Another Sleepless Night & Another New Symptom

I am so exhausted.

I can't sleep and all I can do is to curl up in a ball and whimper. The pain hurts. It's one huge spasm after another and the vomiting makes the pain worse. I'm pretty sure I pulled a muscle in my back vomiting this last time.

My fraternity's local alumni association had a holiday get together today. My husband is deeply involved in this organization and he's been here to support me, so I wanted to be there today to support him. The holiday get together was at a local soul food restaurant. Now, just the smell or image of food had me gagging this week, but I was determined that I was going to get through this lunch. I felt like I was marching to an execution and praying I didn't get sick at the restaurant. I took all of my medicine before I got into the car which includes Bentyl, Levsin, Zofran, Phenergan, Zanaflex, and my vitamins I've started taking. I added a multivitamin to the mix along with Vitamin B, because that was recommended to help my new symptoms of confusion. I've also been trying to add more potassium to my "diet."

I was quite proud of myself. I didn't get sick in the car and when I walked into the restaurant, the smell didn't knock me out like I thought it was going to. I managed to make myself eat a teaspoonful of dressing, two teaspoonsful of lima beans, and a few bites of banana pudding. After that, I was full. Also, a new symptom developed. Right after I ate, my belly started to swell. It looked like I was pregnant or that I had a balloon under my shirt. It was very uncomfortable and full of cramps. I actually had to change my pants later because they were too tight after I ate.

I managed to last the entire lunch without vomiting several times. I had to leave and get some air towards the end of lunch because the smells were making me extremely nauseated.

After getting into the car, the nausea became worse. Nothing helped. Not looking outside, not counting trees, not trying to relax, nothing. My stomach felt like someone was banging on it with a hammer. It was this intense, throbbing, sharp pain. It continued to do this until I got home. The spasms started happening and then I started vomiting. At least I had something in my stomach to vomit up, so it wasn't just stomach acid. My throat is still rather swollen from previous vomiting and it probably sounds and looks like I have strep throat.

I was up all last night vomiting and now I've been up all tonight vomiting. One of my friends said something, probably not meaning to be offensive but it came out that way, and I finally just broke down and cried. I sat there and cried for a good two hours. My wonderful husband, who lost his father this week, sat there and held me while I cried. He didn't ask what was wrong, he just stroked my hair. I felt so guilty because I feel like I should be comforting him, you know?

After crying, I vomited again. At this point, I left my bedroom to come upstairs to watch TV. I don't want to wake my husband up and my stomach isn't going to let me sleep anytime soon.

I managed to read all of, Gastroparesis: My Personal Journey and realized that I have the same symptoms. This isn't in my head. I can't tell you how many doctors have told me that the sickness is in my head and nothing more. I've had several friends remark about how strong I am but I don't feel strong. Then, I read something like this book and what this woman went through and it motivates me to be an advocate for myself.

I'm going to stick with facts and what I do know. I know that I vomit 6 to 8 times a day. I know that I'm dehydrated. I know that I'm still technically overweight but I've lost about 25 pounds since I was diagnosed. I've dropped a bra size and pants size. I can put two photos of me side by side from this year and last year and you can see that my face has thinned out considerably. I know that I look sick and that my skin is a weird pasty color. I know that if I make myself eat, even small and frequent meals (liquids), I will vomit.

I know that I can't leave the house without a a bucket of some sort to vomit in. I know that I have a year of college left and I'm not sure how I'm going to go to labs. I know my GI doctor doesn't know what to do for me at this point so he's referring me to the Mayo clinic. I know that I have mental confusion, depression, and my stomach becomes really swollen if I do manage to eat something. It doesn't matter what I eat, it all comes up. Liquids, solids, gluten free, gluten, etc. I've tried all of the different diets. I know that I'm scared (and I have a suspicion that I have an autoimmune disease at the heart of this problem - but I don't know what I've been tested for).

I also know that I am determined. I know that other GP fighters suffer worse than I do. I know I have loving family and friends who support me, even when I post six million times a day on Facebook to keep myself distracted. I appreciate all of the help my husband has given me and his support. Without him, I'm not sure I could do this. I know that I've found a wonderful support group online that has helped me so much with venting and answering most of my gastroparesis questions. Also, it makes me feel better to know that I'm not the only one.

I know that I'm going to keep fighting.

Planned Giving: Using e-Bay to G-PACT’s Advantage

If it sounds a bit far fetched to use the most popular Internet auction site to benefit G-PACT, you'll want to read on a bit further to understand the true potential. Consider this for starters: eBay has raised $300,000 for non-profits so far.

eBay, the online auction company, now allows its 69 million individual and corporate customers to assign all or part of their online proceeds to GPACT. It's really quite simple. If you are a regular buyer or a seller on eBay and already have an eBay user name and password, you'll want to take just a minute to register with MissionFish, eBay's charity solution provider at http://www.missionfish.org

If you've never shopped or sold items on eBay, it takes less than a minute to register and set up your account using the same MissionFish link above.

Once registered with MissionFish, you can search for items currently on auction that are scheduled to benefit G-PACT and bid on these items yourself. You can also list items to sell designating G-PACT to receive anywhere from 10% to 100% of the proceeds from each item auctioned.

If you've been contemplating a garage sale or have items of value you feel would do particularly well on eBay, please consider helping out G-PACT as you shop and sell. On eBay, you can sell or buy just about anything from a high school yearbook to real estate.

eBay may be the largest online charitable retailer, but it is not the only one. If you shop online, you can also designate G-PACT as a recipient of up to 35% of the cost of items purchased at www.goodshop.com or www.buyforcharity.com.

When you make a gift of this type or any other to G-PACT, you will promptly receive a thank you acknowledgement letter with the charitable amount of your gift to use for tax purposes and you can help spread awareness about this disease with no cure. =)

My Weird Symptoms Today

Today, I'm feeling a bit off. I was up almost all night vomiting again and my throat is really swollen from vomiting. I can't even swallow a cracker, so my husband gave me a bottle of sore throat spray so that I could at least try some yogurt. It's somewhat hard to swallow now but at least I'm able to talk.

My symptoms today are unusual and I wonder if it's because I haven't been sleeping or the lack of food. I woke up from a short nightmare to a panic attack. I talked myself down out of it and tried to control my breathing. I felt like I was drowning. There was so much pressure on my chest.

When that was over, I felt extremely nauseated. It's always worse in the mornings but this was worse than I've felt in a long time. It is almost like the vomit is stuck in the middle of my throat, burning it more. It's not coming up and it's not going down. Eventually, I swallow it down. But, even with the Zofran and Phenergan, I'm still really, REALLY nauseous.

My skin has also been clammy and sweaty today and I keep sweating. I've had to change my shirt twice. It's a cold sweat though, so when I take a shower and get out, I'm still cold. Also, I'm running a low fever (that goes away with Tylenol or Ibuprofen) and I ache everywhere, mostly to the left of my right shoulder blade. I guess I may have jerked wrong during my nightmare... but I'm not sure. I guess it's possible that I could have pulled a muscle vomiting, too.

I also have confusion and loss of time, which I've had in the past, the night before my first 8 day hospital admission. The confusion part bothers me. I don't remember doing certain things and I get distracted a lot easier than I used to, and I get confused easily. It makes me feel stupid. I also do things that I know better than doing but do it anyway and then forget about it, like posting stupid things on Facebook. It's strange. I know that's probably not a symptom but I thought it was urgent enough to be mentioned.

Additionally, I lose track of days and track of time. I had to buy a pill box with the times on it so that I wouldn't double dose on medication, trying to remember if I took it or not.

I have absolutely no appetite today, whatsoever. The image of food makes me ill but I know I need to eat something. I have to make myself eat, which is the hard part. The last three days, I've eaten smaller meals (usually yogurt) five to six times a day. It's really, really hard to eat so frequently but I am trying to make an effort. Also, I've started walking after eating. I want to feel better but I just feel so miserable right now.

My fraternity brothers are coming over tonight to watch a movie with me and keep me company. I really could use the distraction. It's been a long week and the week still isn't over. We're going to either watch a sci fi/ fantasy movie, or a comedy, or both. We haven't decided yet.

Sometimes I Just Want to Give Up

Today has been really challenging and it was a bucket kind of day. I was vomiting all day today to the point where my throat is burnt, worse than before. I started running a fever today and I feel all achy, kind of like you get before you get the flu. I had a flu shot. If this is a stomach virus, I will curl up into a ball and sob. I can't handle being back in the hospital right now. My stomach keeps spasming and I have a pain in my upper left side. It almost feels like I've been sucker punched. It's like one huge knot in my stomach that won't uncurl.

My doctor is still working on my referral to the Mayo Clinic. I hope something is done for this soon. It's hard to keep my anti-nausea medications down. I want to finish college and I don't want to travel with a bucket anymore. I can't be around certain friends because if I start vomiting, they will too. I feel like I'm left out of almost everything because of my illness. I'm being ignored by friends. No one comes over to my house anymore to keep me company because it's not close to MARTA (the public transportation here). It's just depressing to be shunned, even though that's not their intention. But, still, it hurts.

I'm trying to hang on to the positive but it seems like the negative keeps out weighing it. This is just a lonely road. People keep telling me I'm strong but I don't feel strong. I miss being social and I miss my friends. I've made some really great ones on the Gastroparesis community page on Facebook. They've given me some great advice. It's just hard to stay optimistic all of the time when you're always bent over the toilet or a bucket.

I guess I'm just full of self pity tonight. I loved when people came over to hang out with me, it would distract me. I really could use the distraction.

I just don't know what to do anymore. I'm feeling so sick and I'm so frustrated by being so sick and not being able to do the things I love to do. I wish I could just get rid of the pain and constant vomiting ... but the sad thing is, I know people have this worse than I do. That makes me feels selfish that I'm whining so much.

My First Thanksgiving with Gastroparesis

After sleeping for two days straight out of pure exhaustion, today was my first Thanksgiving since I was diagnosed with Gastroparesis in March. I've been up the past two nights all night, vomiting. I finally got to the point where I laid down on my pillow on the bathroom floor by the toilet. My husband is one amazing person and I love him so much. He stayed home with me on our 8th wedding anniversary because I was too sick to go anywhere and he brought me flowers.

I made an event for Gastroparesis Awareness today to get the word out about my disease and a lot of my friends wore green today to support those of us who cannot eat. I thought it was incredibly nice of them, especially since many of them were traveling.

This is what the Facebook invite said (with a couple of additions that I wrote),

This Thanksgiving, please say a prayer or keep the people who are unable to eat in your thoughts. My friends are wearing green today to support those who cannot eat.

Gastroparesis is a debilitating stomach disease that literally means paralysis of the stomach. One of every 62 people in the united states alone (about 5 Million Americans) have been diagnosed with Gastroparesis. Most people take for granted being able to wake up every day and sit down to a good meal. Those with Gastroparesis just can't.

Why? Because when your stomach stops working, you lose your ability to eat. Symptoms of Gastroparesis include non-stop nausea, Vomiting, severe abdominal pain and cramping, unintentional weight loss, unintentional weight gain, feeling full after eating very little, bloating, heart burn, loss of appetite, anemia, and reflux. It affects our quality of life so much that we are unable to do the things we used to love and we lose friends because some friends don't understand.

I hate being told this is all in my head when I know it's not. I miss hanging out with my friends. It feels like I'm stuck in my house on house arrest.

Imagine having the stomach flu 24/7 and it never goes away! Imagine having to starve because you physically can not eat. Everything you eat comes back up and then it feels like you have strep throat because the stomach acid has burnt your throat from vomiting too much. Also, having severe cramps after you eat and constant muscles spasms almost condition you not to eat.

Imagine being tired all of the time and dehydrated because you can't keep anything down and making monthly hospital visits for fluids and medications.

FIVE MILLION Americans are suffering and chances are you have never heard of this disease. We want to give Gastroparesis a name, a face, and a loud voice! This disease needs to be well known, well heard, and well understood. There is no cure for Gastroparesis and with out raising awareness and funding, there never will be. So we need your help.

We need the government to focus on a research for a cure for Gastroparesis. The one we had before failed. Let's see this one succeed! Spread it around like crazy because no one should starve to death. This petition I've created will bring some awareness to the disease. I'm not necessarily trying to get the government to fix it, but I would like them to be aware of this since it's an, "invisible illness." That's the tough part because people look at you and assume you're fine. They don't see the zip lock bags you keep in your purse in case you vomit in public or a bucket in the car.

You can view and sign the petition HERE. It only takes a few minutes and I could use the help. Pass this around to your friends, even my blog if you have to, just to show them how horrible this disease it and what little the doctors can do as of right this moment. I know it's not cancer but people still DIE from this disease. That's why I'm terrified to go to the Mayo Clinic. I'm scared of all of the TREATMENT OPTIONS.

Join our cause on Facebook by liking the Gastroparesis Community Page in the link below and send it to others. Feel free to share my blog with everyone because no one deserves to starve to death. We shouldn't be unnoticed, written off, or passed over by the medical community because of the limitations of research and medication. My doctor here really doesn't know how to treat me except with pain and nausea medicine, and the medicine only works when it stays down ... which is one of my problems.

GASTROPAREIS COMMUNITY ON FACEBOOK

If you are on Facebook, I recommend the Gastroparesis support group listed above. They have people who care and who understand what you're going through. I feel so at home there and I know I can ask questions without feeling embarrassed. The people there also have the most wonderful advice. It got me through to day because my vomiting is so severe, even food smells make me sick. It's nice to have a group of people who will listen and share their experiences with you.

I live in the South where food is a big part of our culture ... but right now, it's my enemy. My stomach is bloated from trying to eat sweet potatoes earlier. I need to make an appointment with the nutritionist but I'm not sure that will help because I vomit up everything.

Something has to change soon. I miss my life. I miss my friends, my brothers, my family, and date nights with my husband. I just feel so lost sometimes and I feel like I want to give up. But, I'm determined to fight until someone does research on this disease. There has to be some way to repair the nerve damage to make the my stomach muscles work again.

Thank you all for sending positive thoughts my way. I need them. I feel so awful complaining all of the time when I know people have this worse than I do. Thank you for taking the time to read my blog and to take this journey with me. It does mean a lot that I have so many caring people in my life.

I just don't know what to do about school. I'm scared to register because I'm not sure what the Mayo Clinic is going to advise yet. It may be more surgery.

**PLEASE SHARE WITH YOUR FRIENDS TO SPREAD AWARENESS**

Share this blog entry and let's all coordinate a date to wear green. Does anyone know where I can buy a green ribbon for Gastroparesis?



FACES OF GASTROPARESIS VIDEO. Be sure to look for me and my online GP friends.

GI Doctor Visit Today

I went and saw my doctor. I didn't sleep last night because I vomited ALL NIGHT LONG! Ugh. I was feeling fairly OK until I got to the waiting room. Some of the doctors were running behind and it smelled like all of the women there had bathed in cheap gas station incense before sitting down. I stood up by the door, instead of sitting down, and eventually ended up sitting in the hallway with an emesis basin until I was called back into a room.

The doctor looked over all of my notes and basically told me that he didn't know what else he could do for me. He told me that I had a Motility disorder, nothing structural wrong, which I knew. I was diagnosed with Gastroparesis in March of this year.

None of the drugs are working for me (I've been on Bentyl, Zofran, Phenergan, Levsin, Motilium, and Nortriptyline). The Motility Specialist my GI doctor sent me to said my GP wasn't severe enough for her to treat. I think she's very wrong.

So, my GI doctor is referring me to the Mayo Clinic for treatment and I'm a bit scared. I vomit 6 to 8 times a day. I stay full for days, even up to a week and a half. I never seem to have gastric emptying - it's mostly all vomited back up. He's also testing my liver enzymes again, since they're usually high.

I've had severe insomnia because I stay up most nights just throwing up. I'm exhausted and my throat is burnt. I'm not hungry and my stomach is swollen. I'm just miserable.

My question to those more experienced than myself - what can I expect from the Mayo Clinic? Do you know how long it will take to get an appointment there? What are the treatment options when the drugs are failing to work? Has anyone else had much luck controlling their gastroparesis with the Mayo Clinic?

I've found these TREATMENT OPTIONS provided by the Mayo Clinic. None of them sound fun and I'm scared to death of a feeding tube.

I'm just scared I'm never going to finish college at this point.

Post Implant Surgery & Updates

I had back surgery a week ago on Tuesday and had my staples pulled out on Tuesday of this week. I thought the staples weren't going to hurt as they were being pulled out buy I was so wrong. The doctor started removing the staples and I started crying. She asked me if she needed to stop for a minute to get myself together but I declined and told her to keep removing the staples. She said that I was a trooper and kept pulling them out. I guess my back healed over or around the staples to cause that much pain. Now, my back looks like something in The Nightmare Before Christmas.

I have to stand or sit up straight so that the implant works but it has helped control the knee pain. When I recover and my back heals completely, I am going to work myself back up to hiking because I miss it so much. That should help with the gastroparesis. I've also been chewing gum. Even though the smell and the taste of it makes me ill, I'm chewing it anyway for my digestive system.

The vomiting has cut down from 8 times a day to about 4 to 6 times. I am hoping it will continue to fall because my pain response in my knee has been corrected. My stomach still has a lot of cramping - even with the Bentyl and Levsin. I need to make an appointment with my GI doctor for more anti-nausea medicine. I wish he would just give me a year's full of refills on phenergan and zofran. I'm going to need them for a while. Does anyone else have this issue? I'm actually curious. i have to use a four columned pill box because I have so many to take. My pills could be a meal in themselves.

I need to find a primary care doctor where I live. I need to keep all of my records in one place and a PCP would be easier to get into. If you have anyone you think is amazing, just message me or write me an email.

My back is really sore since they pulled out the staples and my stomach is cramping so badly that I double over in pain. I have to ride in a car with a bucket but it's just dry heaves at this point because there is nothing in my stomach to vomit up. The acid has burned my esophagus so my voice fades in and out. It almost feels like strep. I'm on medication for acid reflux but it doesn't seem to help the vomiting. It's hard to swallow my pills.

I've also been very lethargic with almost no energy. It takes everything I have to get out of bed. It's not that I'm sleepy, I just have no energy. I know that I'm dehydrated but I've been trying to drink as much as I can.

I just don't know what to do about my stomach. I don't know how to live with this. It's hard to adjust to and my friends don't understand. Most of them don't come over anymore to hang out with me, even though they know it's hard for me to leave my house. Four or five of my friends have come over to spend a few hours with me but that's about it. I don't even get calls to makes sure I'm OK. It depresses me, especially since I am part of a fraternity. I know people are busy and I'm just wallowing in self pity. But sometimes, you just need that extra boost of confidence from your friends, you know? I wish I could make them understand what I am going through. I mean, I know that I'm sick but they scheduled events and then don't invite me to them or tell me about them. It hurts. I just feel so isolated. My house used to be the hot spot but not anymore.

So, I'm up at 4am, vomiting on and off, and trying not to re-injure my knee. I managed to feel well enough to leave the house this past weekend for my husband's 42nd anniversary of the founding of his chapter of his fraternity at the TELLUS. I also attended the wedding of my friends J.D. & Lisa. They had a beautiful wedding and I was so excited to leave the house.

I just feel really alone, which is stupid because my husband has been amazing. My sister is here to help me, also. She just went through a bad breakup so I'm worried about her.

Well, enough about me for now.

TDRL; The Implant is helping, I feel alone with my friends, and I'm vomiting.

Picture of my back after the stapes were pulled out.

Getting ready for the wedding and classing it up!

Getting ready for my husband's fraternity chapter's 42nd anniversary.

Post Spinal Stimulator Surgery - Day 1

I had my surgery yesterday to have my spinal cord stimulator put in. Information about a spinal cord stimulator is HERE. The surgery wasn't bad. They put me completely out. I didn't even realize they were doing it until I saw this huge syringe. It looked like a PVC pipe.

This is day one. I do not have as much knee pain as I did before. I can actually sit Indian style without having severe pain. My back is really, really sore from the surgery so it's a bit hard to sleep. I am a bit tired today but I'm feeling a little better. I want to sleep but every time I try, I lay on my back and it jerks me awake because it hurts so bad. I have staples in my back and they are going to remove the staples in a week. I can't bend, lift, twist, take a shower, or anything before the staples come out.

I vomited once last night after I got home. I hope that this stimulator will cut down the vomiting since vomiting is also my pain response. Since I no longer have to worry about my knee, I can focus on the gastroparesis and see if that's where the vomiting is from.

I bought a cook book for GP with recipes that will be easily digestible. The problem is that if I eat six small meals a day, one small meal will fill me up for the entire day. I'm not sure how this is going to work because nothing seems to stay down.

I looked at pictures of me from last Christmas and now - I've lost so much weight. My face almost looks sunken in and pale. This is not the way I wanted to lose weight. My stomach is also bloated and swollen. I have severe cramps when I do try to eat, even with yogurt. I've been drinking a lot of apple juice but that's hit or miss with the vomiting, too.

I'm looking forward to hiking again though. =)

18 Year Dies from Gastroparesis Complications

This is why I started this blog. I wanted to share awareness with you all. I have the same disease this girl did. Please read the article. There are several points I want to convey to help you understand what I go through on a daily basis.


We need more awareness. No one should die because of this disease. My heart aches for her family and friends but I'll keep fighting for her and my other GP members. This just motivates me to do more and keep fighting. I know that I've been feeling discouraged lately, but this was the kick in the pants I needed to snap out of it.

Pay attention to the bold texts. That's similar to my story.

SPANISH FORK — A Utah woman who recently died from Gastroparesis is raising national awareness about the disease and inspiring people across the country. Haley Stonehocker of Mapleton died in her sleep on Thursday night. Her family and friends say she was the first one to help comfort anyone in need and she left this world wanting to help educate more people about her illness.

With a green ribbon on their chests, members of the G-Pact online community (Gastroparesis Patient Association for Cures and Treatments) gathered at Haley Stonehocker's funeral - standing together to honor one of their own. They call themselves "GP Sisters."

The women, who are in their early 20s, traveled from Boise, Reno, Denver, Syracuse, and the Salt Lake City are for the young woman they met just a couple of years ago. Cortney DeHoyos traveled from Denver, Colo. to honor Stonehocker and says she inspired her to help educate others about the illness.

"I had to drop out of college because I'm so sick all the time," said Cortney DeHoyos. "I'm constantly in and out of hospitals."

DeHoyos said having the illness can be discouraging for young people who suffer with symptoms daily.

"Sometimes people find our illness so unique and rare so it can't be real," said DeHoyos. "So we must be making it up."

"It (Gastroparesis) basically took me from being a mom to being in bed 24-7,"said Chelsea Rushton of Syracuse. "And having my parents raise my kids."

For Rushton the emotions of losing her friend are still raw. Just weeks ago, she visited Stonehocker in the hospital.

"We would text all night," said Rushton. "My husband would tell me ‘get off the phone and go to bed.' And I just couldn't."

Gastroparesis is a condition that affects all ages and races. The disease inhibits the stomach muscles' ability to function properly, which can interfere with digestion. It causes nausea and vomiting, and affects the body's ability to receive proper nutrition. Stonehocker became bedridden and was tied to a feeding tube in the hospital. Patients describe the illness as having the constant feeling of morning sickness or having the flu every day.

"It's very difficult just driving on the road. Many of us are nauseous just sitting in bed," said Maddie Cullen of Boise.
Related Stories:
Bedridden 18-year-old hopes treatment will help rare condition
Haley Stonehocker is a bright and charming girl who just turned 18. But the just-turned- adult is dealing with more than adulthood now.

Cullen is studying at the University of Utah and hopes to become pediatric gastroenterologist. She said Stonehocker inspired her to want to help kids suffering with Gastroparesis.

"We've already lost a few (people) this month to GP,"said Cullen. "It's a lot harder than older people who have passed away or lived more of their life. She (Haley) never got the chance."

Some say having the disease is especially heartbreaking for younger people because they say their peers just don't understand what they're going through. Some say they've lost friends because of the disease.

"You don't know if you're going to wake up and feel nauseous," said Stephanie Hyatt of Denver, Colo. "And go somewhere and have to go vomit in the bathroom and cancel on friends."

Hyatt said belonging to the online community with Stonehocker was a tremendous strength to her.

"She'd always say that I'm such a beautiful person inside and out," said Hyatt. "How I could make it through everything."

Colleen Beener sits on the board of G-Pact. She says it's not clear how many people nationwide suffer from Gastroparesis mainly because the illness is often misdiagnosed as an eating disorder.

"There are very few good doctors who understand this disease," said Beener.
"We've already lost a few (people) this month to GP. It's a lot harder than older people who have passed away or lived more of their life. She (Haley) never got the chance."
–Maddie Cullen

Beener said most people with Gastroparesis travel hundreds of miles and go to other extremes to seek diagnosis and treatment.

"There's just not a lot of understanding of this disease. There's not a lot of research going on about this disease. There aren't any good medications in this country for the disease," said Beener. "Most of us that find something that works we get it out of the country and it's not FDA approved but we do it anyway because it's the only way we can get through the day."

Dr. Troy Madsen, University of Utah, confirmed that Gastroparesis is difficult to diagnose.

"There isn't a blood test that can simply diagnose it," he said.

Madsen said the tests to diagnose the illness are invasive and can result in inconclusive diagnoses. Still, he recommends patients seek a gastrointestinal specialist to better diagnose the disease.

Tuesday, the group released green balloons at the track and field grounds of Maple Mountain High School where Haley Stonehocker was a track star. Alli Baker shared that interest with Stonehocker, who inspired her to run track and field even while suffering from her Gastroparesis symptoms.

"I always carried that never ever give up mentality that Haley always taught me," said Baker. "Mine's not as severe as hers so I was running for her and those people who couldn't do it when they wanted to."

The GP sisters took one final lap around the track for their friend Haley. It's a gesture of hope - for more education, better diagnoses and treatment so that those living with Gastroparesis will have a better quality of life.

The link to this article can be found HERE.

Updates on GP Management

I just downloaded a book that I hope will help that I found through the Gastroparesis community on Facebook. It's called, "Living Well with Gastroparesis" by Crystal Saltrelli. It has 75 recipes that should be easier for me to digest. I'm also going to try and keep a food journal to see what works and what doesn't.

What makes me happy about this book is that the author's story sounds strangely like mine. She went to the doctor and was diagnosed with Gastroparesis without hearing that word before, ever. Then, she went to the Motility Specialist who wrote her off because the Specialist felt that she wasn't a severe case, even though she was hospitalized over and over (much like me) for nausea, vomiting, and severe pain. It's just scary how similar my situation is to this woman.

The recommendation is to eat six small meals a day but that's challenging for me. I'm usually full after one small meal for several days, IF it stays down. I went to the doctor yesterday, dehydrated, and my blood pressure was back up to 140/110 because I was in pain and spent the last three days vomiting. I vomit, on average, about 6 to 8 times a day. Mostly, it's just green stomach acid because there's nothing left to come up at this point. Liquids won't even stay down.

I hope this book will help me learn to manage this condition. She says that the gastric pacemaker worked wonders for her and helped her to digest food easier. This was mentioned to me once by my GI doctor, but I haven't heard much else about it.

I can't live this way anymore. I can't leave my house without a bucket. I barely eat. I've lost 20 pounds. The doctors aren't sure what to do. The Motility Specialist doesn't want to see me until I need a feeding tube but I'd prefer not to have it come to that, you know?

I'm lethargic and tired. My friends don't want to hang around me, because let's face it, I can't go anywhere with my head shoved into a bucket. I just feel isolated and alone sometimes - and it hurts because no one understands this condition. My husband has been my rock and has been really supportive. But, I miss going out, even little things like to the movies or camping. The smell of food makes me really ill. I have to hide away from it when people are cooking downstairs.

I went to my regular doctor yesterday. He gave me Phenergan and Bentyl, which have helped in the past but it's hard for me to keep pills down. My stomach is bloated and swollen with severe pain. My skin is clammy because I have a fever. I managed to catch some kind of stomach virus ... and let me tell you, that plus gastroparesis makes me feel like I'm dying. The doctor wanted to put in an IV to hydrate me, but I was so dehydrated that he couldn't find a vein...not even in my FOOT! He said I should go to the emergency room but I just couldn't bring myself to go. I didn't want to wait 6 to 8 hours to be given pain and nausea medicine to be sent home just to have it all repeat over again. I want help managing the problem - not masking the symptoms.

Tuesday, I have a surgery scheduled for the Spinal Cord Electrical Stimulator (back surgery to control the nerve damage). This should help the nerves in my knee from misfiring me to tell me my knee is in severe pain. I'm hoping this will cut the vomiting in half as vomiting is also my pain response. That way, I can tell what is coming from my stomach and my stomach alone. Also, this will help me to walk again without making me feel like I've broken a bone in my knee. Walking is supposed to help digestion.

I will start the food journal tomorrow. I'm going to browse through these recipes to see if I can find anything worth making. I might have to make my husband do it because anything involving cooking or being near food makes me ill. I don't know if it's just in my head or what, but I can't deal with strong smells right now. I've been resting and trying not to push myself. I've been trying to drink gatorade, apple juice, and eat yogurt. Soft things that won't be too harsh on my stomach. I ate rice last night which was a bad mistake because now I have horrible gastric cramping. Before long, I just might have to buy some baby food and go from there.

What's even worse is that I've felt too sick to do anything. It's like everything I used to care about isn't even a priority at the moment because I am just so ill. I hate feeling that way. I miss my friends. I miss my family. It's even hard for me to play a video game because the games make me motion sick.

I just wish doctors wouldn't write me off because I'm not in need of a feeding tube yet. You think that they'd try to keep me from getting one, right? I'm just not sure what to do at this point. I don't want to be hospitalized for another 8 days but at the same time, I'm too weak to even take a shower to wash my hair.