My Journey

“And we need to share our story. Not with everyone but with someone. There is someone who is like you were. And he or she needs to know what God can do. Your honest portrayal of your past may be the courage for another’s future.” - Max Lucado

 

I borrowed this from a friend's facebook status. I absolutely love it. I couldnt agree more with this statement.

 I think that is part of the reason why we go through things to help others that may be going through something similar and possibly encourage them and let them know that there is hope and that they are not alone, that someone else has been through it too. I believe that God has given each one of us a story to share with the world ♥ I know that my experiences with Gastroparesis and all of my health issues I can either do two things with: keep them to myself or share them with others. I chose to share my journey with other people because you never know who it is going to help.

Whatever you are going through, there is a purpose behind it as hard as it is I promise that there is a reason. Even in the darkest situations, you can still find some light. 

Here are some links to videos from recently when my mom and I spoke at a womens get together called Chicks Like Us. It is just a small portion of my journey but it gives you a glimpse to what I have gone through. In watching this I hope that it encourages you to know that life is a journey, we all have our ups and downs, our speed bumps, hills, and valleys, but life is a ride and we can make the most out of it and enjoy the ride.

My Journey Part 1

Gastroparesis Awareness 

My Journey Part 2

My Gastroparesis Journey Video 

My Journey Part 3

Thanks for watching and reading!!

Keep on fighting, stay strong, and don't give up hope!

<3~Megan 

Beating Gastroparesis: My story

I think that it is important to hear different people's journeys of dealing with Gastroparesis. Even though we all have the same diagnosis of Gastroparesis, we are all different. The severity of our pain, nausea, vomiting, bloating, etc changes from person to person. There is not just a "textbook" definition that everyone falls under that has this diagnosis. We have different causes as well and different ways of coping and how we handle ourselves. I think it is helpful to hear other people's journeys of living life with Gastroparesis.

This is just a glimpse into my life with GP. I came up with ten questions that give you a little insight of what life is like for me and how I deal with my disease.


1. When were you diagnosed?
I was diagnosed with Gastroparesis in July 2009. I was seventeen at the time. It was amazing to actually have a diagnosis for all of my symptoms, even though it has no cure. Being able to have a name on it was helpful and gave me some comfort because I knew what I was dealing with and could start figuring out how to treat it.

2. What caused your Gastroparesis?
Right after I turned sixteen, I came down with a bad stomach virus that lasted for about 2-3 weeks. It was horrible to go through. I was vomiting all of the time, had constant nausea, and got to the point where I got dehydrated. I was in guitar lessons at the time and had our big concert in the middle of May and was so sick. That night I ended up in the emergency room for dehydration. I had blood work done and got fluids through my iv. I had been pretty healthy growing up and this was my first time actually in the Emergency Room. It was terrifying because I just felt awful and was miserable.
After that visit, I never really got better. The stomach virus went away but I was still vomiting 2-3 times a week in the beginning, as time went on it progressed and I saw my pediatrician who referred me to see a GI specialist because she felt like there was something going on with me. I ended up having more vomiting and constant nausea. It got as bad as vomiting 10-12 times a day and not tolerating anything, even water. I was constantly in the hospital for dehydration.

3. How long have you had symptoms?
I started having symptoms in May of 2008, right after my sixteenth birthday. It's been almost four years now living with daily nausea, vomiting, bloating, acid reflux, weight loss, and dehydration.

4. Who diagnosed you and how were you diagnosed?
Getting diagnosed with Gastroparesis was such a challenge. I was misdiagnosed with something called Cyclic Vomiting Syndrome. The doctors did not know what was wrong with me and had no idea. My mom kept researching my symptoms on the internet and finally found out about Gastroparesis. When we read the description and all of the symptoms it was like they were talking about me. I matched it perfectly. We printed out the information on Gastroparesis and brought it into my GI doctor. She had me tested for Gastroparesis at an outpatient center through a Gastric Emptying Study. This test is where you eat these eggs that have radioactive dye in them and them each hour you get an x-ray done that shows where the food is and how much has moved through your stomach and digestive system. After four hours only a small trace of food had moved out of my stomach, the rest was sitting there in my stomach. The test was hard because I was super nauseous during it and had to try not to get sick during the test. As soon as the test was over I ended up getting sick in the bathroom.

5. What adjustments have you had to make to your life?
Living with Gastroparesis has changed how I live my life. Its a struggle to get out of bed in the morning and fall asleep at night. I live with constant pain and nausea and everyday I get sick. It's like having the flu 24/7. Its become my "normal" though for my life and I'm learning to accept it and deal with it the best that I can. I have had to cut back on how much I work and change all of my eating habits.I've had to change the activities that I can participate in as well.

6. How have your friends and family dealt with your sickness?
My family has been really supportive with my illness. I know that it is a struggle for them to watch me go through it and its hard because there is no cure and not much that we can do for it, but they have stayed with me during hospital stays, made me laugh, comfort me, take me to doctors appointments and the ER. My friends had a hard time dealing with me being sick. I was accused of seeking attention, making it up, trying to get out of hanging out with them. I lost my entire group of friends when I was getting diagnosed mostly because they did not understand what I was going through. Its hard enough to be sick but then to have people doubt you and spread rumors about you just makes things worse. I think its important to find people that can be there for you, even if they do not fully understand what you are going through, it helps to have people to talk to or that will listen when you need to vent. Its also important to find people that can handle you being sick and the sad thing is alot of people have a hard time coping with it.

7. What treatments have you found helpful for you?
I tried a bunch of medicines and had little luck with them. They were not helping my symptoms and in fact some of them made me worse or had bad side effects. On March 18, 2010 I had surgery to get my Gastric Stimulator which has been the best decision for my health so far, its not a cure and doesn't help everyone but has worked for me so far. In addition to the gastric stimulator I take phenergan for my nausea and zantac for my acid reflux as well as some other medications for my other diseases.

8. How has being sick affected you school/ work?
Living life with a chronic illness has greatly impacted the way that I did school. I had to finish high school through online classes because I could not sit in a classroom without getting sick. I wasn't able to make it to classes because of my health, but luckily I was able to complete my junior and senior year of high school all online. I actually ended up graduating with honors. It was a challenge, there were points where I thought I was going to have to drop out from high school completely because of all of my hospital stays and how sick I was. Now I am in my second year of college, which I did not think would be possible. I've had to make alot of accommodations with the way that I do school. I take mostly online classes and took one on campus class per semester, that was a struggle. I've had to miss classes for surgeries, long hospital stays, and had to use a wheelchair and a walker one semester because of the pain in my legs that I was having. I have managed to get good grades still. It's important to tell your teachers the first class that you have a chronic illness and get in touch with the disability office at the college so that they can help you make accommodations. I started going to college to become a Child Life Specialist, it is like a counselor for pediatric hospitals but they also plan fun activities and help children cope while in the hospital, however, since I've been sick I have wanted to be a nurse or my long term goal a nurse practitioner. My last hospital stay, I was talking to the nurses and techs and the tech actually convinced me to pursue my dream of becoming a nurse. I decided to take this semester off from school because of my health situations, but am planning on going back this summer to start nursing.

9. How has being sick affected your social life?
With being sick there is always an unknown, I never know when I am going to have a flare up. This makes it hard to plan ahead for events and activities. I also cannot just go out for pizza and its hard because many social activities seem to involve food. I try and make the most out of my life and try and still do some social activities, but there are times where it is hard just to get out of bed. I try and take each day one at a time.

10. What has given you hope/ encouraged you to keep fighting?
Many things have encouraged me and given me hope to keep on fighting against this disease. I really believe that everything happens for a reason and that there is a purpose for why I am going through everything that I am going through. I know that God wants to do something huge with my life and I feel that he gave me this and knew that I could handle it, even when at times it has been a challenge. I really enjoy being able to help others with this disease, I love getting to meet and talk to people from all over the world that have this disease. I feel like part of the way that I cope is to try and help others know that they are not alone in this and to encourage them to keep on fighting and remain positive. I have a passion to educate, spread awareness, and help people overcome this disease. Being able to talk to people that have Gastroparesis has been so helpful because they know exactly what its like to go through this. Anyone that is battling this disease gives me hope and encourages me to keep fighting.

Rare Disease Day 2/29/12

1/10 American's have a rare disease. Many of you know that I suffer from Gastroparesis, a chronic illness that I have lived with for almost four years now. In addition to the GP, I now have other diseases that have come along after it.
Gastroparesis is not technically a "rare" disease in the numbers of people that have it, but it is considered rare among the medical field because of the lack of research and awareness for this disease. Gastroparesis has been ignored by the medical community and it takes people a long time to get diagnosed because of the lack of research and awareness about this disease. Most people have never even heard of it, or are misunderstood on what it is.
If anyone ever has any questions about Gastroparesis or is curious about what I go through, please ask me! This is why I am so passionate about helping others with this disease whether it be through running a support group or spreading awareness by creating videos or other awareness events and activities & why I love to educate people in the medical profession, if I can help one person with this disease get diagnosed faster so they can get some treatment and don't have to suffer alone, then I wil do whatever I can to help.
For more information about Gastroparesis go to www.G-PACT.org

2012: A New Year

As 2011 ends, a new year begins. We move forward into 2012, with hopes and expectations of things we want to accomplish, things we want to change, and things that we look forward to and hope for in the new year.

For many of us, 2011 has been a challenge. For myself, I've dealt with several difficult obstacles this past year. High liver levels, hospitalizations, not being able to walk for over a month, dehydration, trying to succeed in college, getting more diagnosis's, having my heart broken, losing loved ones and people in my GP family, losing friends, multiple surgeries and so much more. Life definitely does throw you obstacles, but when we are faced with these obstacles we have a choice... to let it completely knock you down or decide to keep on going and try as best as you know how to overcome what is happening.

This is not what I had planned for my life, I never would have thought that any of this would have happened to me this year. But as I reflect on the year I realize some things that I have been through I cannot change, some things I have to accept, and some things I have to let go of. Life is a journey, a passage from one stage to another, and each stage helps us. Even though we do not understand why things happen they help us to grow, to become stronger than we could have ever been without going through these obstacles.

"Your journey has molded you for your greater good, and it was exactly what it needed to be.Don't think that you've lost time. It took each and every situation that you've encountered to bring you to the now. And the now is right on time." ♥

As you reflect on 2011, think of some positives that have happened in your life this year. For myself, I look at how despite what I went through health wise I was still able to complete my college classes, I look back at the fun times I had going to concerts and being able to do things "normal" at times even if I suffered later. I look at how many people have come into my life that are truly amazing. I look at the amazing group of GP'ers that I have met whether it be in person or online. I look at how blessed I am to be apart of an amazing support group that has grown so much this year. I think about people that I have met and that I have been able to share my story with and hear their stories as well, whether it be a hospital roomate that inspired me, someone drawing my blood and getting to talk with them about Christ, nurses in the hospital that inspired me to stay positive, or even a tech that inspired me to change my career path and switch to becoming a nurse.. something that I have always wanted to do but was afraid my illness would get in the way. I look back and see even though a situation happened where I had my heart broken, I realize it was now for the best and realize how it has taught me not to let anyone influence me in a way that is too controlling. I'm thankful for my puppy that I have that is just the sweetest thing ever. I think about how many good memories I have had with my family this year and the time that I have spent with them.

" Believe in yourself and all that you are. Know that there is something inside you that is greater than any obstacle."

Now as we move forward into 2012, people make new years resolutions. In the year 2012, focus on trying to make the most out of what you have been given, focus on trying to find something good in everyday. Focus on trying to be strong, but also knowing that it is okay to cry and have breakdowns. Focus on strengthening your relationship with God. Focus on helping others, or just being there for someone to listen and allow others to be there for you as well. Focus on finding things in life that you enjoy and take the time to discover who you are and be all that you can be.

I hope that everyone has an amazing 2012, and that it is full of happiness, laughter, joy, and good health!!

Sending lots of love!

Make the most out of what you have been given!

Why not make the most of what I have been given? If I can use my sickness to help one person know that they are not alone, help them to not give up and keep on fighting, and brighten their day a little bit…if I can use my sickness to let someone going through the same thing know that even though the rain might be pouring in their life right now and things might not look that promising… the sun is shining if you look for it, we just have to find the little blessings in our life, the spots that the light shines through.. then I am alright with being chronically ill, because even through my suffering if I’m still able to make a difference, then its worth it.

This is kind of what I base my life around. Lets face it.. I have Gastroparesis, I'm chronically ill and will be for the rest of my life. There's no cure.. right now. But that isn't going to bring me down. I do not enjoy hospital stays, emergency room visits, the vomiting, or being in constant pain.. but why should I sit there and get myself down about it? I'm already going through enough with all of the symptoms, why make myself feel worse by letting it get to me? I can't change my diagnosis. But I won't let my diagnosis define who I am. I won't let my diagnosis get the best of me and take control. Yes, I do have a chronic illness but I'm still a person. I want to be able to try and make the most out of what I've been given.

I know its hard, there are days where I feel like giving up and just feel like not caring anymore. Its alright to cry, its alright to not like that you are chronically ill. But I can't change that I am chronically ill.

What I can change is my attitude about the whole thing. I can try and find the bright side in each and every single day that I am given. I can find things to smile about, things that I can be thankful for. You can too. Find at least one thing to be thankful for each and everyday. I am thankful for the support of my family and friends. I'm thankful for the prayers, support, and encouragement from people all over. And in a way, I am glad that I do have Gastroparesis.. I guess 'glad' is not the best word, but what I am trying to say is this. Gastroparesis was something that you could take as something horrible, but I now looked at it as a blessing in disguise. Gastroparesis isn't that great, its something I have to live with everyday but it has taught me many things. Gastroparesis changed my whole life. It has brought me out of my comfort zone. I used to be a very shy person and was not able to overcome it until I got tired of feeling like I was the only one with this disease. I wanted to see if there was others out there going through the same things that I was going through. Searching for people and finding people that were living their lives with this disease made me realize there were people who completely understood what I was going through. I got to the point where I made the choice to do something about it and that is why I try and do many awareness opportunities. Before I had GP, I was wrapped up into a group of friends that now looking back on it I realize they only brought me down. I let them influence me and my actions, and did not care about others in the same way that I do now. I think being chronically ill has made me more compassionate for other people to try and be there for them and help them in whatever way possible. I took many things for granted before this diagnosis and now I am thankful for the days that I have good health days. I'm thankful for so many things in my life now. I'm thankful for the people that stood by me when everyone else turned on me. I went through a period where I had no real friends except for one person. I had lies and rumors spread about me as well as people confronting me in person and making accusations instead of really listening and believing what I was going through. At that time it truly hurt me, but I am so blessed to have people in my life that would be there for me even if it was 2am and I was sick or needed someone to talk to. I'm blessed to have a family that supports me through my illness. I know that it is hard on all of them. I've felt guilty about it for so long because I felt I was causing them all stress. But I am truly thankful for them and how they try and help me get through things. I am thankful for every single person that I have met with Gastroparesis, another GI disease, or just a chronic illness in general. These people truly inspire and give me hope to keep on fighting.

I guess what has really been on my heart lately is to let everyone know that Gastroparesis is difficult to deal with, but you don't have to go through it alone. Dealing with any type of illness is hard, things might look like they aren't getting better, but know that they will. You have to keep faith and hope that they will. We have to hope that one day there will be a cure for this disease. We have to be thankful for the little things in our lives. This little note might be all over the place.. its my thoughts though.I just felt the need to share with you guys. love you all!