When we live with #chronicillness of any kind, we often encounter negativity from the outside world. Often times our families  dismiss our illness or fail to even educate themselves of our struggles.  Our friends who were once by our side during our days of #health have seemed to slip away while we spend countless hours in and out of doctors' offices, hospitals and institutions seeking answers or being subjected to myriad of tests, scans and the like. Even our own physicians tend to waiver from "hopeful" to "passive" as they run out of either attempted diagnoses or treatment options depending upon our cases.  Support groups can either be a blessing or a curse and come with rules or restraints that some find cumbersome.  Most have made beautiful friendships that have aided them in their journeys and have gained much knowledge otherwise unfound even in their own physician appointments.  

​The life of the #chronicallyill is for the strong, often times referred to as a #warrior, and one who has tenacity, perseverance and will power to endure such a tedious "race" - so to speak. There are many hurdles and obstacles to overcome. Frequently, fingers are pointed at negative comments, diagnoses, memes, articles and so on; however, what if one of the greatest mountains to conquer is actually staring us in the face each and every day? What if it's us? Are we disrespecting ourselves in our daily lives? Are we putting ourselves down and playing into the very thing we despise? Have we given in to the lies and the lines fed to us by our family, friends, groups, those who do not nor will they ever understand the life of a chronically ill warrior? Could we be our own worst enemy? Are we causing negative and toxic emotional wakes in our own minds, emotions and bodies every single day which are contributing to an on-going decrease in our own health? Have we become our own poison? In turn, are we poisoning those around us without even realizing "we" have become "them"?

A great way to discover this would be to go through your phone, private messages, emails, social media posts or ask someone extremely close to you who will be honest with kindess.  You will be able to see within your own writings and read your own tone with a visual presence to see if you have fallen into a habit of self deprecating behavior.  Living with any chronic illness is extremely stressful. Studies have shown that people living with chronic illness are prone to mental health issues such as anxiety and depression.  This is not uncommon and there are ways to overcome it, if you are willing.  You are not alone.  No one can pour out of an empty cup and hurting people hurt people.  The most important thing is to heal yourself first to prevent you from perpetuating the creation of negative wakes or triggering hurt in the lives of those around you.  The process takes time, requires developing self awareness and most often the assistance of a professional therapist, counselor, psychologist and / or psychiatrist - yet it is most certainly achievable.  Believe me, I know.

In the theme of sharing education, information and affirmation within our blog posts, we thought we would shed some light on this topic of self love and living with chronic illness.  Life isn't always a bowl of cherries.  Not everyone is born with a "positive" gene. We aren't suggesting that everyone always remain superficially positive.  That isn't real nor is it helpful. Learning how to seek the good in life while embracing chronic illness does have health benefits overall as we have done some research for you.  We are including some links regarding the physical benefits and psychological effects of a positive mindset.  Balance is a must.  Self Love is a journey and well worth it. Therapy is extremely cathartic and aides in releasing toxic emotions built up due to many reasons either caused by ourselves, the outside world, illness etc.  A strong support system, be it in a group setting, personal 1-on-1's, online connections and so on, will strengthen you even further while you continue on your journey and lighten anyone's load. 

Our hope for all who battle chronic illness is that each person loves themselves first, so that they will be able to love the next person just as much, creating a ripple effect which will change the world.  May you find the strength to let go of anything toxic in your life, even if it is your own self talk and begin walking in your freedom today.  You are treasured, you are cherished and you are LOVED!

​Links:

Happiness and Health - Harvard Edu

​Positive Thoughts and Depression - LiveScience

Positivity and Health - John Hopkins
​

​Happy #Warrior #Wednesday! We had a slight computer glitch so we are posting on #Thankful #Thursday.  Thank you for your understanding.

​We thought we would do something different this week.  During one of our recent "GO LIVES" with Glitter Queens Global we had a conversation surrounding free ideas where everyone could get involved and feel a part of all of the joy that the season brings.  We are all about spreading the love and finding ways to include everyone! With your permission we have compiled a list of not only our home suggestions but also the marvelous ideas given in both lives with many thanks to you.  We hope that everyone can find something within this list that will be a blessing to another.  Perhaps, you will begin a family tradition not only during the Holiday Season but all year through.  We wish you much health, happiness and so much love always.  It is not about the gift but about the heart of the giver.  Merry Christmas, Happy Hanukkah, Happy Kwanzaa and so many merry wishes surrounding any festivities you may be celebrating this year!

​Share the love this Holiday Season without stretching your wallet:

​* Make homemade cards for Hospital programs both adults and children

​* Send email greetings / voice greeting or personalized videos

​* Write a poem / song

​* Draw a personalized picture / paint or color a premade coloring page

​* Dance to your favorite song / perform a skit and post or send to family & friends

​* Make homemade crockpot potpourri

​* Make homeade ornaments from items around the house (plastic, glass, garland, glitter, stencil the outside or paint, use stencils or personalize it by writing names on them)

​* Create a homamade piece of nail art using scraps of wood from around the house. Draw your design on the wood, paint, hammer nails into place and wrap on string.

​* Write a special quote on a piece of paper and decorate to the individuals personal style
(this one costs a stamp to mail)

​* Place a phone call, send a text, skype or voice / video chat to spread the love & holiday spirit

​* Have the kids sing a holiday song, do a skit or video and post or send to brighten up someones day

​* Make an abstract mobile from a wire hanger. Personalize it with photos, key chains, art prints, post cards, or any item that reminds you of them or vice versa!

​* Wrap scarves and hats with a warm note around trees for the homeless especially when cooler weather is approaching.

​* Take a neighbor food / something to drink or visit another who may be alone

​* Make a coupon book filled with things that you can do for another

​* Sing or write a song / play something on an instrument

​* Sign (ASL) to music for the hearing impaired

* Bake cookies or a holiday treat and give to those who can enjoy


​There are so many ways to give back not only during the Holidays but throughout the year without requiring purchase.  The suggestions given by our beautiful community members are extremely heart warming and filled with love and creativity!   We hope you all enjoy them as much as we have.  Happy Thursday and may your season be bright. 

#HolidayCheer #Love #nopurchaserequired #GivingHeart #Giftsabound #Fromustoyou
​#MerryMerryalltheWay #HoHoHo #Hannakuh #Christmas #Kwanzaa     

Today, Thursday, we are sharing our #WarriorWednesday which in turn is apropos for the very piece being offered today.  With any chronic illness we must know and embrace our limitations even it means that some items must be placed in the "do tomorrow" file so that we may take the time that our tired bodies need to refuel!  Thank you, everyone, for understanding our brief delay in posting. 


​
​My Letter to Gastroparesis
April 18, 2016
Mandie Cox

Gastroparesis,

I think it is about time that I tell you my feelings. Other's know how I feel about you from me trying to explain you, but do you? Do you know the damage being on the disease that you do?

I was diagnosed with you about three years ago. It wasn't an easy road. I had test after test. And ER visits over and over before they found you finally through an emptying study. Even then my gastroenterologist couldn't explain you. You were suppose to be mild, but my symptoms weren't.

I tried eating multiple times a day for you to calm down a bit. I tried pureed foods, vegan, vegetarian, baby food, liquids only, not eating at all, the list goes on and on. But you refused to be tamed. I was put on medicine after medicine. Many of which were more concerning it seemed than the symptoms you already gave me.

My life changed. I started hating going to work. I didn't want to be perky. I didn't want to fake okay again and talk to therapists from around the would (PT/OT/SLP's) to help then find the perfect job. I was exhausted. I frequently would be alone in my office(as I was the only employee) vomiting after I ate. That became my life.

Your were winning. You were breaking me. I was scared, and I felt alone. No one knew why it was so bad. No one knew what to do to help besides pump more medicine into my system. I remember going out to my car and just bawling. Turning KLOVE up all the way and crying our to God on every single song.

Finally I realized there had to be more to life than this. Everyone telling me it shouldn't be that bad medically I decided that maybe my emotion from my job was making this worse. The fact that I had seen so many people quit or fired. I knew it was time to move on and I did.

Things slowly improved. My flares got farther apart. When they happened it was usually because of compaction which made sense because that affects everything in digestion too. So I figured I can handle this. It won't ever be normal, normal. But I knew what foods usually would make it worse. That was just life. The pain of getting backed up was normal. So I dealt with it. Another side affect of having horrible insurance and not wanting Dr. bills to get that bad again.

You tricked me. I thought you were essentially gone. I started working out, and eating healthier. Swearing I wouldn't let it come to that again. Then I October 2015 you reared your ugly head. Thank you by the way for starting right during the holiday season. I greatly appreciate it!

I was working two jobs at the time. A fulltime job that I had already been laid off of once and rehired and an amazing seasonal job at LUSH. LUSH was bringing me back to life. Showing me that people can be full of love an affection (mainly). I made new friends quickly and even though I was working 12-15 hour days between both jobs I knew I could deal. I knew I would get to LUSH and get to dance and smile and pretend I was okay for a little bit. And maybe for a little bit even trick myself that I was.

I knew you were back when I couldn't even keep liquids down for days at a time. When I felt like I had the flu when I didn't that never ended. I knew you were back but I didn't want to admit it. I left the job again that I wasn't happy at. Thinking that would solve things again.

I then got my dream job. I was so excited. A recruiter at Easter Seals! It is amazing to feel like you finally are good at something and fit in. I got compliments constantly for how amazing I was doing and my style. I felt good. Everything in life felt good. That's how I knew something had to be coming. Don't get me wrong I love being happy and content, but I know life is full of storms. I knew that at some point something had to happen. That being said I had to hope that it wouldn't be this. It couldn't be. I was wrong again.

You are back reeking havoc on my life. I lost that dream job I was just talking about. I lost being able to attend college right now to finish my degree. I have lost the ability to do the things I love and want to do. Even things I don't love like cleaning you make hard.

I have lost the ability to visit my Dad and Mom like I want to. Something I have always been faithful in.

You have made me angry. I hate you. I know hate is a strong word and something I don't usually use, but I do I hate you and am mad at you. I never know what to expect. The pain, hunger, nausea. The fact that most doctors and people don't take me seriously because you have made my "sickness" almost constant.

However in spite of all of this and the hatred I have to say thank you? I know what am I talking about? You have taught me how to fight, how to speak up for myself. You have made the relationship between me and my fiancé stronger than ever in spite of the pain. My friendships; stronger than just about any friendship. Because of you I have connected with some amazing new spoonies across the US. I can connect with believers like never before. It is one thing to have faith when you are fine, it's a whole different story when you have health battles.

I love that you have helped open my eyes to see how many are struggling. I know that I am never alone, and neither are they. Because of you I hope to be a comfort to others just diagnosed 0r struggling for years and not making connections.

I want you to know that I know this fight isn't over, but moreover that you won't win. I know you think you have some days. Those days I stay on the couch writhing in pain. I wonder if those days you give yourself a pat on the back. I want you to know I don't care. You may win a battle, but you will NOT Win the fight. Do you want to know how I know this? I am strong. I am a fighter! I am optimistic, and when I am not I have friends and family who are. And when I feel alone, I am not. God is here. He shows me this in every way imaginable.

Let me give you an example. I went to pick up yet another medicine and you know what I saw? A sparrow with a twig in its mouth. Clearly building a nest. To anyone else this means nothing, to me it reminds me of the verse I needed. Matthew 6:26 Look at the birds. They don't plant or harvest or store food in barns, for your heavenly Father feeds them. And aren't you far more valuable to him than they are?

My God loves me. You can take whatever you want from my life Gastroparesis, but guess what-you can never take that away from me!

Sincerely Your Human to Forever Torture,
​
Mandie

'Melanie Harris was kind enough to share her journey with us.  Thank you, Melanie, for allowing us to walk with you and for opening up your beautiful heart.  We appreciate you, your artistry in jewelry and your compassion for our community. 

This is Melanie's story:

One month to the day of moving to Florida for a life of happiness, warm weather, beaches and opening up my business here, I was sick. Very sick. I went into the hospital for the very first time. I was admitted. I had lots of pain. After a million tests and six (6) days later it was determined my gallbladder was less than 5% working correctly and had to go. So, they did the surgery and said you're going to feel great after it's out. There is only a 1% chance you will have the pain you had with your bad gallbladder. Ok, take it out, the pain was unbelievable. I had the surgery Laparoscopic. I came home the same day of surgery to recover at home. Three (3) weeks later I'm still feeling bad. Well, maybe you're a slow healer, ok. Two (2) months I'm still feeling bad and I've got new symptoms and I feel worse. Give it another month he says because I had to peel your gallbladder off of your liver.

A month goes by and the pain is unreal, my hair even hurts. I'm frustrated. So, he sends me for a colonoscopy, an endoscope, and a stomach emptying test. I come out with two pre-cancerous polyps and Gastroparesis (GP). What? How did that happen? Also, remember that 1% who will never get rid of the chronic pain?  Yep, I'm it. I'm living day to day and many days cannot make it out of bed. Life is hard. It shouldn't be so hard for a 'used to be healthy', 42 year old, bead store owner. So, fast forward two years later and now I've noticed other symptoms, I'm getting scared. I've lost a ton of weight, I don't want to leave my house, my anxiety levels are sky high and the daily pain from GP and the pain in my side where my gallbladder used to be depresses me.

Why? Why me? The doctors around here look at me like I'm crazy and just pass me off to another doctor who thinks he has the magic to make me well again. The last doctor made me so sick I flat lined in the ER this past New Year's Eve in terrible pain. I now get "contractions" in my stomach, my hair is falling out and I've broken a couple of teeth. I'm depressed. I used to work very hard, was a happy person with lots of love to give to my friends. Now I live far away from them all and I know no one except my husband. He is good to me. He is frustrated, he wants to help me. He doesn't know how. I feel guilt. Really big guilt because when I got sick and had to make so many changes, he basically did too. We moved to such a beautiful city and live five miles from a beautiful beach. My dream came true but it's really hard to love it and enjoy my new life because my life has changed so dramatically.

Every day when I wake up, I thank the Lord that I woke up today. I move an inch and want to cry with all the pain I have. About a year ago I started searching online for some support for myself. Maybe someone who feels like I do, has some of the problems I do. I joined a couple of the best GP groups. I'm so happy to be able to ask questions and also have somewhere to go where someone can understand what I'm going through. Recently I met April of Glitter Queens Global. I cannot tell you the help that this community has shown me. I look forward to the daily posts of encouragement and strength, not to mention all the work that the ladies do to get more awareness out there for our community. They work so hard! I don't know how you do it! You guys are awesome!

Thank you all for your friendships, concern, advice and compassion. I appreciate it more than you all know. I may not post a lot but I do read as many posts from the community as I can and give encouragement to those suffering and heartbreak when someone passes. So, today as I write this, I'm really saying thank you, thank you for encouragement, understanding, fighting for our cause and most of all, thank you for the friendships! I hope that someday there may be a cure for us all so we can have our lives back. But in the meantime, I'm just grateful to be breathing on this earth with these great friends!

Glitter on my friends...

​Melanie

My story could take days to tell, but I'll try to keep it short.

In 2000, I had a gastric bypass to lose weight. I started losing weight but my gall bladder was already removed. I went through 4 bouts with chronic pancreatitis, and a huge hernia repair which seemed to be the final straw!! I had severe pain when eating and there were no "go to" foods. What I ate had to be pureed and in less than two years I lost 100 pounds. I had to go on 'big guns' opiates for 3yrs just to function. In a 6 month period I had 5 feeding tubes, each one with a different problem.

Finally I said if I couldn't survive by eating enough that was that. I thought life was over. I headed to that "dark place" and was ready to die. Then a small voice came to me and said there is HOPE, you are not alone. I found through the groups many people struggling like me. A spiritual PEACE started to come over me. I remembered "Let go and let God". My favorite saying is: "Action is the magic word"!! I became an advocate for awareness. For
13 yrs in and out of ER's being told it was all in my head and that I was a drug-seeker. Now I know that was never true.

I am still in pain some days but I have found PEACE through a renewed faith. I can't have rainbows without ☔ rain. I won't quit before the miracle!

​Carolyn ~


​Carolyn is also a #patient #advocate and is owner of a support group:

​Gastroparesis: Love, Share and Advocate

​Won't you consider joining with her for support, love and to spread #awareness for #GP?

​
I've been taking some much needed "me" time the last few days and quite frankly, my body put me down so I have been "catching up", enjoying my family and taking in life.  Anyone who knows me will tell you I am a huge proponent of balance and the power of restore, rebalance and reflect.  What I call "Me Time" is a mastered skill for some, comes easily for others and as I have found is something many do not fit into their schedule.  If you find yourself in the land of the #chronicallyFabulous aka the #youdontlooksick club then I implore you to schedule time for yourself as you would your tedious and exhausting doctor's appointments.  Our bodies deal with much and taking care of ourselves should be top priority.

​During my "me time", I have been quite sick.  I have sat with physicians who did not give me reports that I wanted to hear.  I needed to reflect and reign myself back in.  I am a logically driven woman and when hit with emotions I need to center.  I am fully aware of my Myers-Brigg's (MBTI) report and my Enneagram (tests I feel every human being should participate in as a part of their overall growth and self awareness path).  Although, there are many, these happen to be two of my preferred.  No matter, I found myself going over my current place in my #chronicillness journey.

​As I began this process over that last 4 days I reminisced over the last 7 years.  I reflected from the once healthy life that I had.  I remembered being fully able and capable of holding down a fulltime job, volunteering approximately 20 plus hours afterwards while being a single mother and still finding time for another passion of weight training almost 5-6 days at the gym at 5:30 every morning or in the evening if I had missed my alarm.  I spent much time reading and praying as I still do.  I hold my belief system yet am open to you and all religious aspects and opinions as I am a person of relationship and I attend a church who believes the same.  Mine is not to judge yet only to love which is a platform I have held since a child, for I know the pain of judgement and it is not one I wish to pass on to others.  I reflected upon becoming severely ill and floundering while doctors shook their head while I was literally in and out of hospitals via car and ambulance for two straight years until I received the diagnosis of non #diabetic #idiopathic #gastroparesis and sent on my way with little literature and no support system.  I had to find a "new me" with a new goal and reframe my entire life's purpose with this new body I had been blessed with and ever surmounting diagnoses as my journey continued.  I fretted every single test and scan as it seemed to only garner me a new diagnosis or specialist as it still does. What it did bring me was community! What it did bring me was something I never thought I would find...an ocean!

​Today, I sat and listened to a message quite profound.  A message I have been repeating for years.  "You're going to have a very hard time keeping up with being me" - my words.  I believe everyone is born an extremely unique version of what the world needs in that moment they arrive and are granted a skillset which only they can give but in working with others in combination with peace, love, harmony and unity can accomplish so much more than just one.  The message today was "We are greater than ME"! It is as if I were speaking directly back to myself and it was quite refreshing and encouraging.  You see, as I was reflecting over these last few days I was also reading.  I was reading emails, private messages and texts.  I was going over the tone in which they came to me.  Did they mean to be condescending? Did they mean to call me "a queen" because my pseudonym is "The Glitter Queen" yet that is in love as our entire team literally blesses the sick, hurting, broken and lonely or even just because to bring love, hope and cheer (with a little added sparkle and glitter) as a form of my very heart with joy as an extension of my life so why would this be done to hurt? Perhaps, I am mistaken or perhaps I am being awakened to someone's pain and they need more love.  Maybe, they do not feel they are a drop in the ocean but merely just a drop. There was also many messages of encouragement that we are indeed an ocean and so I continued on refocusing on the greater good and community heart that I have.

​The message today spoke about how often we overestimate what we can do by ourselves while underestimating our own contribution to a greater community.  What we can't do, someone else can.  We do have impact as individuals but just think of what we can do together! It is essentially my entire mantra handed right back to me on a silver platter.  The man delivering this message took it a step further though.  He broke down a very slippery slope of what could happen if one stays in the 'me' category as if to be only the drop and not the ocean.  He addressed the ego! Oh goodness! Ego often times does not want to be a part of the greater good and has a difficult time working within community.  I know none of us have ever encountered ego in the chronically ill community, our workplace, church, family, physicians office or even trying to make a difference while advocating but I will share because I wanted to tuck this away to ensure that I, myself, do not venture into this arena nor do the people involved in blessing the entire population in which we serve so here it is.  1) Ego tells you "I am conforming" / I cannot conform to this community or I will lose myself and my agenda 2)  Ego likes to be needed 3) Ego likes to do what it wants in its own way / no team playing and 4) Ego will tell you that you're not getting credit.  I have to say that when I heard this I was disheartened.  I felt sorry for those with this mentality and I can say that for me I do not ever want to appear this way.  I want people to look at me and say that I gave with my whole heart.  I want people to look at me in quite the opposite manner.  I want to be known in the ways in which I will describe below. 

​The opposing factor in ego is the "WE" mentality.  I stole a phrase from my brother which everyone knows and says as well but it is famously known in my house and that is "Teamwork makes the DREAM WORK" and it does.  I cannot do great things on my own.  I can do things and I can do a lot of things pretty well; however, I am wise enough to know that it takes a village.  A phrase was posted up on the large screen today that scripted: WE gives us momentum and impact that the greatest "I" in the world can't accomplish.  Well done indeed.  The 'we' loves to be a part of something better and is more than happy to be a "cog" in the wheel.  I about squealed because those are my dear friend's words! I knew she would be elated that someone else held her theology and I would be able to blog about this later on! Be a cog! These were not my words but his.  The 'WE" says 1) How may I contribute? 2) What can I give into the community? 3) How can I serve? and 4) Who would get missed if I am not there? These are absolutely contrary to the ego philosophy and parallel to the mindset that I hold dear to my heart.  I strive for excellence, comradery, unity, citizenship and a place where all people feel like they belong and have a home.  I yearn for each human being that I meet to leave my presence feeling exuberated and lifted up as opposed to torn down and downtrodden.  Community is the ocean and one drop is what makes the difference. 

​Far too often we cut people off and toss them aside knowing not that they are the very being we need as we continue on in our journey.  Am I telling you to allow every party into your inner circle of personal thoughts, dreams and goals? No, I am not.  What I am suggesting is that we take a deeper look into our personal theology of the human presence as a whole and ask what if? What if I was the one who extended the hand instead of slapping it? What if I was the best version of myself as opposed to trying to be the better version of someone else? I said this a long time ago.  If you were me and I were you then one of us would be irrelevant. I don't need to be you.  You don't need to be me.  See, if you think about it, the only people who suffer are the ones who are looking at us and are at the receiving end of who we are trying to "copy".  If I am trying to be you then that will surely become an exhausting job.  How am I going to be able to keep that up? The gut honest truth is - I can't. There is no earthly way for  me to be you and vice versa. Who perishes because of this? Those who have been on the receiving end of my charade.  Did your heart drop yet because it should have.  Those people will be so devastated if, say, you are trying to paint for them and you can't.  What if you're trying to crochet and it just isn't coming together.  What if you're trying to keep up as a "well" person and you're chronically ill? What then? We must accept who we are and then be the absolute best version of ourselves while offering that version to the world and be a part of the ocean.  That is how we make the most marvelous part of history come to pass.  That is what authors pen about.  That is what gets the #BIllHR2311 onto the floor.  That is what makes great teachers, leaders, #advocates, song writers, poets, mothers, fathers, sisters, brothers, children and so on. That is what makes a great nation.  We are a community of masterfully crafted individuals, secure in our own skin coming together for the greater good of whatever cause or platform you are here for; whatever your life purpose is, offer that "YOU" back to life!

​I came today to encourage as I often do and to love on you. You are so treasured, cherished and loved just the way that you are.  I hope that you are comfortable in your own skin because it is a masterpiece. It is you and everything in it.  Your heart, mind, soul, talents, gifts - it is all you and what makes you unique.  Together we are greater.  Together we can do great things as a community and as a nation.  I love the human condition much.  I hope you were lifted up by the message I referred to here as much as I was today in hearing it.  I am honored to be a part of any community and I will always be a servant to the human population.  It has been my call since birth, a practice since childhood and it is in my blood. 


#masterpiece #beaDropBetheOcean #Community #GPStrong #Reflection
​#Peace #Love #Harmony #GpNation #CureGP #Chronically #Fabulous #BeYOUtiful
​#OneLove #LoveYou #TogetherweFIGHTTogetherweWIN

​I am going to share some pretty personal information. Not a big deal to some of you, I am sure, but to me, it is huge. I am not the kind of person who does this – or at least I did not use to be.  But things have changed for me.  In February 2014, I spent a week in the hospital and was diagnosed with gastroparesis.  I am guessing most people have never heard of this; I know I had not, prior to being diagnosed. 

Since then, my life has been altered in ways I could not have imagined – overnight.  One day, I was eating at buffets, and the next day, I was unable to tolerate all foods and liquids.  I was hospitalized with severe pain and vomiting, put through a battery of tests (including one particularly terrible one where they forced a tube down my nose and pumped my stomach), diagnosed, and sent home with only a brief explanation of my illness.  For the next few weeks, I was on a liquids-only diet and told that I would gradually work up to soft foods and solids.  Unfortunately, nothing like that has occurred.  I am now able to eat some soft foods, in tiny amounts, but it is clear to me that I will never again be able to eat “normal” foods in “normal” amounts. 

At first, I told myself I would not let this disease define or control me – it simply WOULD NOT be the center of my life.  But as time passed, I began to see how foolish that was.  Every single day, every second of every day, I think about food.  I see it, smell it, cook it, and feed it to my family; but I cannot have it.  I look in the mirror and see a skeleton.  I try to eat even small amounts of food, and I am in agony.  I am weak and fatigued to levels I did not think were possible.  Some mornings, I do not think I have enough energy to get out of bed.  I can barely concentrate and function enough to do everyday tasks.  And almost every night, my husband must help me up the stairs to bed because he is afraid I might fall down those stairs.  My 12-year-old daughter has seen me vomiting, screaming in pain, lying on the floor crying, and on the verge of passing out.  At times, it has frightened her so much that she has asked me to get “Life-Alert.”

I grieve over the fact that I can no longer travel or get out of the house for much of anything – over missing family events, my daughter’s activities, picnics, concerts, and other such functions.  I worry that I will not get to see all the significant milestones to come.  I am not on the verge of death today (at least I do not think so), but when I look in the mirror, I realize that people like this do not have long life spans, and it bothers me.  I worry about what will happen to my family when I am gone.  I fear my daughter’s reaction to my death and the consequences that might result from her growing up without a mother.  I want to be there for her when she is sick, scared, or needs advice.  I want to see her turn "Sweet Sixteen."  I want to hear about her first kiss.   I want to see her grow up, graduate, get married, and have children.  I want to know that she has a good career and a loving family.  I cannot bear thinking about the pain my death will cause my husband, and I am concerned that he might not be able to function when this occurs.  I want to grow old with him.  Facing the strong possibility that none of these things will occur is anguishing. 

I get frustrated because people do not understand how my life is affected by GP.  If you saw me on the street, you would likely not realize I am sick.  I do not look sick.  People frequently ask me if I am better now.  I cannot seem to convince them that I am never going to be “better,” not in the sense they mean.  I am told I “just need to eat,” or that if I would try yogurt, I would heal.  My own doctor accused me of being anorexic and advised my husband to “watch me.”  And though I know people mean well, it still bothers me.

I am angry because I am a control freak, and I do not like being a slave to this disease.  I do not like being “helped” with everyday tasks and always having to rely on others for aid.  I have screamed at, smacked, and pushed my husband away for simply trying to assist me.  I have thrown things (including food) across the room in fits of anger.  I have intentionally gone without eating – even though I know I should not – just to “show” this disease who is in control.  Mostly, I am angry because I do everything I am supposed to do – eat the right foods, exercise, and ingest the known medications – and I am still sick. 

There are times when I am in such agony that I can do nothing but cry – lie on the floor and beg God to just let me die.  He does not – and I am thankful for that.  I think about others who have this disease who are much worse than I am.  I know many people who have sought treatment for dehydration, pain, and malnutrition, and who have had to resort to feeding tubes or ports for nutrition.  I sometimes look at them and think that this will surely be my future, too, and it scares me. 

I do not understand why I have this disease, but what I do understand is that it is somehow important for me to share my experiences and let others know that despite my challenges, I mostly have a good attitude about my circumstances.  In fact, I believe I have been blessed because of my illness.  Since my initial diagnosis, I have become heavily involved with online gastroparesis support groups.  I have also created and now co-administer an advocacy group that seeks to foster awareness and change for my community.  I feel connected and bonded to others in ways I would have never dreamed possible a year ago. 

I have discovered a whole new purpose and meaning to my life.  Over the course of my journey, I have seen unimaginable suffering and need.  I am overcome with compassion and concern for the people I have met, and I am likewise overwhelmed by the kindness and support they have shown me over these past couple of years.  I tell you, honestly, every person I know has helped me in some way.  They have visited, called, helped with chores and tasks, and simply cheered me up with their stories.  Please do not ever be convinced that you can do nothing to help or that you do not matter. To those who are struggling, your efforts to understand, your cheerful words, your helpful attitude, and simply your willingness to contribute and be present, make a difference.  I tell people all of the time that I hate this disease, but I dearly love the people I have met because of it. 

Survivor: Declarative. Questionable? Exclamatory!

The word (n) means 1) a person who survives, especially a person remaining alive after an event in which others have passed 2) the remainder of a group of people or things 3) a person who copes well with difficulties in their life 4) [law] a joint tenant who has the right to the whole estate on the other's passing. *

​Each and every person who battles a #chronicillness or any illness for that matter, in my humble opinion, would be represented in definition number 3.  Living with the day in and day out battles of anything incurable can be extremely breathtaking.  Imagine waking up every morning with great uncertainty of the day ahead.  You are forever at the mercy of your own flesh and blood yet your mind is as sharp as it was prior to falling ill.  Perhaps your illness was thrust upon you at childbirth and you hold not the prompted recall of a life once known. Still there is a longing of just one glimpse of freedom. The fire of hope burns ever bright while the war wages on into the hallows of the midnight hour. Shall we not call upon the parties who were medically introduced into the life of chronic pain and heartache.  The life once lived was stolen away by an unsteady hand in the blink of an eye as they awoke from a medically induced slumber only to find an entirely new life at hand. We are survivors.  No matter the reason; no matter the cause we had to learn anew and reinvent the wheel, so to speak. 

​Live and let live is a term used often times in a frivolous manner.  When one is trying to escape a responsibility we optimistically throw caution to the wind and call out, "oh, live and let live" but do we or are we?  This phrase is also used in a manner meaning one should tolerate the opinions and behavior of others so that they will similarly tolerate our own.  I find that explanation rather perplexing as it seems to be a "strings attached" version of acceptance. Further study finds a definition offering a clique to refrain from inserting ourselves into others affairs and preferences.  I would applaud that version having spent time with coaches and executive coaching staff who believe it is wise and appropriate to be the best version of ourselves, without judging or metaphorically 'playing' in another persons sandbox.  Live and Let Live is a declaration our population of survivors would do right by ourselves to put into daily practice! There is much to live for within our minds, hearts and spirits.  I can share a brief piece of my story in this writing and maybe you will see why I am confident in who I am regarding this topic.

​On October 31, 1991 I died.  I was an adolescent at the time with the weight of the world on my shoulders.  My family was a strong unit; however, like many we had our hills and valleys and at times it felt like an extreme version of heaven and hell on earth.  My life experience far exceeded that of any other in my age group and I was drowning.  I was brought up with a strong faith base and have the belief that my life is not my own to take but I had myself convinced that if I could just sleep for a few days that when I woke up, somehow all of my problems would disappear and all would be set right again.  I was absolutely blinded.  I overdosed on pills and that night I was dead.  The story I was eventually told many, many years later while sitting in the kitchen at my sister's home was (extreme paraphrase) that my lips were blue, I was not breathing and the paramedics finally pounded on my chest hard enough with mouth to mouth resuscitation to bring me back into a breathing state; however, my eyes did not open. I was rushed to the hospital and remained in a coma for 3 days.  The physicians allegedly pumped enough charcoal into me for an elephant (more likely a gross exaggeration but that is how I remember it and give credence that traumatic situations aid in different lenses and interpretation. I am relaying what I recall being told to me...the point is not in the numbers). I do know that the physicians warned my parents that if I were to come out of this coma that I would be in a vegetative state for the rest of my life.  Obviously, this did not happen.  I was given another chance at this life and frankly, I never wanted to pen this type of a story but I can say that I am forever grateful to be here serving so many on this earth.   

​This is merely one story of survival amongst many in the pages of my book.  I have gone through many heartaches, false accusations, betrayals, unsuccessful medical treatments or procedures.  I have experienced identity theft, trials in my marriage, a miscarriage, trying desperately to be accepted only to be rejected and the realization that I just needed to be comfortable with who I was because someone, somewhere is always going to try and find that one (or more) negative piece(s) in anyone's life.  It is all relative anyway especially given the lens in which one is looking through.  My personal development coaching process in 2007 / 2008 opened my eyes even farther to the self awareness journey of self love and healing reminding me to be the light as the lighthouse does.  I do not need to come off of my post; I merely need to be light. 

​We are constantly going to have trials to win, hurdles to overcome, mountains to climb, the peering eye of judgment to smile at, the knife to shield our backs from and the storms of this life to work through in order to see the rainbow. These obstacles are always given and have to be faced with uncertainty even.  What is most certain is you, how you choose to approach each one and the perspective, attitude and mindset in which you do so.  I will say that for me, I try to remain as positive as I can even in my darkest hour.  I have a close network in whom I confide in and that I trust varying in all walks of life.  I allow myself much grace because let's face the gripping fact that chronic, #incurable anything is taxing let alone adding family, friends, #advocacy and #philanthropic ventures of any sort.  We must be kind to ourselves.  I would offer this extremely crucial #coaching nugget which I have tucked in my pocket from my personal development coach and that is to walk in your own truth.  Every individual has theirs.  If we are accepting of the other's truth then peace and harmony abound.  If someone is unwilling to accept your truth and you are firm while being altruistic at the same time then any, even somewhat emotionally healthy,  party should eventually exit without dramatic theatrics.  Most important of all, love without conditions.  We all have a past, a present and a future.  To love another human and the human condition is to leave the proverbial shovel in the shed.  I have seen, lived, made my own regrettable mistakes and thankfully have learned the error of my own ways  in certain areas over the years and I can say that the world is a stronger, healthier and happier space when we use the dirt for planting as opposed to digging.  I am; furthermore, wise enough to know that I still have a vast amount of knowledge awaiting with room for growth along with the rest of the greater population.  Every round goes higher, right?

In closing, this month from October 16-22 it is #RightCareActionWeek.  We as patients have an opportunity to share our stories regarding our patient care and whether or not we have received care sufficient, lacking or over and beyond our standards.  I would say that during that evening of October 31, 1991 my family and I received great care otherwise I would not be typing this today.  I am thankful for that piece of my journey even though I should have made a wiser choice.  It did cost me some; however, as I was speaking to one of my fellow advocates to whom I have just recently connected with the other day, I choose to allow trying situations to make me better as opposed to bitter.  There is always a choice, a lens perspective in which we can alter and a step that we can change in any direction.  We are survivors in so many areas of our lives...all we have to do is look and then be thankful and grateful that we did.  I hope you will Live and Let Live because there are so many reasons why you should.  I believe in You.  If you take away nothing from this blog other than this please know that you are treasured, you are valued and YOU are LOVED!



​#HappyunBirthdaytoME #RightCareAction #Week #2016 #ChronicallyFabulous
#GpNation #OneLove #LiveandLetLive #SelfAwareness #Coach #TakeABite4GP
#InvisibleIllness #More #InvisibleNOmore #puttheshovelDown #Plantagarden
​#GlitterQueensGlobal #CureGP #WarriorStrong #SoldierOn #5millionGpStrong






​*ref: dictionary.com definition defined as

"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.*

​Chronic / Invisible Illness isn't kind and doesn't seem to show up alone.  I have found that it comes with other ailments either incurable or at times, treatable, yet most often not to the level of keeping the patient continuously comfortable.  Chronic and invisible illness is cruel indeed but it builds a strong warrior with tenacity, courage, tenderness, empathy and overall compassion for, sadly, the next newly diagnosed patient.  It changes you forever. How it changes you is absolutely up to you.  One thing I long for is change in perspective for the outer world:  for those who cannot or for whatever reason choose not to understand us. 

We, as patients, should applaud ourselves each and every day for being the warriors that we are. We war over the preservation of our health first and foremost!  We war for our families! We war for our children and their needs whether we are in the hospital or not!  We war for #advocacy and #awareness with fellow patient advocates and members of society using every form of social media possible. In one of the most selfless of acts we war for each other in support groups while we battle our own illness(es), taking the time to reach out to one another in posts, messages, sending cards, gifts and any form of support we feel necessary as a means of encouragement to our fellow man. 

​When one thinks of the "invisible" piece in illness the focal point may be placed on the excruciating feeling of pain, chronic nausea, fatigue, malnourishment, lines that may be hidden to a certain extent, hair loss that could be covered here or there, depression or anxiety that can be aided with medication and talk therapy yet I wonder how many think deeper into the invisible of the dark hollows of the soul where not many venture nor even talk about? Invisible and chronic illness strikes many lives in so many devastating ways and all too often warriors walk these roads alone.  In the same breath there are some who take up the badge or gavel as judge and jury and go on a man hunt as if we are burning the accused at the stake or some trial and lurking around corners to uncover every seedy detail of another's past or even making up one of our own to sell.  Each person's journey is their own most often riddled with rocks and roses.  Thorns and Thrones alike.  We are in this journey together and one would do good to uplift their fellow warrior for we know not the pain of their past or how hard they fought only to make this journey into today.

​Invisible means so many things.  Invisible can mean one day someone had it all and the next they found themselves broken and crushed when another walked away because chronic illness became too much of a burden to behold even though vows were exchanged. It can mean a diagnosis was given but after years of ambulance rides and long weeks in and out of hospitals divorce papers were filed in secret and now everything is divided right down to the children and the fish! Invisible could mean separate rooms, separate dinner tables and no conversation at all lest it turn into another round of verbal abuse too much to take because the wounds are so deep and the spoons are sparse.  Invisible can mean friendships that you thought would stand the test of time yet someone misunderstood one social media post and it wasn't even directed at them and now you and everyone that is a friend of yours is being 'unfriended' because you shared a post of a post of a post you found on Pinterest.  Invisible can mean you going out of your way to have tests performed again and again because your GES was positive at first and the second one was negative and now everyone is scratching their head and your GI has given up on you yet you are still distended and vomit at the very bite of a pudding cup so you cry all alone in the bathroom by yourself while searching online for support from your communities.  Invisible can mean you suffer mentally and physically yet no one seems to understand that illness is illness and you just long to feel loved, affirmed and accepted but you don't quite know where you fit it.  Invisible can mean you not only suffer yet your children do as well and you have no support from family or friends so your health continues to fail because every ounce of energy you do have goes into waiting on your partner and trying to maintain the house, finances and the needs of your children.  Invisible runs deep and it runs deeper still. 

​Invisible Illness Week truly needs more than just 7 days.  Invisible is 24 / 7 / 365.

​I long for the hurting, the broken, the lost, the cast aside and those who feel alone to know that someone out there cares.  I know what it is like to rely on faith and daily encouragement alone to get through.  I battled major depression and anxiety together.  How lovely, right?  Basically, I didn't care and I was concerned about everything at the same time.  It was extremely time consuming for me.  My journey has many mini chapters with a lot of lessons and stories all from different times.  I have endured much and I have overcome much as well.  I choose to focus on the good and the positive.  Even when life hands me a curveball; it may throw me off balance for a moment but I will steady myself and carry on. It is what I know how to do.

​I encourage every person battling #chronic #invisible #illness this:

​* Allow yourself grace for the journey. 
* Try not to feel like you have to justify yourself to anyone because you don't have to. 
* Give yourself time to acknowledge your illness if newly diagnosed
​* Know that you can do great things even with a disability. 
* If anyone doesn't like or love you then that is on them (given you are acting appropriately, of course)!!! You are treasured, you are valued and you are LOVED!
​* Don't (or try not to) worry what everyone else is doing or not doing.  Stress adds illness to illness.  Joel Osteen once said he doesn't go searching out what people write /say about him and that keeps his life positive. He said maybe he was ignorant but it kept him happy. I thought that was great so I put it in here. 
​* Be true to You. Stand in your truth and those who are meant to stay will stay and those who are meant to leave in their season will.  That came from my personal development coach, Dr. Donna Mogan in 2007. Great Coaching!
​* Take it one day at a time.  Be gentle with yourself. Pace the race Life is a journey, not a destination, remember?


Be #Hopeful, Be #Visible #beYoutiful YOU #IBelieveinYOU
#Gastroparesis #Diabetes #Crohns #IBS  #Fibromyalgia #Neuropathy
​#Depression #Anxiety #Autism #Hashimotos #Lupus #TBI
​#Cancer #ChronicFatigueSyndrome #Migraines #HeartDisease
​#ChronicPain #ChronicIllness and many more....

Links:

*Chronic disease and Mental Health info CDC

​Stress Management / Basics (Mayo)

​US National Library of Medicine (Home - NIH / PubMed article search)

(I placed the PubMed link because you can search out many medical research articles in this site for example: I was researching biofeedback and migraines.  Extremely useful I thought. I hope you enjoy!)

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.

I was working one day and I felt dizzy. I passed out and ended up in the hospital. Then my stomach and bowels shut down. I went through many doctors. Some said it was in my head. I was accused of being a drug seeker when I cried in real pain. I ended up being operated on many times. Unnecessary surgeries from uneducated physicians trying the quick fix. I was desperate for a cure when there isn't one. I ended up in icu many times with line infections from my picc lines and feeding tubes. I weighed 85lbs when God worked through a nurse at Baptist hospital named Jeanne to save my life. She gave me the name of a doctor who sent me to, "the Gastroparesis magician", Dr. Thomas Abell.

I saw Dr. Abell in 1995 and in 1998 had my gastric stomach stimulator placed. It got me off of a feeding tube after almost two and half years. It was truly a miracle moment for me. I met and saw many patients that were just like me! Dr. Abell was caring and actually listened to me. I ended up having a partial colectomy by Dr. Lahr in 2000 to fix the lower half. Both of these doctors were sent by God to help me and others like me. I truly believe that ! I am now 45 yrs old and have had a total of 45 stomach surgeries. I feel like I should have a zipper put in my stomach!!

Over the years I have struggled but nothing compared to hearing my daughter and son both had it. I felt like the breath was knocked out of my body each time. Raven was diagnosed at 12 and is now 22. She has had pacer surgery and a partial colectomy all by age 14. My son is 25 and is seeing Dr. Abell soon about a pacer. We all have GP from another rare unnamed disease that we all share. A mutation in our Chromosome ten that is being studied by Dr. Abell and Doctors in Sweden.

Now is the time to keep pushing awareness and advocating for research dollars. I, my Gp sisters and brothers, have been screaming for help for anyone who would care to listen. We have a difficult time getting sponsors or people to sign petitions or bills such as #HR2311 that would help those of us starving to death in a room full of food. We need to talk about what it's like to go to Christmas dinner or Thanksgiving and not be able to eat. Sometimes we can't go at all because the smell of food will make us sick. We can't go to restaurants and socialize. We can't go to the movies because many of us have to be near a restroom or we might vomit on someone accidentally. Many days we are incapacitated with pain from rotten food in our bellies. Some days we are constipated and in pain. We are lucky to have any good days at all. 

Gastroparesis effects our relationships and friendships. Do people not understand that it is like having the flu 365 days of the year??  We are alienated and left alone to a monster of a disease with no cure and little research. It feels like a rat inside of my tummy and days with severe pain. Gastroparesis is not an illness that can be tied up with a pretty little bow. There are many diagnosis that come with it. I have lost MANY friends to this illness. That's why I have been advocating since 1995. We are seeing change but we MUST raise our voices as one. We must never be afraid to show the true face of GP. We deserve help and an #ALS moment for our cure. I am praying you have compassion towards our community and that many will #TakeABite4Gp for those of us who can't!

​Stacy ~



Will you consider joining Stacy's group at:  My GP Monster

​Join the Take a Bite 4 GP campaign Facebook group: Take A Bite 4 GP