Today marks the final day of G-PACT’s “Digestive Tract Paralysis” Awareness week, but that does not mean that Awareness ends for another year…
Yesterday was a reminder of just how far we have to go to raise Awareness in the Medical profession for me.
I had my first appointment with the Gastroenterologist at VCU… and it was a nightmare. “We do not treat gastroparesis… there is one drug available in Canada called ‘Domperidone’ but it is not available in the US’”
When consider that this is a TEACHING HOSPITAL you can see why this floored me.
This is what is being taught to Medical Students, then they go out into the world and continue thinking this… and we are the ones to suffer from their lack of Awareness and knowledge.
The fight is so very hard and those fighting to raise Awareness often just do not have the energy to fight harder… that is why we need healthy people… those not affected… to help us fight this battle for Awareness.
The Breast Cancer Awareness campaign works so well because friends and family fight just as hard to raise Awareness, they do not expect those suffering to carry the weight but instead they step up and hold walks, auctions and rallies.
We need your help. Plain and simple.
It is a matter of psychology… when a person with a disease tries to raise Awareness of their condition it can be seen as attention seeking and almost selfish. People shy away and tend to avoid that person because they do not want to get the ‘lecture about the disease’ again… BUT, when a friend or family member is trying to raise Awareness about a condition of their loved ones they are seen as selfless and loving and people are willing to listen because they like the idea of being associated with a selfless person.
Awareness will raise a thousand fold if the friends and family were as involved in raising Awareness as those suffering… I guarantee it.
Saturday, August 27, 2011
Friday, August 26, 2011
Teenage Dream--NOT!
My name is Ashley Jenkins and until October 2009 the only sicknesses I ever had were asthma and allergies. I went on a Class trip in 8th grade and came back with a virus, which we think was swine flu. A lot of my friends had it too but when they all got better I didn't. My family doctor, Dr. Waters, was and continues to be amazing through all this.
In January 2010 my gallbladder was removed, relieving my constant pain. Until that point I had a GI Specialist who endlessly accused me of having an eating disorder. It was so discouraging. He decided to send me to a head doctor and when the Psychologist said I didn't have an ED, the GI Doc didn't even believe him! Then members of my family started to believe him and say " why don't you just eat?" This was the worst on me, how could some of my family even think that! One day one of them asked me what I thought of my body and since I knew where they were going with the question I simply told them I looked pretty darn hot to be sure! That shut them up for the time! :)
Sorry if any boys are reading this; to keep my sanity throughout this whole ordeal I had to find a funny thing to keep my spirits up, since nearly every time I go to the Doc, I get a pregnancy test I've began to come up with funny way to tell them I'm not pregnant. Such as, "Are you kidding!?! The boys at my school are gross!" or " Well, my momma's with me pretty much all the time, so I think she'd know." The nurses seem to like it and it gives us something to think about when I can't sleep some nights.
After the Gallbladder surgery I was finally referred to Dr. DiLorenzo, he turned out to be my saving grace. In January 2011, I was finally diagnosed with Gastroparesis. Dr.D immediately sent me up to see Dr. Teich about the Gastric Pacemaker. We had planed to have the pacer inserted immediately but insurance had other ideas. Insurance denied the pacer and while we waited for our appeal to go through I continued losing weight. During that more ED rumors went about at school and if people weren't spreading eati
G disorder rumors people were telling me how lucky I was go be so skinny! Even my principal said, "oh Ashley, if only we all had your problem." as much as that upset me it upset my momma even more so she set my principal straight on that. When I got to my lowest point of 88 pounds they decided to surgically place a GJ tube. While that was getting placed I had wonderful friends and family mailing tons of letters to the insurance company about how much I needed the pacer. Soon after the feeding tube placement, they approved the Temporary Pacer. When I finally came out of the anesthetic, for the first time in over a year, I wasn't constantly nauseous! It was amazing! March 7, 2011 my permanent gastric pacemaker was placed. Since the insurance company waited so long to approve it, I got a complication, SMA syndrome. Because of that I had to get a PICC line for IV nutrition and spend another 3 weeks in the hospital. During that 3 weeks the ED accusation was back, a child life specialist came into my hospital room to talk to me. She asked what the line in my arm was for. I told her it was my PICC line and we would have TPN go through it so I would gain weight. She jumped on the chance to ask how I felt about gaining weight, and I said, " Quite frankly I can't wait I am far too skinny!" again I shut her up, haha. Honestly how can I have an eating disorder? I spend at least an hour a day figuring out what food I'm gonna eat that is easiest for me to digest and will get me the highest calories.
I am now 15 years old, I still have my PICC line, have to take multiple pills to manage problems and I still struggle with my GP but I know for a fact things could be SO much worse! I havent been to school since Feburary 4, 2011 and now I get to go back for my Sophomore year! I'm really excited for that too, I'm just slightly worried that people won't understand gastroparesis and just chalk it up to an eating disorder yet again. But you gotta try, and if they dont believe me I've learned not to care. Just gotta keep up hope that someday they will!
In January 2010 my gallbladder was removed, relieving my constant pain. Until that point I had a GI Specialist who endlessly accused me of having an eating disorder. It was so discouraging. He decided to send me to a head doctor and when the Psychologist said I didn't have an ED, the GI Doc didn't even believe him! Then members of my family started to believe him and say " why don't you just eat?" This was the worst on me, how could some of my family even think that! One day one of them asked me what I thought of my body and since I knew where they were going with the question I simply told them I looked pretty darn hot to be sure! That shut them up for the time! :)
Sorry if any boys are reading this; to keep my sanity throughout this whole ordeal I had to find a funny thing to keep my spirits up, since nearly every time I go to the Doc, I get a pregnancy test I've began to come up with funny way to tell them I'm not pregnant. Such as, "Are you kidding!?! The boys at my school are gross!" or " Well, my momma's with me pretty much all the time, so I think she'd know." The nurses seem to like it and it gives us something to think about when I can't sleep some nights.
After the Gallbladder surgery I was finally referred to Dr. DiLorenzo, he turned out to be my saving grace. In January 2011, I was finally diagnosed with Gastroparesis. Dr.D immediately sent me up to see Dr. Teich about the Gastric Pacemaker. We had planed to have the pacer inserted immediately but insurance had other ideas. Insurance denied the pacer and while we waited for our appeal to go through I continued losing weight. During that more ED rumors went about at school and if people weren't spreading eati
G disorder rumors people were telling me how lucky I was go be so skinny! Even my principal said, "oh Ashley, if only we all had your problem." as much as that upset me it upset my momma even more so she set my principal straight on that. When I got to my lowest point of 88 pounds they decided to surgically place a GJ tube. While that was getting placed I had wonderful friends and family mailing tons of letters to the insurance company about how much I needed the pacer. Soon after the feeding tube placement, they approved the Temporary Pacer. When I finally came out of the anesthetic, for the first time in over a year, I wasn't constantly nauseous! It was amazing! March 7, 2011 my permanent gastric pacemaker was placed. Since the insurance company waited so long to approve it, I got a complication, SMA syndrome. Because of that I had to get a PICC line for IV nutrition and spend another 3 weeks in the hospital. During that 3 weeks the ED accusation was back, a child life specialist came into my hospital room to talk to me. She asked what the line in my arm was for. I told her it was my PICC line and we would have TPN go through it so I would gain weight. She jumped on the chance to ask how I felt about gaining weight, and I said, " Quite frankly I can't wait I am far too skinny!" again I shut her up, haha. Honestly how can I have an eating disorder? I spend at least an hour a day figuring out what food I'm gonna eat that is easiest for me to digest and will get me the highest calories.
I am now 15 years old, I still have my PICC line, have to take multiple pills to manage problems and I still struggle with my GP but I know for a fact things could be SO much worse! I havent been to school since Feburary 4, 2011 and now I get to go back for my Sophomore year! I'm really excited for that too, I'm just slightly worried that people won't understand gastroparesis and just chalk it up to an eating disorder yet again. But you gotta try, and if they dont believe me I've learned not to care. Just gotta keep up hope that someday they will!
Thursday, August 25, 2011
The one you don't know, but need to understand
By: Carissa Haston
The one you called lazy has been up all night sick & fought to get out of bed just to make it through the doors to work or school.
The one you say is attention seeking because they use a medical device or parked in HP spot & doesn't "look" sick considered leaving that device at home, just to appear normal, but would be putting health and comfort at risk.
The one who went to the bathroom after eating only a few bites that you accused of having an ED has a paralyzed GI tract (Gatroparesis and Chronic intestinal pseudo-obstruction) & can't keep food down.
The one you judged & shut up for being honest when you asked how they felt just needed someone they thought cared to open up with. Don't ask if you don't really want to know.
The one you cut out of your life because they can't spend as much social time with you and missed your party or wedding has been fighting just to make it through a single day & accomplish basic daily tasks and chores. Why not visit THEM for once and plan an activity they can participate in?
The one you used to love & cut out of your life because they are not the same has an invisible illness & needs to be understood. Listen to their story. If you don't believe them, talk to others who are in the same shoes. So many people with the same stories aren't making this stuff up! Plus, look at the medical test results and description of what their diagnosis can do!
The one who didn't buy you a nice gift in return for a nice gift you gave them is on disability, has high medical expenses & is just trying to keep from going into debt from medical bills and general living expenses alone.
The one you accused of being depressed and not physically caring for themselves had to lay down five times in between bathing, dressing, taking meds, and doing simple "get ready to go out" tasks. They may have had to shower the day before simply to be able to get up and go the next day. They may have been up for two-three hours just preparing to go out and be somewhat presentable. They are just TIRED from simply doing that and may not feel very social!
The one you gossiped about for not dressing as appropriately as necessary may not be able to wear "normal" clothes. They may have a paralyzed gut that holds food in, making them bloated and they need to wear comfortable clothes. Their hair may be falling out from poor nutrition and they may need that scarf or hat to hide bald spots. They may have pain from osteoporosis, neuropathy, auto-immune disorders, and need to wear comfortable shoes.
The one you accused of being self-focused and not caring about you is dealing with so many overwhelming pressures and fears themselves that sometimes they just can't give back what you expect or want. But they DO care about you too.
People with invisible illnesses need your support & need to feel included. They need to be treated normally, but also need to know you are there for them if they need you. Don't think of them as being lazy, attention seeking, making things up, self-centered, or not caring about you & YOUR needs too. Your accusations only make their situations worse and harder to manage.
The one you called lazy has been up all night sick & fought to get out of bed just to make it through the doors to work or school.
The one you say is attention seeking because they use a medical device or parked in HP spot & doesn't "look" sick considered leaving that device at home, just to appear normal, but would be putting health and comfort at risk.
The one who went to the bathroom after eating only a few bites that you accused of having an ED has a paralyzed GI tract (Gatroparesis and Chronic intestinal pseudo-obstruction) & can't keep food down.
The one you judged & shut up for being honest when you asked how they felt just needed someone they thought cared to open up with. Don't ask if you don't really want to know.
The one you cut out of your life because they can't spend as much social time with you and missed your party or wedding has been fighting just to make it through a single day & accomplish basic daily tasks and chores. Why not visit THEM for once and plan an activity they can participate in?
The one you used to love & cut out of your life because they are not the same has an invisible illness & needs to be understood. Listen to their story. If you don't believe them, talk to others who are in the same shoes. So many people with the same stories aren't making this stuff up! Plus, look at the medical test results and description of what their diagnosis can do!
The one who didn't buy you a nice gift in return for a nice gift you gave them is on disability, has high medical expenses & is just trying to keep from going into debt from medical bills and general living expenses alone.
The one you accused of being depressed and not physically caring for themselves had to lay down five times in between bathing, dressing, taking meds, and doing simple "get ready to go out" tasks. They may have had to shower the day before simply to be able to get up and go the next day. They may have been up for two-three hours just preparing to go out and be somewhat presentable. They are just TIRED from simply doing that and may not feel very social!
The one you gossiped about for not dressing as appropriately as necessary may not be able to wear "normal" clothes. They may have a paralyzed gut that holds food in, making them bloated and they need to wear comfortable clothes. Their hair may be falling out from poor nutrition and they may need that scarf or hat to hide bald spots. They may have pain from osteoporosis, neuropathy, auto-immune disorders, and need to wear comfortable shoes.
The one you accused of being self-focused and not caring about you is dealing with so many overwhelming pressures and fears themselves that sometimes they just can't give back what you expect or want. But they DO care about you too.
People with invisible illnesses need your support & need to feel included. They need to be treated normally, but also need to know you are there for them if they need you. Don't think of them as being lazy, attention seeking, making things up, self-centered, or not caring about you & YOUR needs too. Your accusations only make their situations worse and harder to manage.
Superheros! - Awareness Week Blog by Kat Price
Who wouldn’t want to be a super hero? They’re pretty cool. Can you
imagine if you had the ability to fly, shoot lightning bolts from your
fingertips or run faster than the speed of light? Probably
impossible. But what about being invisible? Is that possible? You
bet it is! Especially if you are someone with a digestive disorder.
For those of us who suffer from a digestive disorder, where people
cannot “see” how much we suffer, how much our lives have changed, how
much we struggle just to survive, our illness is invisible. Yes, on
the outside we look perfectly fine. We may even look great. Good size,
great weight, healthy color. But on the inside, it is a daily
struggle. “Come to lunch with us. We’re going to a buffet.” Are you
kidding? I’m on a liquid diet. “After that, we’re walking the
entire mall.” Yeah, I don’t even have the energy to drive to the
mall. “Oh, yes, later we’ll meet at the club for drinks.” People, I
can’t even down my water. “Gee, you're lot of fun!” Well, It’s a bit
hard to explain your circumstances when there is no visible evidence
and most people need some kind of proof to believe what they fail to
see. I can recall many instances of telling people about my condition,
and having the words, “But you don’t look sick” thrown back in my
face. The hurt that accompanies those words is tremendous. I remember
people, including those in the medical field, simply thinking I was
sick because I was “stressed out.” It saddens me to think how many of
us have spent time trying to convince those around that we are indeed
ill. There are times when I feel really good and I want to emulate
that by dressing up and looking fabulous. However, doubt (might
reality work better?) eventually seeps into my mind. I look too good.
I won’t look sick enough. They won’t believe I’m sick. I look too
healthy. It’s a terrible cycle to be in day after day. I hope for the
day when I will be able to say, "I am sick, but it has been a good
day." I hope for the day when I don’t have to whip out my entire
medical file and that people will simply believe me. I hope one day
for a cure…but in the meantime, I will continue to be a
superhero…doing all I can to change the world. Take off my cloak of
invisibility One step. One leap. One thunder bolt…at a time.
Life is Weird - Awareness Week Blog by Sarah McFeggan
I was reading one of the blogs that had been posted this week about how
important it is to try to find the positives from our negative
experiences. No, I'm not happy I have GP and I would love for it to go
away. Even as I am typing this I am bloated, uncomfortable, and
constipated (sorry if that is TMI). However, something positive did
come from this fiasco called GP. Not having ever had a chronic
condition before, I could not truely understand what my mom went through
having osteoarthritis. I knew that it caused her pain and discomfort
but I could not relate to her experience. Once I developed GP, I was
able to relate to her on a totally new level. I am able to understand
how exhausting it is to put on a smile even though I feel like crap, and
how frustrating it is to not have the energy to do the things I once was
able to do. And to not have my body do what I want it to. She was
there with me for all of the tests, trips to the ER, and doctors
appointments. She passed away just over two years ago, and I have to
say, I am thankful that we were able to spend that time together and
that I was able to relate to her own situation on some level. We were
close, but we became closer because of GP. Life is weird.
A Life Changing Diagnosis - Awareness Week Blog by Megan Herndon
Gastroparesis is a life changing diagnosis. It can be heart breaking and can
take a lot of patients into a state depression. Food seems to be the subject of
every party, but for GPers just having a good time is the main focus. We can
learn to live a life not just based on food. Gpers can not drown their sorrows
into a big pint of ice cream or pig out on Thanksgiving. We have to be gentle
with out stomachs because we know how gentle and fragile they are. I have a new
found appreciation for food. If I go out to eat at a restaurant and someone
complains about their chicken being a little dry I just get irritated, because
to me the chicken was divine because it is one of the foods my stomach can
handle. Gastroparesis has changed all of our lives; we have bad and good days,
but I know that for each of us our whole perspective on food and life has
changed for the better. We have learned to handle stress better and we have
learned what an importance good friends and family are. It may be frustrating to
have GP but there is a reason each and every one of us has it and it might be so
we can make a huge difference in someone else's life. I hope we can still
encourage and uplift fellow GPers to stay strong and keep fighting because we
are all in this battle together. Just because all our symptoms or food
tolerances might be different we are still fighting together to find a cure or
treatment for Gastroparesis.
take a lot of patients into a state depression. Food seems to be the subject of
every party, but for GPers just having a good time is the main focus. We can
learn to live a life not just based on food. Gpers can not drown their sorrows
into a big pint of ice cream or pig out on Thanksgiving. We have to be gentle
with out stomachs because we know how gentle and fragile they are. I have a new
found appreciation for food. If I go out to eat at a restaurant and someone
complains about their chicken being a little dry I just get irritated, because
to me the chicken was divine because it is one of the foods my stomach can
handle. Gastroparesis has changed all of our lives; we have bad and good days,
but I know that for each of us our whole perspective on food and life has
changed for the better. We have learned to handle stress better and we have
learned what an importance good friends and family are. It may be frustrating to
have GP but there is a reason each and every one of us has it and it might be so
we can make a huge difference in someone else's life. I hope we can still
encourage and uplift fellow GPers to stay strong and keep fighting because we
are all in this battle together. Just because all our symptoms or food
tolerances might be different we are still fighting together to find a cure or
treatment for Gastroparesis.
Wednesday, August 24, 2011
Awareness… why the lack hurts so bad - Awareness Week Blog by Penny Rorrer
Why are we battling so hard to raise Awareness of the different Digestive Tract Paralysis conditions?
We are battling for the Caldwells… a young Military family in Mississippi who has been through an absolute nightmare because lack of Awareness within the Department of Human services and with a Pediatrician ripped their family apart when they were accused of not feeding their child when, in truth, their sweet little boy has Gastroparesis which was diagnosed with a Gastric Emptying Scan. Why, if it was diagnosed, are they still being accused? Because the Pediatrician that the Department of Human Services insisted they use ignored the diet and recommendations from the specialist that diagnosed him and told the parents to take him off the blended food diet and Pediasure™ and when they did he lost weight and he was taken away. They are still fighting to get him back…
We are battling because a lack of a cure has cost us yet another beautiful person, Julianne (Jules) McLaren passed from our world but not our hearts on Friday, August 19, 2011… the first day of G-PACT’s Digestive Tract Paralysis Awareness Week. Jules always had a smile and a hug for everyone and anyone no matter how bad she was feeling and the world needed her. Her Husband and her children need her, but the lack of a cure ripped her away from all of us.
The lack of Awareness is causing untold pain… it is not just that sometimes it feels like we just can’t get people to care about something that is not happening to them but it is that the lack of Awareness is ripping away pieces of our hearts.
Awareness has to happen to prevent tragedies like the situation the Caldwells are facing…
Awareness has to happen so public pressure is put on Governments to fund research into better treatments and a cure… without the Public getting involved and letting the elected Politicians know that this is important to them the Politicians will not take notice and will not care because their main focus is getting votes and keeping in office.
The DTP Family is suffering today… not just physically but emotionally as well.
You CAN make a difference!!!
Want to know more about Digestive Tract Paralysis conditions, ask us!!! We will be more than willing to share all we know with you.
Contact your Politicians (a list can be found on G-PACT’s facebook page at www.facebook.com/GPACT) and ask them why more isn’t being done.
The only way you can fail to help is by failing to try.
I know that this is supposed to be about how my life is with Digestive Tract Paralysis and my personal story… but this IS how my life is… it is suffering from a lack of Awareness and the emotional pain that comes with it.
I Have A Dream - Awareness Week Blog by Kimberly Parker
I have this re-curring dream about gastroparesis. That doctors figured out a
cure, that the cause of it is just a a little virus. Like the common cold or
the stomach flu since they post have similar symptoms like pain, nausea,
vomiting,inability to eat or smell foods. And then by resting, drinking a
ton of orange juice and taking a few pills, it will all be over. After
following the doctors orders I will go to bed sick, but then I will wake up
the next morning to the smell of bacon, pancakes, waffles, eggs with a ton
of cheese, syrup and butter poured over it all. I will then make my way to
the kitchen, grab myself the biggest plate and fork, sit down to eat....and
then I wake up, the dream is over.
Ohh how I wish that one day I can finish the dream and then wake up and
fulfill my dreams.
cure, that the cause of it is just a a little virus. Like the common cold or
the stomach flu since they post have similar symptoms like pain, nausea,
vomiting,inability to eat or smell foods. And then by resting, drinking a
ton of orange juice and taking a few pills, it will all be over. After
following the doctors orders I will go to bed sick, but then I will wake up
the next morning to the smell of bacon, pancakes, waffles, eggs with a ton
of cheese, syrup and butter poured over it all. I will then make my way to
the kitchen, grab myself the biggest plate and fork, sit down to eat....and
then I wake up, the dream is over.
Ohh how I wish that one day I can finish the dream and then wake up and
fulfill my dreams.
Monday, August 22, 2011
Nobody Likes a Debbie Downer - Awareness Week Blog by Kimberly Parker
In any relationship, there always comes a time when you say to yourself, am
I doing something wrong, is there something extra that I should be doing to
satisfy the other party or I wonder what this person thinks of me? Whether
its a friend, co-worker, family member or spouse, the deeper you go into the
relationship, the more the anxiety and paranoia increases and you start to
believe that the other party is tired of you. Or...maybe that is just me.
The life I had before I got sick (which I refer to as fun kim times) was
just as you read it...fun. While I didn't consider myself to be the life of
the party, I was always able to have a good time. I was always out with
friends, doing what college students do best and had no complaints about it.
MAN, do I miss those times. As soon as I started to get sick I felt as
though the people that were closest to me were getting bored with me. No
longer was I able to go out and be the fun person everyone knew me as. My
days and nights were consumed with me being in pain, lying in bed crying.
And as they say, nobody likes a debbie downer.
The longer I stayed sick, the less friends I had. So maybe I thought, if I
explain to them exactly what is going on, maybe that will put me back on the
fast track to friendship. I started to be honest with people and tell them
what was wrong with me and many people understood and offered to help and of
course others just scurried along as if I had asked them to carry my first
born child. The ones who stayed, only were there for a brief moment. Then it
came to me...Maybe I needed too much help? Trips to the doctor, and to the
ER in the middle of the night are not on a college students personal
agenda. At one point in time, I felt that I was doing something wrong. That
my sickness, was annoying people, that I was being too much of a burden to
them.
That was exactly the case...and it hurt. Now that I am a college graduate
and the people who were there and not there are long gone, I do have a few
good relationships. People who were able to put up with all of my extra
baggage for an extended period of time. They call and text me, send me
messages on facebook and always say that they love all of me, both the fun
kim and the kim who has a illness. I am so grateful for the living
relationships but always think of what my life would have been like if the
people from the dying relationships would have stuck around.
But now its time to stop living in the past and focus on my life in the
present and the future. Maybe it will be filled with many more relationships
than before!
Twinkies!!!! - Awareness Week Blog by Sarah McFeggan
There are A LOT of foods/drinks that I miss since I developed GP. I
went from eating and drinking whatever I wanted to the following: Boost,
milkshakes, peanut butter, cottage cheese, chicken noodle soup, white
breads, plain pasta, Kraft mac n cheese, Activia, milk, soy milk,
Propel, ice cream, animal crackers, eggs (sometimes), chicken/turkey
slices (sometimes), cheese, and Twinkies. Yes, Twinkies. I can't
tolerate fruits and most vegetables but I can tolerate Twinkies.
Craziness! I have to say that my friends and family are really good
about asking me where I can and what I can eat. They used to feel badly
eating in front of me but I told them not to worry and that I am used to
it now. Which is sad, but true. And I don't really crave what they are
eating- most of the time that is. I try to not let it get to me or get
me down but sometimes it's hard. For example, going to the Taste of
Madison was NOT a good idea. Being surrounded by hundreds of food
vendors and watching thousands of people eat food that I could not was
just a tad depressing to say the least. I was able to eat some of a
pretzel and some vanilla ice cream though (trying to see the positives).
Not being able to socialize and celebrate with food and drinks is hard.
Especially when I'm thinking of re-entering the dating world (Yikes!).
Eating mac n cheese on the first date does not sound very attractive to
me! Although, if he ate it too it would be okay. At least I am a cheap
date. :) GP has also impacted my joy of traveling. I love to travel
but it's harder now. I'm constantly thinking about if and when I can
have my mini-meal or if I can eat at certain places. I have to make
sure I pack what I can eat or go shopping when I get to my destination.
And my energy isn't the same as it used to be due to my diet, or if I
eat the wrong thing I'm not able to eat or drink like I should because
I'm bloated and in pain. I wish there was a cure for GP and the other
digestive/intestinal conditions that people live with. As with much in
life, it isn't fair. And not being able to eat chocolate is just plain
wrong and unconstitutional!!
PS- Twinkies taste really good when they are frozen. ;)
Zits, College and Homework - Awareness Week Blog by Megan Herndon
Zits, College, Homework: These are mainly the only things a sixteen year old should
have to worry about; not how much fiber is in their pasta, or how many grams of
saturated fat are in the soup, or even how much protein they are getting in a day to
make sure their blood sugar does not drop.
Hi, my name is Megan and I am sixteen years old with Gastroparesis or better
known as a paralyzed stomach. Even though I have to think about what I am
putting into my stomach to make sure I can get enough nutrition for each day; I
still can live a pretty normal lifestyle. To do this, I need to make sure that
not every moment is about food. I strive to spend lots of time with friends and
family who help me take my mind off my stomach troubles. Although to make sure
I do not have any stomach problems I have to make sure that I know that I am
getting the nutrition my body needs to keep going with my busy schedule. With
my senior year, cheerleading, driving, homework, tests, quiz's, and everything
else going on I need to know that GP is the last of my worries.
Each and every day is a new day some with bloating troubles, naseau feelings,
or just fullness all the time. Although I have the stomach flu 24/7 I also know
that things could be a lot worse; I could have had stomach cancer. My life is
always busy or something is always going on, but since I have been diagnosed
with GP I have learned to live every moment to the fullest, treasure every bite
of food, and enjoy nice company. I have also learned that stress is so not
worth what it does to my stomach, and that I am probably worrying about
nothing. Gastroparesis has taught me so many life lessons along the way, and I
may not know the reason I have been diagnosed with this terrible disease but I
know that there is a reason. What that is I am not sure, but I am willing to
find out!
have to worry about; not how much fiber is in their pasta, or how many grams of
saturated fat are in the soup, or even how much protein they are getting in a day to
make sure their blood sugar does not drop.
Hi, my name is Megan and I am sixteen years old with Gastroparesis or better
known as a paralyzed stomach. Even though I have to think about what I am
putting into my stomach to make sure I can get enough nutrition for each day; I
still can live a pretty normal lifestyle. To do this, I need to make sure that
not every moment is about food. I strive to spend lots of time with friends and
family who help me take my mind off my stomach troubles. Although to make sure
I do not have any stomach problems I have to make sure that I know that I am
getting the nutrition my body needs to keep going with my busy schedule. With
my senior year, cheerleading, driving, homework, tests, quiz's, and everything
else going on I need to know that GP is the last of my worries.
Each and every day is a new day some with bloating troubles, naseau feelings,
or just fullness all the time. Although I have the stomach flu 24/7 I also know
that things could be a lot worse; I could have had stomach cancer. My life is
always busy or something is always going on, but since I have been diagnosed
with GP I have learned to live every moment to the fullest, treasure every bite
of food, and enjoy nice company. I have also learned that stress is so not
worth what it does to my stomach, and that I am probably worrying about
nothing. Gastroparesis has taught me so many life lessons along the way, and I
may not know the reason I have been diagnosed with this terrible disease but I
know that there is a reason. What that is I am not sure, but I am willing to
find out!
Sunday, August 21, 2011
“The determination of the mind to win will always overpower the will of the body to quit.” - Awareness Week Blog by Courtney Powell
Wow, am I exhausted! My family just got home from a weekend
camping trip in PA. I haven’t gone camping since I was really young and
normally my family wouldn’t pick something like camping to do because of all
the supplies we have to bring along for me. It’s just hard to travel anywhere
when you’re on TPN. It was for my moms DMAT team though and I know she was
excited about the family camping trip and seeing all her friends and their
families, so I really wanted her to have a good time and just enjoy the weekend
without having to stress about me and my medical issues. She doesn’t get to do
a lot of things that are just for her because she spends most of her time
scheduling my doctors appointments, taking me to the doctor’s appointments,
dealing with surgeries and meds and just mini crisis’s like having an infected
port currently.
Yeah, that’s right. My port is infected. It’s awful. It
oozes pus and is so incredibly painful. I am keeping ice packs on it which does
help but lifting my arm or using my right arm for any reason intensifies the
pain in the port. Did I mention that I am right handed?? Yeah, that makes it a
tad bit harder. I went to see my surgeon on Monday and he said that for now the
port has to stay in unless I get a fever of 101 or higher even though it is
infected. I don’t tolerate feeds through my mic-key J button currently so if we
take out my port I have no way to get nutrition. My port is my life line and we
are stick in a lose lose situation. So, for now I am getting antibiotics
through my infected port to hopefully prevent the infection from getting any
worse. I can’t handle it getting any worse that’s for sure. My nephew’s baptism
is on Sunday and then I leave to go back to college afterwards. This kind of
stuff only happens at the most inconvenient times though, boy have learned that
already. My sister would hate me if I missed her son’s baptism though. I was
admitted when she hosted a party to announce her pregnancy and I was in the ER
the day of her baby shower. She was real emotional and mad one night telling me
I have already missed everything about the baby’s life so far. It made me feel
horrible because what she doesn’t realize is that I cried too when I was
admitted and the rest of my family was at the party and I found out she was
pregnant last via a phone call. It makes me upset too to miss out on life. I
would do anything to be able to attend everything, but sometimes it just not my
fault and she doesn’t really understand that. We can’t expect everyone to understand
life with GP but I just hope she realizes I love her and my nephew and do my
best to be there for them when I can.
Anyway, back to telling you about the camping trip. I don’t
think camping was as much fun for me as it was for my sister and mom. My little
sister brought two of her friends with and they had a blast swimming in the
pool, canoeing, going down a big blow up slide, taking walks, roasting
marshmallows, etc. You know all the normal camping activities. My moms work
friends were all there so she sat around and chatted a lot. It’s not that I
mind or anything, I’m not a little kid, I can occupy myself. It’s just that I
kind of felt out of place or in the way most of the weekend. We rented a cabin
that had a mini kitchen and a bathroom because my TPN and antibiotics have to
stay refrigerated and a bathroom is kind of a necessity with Gastroparesis. I
wasn’t able to go in the water at all because my G-tube was placed a week ago
and they say 4 weeks before you can submerge yourself in water. Plus, my port
is accessed and we didn’t want to deal with taking it out because of the
infection making it hurt exponentially when being accessed and de-accessed. I
had to sit inside for an hour each day while my antibiotics ran (if you ever
need a traveling IV pole hangers work great! Just put the bag on the hanger and
hang the hanger from the curtain rod or a cabinet) and I had to carry around my
backpack for my TPN and fluids the rest of the day. I felt like having GP
really held me back this weekend and I had to watch everyone else have fun
doing things I couldn’t participate in. At one point I wanted to go canoeing
with my sister and figured if I de-accessed it would be fine because it’s not
likely that I would really get wet canoeing. Last minute my sister decided she
didn’t want to go even though my mom had already de-accessed me. That was kind
of a let down and frustrating because then we had to re-access my port and boy
does that hurt right now. The good thing about having my moms DMAT team there
was that there were doctors and ER nurses. So, my mom’s friend who is a nurse
practitioner accessed my nasty infected port for us (took 3x to get blood
return) and then gave me a lecture on how the doctor needs to take it out this
week. Duh. I want it out too but he isn’t convinced yet. I couldn’t even do the
simplest camping activity of eating a toasted marshmallow. Well, I mean I
actually did eat one but then I ended up throwing up way more then just the
marshmallow. Thankfully I made it to the bathroom and didn’t do it in front of
my sisters friends (she would have been mortified) but then my sister had to
pee and I was in the bathroom for a long time so she was getting annoyed with
me. I felt like I was trying to be polite by using the bathroom instead of a
barf bucket, and I still get snapped at by her! 15 year olds, what can I say.
I’m just glad I’m not 15 anymore!
You know how kids wrap their retainers in napkins and then
the napkins accidently get thrown out leaving them to have to garbage pick for
them? Well, we had a similar experience last night or I guess early this
morning. Only, it wasn’t my retainers that got thrown out. I went to take my
meds around 1am and I couldn’t find my extender for my J tube. I knew it was in
a zip blog baggie and in the med bag on the counter last time I used it. I
searched everywhere in that small cabin kitchen and living room with no luck.
So I finally had to wake my step dad up because he was the one who crushed my
meds for me before going to bed so I assumed he moved it. Well, he didn’t (so
he says at least ;-) men never own up to losing things). So we both keep
searching and my mom heard us rummaging around and woke up and helped us. We
looked in every nook and cranny and finally all that was left to possibly look
in was the two garbage bags. So my parents garbage picked for my extender and
what do you know? The zip block baggie with it in it had gotten tossed out.
How? That’s still a mystery. At least we found it, but it’s this kind of stuff
that makes me feel in the way. If I didn’t have GP I wouldn’t have to take all
the meds I do, then I wouldn’t need my extender and they wouldn’t have had to
garbage pick at 1am. I am so thankful
they do this stuff for me though. I would never be able to get through this
hard journey with out all the love, help, and support my mom and step dad give
me.
We have gone through so much the past 5 years. We thought life couldn’t
possibly get any harder then me having Dysautonomia (POTS) and then suddenly
God switches things up a little bit and had my POTS cause GP last summer. It’s
been a struggle not only for me but for my family. They say that when a family
member gets sick the whole family does too and I think it’s a very true
statement. POTS and GP have not only changed my life but my family’s lives as
well. So many things revolve around me; where we can go for vacation, the
temperature of the house, the length of shopping trips, etc. It makes me feel
like a burden but I know my family loves me and would do anything to see me get
healthy again. For now though as I wait for that miracle just having them to
love me and support me makes it all better because what would life be without a
family to pick you up when you’re down, or to hold your hair well you puke??
;-)
I want to leave you all with a quote I always remember when
feeling discouraged.
“The determination of the mind to win will always overpower
the will of the body to quit.”
Keep fighting!!!
XOXO
camping trip in PA. I haven’t gone camping since I was really young and
normally my family wouldn’t pick something like camping to do because of all
the supplies we have to bring along for me. It’s just hard to travel anywhere
when you’re on TPN. It was for my moms DMAT team though and I know she was
excited about the family camping trip and seeing all her friends and their
families, so I really wanted her to have a good time and just enjoy the weekend
without having to stress about me and my medical issues. She doesn’t get to do
a lot of things that are just for her because she spends most of her time
scheduling my doctors appointments, taking me to the doctor’s appointments,
dealing with surgeries and meds and just mini crisis’s like having an infected
port currently.
Yeah, that’s right. My port is infected. It’s awful. It
oozes pus and is so incredibly painful. I am keeping ice packs on it which does
help but lifting my arm or using my right arm for any reason intensifies the
pain in the port. Did I mention that I am right handed?? Yeah, that makes it a
tad bit harder. I went to see my surgeon on Monday and he said that for now the
port has to stay in unless I get a fever of 101 or higher even though it is
infected. I don’t tolerate feeds through my mic-key J button currently so if we
take out my port I have no way to get nutrition. My port is my life line and we
are stick in a lose lose situation. So, for now I am getting antibiotics
through my infected port to hopefully prevent the infection from getting any
worse. I can’t handle it getting any worse that’s for sure. My nephew’s baptism
is on Sunday and then I leave to go back to college afterwards. This kind of
stuff only happens at the most inconvenient times though, boy have learned that
already. My sister would hate me if I missed her son’s baptism though. I was
admitted when she hosted a party to announce her pregnancy and I was in the ER
the day of her baby shower. She was real emotional and mad one night telling me
I have already missed everything about the baby’s life so far. It made me feel
horrible because what she doesn’t realize is that I cried too when I was
admitted and the rest of my family was at the party and I found out she was
pregnant last via a phone call. It makes me upset too to miss out on life. I
would do anything to be able to attend everything, but sometimes it just not my
fault and she doesn’t really understand that. We can’t expect everyone to understand
life with GP but I just hope she realizes I love her and my nephew and do my
best to be there for them when I can.
Anyway, back to telling you about the camping trip. I don’t
think camping was as much fun for me as it was for my sister and mom. My little
sister brought two of her friends with and they had a blast swimming in the
pool, canoeing, going down a big blow up slide, taking walks, roasting
marshmallows, etc. You know all the normal camping activities. My moms work
friends were all there so she sat around and chatted a lot. It’s not that I
mind or anything, I’m not a little kid, I can occupy myself. It’s just that I
kind of felt out of place or in the way most of the weekend. We rented a cabin
that had a mini kitchen and a bathroom because my TPN and antibiotics have to
stay refrigerated and a bathroom is kind of a necessity with Gastroparesis. I
wasn’t able to go in the water at all because my G-tube was placed a week ago
and they say 4 weeks before you can submerge yourself in water. Plus, my port
is accessed and we didn’t want to deal with taking it out because of the
infection making it hurt exponentially when being accessed and de-accessed. I
had to sit inside for an hour each day while my antibiotics ran (if you ever
need a traveling IV pole hangers work great! Just put the bag on the hanger and
hang the hanger from the curtain rod or a cabinet) and I had to carry around my
backpack for my TPN and fluids the rest of the day. I felt like having GP
really held me back this weekend and I had to watch everyone else have fun
doing things I couldn’t participate in. At one point I wanted to go canoeing
with my sister and figured if I de-accessed it would be fine because it’s not
likely that I would really get wet canoeing. Last minute my sister decided she
didn’t want to go even though my mom had already de-accessed me. That was kind
of a let down and frustrating because then we had to re-access my port and boy
does that hurt right now. The good thing about having my moms DMAT team there
was that there were doctors and ER nurses. So, my mom’s friend who is a nurse
practitioner accessed my nasty infected port for us (took 3x to get blood
return) and then gave me a lecture on how the doctor needs to take it out this
week. Duh. I want it out too but he isn’t convinced yet. I couldn’t even do the
simplest camping activity of eating a toasted marshmallow. Well, I mean I
actually did eat one but then I ended up throwing up way more then just the
marshmallow. Thankfully I made it to the bathroom and didn’t do it in front of
my sisters friends (she would have been mortified) but then my sister had to
pee and I was in the bathroom for a long time so she was getting annoyed with
me. I felt like I was trying to be polite by using the bathroom instead of a
barf bucket, and I still get snapped at by her! 15 year olds, what can I say.
I’m just glad I’m not 15 anymore!
You know how kids wrap their retainers in napkins and then
the napkins accidently get thrown out leaving them to have to garbage pick for
them? Well, we had a similar experience last night or I guess early this
morning. Only, it wasn’t my retainers that got thrown out. I went to take my
meds around 1am and I couldn’t find my extender for my J tube. I knew it was in
a zip blog baggie and in the med bag on the counter last time I used it. I
searched everywhere in that small cabin kitchen and living room with no luck.
So I finally had to wake my step dad up because he was the one who crushed my
meds for me before going to bed so I assumed he moved it. Well, he didn’t (so
he says at least ;-) men never own up to losing things). So we both keep
searching and my mom heard us rummaging around and woke up and helped us. We
looked in every nook and cranny and finally all that was left to possibly look
in was the two garbage bags. So my parents garbage picked for my extender and
what do you know? The zip block baggie with it in it had gotten tossed out.
How? That’s still a mystery. At least we found it, but it’s this kind of stuff
that makes me feel in the way. If I didn’t have GP I wouldn’t have to take all
the meds I do, then I wouldn’t need my extender and they wouldn’t have had to
garbage pick at 1am. I am so thankful
they do this stuff for me though. I would never be able to get through this
hard journey with out all the love, help, and support my mom and step dad give
me.
We have gone through so much the past 5 years. We thought life couldn’t
possibly get any harder then me having Dysautonomia (POTS) and then suddenly
God switches things up a little bit and had my POTS cause GP last summer. It’s
been a struggle not only for me but for my family. They say that when a family
member gets sick the whole family does too and I think it’s a very true
statement. POTS and GP have not only changed my life but my family’s lives as
well. So many things revolve around me; where we can go for vacation, the
temperature of the house, the length of shopping trips, etc. It makes me feel
like a burden but I know my family loves me and would do anything to see me get
healthy again. For now though as I wait for that miracle just having them to
love me and support me makes it all better because what would life be without a
family to pick you up when you’re down, or to hold your hair well you puke??
;-)
I want to leave you all with a quote I always remember when
feeling discouraged.
“The determination of the mind to win will always overpower
the will of the body to quit.”
Keep fighting!!!
XOXO
Never Giving up the Fight, My Journey with GP - Awareness Week Blog by Kat Price
I will never forget the first time I heard the word Gastroparesis. It was
in March 2008, when I was told I had Idiopathic Gastroparesis. My journey
with GP started in January 2008. I went from being a healthy, active and
energetic person to someone who was constantly nauseous, tired and felt full
after only a few bites of food. I was barely eating, yet my stomach was so
distended that I started to look pregnant. I needed to know what was
happening to me, and more importantly, why?
I was referred to a dedicated Gastroenterologist who was determined to help
me find those answers. Immediately, testing began and I spent most of
January and February in cold examination rooms waiting to being poked,
prodded, x-rayed and scanned. The answer we were seeking came at the end of
February 2008 with the results of my 4-hour Gastric Emptying Study. During
this time my stomach had emptied only 7% of the radioactive egg and toast
meal. The test was repeated and confirmation came in. I had Idiopathic
Gastroparesis! now what is that exactly and...WHAT DO I DO ABOUT IT?
I thought, now that we knew what we were dealing with, my next steps would
be easy: just manage it with medicine and diet. But I tried every medication
from Reglan to Domperidone with no success. Unfortunately, one of the
problems dealing with GP is that it is a unique disorder that affects each
person differently. Some medications work for some people, but for others
they don’t. Some can eat while others cannot. Some people vomits and others
don’t. Some lose weight while others gain.
Then, in April 2008, I suffered a severe gallbladder attack and had to have
laparoscopic surgery immediately to remove it. Things were rapidly going
downhill. My Gastroparesis was getting worse and when my doctor realized
he could nothing else for me he referred me to a teaching hospital where
they could give me further attention. One month blurred into the next. I
was still sick. I no longer ate regular food. I lived on 10-12 boxes of
Altoids a day. I was often dehydrated. I no longer had bowel movements.
My skin paled. The whites of my eyes turned yellow. There was nothing left
to do but take care of the problem by taking care of the problem, which was
my stomach. This meant a Total Gastrectomy.
So, on the morning of August 15th 2008, I was quiet, but apprehensive as I
awaited my 4-hour open stomach surgery. But I remember the ice-cold
operating room. I remember the hygienic look of stainless steel. I
remember the mask over my nose. Breathe in. Breathe out. Breathe…and then
I remembered nothing.
Where apprehension had mounted before, now there was only a deep blackness
and blessed peacefulness. Though I awoke with a long vertical scar across
my body, and no stomach, I awoke with something new…I awoke with Hope and
the opportunity to return to a normal life.
Fifteen days later, I return home to begin the slow process of learning how
live without a stomach. Some days were pretty easy while others extremely
hard as I learned which foods I could, or could not, tolerate. But I
remained optimistic that my life would gradually gain a sense of normalcy.
And for a while it did.
Then, May 2009, my “normal” life ended. In my case, all of my
pre-gastrectomy symptoms returned and I ended up in the hospital for 12
days, being diagnosed with Colon Inertia,(which basically means my colon
does not work as it should), and Pelvic Floor Dysfunction. Though I am on a
liquid diet, I’m often dehydrated and rarely do I have a bowel movement. A
colostomy, which could be a solution, is no guarantee that my problem would
be solved, and once my colon is removed, there would be no turning back. I
am very fortunate to have a great support group of understanding family and
friends. Currently, I am awaiting a FDA approved experimental colon study.
My faith has not wavered and I believe I will one day be able return to my
former active life.
in March 2008, when I was told I had Idiopathic Gastroparesis. My journey
with GP started in January 2008. I went from being a healthy, active and
energetic person to someone who was constantly nauseous, tired and felt full
after only a few bites of food. I was barely eating, yet my stomach was so
distended that I started to look pregnant. I needed to know what was
happening to me, and more importantly, why?
I was referred to a dedicated Gastroenterologist who was determined to help
me find those answers. Immediately, testing began and I spent most of
January and February in cold examination rooms waiting to being poked,
prodded, x-rayed and scanned. The answer we were seeking came at the end of
February 2008 with the results of my 4-hour Gastric Emptying Study. During
this time my stomach had emptied only 7% of the radioactive egg and toast
meal. The test was repeated and confirmation came in. I had Idiopathic
Gastroparesis! now what is that exactly and...WHAT DO I DO ABOUT IT?
I thought, now that we knew what we were dealing with, my next steps would
be easy: just manage it with medicine and diet. But I tried every medication
from Reglan to Domperidone with no success. Unfortunately, one of the
problems dealing with GP is that it is a unique disorder that affects each
person differently. Some medications work for some people, but for others
they don’t. Some can eat while others cannot. Some people vomits and others
don’t. Some lose weight while others gain.
Then, in April 2008, I suffered a severe gallbladder attack and had to have
laparoscopic surgery immediately to remove it. Things were rapidly going
downhill. My Gastroparesis was getting worse and when my doctor realized
he could nothing else for me he referred me to a teaching hospital where
they could give me further attention. One month blurred into the next. I
was still sick. I no longer ate regular food. I lived on 10-12 boxes of
Altoids a day. I was often dehydrated. I no longer had bowel movements.
My skin paled. The whites of my eyes turned yellow. There was nothing left
to do but take care of the problem by taking care of the problem, which was
my stomach. This meant a Total Gastrectomy.
So, on the morning of August 15th 2008, I was quiet, but apprehensive as I
awaited my 4-hour open stomach surgery. But I remember the ice-cold
operating room. I remember the hygienic look of stainless steel. I
remember the mask over my nose. Breathe in. Breathe out. Breathe…and then
I remembered nothing.
Where apprehension had mounted before, now there was only a deep blackness
and blessed peacefulness. Though I awoke with a long vertical scar across
my body, and no stomach, I awoke with something new…I awoke with Hope and
the opportunity to return to a normal life.
Fifteen days later, I return home to begin the slow process of learning how
live without a stomach. Some days were pretty easy while others extremely
hard as I learned which foods I could, or could not, tolerate. But I
remained optimistic that my life would gradually gain a sense of normalcy.
And for a while it did.
Then, May 2009, my “normal” life ended. In my case, all of my
pre-gastrectomy symptoms returned and I ended up in the hospital for 12
days, being diagnosed with Colon Inertia,(which basically means my colon
does not work as it should), and Pelvic Floor Dysfunction. Though I am on a
liquid diet, I’m often dehydrated and rarely do I have a bowel movement. A
colostomy, which could be a solution, is no guarantee that my problem would
be solved, and once my colon is removed, there would be no turning back. I
am very fortunate to have a great support group of understanding family and
friends. Currently, I am awaiting a FDA approved experimental colon study.
My faith has not wavered and I believe I will one day be able return to my
former active life.
Book Mark Espionage
For those of you who are going to find yourself in a waiting room this week we've got an awareness idea you can take along with you. By now, most of us know the ins and outs of doctors offices, hospitals, radiology centers and other places where you have to sit and wait. Newer patients may not know to bring something to do along with them, or maybe a patient is an old hat and just forgot their chosen entertainment at home. Whatever the case may be, boredom is at an all time high in a waiting room. So, this is what we want you to do:
Materials
1) a book you have read and do not mind parting with
2) a bookmark with G-PACT's info on it (a template can be found here: Bookmarks or at the bottom of the post. Formating is strange but when printed all bookmarks will have the G-PACT logo)
3) a post it note saying something along the lines of "I enjoyed this book and wanted to pass it along. When you are done keep the chain going and leave it for someone else. Courtesy of www.g-pact.org"
4) Mission Impossibe theme song *
Instructions:
Place the bookmark in the book, the post it note on the book's cover and then place it on a table in a waiting room, or in a coffee shop if you are lucky enough not to be at the doctor's this week!
*Mission Impossibe theme song optional, but highly recommend. :)
Materials
1) a book you have read and do not mind parting with
2) a bookmark with G-PACT's info on it (a template can be found here: Bookmarks or at the bottom of the post. Formating is strange but when printed all bookmarks will have the G-PACT logo)
3) a post it note saying something along the lines of "I enjoyed this book and wanted to pass it along. When you are done keep the chain going and leave it for someone else. Courtesy of www.g-pact.org"
4) Mission Impossibe theme song *
Instructions:
Place the bookmark in the book, the post it note on the book's cover and then place it on a table in a waiting room, or in a coffee shop if you are lucky enough not to be at the doctor's this week!
*Mission Impossibe theme song optional, but highly recommend. :)
Saturday, August 20, 2011
Running on Empty - Awareness Week Blog by Penny Rorrer
You know how it is, you are running late for something and though your gas gauge on your car reads empty you push it because you don’t have time to stop and fill the tank… after all even though the gauge ‘says’ it is empty it is not really empty, there is always some gas in there and you are willing to take the risk to get things done.
The next thing you know your car gives a lurch… was that a stall?
Oh, come on… just a few more miles…
You find yourself trying to make deals with your car, trying to reason with it, making bargains.
“Come on, just a few more miles…” you say as you pat the dashboard, “I will fill you up after I am done and even go through the car wash if you make it just a few more miles.”
This is what it is like to live with a body with an empty tank as well.
Think about it… what is the body’s fuel tank?
Your stomach!
What would happen to you could not fill your tank with food, or if you had to put what everyone else considers low quality food in it because that was the only thing your engine could work with or you had a clogged fuel line and the fuel you put in could not get from the tank to your body?
This is what living with Digestive Tract Paralysis is like.
We can’t eat full meals to fill our stomachs because of nerve damage in our digestive tract and that means that we are always running on low fuel.
The food we can eat is not the healthy choices that nutritionists recommend… fresh fruits and vegetables are good for you because they are full of fiber and packed with nutrients. Your stomach must work hard to break down these foods to extract the nutrients, but if your stomach is weak I cannot grind the food to set those and release those nutrients. Instead those foods sit in your ‘tank’ for hours on end because even thoroughly chewed foods are mini clogs at the base of the stomach. This means that bacteria present on all foods (no matter how well washed) have time to multiply and they in turn break down the food their own way creating gas and toxins so no matter how fresh the food is going in it is rotting in your stomach’s heat. Then those little clogs try to pass out of the stomach and it is a tight fit, so they cause pain as they pass, or your stomach protests the pain and increasing pressure and you vomit it back up.
It is not a fun way to live, but you have no choice in the matter because even if you use a lower grade food (over processed foods, the arch nemesis of nutritionists) knowing that your body will be able to extract any nutrients available easier the fuel might have changed but the engine is still the same and you will still feel the effects of your broken digestive tract… with the added benefit of less nutrition from the foods you are able to eat.
This means that you will always be running on empty, your body’s engine always starving for just a little more fuel than you can take in and it will break down.
It is not a matter of ‘if’ but a matter of ‘when’ and how often it happens.
You can try to bargain with it… try to beg it to just make it through another hour or let you see your child’s play or make a family get-together, but like a car running on fumes you will be stranded by it, often when you needed it most.
People who do not suffer from Digestive Tract Paralysis just cannot understand what it is like… after all, what is more natural than eating?
I heard a quote on the “Food Network” on TV the other night that really struck a chord “Eating is the one great unifier of the world, the one thing we all have in common, it is what unites us”.
“No,” I thought, “it is not.”
The next thing you know your car gives a lurch… was that a stall?
Oh, come on… just a few more miles…
You find yourself trying to make deals with your car, trying to reason with it, making bargains.
“Come on, just a few more miles…” you say as you pat the dashboard, “I will fill you up after I am done and even go through the car wash if you make it just a few more miles.”
This is what it is like to live with a body with an empty tank as well.
Think about it… what is the body’s fuel tank?
Your stomach!
What would happen to you could not fill your tank with food, or if you had to put what everyone else considers low quality food in it because that was the only thing your engine could work with or you had a clogged fuel line and the fuel you put in could not get from the tank to your body?
This is what living with Digestive Tract Paralysis is like.
We can’t eat full meals to fill our stomachs because of nerve damage in our digestive tract and that means that we are always running on low fuel.
The food we can eat is not the healthy choices that nutritionists recommend… fresh fruits and vegetables are good for you because they are full of fiber and packed with nutrients. Your stomach must work hard to break down these foods to extract the nutrients, but if your stomach is weak I cannot grind the food to set those and release those nutrients. Instead those foods sit in your ‘tank’ for hours on end because even thoroughly chewed foods are mini clogs at the base of the stomach. This means that bacteria present on all foods (no matter how well washed) have time to multiply and they in turn break down the food their own way creating gas and toxins so no matter how fresh the food is going in it is rotting in your stomach’s heat. Then those little clogs try to pass out of the stomach and it is a tight fit, so they cause pain as they pass, or your stomach protests the pain and increasing pressure and you vomit it back up.
It is not a fun way to live, but you have no choice in the matter because even if you use a lower grade food (over processed foods, the arch nemesis of nutritionists) knowing that your body will be able to extract any nutrients available easier the fuel might have changed but the engine is still the same and you will still feel the effects of your broken digestive tract… with the added benefit of less nutrition from the foods you are able to eat.
This means that you will always be running on empty, your body’s engine always starving for just a little more fuel than you can take in and it will break down.
It is not a matter of ‘if’ but a matter of ‘when’ and how often it happens.
You can try to bargain with it… try to beg it to just make it through another hour or let you see your child’s play or make a family get-together, but like a car running on fumes you will be stranded by it, often when you needed it most.
People who do not suffer from Digestive Tract Paralysis just cannot understand what it is like… after all, what is more natural than eating?
I heard a quote on the “Food Network” on TV the other night that really struck a chord “Eating is the one great unifier of the world, the one thing we all have in common, it is what unites us”.
“No,” I thought, “it is not.”
You'll Never Know-Awareness Week Blog by Brittney Riley
My sister will tell you I have a serious issue with boredom. Pathological even. I can't stand having nothing to do. I think I've been this way since the first cell division I managed to accomplish inside my Mother's womb. When I'd get bored I'd just divide again. I got bored of that after awhile though so two months before I was due my Mom went into labor. I wanted out. Thankfully they managed to sweet talk me into staying, but that just meant I had to channel my energy into another activity which turned out to be practicing my martial arts skills. My mother swore she was going to kick me back once I was born! These days I have very little free time to get bored. Between my studies and my position as G-PACT's PR director I've almost always have something to do. The fact that I'm always battling my gastrointestinal tract, along with other malfunctioning organ systems, just adds an extra flavor to my daily life.
As you can imagine veterinary school is demanding both mentally and physically. The first two and a half years I was required to take 20+ credit hours a semester. I was at a disadvantage first year because I couldn't spend extra time in anatomy lab. My classmates would go in to lab for 4+ extra hours a week to review anatomy. By the time I got done with that days classes I had a finite amount of energy to study for my other courses (physiology, histoloy, etc) before I was too exhausted to function. So, what did I do? I used our lecture power point slide shows and supplemental slide sets of labeled photos to study. I had no sense of the 3D aspect of things, but I could learn landmarks. I did this and made sure to make the best use of my time in lab. The funny thing is, I managed to pull off better lab grades then some of my classmates that got to review hands on. The moral to that story is along the lines of the old saying--"where there is a will, there is a way."
These days I'm on rotations. Right now I'm on my public heath rotation so I've got it easy. It is a 9-4 kind of rotation with a one hour lunch break. It is pretty demanding physically though, so I get home exhausted wanting nothing more than to take a long nap that extends until my alarm clock goes off the next morning. My goal for what is my last year of veterinary school is to learn everything I can and not kill myself doing it. That is why I made the decision to extend my 4th year so it is about 1.5 years long giving myself ample time to rest during off weeks, and wiggle room if I'd get extremely ill (which it would take for me to not complete a rotation, my best friend in high school joked I'd come to school even if I had lost an arm the night before).
So what does this have to do with boredom? Well, with no coursework there is little studying I have to do in the evenings so I've got ample free time on my hands. I think it is a blessing that I was able to take on the role of PR director for G-PACT. It is a lot of work, but it is fun. I never get bored, I always have something to work on. Best of all, when I'm too tired to sit up I can lay in bed with my laptop and get a lot of work done since most of our work is through the Internet. It is the perfect volunteer job for me. I feel like I am making a difference in other people's lives, and I don't die of boredom.
While I was rambling on, I hope I got across the idea that despite what you are dealing with there is a way to get around the road blocks put in front of you. Find a volunteer position you can do over the Internet if you aren't abe to get out of the house for long periods of time. G-PACT is full of these kinds of tasks but there are others.
To get you started you can try searching for the perfect one here:
United States Virtual Volunteer Opportunities
You'll never know what you can do if you don't try.
As you can imagine veterinary school is demanding both mentally and physically. The first two and a half years I was required to take 20+ credit hours a semester. I was at a disadvantage first year because I couldn't spend extra time in anatomy lab. My classmates would go in to lab for 4+ extra hours a week to review anatomy. By the time I got done with that days classes I had a finite amount of energy to study for my other courses (physiology, histoloy, etc) before I was too exhausted to function. So, what did I do? I used our lecture power point slide shows and supplemental slide sets of labeled photos to study. I had no sense of the 3D aspect of things, but I could learn landmarks. I did this and made sure to make the best use of my time in lab. The funny thing is, I managed to pull off better lab grades then some of my classmates that got to review hands on. The moral to that story is along the lines of the old saying--"where there is a will, there is a way."
These days I'm on rotations. Right now I'm on my public heath rotation so I've got it easy. It is a 9-4 kind of rotation with a one hour lunch break. It is pretty demanding physically though, so I get home exhausted wanting nothing more than to take a long nap that extends until my alarm clock goes off the next morning. My goal for what is my last year of veterinary school is to learn everything I can and not kill myself doing it. That is why I made the decision to extend my 4th year so it is about 1.5 years long giving myself ample time to rest during off weeks, and wiggle room if I'd get extremely ill (which it would take for me to not complete a rotation, my best friend in high school joked I'd come to school even if I had lost an arm the night before).
So what does this have to do with boredom? Well, with no coursework there is little studying I have to do in the evenings so I've got ample free time on my hands. I think it is a blessing that I was able to take on the role of PR director for G-PACT. It is a lot of work, but it is fun. I never get bored, I always have something to work on. Best of all, when I'm too tired to sit up I can lay in bed with my laptop and get a lot of work done since most of our work is through the Internet. It is the perfect volunteer job for me. I feel like I am making a difference in other people's lives, and I don't die of boredom.
While I was rambling on, I hope I got across the idea that despite what you are dealing with there is a way to get around the road blocks put in front of you. Find a volunteer position you can do over the Internet if you aren't abe to get out of the house for long periods of time. G-PACT is full of these kinds of tasks but there are others.
To get you started you can try searching for the perfect one here:
United States Virtual Volunteer Opportunities
You can do what you want in life, you just gotta get creative!!
 |
| Removing a bandage from a red-tailed hawk's wing at Raptor Recovery Nebraska during my 2nd year of veterinary school |
You'll never know what you can do if you don't try.
Friday, August 19, 2011
I want a beer! Awareness Week blog by Sarah McFeggan
My name is Sarah, I am 37 years old, and I was diagnosed with gastroparesis in the fall of 2008. My stomach shut down on me about a few days after I stopped taking antibiotics for pneumonia in May of 2008. It seemed like it took FOREVER for my doctors to figure out what was going on. I couldn't eat and I couldn't sleep due to horrible reflux, bloating and nausea. I lost 15 pounds in two months and I carried liquid Maalox around with me everywhere. I started to call it my "boyfriend". I was finally put on an acid reducer and it helped with the reflux but I could still not eat a lot. Then I had that fun stomach emptying test done and was told that I had gastroparesis. I was also told to look it up online and that we could look into a stomach pacemaker......What??? So, I went home and looked it up online. The first website I found gave me some hope that I would get better. The second website, not so much. It scared the crap out of me! How could there not be a pill that fixed this and how could doctors know so little about it? Luckily, I found a couple of groups online started by others who have GP or other gastrointestinal issues. I was shocked at how many people had been diagnosed with GP. I had NEVER heard of it before I was diagnosed with it. Through these groups I was able to find out more information and resources about diet and nutrition. I figured out through trial and error (lots of errors) what I could tolerate and what I could not. The "could not" list was much longer. I wasn't able to go out and socialize with my friends and family like I used to and going out to eat was torturous. Things have slowly gotten better but I'm still impacted by GP on a daily basis. There is not a day that goes by since I was diagnosed where I don't think about when I can eat, what I can eat, am I getting enough calories, am I starving myself, am I hungry, am I bloated, is my reflux worse..... This has done WONDERS for my anxiety. Which is what my doctor blamed it on initially (I'm rolling my eyes). Thankfully, my close family and friends have been supportive and understanding. It breaks my heart to read about how others family and friends do not support them or believe them. Hi - if we could eat - WE WOULD EAT! I just want a beer, frankly.....At least my friends let me smell theirs ;)
I want a beer! Awareness Week blog by Sarah McFeggan
My name is Sarah, I am 37 years old, and I was diagnosed with gastroparesis in the fall of 2008. My stomach shut down on me about a few days after I stopped taking antibiotics for pneumonia in May of 2008. It seemed like it took FOREVER for my doctors to figure out what was going on. I couldn't eat and I couldn't sleep due to horrible reflux, bloating, and nausea. I lost 15 pounds in two months and I carried liquid Maalox around with me everywhere. I started to call it my "boyfriend". I was finally put on an acid reducer and it helped with the reflux but I could still not eat a lot. Then I had that fun stomach emptying test done and was told that I had gastroparesis. I was also told to look it up online and that we could look into a stomach pacemaker...... What???? So, I went home and looked it up online. The first website I found gave me some hope that I would get better. The second website, not so much. It scared the crap out of me! How could there not be a pill that fixed this and how could doctors know so little about it?? Luckily, I found a couple of groups online started by others who have GP or other gastrointestinal issues. I was shocked at how many people had been diagnosed with GP. I had NEVER heard of it before I was diagnosed with it. Through these groups I was able to find out more information and resources about diet and nutrition. I had figured out through trial and error (lots of errors) what I could tolerate and what I could not. The "could not" list was much longer. I wasn't able to go out and socialize with my friends and family like I used to and going out to eat was torturous. Things have slowly gotten better but I'm still impacted by GP on a daily basis. There is not a day that goes by since I was diagnosed where I don't think about when I can eat, what I can eat, am I getting enough calories, am I starving myself, am I hungry, am I bloated, is my reflux worse..... This has done WONDERS for my anxiety. Which is what my doctor blamed it on initially (I'm rolling my eyes). Thankfully, my close family and friends have been supportive and understanding. It breaks my heart to read about how others family and/or friends do not support them or believe them. Hi- if we could eat- WE WOULD EAT! I just want a beer, frankly........... At least my friends let me smell theirs. ;)
Thursday, August 18, 2011
Post-It Note Blitz
Post-It Note Blitz
If you are like me you are a bit timid and aren't prone to breaking out in lecture (or song if you are creative) about DTP in front of strangers. You like your privacy, but you feel that the public needs to know more about the diseases impact on the lives of patients around the world. So, what is a timid advocate to do? Well, look through your junk drawer or if you organized find your post it note pad and get to work. Write a short sentence about DTP and stick in a place visited frequently by other people. Ideas include public bathroom, on the back of a seat on the bus, on a table in a coffee shop, on the shelf below some baby food in the grocery store or on the scale in the produce department. Some place a person will see it. If you put it in the produce department you could write something about not being able to eat a the 3-5 servings of fruits and vegetables recommended. Baby food section? How about "how expensive do you think it is to buy enough baby food to feed an adult?" You get the hint, right?
So, what are you action steps?
1) Gather post-it notes, pens, and ideas
2) Place them in various locations
You can do this everyday during DTP Awareness Week. Heck, you can do it everyday of the year if you want!
If you are like me you are a bit timid and aren't prone to breaking out in lecture (or song if you are creative) about DTP in front of strangers. You like your privacy, but you feel that the public needs to know more about the diseases impact on the lives of patients around the world. So, what is a timid advocate to do? Well, look through your junk drawer or if you organized find your post it note pad and get to work. Write a short sentence about DTP and stick in a place visited frequently by other people. Ideas include public bathroom, on the back of a seat on the bus, on a table in a coffee shop, on the shelf below some baby food in the grocery store or on the scale in the produce department. Some place a person will see it. If you put it in the produce department you could write something about not being able to eat a the 3-5 servings of fruits and vegetables recommended. Baby food section? How about "how expensive do you think it is to buy enough baby food to feed an adult?" You get the hint, right?
So, what are you action steps?
1) Gather post-it notes, pens, and ideas
2) Place them in various locations
You can do this everyday during DTP Awareness Week. Heck, you can do it everyday of the year if you want!
Friday, June 17, 2011
Why I love G-PACT and what continues to drive me
I get overwhelmed sometimes with how big G-PACT is. There is always so much to do! Sometimes I wonder if I can keep doing it at this level, especially as my health seems to be deteriorating in so many ways. This week I have been blessed. I have seen how much it is needed and how much people want to contribute to our success and help us out. You guys rock! We have over 20 fabulous "official" vols (been through application process, vote on issues, contribute to ideas and growth, on the "inside" of projects, help with direction of the organization, and planning), but so many "non-official" volunteers keep asking to contribute to short-term projects to help us out too. I feel so much less pressure now than a few days ago!
You know what's really cool? When I realize that we are the resource for people across the world, not just the US. So many have requested branches in the UK, Canada, Australia & other international areas. The founders had no idea it would ever reach out so far! Although we can't possibly take on other countries at this time because the US is big enough, we hope our efforts here will impact other countries and that eventually branches of G-PACT or other DTP organizations will pop up internationally.
I really miss our former VP and a co-founder, Veronica Pennington, who was like a sister to me and passed in 2006. I wish she could see how far we have come. She poured her heart into G-PACT for her son, Nicholas, who developed GP on his first birthday after a Nissen Fundoplication. I fight for G-PACT, in large part, on behalf of Veronica. I know she would never stop fighting for G-PACT regardless of how overwhelming or challenging it can become.
So many have come together without knowing each other to pull G-PACT off. This is all because of one common connection. Some of us have never even met in person, but have been working together for years. It's just really cool. When I get overwhelmed, I just think about that and it drives me to keep fighting when our efforts so often just seem to hit brick walls and glass ceilings.
The team really does have a heart for u guys. We couldn't do this otherwise. Always remember that! There is no monetary pay in what we do and we get no kickbacks. The rewards of helping you all and the stories we hear is better than any of that. G-PACT FTC!
Thank YOU for giving back to us and allowing us into your lives to help in any way we can. We realize this is a tough battle. A cure is a ways off, better treatment options are slow, but it is our goal that we can make life with DTP easier and more manageable for everyone affected through our work until the cure is discovered.
Love and thanks,
Carissa
You know what's really cool? When I realize that we are the resource for people across the world, not just the US. So many have requested branches in the UK, Canada, Australia & other international areas. The founders had no idea it would ever reach out so far! Although we can't possibly take on other countries at this time because the US is big enough, we hope our efforts here will impact other countries and that eventually branches of G-PACT or other DTP organizations will pop up internationally.
I really miss our former VP and a co-founder, Veronica Pennington, who was like a sister to me and passed in 2006. I wish she could see how far we have come. She poured her heart into G-PACT for her son, Nicholas, who developed GP on his first birthday after a Nissen Fundoplication. I fight for G-PACT, in large part, on behalf of Veronica. I know she would never stop fighting for G-PACT regardless of how overwhelming or challenging it can become.
So many have come together without knowing each other to pull G-PACT off. This is all because of one common connection. Some of us have never even met in person, but have been working together for years. It's just really cool. When I get overwhelmed, I just think about that and it drives me to keep fighting when our efforts so often just seem to hit brick walls and glass ceilings.
The team really does have a heart for u guys. We couldn't do this otherwise. Always remember that! There is no monetary pay in what we do and we get no kickbacks. The rewards of helping you all and the stories we hear is better than any of that. G-PACT FTC!
Thank YOU for giving back to us and allowing us into your lives to help in any way we can. We realize this is a tough battle. A cure is a ways off, better treatment options are slow, but it is our goal that we can make life with DTP easier and more manageable for everyone affected through our work until the cure is discovered.
Love and thanks,
Carissa
Tuesday, March 15, 2011
The one you don't really know, yet accused- invisible illness
The one you called lazy has been up all night sick & fought to get out of bed just to make it through the doors to work or school.
The one you say is attention seeking because they use a medical device or parked in HP spot & doesn't "look" sick considered leaving that device at home, just to appear normal, but would be putting health and comfort at risk.
The one who went to the bathroom after eating only a few bites that you accused of having an ED has a paralyzed GI tract (Gatroparesis and Chronic intestinal pseudo-obstruction) & can't keep food down.
The one you judged & shut up for being honest when you asked how they felt just needed someone they thought cared to open up with. Don't ask if you don't really want to know.
The one you cut out of your life because they can't spend as much social time with you and missed your party or wedding has been fighting just to make it through a single day & accomplish basic daily tasks and chores. Why not visit THEM for once and plan an activity they can participate in?
The one you used to love & cut out of your life because they are not the same has an invisible illness & needs to be understood. Listen to their story. If you don't believe them, talk to others who are in the same shoes. So many people with the same stories aren't making this stuff up! Plus, look at the medical test results and description of what their diagnosis can do!
The one who didn't buy you a nice gift in return for a nice gift you gave them is on disability, has high medical expenses & is just trying to keep from going into debt from medical bills and general living expenses alone.
The one you accused of being depressed and not physically caring for themselves had to lay down five times in between bathing, dressing, taking meds, and doing simple "get ready to go out" tasks. They may have had to shower the day before simply to be able to get up and go the next day.They may have been up for two-three hours just preparing to go out and be somewhat presentable. They are just TIRED from simply doing that and may not feel very social!
The one you gossiped about for not dressing as appropriately as necessary may not be able to wear "normal" clothes. They may have a paralyzed gut that holds food in, making them bloated and they need to wear comfortable clothes. Their hair may be falling out from poor nutrition and they may need that scarf or hat to hide bald spots. They may have pain from osteoporosis, neuropathy, auto-immune disorders, and need to wear comfortable shoes.
The one you accused of being self-focused and not caring about you is dealing with so many overwhelming pressures and fears themselves that sometimes they just can't give back what you expect or want. But they DO care about you too.
People with invisible illnesses need your support & need to feel included. They need to be treated normally, but also need to know you are there for them if they need you. Don't think of them as being lazy, attention seeking, making things up, self-centered, or not caring about you & YOUR needs too. Your accusations only make their situations worse and harder to manage.
The one you say is attention seeking because they use a medical device or parked in HP spot & doesn't "look" sick considered leaving that device at home, just to appear normal, but would be putting health and comfort at risk.
The one who went to the bathroom after eating only a few bites that you accused of having an ED has a paralyzed GI tract (Gatroparesis and Chronic intestinal pseudo-obstruction) & can't keep food down.
The one you judged & shut up for being honest when you asked how they felt just needed someone they thought cared to open up with. Don't ask if you don't really want to know.
The one you cut out of your life because they can't spend as much social time with you and missed your party or wedding has been fighting just to make it through a single day & accomplish basic daily tasks and chores. Why not visit THEM for once and plan an activity they can participate in?
The one you used to love & cut out of your life because they are not the same has an invisible illness & needs to be understood. Listen to their story. If you don't believe them, talk to others who are in the same shoes. So many people with the same stories aren't making this stuff up! Plus, look at the medical test results and description of what their diagnosis can do!
The one who didn't buy you a nice gift in return for a nice gift you gave them is on disability, has high medical expenses & is just trying to keep from going into debt from medical bills and general living expenses alone.
The one you accused of being depressed and not physically caring for themselves had to lay down five times in between bathing, dressing, taking meds, and doing simple "get ready to go out" tasks. They may have had to shower the day before simply to be able to get up and go the next day.They may have been up for two-three hours just preparing to go out and be somewhat presentable. They are just TIRED from simply doing that and may not feel very social!
The one you gossiped about for not dressing as appropriately as necessary may not be able to wear "normal" clothes. They may have a paralyzed gut that holds food in, making them bloated and they need to wear comfortable clothes. Their hair may be falling out from poor nutrition and they may need that scarf or hat to hide bald spots. They may have pain from osteoporosis, neuropathy, auto-immune disorders, and need to wear comfortable shoes.
The one you accused of being self-focused and not caring about you is dealing with so many overwhelming pressures and fears themselves that sometimes they just can't give back what you expect or want. But they DO care about you too.
People with invisible illnesses need your support & need to feel included. They need to be treated normally, but also need to know you are there for them if they need you. Don't think of them as being lazy, attention seeking, making things up, self-centered, or not caring about you & YOUR needs too. Your accusations only make their situations worse and harder to manage.
Thursday, January 6, 2011
Researching your own condition- Heal Thyself!
Author: Penny Rorrer, DTP Patient
Have you ever seen the movie "Lorenzo's Oil"?
It is a true story about a young boy names Lorenzo Odone who had a rare condition called "adrenoleukodystrophy (ALD)", a disease that had no cure, no treatment and was horrifically fatal.
His parents REFUSED to accept that, so they researched the condition, they searched into WHY their son had a demylinating disease, what was causing it and what could be done. They did not just take the 'experts' word for it, they asked questions and basically taught themselves how to be bioengineers to save their son. They found the missing protein chain in the rapeseed, searched for a researcher willing to extract it and refine it... and not only saved their son but children around the world. They did not find a cure, but they found a treatment that worked!
We should not sit idly by and wait for some researcher with no personal stake in our future to decide if it is worth it to comb through all the information available on DTP conditions and hope that one day they will run into each other at a conference or Starbucks and compare notes.
We need to gather all the information FOR them...we need to do the surveys FOR them... we need to collect all the information we can, compile it, make links and connections that they might have missed and find a researcher that is willing to look at all the information we compile and see if there is SOMETHING that is a major factor... an "ah-hah" moment... our rapeseed.
Will it be easy... no way!
But someone has to start the battle, someone has to gather the troops and say "we are at war and we have to get all our Generals together or we will never win!"
The truce is over... Idiopathic is NOT a diagnosis, it is a cop-out! "We do not know what causes it, so lets try this to treat it" is a crime. You would never allow a mechanic to tell you "I don't know why your car keeps breaking down, lets just keep putting this $500 oil into it and hope for the best, and if that does not work we can always try another $500 oil"! No, we would demand a repair for our money...why should we expect less for our bodies?
Search the Internet... find every paper submitted to medical journals, every report of medical trials, every document you can...share them with others and compare them. Somewhere out there is OUR rapeseed... become your own physician, then "physician, heal thyself".
Have you ever seen the movie "Lorenzo's Oil"?
It is a true story about a young boy names Lorenzo Odone who had a rare condition called "adrenoleukodystrophy (ALD)", a disease that had no cure, no treatment and was horrifically fatal.
His parents REFUSED to accept that, so they researched the condition, they searched into WHY their son had a demylinating disease, what was causing it and what could be done. They did not just take the 'experts' word for it, they asked questions and basically taught themselves how to be bioengineers to save their son. They found the missing protein chain in the rapeseed, searched for a researcher willing to extract it and refine it... and not only saved their son but children around the world. They did not find a cure, but they found a treatment that worked!
We should not sit idly by and wait for some researcher with no personal stake in our future to decide if it is worth it to comb through all the information available on DTP conditions and hope that one day they will run into each other at a conference or Starbucks and compare notes.
We need to gather all the information FOR them...we need to do the surveys FOR them... we need to collect all the information we can, compile it, make links and connections that they might have missed and find a researcher that is willing to look at all the information we compile and see if there is SOMETHING that is a major factor... an "ah-hah" moment... our rapeseed.
Will it be easy... no way!
But someone has to start the battle, someone has to gather the troops and say "we are at war and we have to get all our Generals together or we will never win!"
The truce is over... Idiopathic is NOT a diagnosis, it is a cop-out! "We do not know what causes it, so lets try this to treat it" is a crime. You would never allow a mechanic to tell you "I don't know why your car keeps breaking down, lets just keep putting this $500 oil into it and hope for the best, and if that does not work we can always try another $500 oil"! No, we would demand a repair for our money...why should we expect less for our bodies?
Search the Internet... find every paper submitted to medical journals, every report of medical trials, every document you can...share them with others and compare them. Somewhere out there is OUR rapeseed... become your own physician, then "physician, heal thyself".
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