Life is full of experiences.
The past few years I have not had the energy or opportunity to live an adventurous life. My health journey has left me reflecting upon time taken for granted. Now as years and moments pass by, I realize that I dream to return to being adventurous. I want to enjoy life. I want to live in the moment. I'm tired of being told that I CAN'T do things. I'm tired of passively watching time disappear. I'm tired of being discouraged or constantly reminded of my limitations.
In these thoughts, I've decided to share my TOP 3 BUCKET LIST. I believe that all of them are in my realm of possibilities, or at least not completely impossible, IF I could just find someone that's willing to help me LIVE and of coarse have some improvements in my health. I accept that I would probably be required to spend weeks recovering from any one of these adventures and that the amount of time and energy devoted to any of the activities may be extremely limited. But wouldn't it be so worth it? Isn't that what life is about?
So what does my bucket list look like? Just take a look.
It would be an absolute dream come true and an unexplainable experience if I had the opportunity to spend time with Martin Truex Jr and Sherry Pollex. I admit that I am a huge fan for them on the racetrack, have been huge fan of his for many years beginning when he used to drive in the Busch series for Dale Jr. However, I have become inspired by them as people even more. Since Sherry's cancer diagnosis, their love for one another, their love for making a difference in the lives of others (especially children), as well as their NEVER GIVE UP mentality is so inspiring. Like my friends and me, Sherry and Martin Truex, Jr did not just sit back, grieve, and give up on life when times became difficult. They used the opportunity to raise awareness. They found strength in sharing their story. Whether it be on the track with near wins or the stress of chemo, they stood strong, never gave up, and are now able to bask in the glory of their rewards. Cancer free and a Coca-Cola 600 win! Yeah baby! I would love the opportunity to spend time with this amazing couple. Riding shotgun for a few laps, full speed, would without a doubt be a memorable and exhilarating addition as well!
Horseback Riding at Beach
I envision a nice relaxing time exploring the beach on horseback. Calm strolls along the shoreline and sprints across the sand. I would love to steal a small glimpse into Heaven while taking in the breathtaking beauty of a gorgeous sunset. Being one with nature. How romantic and awe inspiring it would be!
Water Sport Adventure day
This one is quite a stretch, I know. Health wise, this one would be the hardest to meet. But we never know what the future holds, right? Regardless it still finds it's way on my bucket list.
I honestly don't have a preference of where, but while there I would like to enjoy a sunset in a Hot Air Balloon floating over the majestic sea. Reliving my teenage memories of Jet Skiing would be awesome. But my number 1 action packed adventure would include FLY BOARDING! I don't know why I am so intrigued to try Flyboarding, but it definitely peaks my curiosity and captures the adventurous side that's hidden inside me.
I am more than a robot!
I am more than a machine!
I'm not a superhero.
I may be surrounded with beeps and tubes, but I still possess the ability to be something special.
I will FIGHT for LIFE.
I can no longer sit back and passively watch life pass me by.
I can no longer wait for others to solve my problems.
I have made so many sacrifices through the years.
Now it's time for ME.
It's time to grab hold to my strengths and use them to improve my outlook for life.
It's time to stand up for what I NEED and WANT in LIFE.
Sometimes there's just not much you can say. Times get tough, body and mind become exhausted, circumstances that you may or may not be able to control start to overwhelm your spirit. So what can you do?
At least that is my current goal!
I'm fighting to regain my positivity. I'm holding on tightly to my faith and belief that there is something more. It's hard! Living with chronic illness is chaotic. Life becomes crazy. Quite honestly, it wears me down. Horrible symptoms sometimes send me in a whirlwind, plummeting me into dark shadows. I become saddened as I watch friends and peers that are literally starving to death because the medical field can't figure out how to help us. I become frustrated when we can't gain the support we need for more research and awareness. (Something as simple as signing a petition for Congress to support Bill HR 2311, which would provide more funding for digestive motility disorders.) I am heartbroken when I learn of deaths that could have been prevented if families, friends, and medical teams could have just shown empathy, believed their struggles, and cared enough to try and help. I become angry when I learn of more deaths in our health community as a result of being unable to receive proper healthcare, nutrition, or intervention due to the lack of knowledge or desire to understand our health needs.
The emotions can become a tangled mess that drags me down, tears at my heart, and even holds me prisoner. Leaving me with the only things, most likely the most important things I can do.
JUST BREATHE and TRUST that GOD has control and a plan that will make all of my struggles meaningful and worthwhile!
I feel certain that God has his reasons. I have learned so much more about myself and the world as a result of my health journey. My relationships with God and family have become much deeper. I have witnessed times of strength behind my feeding tube and ileostomy. But I have also discovered some of my weaknesses.
I know that here are still lessons on Earth here for me to learn.
There is love for me to share and experience.
I can't give up now! Instead I have to press forward and
JUST BREATHE while I attempt to JUST BE whatever God intends for me to be.
"Breathe" by Jonny Diaz
I'm not sure where to begin today. My goal is to write a letter to myself. Specifically a letter from my victorious warrior to the me that feels completely defeated. This task seems so impossible at the current time, as my inner warrior is currently missing, hidden, or being held captive. In order to discover what positive message my warrior would say in response to me feeling defeated, I need to first see why I feel the way I do. What's causing me to feel defeated? Why now?
Presently, I am aware that I have fears of dismissal, fears of losing medical support, and fears of being incorrectly labeled. Though for the most part I have no reason based on the care I've received thus far, I hear about these situations ALL THE TIME from others. I don't want to be looked down upon. I don't want to be considered emotionally weak, even if I may be at times, because I don't want to lose respect from my medical team or family. I don't want to be referred to as a "robot" or "artificial", even if I am currently dependent on a feeding tube, PORT, and ileostomy. I don't want to be given up on or have no more explanations or options available that can help me feel better, even if I feel like giving up myself. I'm scared of being hospitalized again, which leaves me walking on eggshells about when or even if I should reach out for help. If I do, how much should I actually say to inform them of my reality without hindering my healthcare or landing me back in the hospital? I'm fearful of having no medical support, fearful that eventually they will no longer be willing to help me improve my health. To be perfectly honest, avoidance of these situations and fears are so much easier, even if they do carry consequences along with them.
I am defeated because my energy is so depleted, sleep and rest no longer leaving me feeling refreshed. I have lack of control for my nausea and fatigue, though IV fluids are helping. I honestly do want to give up, or at least not fight, when I am treading water during my most difficult times, exhausted, weak, & fatigued physically and mentally. During these trying times I change from being strong, positive, hopeful and encouraged to passive, discouraged, and even hopeless. Crawling or escaping out of these trenches seem so impossible. Sometimes I feel as though I am stuck or hidden in a foreign body. I am broken and embarrassed. I feel like I have fought so long and so hard, trying with all I have, pushing myself to various levels of discomfort and suffering, just to give my body a chance. I do my absolute best to follow all medical advice in hopes that things may change or improve, at least a little. But I still have doubters, damn I'm not going to lie, I have begun doubting my own self. These "exercises" , these attempts of trying, seem to do more harm than good sometimes. So what's the point of bothering with any of it anymore? Yes, I do want to quit, give up, or disappear during these hardships. I've truly considered when & how to quit in a way that is not too harsh on my family or myself. Deep down, I know that is not what I need to do. Deep down, I do not believe that I would ever do anything to intentionally harm myself. Most likely I would just completely let things be, quit communicating about my illness, and give up trying to find answers or relief.
I know it's not healthy, but I do sometimes wonder why has everything I worked so hard for disappeared? Where has the powerful and positive me gone? How can I or will I ever get any of it back? Will I gain enough strength, patience, and better health to be able to successfully return to teaching one day? I can't possibly be the teacher that I pride myself in under these current conditions. So yes, that adds to my defeat. The planning would be tiring enough, but the actual teaching that I love so much would also be unsuccessful if I continue to remain so lethargic - not to mention all my other symptoms. Taking on the responsibility to return to teaching is a very tall order - as I don't have the energy, spunk, patience, or mindset to teach a class of 30 students right now. It would be unfair to my students and colleagues when I get unexpectedly sick or need numerous medical treatments/appointments - requiring me take off of work numerous times each week/month, sometimes without warning or an advance notice. As much as I LOVE teaching, the reality tells me that I may never return to a career I cherished so much. Teaching has always been one of my passions, but if I can't give 100% I would just be a failure to my students and myself. I don't have an option of being a part-time teacher. I could possibly substitute - but even that is too much at the present time. Can you understand how frustrated and defeated this makes me feel?
I'm defeated because even though I have been attempting everything I can possibly do to improve, I keep hitting roadblocks. I am so confused and lost about what is in my personal best interest. I don't know the right words to describe exactly what I'm feeling, as there's a mixture of emotions (good and bad), so I'll just leave it at I'm defeated and am having trouble allowing my "warrior" side to be heard, especially during moments when I need her the most.
So how would my "warrior" self handle things?
As a warrior, I would expect to be able to recognize my willingness to be transparent in order to help others in similar battles. Writing and sharing my personal health journey on various platforms, including my blog, takes a lot of courage. In an attempt to spread awareness and let others know that they are not alone, I've opened up my heart and soul for anyone and everyone that wants to better understand my life with illness. This has proven to be therapeutically awakening for me. I have taken risks in allowing others to see my inner thoughts and personal struggles. Writing has helped me in so many ways, yet sharing it, has admittedly been empowering and hopefully inspirational for some.
The warrior in me would see how far I've come in creating a medical team that consists of compassionate doctors and a Home Health nurse, all of whom have great communication skills, display empathy, and truly appear to be concerned and care about my well-being. Wow, that's a victory for sure!
The warrior in me would emphasize the amazing family support I have and my advocacy efforts. It would question why I'm so disappointed in myself, why I'm so critical of myself, and why I'm letting a couple of bad medical experiences haunt me and hinder me from reaching out to the medical field. If I trust my doctors, then why do I still hesitate to ask them for help when I need it?
My warrior self would remind me of my determined and competitive side, which seems to be harder and harder to fine. The side of me that would never give up or quit, the side of me that still wants to make a difference, the side of me that believes in possibilities and chases after her dreams. The side of me that was tough and would never let someone else's judgements or actions deter me from what's important or hinder me from pressing forward.
My warrior spirit would voice how it's perfectly OK to ask for help from my family, friends, or medical team. It would suggest asking for help earlier, instead of waiting until I become helpless and hopeless. My warrior would attempt to improve my perspective during rough times & provide encouragement to continue as better days are ahead. It would remind me of how much I love my family and how much my family, especially my kids, need me. It would suggest that I search for laughter daily and when I get knocked down to simply breathe and get back up again.
My warrior would admit that I may be struggling or even defeated sometimes, but that I have a 100% success rate of surviving intensely awful moments and obstacles in the past. So what makes the next obstacle or circumstance any different? It would say that acceptance is alright and remind me to be open to trusting others, as many more people and doctors are on my side than against me.
Finally, the warrior in me would repeat that I am never alone and that I am strong enough to overcome any challenge that crosses my path. Reminding me of how I've been able to hold onto faith and have trust that GOD's always here by my side. I have always said that he has his reasons and that one day it will all make sense. God has promised me that!
I am too blessed to just give up or quit. I may not understand it now, I may never completely understand, but God has His reasons and He does not make mistakes. I serve a purpose for being alive. So regardless of how defeated or exhausted I may feel, my inner warrior says
"You've got this! Stay strong, stay faithful and Never Ever Give Up!"
Ever hidden behind a mask of smiles?
Trying to hide the feelings deep inside
Protecting others from your harshest trials,
while internally you feel like should have died?
Daily life with chronic illness is hard,
Plans become difficult to make and keep.
Somehow you learn how to put up your guard,
Learning to smile, when you just want to weep.
Your smiles can also be trained to conceal
Pain, anger, hunger, nausea, and defeat
Protecting your loved ones from the real deal
Fighting rough battles while being discreet.
These very smiles may not tell the whole truth
But share emotions you want to display.
Since honest expression may seem uncouth
and strength's perceived when a smile lights your way.
A mask of smiles may succeed to hide pain
Yet sadly creates emotional strain.
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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