Follow up with my Spinal Cord Stimulator Doctor

About a month and a half ago, I felt it shift when I bent over to vomit. Since then, it's caused me nothing but pain. I followed up with the PA on Friday, and she did trigger point injections all around the stimulator site to ease up some of the more tense muscles. I cried because it hurt so badly. She told me to follow up with the doctor on Monday, so I did. I went and saw the spinal cord stimulator doctor yesterday, the same doctor who put it in for me. He confirmed what I said, that it had shifted. Instead of lying flat, like it's supposed to, instead, it is more of a 90 degree angle. He scheduled me for back surgery on Monday at 3:30 EST. He said that they'll try and put it back where it was but more than likely, they would have to make a new incision and put it somewhere else. I guess it didn't heal enough and the gastroparesis made it worse. So, now, I have back surgery on Monday and I'm nervous, even though I've had it done before. The last time I was put under anesthesia, I died twice. So, definitely nervous this time. But, I'll get through it, I always do! I'll let you guys know how the surgery goes. Below is a picture of my stimulator. You can see how badly it's sticking out. I wish I could take a better picture but it's almost in such an awkward place in my back that it's hard for me to get a good shot of it.

What is the spinal cord stimulator for, you ask? In 2009, while at field camp, I lost my footing and slid down a mountain on my knees. They couldn't find anything wrong with my knees except for nerve damage. The stimulator is like having a TENS unit in your back, and it blocks out the pain signals of the nerves for relief. It reroutes the pain signals so that my knees and back shouldn't hurt anymore. It does help, tremendously and allowed me to hike again until I kept bending over to vomit and knocked it out of place.

You can read more about it here: http://www.webmd.com/back-pain/spinal-cord-stimulation-for-low-back-pain

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.

Updates on GP Management

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

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

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

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

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

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

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

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

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

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

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