years that I might be obsessed about my health problems, and maybe you even wondered if I suffer from psychiatric condition. But, have you ever considered how horrifying it has been for me to watch my own health depleting and increased physical impairments coupled with the struggles that I do not enjoy facing, all while trying to keep up with life?

I’m sorry how years ago, I chronically and annoyingly vented about me going from doctor to doctor looking for a reason to my growing list of health problems; a simple medical name that would validate the insanity of chronic sickness that I keep lugging around.


What a sense of relief you must have felt after my diagnosis. I'm positive that you harbored private thoughts of, 'I’m so glad that she finally got an answer to all of that health shit,  because I was really getting worn out listening to her constant bitching and sob stories." I’m still discovering daily, that my emotional health is just as important as my physical health.


I’m sorry for the many times I haven’t answered the telephone when you've called and for my periods of isolation. Sometimes I need to withdraw and wrestle some of my own thoughts. These periods do provide me with more clarity to move forward. Please understand that I struggle with this unwelcome new way of living with chronic illness. That not only was I battling illness but that my mind was in denial about my new way of living.Please understand that upon my diagnosis I was not given an instruction manual on how to live with a chronic illness.




I'm sorry to have burst your comfort bubble years after my diagnosis with me getting, well, more diagnosis and even more sicker. I assure you that I did not plan this. I never scheduled this in to my calendar.

I'm genuinely regretful for the many times that I've been a moody bitch in your presence and for the many episodes of me being angry and lashing out you and other’s. Do know that most of the times that I’m behaving angrily that I’m struggling inwardly with my own denial; or that I’m trying to accommodate my thinking to living as a disabled person while trying to maneuver through life with a fuct up body. I never intend to abuse you with my mouth or my moods. I feel horrible when I do. I’m really doing the best that I can to be more responsible for my thoughts and feelings and behavior and to NOT take my inner battles out on any of you. I’m trying to become more willing to admitting to and articulating my thoughts, fears and feelings in a healthy way.

That even in most of my bitchy moments that I’m not mad at you personally, but that I’m fighting my own inner battles of acceptance and that I have a bunch of fear bouncing around inside of me! Please know that I do not intentionally want to hurt your feelings but that I am overwhelmed and that I’m struggling privately with admitting things to myself let alone to you! Please be patient with me as I continue to learn how to own my feelings in healthy and productive ways.
If anything, you need to know that today I have a deeper appreciation of time and that I not only value it but that I savor it. Please understand that my time here is precious and that if I do not engage with you in certain discussions or activities, it is because I cherish my time here.

I've had to walk away from relationships with some of you because the relationships were too toxic. Some of you had even been a parent and a few decades’ long friendships. As uncomfortable, as it was to stay active in those relationships it would have caused me even more emotional and mental harm to have stayed.

I'm learning that I am not obligated to stay in toxic relationships
and that I do not even have to discuss my severing the relationship with you (because you wouldn't understand anyway! Hahaha) The most mindful thing that I can do for my quality of life is to love you from a distance.
While my illness does not define me, it has certainly changed the way I live. Please be patient with me because each day I’m still learning how to live, move and have my being in this bodily state. I value your presence in my life and your presence makes my life sweeter.

#SickChickPMA, #CNSGrrrl, #MindFulness, #QualityofLife