I have not had Gastroparesis for my whole life, but have had it long enough to have learned many important lessons. This is my story. This is how I keep going. This is what inspires me.
Ten years ago, I started experiencing symptoms of an unknown condition and continued to have those symptoms for the next 8 months, without knowing why. When I finally received a diagnosis of gastroparesisin April of the following year, I was confused. I had never heard of such a condition. I couldn't pronounce it. I couldn't remember the name. I just remember knowing that my stomach was lazy. A few weeks later, I had learned the name of my condition and that in reality, my stomach wasn't lazy, it was paralyzed. Not only that, I learned that my whole gut appeared to be paralyzed.
Education was an important part of the process to bring to where I am right now. I did research. I tried to figure out why it was happening, how to make it better and what exactly it was. It was difficult explaining it to others and I tried to avoid those awkward conversations.
These days, I know more about the condition. I am able to explain it to others and I am able to live a normal life. However, whenever I mention my condition or attempt to explain it, the most common reaction is that the person has never heard of it before. Gastroparesis is not very well known, yet a very real condition. In fact, people have died due to the malnutrition that takes place in harsh cases.
Ask questions of someone who has this condition. For me, I would rather people ask me questions and not assume they know what works for me or the best things.
There is so much education and research that is needed to help find treatments and cures for this condition and raising awareness is key.
Nostalgia hit as I was driving down the road, after a long day at work. I was exhausted. I hadn't had energy in over a month, due to medical issues, and I was ready to be done with them, though they wanted to stick around. I wanted to run. To exercise. To feel carefree. I wanted things to be "normal", whatever that means. A slower song came on the radio and I mindlessly went to change the radio station. Something stopped me. A song started playing that was so inspirational to me when I was in high school. The rush of memories enveloped me and the words of the song lingered in my mind the rest of the drive home. The song: "I Hope You Dance" by Lee Ann Womack.
(Video from YouTube)
You see, in high school, dancing was pretty much my life. I danced any chance I got. I was a part of a competitive team, my basement became a studio, and sometimes, I was even known to dance through the grocery store. I remembered liking this song the first time I heard it because it what about dancing. Then, I listened to the words and like it even more. Looking back, the trials I went through then seem so small, but I was convinced that dancing through life would ease the burdens that would come. It motivated me to keep going and move forward without fear.
I listened to that song so much, that after a while, I did get a little tired of it. However, hearing it again, I realized how deep the meaning is and how applicable it is right now, especially battling the physical and other issues that have been sent my way.
Here are some of the lyrics:
"I hope you never lose your sense of wonder"
"Always keep the hunger"
"Whenever one door closes, I hope one more opens"
"Promise me that you'll give faith a fighting chance"
"I hope you never fear those mountains in the distance"
"Never settle for the path of least resistance"
"Livin' might mean takin' chances but they're worth takin'"
"Give the heavens above more than just a passing glance and when you get the choice to sit it out or dance. I hope you dance."
"Tell me who wants to look back on their years and wonder where those years have gone"
When battling chronic conditions, and any other condition or sickness, the lines above can be both motivating and uplifting. Shortly after I became sick with gastroparesis (and before knowing what I had), I was told to find things that calmed me. One of those things turned out to be dancing. I was in a situation where I could not dance a ton, but doing simple stretches and barre exercises seem to help me get lost in the movement. It brought peace.
I know that I am no the only who has seen doors close, lost hope, would have rather taken a smoother path or wished for an easier life. I know that the fear of the obstacles ahead can be paralyzing. I know that by not taking chances, we are more apt to have regrets in the future. Our drive, wonder, hunger, and hope will help us to look back and be satisfied knowing that we did our very best.
I understand not everyone dances. I don't believe that is the complete message of this song. If you are not a dancer, insert an uplifting or freeing hobby or talent in the place of the word dance, like hike, run, skip, sing, draw, hunt, etc. The hope is that you take the opportunities that come your way, and embrace them, no matter what challenges and/or difficulties you have.
One last line:
"May you never take one single breath for granted".
Live life to the fullest and make each day the best, despite what you may be facing. You have the choice to sit it out or to dance.
Believe me, if all else fails, Dance (or swim, or bike, or soar)!!!!
This will be a faith-centered post. As my faith is a huge part of who I am, it is bound to come up every now and then.
Today is the birthday of one of my angels. I want to dedicate this post to him, even though I am sure he won't be reading this, but I can guarantee he has been there through all the times that I was struggling, emotionally, physically, or in any other manner. Last year, as I sat in the hospital, going through some tests to figure out what was wrong.As I sat in a long test, that was somewhat painful, he was there. I know, that no matter what, he will always be there for me. He always has and always will be.
As I have struggled to cope with my condition, through the diagnosis, flare-ups, pains, and hard times, I have honestly learned a lot. I had been having. When I feel alone, scared, frustrated, sad, or discouraged, I have learned that there is always someone there. I learned how helpful and necessary angels are, both seen and unseen.
The quote below sums this up:
"God never leaves us alone, never leaves us unaided in the challenges that we face. "[N]or will he, so long as time shall last, or the earth shall stand, or there shall be one man [or woman or child] upon the face thereof to be saved." On occasions, global or personal, we may feel we are distanced from God, shut out from heaven, lost, alone in dark and dreary places. Often enough that distress can be of our own making, but even then the Father of us all is watching and assisting. And always there are those angels who comes and go all around us, seen and unseen, known and unknown, mortal and immortal." ~Jeffrey R. Holland
I know that this is true and that angels. There are people here who can help you whether it be through a smile, a needed talk, an act of service, being there when times are hard, and so much more. These are are examples of seen and known angels. Even more, I know that there are unseen angels, who help and support us in those moments when we need it the most or at those times when we can't make it on our own. I am so grateful for both types of angels in my life.
When I was first diagnosed with Gastroparesis, there was an excitement with finally knowing what was wrong. After the excitement wore off, I knew I was going to need the love and support of others during the coping period and while I tried to make sense of the diagnosis and of what was to come. I am so grateful for the many people who stood by me during those times. I admit, it wasn't always pretty. I remember when I initially hospitalized after an Endoscopy for malnutrition and dehydration. I also underwent some other test. The put me on the cardio floor and I was, by far, the youngest person on the floor. It was the week before Easter, and who wants to spend a holiday in the hospital. When I was first given something of color to eat, my mom decided to take a picture of me with it. Big deal when you green jello. She joked about how the jello stood out because everything, including myself was so gray. I wasn't healthy. It gave me a chuckle.
On the Friday before Easter, one of the nurses came in and told me that if I was still there on Easter (because there was no timeline for my release), they would set up an Easter Egg Hunt for me. It was so kind and nice of them. Here I was, 23 years old, and having nurses wanting to set things like this up for me. They were great! I was release from the hospital the next day and never did get that egg hunt, but was so grateful for the thought.
There were visits, singing telegrams, shoulders to cry on, milkshake get togethers, and so man other things that let me know people were there for me and would stay with me through this trial.
There were so many people who stood by me through all of this. If I named names, I would surely forget someone. However, I truly want to express my gratitude for the people who helped me through: family, friends, medical staffs, employers and coworkers, church leaders, companions, and so many more. I could not have made it through all of this without you.
I wish I could return the favor to each and everyone. There are two songs that have become theme songs for me. I so badly desire to help others through hard times (facing it with compassion, understanding and reality) because of all the help and support I have received.
It is so crazy how true this song is. We will have trials, pains, and hard times. Life is not east, especially when dealing with chronic illnesses. There is always tomorrow and we can always make tomorrow and better day then yesterday or today. We cannot always rely on ourselves. Our strength will not hold up, but with help we can get through. After we cope, we can sing this song. "Lean on Me, when you're not strong. I'll be your friend. I'll help you carry on."
First, I love the video that goes with this song. These children are going through some harsh trials, but look at how happy they are and the joy they are finding. That is a message in and of itself. Next, this expresses my feelings so much. Talk to me. Let me help. It's hard to let your feelings out or to talk about your trials, and I promise I will not turn my back on you because of your trials. I'll be here for you! Third, it is so easy to feel abandoned, alone or forgotten, but I promise you that you are not! There is always someone who cares. If you can't find that someone, remember I am here and I care. These lyrics are so powerful that I wanted to share them with you:
Once again, a sincere thank you to all those who allowed me to lean on them, and still allow me to do so, during hard times. These songs express my promise to you (and anyone who is reading this). I'll stand by you so please lean and call on me when you need a friend or support. We all need love and support!
Waking up this morning was difficult. Within five minutes of my alarm going off, I knew that my stomach was not happy. It didn't want me to move.
I moved anyways.
It was not happy with me. At all.
I pushed forward.
I made it through the work day and came home.
I survived.
I knew that I needed to move, but was unable to find the motivation. That is until a good friend texted me to go walking.
I went.
As we talked about trials and struggles, an amazing thing happened.
I was INSPIRED!
Both of us have been through some rough patches and we talked about things that help us get through.
She shared with me this song:
My mind started going.
HOPE: This word is mentioned nine times (in one form or another) during the song. Whether we feel it or not, there are also people who have hopes for us. These statements are powerful. "I hope you spend your days, but they all add up". "I hope that you don't suffer, but take the pain". What incredible thoughts. Take the pain, but don't become a sufferer. Make the most of every day, every hour, every minute.
GIVE IT ALL: One of my favorite lines is, "The only way you can know is give it all you have.". How many times do we let how we are feeling or what we are going through stop us from doing something. We will only know if we could have done it or done better, if we act. We cannot let hard times stop us from moving forward or living our own hopes and dreams.
LIVE: The chorus is powerful, especially with the story of the young man, in the video above. Are we doing all we can? When we are broken, do we continue living, fighting, pressing forward? Are we making the most of our lives?
No matter what the condition is that we are dealing with, we all have the power and ability to make committing statements.
"If you're happy and you know it clap your hands" (Clap, Clap)
Oh, childhood! Those days were simple ones. You played. You ate. You took naps and it was acceptable, even expected (though not to you, because you wanted to play). You laughed at something funny, cried when you were sad, and clapping your hands meant you were happy. If only it were that easy now.
As you get older, you learn that it is not always acceptable to show how you are truly feeling, nor do you want to show those feelings. You go about life laughing and clapping your hands on the outside, when the inside is crying, or stomping it's feet, or scowling. We are now, more than ever, trying to apply the fake-it-until-you-make-it attitude. This is where we act happy and okay with everything, when we really aren't.
This is no different when faced with chronic issues. You grow and progress each day that you deal with the condition. That does not mean you are always thrilled or even remotely happy about what you are going through. You learn how to get through it or hide the pain because you don't want to be seen as weak, or a complainer, or needy. The strangest part of this is that sometimes, it actually works.
Initially, when I first got sick, before my diagnosis, I was not thrilled with how I felt, the way it affected me, and how extremely difficult it was making my life. However, I kept working, pushing forward and doing everything I could to move forward. After my diagnosis, I was pretty consistent about sticking with the diet (though I strayed a few times) and taking the meds. My attitude was not always the best. That needed to change. I began to fake being happy until I actually felt that way. Now, almost 9 years after the diagnosis, I do not follow the diet as strictly and I take more risks. Some days you just have to splurge. However, I do not have as many fake-it days and have been able to find true happiness, even though I am dealing with something very difficult. Don't get me wrong. I still have my days, weeks, or months when I am not in the make-it mode. Sometimes, I don't realize I am struggling with it, until I begin to question why I am feeling and acting the way I am. It is because I automatically started faking it. I don't believe it is a bad thing (to an extent).
Whatever your condition or issue may be, you will most likely have moments when you are not thrilled with the hand you have been dealt or don't understand why you have to go through the struggles.How you deal with it is really your choice, whether you do it honestly or by faking it. Both can be good. Being honest helps you work through the feelings and get over them. Faking it allows you to move forward and move ahead. There are negative ways to get through these times as well, but those really are not recommended. Find the method that works best for you and move forward.
As great as childhood was and as nice as it was to think clapping your hands truly meant you were happy, growing up has taught us that things are not always that way. Whether we fake it or make it, it is all about our attitude and what works best for you. You can show that by clapping your hands, stomping your feet, shouting hooray, hitting a pillow, etc. The possibilities are endless.
The title says it all, but let's preface this with a story. We all have our own stories in life, and unfortunately, I do not know all of your stories. That means, by sharing a story it will either be made up (which would defeat the purpose of this post) or come from my life.
As many know, health problems have plagued me this year from surgeries to kidney stones, and so many things in between. Going through these difficulties was not my favorite. After resolving these issues, I moved, thinking that life would look up from there because what else could I possibly go through. I was wrong. More trials came and I began to be confused about why all these hard things were happening to me, in my life. Just before Thanksgiving, I was sitting in a class and realized how important it is to be grateful for the hard times. ~ I can see your head turning. Don't worry. I'll explain.~ I was also made aware of the importance of counting your blessings.
It reminded me of a quote:
"Count your blessings and your problems... If your problems outnumber your blessings, count again.... Chances are the things you take for granted were not added up"
Wow! What more can be said. Doing this created awareness, especially when problems seem to overtake life. There is good in every situation. Some situations require more digging and work to find the positive. But the treasure of those far outweighs the good we can easily see, without much effort.
