The back of my throat and a little ways down my esophagus are so sore. It feels like it's been torn and/or burned by something. I woke up and vomited a little bit of chicken I ate last night. I know salad is miserably rough on my digestive system but I really wanted caesar salad yesterday. My throat hurts so much. It burns and feels miserable. I took my medicine in hopes that it helps some. I can barely swallow, even Sprite. I think I'm going to switch over to gatorade. My teeth are also very sensitive. They won't let me chew solid foods very easily and it's worrying me because this is new. Is this because of the vomiting?
I ultimately decided not to go to Convention. My husband didn't think it would be a good idea because I've been so sick lately. He thought I should stay home and get some rest. Riding in a car to Connecticut probably wouldn't be such a great idea. I wanted to go and hang out with my fraternity brothers and to hang out with people that I met at Archon's Academy and to talk to friends. Maybe next year.
I had really horrible dreams last night but I can't remember what they were.I woke up in a cold sweat though and scared.
I need to try and get some stuff done for Incept today. I'll help my friend with pamphlets and business cards to give out to new people. I can do that without leaving home and getting ill. I'm just so disappointed in myself. I just feel almost worthless sometimes.
Oh well, these things happen. I have my motility appointment on July 7th (that's the soonest they could see me). So, we'll see what they say. I'm a bit scared of that appointment. I have been taking motilium and I haven't noticed anything bad about it yet. I'll have to report my findings.
Thursday, June 21, 2012
Monday, June 18, 2012
Woke up at 6am - and My Stomach Hates Me
My stomach managed to wake me up and I went straight to the bathroom and vomited. So much for that. I thought I was having a good day yesterday. I vomited up some of the food that I ate at the wedding reception, some of it wasn't digested (OK, I know that's probably TMI - but my blog is to help keep track of these things to tell the doctor). I have very intense stomach cramps. I also feel very tired, exhausted, and fatigued even though I slept yesterday and some last night.
I just took:
1 pain pill
2 anti-spasmotic pills
1 anxiety pill
1 muscle relaxer
2 anti-nausea pills
Between all of those, and I hope I can keep those down, hopefully I'll go back to sleep. I just hate waking up with that immediate need to be sick. And, as per usual, I whacked my knee on the side of the toilet again.
I just want to feel better. I'm going to call and make an appointment with the motility specialist. She's at Crawford Long, so that's a bit closer to me to get to. When I do drive, I have to drive around with a bucket. I've gotten pretty good at vomiting outside of moving cars though. I don't feel safe driving because I might get sick while I'm driving.
I need to find a primary care doctor closer to my house as well. I feel bad just walking in and saying, "Hey, I've got gastroparesis and I'm your new patient!" I would like all of my records in one place, though. My knee records, my stomach records, my records from my old primary care doctor. I feel as though my medical records are scattered all across Atlanta.
I have to say that it was good to leave the house for a little bit. I've been confined here since March since my GP has been so severe. I slept on the car ride back because the nausea started to hit. Then, I went to bed and didn't wake up until about 10pm or so. This new medication knocks me out.
The medicine that helps the most is the muscle relaxer. It relaxes my stomach enough for me to eat and not be in as much pain.I don't know if they'll keep me on it or not but it's the only thing that seems to help.
Maybe one day this Summer, I will get to go to the beach! I miss the salty smell of the air... there's nothing quite like it. I'm leaving Wednesday or Thursday for a car ride up to Connecticut for convention for my fraternity with my friends. I hope that I can make it up there with no problems. I'm more worried about the car ride. If I don't eat while at convention, I won't be sick. I know that sounds absolutely horrible. I didn't each much before or after the wedding, so I didn't get sick like normal. So, I'm going to have to monitor myself very closely with food. Most of the time, I'm not hungry anyway. But, social conventions seem to be centered around food and drinking. I can't do either.
I just took:
1 pain pill
2 anti-spasmotic pills
1 anxiety pill
1 muscle relaxer
2 anti-nausea pills
Between all of those, and I hope I can keep those down, hopefully I'll go back to sleep. I just hate waking up with that immediate need to be sick. And, as per usual, I whacked my knee on the side of the toilet again.
I just want to feel better. I'm going to call and make an appointment with the motility specialist. She's at Crawford Long, so that's a bit closer to me to get to. When I do drive, I have to drive around with a bucket. I've gotten pretty good at vomiting outside of moving cars though. I don't feel safe driving because I might get sick while I'm driving.
I need to find a primary care doctor closer to my house as well. I feel bad just walking in and saying, "Hey, I've got gastroparesis and I'm your new patient!" I would like all of my records in one place, though. My knee records, my stomach records, my records from my old primary care doctor. I feel as though my medical records are scattered all across Atlanta.
I have to say that it was good to leave the house for a little bit. I've been confined here since March since my GP has been so severe. I slept on the car ride back because the nausea started to hit. Then, I went to bed and didn't wake up until about 10pm or so. This new medication knocks me out.
The medicine that helps the most is the muscle relaxer. It relaxes my stomach enough for me to eat and not be in as much pain.I don't know if they'll keep me on it or not but it's the only thing that seems to help.
Maybe one day this Summer, I will get to go to the beach! I miss the salty smell of the air... there's nothing quite like it. I'm leaving Wednesday or Thursday for a car ride up to Connecticut for convention for my fraternity with my friends. I hope that I can make it up there with no problems. I'm more worried about the car ride. If I don't eat while at convention, I won't be sick. I know that sounds absolutely horrible. I didn't each much before or after the wedding, so I didn't get sick like normal. So, I'm going to have to monitor myself very closely with food. Most of the time, I'm not hungry anyway. But, social conventions seem to be centered around food and drinking. I can't do either.
Saturday, June 16, 2012
The Wedding
Somehow, I made it through the wedding without being sick. I only ate a small amount, so that probably helped. However, the little I did eat, is causing some pretty intense stomach pain. It burns horribly and feels like I've been punched. But, that's not new.
The wedding was amazing! I even managed to get up and do the electric slide with friends. I haven't been able to dance in a while, so that made me extremely happy.
Right now, I'm trying to ignore the pain in my stomach. I am bloated and crampy. I just took my anti-spasmodic medication in hopes that it helps. I feel extremely tired and fatigued. I haven't eaten too much today but I've been trying to drink lots of water. I really could lay down and go to sleep, if my stomach would let me.
But, I have to be social for a few more hours. That's not a bad thing, but I just need my stomach to cooperate. At least I didn't throw up at the reception or during the wedding.
I'm still miserably hungry but I don't want to make myself even more ill. My medication needs to kick in first, before I can do anything. My stomach medicine also makes me sleepy. Well, one step at a time, I guess.
The picture below is of us after the wedding. I'm in the purple.
The wedding was amazing! I even managed to get up and do the electric slide with friends. I haven't been able to dance in a while, so that made me extremely happy.
Right now, I'm trying to ignore the pain in my stomach. I am bloated and crampy. I just took my anti-spasmodic medication in hopes that it helps. I feel extremely tired and fatigued. I haven't eaten too much today but I've been trying to drink lots of water. I really could lay down and go to sleep, if my stomach would let me.
But, I have to be social for a few more hours. That's not a bad thing, but I just need my stomach to cooperate. At least I didn't throw up at the reception or during the wedding.
I'm still miserably hungry but I don't want to make myself even more ill. My medication needs to kick in first, before I can do anything. My stomach medicine also makes me sleepy. Well, one step at a time, I guess.
The picture below is of us after the wedding. I'm in the purple.
Wednesday, June 13, 2012
The Knee Doctor & GP
I managed to wake up early for an appointment with my knee doctor. I explained to him that I have been having issues with my left knee, which the gastroparesis has made worse because I keep knocking it into the toilet. He is going to send me to a pain management specialist. He says I might need an epidural or something that he is not qualified to preform.
I've only vomited three times today, which I consider a great achievement. I also found out that Dinty More is gluten free, which makes me happy! I love beef stew. I ate a small amount of it because my stomach won't tolerate much more than that.
So, the doctor put me on Hydrocodone 7.5/500 and Zanaflex 4mg. I know that the Hydrocodone can cause slow gastric emptying as well but I'm in so much pain that I need something to control it so that I can sleep. The Zanaflex actually does wonders for my stomach and has gotten all of the cramps to relax a bit. I hope that I'll be able to sleep normally tonight.
In the morning, my GI doctor will go over my biopsy results from my colonoscopy. He said everything looked normal, so I'm not going to worry myself about it just yet. He is also making me an appointment with a motility specialist, we'll see how that goes. My husband thinks that I should give acupuncture a try. I've never done that before but I'm open to almost anything if it will make my stomach stop hurting.
I'm still on the search for a new General Practitioner. I need a doctor close to my house. The hard part is going to be trying to track down all of my medical records for her office. I don't even want to think about that right now.
I've only vomited three times today, which I consider a great achievement. I also found out that Dinty More is gluten free, which makes me happy! I love beef stew. I ate a small amount of it because my stomach won't tolerate much more than that.
So, the doctor put me on Hydrocodone 7.5/500 and Zanaflex 4mg. I know that the Hydrocodone can cause slow gastric emptying as well but I'm in so much pain that I need something to control it so that I can sleep. The Zanaflex actually does wonders for my stomach and has gotten all of the cramps to relax a bit. I hope that I'll be able to sleep normally tonight.
In the morning, my GI doctor will go over my biopsy results from my colonoscopy. He said everything looked normal, so I'm not going to worry myself about it just yet. He is also making me an appointment with a motility specialist, we'll see how that goes. My husband thinks that I should give acupuncture a try. I've never done that before but I'm open to almost anything if it will make my stomach stop hurting.
I'm still on the search for a new General Practitioner. I need a doctor close to my house. The hard part is going to be trying to track down all of my medical records for her office. I don't even want to think about that right now.
Tuesday, June 12, 2012
Isolation & Sadness
I managed to sleep most of the day. I feel exhausted and lethargic. I was able to keep some of my anti-nausea medications down, at least.
G-Pact has a lot of great information about my disease that you can read about. You should read the information listed there to understand what I'm dealing with and going through.
I have to take things day by day.
This illness can be a very isolating one.
This illness can affect one's quality of life because of the depression and isolation that comes with it. It is also frustrating as well that it can be hard to predict what I can do from day to day. I know I have had days when even what is usually the safest for me still aggravates my digestive system. I can't tell you how guilty I feel for not being able to do things or even go to a movie with my friends. I really want to, but I'm not physically able. My heart is in the right place, but making me feel worse about it doesn't help. Trust me, I guilt trip myself enough without any help.
There can be a fear of the unknown. Unfortunately sometimes this fear can lead to my friends getting hurt by assumptions or misunderstandings. Maybe I should offer to let them come to the doctor with me so that they can hear the things I'm actually dealing with.
My whole world shrinks because I become more limited in what I can do. I need to have gatherings at my place right now if my friends want to hang out because car rides make me sicker and I have to ride around with a bucket. I'm just not sure how to address the problem. I want to feel better but the thought alone isn't going to magically fix my stomach paralysis.
I meet with the doctor on Wednesday. I hope he'll be able to give me by biopsy results and help me figure out the next step to take.
G-Pact has a lot of great information about my disease that you can read about. You should read the information listed there to understand what I'm dealing with and going through.
I have to take things day by day.
This illness can be a very isolating one.
This illness can affect one's quality of life because of the depression and isolation that comes with it. It is also frustrating as well that it can be hard to predict what I can do from day to day. I know I have had days when even what is usually the safest for me still aggravates my digestive system. I can't tell you how guilty I feel for not being able to do things or even go to a movie with my friends. I really want to, but I'm not physically able. My heart is in the right place, but making me feel worse about it doesn't help. Trust me, I guilt trip myself enough without any help.
There can be a fear of the unknown. Unfortunately sometimes this fear can lead to my friends getting hurt by assumptions or misunderstandings. Maybe I should offer to let them come to the doctor with me so that they can hear the things I'm actually dealing with.
My whole world shrinks because I become more limited in what I can do. I need to have gatherings at my place right now if my friends want to hang out because car rides make me sicker and I have to ride around with a bucket. I'm just not sure how to address the problem. I want to feel better but the thought alone isn't going to magically fix my stomach paralysis.
I meet with the doctor on Wednesday. I hope he'll be able to give me by biopsy results and help me figure out the next step to take.
Monday, June 11, 2012
Frustrations
Well, I woke up with pink eye - or some kind of eye infection. I haven't thought to change my contacts because I've been so worried about the nausea, vomiting, and pain. I guess this will teach me to ignore my eyes!
I just want to vent my frustrations. I think my friends are frustrated with me because there's nothing they can do to help me and this illness makes me a bit flaky. I'm at the mercy of my stomach and I have good days and bad. Today is a bad day, as was yesterday. I really can't predict how my stomach will act on a given day. I can't leave my house because I need to be near a bathroom and vomiting in public is not my idea of fun. It's not that I don't want to go out and do things, I would love to! I wish that I wasn't at the mercy of my stomach. It sucks when your major organs decide to fail you.
All I can ask is for some understanding and patience - and I know that's asking a lot. Trust me, I'm just as frustrated as you are, if not more. I like being a social butterfly! I really, really do! I was hoping to have the Summer to kind of recouporate and figure out a good way for me to manage the gastroparesis.
I really am doing my best to make it to meetings,advisement, and other things this semester. I feel like everyone's had a vacation but me - because I'm constantly dealing with this stomach issue. I feel like if I can't make something, people get really mad at me. But if they miss something, it's not a big deal. I just want to know what it's such a double standard? Don't I deserve a break too? This is why I didn't run for any officer positions in clubs this year because I can't physically handle it right now. I need to step back and let other people run things so that I can work on myself. Believe me, that's hard for me to do but I can't help it at this point. I need to heal and to find a medication that works for me and I need for my friends to be patient with me a little longer. <3
I just want to vent my frustrations. I think my friends are frustrated with me because there's nothing they can do to help me and this illness makes me a bit flaky. I'm at the mercy of my stomach and I have good days and bad. Today is a bad day, as was yesterday. I really can't predict how my stomach will act on a given day. I can't leave my house because I need to be near a bathroom and vomiting in public is not my idea of fun. It's not that I don't want to go out and do things, I would love to! I wish that I wasn't at the mercy of my stomach. It sucks when your major organs decide to fail you.
All I can ask is for some understanding and patience - and I know that's asking a lot. Trust me, I'm just as frustrated as you are, if not more. I like being a social butterfly! I really, really do! I was hoping to have the Summer to kind of recouporate and figure out a good way for me to manage the gastroparesis.
I really am doing my best to make it to meetings,advisement, and other things this semester. I feel like everyone's had a vacation but me - because I'm constantly dealing with this stomach issue. I feel like if I can't make something, people get really mad at me. But if they miss something, it's not a big deal. I just want to know what it's such a double standard? Don't I deserve a break too? This is why I didn't run for any officer positions in clubs this year because I can't physically handle it right now. I need to step back and let other people run things so that I can work on myself. Believe me, that's hard for me to do but I can't help it at this point. I need to heal and to find a medication that works for me and I need for my friends to be patient with me a little longer. <3
Sunday, June 10, 2012
Stomach Spasms
I managed to finally get some sleep but I slept all day. It's raining outside, so that may have helped some.
When I woke up, I felt like I had taken a long drive into the stomach. It's weird. I've also had spasms that feel like the nerve study I had from my stomach, but they make my whole body jump. It's a weird pins and needles feeling (like when your foot falls asleep) but it also has intense burning pain. I have also had esophageal spasms which radiate around my back. With those, it almost feels like I"m having a heart attack. I've been tempted to go to the emergency room but there's nothing they can do. The pain is preventing me from sleeping and the vomiting makes it much worse.
Right now, my throat is swollen and scratchy. It sounds like I'm talking to people through a box fan. I just ate some gluten free pasta and I'm hoping I'll be able to keep that down. It already burns like crazy. It's weird because the top of my stomach burns. Also, the bottom left part of my abdomen hurts ... but that's a new pain.
I'm just happy I was able to get some rest. A good night's sleep really makes a difference. My stomach did behave while I was sleeping and didn't wake me up. However, I feel hung over and still tired. I have no energy. I hope the food will stay down so that won't be a problem. I'm also going to drink lots of water and hope some of it stays down.
Well, let's hope the food stays down. Cross your fingers for me! <3
When I woke up, I felt like I had taken a long drive into the stomach. It's weird. I've also had spasms that feel like the nerve study I had from my stomach, but they make my whole body jump. It's a weird pins and needles feeling (like when your foot falls asleep) but it also has intense burning pain. I have also had esophageal spasms which radiate around my back. With those, it almost feels like I"m having a heart attack. I've been tempted to go to the emergency room but there's nothing they can do. The pain is preventing me from sleeping and the vomiting makes it much worse.
Right now, my throat is swollen and scratchy. It sounds like I'm talking to people through a box fan. I just ate some gluten free pasta and I'm hoping I'll be able to keep that down. It already burns like crazy. It's weird because the top of my stomach burns. Also, the bottom left part of my abdomen hurts ... but that's a new pain.
I'm just happy I was able to get some rest. A good night's sleep really makes a difference. My stomach did behave while I was sleeping and didn't wake me up. However, I feel hung over and still tired. I have no energy. I hope the food will stay down so that won't be a problem. I'm also going to drink lots of water and hope some of it stays down.
Well, let's hope the food stays down. Cross your fingers for me! <3
Saturday, June 9, 2012
I Forgot to Eat
I managed to forget to eat today. Since I was up all last night vomiting, I took a long nap today. When I woke up, I realized I missed my dosage of medication. Now, it feels like my stomach has been sucker punched (bad cramps) with an overlay of burning.
I'm trying to eat a baked potato in hopes that it will stay down. I need something on my stomach to vomit because vomiting stomach acid hurts. Also, I'm a bit worried about my teeth. What effect will all of this vomiting have on my teeth?
I wish I could control this pain. The pain goes overlooked by my doctor because the vomiting takes priority. I'm also scared that it's nerve pain and if it is, there's nothing I can really do about it. Nerve pain is hard to treat.
I'm trying to eat a baked potato in hopes that it will stay down. I need something on my stomach to vomit because vomiting stomach acid hurts. Also, I'm a bit worried about my teeth. What effect will all of this vomiting have on my teeth?
I wish I could control this pain. The pain goes overlooked by my doctor because the vomiting takes priority. I'm also scared that it's nerve pain and if it is, there's nothing I can really do about it. Nerve pain is hard to treat.
Information about Gastroparesis (GP)
GPACT - has wonderful information regarding diets, treatments, and awareness.
Medtronic - Home page of Medtronic. "Medtronic is the world's leading medical technology company, providing lifelong solutions for people with chronic disease". Medtronic is the manufacturer of the gastric pacemaker for GP now being implanted in medical centers nationwide.
Gastroparesis Group on Yahoo - Online support group for people of all ages, severities, and causes of gastroparesis. Friends and Family are welcome as well. Group managed by five, most of whom have GP personally. Founded Dec. 12, 2000 and has almost 3,000 members from all over the world.
Pediatric Gastric Support - Online support group for parents of kids with gastroparesis.
GPACT for Teens - Online support group for teens with GP to interact with others their age and share stories. This group is run by two teens.
Government Info - Gastroparesis and Diabetes. Excellent site with good information even if you are not diabetic.
Oley - The Oley Foundation which provides information and resources on nutritional support needs
Medicine Net - This is a very extensive site for most medical conditions. In order to access info on gastroparesis choose diseases and conditions from the home page, then choose the letter G and scroll down until you find gastroparesis. The site is very extensive and clear.
Health Central Site - Health Central site with good info on gastroparesis
Medtronic - Home page of Medtronic. "Medtronic is the world's leading medical technology company, providing lifelong solutions for people with chronic disease". Medtronic is the manufacturer of the gastric pacemaker for GP now being implanted in medical centers nationwide.
Gastroparesis Group on Yahoo - Online support group for people of all ages, severities, and causes of gastroparesis. Friends and Family are welcome as well. Group managed by five, most of whom have GP personally. Founded Dec. 12, 2000 and has almost 3,000 members from all over the world.
Pediatric Gastric Support - Online support group for parents of kids with gastroparesis.
GPACT for Teens - Online support group for teens with GP to interact with others their age and share stories. This group is run by two teens.
Government Info - Gastroparesis and Diabetes. Excellent site with good information even if you are not diabetic.
Oley - The Oley Foundation which provides information and resources on nutritional support needs
Medicine Net - This is a very extensive site for most medical conditions. In order to access info on gastroparesis choose diseases and conditions from the home page, then choose the letter G and scroll down until you find gastroparesis. The site is very extensive and clear.
Health Central Site - Health Central site with good info on gastroparesis
Invisible Illness Survey
Invisible Illness Challenge
1.) The illness I live with is:
Idiopathic Gastroparesis & Gastroesophageal Reflux Disorder
2.) I was diagnosed with it in the year:
2012
3.) But I had symptoms since:
This is tricky to answer. I vomited A LOT in high school but it was contributed to ovarian cysts, since my pain response IS to vomit. However, in late February this year, I thought I had a stomach virus. Then, the stomach virus didn't go away for a few weeks. I was vomiting at least 8 times a day, if not more.
4.) The biggest adjustment I’ve had to make is:
Eating. Eating was never something I had to worry about. I have to watch what I eat. I can’t eat certain things and I can’t eat as much. I feel tired because I’m not getting everything I should from the food that I eat because it won’t ever digest properly. Also, adjusting to a gluten free diet is really hard because EVERYTHING has gluten in it. I also really like fruits and veggies and I can no longer eat those. =(
5.) Most people assume:
That this is all in my head. They think that I choose to stay home because I don't want to be social, but that's not it at all. This isn't in my head and I don't leave the house because it's embarrassing throwing up so much and in public. Although, I have gotten really good at vomiting out of a moving car.
6.) The hardest part about mornings are:
Waking up nauseated. I have to quickly shove down the antinausea pills and then pray that they work. It's also horrible to wake up and immediately vomit. Also, it's hard for me to sleep because of all of the vomiting so my sleep schedule is all over the place.
7.) My favorite medical TV show is:
Does Bones count? Also, I really like House and I'm sad it's off of the air now.
8.) A gadget I couldn’t live without is:
My laptop. It lets me talk with my friends over Skype and Facebook. The Internet keeps me distracted so that I don't focus on the pain in my stomach. One of my friends was hosting a movie night and was kind enough to stream it so that I could participate without leaving my house. I know some awesome people.
9.) The hardest part about nights is:
Esophageal spasms, stomach nerve pain, and stomach spasms. They are probably the most painful thing I’ve ever experienced. I have read that the pain is similar to a heart attack - often people mistakenly head to the ER with esophageal spasms because they think that’s what’s happening. It seizes my chest and it feels like a bunch of needles stabbing at once. I have to say that I've cried more than once because it's so severe. It's even more intense after I try to eat something or drink water. I'm on medication to control the spasms but sometimes I don't take it soon enough or it just happens too quickly.
10.) Each day I take:
Two nausea pills, two anti-spasmodics, an anti-anxiety pill, and an acid reflux pill.
11.) Regarding alternative treatments:
The medication isn't working. I haven't tried the electrical stimulator or the botox injections yet. I am also seeing a motility specialist next week to go over more treatment options.
12.) If I had to choose between an invisible illness or visible I would choose:
Visible. It’s hard to explain my illness to people. They don’t understand how crippling it can be. It's easier to have something they understand.
13.) Regarding working and career:
I haven't been able to leave my house for school or social reasons. I was hospitalized for eight days during Spring semester (I'm a student) and I will now have to apply for a hardship withdrawal. I'm not sure about the future. I might take one class in the fall while I try to sort everything out ... but that's up to my stomach.
14.) People would be surprised to know:
That gastroparesis actually isn’t even that rare, so it’s surprising that more people haven’t at least heard of it. An estimated 5 million Americans have it, and of course there are so many people out there that have it and have not been diagnosed.
15.) The hardest thing to accept about my new reality has been:
That it's permanent. I may be on this medication forever and it makes me scared that the medication will lose their effect the more I take them over time. I will have to permanently not eat like I used to. That’s hard to accept. I live in the South and in Southern culture, food is everything. Sometimes I feel ashamed for being so upset about that fact, because my gastroparesis doesn't compare to things like cancer.
16.) Something I never thought I could do with my illness that I did was:
I had one good day about a month ago and was able to leave my house for a drive to the pharmacy. I was really proud of myself!
17.) The commercials about my illness:
I haven't seen any. I never knew gastroparesis existed until I was in the hospital. I really just thought I was dehydrated with a stomach virus. I do see GPACT posts on Facebook though.
18.) Something I really miss doing since I was diagnosed is:
Where do I start? Hiking, hanging out with friends, going to the movies (I haven't been able to see MIB3, The Avengers, Cabin in the Woods, Snow White and the Huntsman, and I'm probably not going to be able to see The Dark Knight Rises or Abraham Lincoln, Vampire Hunter), eating chocolate, eating at my favorite restaurants, camping, drives to the mountains, going to the park, and going on dates with my husband, playing video games (they make me motion sick now).
19.) It was really hard to give up:
Chocolate, fruit, and soda.
20.) A new hobby I’ve taken up since my diagnosis is:
Blogging. It helps me vent about my frustrations and experiences with this illness. I hope it will also help people who have been newly diagnosed. They can learn from my mistakes.
21.) If I could have one day of feeling normal again, I would:
I would go and eat at one of my favorite restaurants and drink a cosmo! Then, I would hike around my favorite park and look at the geology. I would also hit up a movie with friends or go swimming. I can't tell you how bad I want to be at the beach.
22.) My illness has taught me:
That I'm a strong person and not to take anything for granted. You don't realize what you're taking for granted until it's gone.
23.) Want to know a secret? One thing that people say that gets under my skin is:
“It's all in your head." Or, they think I'm depressed and sitting in my house because I want to. Not true at all. I hate being guilt tripped for being sick, too.
24.) But I love it when people:
Actually care. They come over to spend time with me and bring games and movies to hang out. It really does mean a lot. <3 25.) My favorite motto, scripture, quote that gets me through tough times is: A poem by Richard Kipling, "If."
26.) When someone is diagnosed I’d like to tell them:
It's not in your head. Hang in there. You will be a stronger person because of this. Also, you're not alone.
27.) Something that has surprised me about living with an illness is:
I am amazed at how many people have gastroparesis! It wasn't as rare as I thought it was. It's also surprising that I can't leave my house because it's so severe. I never expected to be on house arrest.
28.) The nicest thing someone did for me when I wasn’t feeling well was:
My husband and roommates have gone out of their way to buy me food that I can actually eat. We take turns cooking and they're always considerate and keep me in mind when doing so. My friends have been supportive. They have offered to drive me to doctor's appointments so that I can vomit into a bucket. They also come over and keep me company. My husband stays home with me to keep me company as well. My family has been supportive as well. They're there when I need to talk and they have done research on my illness to make sure I'm asking my doctors the right questions and for treatment options.
29.) I’m involved with Invisible Illness Week because:
Raising awareness is key. People don't understand this illness and the more we educate, the more it might lead to a cure.
30.) The fact that you read this list makes me feel:
Loved. Thank you for taking the time to read my responses. It does mean a lot to me. I need to get this all out in the open to keep my sanity!
1.) The illness I live with is:
Idiopathic Gastroparesis & Gastroesophageal Reflux Disorder
2.) I was diagnosed with it in the year:
2012
3.) But I had symptoms since:
This is tricky to answer. I vomited A LOT in high school but it was contributed to ovarian cysts, since my pain response IS to vomit. However, in late February this year, I thought I had a stomach virus. Then, the stomach virus didn't go away for a few weeks. I was vomiting at least 8 times a day, if not more.
4.) The biggest adjustment I’ve had to make is:
Eating. Eating was never something I had to worry about. I have to watch what I eat. I can’t eat certain things and I can’t eat as much. I feel tired because I’m not getting everything I should from the food that I eat because it won’t ever digest properly. Also, adjusting to a gluten free diet is really hard because EVERYTHING has gluten in it. I also really like fruits and veggies and I can no longer eat those. =(
5.) Most people assume:
That this is all in my head. They think that I choose to stay home because I don't want to be social, but that's not it at all. This isn't in my head and I don't leave the house because it's embarrassing throwing up so much and in public. Although, I have gotten really good at vomiting out of a moving car.
6.) The hardest part about mornings are:
Waking up nauseated. I have to quickly shove down the antinausea pills and then pray that they work. It's also horrible to wake up and immediately vomit. Also, it's hard for me to sleep because of all of the vomiting so my sleep schedule is all over the place.
7.) My favorite medical TV show is:
Does Bones count? Also, I really like House and I'm sad it's off of the air now.
8.) A gadget I couldn’t live without is:
My laptop. It lets me talk with my friends over Skype and Facebook. The Internet keeps me distracted so that I don't focus on the pain in my stomach. One of my friends was hosting a movie night and was kind enough to stream it so that I could participate without leaving my house. I know some awesome people.
9.) The hardest part about nights is:
Esophageal spasms, stomach nerve pain, and stomach spasms. They are probably the most painful thing I’ve ever experienced. I have read that the pain is similar to a heart attack - often people mistakenly head to the ER with esophageal spasms because they think that’s what’s happening. It seizes my chest and it feels like a bunch of needles stabbing at once. I have to say that I've cried more than once because it's so severe. It's even more intense after I try to eat something or drink water. I'm on medication to control the spasms but sometimes I don't take it soon enough or it just happens too quickly.
10.) Each day I take:
Two nausea pills, two anti-spasmodics, an anti-anxiety pill, and an acid reflux pill.
11.) Regarding alternative treatments:
The medication isn't working. I haven't tried the electrical stimulator or the botox injections yet. I am also seeing a motility specialist next week to go over more treatment options.
12.) If I had to choose between an invisible illness or visible I would choose:
Visible. It’s hard to explain my illness to people. They don’t understand how crippling it can be. It's easier to have something they understand.
13.) Regarding working and career:
I haven't been able to leave my house for school or social reasons. I was hospitalized for eight days during Spring semester (I'm a student) and I will now have to apply for a hardship withdrawal. I'm not sure about the future. I might take one class in the fall while I try to sort everything out ... but that's up to my stomach.
14.) People would be surprised to know:
That gastroparesis actually isn’t even that rare, so it’s surprising that more people haven’t at least heard of it. An estimated 5 million Americans have it, and of course there are so many people out there that have it and have not been diagnosed.
15.) The hardest thing to accept about my new reality has been:
That it's permanent. I may be on this medication forever and it makes me scared that the medication will lose their effect the more I take them over time. I will have to permanently not eat like I used to. That’s hard to accept. I live in the South and in Southern culture, food is everything. Sometimes I feel ashamed for being so upset about that fact, because my gastroparesis doesn't compare to things like cancer.
16.) Something I never thought I could do with my illness that I did was:
I had one good day about a month ago and was able to leave my house for a drive to the pharmacy. I was really proud of myself!
17.) The commercials about my illness:
I haven't seen any. I never knew gastroparesis existed until I was in the hospital. I really just thought I was dehydrated with a stomach virus. I do see GPACT posts on Facebook though.
18.) Something I really miss doing since I was diagnosed is:
Where do I start? Hiking, hanging out with friends, going to the movies (I haven't been able to see MIB3, The Avengers, Cabin in the Woods, Snow White and the Huntsman, and I'm probably not going to be able to see The Dark Knight Rises or Abraham Lincoln, Vampire Hunter), eating chocolate, eating at my favorite restaurants, camping, drives to the mountains, going to the park, and going on dates with my husband, playing video games (they make me motion sick now).
19.) It was really hard to give up:
Chocolate, fruit, and soda.
20.) A new hobby I’ve taken up since my diagnosis is:
Blogging. It helps me vent about my frustrations and experiences with this illness. I hope it will also help people who have been newly diagnosed. They can learn from my mistakes.
21.) If I could have one day of feeling normal again, I would:
I would go and eat at one of my favorite restaurants and drink a cosmo! Then, I would hike around my favorite park and look at the geology. I would also hit up a movie with friends or go swimming. I can't tell you how bad I want to be at the beach.
22.) My illness has taught me:
That I'm a strong person and not to take anything for granted. You don't realize what you're taking for granted until it's gone.
23.) Want to know a secret? One thing that people say that gets under my skin is:
“It's all in your head." Or, they think I'm depressed and sitting in my house because I want to. Not true at all. I hate being guilt tripped for being sick, too.
24.) But I love it when people:
Actually care. They come over to spend time with me and bring games and movies to hang out. It really does mean a lot. <3 25.) My favorite motto, scripture, quote that gets me through tough times is: A poem by Richard Kipling, "If."
26.) When someone is diagnosed I’d like to tell them:
It's not in your head. Hang in there. You will be a stronger person because of this. Also, you're not alone.
27.) Something that has surprised me about living with an illness is:
I am amazed at how many people have gastroparesis! It wasn't as rare as I thought it was. It's also surprising that I can't leave my house because it's so severe. I never expected to be on house arrest.
28.) The nicest thing someone did for me when I wasn’t feeling well was:
My husband and roommates have gone out of their way to buy me food that I can actually eat. We take turns cooking and they're always considerate and keep me in mind when doing so. My friends have been supportive. They have offered to drive me to doctor's appointments so that I can vomit into a bucket. They also come over and keep me company. My husband stays home with me to keep me company as well. My family has been supportive as well. They're there when I need to talk and they have done research on my illness to make sure I'm asking my doctors the right questions and for treatment options.
29.) I’m involved with Invisible Illness Week because:
Raising awareness is key. People don't understand this illness and the more we educate, the more it might lead to a cure.
30.) The fact that you read this list makes me feel:
Loved. Thank you for taking the time to read my responses. It does mean a lot to me. I need to get this all out in the open to keep my sanity!
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