"I believe in you" are some of the most important words a chronically ill patient could ever receive. When battling an invisible illness there are many stereotypes that are faced and overcome on a daily basis. Chronically / invisibly ill patients battle the weight of their very diagnosis, the accusing stare of an emergency physician who may question that diagnosis, the sheer pain when trying to move only to realize today is another bed day and the tasks in place now have to either be canceled or rescheduled. Possibly the struggle is in the mind with their own thoughts whether they were born with their illness or it was thrust upon them due to any number of circumstances. As we all know, the psyche can be quite the warzone and statistically speaking there are many patients who suffer from physical illnesses that also wind up with accompanying mental health diagnoses due to extreme stress placed upon the patient.*
My name is Stacy Sawyer and I have been battling the monster called Gastroparesis (GP) since 1995. I had issues for awhile but this was the year of my official diagnosis. This disease took away who I was before GP. I was a very successful long-distance runner working my way through paralegal school with dreams of Law School. I was a divorced mother of two. I was always health conscience and I lived life vigorously. I had many dreams and goals in life.
Let's stop already! Can you even hear me anymore? Does my opinion or pain matter? Is the sound of your own narcissistic voice still drowning out my cries for help? Do you feel comfortable with yourself? Your self embellished, hierarchal view of how life in general shall be and who should serve you during every waking moment while those who suffer on a daily basis are but a mere spec of dust on the spectrum of mediocrity in your world. The pony show you put on for the business colleagues, friends and family who think that we have the picture perfect relationship yet I know what life is truly about. How did we get here? Oh wait, I digress so let's go back to the beginning of the never-ending, metaphorically torturous "Mulberry Bush" to shine a light on the faux pas and rarely discussed topic of Domestic Violence which thankfully holds an entire Month of much needed awareness in October.
A quick statistic for you:
Women are much more likely to be victims of intimate partner violence with 85 percent of domestic abuse victims being women and 15 percent men.
Domestic Violence comes in various forms and isn't strictly physical. Abuse can also include mental, emotional and also financial which is a term coined "the purple purse". That may be an outdated phrase yet a real form of abuse.
I am passionate about this writing because my life has been deeply touched by some area of domestic violence at one point over it’s course or another and it seers me when I see it take place, hear of it or sense it. When one knows the pattern of an abuser or can "feel" a victim; having been a victim then my empathy kicks into high gear and also that fight instinct. I will never overstep my boundaries as it is not mine to do yet I wish nothing more than for each and every person I meet in this world to encounter one: a deep self awareness and knowledge of who they are and to love who they are and then second: I wish freedom for them in every area of their lives. That is my life's purpose. Love and Freedom. I am extremely realistic in the fact that many are unable to change their circumstances immediately for whatever reason and have no choice but to live with the abuser (please don't judge this statement for unless you are in a DV situation you have no idea what this is like and how to actually get out). I would like to assist in offering ways to rebuild your self-esteem while in the place from "here to there" so you can learn to love YOU again. I do this through blogging my personal stories and those of other warriors. We share our struggles, strengths, trials and also triumphs. We hold close to each other, faith, if faith is not for you then coaching techniques and other resources are offered. As I always say, you are treasured, you are valued, you are LOVED! If you take away nothing other that phrase today then I feel somewhat accomplished here.
Chronic Illness is a beast! It rears its ugly head whenever it chooses to. The kind, compassionate souls who once looked upon us with eyes aglow can easily seem to fade away and one day it all explodes as if the pin from the grenade has just fallen out. There is never, ever an excuse for domestic violence of any kind. I want you to please hear me and hear me well. I have experienced this even in high school being picked up and literally dropped on the floor by a double black belt who claimed to be "the Dragon" - sweet Mercy! The 'I'm sorry' jewelry, weekly flowers on one particular day of abuse followed like clockwork. Wow! We are going to bring flowers on the day of an abuse as if to habitually apologize or is to memorialize your abuse date? Thank God for Freedom!
Regardless, never is there an excuse or makeup gift GREAT ENOUGH to apologetically erase the abuse! It isn't going to happen. Typically, I try to ebb and flow eloquently through my writings yet this topic is extremely raw, gritty and needs to be addressed without flowery words because quite frankly there isn't anything eloquent or flowery about this topic! No amount of Vera Wang nor Guerlain or Old Spice could ever make this easier to wear and no one would choose to. I can tell you that from experience.
Chronically ill patients seem to battle Domestic Violence on a greater scale as I notice being within these communities for quite some time now. Why is this? Why is it necessary to constantly place an undue pain upon the people who are already in unnecessary pain? This is cruel and unusual punishment. Now, I know and understand that the abuser is sick mentally and emotionally. I understand that they need a check up from the neck up (and the some) and should obtain some serious anger management and psychiatric counseling services to start amongst other things. This does not make it right; this makes it somewhat palatable.
My hope and my desire is this: IF you are or know someone who is #chronicallyFabulous (or perhaps you are well) and you either are in a situation of Domestic Violence or ever happen to find yourself in this situation always remember these things:
* It is NOT your fault and you did not do anything to incite this
* You can get out if you choose to face fear and seek services in your area
* Once you leave - the hardest part is not the leaving...it is the “not going back”
* If you cannot leave for whatever reason then possibly find a way to go to personal counseling or find a friend who can listen to you and help encourage you through this journey. We are out there and you are never alone
* You are treasured, You are valued, YOU are LOVED
* You are worth more than you know and have a purpose inside of you. You can do whatever you put your mind to. Remember that. Hang in there.
Here is National Hotline in case you need immediate assistance
National Domestic Violence Hotline
#DomesticViolence #Awareness #BeHeard #SilentNoMore #Encouragement #PreparetobeFree #FreeLife #October #BeYOUtiful #FacetheFear #StandStrong #GPNation #ChronicIllness #InvisibleIllness #NotINVISIBLE #BreaktheSilence #YouareLoved
Are we STILL #invisible!? Too loud or not loud enough?
Too many perish, too many lost, an abundance won't fight due to the #lack of #EmergencyDepartment treatment and never even darken their door despite patient suffering! Multiple Diagnoses as if #Gastroparesis alone isn't enough of a #fight yet still we carry on and are armor bearers to the Warriors around us! This is what we do. To us we are not invisible as this is #life, this is #truth; a #passion and a #cause to which ...we pledge to our fellow man. I am your right arm or your left in your time of need. To quote my precious friend Deb: "I see You" #iseeYou"
Hear us! To the #GpNation and the #youDONTlooksick club and the #realhousewives of #Gp, the #brothers, #fathers, #sisters, #mothers & #children I applaud you all! This is our standing Ovation for overcoming "chronic" period. I know none of us need one and that is what makes us extremely humble and empathetic individuals. Our hearts. Without notice, we face grief in our community and run to the side of those who need uplifting and encouragement. We put on our #smile with or without #makeup because we are #ChronicallyFabulous and #TogetherweFIGHTTogetherweWIN gets the call heard! #TeamworkMakesTHEDreamWork
We are #OneVoice1Cure United for a cause to #cureGp....we are ONE #GPNATION. We are #Invisibleillness and we ARE STUNNING, MAGNIFICENT, BEAUTIFUL, BRAVE, REALISTIC & HOPEFUL, OPTIMISTIC, PERSISTENT, TENACIOUS, WISE, HARMONIOUS, NON-JUDGMENTAL, EVER LOVING #Warriors 💚 wear your #chronic #LOUD today and everyday because you're beautiful just the way you are!
Much love and respect,
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
Here is Deb's Journey. Deb is a Patient Advocate who works tirelessly for the #GP community to spread #awareness for the cause with hopes to #cureGP. She also #advocates through FaceBook, Twitter, many other social media platforms and her own blog at www.iamokaynow.com
Gastroparesis the beginning. I believe my journey began in 1989 with the first migraine, but I didn't realize it. The first migraine I had was a reaction to Indocin. I thought, at the time! And it may very well have been! What you also need to know? Is that I was an avid exerciser, biker, jogger, and really worked at being healthy. Always had sinus and constipation issues but did my best to get around those without slowing down and you would not see me near a doctors office~~ until it interfered with my life! Which one winter it did with pleurisy... My Dr just shook his head, when I said, " I can't run... Because it hurts to breathe,!" And he says, " well yeah!" One thing which might help to understand my personal tenacity? Is to know, I was hit straight in the driver's side door in 1990. I was leaving an observation of elementary school to then drive two hours for exams towards the end of a semester, to finish a degree in early childhood education! My car was totaled, my tooth knocked out, lower front jar broken, muscles pulled from back of my neck, and all I could think of was "this is not! Happening right now! I am finishing this degree!" I would get my mouth wired, go home, return to the hospital with concussion symptoms and AGGRAVATED! But would return to my classes in a neck brace. Okay, so fast forward to many years later and I begin to have non- stop stomach viruses. They were also linked to a period of time with massive migraines, sinus polyps, walking pneumonia, two sinus surgeries, allergies, and then the hunt began. 1996 I had a hysterectomy and appendectomy because of repetitive ovarian cysts bursting and forming with endometriosis. Along with the ongoing -unrelenting GI issues. Things would calm for a period of time. Then I would go into fight to keep my job to only lose it again with nausea, vomiting, diarrhea, abdominal pain recurring again with bouts of constipation. The dehydration and migraines with a merry- go- round of symptoms hiding themselves from the normal tests made diagnosis difficult back in 1996 - 1998. I would be fired from my teaching job... Get another job .. Then be fired from it while in a hospital bed. Then while in the gastroenterologist Merry-go-round ... a precious Doctor told me ... "I am referring you to a motility specialist." I immediately asked him, " do you think I am crazy? What kind of doctor is that?" Because to be honest, this was getting a little crazy and at this point, I had never heard of a motility specialist! 1999 He reassured me and this phase of my journey would lead me to Dr Thomas Abell ... Thank God! Who removed the question marks and got everything stabilized enough to do testing and begin the diagnostic phase. The answers weren't easy.. But the point of this whole story is ... I would not have found out, I had gastroparesis, a paralyzed colon ( pseudo-obstruction) , received help for these migraines ( abdominal based) and went on to peel back the layers of sjogrens and mitochondrial malabsorption disorder.... Neuropathy. ( i probably left something out ... I live in a semi- state of denial) The first set of doctors were the "best" but clueless! The second tried, but referred me, and that led me to the "third time is blessed! " The third attempt I was blessed enough to meet a Doctor who had trained under Dr Thomas Abell! 2000 He would go on to send me to South Carolina and Dr Lahr and have a colectomy - which changed life measurably. Did not change the facts, but made it less miserable! So, from a diagnosis in 1999 to today trying to stay alive~~~ the theme is persevere one moment at a time. Doing what is necessary is not easy, nor do we always have the strength to do so, but it is better to go forward .. No matter how tedious or difficult! So, on this synopsis of a journey which did not accept the gastric electrical stimulator, I have gone through a PICC line placement from 1999 - 2005, port-a-cath placements from 2005 - present. ( on fifth port) I celebrate today, but pray for a better tomorrow and research with diagnosis codes which allows for treatment without hearing " we know you need this, but because others have messed up - we have limits which have been put on us" Then you ration your meds.., and the insurance company decides not to pay for an item which meets the criteria for which they are basing their denial! We are survivors of this journey- have perseverance ~~ even in those moments when we feel our well is empty! 1/11/2015 Proclamation to Establish August as Gastroparesis Awareness Month | Petition2Congress http://www.petition2congress.com/17439/proclamation-to-establish-august-as-gastroparesis-awareness-month/
Welcome to "The Glitter Queen's Blog / A Blog for All Warriors"! Let today be the start of something new. A day of invocation, of declaration and proclamation. This blog will always be dedicated to those who battle chronic and incurable illnesses like myself, for the #ChronicallyFabulous and the #YouDontLookSick Club. This will be a place of affirmation, education and information. As if in modern day soliloquy and from the depths of my heart I pour out my poetic rhythms and pleas of a cure for our illness while sharing our triumphs and success with all warriors and advocates alike. I hope to one day rank amongst the likes of one Dear Abby who penned quite eloquently for the masses and created a niche all her own. If you wish to master in etiquette you turn to Emily Post; however, if changing someone's day on a whim with a sparkly delight you search out Glitter Queens Global and I'm quite proud of our brand. This has been a long day in coming and with great expectation as our dear friend, Pip, it has finally arrived!
Why Glitter? Glitter has been an ongoing and playful component between my longtime girlfriend and I prior to my leaving the workplace and entering the world of chronic illness. She and I would gleefully exchange envelopes, gifts and random cards in hopes that we would be the one to "glitter bomb" the other more creatively than the time before. Our game continues to this day. The pseudonym - "The Glitter Queen" was jokingly given and lovingly accepted after I sent a get well card filled with glitter to a friend's uncle who was ailing and in the hospital. The phenomena quickly caught on and grew from store bought cards to homemade, one of a kind pieces and a team now known as Glitter Queens Global. There are no salaries here. We are strictly volunteers. All of the woman on my team battle not only the incurable #Gastroparesis (paralysis of the stomach muscles either via diabetes or through damage to the vagus nerve / idiopathic as simply put as I can in this writing) but also a host of other ailments / diseases as well.) We ARE the chronically ill serving the chronically ill! How beautiful is this!
My story wasn't always a shining beacon of hope! I was born with a neuromuscular disconnect in my eyes meaning that my eyes do not operate as a team and I have one dominant eye which is my right. I do see out of my left eye yet I do not use them as the average person does. Forbearing all scientific terminology let's just call it "weak muscles" or a "lazy eye". I was always an extremely joyful child per my Mother and life never seemed to get me down. Childhood; however, was not easy. When you have eyes that do not operate as a team there is plenty of room for name calling, bullies, time to be shoved into lockers and pillows for sweet April to hug and to hold while tears streamed down her face each day after school. I delved into books, the Dictionary (yes, I am a super nerd) and my school work. I was invited to be a part of MENSA during my seventh grade year; however, my Mother feared I would become even more socially awkward so she declined. I was able to become an inductee into the National Honor Society that year. I even attended USF during the summer of my eighth grade year thus propelling my "super geek" status. Following corrective eye surgery, a haircut and a slight wardrobe change the tables turned for me and suddenly the popular crowd could not get enough of the new girl. I was perplexed at the dichotomy of old v. new April "change of status quo" friendships that came my way and just declined. I look on the inward appearance as I still do. I do not judge a book by it's cover and did not understand why people all of a sudden wanted to be my friend since I had always loved me just the way that I was?! Kids can be extremely cruel and perplexing!
To get to the point of why we do what we do let me speed things up a bit. An extremely precious and close friend of mine have a theory that everyone has a story that can benefit the masses; possibly a similar story or with similar threads. I will one day share my story with the world; however, we must be careful in the sharing to refrain from leaving unrepairable emotional wakes as well. What good would it do if in my telling my marvelous story that I in turn hurt those around me? It wouldn't. I am bound as a life coach to a code of honor to promote healthy and positive wakes and being as I am now emotionally healed from these situations I will say this - during my childhood, adolescence and early 20's I had many things thrust upon me that no child nor teen should ever have to encounter. No young woman should ever have to endure what I endured but I know now that if these people were whole and complete individuals within themselves that they would have promoted healthy relationships instead of devastating not only themselves but also the lives of those around them. They would have healed instead of wounded. I am not referring to my poor choice of friends or going to clubs etc. There is so much more to share about me and my choices yet this is not what I am referring to here. These situations I could not control. These tragic times taught me great faith, compassion, tenacity, courage, kindness, strength, a level of forgiveness I never knew I could possess, heightened self awareness that I was born with and self love. I will say that on October 31, 1991 after an accidental overdose I flat lined for a minute and my Mother thought I was dead...well, I was. Paramedics revived me and I was in a coma for 3 days. The physicians told my parents that if I survived - IF - that I would be a vegetable for the rest of my life. Three days later I woke up with no ill effects whatsoever so let's just say I LOVE MY LIFE, chronic illness and all. I went through a divorce later on that almost devastated me to the point of clinical depression which no one ever saw me show signs of yet here I am! I have healed from it all. I have gone through the necessary steps to learn and relearn to love me first in order to properly love others - this is key and some extremely poignant coaching (on me!). I was able to become a certified Career / Life Coach before leaving the workplace and entering a life of chronic and incurable disease. This coaching and my years of training and service in the church as a worship leader for 20 years and a brief stint as an Associate Pastor (brief yet every so rewarding) helped me do what coaches do best: reframe, refocus and repurpose that Dream! The Dream and your Life's Purpose NEVER die. The only thing that will consistently and continuously change is the vehicle in which you use to fulfill your Life's Purpose. There's free coaching tip number 2! You are more than welcome.
Glitter Queens Global is a Full Service Outreach Center of Hope, Love and Cheer since 2014. I have a team of magnanimous women who serve our entire Gastroparesis (#GP) community and beyond with their whole heart and a lot of #Glitter. I do it because I am thankful to be alive! I almost lost my life once as a teen and twice since entering this GP journey and we are not promised tomorrow. We watch warriors struggle, including ourselves, each and every day and we know the value of a day, of an hour and even a minute! #GLITTERQUEENSGLOBAL has expanded into raffles for some time now and they are now held on our community page at www.facebook.com/GpGQueen I worked so hard to rebuild myself up after being torn down. I know abuse of all shapes and sizes and all I want for the world is for every piece of #Glitter you see from us to represent a little love from up above. I have a saying: You are treasured, You are valued, You are LOVED and you ARE! I want every single person that I meet to feel encouraged, affirmed and edified after leaving my presence. Am I perfect, No, but neither are you. We are a work in progress but I do strive and aim to leave positive emotional wakes. I am about brightening up your life; just because I can. Maybe it's the former preschool teacher in me or the fact that I have 2 children who have captured my heart forever (one with #autism) but as a Mother my heart is HUGE! Let us shower you with Love aka #GLITTERYcheer and we would be more than happy to send you something if you would go to the contact page and complete the information tab. Keep in mind we are battling incurable illness so please be patient - SMILE!
If you have read this blog then thank you because it is my heart on paper. I wish for you to take away these things:
1: You are treasured, You are valued and You are LOVED
2: You are enough
3: Start speaking 3 positives over yourself every day because you deserve to be happy starting right now
Thank you to my entire team of #GlitterQueens. We are here because of YOU and all of our supporters. There is much coming down the pipeline including an introduction of a new branch and our corporate umbrella.
The Glitter Queen
#5millionGPStrong #Unite4GP #TakeABite4GP