Yet another death in our Gastroparesis Community. She was young and should have been full of life, only 30 years old. I did not have the pleasure of knowing her, yet many of my friends did. So heartbreaking and morale sinking. We keep fighting every single day to bring awareness to our disease, no matter how  bad we feel, we still keep fighting. It's scary. I know that Gastroparesis doesn't kill by itself; however complications such as malnutrition, dehydration, organ failure, line/tube infections, etc  are created from Gastroparesis. I can't help but feel defeated.

Yet another medical provider telling me that I am not getting enough nutrition, too dehydrated, and lack of energy needs to be corrected. She believes that I need IVs to "reboot" my system. I personally don't have the energy to sit in an ER dept for HOURS face the reality that they will not want to give me fluids. I see my PCP next week, so we shall see if fluids are suggested/offered or if I continue on the "wait and see" approach a little longer.

Yet another medication issue. Finding a pharmacy that could compound it was extremely difficult. Finally found a place about 45 min away from my house and can pick it up later this week. That's ridiculous! Driving 45 min to pick up a prescription and 45 min back home.

Yet another day of fighting my symptoms, fighting with every ounce of strength, just to survive the day and return to bed in hopes of rejuvination.

Those of you that have read my previous blogs are aware that I try to keep a positive outlook. While sharing my honest experiences and thoughts, usually I can add a spin to find the "silver linings." Today is not that case. Today I dare you to take an inside look at  Gastroparesis and the pain it creates in ones'  life. 

Gastroparesis is an individualized destructive disease. Everyone is different, yet the pain is still there. My journey with Gastroparesis began in mid-Feb 2013 and will continue until someone is able to come up with a cure or at least better treatment options. Instead of writing about my entire journey, I am going to break it down to the different kids of pain that I have to endure on  a daily basis. Please note, words can not draw the most accurate image. Everyone's pain is different, some better managed than others. Some similar to mine. And yes, some much more severe than mine. The passage will hopefully give you an idea of how disabling Gastroparesis pain can be. 

Upper Abdominal Pain
For me, this pain is an unbearable hard to breathe nuisance. It occurs whenever I try to become brave and eat or drink "real" food. Something as simple as a couple crackers, cup of delicious hot chocolate, a slice of grilled toast, or a bite of scrumptious cheesecake can send me into almost immediate pain. This isn't a "normal" little stomachache that last a few minutes, or even an hour, and then goes away. A flare can last continuously for days, sometimes even weeks, without a break. The pain is horrendous, keeping me unable to function. Trying to hold tears back while also attempting coping strategies. And as if the pain isn't horrible enough, bloating and nausea usually accompanies it hand in hand. Eating something as simple as ONE banana can make me spend days feeling like I have majorly overeaten at a buffet and contracted food poisoning. Only the pain and nausea doesn't pass anywhere as quickly and was only over a small amount of food or liquid. Some of my friends also have distention, luckily  I don't. They can eat a few bites of food and their stomach will literally expand. One minute they are thin, the next they literally look and feel like they are 9 months pregnant. 

Lower Abdominal Pain
The pain in this region is also continuous and accompanied by bloating and intense nausea. I have no control over pain in this region. It doesn't matter if I choose to eat or drink a little something or not. I seem to constantly have consistent pain here. It can be a nagging dull pain at times to intense fetal position pain at others. If I had to rate it on a number scale, I would say that I am always at least a level 4 on the pain scale, with varying degrees higher as the day goes on. I am unable to receive adequate nutrition orally due to my upper abdominal pain issues. As a result, I am dependent on a GJ feeding tube. (I will describe my feeding tube in the next section.) Through-out the day, I am required to run formula. Running the formula, creates more lower abdominal and intestinal discomfort and pain. Usually, I can handle the pain of this region first thing in the morning. However, as the day progresses so does my pain. Unfortunately, I don't have a successful remedy. The nausea medication and intestinal cramping medication that I use throughout the day, (Both are at their highest dosage avail and can only be taken every 6 hours) only last for about 3 to 4 hours. While they do offer some short-term help, they create new issues and later pain in the form of severe constipation. My doctors and I are still working together to figure out the best medicine regimen, weeding out those whose benefits don't outweigh the benefits. Sometimes, I am lucky and suffer the pain in the lower abdominal region solely on it's own, but other times I have to suffer the pain of both the upper and lower region together, with relentless nausea regardless.

Feeding Tube Pain
I don't know how many of you are aware of feeding tubes. I have a GJ feeding tube. The G portion enters my stomach. If my nausea and/or bloating is really bad, sometimes I can get lucky and "vent" my stomach. This means I can allow the contents of my stomach to run out of the tube into a cup or the sink. I have been instructed to be very careful with this, as it can cause electrolyte problems. I resort to venting only when my nausea has me at the point of vomiting and/or heaving. The J portion of my tube, enters my small intestines. This is where the formula that is pumped in my body goes. Currently, I am running my formula at 30-35 ml/hour for about 9-10 hours a day. This is my sole nutrition. I am unable to run it any faster or longer, as the pain becomes to awful and unbearable. Besides the intestinal pain and cramping. I also have sporadic pain around my tube. The stoma (the hole under my breastbone for the feeding tube) sometimes becomes extremely sensitive and irritated. I have to be careful to ensure that it doesn't become infected. (I have heard horror stories about the pain and life-threatening nature of infections around and/or in the tube site.) The stoma pain is rough, but thankfully I can usually find measures to improve the cause of pain and shorten the duration of time. Every 3 months, unless sooner due to unexpected issue, I have to have my feeding tube replaced by Intervention Radiology. The procedure itself isn't too bad, I have conscious sedation, though I am usually sore for a day or two.

All Over Pain
As a result of receiving inadequate nutrition and fluids, even with a feeding tube, I stay dehydrated and occasionally have vitamin deficiencies. Therefore, I must deal with all over muscle pain, cramps, and fatigue. Even though I have a regular sleep pattern, I do not always wake up refreshed. I toss and turn during the night on most nights, due to the unwanted nausea and abdominal pain. The dehydration also puts a wear on my body. It makes me feel very weak, tired, and creates restless arms and legs. It causes additional intestinal issues, as well, such as constipation and possible colonic inertia. Both of which add to even more crampiness and razor blade pain with defecation. Additionally, the dehydration causes concentration issues, lightheaded/dizzy spells, and heart palpitations. 

Emotional Pain
I can't even begin to make you understand the emotional pain that I endure as a mother, patient, and friend thanks to Gastroparesis. It's truly too difficulty to explain, but I will try my best. 

As a mother, I always felt like I had to be strong for my children. I still do, though my vision of what strong means has been altered. I used to believe that being strong meant showing my kids that everything was under control. However, having gastroparesis has proven to me that being a strong mother means showing your kids that things are not always under control. Sometimes we have to be strong enough to ask for help. We have to be strong enough to accept help from others. I have realized, and hope my kids have as well, that strong mothers have unconditional love for their children and will always fight the battles worth fighting, by never ever giving up. Being a mother isn't easy. I worry about my children, it's only natural. It pains me to see them hurt. Unfortunately or not, when I see them hurt, I hurt too. I hurt when I see their disappointment and the tears in their eyes, because they feel helpless from being unable to help me with my physical pain and struggles with gastroparesis. It is so painful to see them create a special magic hug or piece of art to try and help me feel better only to see no change. It's heart-wrenching to see them tell me they understand if I can't make it to a ball game or special event, when I know how important it is to them and how badly I want to be there. I feel emotional pain, sadness, guilt knowing that they themselves are missing out on exciting vacations because I can't handle physically handle them. Painful tears slide down my face as I hurt for the energy and strength to actually play outside with them and create fun life-long memories before their childhood years disappear. It's painful as a mother to realize that before long my kids will be on their own, and be left with memories of me as a gastroparesis patient in pain instead of a mom that actively enjoyed life with them. 

Not only do some of my friends and I suffer from physical and emotional pain brought on as a result of gastroparesis, but we also have to deal with numerouse medical providers. I will not deny, my personal GI and PCP doctors have been and still are phenomenal. (Though a little afraid about who my next PCP will be after mine moves out of state in the next couple of months.) I have been very blessed with having some open, respectful, and knowledgeable physicians. Unfortunately, that is NOT the case for all. I hear complaints every day about the experiences that they have with their doctors. Some many physicians, including some of my ER/Immediate care doctors, just don't "get it." Either they are unfamiliar with what Gastroparesis is, unfamiliar with how to treat it, or unfamiliar with it's debilitating nature. It is not uncommon from someone living with Gastroparesis to be told from their doctor that it's all in their head, that there's nothing wrong, that the pain is not real, that they don't know what else to do, that they have run out of options, or that they simply can't help them. I hear about it EVERY DAY in my support groups online. In my groups I have witnessed the confusion, loneliness, and heartache of not having supportive doctors. I have witnessed and experienced the darkest hours of this disease, the feeling of being alone, being a burden, or being helpless. 

Luckily, I was rescued from those deep waters. God, family, and new online friends rescued me. I know that there is hope. I am in this fight and I will NOT give up! Unfortunately, others are still struggling, still drowning. I do my best to help and I share their pain. I can't describe how difficult and painful it is to hear others talk about struggling to survive, but still can't find a helpful and compassionate doctor. The pain and anguish is an even higher magnitude when kids and babies are the ones struggling with Gastroparesis, yet unable to receive appropriate treatments. 

My heart also aches each and every time I hear of someone that has lost their life to Gastroparesis complications; Many have died from (but not limited to) malnutrition, infections leading to sepsis, organ failure, and even suicide. Why is this? 

Why is Gastroparesis not talked about more? Why are prescriptions that so many need to survive their day to day life, becoming harder and harder to fill? Why are government agencies unable and unwilling to see the patients for who they are behind the prescriptions? Shouldn't doctors and patients (if needed the patient's family) work together to make the best possible medical decisions? These important and life altering decisions should not be made by government agencies or insurance companies that aren't aware of the patient or medical needs.

I am in this fight not only for myself, but also for all adults, children, and babies that have this awful debilitating and painful disease, Gastroparesis. We will fight to exist! We will fight to live! We will fight to be recognized! We will fight for better treatments! We will fight for a cure! Will YOU help us fight? 

GOD is Wonderful! This summer will make 14 years since I became a mother. Being a mother to 2 wonderful children, has been the most amazing blessing. My stepdaughter making her way into our lives, was an unexpected blessing. I love each of them with all of my heart. They were, still are, and will always be the most important part of my life. They keep me going when times are rough. Seeing their faces, witnessing their compassion, and experiencing their love provides me with strength and comfort when I am ready to give up. I am so very honored that GOD chose ME to be THEIR MOTHER.

I never doubted my ability to be a great mother. From a very young age, I knew that I wanted 2 or 3 kids. Since becoming a mom, I have always done my best to teach them how to love others, how to appreciate the little things, and how to be there for family. They are not given everything they want, they do not always get their way, and they are not always perfect. And that is fine because they are well taken care of, have a supportive family, have everything they need (and more), and are loved beyond measure.

Being a part of this family is not always easy, especially since my illness. The kids have seen me in excruciating pain, over the toilet with relentless nausea, unexpected hospital visits/stays, and too tired to lift my head. Gastroparesis is not well liked by the kids or me. For a while, I fought as hard as I could to be "normal". (Hopefully I can regain my status to the "pretend to me normal" status soon.) After my initial diagnosis and the placing of my feeding tube, I tried to continue being the same type of active mother I had always been: cooking, ball practices/games, backyard practices, vacations, etc. 

This past summer, there were days when I was not physically able to be an active participant in their lives. I was tied down to my recliner with my heating pad. Some vacations they took without me. Deep sea fishing and theme park hopping were not on the list of things that I could do. I physically became unable to practice sports in the backyard, became unable to drive, unable to attend their practices, and sometimes even had to miss a game. Eventually, I began feeling as if I was not a good mother. I felt guilty for everything that I was unable to do as their mother.

With God's help, I have come to the realization that I was so wrong. Gastroparesis and it's symptoms may have changed me as a mother, but it could not and would not define me as a mother. True, I can't do everything as I had before, but I am still a great mother. I love my kids, all 3 of them, unconditionally. I am their number 1 fan and supporter. I am ALWAYS here for them emotionally. I am so very proud of them and all of their accomplishments. God has blessed our family in so many ways. We may not always know why certain things happen, but we accept HIS plan for us.Being sick or physically down, doesn't change that.

I admit, motherhood has altered for me. But hasn't it for everyone. My fears and guilt were senseless. I have not become weak, just different. I continue to teach my children how to become strong and independent adults. I continue to teach my children how to love. I continue to teach them what unconditional love between a mother and child looks like. And I continue to teach them about God's love and blessings.  Coincidentally, the very things that made me feel guilty as a result of my illness, have actually been new lessons for my kids. They are now being taught that everything in life is not always perfect, and that's alright. Deeper conversations replace the backyard playing and practice sessions. They are learning how a family support system works. They are learning to never give up and how to always keep hope alive. They are learning how to advocate for themselves and others. They are learning that God works in mysterious ways. They are learning that prayers are answered in God's time. 

Most importantly, I am their mother and will always be their mother. No illness can ever take that away.  My kids will always have my heart and unconditional love. 

I have always listened to music. As a teenager, I always had the newest tapes - yes tapes, until CDs rolled around. I didn't really have a specific genre, just listened to all types of songs. During college and my adult years, I found that I listened to whatever my husband played. I never really cared what was playing. I enjoyed a little of everything. When by myself or in my car, country music was usually playing in the background.

Things have changed since my diagnosis. This past Christmas my husband gave me some earbuds as a gift. I told him thank you, but in my mind I was asking why? Why would he choose to give me ear buds when I don't even listen to music unless I'm in the car or he's grilling out. I don't know if he's realized the magnitude of the gift of music or not. This one small gift, earbuds, has helped me during some of my darkest most difficult times. My phone is loaded with songs, some country, a couple R&B, but mostly contemporary Christian. Whenever I am in physical pain or feeling emotionally down, my favorite relaxing playlist is roaring in my ears. 

Music has changed me. Music inspires me. Music comforts me. Music keeps me moving forward. I have found many various songs and artists that I enjoy and even depend on. I have shared a few below, all which can be heard by clicking on the song's name. Hopefully, you will enjoy them as well.

Inspires me 
This is My Fight Song by Rachel Platten
 I just ran across Rachel Platten's song this past week, thank you Twitter, and it has already become one of my favorites. The chorus is the part that really catches me, which I have shared below. (Click the song title to hear the song.) There are so many days that I just feel like I have nothing left inside of me to fight with. Gastroparesis takes a really tough toll on my body, between nausea, pain, fatigue, and dehydration. Sometimes activities as easy as getting dressed can use up all of my spoons. But this is NOT the life that I intend to live. I will keep fighting, not only for my family and me, but for all that suffer from Gastroparesis or depend on feeding tubes. This is OUR life, and it's time to TAKE OUR LIFE back. I'm going to successfully get mine back by keeping my hope alive, which I admit is really difficult at times and by continuing with my advocacy efforts.

 
Move by Mercy Me
Mercy Me has been a song that I have relied on for the past few months. The lyrics really hit home with me and provide me with a positive message that keeps me going. There are many days that I am so worn and defeated. Sometimes, I feel like giving up on myself, on my doctors, or even advocating. Giving up would be the easiest thing to do, just not the logical choice. But I can't give up! I won't give up! I know that GOD has brighter days ahead of me. I just have to follow his path. I know that my family, especially my kids need me and I owe it to them as their mother to keep fighting. I realize that there are so many others struggling with Gastroparesis, some much worse than me, and unfortunately many without the support that I have. I can't let them down. I have to keep moving! Things are going to go wrong sometimes, I get that. I will feel lost sometimes, I get that. Yes, my struggles and battles will feel heavy at times. BUT, I WILL keep moving. May be slower, may be different, but I will keep moving because everything's going to change. God has brighter days ahead. 

 
Comforts me
Strong Enough by Matthew West
Recently, music has not been just for enjoyment purposes. I never truly grasped how amazing listening to music, especially music about God's presence and love can be, until this past January when I was at my lowest.  Now, when I am in distress pain and other awful symptoms, I turn to music for comfort. Sometimes it works better than others, but I always gain at least a little comfort. I have a numerous songs on my Calming Playlist. I listen to my playlist daily, sometimes all day, just to feel God's love and arm around me. I attempt to be strong, day in and day out, especially for my children. But sometimes, no matter how hard I try, I'm not strong enough. And though it's difficult to accept, it's alright. I have learned that I don't have to be strong enough all of the time. God is here, by my side, to give me strength. If I am giving up, by allowing God to take control and be strong enough to help me, that's alright. I just can't give up all alone. 


Mind Singer
Carry Me Now by Josh Wilson
Have you ever had a song, that sounds like the lyrics were written about you, from your own personal thoughts and feelings. The next song, by Josh Wilson, is like that for me. Chronic illnesses are awful. Knowing that no cure is available and things may never improve, can be extremely heart breaking. Gastroparesis has led me down many emotional paths, while trying to treat the symptoms. Every time I hear "Carry Me", I lose myself in the lyrics of the song. There are days that I can control or better yet, handle my symptoms with medication and my heating pad. But there are too many days that I have to endure horrible abdominal pain that breaks me, nausea to the point of heaving or vomiting, fatigue that keeps me grounded, bloating to the point of exploding, all which make receiving formula (nutrition) impossible. These days make me so weak physically and emotionally. There are times when I have to miss out on things I love and enjoy, most involving my kids. Additionally, sitting by the sidelines watching the school year slip by without me in the classroom has been tough as well. Through it all, I have tried to stay as positive and strong as possible. I have asked, pray, and even pleaded with God to carry me. I have depended on him carrying me when I'm exhausted, sad, scared, hurting, tearful, and even losing my patience.


Music has had a positive impact on my life, especially in the past 6 months. I have a new appreciation for music, found many songs that I was unfamiliar with it, and new artists to follow.  I still enjoy listening to a variety of music styles and am always searching for new songs to add to my playlist. Maybe one of your favorites. I welcome you to share some of your favorite songs and their role or impact in your life. 

This blog is different from most. It is not about me. It is simply about a victory won in a quest for Gastroparesis Awareness!

Exciting news, for me anyway. Melissa, Becky, and I have been in contact with UNC FGIMD center a few times about needing information about Gastroparesis in the public eye. They listened and have been trying to assist us in our mission. They contacted Dr Koch at Wake Forest to write an article about Gastroparesis. YAY! Last week they published their Spring edition of their DIGEST newsletter online and in print. The article about Gastroparesis is very informative for patients, medical providers, and the general public. They definitely did not disappoint me. To add icing on the cake, some of our links were shared in the additional resources section.

https://www.med.unc.edu/…/professio…/digest/digestspring2015

Why do I blog? Why do I share my personal life to the public? 


I was asked this question today. Why? 
At first I didn't truly know how to respond. 


Anyone that knows me personally, knows that I am usually a very shy and private person. At least I used to be. Living with Gastroparesis has changed me. I have shared time and time again about it's negative impact on my life. There have been a few positive changes as well, though often hidden or overlooked due the horrible symptoms. New friendships has definitely been the brightest silver lining. Blogging has become the most recent. So why?

Blogging came upon me by accident. It began when WEGO Health invited me to partake in a challenge for Health Activist. I agreed to participate and asked my friend to accept the challenge as well. WEGO Health sent us an email with a different prompt for each day of the month. We were to write an entry and then share it on twitter with a #HAWMC. I have to admit that we were surprised when we read some of the prompt ideas. I'm not sure what exactly we were expecting, but we learned very quickly that this challenge was not going to be easy. Some of the prompts were very personal. But you know what? We survived and it was very insightful for me. 

Blogging opened my eyes to a new world. To begin with, I shared on Twitter and also shared some of the articles relating to Gastroparesis in my Support Groups. After receiving positive feedback from the GP community, I was encouraged to continue writing. But it wasn't until I sat down and actually went back to read my own blogs, that I realized the importance of blogging.  I knew that my writing could help others see a different side of me, I never imagined that they helped me see a different side of me. Through my writing, I saw how fragile and bleak my life seems at times while also witnessing my strength, endurance, and faith. While trying to offer hope and inspiration to others living with GP, I was actually inspiring myself. That's when I decided to create my own personal website (blogging) page. I created my blog GastroparesisCrusader.weebly.com to help others understand Gastroparesis while also helping fight for a cure and better treatments. But most importantly, for me. I have found blogging empowering, regardless of the nature or the topic. 


My writing challenge with WEGO has now ended. I am no longer given a daily prompt to write about. So will I stop writing? Absolutely not. 


So back to the question. Why do I blog? 

I blog to educate the public about Gastroparesis. 
I blog to help spread awareness.
I blog to connect with others and hopefully inspire them to keep hope alive.
I blog to allow my family and friends understand my life and what the battles I fight.
I blog to put my emotions in words.
I blog to understand my self.

So the question is, do YOU blog?