Find us on Google+ Gastroparesis: November 2012

Friday, November 30, 2012

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.

Monday, November 26, 2012

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.

Thursday, November 22, 2012

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.








Monday, November 19, 2012

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.

Thursday, November 1, 2012

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.