So, yeah if you're reading my post, I thank you. Your support is appreciated. I don't want to hurt your feelings, but this post isn't about you. Sorry, this post is about a very well-loved, can't imagine my life without, there for me ALL the time, helps me relax, rarely let's me down blessing. What could it be you ask? 

My Heating Pad!!

Today's writing topic, as part of the WEGO HEALTH CHALLENGE is to write a product review.
"What’s your favorite health-related product? Share it with your community and tell them why you love it so much and how it has helped you on your patient journey." #HAWMC

In all honesty, I should write about my feeding tube and pump, since it's what keeps me living by receiving some sort of nutrition, no matter how small. Though I am very thankful for it, it can also be a hassle. My heating pad, well warming throw, has a more positive relationship.


Sunbeam Warming Throw
My soft gray warming throw has provided me with a lot of comfort whenever Gastroparesis is pulling me down. Countless days, I have had it wrapped around my abdomen and lower back with heat level on high. The heat from the throw can help me feel cozy and warm when I am tired and withdrawn. More importantly though, the throw can lessen some of the abdominal pain and discomfort. No, it's not perfect and unfortunately it is not magic. It doesn't completely take away the pain, yet can help the muscles relax and help "mute" some of the pain. It is not uncommon to have this trusted throw working against my discomfort for 5 hours or more each and every day. I would be lost without this amazing health product. 

My warming throw is not perfect, though. If I had my choice, it would be cordless, so I could walk around with it on my abdomen. As it is now, I have to disconnect and take it off (so sad) whenever I need to be away from my recliner. The only other thing I would change, would be to make it get hotter without burning my skin. I have used it so much that my skin has become accustomed to it. While it still provides much needed relief, it just doesn't feel hot anymore.

In conclusion, I am very appreciative of the Sunbeam Warming Throw that my husband purchased for me. The heat helps numb some of my abdominal pain and discomfort, while providing much needed cozy comfort.

#HAWMC Challenge: 
Bye, bye, bye…
Living witsh an illness, you are more likely to face people who don’t understand your daily struggles. Sometimes, these people can be inconsiderate and hurtful. Have you ever wanted to tell them how you really feel, but didn’t feel like you were able to? Now is your chance! Write an open letter to the people who have hurt you. What would you say to them? What lessons would you like them to learn?

I have been hurt and dismayed time and time again by ego-tistical doctors. My health is placed in their hands, yet sometimes they fail me. My letter today is directed toward two doctors that I hope I will never have again. 

Dear Dr. A & B,

I am sorry that I ever had the opportunity to meet you. When I saw you this past Autumn you took my condition lightly. You never took the time to listen to my issues and concerns. You walked right into the room and passed judgement on me, never considering the true cause to my pain, nausea, and inability to tolerate tube feeds. You both came in my room preoccupied, literally staying for less than 5 minutes. 

Dr. A, 
I met you in the emergency room after my first ever ambulance arrival. I had never had 911 called for me or been on an ambulance. I was in so much pain, even having difficulty breathing or moving. I was already frustrated, after the nurse rolled her eyes at me when I needed help changing to the gown. When you walked in you were told that I had Gastroparesis. When asked, you said that you were familiar with Gastroparesis. The nurse came in with your treatment choice, a GI cocktail. Shortly afterwards you discharged me with a couple prescriptions, both of which are NOT supposed to be taken with Gastroparesis. No thanks there. Not only that, when I was leaving I asked for a copy of my labs. Believe it or not, the had a lab value that was way off. What a joke! After emailing my GI, I was instructed to see my PCP as soon as possible to have the lab retested.

Dr. B,
I met you 2 days later as inpatient. You walked in my hospital room. Before examining me or listening to me you told me that my pain, nausea, and inability to run tube feeds was a result of stress! REALLY! I could not believe my ears. In fact, I was lost and in tears. I know my body. I know when I am under stress or not. That could not be further from the truth. I was in PAIN, severe pain. I had been 3 days with no tube feeds. And you told me it was because I was stressed. I was blessed that you were only in charge of my care for 1 or 2 days. (My other hospitalists were great.)

I can not explain how belittled you both made me feel. I was suffering. I was in so much discomfort that death actually sounded like a good option. You both disappointed me beyond measure. I needed you to provide comfort. It is very difficult for me to trust and feel comfortable with doctors; And you both intensified my reasons for why I hold this distrust toward doctors. 

Luckily, not all doctors are like you. There are some doctors that listen to my complaints, communicate with me about my needs, and honestly try to help me. Unlike you, there are some doctors that treat patients like real people and actually care! These authentic doctors were able to take my symptoms and form a real plan on how to improve my condition. What you thought was "nothing" or just "whining" actually kept me hospitalized for an entire week. During those 2 weeks I had no nutrition in my body, just iv fluids. They determined that I had gallstones and an inflamed gallbladder accompanied by a horrible Gastroparesis flare. 

It was NOT just a stomachache and it was NOT stress. You both failed me and I hope I never have to meet your presence again. If I do, I hope you have a new outlook on how to treat and listen to your patients. Please take a moment to think about how you would like yourself and/or your family members treated by their doctors. And beware! I have become much more vocal about the treatment I deserve. I no longer hesitate. If I think you are taking me as a joke, I will let you and the administrator know. Patients should be treated like real people and not just a chart. Sometimes, just taking a moment to discuss the symptoms with the patient, guides you so much better than just numbers or notes on a chart.


I hope that you never have to experience the negativity that I faced under your care. Well, actually I take that back. I hope you do see how lack of respect from your doctor feels. Maybe then you can take a step closer to being a respectable doctor that actually improves their patients' conditions.

Everyday as I read post on Facebook, read messages on Inspire, read other's blogs, and read "tweets" I am reminded of how many unique, compassionate, and strong people I truly know. The majority of these brave warriors I have never met in person, and most likely never will. However, our connections, our discussions, our prayers, our tears, our frustrations, our support for each other is so much greater and more in-depth than with our other "in-person" friends. It doesn't matter if they have Gastroparesis,  Crohn's , Colitis, or some other chronic digestive disorder, we truly understand each other. And understanding is sometimes all that we desire.

These connections, these friendships, are more meaningful than most even realize. We can truly "see" each other's invisible battles and help each other fight through them. We don't have to hide. We don't have to put on a mask. We don't have to pretend to be feeling well. We don't have to pretend to have control over our condition. We can be "real" again. We can openly share our troubles and gain strength from others while at the same time giving hope to one another. We can be honest about what is bothering us (medically, physically, emotionally, etc) because we know someone is truly listening, someone that can relate. We can cry and laugh together over situations that others can't even imagine. We can share and receive the best possible advice. We can work together to bring awareness publicly.

I never truly grasped this until recently. As a part of our advocacy group (Gastroparesis: Fighting for Change) we started sharing our stories via email, letters, and openly on the internet. (Yes, this frightened me more than anyone will ever know.) I knew it was for a great cause. I admit the public, including medical providers and researchers, needs to be aware of Gastroparesis, so hesitantly I began sharing my story. Now most, especially those that are not affected, are probably sick and tired of reading my post. But that's alright. What I didn't know was how much it would help me and others like me. 

Melissa and her idea of this advocacy group found me at a point when I was in despair. I had begun giving up hope. I was depressed and felt alone in my suffering. I knew my family wanted to understand, they just couldn't. I knew my family wanted to help me, they just couldn't. And knowing how helpless they felt just made me feel more helpless and alone. That's when I was asked to join the newly forming advocacy group, which at that point had no name. I was weary and skeptical, but at that point figured why not?

Now, just a few months later, I see the blessing. I see the rainbow in my darkest storm. God has set me on a path, which I am trying my best to understand and follow. Being a part of the advocacy group led me to sharing my inner most battles with Gastroparesis for anybody in the world to read. At first, there was too much fear for me to grasp. But now, I am enlightened. I am empowered. I am a peace.

Yes, I still have my struggles with Gastroparesis. Yes, I still feel awful. I am nauseous and fatigued to levels that only other GPers can understand. Yes, I hurt. Yes, I still want to eat but instead am struggling to receive adequate nutrition in my feeding tube. But you know what - that's ok! We all have our battles and we will eventually overcome them. I may not have all the answers. I may not like my options. But I can't sit back and drown in misery over the unknowns or the things that are out of my control. I have to do my best to "live", however it may be, until new treatments become available. I will not let Gastroparesis win, and neither should you.

I hear constantly how strong I am and how I am a ray of hope. I hear about how stories like mine and other GP friends have helped inspire others. I have received messages about how reading my story provided strength at a time when they were considering ending their life. I have been told that reading about the faith I have has improved their faith. That if I can still stand strong after what I've been through, then so can they.

You know what? My strength has not come solely from within. I have gained a lot of strength from God. What's ironic is the same people, people surviving with Gastroparesis and other invisible illnesses, are the ones that inspire me. You are the ones who provide me strength with your posts and stories. You are the ones whose struggles, push me to fight even harder for awareness. I am not strong alone. I am just as weak, torn, and frustrated as many of you. But we have to stick together. 

As a team, we are no longer alone! As a team, we can help each other up! As a team, we can fight for a cure! As a team, we can win! 

Quitting is not an option! If you feel weak, reach out and we'll catch you! We will not let you fall. Just reach out, please. 

You're a warrior! Keep up the great fight! 

`

Hobbies are known as activities that one engages in for fun and relaxation, but not related to an  occupation. 

Prior to my illness, I had a few hobbies that I really enjoyed, most of which involved being outside and playing with my kids. Backyard baseball, softball, basketball, football, fishing, and swimming kept me busy while providing quality time with the ones I loved most. I also enjoyed reading, mostly Nicholas Sparks, and writing poetry. 

It's no secret that having hobbies can be beneficial when living with a chronic illness. Anything that can help take your mind away from your symptoms is well worth it.  For a while, I was able to keep these hobbies after my diagnosis. However, in the past year, some of my hobbies have been changing. My symptoms have been in a whirlwind. Constant nausea, abdominal pain, and fatigue keep me from being able to actively engage or enjoy my once valued hobbies. As much as I love the idea of going outside and playing ball with my kids, I just don't have enough energy, not to mention the other symptoms. Knowing how important it is to relax my mind and focus on other things besides my body, I have searched and searched for new hobbies. 

I would love to say that I crochet and knit. I actually welcomed the idea and my husband purchased a load full of yarn. The yarn is neatly packed in a box beside my recliner. I downloaded countless youtube videos and went crazy pinning craft ideas on pinterest. I was so excited and had great plans. I was going to create scarves, beanies, little animals, etc to donate to the children's hospital and sell to raise money for Gastroparesis research. Unfortunately, I have not been successful at learning how to do any of this. For some reason, I couldn't stay focused what I was doing. Hopefully, one day I can add this to my list of hobbies.

Sometimes reading or watching movies are hobbies for me. It just depends on how my day is, symptom wise. If my symptoms are low, I can become engaged in the storyline and find real enjoyment. Even finding myself lost in the story, feeling all the emotions of the characters. I love it when that happens. I wish reading and watching movies could take me away from my everyday symptoms more often. 

I would like to say that researching and online advocacy for Gastroparesis is a hobby. In some ways it is. Creating T-shirts, creating videos, blogging, FB messages, tweets, etc are all ways that I try to escape the way that I'm feeling and help improve the overall prognosis of living with Gastroparesis. I find the information and knowledge insightful, while also enjoying the connections and friendships that are made.

Attending my daughter's softball games are also a hobby of mine. I loved playing softball, throughout my years in school, and seeing her play brings back many fond memories. I love watching her play, she makes me so proud. Yet, sometimes it takes all of my energy just to get there. It would be nice if I said that going to her ballgames, helps hide and mask my symptoms, but sadly that's not the case. While enjoying being out and being at her game, I still have to battle the abdominal pain and nausea, which the heat increases. I also have to be extra careful not to become more dehydrated than I already am. Yes, I enjoy the time and will continue to push myself to attend the games. I'll just need extra rest the following day.

Listening to music has become a new hobby of mine. I never really listened to music, unless I was in the car or my husband was grilling out. However, now I spend hours of the day listening to the music with my ear buds. I have gained an appreciation for contemporary Christian music. Artist such as Matthew West, Josh Wilson, Tenth Avenue North, and Chris Tomlin are a few favorites of mine that help me relax. 

I may not have many hobbies, yet the ones I do have keep me going from day to day. New ones will surely arise eventually. Maybe one of yours?

Now that you know more about me, I'd enjoy hearing from you. What are your favorite hobbies and why?

CHALLENGE: Reflection. #HAWMC

As I sat down to write today's post, I began pondering over what I should write about. I have shared my medical story many times over and wanted today's post to be different. Then the idea hit me; I've been dealing with gastroparesis non-stop for over 2 years now and have crossed paths with a variety of medical providers. Why not reflect on the medical care I have received? Why not share what determines if a physician is remarkable, acceptable, or unacceptable in my eyes? Thus, my blog: What Defines a Doctor from a Patient's Point of View was started.

My relentless journey with the inability to eat, pain, nausea, and other debilitating symptoms from Gastroparesis began in Feb of 2013. Since then, I have had experiences with numerous medical providers, Some of the physicians I became very fond of, others I couldn't get away fast enough, with the majority just being acceptable. All of them had medical degrees with the purpose of healing. Successful physicians can be found in all of the categories. However, the patient experience varies greatly. So why were they so different? What defined these physicians?


EGOtistical Doctors
All of you, I am sure have had doctors like this. You can't ignore them and you can't get away from them fast enough. These are the doctor's that walk into the room with EGO written all over them. Their presence screams, "I am almighty! I know everything and you don't know anything." These doctors are the ones that are able to make a diagnosis based on just your medical charts and labs alone, before ever stepping in the door. Rarely do they even have a seat. They are fast speaking and ask limited questions, most of which are answered with a simple yes or no. They do not allow you, the patient, to describe your ailments, share concerns, or ask questions. Why should they? They already have your diagnosis made, remember. The EGOtistical doctor doesn't care what you have to say and may even belittle you if you question their diagnosis. If a prescription is made, this style doctor doesn't explain why or how the medicine will work or what side effects to beware of. Before you know it, the doctor is out the door and you are on your way - most of the time more confused and frustrated than you were before entering. EGOtistical doctors also despise their patients asking to see someone else for a second , opinion. In fact, they are known to discharge you from their care if you consider a second opinion. They already know that they are always right, so no second opinion is ever needed in their minds. Addtionally, EGOtistical doctors do not know you. They do not see you as a person. Many times doctors in this category are very intimidating. Personally, I hate appointments with doctor's like this! Unfortunately, we can't always avoid them. When possible ties can be cut, but if inpatient that's not always feasible.

Acceptable Doctors
Most of my medical experiences would fall in this category. In my mind, acceptable doctor's still depend heavily on your medical chart and have an idea of what their diagnosis will be before walking in the door. However, while in your presence, they do ask meaningful questions and allow you time to answer and describe your symptoms. These doctors seem to listen, welcome questions that you may have, and provide answers to the best of their knowledge. If a prescription is given, this style doctor will explain why they are prescribing it and how it will help. The acceptable doctor will usually agree to you having a second opinion if you so desire, though rarely bring the notion up themselves. As a patient, we usually keep these doctors. They meet our medical needs, their care is tolerable, acceptable, and pleasant. We don't want to switch to another doctor in fear of ending up with an EGOtistical doctor.  

Remarkable Doctors
I have been extremely blessed to have met some remarkable doctors! In all of my years, I have met a select few that would fall in this category. All of them were met during the past 2 1/2 years as a result of my Gastroparesis. All of them were unique and have their own individual personalities, yet share many similarities. If ALL medical providers could model themselves after these remarkable doctors, healthcare would change dramatically. So what makes them so remarkable?

In my opinion and from my personal experiences, remarkable doctors portray their humanity. When they walk in the door, they are truly there for you. They are not preoccupied and they are not rushed. Remarkable doctors genuinely want to know what is going on with you and why. They care and it's evident in the discussion you have. That's right, discussion. The visits with these doctors are not mirrored as an interview. Instead, the doctor and the patient works as a true team.  During the conversation, the doctor and patient discuss what's been going on, why it may be occurring, what helps and what makes it worse, and possible solutions. This doctor has read over the  medical chart and will even refer back to it during the visit, but if he/she has a possible diagnosis in their mind, it's not definitive until after talking with the patient. This style of doctor helps the patient feel comfortable and relaxed. They are not intimidating and actually offer encouragement and empathy. They address concerns or worries that you may have, sometimes even prior to the patient asking. This style doctor will sit near you, hold eye contact, and even share personal experiences that they may have had themselves. Remarkable doctors do not take credit in knowing everything. They are honest with the patient and even admit when you are embarking on new territory together. They may suggest getting a second opinion, even offering to refer you themselves. They may reach out to their peers for advice. They may share how they have been thinking about your situation after hours. They may share a video that they found and uploaded to their phone, just to better explain your condition and/or treatment. Regardless, they don't give up and continue searching for the best treatment options for you. Remarkable doctors are "real". They are also able to comfort your fears with reassurance. They find ways to answer your questions, no matter how trivial, and help ensure that you understand. In rare occasions, they may even keep in touch with you and your condition via email contact. These outstanding doctors are amazing team players, willing to communicate not only with you, but also communicating with your other healthcare providers. A patient NEVER wants to let go of these doctors, as it is too difficult to find another remarkable doctor to replace them.

As stated before, I have had the privilege to experience care from a few doctors that belong in the remarkable category, all within the past 2 1/2 years. Two of them while inpatient. If I do end up being inpatient again in the future, which I hope is not the case, I would gladly accept them as my doctor again. There's been a couple of doctors and/or medical providers that I have seen that could very likely be placed in this category. I believe that both my GI and PCP for the past couple of years were remarkable, caring, and compassionate doctors. However, due to both moving out of state, I am now in the process of rebuilding my medical team. I am hopeful that my new doctors will also be in the "remarkable" category.  It sure would be less daunting if remarkable doctors were the norm, not the exception.

How about you? What qualities define your medical providers?

As part of my WEGO Health writing challenge, I was asked to write about a "dream vacation." If I could go anywhere in the world where would I go? At first my mind began flooding of various possibilities: Australia, Paris, Alaska, Hawaii, the Caribbean. But then my mind hesitated. Even without financial worries, would these really by my "dream vacation"? The more I considered the question, the more my mind thought about my past few vacations......

July 2013 - Just a few months after Gastroparesis made an impact on my life. I was just beginning to learn how to live with not only Gastroparesis, but also a feeding tube that I had received during my 2nd hospitalization in May 2013. I was sore but strong willed. This illness and tube would not define my life. My family and I headed to New York City. I had been looking forward to visit NY for many years, and now my family and I were actually going to be there. I was so excited! Overall, we had a nice time. Due to my lack of energy, we depended on subways, taxis, and tour buses to move us around. We were unable to have a true NY experience, since I was unable to physically walk around and explore, but we were OK with that. We had a lot of fun even if I was exhausted; At times didn't even think I would make it to the subway or back to the hotel, but I did and it was definitely worthwhile. I returned home very sore and fatigued, but felt strong mentally, and loved the time I had with my family. I looked forward to returning again with more energy. (Little did I know that my level of energy would continue to dwindle as days, weeks, months, and even years moved on.)

Spring 2014 - My family decided to take an extended weekend trip to the mountains, just a few hours away. We had reserved a cabin and planned on it being a low key, relaxing with each other, kind of trip. Overall, we enjoyed our time at the cabin. My husband cooked the majority of the meals outside on the grill, had a smore cookout one night, and enjoyed time in the jacuzzi. (I swear if I had a jacuzzi, I would live in it.) I'm not sure if it was from trying a little bit of a biscuit or from eating a graham cracker, or just me, but that Sat night my husband almost had to take me to the ER for intense pain that my meds would not help. The next day, we spent the day at the cabin, mostly watching TV and playing on technology devices. Once again, we were trying to stay away from the ER. I was so thankful that my kids didn't seem to be irritated about how our trip ended. I honestly believe it bothered me much more than them. I was so upset and hurt. Yes, I enjoyed the time with my family, but why did I have to feel so bad. What was wrong with me? How could I change it?

Summer 2014- My husband and kids took a few small vacations, involving just 1 or 2 nights away without me. My symptoms from Gastroparesis and side effects from my medicines were too much for me to handle and I did not want to hinder their fun and enjoyment. I wanted my kids to have a great time! I didn't want to be a burden to them. They went deep sea fishing a few times and to Kings Dominion, all of which I wished I could have been a part of. It was extremely difficult for me to stay home. I desired to be with them so much. I felt so isolated. But how could I have gone? I could barely do anything at home. At least I was able to stay busy by spending the majority of my days with my dear grandmother (MAMA). 

October 2014 - Now this was a magical trip for me! God really blessed me here. I had just lost my grandmother a few weeks earlier. My kids and I were hurting emotionally from letting her go, even though we knew that she was in a better place. To ease our pain, my husband and I decided to embark on a family trip to the Nascar Race in Charlotte. We even purchased PIT Passes, which was a first for us all. I didn't know how this would work out, but I pleaded with God to please help me be able to enjoy this time with my kids. I have to say, God truly answered my prayers. My nausea, pain, fatigue were present, but at least they remained tolerable and I was able to hide them from the family. We were able to meet a few of the race car drivers, including my all-time favorite Martin Truex, Jr. We had great seats and ALL of us had a fantastic time! Memories were definitely made on this trip that will last a lifetime. 

I am sad to say, that was my last vacation. My issues seem to have progressively gotten worse. I am literally scared to take a trip anywhere; especially when simple outings to the grocery store, child's sporting events, and even a movie have become difficult for me. Hopefully, this will all turn around and change soon.

So back to the question:
If I could go anywhere in the world, where would I go? What would be my dream vacation?
My answer would have to be another magical weekend like the one in Charlotte. I need a symptom free weekend with my kids! I want a vacation where I am able to ACTIVELY have fun with them. I know they'd love to return to Disney World, being they were too young to truly remember the last time when we went, or a return trip to NY. (Both which are hard for me to even fathom presently.) We've briefly thought about renting an RV and taking a road trip, possibly to TN, MO, or IN. At least I would always have a place to lay down if needed. I'd love to return to another Nascar race and possibly even see Martin Truex, Jr again. I just don't know when to tell if a vacation is feasible. 

How can I know when I will have a "good" weekend? How can I make plans in advance, when I don't even know how today will be? All I know is that any vacation that results in having fun with my 3 kids is what makes my vacations memorable. My kids are what keep me going. I don't believe it's the location that truly matters. I don't really care where I go, near or far, as long as we are able to spend quality time as a family. 

To be perfectly honest, I think I'm just in need of a vacation from myself. Or better yet a vacation from Gastroparesis. Then all vacations with my family will be dream vacations for me!