Mayo Clinic - Day Three. EKG & Endoscope

I reported for my 10:35am appointment this morning for my EKG. The appointment was in Davis Building 2 East.

I didn't have very long to wait. As soon as I sat down, the nurse appeared and called about four of us back. The nurse led me to a dressing room in the back and gave me a gown to change into to. She told me to leave my stuff in my dressing room and to take the key with me. Then, I went around the corner and laid on the table in the room while my EKG was done. The tech doing my EKG talked to me about the Falcons and how disappointed he was that the Ravens won the super bowl. We started talking about UGA games, since I have to deal with the drunk people after the games. He was telling me how horrible the UGA and Florida games were. The other tech behind the curtain working on someone else was also commenting on our conversation and chiming in on what he felt strongly about. They told me that I was their favorite patient for the day. That made me smile. I think they were amused that I love football.

So, the EKG was normal and I was released. My next appointment is at 1:30pm today for my endoscope and my Bravo test. I'm going to take a nap until then.

I started a new page last night based on humor. When I went to sleep last night, it only have fifteen likes. Now, it has over 100. The page is LAUGHTER THROUGH GP. I figured that Gastroparesis needed a little humor to cheer members up and it was a niche that hasn't been carved out yet. =)

At 1:30pm I reported to the patient registration desk in the Mayo building to register for my endoscope.

The receptionist sent me up to Mayo 5 North to check in for my procedure.

Before I did anything else, I stopped and looked at the views from the fifth floor. They were amazing, so I took some pictures of that as well.

I sat down and went over my medication list. I crossed a bunch out that the doctor took me off of and answered a questionaire about past surgeries and medical issues. I sat with papers in hand waiting for the nurse to call me back.

The nurse called me back and had me put on a gown. The attached me to a blood pressure cuff (my BP was high, no changes there), and got my IV in my right hand on the first try. She asked me a lot of questions and then I met the doctor. He was nice. Then, I met the anesthesiologist who was nice as well. They didn't waste any time and they wheeled me back in my bed for the endoscope. They had me lay on my side and bite down on a green plastic ring. The anesthesiologist pushed the drugs to make me sleep. I remember looking at the screen and then waking up in recovery. I cracked jokes with the nurse after I woke up.

The nurse told me that I would feel like there's something stuck in my throat because of the BRAVO TEST. The capsule attached to my esophagus will fall away by Friday. I came back to the hotel, ate a bit, and then went to sleep. I'm about to go back to sleep now because I still feel exhausted.

Mayo Clinic - Day Two. Gastric Emptying Test

Today was the long dreaded, gastric emptying test. We arrived at Mayo at 7:15am to check in the registration desk in the Mayo Building. We were supposed to meet with a financial adviser but the person who checked me sent both my husband and myself up to the second floor, back to radiology.

After we got back up to Mayo 2 South, I checked in at the front desk for my 8:00am appointment. They told me to have a seat and that someone would be with me shortly. I sat down with my husband and put my head on his shoulder. I promptly fell asleep. Then, a tech comes out and calls four names, mine being one of the four. He told us to follow him to nuclear medicine. As we went down the long hallway, I passed sub-waiting room B that I had to wait in yesterday. I made it to the end of the hall and took a left until I got to nuclear medicine. He ushered all four of us in and sat us each separately down in different "rooms." I say rooms but they were covered by curtains. One of the techs came up to me and presented me with the radioactive eggs over toast.

They gave us whole milk to wash it all down with. I called one of the techs over because halfway through the eggs, I became full. I asked how much of the meal we had to eat in order for the test to work. She said for me to ignore the toast and eat the eggs, that they were the most important part. So, I tried to eat as much as I could, and I did finish the eggs but left a third of the toast unfinished. I washed it down with the milk because the food kept getting caught in my throat, much like the barium tablet did yesterday.

After I ate the meal, I stood in front of the gastric scanner and took my first picture. The tech had me stand there for two minutes while the picture was being recorded. He handed me a piece of paper that said I had to repeat the scanning at 9:10am, 10:10am, and 12:10pm. The piece of paper had me circle whether or not I had a bowel movement in between scannings. Of course, I didn't have any bowel movements.

I went back to the front desk and checked in for the 9:10am scan. The receptionist sent me back to nuclear medicine and I made my way back there. I stood in front of the scanner and the food was still sitting in my stomach an hour after I had eaten the eggs. I stood there for two minutes while the tech captured another picture.

I waited until 10:00am and checked in with the front desk. On the way back to nuclear medicine, I vomited in the bathroom. I only threw up some of the eggs and toast. Then, I began to get nervous. I remember the doctor telling me in the hospital that if I threw up, the would have to start the test all over again. I made it back to nuclear medicine and told the tech what happened. He positioned me in front of the gastric scanner and started my two minute picture capture. He analyzed the results in the computer in the other room and talked to a colleague. He said that I had only thrown up 10% of the meal and that we still had enough to finish the test. He said that he was going to inform the doctor about the vomiting.

On a side note, they wouldn't let me take any kind of nausea medicine or pain medicine for this test because the doctor didn't want my medicine to skew the results of the test.

The next image was going to be at 12:10pm. I found a chair and got out my kindle and headphones. I managed to curl up in that tiny chair, in a ball, and get some sleep. Which is good, because the gastric spasms started about 20 minutes after I ate the radioactive meal and it was either try and sleep or cry because of the pain. I slept until my next picture was due.

At 12:00pm, I checked in with the front desk and went back to nuclear medicine. I had my final gastric scan done and I could still see all of the food in my stomach. It didn't move hardly at all. I gave them the sheet that said I didn't have a bowel movement between the different image captures.

Now, I'm exhausted. I think I may try and nap for a bit. My stomach is swollen and the spasms are still happening. I'll be happy when the rest of this toast finally comes up so that I don't have to deal with the pain anymore.

Tomorrow, I have an EKG and a scope. Wish me luck!

Mayo Clinic - Day One. Bloodwork & Barium Swallow

I woke up bright and early this morning around 5am - and by woke up, I mean, just stayed awake. I got up and made it to Mayo for my 6:30am blood draw.

The doctor wanted to check my CORTISOL LEVELS as well as do a complete blood panel - CBC, liver enzymes, etc.

When I walked in, I checked in at the desk in the front after reporting to Davis Building 1 East. I gave them my name and birthday. Then, I sat in a waiting room with five doors. Each door had a lab tech come to it and call people back. It was very efficient. This is what I saw in the waiting room.

The lab tech called my name. She was a small, Asian lady who was extremely nice. She sat me down in the blood drawing chair that we're all familiar with. She looked at my arms and applied the tourniquet. She thumped my veins a few times, clucking and telling me that I didn't have anything to really work with. I've been REALLY dehydrated but yesterday, I sucked down about half a case of Dasani with Pedalyte powder to hydrate myself. It wasn't enough. She went into the first vein and got a bit of blood out for the tube for the CBC, but almost let the tube clot because she didn't shake it slowly back and forth the way I was taught to do in high school. Mrs. Gray would be proud to know that I still remember how to do that. And, she kept digging the needle in and out of the vein, which resulted in that vein blowing. That was in my upper right arm.

Next, she tried my left hand. She pulled the needle back too suddenly while trying to change vials and blew that vein too. Then, she tried my upper left arm. That was probably the worst vein blow I've ever felt. It still hurts. She managed to blow that one pretty good without even really getting a good blood return in the butterfly needle that she used. The Mayo Clinic doesn't put bandaids on the site. Instead, the put gauze over it and then wrap it with gauze. After the tech blew another vein, she called a colleague over.

The other tech scanned my arms and I finally just presented my wrist to her. She told me that she didn't like to use the wrists because they were usually painful places. At this point, I knew my wrist would work and told her that I was used to it because that was the go to place for my doctor. She listened to me, got a butterfly and got blood on the first try. Instead of messing up the site by switching vials, she didn't want to lose the vein so she took blood into two syringes. She then took the syringes and put them into each different tube for the blood panel. After that, I was free to make my way upstairs to Radiology.

This is my left arm:

This is the blown vein in my right arm but it doesn't hurt nearly as badly as my left arm:

I then left the lab to go to the Mayo building and find Mayo 2 South for Radiology.

I checked in at the desk, noticing that they had a policy that you can't check in more than 30 minutes ahead of your appointment.

The waiting area was closed off.

After I checked it, I was told to go through the double doors and down the hallway until I got to the substation waiting area. I was at another, smaller check in area. The nurse gave me a bag and a dressing gown. The dressing gowns are new, so she had to give me a demonstration on how to wear them. They have three arm holes. You put the tag in the back and put your arm through the two holes, and then you wrap the gown around you, putting your arm through the final hole. There were no ties or anything like that. I had a seat in another waiting room, waiting room B. Unfortunately, it was packed so I wasn't able to take a picture. I didn't want to violate anyone's privacy.

After sitting there for about ten minutes, a tech called my name along with three others. He walked us down the hall and swung a left. He led us to an even smaller waiting room and told us that the techs would come and call us soon. I sat in the cramped waiting room. An older man was kind enough to move over on the bench so that I would have a place to sit. They called about three people before it was my turn.

The tech took me back to this cold room and told me to have a seat and that the doctor would be with me shortly. My appointment was at 7:45am and I noticed it was 8:18am while I was waiting for the doctor. I will say that Mayo is very efficient and the staff I have encountered so far has been extremely nice.

The x-ray tech was pouring barium into a cup and also placed a cup of water next to that. When I saw the barium I was a bit scared. The x-rays I've had in the past, I was always told to drink two big things of barium before I took pictures. However, this test was different. I had an emesis bag, just in case. It's better to be safe than sorry and I tend to vomit up barium.

The doctor came and and then the test was started. I took in this enclosed space, with the x-ray machine in front of me and the screen to the right of me. I could see my skeleton and organs in the screen. It was extremely neat! The doctor gave me the cup of barium and told me to take three big gulps. As I did, he took screen shots at the screen to my right so that I could see what was happening. I got to watch myself swallow the barium, which distracted me from how uneasy my stomach was becoming.

He then told me to turn facing left, facing the wall. I drank a few more gulps of barium as he took pictures. The doctor told me to stand with my back against the wall of the machine. Then, the x-ray machine I was halfway inside, standing in, started to rotate and I was on my back. I was told to lay on my stomach (which is hard for me to do because it makes me even more ill) and was told to cross my left leg over my right, making a triangle. I had my right arm down by my side and my left arm up by my head holding the cup of barium with a straw. I had to drink it while the doctor took pictures that way, and he instructed me to turn on my left and right sides, also while taking pictures.

Then, I was instructed to lay on my back again and the machine started to straighten back up and I was standing again. The tech gave me a cup of water and a barium pill. The doctor instructed me to swallow the pill but it got stuck halfway down, like everything has been lately because my esophagus is burnt and swollen.

He said, "interesting."

He instructed me to drink more water and finally it went down as he was taking pictures. Then, he informed me that my test was done.

Honestly, that's the best barium test I've ever taken because I didn't have to down two huge things of barium. I barely had a cupful. And, that's all I really need. It's fighting to come back up, even now.

That was the end of day one at Mayo. Tomorrow, I get to look forward to the gastric emptying test at 8am. Four hours of pictures after I eat radioactive eggs. That's the test that I'm scared of because if I get sick, I have to repeat it all over again.

I will try and take more pictures and let you know what I think of tomorrow.

As for today, I am very pleased with the treatment I received today. My only complaint is that I have one blown vein in my upper left arm that really hurts. She blew it good. It's going to bruise something horrible. I just hope for my scope that they'll be able to find an IV site. I'm going to be chugging Pedalyte from here until Wednesday. I hope it hydrates me enough for that.

Other than the blown veins, everyone here has been extremely nice and helpful. My wait times weren't long at all. I am very happy that I didn't have to swallow more barium than needed and the doctors here are truly the best at what they do. However, they don't just treat me like a diagnosis, they treat me like a person. I really do appreciate that.

The lab tech this morning told her colleague that I was a fantastic patient because I didn't flinch once while they were poking me. =)

Sunday Night - Before all of the Testing at Mayo Begins

G-PACT wrote something today that I thought was worth putting into my blog:

"We tell people they are “strong” when we are uncomfortable with their pain and would prefer that they shut up and not bother us with it. To say “but you are strong” is telling someone “I don’t think you should feel that way,” and it’s not a compliment. I don’t think that strength means being invulnerable, or pretending that you are.

You don’t owe it to your friends to be the “strong” one. Just because you have always been the good listener and the shoulder to cry on, doesn’t mean you have to maintain that role now when you need a good listener and a shoulder to cry on.

Be sad. Be angry. Let your heart break – in the diner, on someone’s futon, in the park, on the way to the zoo, at brunch, over drinks, in the therapist’s office, on the bus – Wherever it breaks, let it break all the way open, let it run out and down and spread out in a soggy puddle at your feet. Say, “I’m sorry, I can’t listen to you today, my heart is broken. Will you sit with me a while and I’ll tell you about it?“

Say, “I can’t take care of you today, but you can take care of me, and maybe tomorrow I will take care of you, and we can trade off like that for a while, okay?”

Say, “I love you, and I love that you think I’m strong, but I don’t feel like being strong today. I feel like being angry and crazy and sad. Can we go to the movies or just sit here quietly or take a walk or talk about it or not talk about it?“

Your friends may get scared when you do this. If you, the “strong” one can break, what does that say about them? That’s why they push back at you and try to remind you of your strength, when what you need is for them to stand by you in your pain and weakness. They don’t have to solve that pain, they just have to bear witness to it. Maybe they don’t know how – a lot of people don’t know what to do in the face of other people’s pain.

They want to fix everything, and if they can’t fix it they feel inadequate. As the “strong” one you can help them out with this by saying “You don’t have to fix it. You don’t have to do anything. Just be with me, and listen, and love me, and I’ll love you back. That’s all I need – to know that you love me, even when I’m sad and scared and don’t know what to do next.”

To ask for help is strength.

To admit you don’t know is strength.

To tell the truth about what’s happening is strength.

To be imperfect and to trust that imperfect people will love you despite those imperfections (albeit imperfectly) is strength.

To let the people you love see how you really feel – without trying to hide or stage manage their perception of you – is strength."

--The lie of strength, Captain Awkward

The link can be found HERE.



I want to ask all of my friends to please be patient with me in the next few weeks. I'm going through an entire week of testing at Mayo this week and I'm really nervous. I feel so awful that I wouldn't be surprised if I cried a lot more than usual. All of these procedures may leave me broken and exhausted by Friday. I can't eat after 6pm and I can't have anymore water after midnight, tonight.

Tomorrow, I report bright and early at Mayo at 6:30am for them to draw my blood to check my CORTISOL LEVELS.

At 6:40am, they are drawing more blood to do a complete panel. Thyroid, CBC, and other tests.

At 7:45am, I report for my barium swallow x-ray. Please keep your fingers crossed for me. I almost always throw up the barium. If I can't keep it down, I'm not sure they can do the test.

Tuesday, I get to go through another gastric emptying test. I'm not looking forward to that either. If I vomit up any of the eggs and toast, I will have to do the test all over again. They're going to take x-rays every 30 minutes for 4 hours. Last time I had this done, it hurt so badly.

Oh! And I'm going to take a picture of each Mayo building and review my procedures as well. I want to help ease anxiety of those who may be heading here later.

I love the hotel room. It's absolutely beautiful. It's a lot cheaper than the hotel we stayed at previously. We're staying in The Hampton Inn off of the mainland, closer to the Jacksonville beaches. Here are some pictures:

A Week Until the Mayo Clinic

On the 24th, I woke up with a headache - the same headache I've had for a while now. I can only describe it as a dehydration headache.

Do you ever have the feeling that sometimes you're an easy target because you're sick, and usually alone? I've felt that way the past week. I have certain friends who don't usually want anything to do with me until they need or want something. It shouldn't bother me, but it does. I felt I should write about it public-ally because it makes me feel worse than I already do. I also have a bad habit of not saying no. I need to fix this issue but then I'll be called selfish behind my back. I think I care too much about what other people think about me. It's a problem that I've had since middle school and I'm really not sure how to turn that switch off. But, I do need to find the off button. The last thing I need is to make myself even more ill over what someone thinks about me.

I think I have too much time to think. =)

My symptoms are still:

1. Swollen throat - it's hard to sip on water or swallow anything still.
2. Headache - my head still aches and my best guess is that it's because of dehydration.
3. Fever - chills and fever above 101. I can't keep down pills to get rid of it.
4. Teeth - my teeth are really sensitive on both sides so I can't really chew.
5. Vomiting/nausea - vomiting up green stomach acid. There is nothing left in my stomach and I have a dry mouth, too.

I'm going to take what medications I'm still allowed to take and lie down for a bit. I shouldn't be tired but I keep almost falling asleep, even just sitting up typing. I feel awful and a bit sad.

On the 26th, I didn't sleep for two days. I'm exhausted but it's been hard for me to sleep without getting up to vomit or from bouts of pain. I've had terrible, gastric spasms. I call them, "gastroparesis attacks." Everyone is pretty worried about me. I've also vomited myself into a throat infection and now, I'm on antibiotics, if I can keep them down.

I vomited day before yesterday and got fluids at the doctor. My blood pressure was 145/105. I was running a fever and I just want to cry. I'm terrified. I'm tired of vomiting and I'm tired of pain. The IV had to go into my foot because the nurse couldn't find veins anywhere else.

I go back to Mayo next week. I hope that they're able to help me. I'm having lab work done on Monday and I'm there for the entire week full of testing. I hope they'll hospitalize me and give me fluids. My urine is also dark in color which tells me that I'm dehydrated - that and I've only gone to the bathroom once today. That's not a good sign.

I had Miso soup and hot tea for dinner. I'm trying to do clear liquids. The Gatorade keeps coming back up so, I'm going to try clear liquids for a bit. I'm incredibly tired and I hope that I can sleep tonight. I managed to fall asleep around 2pm yesterday - just out of pure exhaustion. I didn't wake up until 1pm today. I hope I can sleep tonight because I REALLY need the rest.

I hope that my GP friends have a pain free and nausea free night. <3

Gastroparesis Inspired Art

I'm looking for Gastroparesis inspired jewelry, art, and clothing. I have a few friends who are working on art to share with the rest of the GP community. If you're like me, then you probably don't have a lot of green clothing or GP related jewelry items or wrist bands. If you find great Gastroparesis type art, please leave me a comment with a link and a description! I love to see and learn about new things - websites, etc.

For Gastroparesis Inspired Jewelry:

NERDY GIRL CREATIONS ON ETSY. This is a Green's Not Easy Member's friend who makes jewelry. She's amazingly talented and decided to help further our cause for awareness by making GP themed jewelry. An example of her work is below:

JUST BREATHE JEWELRY. This is a collection of handmade, from scratch, unique and chic jewelry, created in part to donate to gastroparesis research! Use Coupon Code BLYSSBREATHEXX for free shipping! As always, $1.00 of every purchase goes to the GPD Foundation for a cure for gastroparesis! An example of her work is below:

GASTROPARESIS INSPIRED JEWELRY BY LORA ON FACEBOOK.

Gastroparesis is an insidious disease meaning literally "stomach paralysis". An estimated 5 million American's suffer from this disease, which causes them to slowly starve to death, because they can't eat the food in front of them. Many suffer from malnutrition because their bodies simply cannot process food/nutrients appropriately. This her way of helping to build awareness. An example of her work is below:

For Gastroparesis Inspired Art:

RARE ARTIST. EveryLife's Art Contest for Rare Diseases 2013 is accepting submissions! www.RareArtist.org The Art Contest was established to empower those affected by rare diseases to express their unique power through art. Please share the invitation, & share your art! This image, "Trusting Hands", won a special artistic merit award in our 2011 contest, by Gastroparesis patient Shelley Bertrand. RareArtist.org was created for artists affected by a rare disease. The EveryLife Foundation for Rare Diseases received many exceptional works of art during our inaugural EveryLife Art Contest which inspired us to create a venue to display this art. It is intended to showcase the Artwork and the Artist, in order to bring awareness to the rare disease community. There are almost 7,000 rare diseases that affect more than 25 million Americans. For more information on the EveryLife Foundation for Rare Diseases’s work to support the rare disease community please visit www.everylifefoundation.org.

For Gastroparesis Ribbons and Wrist Bands:

A member of the GASTROPARESIS Facebook group as designed awareness ribbons for GP. He is in the very beginnings of creating this magnetic ribbon by getting price quotes and coming up with a plan to sell them in bulk, either in his own store or somewhere else. He wants to donate all proceeds to GP research. As soon as the link is available to order these ribbons, I will post it. The image of the ribbon is below:

It's Not Easy Being Green: Hold On or Let Go?

This is from the blog of one of my former friends and the creator of the Green's Not Easy Page on Facebook; She started writing a blog based on her experiences and I would like to reblog this because it's a great article on how relationships change when you have an invisible illness. Please click on the link below to read her blog entry:

It's Not Easy Being Green: Hold On or Let Go?: One of the largest struggles I’ve had to overcome since I’ve been sick is how to deal with social situations.


If you have gastroparesis and you're looking for a support group, please click to join the Gastroparesis Support Group on Facebook: http://www.facebook.com/groups/StrongerthanGP/

Detoxing - Twelve Days to go Until Mayo

This past week has by far been the hardest I've ever had to endure, GI wise. I didn't realize how much of the medication actually did help, even though I was still sick on the medication. This detox is like being in my own, personal hell. The stomach spasms have not subsided, even though the last time I ate was the day before yesterday and it was just broth. My throat burns, and is swollen from vomiting up bile. I can barely swallow the pills I'm still allowed to take. The Zofran does nothing and I took my last Phenergan pill tonight.

I hope the doctor will call in a refill tomorrow (or later today). At the specialist today, while I was having my spinal cord stimulator checked to make sure it was scarring in all right, my blood pressure was 145/105. I'm guessing that's because of staying up vomiting for two days and the gastric spasms. My blood pressure always sky rockets when I'm in pain. Since my blood pressure had been fine the previous times I had seen that specialist, he wasn't worried. Since I can't take the Vicodin right now for the surgical pain where my stimulator is still scarring in, he prescribed me lidoderm patches to wear throughout the night or day to numb the spot where the muscles are still inflamed. He said it's going to take a while longer for my body to stop fighting the fact that it has a foreign object there. He also told me that if I notice that the stimulator isn't covering the area it's supposed to or if it's taking longer than usual to charge, to let him know and he would call the Boston Scientific Representative in to tweak the stimulator to adjust it. He said that I'm probably going to need it adjusted a few more times since it's still in the process of scarring in.

My throat is so irritated. I might try to drink some hot tea and honey to see if it will soothe the irritation. Sadly, the only juice in the house is cranberry and I can't stand cranberry juice. It's too bitter for me to handle right now. I managed to drink all of the apple juice.

Twelve days to go until my week of testing. I just don't know how I'm going to make it through the next twelve days. This almost feels like cruel and unusual punishment. I feel like I have a charlie horse in my belly along with someone hitting me in the stomach with a metal bat over and over again. The gastric spasms keep inducing vomiting, which is just dry heaves right now because there's nothing left to come up. I've burnt my throat and I'm miserable.

I'm tempted to take a pain pill just to get some sort of relief and to be able to sleep but I don't want to screw up any testing that Mayo will do. I really want them to find the issue that's making the Gastroparesis worse and fix it.

I was hoping to get out of the house tomorrow. I have a project I want to do as a gift to my husband for Valentine's (I usually call it, "the Hallmark holiday") Day. I'm scared with the way things have been going, I was lucky enough to make it to the doctor and back today.

My stomach is swollen and hard to the touch right now. It's been that way for three days. I'm not quite sure why and it's a bit scary.

This is night two of staying up without sleep. I'm so exhausted and I wish I could just pass out. The Nature Made Sleep Aid isn't helping and my throat is killing me. I may have to go to my primary doctor tomorrow. Maybe he can give me some advice on what to do while I'm detoxing. I have chloraseptic spray - but I can only use it so often.

I just really need some sleep. I think that would make a world of difference.

My Medical History Story & Patient Rights

I want to take a moment to tell you about some of my medical history. I know that a lot of my entries are about present events, but there were a lot of events that led up to where I am now.

It all started when I was in high school, in 2000. I was sixteen years old and I was very, very ill. The illness just sprung on me, like a tiger waiting to pounce. It started with a fever, and I remember being in so much physical pain. I remember riding the bus to school and vomiting on the bus. The bus driver made me wait in the seat I vomited in until everyone got off of the bus. I remember being ashamed and embarrassed as all of their judgmental eyes passed over me as they left the bus, one by one. After everyone had gone, the bus driver gave me paper towels and cleaner and told me to clean up my mess myself and that she wasn't touching it. Sadly, I didn't know enough then to challenge her or just get off of the bus. I remember other mornings where I would walk to class with my best friend Paul, and just start vomiting. This one instance stands out in my mind. We were walking to class and had to pass through a breezeway outside, when I felt the urge to vomit. There was no where to run, I had to get sick then and there so I ran to the side of the high school building and vomited into the grass. I remember Paul holding my hair back for me and telling everyone who passed by that I had bad Chinese food the night before. He stayed with me until my episode was over and walked to the office with me so that I could call my mother.

I vomited up everything I ate and slept for three days. My mother, when I wouldn't get out of bed, felt my head and realized I was running a fever. I remember wrapping my comforter around me and getting into the car while she drove me to the ER. When I got there, I kept vomiting up bile, pretty much constantly. The doctor pressed on my abdomen and I vomited more. He thought that since my pain was on my lower left side that I might have appendicitis. I was admitted into the hospital when he finally reached my doctor.

I don't remember much after that. I was in a haze of pain medications, nausea medications, and just exhausted. The doctor that I normally saw came in to see me in my hospital room a few times and I went in for emergency surgery. They did an EXPLORATORY LAPAROSCOPY on me and took pictures while the doctors were looking for the causes of my sudden illness.

When I came to, in recovery, I was taken back to my hospital room. They gave me more pain medication because my belly was very swollen from the gas they pump in during the surgery and the surgical incisions. The doctors went in through my belly button and my lower left side. I remember being really angry because my aunt had the pictures the doctors took of my abdomen and I remember yelling at her and reducing her to tears because I wanted to see what had made me feel so miserable. Did I mention that I am really mean on pain medication? I don't know why I have that side effect, but I do. I apologized to my aunt later and now everyone laughs about it.

The doctors found that I had ovarian cysts. This can be normal in women but mine were pretty big. They removed some of the cysts and some had ruptured, leaving fluid behind that caused an infection. I also had endometrosis. I was utterly shocked because I was only sixteen. I didn't realize that my vomiting and pain could be something like that, because I remember thinking that it must have been some sort of virus. I had never seen anyone else that sick in high school. The doctor also informed me that he took out my appendix anyway, just in case.

My classmates from Chemistry came to visit me while I was in the hospital, bringing me a card signed by everyone (which I still have), and wished me a speedy recovery.

From then on, I would vomit and get really ill on and off, for years.

I became really ill in 2005. I had abdominal pain and my symptoms were the same as they were before. I went to the GYN and told them about my history. They ordered another exploratory surgery and found a few small cysts, but nothing out of the ordinary. They found a few lesions that were removed but nothing to explain my symptoms. Eventually, I was fired from work because I couldn't come in due to vomiting and missing too many days. I stayed miserable for the next few years with the abdominal pain and vomiting.

I went from doctor to doctor, only to be told that there was nothing wrong with me and that what I was experiencing was in my head. After a while, I started to believe them, but I never gave up. That's the important part of all of this - NEVER GIVE UP! You know your body better than any doctor does.

In 2010, a friend of mine suggested that I see another GI doctor. I had been blindly following what doctors had been telling me for five years previously, so what would be the harm in getting another opinion? This was the first time I became my own advocate. I didn't realize that patients had rights. How could I? No one had ever told me. So, I started doing research and found a GI doctor covered by my husband's health insurance, close to our house. I made an appointment and started doing research online about my symptoms. I began to take down questions to bring with me to ask the doctor. I didn't get all of my medical records together because there were scattered in so many different places. My doctor in my hometown had hundreds of pages on me alone, my file was the size of a textbook!

So, I went to my new GI doctor and brought questions, my symptoms, and what I had eaten/gotten sick. He listened to me and poked around my belly for a bit. He looked at me and told me that I needed a HIDA SCAN to confirm his suspicions. He thought that my problem was my gallbladder but wanted to make sure, first. This seemed reasonable to me, so I went to the hospital for my scan. The procedure HURT SO MUCH! I cried during it because of the pain when the dye hit. This wasn't a normal reaction. Usually, the scans are supposed to be painless.

After the scan, I reported back to my doctor. He looked at my results and told me that my gallbladder was functioning at only 15% and sent me down the street to the general surgeon. The surgeon was amazing. He answered all of my questions about the surgery, and took the time to examine me. Upon further examining, and realizing I hadn't eaten in a week, decided to hospitalize me. I waited in the hospital for a few days while he gave me medications for pain and nausea, as well as re-hydrating me. My fever ran close to 105. So, I had the surgery.

The OR staff came and wheeled by hospital bed down to the operating room. They waited for the doctor to come in before they gave me the medicine to relax me. When the doctor entered the room (and OR's are freezing), and they gave me Versed to relax me while the surgeon prepared for my gallbladder removal. I remember, after they gave me the medicine, that I told him that I hoped that it wouldn't be like the scene from SPACEBALLS where the alien pops out of me and does a dance across the OR. The surgeon cracked up as the anesthesiologist put me under.

The surgery itself wasn't too bad. I was up and walking around the next day. I remember that the surgeon came into my room and told me that my gallbladder was the nastiest thing he'd ever seen. As it turned out, my gallbladder was NECROTIC. So, I'm glad that I got that second opinion and didn't listen to the other doctors.

After that, well, as you well know, I've had nerve damage and more complications. In March of 2012, I was hospitalized for what the doctors thought was a terrible stomach virus. I received every test under the sun. I was vomiting up everything, even water. They decided to do a Gastric Emptying Scan on me, which I had never heard of. The doctor told me he was testing me for Gastroparesis, but I had never heard of it. My scan came back saying that after four hours, my stomach was only emptying at 36%. My GI diagnosed me with a mild case of Gastroparesis and discharged me after he did the ERCP procedure (which can be found in another blog entry of mine).

I went home and researched Gastroparesis, but aside from Stephanie's and Crystal's blogs/websites, and Mayo's of course, I couldn't find anything else on it. I decided to start my own blog and I helped start a facebook page that I'm no longer a part of, but I helped it grow. I've started my own facebook pages and groups, and they have been pretty popular online. However, my stomach, even with medications and a botox injection, has quite been the same.

I vomit daily (6 to 8 times, if I'm lucky). I'm seeing a Mayo Clinic Specialist, but I'm still my own advocate.

I want everyone to be aware that they have RIGHTS as a patient. They are but not limited to:

The right to receive information from physicians and to discuss the benefits, risks, and costs of appropriate treatment alternatives.

The right to make decisions regarding the health care that is recommended by the physician.

The right to courtesy, respect, dignity, responsiveness, and timely attention to health needs.

The right to confidentiality.

The right to continuity of health care.

The basic right to have adequate health care.

Don't EVER let any doctor tell you otherwise. If you aren't getting the care you need, don't wait like I did. Don't be miserable for five years, almost destroy your marriage, and friendships. Keep searching until you find someone who will take the time to listen to you and give you treatment. No one should have to suffer when there's so much that modern medicine can offer. <3 More about patient's rights and what they are can be found HERE, HERE, and HERE.

Also, Valentine's Day is coming up. There is a movement going around in the Gastroparesis communities to wear green on the 14th of February. This image was made by one of my fellow Gastroparesis fighters. I know that Valentine's Day is a celebration of love. People normally wear reds, pinks, and purple hues, but how about showing a different kind of love and support this year? Will you please wear green to show support and love to those of us with this illness?

We are asking that you stand with us in unity to show support. It's a small thing to ask to support me as well as other GP fighters out there. We can't eat the Valentine's candy and most of us can't even sit in a restaurant because the smells make us ill. It would be appreciated so much. If you could take a picture, we can compile them to make an awareness video to show people that GP is out there and people know it exists.

No awareness, no research, no cure.

This picture was made based on the Spoon Theory: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

These images can also be found on our PINTEREST PAGE.

Debilitating Stomach Spasms & Miserable - Day 5 of Detox

I am trying to eat and even liquids like Miso soup or an ice cream milkshake cause debilitating stomach spasms that immediately start 20 to 30 minutes after I eat/drink it. The left part of my throat under my mouth is swollen and is painful. I think that could be from vomiting up bile, but I'm not sure. The headaches are still rather painful. I've been trying to drink apple juice and water in case it's a dehydration headache.

The spasms hurt so much. I almost cried several times today. I had to hold on to the counter and try to breathe through them. It felt like I had a charlie horse in my stomach. It just hurt so much and so intensely that I ended up vomiting up everything I had eaten for lunch.

I really wish I could take my medicine. I'm using Quease Ease and Preggie Pops, hoping they'll help. I managed to vomit myself into exhaustion today because I made the mistake of eating last night.

I'm sipping on Gatorade and trying to rehydrate myself to get rid of this severe headache that I've had for several days. It doesn't seem to be budging. I'm watching Doctor Who and trying to distract myself. I had friends over last night that distracted me from feeling awful, and that did help! I've missed hanging out with people.

I got to leave the house for a little while to help my husband shop for a Microwave, carrying bags and emergency vomiting supplies in my purse. I was fine for a bit but eventually, I had to go home because the illness hit with a vengeance.

People constantly tell me that I don't look sick, that I look really good. I don't feel very good. I'm going to share something with you that one of my friends on the Green's Not Easy Page. It's called THE SPOON THEORY. You should click on the link and read it. It applies to everyone with a chronic illness.

I'm just incredibly tired and I'm really tired of being ill. I'm scared to go back to Mayo Clinic the first week of February for testing. I'm terrified that either they're going to find something truly horrible making my GP worse, or nothing at all. I'm scared that I'm never truly going to stop vomiting long enough to finish my Geology degree. I'm scared I won't be able to work while my husband goes back to school. I want to repay my husband for all of the kindness and patience he's shown me but I'm just scared I'm not going to get better at all. I'm just miserable and I miss my friends. I miss being able to eat even simple things, like soup. I miss not being in pain.

I know all of this sounds incredibly selfish. That makes me feel guilty. I know there are so many people out there worse off than I am, and I constantly think of those people and hope they find some relief. I hope for all of our sakes, that someone will research GP and come up with a cure.