Last year we added a very special component to Glitter Queens Global; our blog.  This blog is dedicated to all warriors.  Here we share our journey's, stories, poetry writings, thoughts, educational material and any information that we can find in hopes to spread awareness and to advocate for all chronic illness(es).  Warrior Wednesday began and a hashtag populated to garner further awareness for debilitating chronic illness(es).  Many have sent in their stories which have been blogged and shared on social media.  Thank  you to all who have walked with us through our journey and continue to do so.  We will begin sharing the stories that remain and hope you will continue to spread awareness with us. 

January quickly came upon us and health seemed to decline. Warrior Wednesday is still present yet the blog postings were something we needed to place on hold.  I found that I needed to reassess our philanthropic efforts and the time spent on social media and truly focus on my physical health.  Although I have not written my story out, I speak about it frequently on social media or during our "LIVE" raffles.  I battle numerous chronic and debilitating conditions to which I spend most of my time either in bed, in pain or in specialists offices.  Gastroparesis has definitely taken a toll on my physical body and my out of state medical trips took precedence these last 8 months yet somehow we managed to pour into the lives of others with the support of a few faithful team members assisting behind the scenes. Our community has been a tremendous support in sending in items for us to place into our raffle baskets.  

Often times, we have to change the way we look at things.  This is why I chose the meme below.  When living with chronic / incurable illness of any kind it is imperative to accept your diagnoses.  When I say the word "accept" I mean the actual diagnosis in medical terminology. You have to research and become an advocate for yourself in the way of your treatment plan first. Then you must become an advocate over your time, space, energy, emotions, physical limitations and what you are able to give and receive.  You really need to reassess your entire life and make realistic adjustments along with expectations for yourself and others.  There is going to be a lot of "letting go" here.  This is a healthy process and one you should cycle through during the course of natural life. It brings a new perspective if you allow it to.  This is when the things we look at change.  This is where it's "okay" if the blog isn't posted every week or every day.  This is where it is "just fine" if I am not on social media every day commenting on every post or responding to every email.  When I say "I' here, I am speaking to the masses.  

I cannot nor have I been able to do those tasks but in spurts for years.  I am disabled. I have let go of this way of life for quite some time as I am physically unable to perform many things; however, I ask this: have other people "allowed" you to do the same? Are they as accepting of you, your boundaries and the limits set without some sort of retaliation, backlash or acting out? Are you accepting of yourself? I would offer this: 1) Set up boundaries in your life for others and yourself and make them known 2) Set up a rule for those who continue to cross boundaries i.e.: How many times is an acceptable practice before exiting from unhealthy relationships or changing the status thereof? 3) Go easy on you and your physical body. On your good days pace yourself so that you don't send yourself into bed for 2-3 days for "over doing it". I recently had this very conversation with a specialist.  We spoke of ways to re-arrange my kitchen and home.  We discussed Body Mechanics and the proper chairs and stools that would fit my personal needs.  4) If you set up a parameter for yourself and do not achieve it or if your overdo it; speak kindly to yourself.  Surround yourself with people who speak affirmations to you and over you.  The last thing we need to steer clear of when living with chronic pain, illness, fatigue and so forth is negative words / emotional wakes spiraling through our lives.  Words are extremely powerful. If you wouldn't say it to a child then do not say it to yourself let alone another.  

Be kind to you.  You deserve it.  Change your perspective often. It keeps life refreshing.  Keep your circle tight and uplifting  It makes this journey lighter.  When you're tired; rest.  

#RevivingtheBlog #Balance #Warrior #Wednesday #Chronicwarrior #CureGp #CureAll
#TogetherweFIGHTTogetherweWIN #liveLoveGrowINSPIRE 

Thank you, Cheryl, for sharing your journey with us.  We are sending you all of our love and support. 

Cheryl's Story:

In November of 1992 I found out that I needed my gallbladder removed. I had it scheduled at the local hospital. The surgery itself was laparoscopic and was supposed to only take two hours, so I and my family were told. Four hours later, my family was told that there were some issues but nothing to worry about and I was told the same story. I wasn't to be released until I had a bowel movement and was walking on my own. Through extreme pain I was forcing myself to walk around the nurses station.

Once at home, mind you only a few days have passed, I was in still severe pain, discomfort along with NO appetite, and experiencing weakness. My grandmother, God rest her soul, had come to see how I was and bring me flowers.  She looked at me with fear in her eyes. My grandmother said right off, "She needs to get to the ER immediately, something isn't right!!". So my mother, who was staying with me during my recovery, whisked my eleven and a half year old son, me and essentials and headed to the Emergency Room.  My surgeon was there that day and came to me.  When he looked at me he looked scared but went on to say "We need to open you up and see what is happening inside of your abdomen." So off we went.

I was under the knife again. Then I remembered bits and pieces, "She has holes in her bile duct but I can't find them". "We're requesting a bed at U of M". Actually U of M was the one demanding that I be rushed there from what some nurses passed along to my family. I remember my dad sitting next to me while I was in and out of consciousness but they kept me out mostly. Then a priest was in my room and my husband asked him to leave because "She's not going to die!!!!!" Next thing I knew I was rushed to U of M. I was still sedated heavily and kept on strong pain medication while they stabilized me over night. My new GI physician, Dr Raper, had come in the next morning with the news of my situation.  Pretty much I was doomed. I asked him about the holes in my bile duct and how it's to be fixed, and how long all the tubes will be in me?? He looks at me sadly and shook his head and said, "Your bile duct doesn't have holes in it. It was completely severed during the original surgery and a two hour surgery took four hours because he couldn't find the end to repair it. It's like a rubber band reaction. I don't understand why you weren't told the truth but this is what will happen next." Then he proceeded to draw me a picture of exactly what he has to do to save my life.

I had many visits from our church and my fathers employer. My best friend was there every day, all day, especially when my husband couldn't be. So, I had to have drainage tubes in my abdomen and a drainage tube that had to stay in 4 months so my organs could heal from the acidity of the bile damage to the organs in my abdomen. My surgeries were not done; I wasn't in the clear. I had to prepare for my reconstructive surgery in March of 93. In between this time I was back and forth to Howell where I lived to U of M in Ann Arbor because the drainage tube in my liver through my ribcage was constantly trying to come out. That was fun! U of M is still a second home to me.

Next came my reconstructive surgery in March, a ten hour surgery which I can only imagine how tedious and daunting for those performing it while my family waited in the waiting room. My best friend walked me down to surgery and was there when they wheeled me out. I miss her so. That's another reason for my depression that I may explain later. Anyway, my doctor sat in my room with me later when I was conscious enough and told me exactly what I was to expect. First he stated that if I survived the next five years that I might be able to try to get pregnant, but he's not sure my body would carry full term. Second, the trauma to my body had caused it to age at least ten years and I WILL FOR SURE DEVELOP HEALTH PROBLEMS earlier than expected. Arthritis, for one and any issues that come with aging along with unknown conditions that at that time could not be determined, of course, and that I wasn't to over do it due to the size of the scar (38 staples). I will develop adhesions and alot of scar tissue. You see they had to open me up to perform this surgery. I have a scar straight across my abdomen. The scar literally looks like I was cut in half. Of course you're thinking "Well, she definitely has a lawsuit!!!!" Well, I had a lawyer that got paid off by the other "screw-up" surgeon is my guess because they both disappeared. Good thing I have all my medical records.

It has been a long, long, long time since I've really told my story but it really hasn't ended because my condition never really was great after. I have been miserable ever since because when you have any surgery on your intestinal tract you're going to have issues. Mine just got worse and worse until my GP was finally diagnosed to explain why I had been in the ER from 2007-2012 due to misdiagnosis and stress triggering episodes so often. I had been extremely sick with pneumonia in 2011 when I made an error at work, a fixable error, but my attendance caused them to decide to terminate me. They tried to deny me unemployment but because they knew I was sick and the judge didn't think my termination was fairly executed, he granted unemployment. Thankfully and quickly.  

I started having anxiety attacks in 1999-2000, during my divorce. Also, during this time my best friend was killed in an accident, she went out one night in August of 2000 and had been drinking so she pulled over on the side of the expressway and witnesses stated her flashers were on but still a Stockhaller semi driver had fallen asleep at the wheel and smashed into her car and ran it into an overpass. He fled the seen and she was killed immediately. For the longest time I blamed myself for not being with her that night. Many reasons to be unhappy but I do try to be happy.  My father was diagnosed with prostate cancer two years ago. Three winters ago he had frozen lung which along with the stress of taking care of my mother with Alzheimer's, doctors say caused the cancer.  He went through the treatments like a trooper and I would stay with mom so it lessened the stress on both of us.  That's when we decided it would be best if I just moved into their house because it is way too big for just the two of them and my dad and I decided we can help each other. I have no income now but we're frugal and spend wisely.

I've been fighting for my SSDI since November of 2011.  Of course I've been denied, but I am not giving up, I wasn't properly diagnosed then. I was finally diagnosed with Gastroparesis in 2014 after many different tests, ending with the GES. I worked all of those years even after what I had gone through. My body, though, has decided enough is enough. Thank you for giving me the opportunity to get my story out. I know so many others have been through alot also and I hope this will help get us the research needed for a cure. I aa nauseated daily at 49 years old.  As we spread awareness and get closer to a cure may our younger ones have a chance to fulfill their goals in life

​#Cure4GP #invisibleillness #GPWarriors

New year, new groove or was it? I woke up this morning with a migraine so intense that I was fully prepared to head to the ER and I began to run through my script, "Why are you here, ma'am?" or "What do you normally use for your migraines?" and the usual "Did you eat anything that may have triggered your migraines?" as if to imply I brought this upon myself and am now wasting their time.  I decided I would battle this out at home because I was in no mood to deal with the condescending glances of yet another physician who may have marked my chart as a potential drug seeker and I most definitly was not subjecting myself to harsh treatment or being berated by someone who has never experienced that pain of a migraine let alone a simple headache.  Thankfully, a twenty-four hour pharmacy was able to find one refill of my migraine medication and by 3 0'clock I was feeling somewhat "human" again. 

During my down time and in between "sleep and awake" I pondered as I often do.  Another new year; another new day with a chronic condition...many chronic conditions! My visual memory log swept over the years gone by and I smiled as I clearly saw a healthier me working out in the gym, gardening and replanting every season with new flowers I would choose carefully to catch the eye of those who drove by our home. Gardening was always a passion and a form of release for me as was playing the piano and singing at our local church.  I was once a prominent figure as a local worship leader and the first grade children's teacher on Wednesday nights.  I worked full time and earned my certication as a Career Coach with a Life Coaching supplement and Work as a Spiritual Path.  I was filled with vibrant life and joy was ever on my lips.  I gave to those in need, volunteered as often as I could, and at one point held the honor of being on the Board of one of the Arts Programs in a city nearby. Life was invigorating and I captured every moment I could while teaching my son to do the same. 

As I curled up in bed,  pleaded  and prayed for this migraine to release, I thought of where I am now and I have to say that I have no regrets with this illness.  This sounds so bizarre laying in a cold dark room, waiting for the migraine medication to take effect, with ice pack number four wrapped around my neck, I know. I slowly flipped through the catalogs of my journey over the last seven or so years and time and time again I was reminded of something I wanted to pass along.  A key that I feel is powerful and has carried me through this journey.  It is gratitude!

I have been asked too many times to count how do I do it? How do I remain so positive while battling all that I do? How do I manage in the midst of not only Gastroparesis but also chronic migraines, neuropathy in my feets and legs, osteoarthritis that riddles most of my body, a hernatied neck with compressed nerve and facet damage, bulging discs in my back and nerve damage there as well, fibromyalgia, pots, reynauds, scoliosis, chronic nausea and fatigue, paralyzed intestines, IBS-CIC, seizures and so on.  We could be here all day! There are hundreds of thousands of people across this world who have illnesses worse than I and I am deeply sorry for their pain. I would not wish pain or illness of any kind upon anyone.  We don't overcome by simply ignoring, avoiding or even saying "I'm going to be positive today" and this will make my life better.  We need a daily system of tools and mechanisms that we practice and then live out. I cannot speak for everyone, but since I have been asked frequently, I felt I would share.  To that, I firmly believe that each one of us can make a difference in the  life of another if only we would be willing to release what we have within us.  What have you been through? What have you conquered? What have you overcome? What piece of wisdom can you pass along to those in need? Think you can't make a difference while being chronically ill? Hear me when I say you have a purpose and a plan. Dig deep (for some perhaps just below the surface) and you have exactly what someone has been looking for to be set free. 

For me, this is how I live my life, before and moreso, with chronic illness:

* Build relationships - Understand that a strong friendship does take time and work on both sides.  I have heard it said that if you have five loyal and true friends during your lifetime then you are exceedingly blessed.  Take the time to cultivate your relationships and be wise with those you allow into your inner circle.  Be honest, open, loyal and trustworthy.  I never make a decision about one of my friends and especially will not treat them differently based upon anyone else's experience either.  I can talk to my friends about anything. They know my heart. True friends will last a lifetime, I guarantee.  

* Steer clear of martyrs or what I call the "chess players" - I am sure we have met one or two over the course of our lives.  These pieces of personal wisdom aren't aimed at any one particular genre of people, mind you.  I once was close to a woman before I became ill and she was quite the "player". Her favorite game was the "one up" game. Her world was not complete unless chaos or conflict was up front and center.  From her house, her job and even her car; everything was a mess.  She, internally, was a mess.  It eventually brought turmoil, chaos and tore the very fabric of our friendship apart. I felt a great release when she parted.  Be mindful of people, places, things, doctors, organizations; even relationships that your children have with others -- anything that isn't bringing you up will eventually bring you down. Take inventory of how you feel before, during and after you are around any of the above mentioned and more. That is a tell tale sign of whether or not change is at hand. Follow your peace. 

* It's not all about positivity! I'm often criticized for being so cheerful, but the fact is I literally was born this way. Even my MBTI (Meyers Briggs) and Enneagram shows I look on the sunny side up. I am an enthusiast; however, that alone won't get you through.  Someone once said, "What you focus on the longest will become the strongest in your life". Powerful words indeed. Even on my worst days, like today. Pain was high, I felt extremely nauseated and weak.  I was not in a position to mentally "go" yet I have the tools and I know how to put them into practice.  I placed my focus on the attitude of gratitude. Chronic illness is horrible. Yes, it is; however, the overwhelming knowledge I have gained about this illness has been priceless.  The friendships I have made are immeasureable. Because I am chronically ill I am right here within these communities sharing my backstory of childhood abuse, trauma, alcholism, drug abuse, divorce, miscarraige, overcoming those things, building my faith and redefining my purpose within this new body realizing that I have an illness..I am not an illness. Meditation, CBT (cognitive behavorial therapy), talk therapy, support groups, close knit friends that I can vent to and who grant wisdom right back in return are all vehicles that allow for a healthy release so we can all thrive each and every day! Couple all of that with a healthy and positive outlook and you are in the best position each and every day. Don't ever let anyone tell you how to live your life. This is about you, not them. 

* Letting go - If you cannot change it then let it go! This is and will be extremely cathartic for many. Letting go applies to every area of our lives. We have all heard the catch phrases: "you can't cry over spilt milk", "you can't unscramble eggs" and so on. Exactly, There is no point in stressing out over things that cannot be changed, especially people and their unhealthy behavior.  If it's not serving you a healthy purpose in your life, then I encourage you to take your power back and release the toxin.  Gain some spoons and do whatever you need to to keep them. During one of our LIVES we discussed the fact that we cannot just cut off or let our family go. True.  What we can let go of is the toxic emotions or negative emotional wakes that are caused by their behavior. You're not a bellhop and you don't have to carry their baggage.  Respectively, if anyone in your life, doctor's office, school, present, past (you get the point) or even on social media is turning you the wrong way then unfollow or just don't engage.  Maybe you have been "friends" for a while or maybe they have helped you out in the past; however, if that help has now become a co-dependency of sorts you may want to re-evaluate that. Is it now a form of silent bullying if you're not going with their flow? Are you constantly being "guilted" into doing things or having conversations that make you uncomfortable?  You don't have to. You're the boss of you! Let it go!

* Balance and Down Time - Take time for you. Take time for your family as well.  Social media will be here when you get back.  I can't always get out due to my health, but I do enjoy music, movies and even just rest. I turn off my sounds, notifications and the ringer on my phone and sleep in until the pain in my body makes me get up. Even one extra hour or two in the morning is just the thing I need to create a healthy head space. Our cells regenerate while we sleep. Place some essential oils in a diffuser, sprinkle them on your pillow, run a warm bath or take a nice hot shower. These are simple things you can do for you that do not require getting dressed or using too many spoons or funds to do. Sometimes some good quality "you" time does a body good. 



There are so many other things that I can share and I will continue to do so as I am able. I would like to hear how you have lived a healthy, stress free life (pre-diagnosis too).  How have you embraced your journey and how do you cope, thrive and lift your spirits each and every day? Every day isn't going to be magnificent. Every day isn't going to be horrendous either.  Our life is filled with four major categories where we can place everything from our own personal thoughts, self talk, physicians, relationships, groups, religious affiliations, exercise routine, diet and so on. They either add, subtract, multiply or divide.  May you be ever encouraged to look at this year and fill up the add and multiply category while stepping farther away from anything that subracts or divides in your life.  

See, it's not always about being positive.  I am grateful for, focus on and place what time and energy I do have into adding and multiplying into the world around me.  Hopefully, I am not only successful but moreso significant in the lives that I am so honored to be a part of. 

Thank you for allowing me to be a part of your journey! I am grateful for YOU!

#attitudeofGratitude #PracticemakestheDailyeasier #IBelieveinYou #IbelieveinME
#Significant #GainingSpoons #Refocus #FindingourPurpose #LivingourDream

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.