Who am I? 

Years ago, when I was a young girl in first and second grade, inquiring minds asked me what I dreamed to be when I grew up? Always, my answer was a teacher, an elementary teacher. Yes, I thought about having a second or even third job along with teaching - like being an astronaut, coach, and bus driver as I taught. Crazy isn't it? But I knew, with no doubt in my mind, that I wanted to be a teacher. Scratch that. I knew that I WAS going to be a teacher when I grew up. 

As many young children that dream of being a school teacher, I taught my stuffed animals, baby dolls, friends, and even brother in my make-shift classroom. Worksheets, workbooks, reading books were passed out daily. I graded papers, scolded children, led reading instruction, had students or myself take names on the chalkboard, etc. I KNEW what my passion was and was determined to make my dream a reality. 

Years passed by and my passion for teaching grew stronger and stronger. The more experience I gained from helping in children's church, babysitting and child care classes in high school, the more convinced I was that teaching was my purpose in life. I had everything figured out. My life was going to be grand! (Minus the high income of coarse.)

My college years were no different. I absolutely LOVED teaching at the local daycare when I was not in class. My favorite classes, hands down, were my practicum classes. Being in front of a classroom felt amazing. My life of purpose and helping others had been found. God led me to teaching, I was following the path he laid before me, and life was great!

In the fall of 2000, my dream was achieved! My career as an elementary teacher was beginning! I was going to make a difference in the lives of children and our community. I had a calling and I was going to give my absolute best to be the best possible teacher I could be. When inquiring minds asked what I did for a living, I proudly responded that I was a teacher and I absolutely loved it and my students. I was proud of my accomplishments as well as my students. My students truly became a part of my extended family. 

Looking back on the past 15 years I've given my heart to teaching. Countless hours, priceless memories, wonderful connections, exciting experiences, and unforgettable teaching moments flood my memory. I know that I'm not perfect, God knows there are many lessons learned, I only pray that I have made an impact and difference in the lives of at least some of my students! They definitely made a difference in mine.

Today, Fall 2015, I have begun to close a part of that chapter of my life. My daughters and I went to "MY" classroom this morning to remove my personal items and materials. For the first time in my entire life, I am having to face the world of uncertainty? Yes, I am still employed with the school system while on medical leave, but I no longer have my position I loved so much. I know that when I'm better, I will have a position in the school system, but returning to my current school is not for certain. I can't honestly say which school I will be assigned to or what grade I will be responsible for. Just that I have a position being saved for me in our school district. Uncertainty, an awful feeling of uncertainty. My words can not describe this feeling accurately. I am hoping that one day, a sequel to my first 15 years in the classroom will be written. Until then.........................

So what do I say now to inquiring minds? How do I answer what I am now? Just saying that I am a teacher on medical leave doesn't answer the question does it? I don't have a title anymore. I'm just here. 

But then again, through my health journey, God has blessed me with some outstanding friends online. These friends have helped me through some extremely difficult days. When I start to feel like giving up, or hopeless, they always jump right in to motivate and bring me up emotionally. I am so very blessed to be connected with them, as they know and understand my battle with Gastroparesis better than anyone else I know, as they are living with it as well. These new friends are great encouragers and the strongest, bravest, kindest people I've ever known. If it weren't for God, my family, and my friends met through Gastroparesis, I honestly don't know where I would be today.

So the question is.... Who am I today?
I am a teacher! 

I am a teacher on medical leave waiting until my body heals and God sends me back to the classroom.

I am a teacher, educating others about Gastroparesis and Feeding Tubes, not only to help those diagnosed, but also to help spread public awareness in an effort to increase understanding, funding, research, and hopefully better treatment options or, better yet, a cure. 

I am a mother to 3 wonderful children, the most amazing blessings in my life.

I am ME!

Not much to say today. 
Gastroparesis has been a major struggle over the past few weeks and months (though battling for over 2 years). Instead of improving, I feel as though I'm fading away. But thanks to my amazing family, a few supportive friends, and GOD - I keep moving forward. 

After hearing this song, it instantly became one of my favorite, most played, comfort and inspirational song. The lyrics really hit home. I hope it does with you as well.

My goal, as the lyrics say, is to "dance a little, laugh a little, and hope a little more" with my children!

https://youtu.be/4_zcjxDdZ1s

If you or a loved one is battling with a chronic illness, then most likely you are familiar with the SPOON THEORY. Basically, for those that aren't familiar, the spoons are used to represent the energy that we have and how it's spent. Each day, those with illness, awake with a set number of spoons. Each activity, even down to putting on clothes or taking a shower, take away our "spoons." When we are out of spoons, we have no energy left and are at the point of collapsing. Therefore, we have to choose how we use our spoons carefully, saving them up at times for special events or getting extra rest to replace with new ones. Which is why we sometimes refer to our selves as "Spoonies". You can read the originally article about the Spoonie Theory at 
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Just recently I read a blog from a fellow "Spoonie" about how a better metaphor for us very well may be a rechargeable battery. In her description, Kymberly described how healthy batteries and recharge capability (healthy bodies) compare to older batteries (less healthy bodies). It goes without saying, that newer healthier bodies hold charge better and are recharged easier, whereas "used" batteries hold charge for a shorter amount of time and when recharged with rest, still may not be fully recharged. The point I liked most from her post, though, was that how well we hold up a charge during the day not only depends on the rest we've received but on what uses up our energy during the day. A day with few symptoms, though may still be less energized than healthy body, uses up far less battery strength than a day fighting constant severe symptoms. Too many great analogies in her blog, so I recommend you read it for yourself at 
http://stillpain.com/old-battery-theory-chronic-illness/

Regardless of which article or comparison you like best, the simple truth is that we know our bodies better than anyone else! As difficult as it is, we have to find a way to listen to our bodies and provide it with whatever it needs to keep moving forward. I agree that it's much easier to say than do. 

Honestly, listening to my body and it's needs has been a very difficult battle for me recently. I swear my body must speak a foreign language that my mind just doesn't comprehend. But I'll keep trying until I eventually figure it out.

Today my frustration toward my health and healthcare is building. While I am thankful & blessed that I have been cleared and released from the Cardiologist and Neurologist, I still sit with the continued Gastroparesis and other Digestive System issues that seem to keep increasing in intensity! 

I am able to handle less and less tube feeds - averaging 1 can a day if I'm lucky. This is the least amount of formula that I've been able to receive since having my GJ feeding tube placed in May 2013.

Orally, I am also receiving less than I have in the past, averaging less than 1 cup of liquid a day w/ an occasional popsicle or cracker. All in all, my complete caloric intake is still around the 500 cals/day mark, less on days when symptoms are worse than the "normal." 

What I just can't seem to get people to understand, including my husband, is the more I try to push orally or via the tube the worse I feel. The nausea and pain spikes, keeping me under a heating pad or in a hot tub to find some relief. If I go all day and run no feeds and have no oral intake, I feel much better with exception of the fatigue and dizzy spells keeping me down from lack of nutrients.

I am so confused and actually becoming so frustrated with my self and my health. My family (especially parents) keep trying to persuade me to get IV fluids due to my lack of fluids. Some of my medical providers have told me that I am dehydrated, that my muscle cramping, lightheaded/dizzy spells, and fatigue are most likely a result of dehydration and/or malnutrition. I completely agree with them. Unfortunately, and this is what gets me, no one can offer a solution. I hear, "push more fluids" but to what point do we say, enough is enough, and decide to create a true action plan that may actually work, because me "pushing fluids" is not successful right now. 

I admit I don't want to become dependent on IV fluids, or as one Dr said "don't want to become a machine, already have a feeding tube", but if IV fluids help me feel better & allow me to actually function again, isn't it worth it?  Wouldn't it be worth a shot to see the IV fluids would knock away my lightheaded/dizzy spells, help energize me enough to stay on my feet, and provide me enough bodily fluid to help my intestines move things along, which in return would allow more formula to be taken in, which will then allow more strength for living? 

I don't know. I don't have a medical degree and definitely don't fully understand my body. All I know is that I am not getting better, if anything I'm slowly sliding downhill and in the wrong direction. I want and need to feel better now! Eventually, I will have no choice but to say enough is enough, I'm done! I would much rather my medical team and I to figure it out before then. 

Dear Kids,

After hearing about the recent deaths in the Gastroparesis community, I wanted to take a moment today to let you know how much I truly love you! You are my absolute most remarkable blessings from God here on Earth. The only blessing greater, is that life will continue in Heaven with Him after we pass. Which means, no matter what happens, as long as you have God in your Heart and accept him as your Savior, we will all be reunited again after death. We never know when God will call us home, we must always be prepared. I need to know that you know how much you mean to me.

As I think about each of you, my heart is filled with love and compassion. All 3 of you are amazing kids that are developing into amazing young adults right before my eyes. It truly seems like just yesterday, when I was carrying you on my hip or shoulders, holding your hand during a stroll, and holding you in my arms as you slept. I don't know where the time went, it passed so fast, but I treasure all of our memories together.

Now, as you are, I value our time together. I apologize for not being as active as I once was. Please don't think for a second that I skip out on activities because I don't want to be with you. That is far from the truth. I hope you recognize that I choose carefully what to do or not do, so that I have more time with you in the long run and so that I don't spoil your fun. Even if I miss out on exciting adventures, hearing them from you make me so happy. The smiles on each of your faces, the sound of your laughter, the sparkle in your eyes, and the love behind your hugs and "I Love You's" are what keep me going each and every day.

I admit I currently spend a lot of time on the computer. Once again, it's not to avoid you. (In fact, I try to use the computer when your playing video games, swimming, visiting PaPa or Poochie, or just watching TV). My time on the computer is spent trying to assist others, as well as myself, find better health. I'm busy in support groups assisting others, including me, stay positive and strong while waiting on better treatment options to be created. On Twitter, I'm making friends and connections around the world in hopes of making others aware of Gastroparesis so maybe a cure or better treatment can be found sooner. Additionally, being on the computer helps me find myself, which is sometimes lost while battling my symptoms, as well as keeping me up to date about what new treatments arise and their effectiveness. The friendships formed online offer me an opportunity to reach out for support, talk about my downfalls, discuss Gastroparesis and it's impact on our life. They provide me a chance to emotionally be open and honest about life, so that I don't burden you with my innermost thoughts and concerns. The computer helps me hold onto hope that one day I'll feel better so I can LIVE life, once again, by your side. You guys may not realize it, but you are my driving force. You are the rocks that keep me grounded and the reason I will NOT and can NOT give up!!

I know sometimes that you are sad or scared, especially when I am feeling my worst or when ER visits are necessary. And that's okay. To be perfectly honest, I am also scared about the uncertainty of this disease and where it will lead me. I try my best to hide that part of me. I try my best to hide how horrible I feel, as seeing the hurt and helplessness in your eyes is heartbreaking. I know and understand how bad you want me to feel better. The special hugs, the snuggles, the text messages, our conversations, your love, all truly do help me! Words can't express just how important and special you are to me. We WILL get through this. I promise that I will continue to fight as hard as I can, regardless of what lies ahead of me. I will faithfully follow God's path and purpose, knowing that you are here by my side keeping me focused on what's most important.

You may hear people say that I am a strong, courageous, and brave fighter and advocate. Yes, I fight hard. I fight with all my might. But I am only strong enough and brave enough because of the three of you and God. You mean the world to me. I don't know where I would be without you and pray that I'll never find out. Your love, your smiles, and your future are what encourage me to keep striving for answers, research, awareness, and better health. You 3 are my everything. I love you so very very much! 

I apologize for not being the mom you always wanted. I'm sorry for missing out on some of the vacations and events that you wanted me at. But please know that I was and will always be with you in spirit. I do the absolute best that I physically can. I try to be the best mom that I can and need to be. I'm not always perfect and I will make mistakes, but I'm ALWAYS here for you. I pray that you realize that. This has not been and likely will not be an easy journey, but remember how blessed we are. We have each other!

You 3 are my greatest accomplishments and blessings! You make me extremely proud! I am and will forever be your greatest, number 1 fan!

Love you always and always.

Mom

At a loss of words
Don't know what to say.
Heart is so heavy
From hearing of another loss today.

Just don't understand
How many deaths must we bear?
Until we can finally, finally
Find enough people to care.

Young lives lost early
are always very sad.
Yet 3, yes 3 lost is one week
actually makes me very mad!

We have to keep fighting
We have no other choice.
Someone HAS to decide to help us
As we continue sharing our Gastroparesis voice.

Why me? The better question, why NOT me?

I have been through a huge range of emotions over the past few years, thanks to my journey with Gastroparesis. However, through it all, I can honestly say that I have never been angry about being sick - just angry about the lack of knowledge, resources, and unwillingness in helping spread awareness in our fight for a cure or at least better treatment options. 

God places a path before us, which we must trust and follow. There is a reason to his plan. I admit, I am still trying to figure out what exactly he has in store for me. But can't help but believe that he wants me to TEACH not only the students I've taught in the past 15 years, but the public and even medical providers about Gastroparesis. 

Could that be my calling?
Could my purpose be to continue helping others during their health journeys while also raising awareness for Gastroparesis and maybe even other rare illnesses/diseases. 

I don't know.
All I know right now is that I will continue to do what I can to help others and myself regain better health and better healthcare.

Over the past few weeks I have been looking closely at my values. 
What do I value most? 
How can I feel valued? 
Which values should I fight for, even if other values are neglected as a result?
If I were to grade my day based on values, what would it be?

I can't even begin to explain the thought process and answers to these questions. The things I value most: God & Family easily!

However, it's not that simple. 

I still have to hold value for Health, as without improving my health, I can't function as a mom. In order to improve my health I have to improve my nutrition intake - yet the more I try the worse I feel, thus decreasing ability to be the "mom" I want and need to be. 

Thus I see my doctors/specialists regularly. I attend each appointment in hopes of discovering a treatment that will help. I willingly try any suggestions and medicines. Currently my medicines are a Catch 22, help some symptoms while making other worse. Yet, without them I feel awful as well. The appointments, themselves, are draining to me; sometimes increasing dreadful feeling or if not already in a flare, a new flare begins. The following day I am so fatigued that I must rest. Which, yet again drives me further away from being the mom I want to be.

Advocating has helped me educate the public about my illness, in hopes of finding better treatment options or a cure so that my health can improve and lead to being a more actively engaged mom and person. Letting go of my fears and literally sharing my health journey with the world, has linked me to some amazing people. Some with gastroparesis like me. Others with chronic illnesses such as crohns, colitis, cancer, fibro, cystic fibrosis, arthritis, etc that appreciate the importance of awareness while also understanding how emotionally and physically draining life can be day after day. From these personal connections and even friendships I gain inspiration to continue fighting, yet also share tears when things are rough.

As a part of advocating, I've also shared my health journey as well as general gastroparesis information with medical providers, media outlets, medical researchers, etc via Twitter. Though I personally have no desire to let others in on my personal life - I have and will continue to in order to hopefully improve awareness and help find a cure to help others, including myself. They need to know that patients are real people. They need to see the personal side of illnesses and gain knowledge of illnesses that are not commonly known, so they too can help us reach our goal of being healed and returning to life.

Online Support groups have also become important as they offer me an opportunity to learn more about my illness, new treatment options to consider, outlet to share frustrations, and help others along the way. Yet, sadness and despair when members are struggling and even sometimes pass away.

Advocating and participating in online groups takes time away from family and uses up very precious energy. Resting, improves energy, but takes time away from family and even causes me to miss out on fun activities. Joining in activities with my family, puts me at risk for increasing dehydration, malnutrition, fatigue, and other symptoms. So I have to be careful and choose wisely. Running feeds or intaking oral nutrition, increases my pain and nausea, which keeps me from actively living.

So in this web of values, how can I measure one when all are impacted with every move I take?
Which values do I fight the hardest for, when other values are always compromised?

God and Family may be my top priorities and values, yet how can I achieve them without health, which for gastroparesis, requires advocating, connections, drs appointments, awareness, and new treatment options?

I would love an easy answer - yet, unfortunately, I don't think there is one in this case.

So what shall I do?

I will strive to live in the moment. 
Make choices as they come; sometimes on the side of safety, other times taking chances. 

I'll face consequences the best I can, while trying to listen to my body, yet also attempting to "LIVE" with my family and not just alongside them. Knowing that God is always with me. 

Whatever happens, happens. Yet, I'll always try to improve things for my new found friends (GPers & beyond) as well as myself, by raising our voices together for better health care and treatments.

I am not alone! I'm never giving up! I am Me! I'm in God's hands and will continue to trustingly follow the path he sets before me.

I can't place a value on my life, so why try to place a value on my values?