Honesty! It is a cruel reality when one lives with #chronicillness of any kind. One may ask: Do I accept it? Do I hold onto the 'once was' or the 'hope for a better tomorrow' as the mind is still running full force yet the physical body is telling quite another story altogether? Realistic expectations is something that is pertinent yet contrived and quite the dichotomy as each patient enters the world of disability, chronic illness or an incurable disease / #raredisease of any kind. It is especially cruel if your illness happens to be that of an #invisible nature and you find yourself in a never ending battle of explanation and exhaustion just from the qualms, peering eyes, demeaning stares and every prying "Nosey Nellies" of the world.
Let's admit it and address the ever present white elephant in the room which is the burden of living with chronic illness with our fellow man, loved ones and those friends and any alleged support system that does not believe nor try to understand our plight and agony of the diagnosis we carry. Some patients may live with the thought that their loved ones act as caretakers and pirouette through our illness while accompanying us to doctor appointments, procedures which require a driver post op or even leave us under the impression that they desire to be there only to one day wake up, metaphorically speaking, to a conversation or a brief temper tantrum where it all comes to a head and we find out that we have actually been a burden of sorts and this time spent has been a 'going out' of people's way to accommodate our illness as if we have somehow placed this upon ourselves and are impeding some curse upon everyone else in our lives with a selfish imprisonment or lack of consideration. Yes, I willfully stood on line at Nordstrom's and with all of the excitement in my heart, as if checking off an item on my bucket list spent years of my savings and purchased the most expensive chronic illness that I could find. I then went to every accompanying department for it's accessories in the form of other ailments and am parading them around as if I have on the best LouBou's on the shelf and I proudly display my new Louis Vuitton of illnesses while I purposely deplete your life with my disability! This is not only shocking to the entire emotional palette yet it burns me to the core along with our entire community who suffers in pain each and every day physically, emotionally, mentally and financially. The patient is then weighed down by the fact that the medical community not only lacks the facilities, specialists and treatment plans that we so desperately need but also faces a barrage of harassing behavior when entering emergency departments, social security offices and even routine doctor appointments. A healthy and daily self talk and the comrade amongst our support groups is typically the "medicine" that keeps me centered and assists my every day life. Without it, I guarantee that there is no way that I would make it as a professional patient. I have some family support yet I am quite convinced that most of the chronically ill community will echo most of this writing. We need better than status quo and at this moment the sub par that is being sent our way is below acceptable on every level.
Today. I am pained. This evening my heart breaks and tears flow down my cheeks at the marred hearts for our people. The posts, comments, messages and cries for help on a daily basis only continue to grow. The life of the #ChronicallyFabulous as others refer to us as and I lovingly continue to post is not as breathtakingly beautiful as it seems; however, after our moment of heartache, near annihilation and some coaching with deep release it is easier to replace the anguish with a tenacity that keeps the purpose and flame burning that much brighter. I call it being righteously indignant. There is much to fight for here. I pledge to you that I will continue being me and spreading all of the love, hope and cheer with positivity as often as I can. I know what my life's purpose is and I will be the best me (not YOU) that I can be. In turn, I know that you will be the best YOU that you can be and together we will accomplish phenomenal feats within and outside of our community. Look around brothers and sisters; we already are! The support we show each other on a daily basis alone is astounding.
I had the extreme pleasure today to speak to another warrior who had a story of courage, strength, hope, endurance, compassion and is a true giver. She moved me as I am most often moved by those I have the pleasure of speaking with. I have a long road ahead of me even now, medically speaking, yet it is the glimpses of the journey through the eyes of other #Warriors that help to keep the fire alive. We each have a place in this life and a purpose to fulfill. I am always in awe of being able to hear one to one the stories of those who are stronger than I. I may be tired today and potentially even challenged a bit with circumstances yet my mind is strong, encouraged and ever so humbled and set on those things higher than I.
I have a dream that includes many and takes many in order that we may be significant. The success will come to us all. I would rather leave a positive and healthy wake with significance in the lives of those around me than be successful any day. Actually, if I am significant than I am successful! Stay encouraged. Not every one will understand your journey and that is okay because they aren't meant to. We will touch the lives of those to whom we are meant to. Shake the dust off of your feet; wipe the tears away from your eyes and remember that tomorrow is another day to be #BeYOUtiful just the way that you are. You are #enough.
You are treasured, You are valued and You are LOVED!
The Glitter Queen
#FreeLife #OneLove #YouareEnough #BeTruetoYou
#RealisticExpectations #unite4GP #5millionGPstrong
#GLitterQueensGlobal #ChronicPain #ChronicIllness
#TakeaBite4GP #cureGP #InvisibleIllness #RightCareAction