Surgery Update--Bye, Alfred!

Today, March 31, 2016 I had my gastric neurostimulator removed. I affectionate a named him Alfred after the butler in Batman figuring he would be my right hand man. Instead, Alfred didn't really help me at all. 

Alfred was placed August 2014 in the hopes of blocking the signal of nausea to my brain which, in turn, would cause less vomiting, which in turn would help me eat more. It didn't. I went into surgery weight around 177lbs. By the time I was entering my most recent crisis on March 1, 2016 I had dropped to 165lbs. Today before surgery began to removed Alfred, I had dropped to 155lbs. Clearly my right hand man had fallen asleep on the job. 

It's always a difficult discion to have a device implanted in you--it's a foreign object, hello!--but it's just as difficult to decide to remove it, even when it hasn't helped you in well over a year. The reason for this is that you feel like a failure. 

You've failed Reglan

You've failed Domperidone. 

Linzess isn't exactly working right either. 

And now you've failed the gastric neurostimulator. 

Internally you know you have ZERO control over it, but it's a blow to the ego, the psyche, your morale. You just want your life back, to work, to have a hamburger...but now you just don't know what to do. 

I know that I just need to keep pressing on. Trusting the process and doing my part by consuming what nutrition I can handle at this point to keep my body running. It's not easy...! But I know that's what I have to do. 

Boost is disgusting and the Boost Breezes are SOOO sickeningly sweet they're hard to drink. Ensure Clear are good, so I try and drink those. But Instant Breakfast in the bottle have a higher vitamin and protein count than Boost or Ensure, so I've been drinking that more. I recommend Ensure Clear and Instant Breatast in the bottle, they taste good. 

I hope that NOBODY has to go through this kind of nonsense. It's not easy and it's not fun. But for those that do, I'm here for you and we all have each other. 

Things I Wish People WOULD Say To Me

Having a Chronic Illness is really, quite possibly, one of the most awkward things to enter your life. Akin to a "Kick Me" sign on your back or a big booger hanging from your nose that nobody bothers telling you about, it's just socially something many people do not know how to handle. "What if I say the wrong thing?" Is something that I'm sure runs through the minds of many peoples' minds--or maybe not, based on the strange, random, and rude things I've been asked, told, and suggested; but I digress. 

Often times people with Chronic Illnesses dwell or warn againt the negative, "DON'T say/do thus and so..." but then we never bother to give you the other side of the coin and tell you things we wish people WOULD say or do for us. And, I think, it's because we so often dwell on the DONT

and "I rather you didn'ts" that so many of our friends are scared away. 

Come back, dear friends, because here is (my personal), list of::

A FEW THINGS I WISH PEOPLE WOULD DO::

1. Ask how my health is, not how are you but how is your health? And then listen with intent and purpose. So many times it feels as if, when asked by friends, we aren't being listened to because we are reporting much the same thing to you (nausea, fatigue, vomiting, doctors visits, etc) but that is the mundane routine of our lives a lot of the time. We know and understand that you want us to be better, 

WE want to be better, but, for the majority us, it's not going to be mediconed, protein shaked, deep tissue massaged, or surgery-ed away, it's just...life. 

2. I wore [insert color here] in support of you and your disease and posted it on social media today because I know your disease is rare. I know that this might seem trivial, but it's not! It means that you're thinking about me, you're thinking about the cause at large, and you're thinking about getting the word out there. Every little bit helps, right?!

3. Would you like ME to come visit YOU? I live in the middle of nowhere. I know this. I've lived here since the dawn of time. Nobody wants to drive here, but somehow the distance becomes shorter when I have to drive to someone else. It would be awesome to have a person come and visit me, knowing that merely getting ready makes me tired (I don't know that I've ever said that out loud before). 

4. I looked up [insert disease(s) here] to hopefully better understand. The willingness of a friend to take the time to look up another's disease(s) to try and better understand what they're going through means a lot. You can only learn so much can through the Internet, but it still shows a willingness to learn and not just ASSUME things. 

5. I was thinking of your recently, so I dropped a card in the mail, actual snail mail, so you should be getting it soon. Receiving a card in the mail, just because, is so awesome! Particularly for someone who is Chronically Ill. Getting that little pick-me-up at random can get us through a hard time better than any medication can (trust me, you'd be surprised). It shows that someone in the Outisde World is thinking of you. When you're so often sick, you start living in a bubble and it's all routine and humdrum, so a card can do wonders. 

I hope this list, in no particular order, sheds a little light onto what makes someone who is Chronically Ill smile. Being listened to, being supported, being visited, and randomly surprised (at least for this chick)...and chocolate never hurt anybody either!!!

A Quick Update

I know I've been quiet as of late and I apologize for that. Part of that is due to writer's block (ugh!) and part of that is due to being just so utterly sick. Since having Alfred turned off I have been quite ill and it's been horrible. Very horrible. 

I guess I didn't realize just how much Alfred was doing for me until he was gone.  It's like losing an old friend...you don't realize how much they mean to you until they're no longer around. I find myself continuously vomiting up anything I put into my mouth, whereas, with Alfred on, it was just a few times a week. 

Ugh! I detest Gastroparesis!

I'm venturing into the Land of Juicing to see if that has any effect on my condition before I ask to have Alfred reactived. I don't know if I'm doing myself any harm or favors by doing this, but it's worth a try. So far--only three or so days into it--I'm feeling zero change, but it takes time. 

I'll blog one day about juicing. 

I appreciate the support and prayers that I have received from around the world via Diary of A Gastroparesis Warrior. My hope is to continue spreading awareness about this horrible disease, get funding for it, and just let EVERYONE know that it's not just a simple stomach flu. 

Alfred...An Update.

The last week or so has been a whirlwind of ER visits, primary care visits, and surgical visits as well. All in the name of trying to figure out what my left sided pain is, see what's going on with Alfred--my Gastric Neurostimulator--and keep me kickin'! In between all of that was my birthday party and my actual birthday! What a mess!!

My primary care physician (PCP), didn't really think that it was a kidney infection that I had been suffering from, but intramuscular pain/costochondritis. She had me discontinue the Cephlex and try an antiinflamitory medicine instead to see if that would help matters. That still remains to be seen. 

In seeing my surgeon--which I do once a month for check-ups on Alfred--he decided to turn the Gastric Neurostimulator OFF to see if there's really any difference in my health. He said "sometimes patients think there's been no change with the device in and when we turn it off they realize, oh, there has been." So, only time will tell. It's only been 24 hours and I've noticed nothing. We also discussed the kidney infection/costocondritis debate of 2015 and he looked at my labs. He thinks it actually was a kidney infection, but to go ahead and continue with the antiinflamitory medication because it takes a solid week to take effect. 

It's really hard to wrap my head around the fact that the possibility is there that I've failed--yet AGAIN--at another medication/device that could possibly help my condition. But I have to just pick my head up and keep going. I CANNOT give up in this fight against Gastroparesis! I know that I am WAY better off than SO many of my GP Sisters out there, but it doesn't mean that I am any less frustrated. Part of me hopes that I have just been THINKING that Alfred hasn't been doing his job when, in reality, he has been. But it's going to take some time. 

Turned Down For What?! It's Shocking

Today was the "big" appointment with my surgeon, Dr. Marujjo, and the representative from Enterra, the company that makes Alfred, my Gastric Neurostimulator. Going into an appointment like that is like going into the original appointment, you just don't know what to expect, so you try to go in with a blank mind--not hard to do, I'm blond--open mind! I meant, open mind!

First of all, I was COMPLETELY distracted by the fact that the Enterra rep looked uncannily like John Legend, but that is really NOT pertinent to the story, I just had to share that little tidbit. He was very friendly and nice! 

On to the juicy stuff (that's not that juicy)...

Dr. Marujjo and Mr. Enterra (I can't remember his name) asked me where I've been experiencing the shocking at, so, as per usual when in that office, I lifted up my shirt. I explained to them that, like today, I experience shocks where my stomach (the organ) is, but I also experience shocks below my ribs right above where Alfred is. It doesn't HURT, it is just incredibly disruptive. 

I was then asked if there is a specific activity that causes the shocking to occur? I explained that I can be sitting, standing, or sleeping and it will start up. My stomach is nondiscriminatory about everything! 

Together, Dr. Marujjo and Mr. Enterra used the whizbang machine that's used every time I go in to check the settings and determined that it was best to lower the gigahertz, zapahertz, wowitreallyhertz...all the numbers that are discussed is Greek to me, so I just nod and smile and wait for it to be over. I know that Alfred was turned down. 

I worry about the shocking stopping. I worry about the nausea getting even worse than it already is now that Alfred has been turned down. It didn't dawn on me to ask whether or not Alfred might be defective, but I go in again in two weeks, so we shall see how things are going during that time. 

So, I guess time will only tell...

Alfred...An Update

I knew going in to getting Alfred that the surgery was a fifty-fifty chance of working. I think keeping that in mind has helped keep things in perspective for me. The last (nearly) six months have been...not what I had hoped, I suppose you could say. Things haven't been HORRID but they haven't been all sunshine and roses either. But what should you expect when putting a foreign body into your stomach, right?

Almost since the get-go when I would go to get Alfred turned up, he would be moved down to a default setting...all on his own--little stinker! The doctor would move him past the numbers he had put him at previously and then, when I would come back again, Alfred would be back at the default setting again. Stinker! 

Now, for the last month or more I've been experiencing spasms, shocks, ticks...I don't really know what to call them. They don't hurt, they're just annoying and bothersome. So now, come FEBRUARY 11th, I get to meet with the representative from Enterra, the company that makes my gastric neurostimulator to find out what might be going on. 

I haven't lost hope in Alfred...yet. Maybe he just needs a little kick in the pants or something. Or maybe a little switch to Alfred 2.0...I don't know. All I know is that I trust in God's plan for me. I have to! 

Feeling Twitchy

Everyone gets twitches in their muscles from time to time. Sometimes they're in the quad muscles...sometimes they're in the calf muscles...sometimes they're in the gluteus maximus muscles (that's your 
tooshie). The most annoying ones are facial twitches because they can be seen by those around you and, let's face it, you just look a bit strange. All twitches, no matter where they are or how long they last or how intense they are, are annoying and become uncomfortable. 

Off and on for the last three weeks I have been getting twitches or spasms in my stomach. Not my abdomen, but the actual organ! It is THE most uncomfortable and awkward feeling in the world! These twitches/spasms are strong enough that I have been woken up from them in the middle of the night!  I live with the disease Gastroparesis and because of the lack of treatments available I now have a gastric neurostimulator implanted and the leads go right into my stomach. I have no clue if the spasms I've been experiencing are due to my neurostimulator or if I just have a gnarly case of GERD.

Im not a Worst Case Scenario Wilma, so I'm treating it as a bad case of GERD at the moment, so myself and Prilosec have become besties. It's just a VERY odd sensation, let me tell you. I can feel my stomach beginning to twitch almost constantly and then when the big spasms happen...it impedes my ability to breathe. It's almost indescribable! 

I'm hoping the Prilosec will help, if not then I'll bring it up to my surgeon. I guess, until then, it's just one more story  in the Strange Things That Happen In Gastroparesisland Saga!

...And Then I Ended Up in the Emergency Room...Again

Everyone has to start off the New Year with a bang somehow, I just chose to do it by going to the ER! Yay! The pain that I had been experiencing from the kidney infection from 2 weeks ago had never really gone away and by last night (January 4), I felt like I was dying a miserable death. I hadn't really been eating--not that I ever really do--and what I had managed to consume was just coming right back up. Laying on my left side was torturous and felt like a puss sack or something was pushing toward the midline...graphic, I know. 

When we got home from church yesterday, I tried to take a nap, but it just wasn't happening. I told my mom that I thought I needed to pay the emergency room another visit. In an effort to save $100, we looked to see if I could make an appointment with my primary doctor and there was nothing available. I even looked for something over the next week and a half...nothing. So I bundled up and off we went. 

Luckily, this time, they took me right back and got me going. My vitals were a little high, for me, (125/75 and 79) and put me into a bed. I was put into an area with multiple beds and a security guard--should I have taken that as a hint--and asked to change. I was then asked for a urine sample [insert grumbling and grousing here]. The nurse started an IV and drew a TON of blood, like 8 viles worth, and then the wait was on for the doctor. 

When he came he told me he had looked at my history as far back as 2010 and had seen that I had "some stomach emptying issues" and wanted to know what was going on. I told him about having Gastroparesis and the gastric neurostimulator, that at first I thought that Alfred--my pacemaker--was helping 70% but now I feel I'm eating my words. I think he's only helped an eensie bit. He asked if I've had pain PRIOR to getting Alfred and I said "yes, there's pain associated with Gastroparesis. It's like stomach cramps with the flu ALL the time. This pain that I'm having now is different." He was very receptive and friendly, examined me and found nothing wrong. Based on his exam and past scans and the results of my blood, it turned out not to be my kidneys--yay--so he treated me symptomatically. 

The nurse came and hooked up a bag of fluids, gave me a shot of phenergan--that sucker hurt--and did a piggyback of a pain medication that I can neither spell nor pronounce--it turned out to be the first and only IV Tylenol there is. I was checked up on a while later by the doctor and still in pain, so he gave me morphine and that helped more--definitely made me sleepy--and sent me home. 

By the time I got home I was pretty out of it, but at least feeling a little better--not so nauseous. Hopefully, come Wednesday, my primary doctor will be able to figure out or have an idea as to what is causing that pain. 

It's hard deciding whether or not to go to the ER. On the one hand, you pretty much know that the only thing that's going to happen is fluids, nausea/vomiting meds, and pain medication and you wonder if it's worth spending $100 on that. But on the other hand, you just want the nonsense to stop so $100 doesn't seem like all that much. Oh, the conundrums we face in Gastroparesisland. 

Merry Christmas and Alfred Had Another Check-Up

Christmas was difficult for me this year, which sucks because I LOVE Christmas. I love Christmas for the music, the decorations, the weather, and the fact that we're celebrating the birth of our Lord and Savior, Jesus Christ. And I am a giver. I love giving people gifts. I love making things. But this year, I REALLY struggled with that due to visits to urgent care and the ER. My mom had to wrap presents for me this year because I just couldn't do it...and it tore me up. 

Christmas Eve I strapped on my happy face and interpreted for the Deaf at church, something I haven't been able to do in a while. My brother, Dustin and his girlfriend Amanda came and picked me up because I hadn't slept in almost a week at that point. Interpreting was exhausting, but fun to do. It was then off to my Aunt's with my family and some good friends to play games and eat and open presents. I think everyone had a really good time. I always enjoy Christmas Eve. 

Christmas was laid back. Spent, as usual, opening presents in the living room and then having our usual breakfast of biscuits and gravy and scrambled eggs. Sadly, I still hadn't slept nor did my breakfast sit well, so while the rest of my family went off to my uncle's house, I stand behind and tried to rest. It stinks that I missed out, but I think it was best for me. I was pretty weak. 

Today (December 26, 2014) I had an appointment with my surgeon, Dr. Marujjo. We addressed my ER visit and he suggested ditching the miralax and stick with taking dulcolax daily since it seems the miralax hasn't done anything much--if you catch my drift ::nudge nudge wink wink::  He also suggested drinking prune juice--OHMYGOSH--and going on a walk for half an hour. After that, Dr. Marujjo began the process of putting Alfred up a step. Again, it seems Alfred had, all by himself, reset himself or gone to default settings. He didn't seem too concerned about it, so with the help of his new senior resident, he changed the settings and that was it. We asked about putting into my chart that I may need help from time-to-time because I've been having trouble as of late but he said he doesn't really see me as a person who is bad off enough to need a parent on FMLA (Family Medical Leave Act). We told him about my not sleeping in a week and he asked me why and I told him that I had NO clue as to why, but he seemed nonplussed by it. With a reminder to use dulcolax, prune juice, and to walk he sent us on our way. 

Some seem to think that my lifestyle won't have to change much with Alfred in me, but my lifestyle has already been dramatically changed. Of course I have SOME limitations with the gastric neurostimulator, but nothing MAJORLY drastic, but it's the Gastroparesis that has changed my life forever. I think a lot of people have forgotten that since I live my life as normally as I possibly can. Let's be honest, my life has forever been changed because of this disease. 

Despite the uncooperativeness of my health, I still had a good Christmas. I spent it with people that I love and got WAY more than I could have possibly imagined--I got a zebra onesie! 

And guess what?! My next appointment is the day after my birthday! It seems like some sort of trend! Anyway, MERRY CHRISTMAS!

Merry Christmas and A Happy Trip to the ER!!

I CLEARLY know how to celebrate Christmas because my trip to Urgent Care on Saturday was, apparently, not enough. Today (December 22, 2014) I went to the Emergency Room. Initially, I thought it was going to be my Urgent Care experience all over again because the attendant checking people in took my card, asked me what was wrong, and then told me to sit down with everyone else. Internally I was thinking:: "Oh, no, not again!" Particularly when I sat down and there was people whistling--WHISTLING--in the waiting area. 

I got called back and had my vitals taken--lost 5lbs since my last weigh-in (not good)--and my blood pressure and heart rate was high for me (145/86 and 106) and--just to make it a little more special--my temperature was 99.1 (I'm normally a chilly 97.2). They put me in a room and bed, handed me a gown and blanket, and thus began my stay in Kaiser Riverside's Emergency Room. 

The doctor came and examined me after my IV was placed. He was honest and said that he didn't know much about my situation, so he would seek the help of the on-call thoracic surgeon once x-rays were taken. They gave me, intravenously, a shot of toridal and reglan, for pain and vomiting. After looking at my urine sample and blood, it came back that I had a pretty bad kidney infection--go big or go home! I ended up having to wait quite some time for x-rays, but I finally made it there. When I came back and my doctor consulted with the thoracic surgeon, they felt that my gastric neurostimulator was where it should be, but that my colon was pretty backed up--my parents always said I was pretty full of it! In the end, he said it was a good thing I came in and didn't put it off until Friday, which is when I see my surgeon again. The infection in my kidney would have been worse and who knows about my colon being backed up! 

I was sent home with an antibiotic and pain medication, and told to use miralax for a few days. I'm thankful that they looked and listened to what I had to say and didn't just sluff me off like urgent care did a couple of days again. I realize it's the holidays and people would prefer to be at home than at work. BUT I most certainly don't want to be in urgent care during the holidays either! 

It's Not the Flu! I have A PACEMAKER In My Stomach!

Tonight, (December 20, 2014), I found myself in urgent care battling the increasing pain that I have been fighting for a couple of days, lack of sleep, and vomiting--what would Gastroparesis be without the vomiting. When I arrived at Kaiser--yes, I have Kaiser and I actually like them...normally--I told the receptionist that I have Gastroparesis and a gastric neurostimulator and I don't feel good. When he asked what my symptoms were I said "pain...my whole belly and up my side. And vomiting. I haven't kept anything down." For cornsake, sunshine, I'm carrying a bright red barf bowl!

Then I got called back and did all my vitals (103/64 and 74! That's the best they've been in a while!) and then put into a room. I had my mom recline me on the exam table because it hurts so much to sit up--that was an adventure--and then the doctor came. After asking me, initially, what was going on, he addressed my mom from then on out. Sorry, but am I not the patient?! Am I not the one sick?! Later I told my mom, "maybe I looked too far gone or something and he felt he could only talk to you", but I don't think that was the case. He asked me, "so what do you want to do?"

"Well, SIR, make the PAIN and VOMITING go away!" Is what springs into my mind!

So he gave me a shot in my bum of morphine and Zofran. I continued to dry heave because, by that time, I had nothing more to upchuck. So he gave another shot of zofran. In the course of waiting to make sure I don't react to it, we hear a doctor and at least one nurse outside my door having a conversation::

Doctor:: I have two patients with abdominal pain. 

Nurse:: Well, it seems nobody wants to work right now. 

😳😳😳😡😡😡😳😳😳😡😡😡

I replied, rather loudly--though I doubt they heard me:: I'm sorry the fact that we are sick is bothering you!

😡😤😡😤😡😤😡😤😡😤😡😤

No person in their right mind asks to be sick. No person in their EVERLOVING mind asks to have a chronic illness. We are not there, particularly someone with a chronic illness such as myself, because we want to see their faces, disrupt their day, etc. I realize that nursing and being a physician is a job like any other, but you are dealing with SICK people! We don't need to hear bullpucky like that!

                             •

Shortly after that my nurse came in and announced I was leaving and I was packaged up into a wheelchair and sent home. The ENTIRE ride I felt SO nauseous and in pain. I managed to eat a fruit strawberry Popsicle when we got home just so I had SOMETHING in my stomach. My mom figures that if I'm no better or worse tomorrow, we'll find our way back over there. 

Tonight, I think I encountered a nurse and a doctor who neither knew what Gastroparesis not a gastric neurostimulator was. And because of that, I was lumped into the general population when it comes to abdominal pain and vomiting. It wasn't fair, though it's hardly the first time nor the last, that I've experienced it.

Education, people. I'm not asking for experts in urgent care or the ER, but a basic running knowledge and some respect would be nice. 

It's 1AM...

It's 1AM, what are you doing? Probably sleeping, lucky you. I've been awake for hours in intense pain in my abdomen, something I've been feeling increasingly for the last couple of days. And then, at the stroke of midnight--what is it with that magical hour--I started throwing up. Fabulous. I only had some peanut butter for dinner at 6pm and here it is, 6 hours later, and I'm urping it up like Linda Blair. Superb. 

I broke down and woke my mom up because I didn't know what to do. I'm in pain-- I had actually taken a Tylenol with codeine around 9pm--and then I had gone and ralphed, so I felt like I was in a conundrum:: can I take another? It hasn't been past the prescribed 4-6 hours though. I'm hurting bad, but the first one didn't even really help. So I wake her up and promptly have to go upchuck again. Splendid. She looks for a heating pad and can't find it and opts for one of those lavender-migraine-neck-wrap deals. When she put it on my stomach I burst into tears. Outstanding. I'm on a role tonight...eeerr...this morning. 

I've had a cold for almost two weeks now and I wonder if I've coughed, sneezed, or blown something out of place. Or maybe I've just irritated something. All I know is that it hurts to sit up, breathe, laugh, cough, or walk. Colds suck...Gastroparesis sucks even worse. 

A Nation Divided Over A Decision

There has been much talk, discussion, opinion, and controversy in regards to Brittany Maynard and her decision to end her life with Oregon's Death With Dignity Law because she had a terminal brain tumor. I do not know what it's like to have cancer, let alone a brain tumor, so I cannot speak or even fathom what it's like to be in that position. I can, however, speak on having a chronic illness that takes away your life, your dignity (at times), your dreams, and so much more. Gastroparesis leaves so many uncertainties in life...will this "meal" stay down?...will I even be able to eat today?...Is this the day I vomit so much I end up in the hospital?...Will they ever find a cure?...A treatment?...Is my gastric Neurostimulator going to work?...When will this/Is this going to kill me?

My understanding of Brittany Maynard's decision is that she wanted to choose when she died and she wanted it to be with dignity. While I can empathize with this sentiment, one truly needs to stop and think about what the Lord has mapped out for us. "Man's days are determined; You (God) have decreed the number of his months and have set limits he cannot exceed." (Job 14:5) God has the number of our days predetermined and by deciding that we want to end it before that predetermined time is to mess with His plan for us. Can we not see that a change, a miracle, a blessing could happen in the time between when someone decides to end their own life and when He has already decided to take someone? 

I recently watched an interview with a British actor who was in the Harry Potter movies and he talked about how he was supposed to have died 18 years ago from leukemia. Did you catch that? SUPPOSED to have died! If he had partken in something like the Death With Dignity Law or something along those lines, we would have missed out on all of the great works he's done in the last 18 years! Not to mention the 18 years he's gotten to spend with his family! 

Gastroparesis is not Cancer and I'm not going to pretend that it is. Gastroparesis is, however, unpredictable--one day you're fine and happy, the next you're sick and in bed; undignified--I  can hash and rehash how I've vomited on the side of the road, in allies, in buckets, and various public restrooms of ALL kinds; life altering--I can no longer eat most vegetables, fruits, go out late with friends because I am too tired;  and often terminal. There are very few treatments and no cure. Most of what is offered to someone with Gastroparesis is to manage symptoms or a "humane device". There is no propriety when it comes to Gastroparesis. I do not know what the future holds for me...malnutrition...dehydration...starvation...I don't know, but I'm sure it's not going to be pleasant. But I'm leaving it up to God. He holds my future. There is time for a miracle. There is time for me to bless those around me. There is time for me to make a difference. 

I'm not judging Brittany Maynard. We live in a free county to do as we please. I am not besmirching her name or trying to cause her family grief, I pray they find peace. I just pray that people who are fighting a similar battle as Brittany or myself will continue to fight. Nobody wants Cancer at 9...29...69. Cancer stinks! So does Gastroparesis! So fight on GPsisters! Fight on!

I Don't Discuss It, But It's There ::Wince Cringe::

It's a very common misconception that there isn't any pain with Gastroparesis, it's a lie, there is. I've never been in a fight a day in my life, but I'd imagine that it's much like being punched repeatedly in the stomach and then having massive heartburn afterward...something along those lines. There's an almost constant pain in my stomach--too bad it's not from sit ups and I could say I had a massive six pack--and now I also have the pleasure of having acid reflux on top of it. I'm not 80 years old, I shouldn't be having these problems, but such is life. 

Since having Alfred, my Gastric Neurostimulator, implanted a new pain has been introduced into my life. There is an almost constant ache that nags me, sometimes MORE than nags me. Advil, Tylenol, and their cohorts do nothing for it. If I take the heavy duty stuff, I cannot work, but it also slows down stomach motility, something that is already a MAJOR problem for me, so why even bother. Gastroparesis is a gigantic puzzle and a bunch of decisions that have to be made and it often results in you saying "why even bother?!" 

I don't even mention my pain and do the best that I can to not show my pain because I don't want to worry those around me. Not seeing me eat or lacking energy is worrying enough for them, so why add one more thing? Alfred is doing his job, I'm having more good days and less bad days. I just want pain to stop, food to start, and exercise to happen like a normal person. But, then again, I'm not a normal person. 

The Impact of Social Media

Social media definitely has it's perks--it has its drawbacks too, but for the purpose of this blog, we'll keep it positive. Facebook, Instagram, Blogger, Tumblr, Vine, and other websites allow you to connect with others who are experiencing many of the same things that you are. 

On Facebook you can follow pages or people that pertain to your interests, causes, diseases, etc and learn more about them; meet like-minded people, join in discussions, add your two cents, or have a mini-complain fest. 

On Instagram you get to post pictures chronicling your daily life or inspirational quotes complete with hashtags galore. You can follow people or pages that interest you, whether it be hobbies, illnesses, causes, bands, etc. Think a pictorial blog in mini form. 

With a website like Blogger (or Wordpress) a person--like myself--is able to post their thoughts, experiences, and such on a subject in a website form that anyone can find if they search for it. Making a blog, generally, allows a person to put out information on a subject to create awareness. That is my goal here at Diary of A Gastroparesis Warrior. I want to create awareness for, not only Gastroparesis, but chronic illnesses that I love with in general. 

Personally, I find a lot of comradie through social media that I may not necessarily experience in my day-to-day life. Who do I know in my personal life that has Gastroparesis? Nobody, really. I have met and been befriended by several people who are experiencing the same illness(es) as myself. We can share stories, experiences, and struggles with one another. We can also encourage one another during hard times, cheer during the good times, and laugh during the funny times because we understand what it truly feels like. I know that I can ask questions regarding my gastric neurostimulator--Alfred--and people will share their experience with me and I will do the same. It's nice knowing that I have people that I can go to who have sailed in the same boat. Without social media, I don't think I'd have that. 

Does that mean I won't share or talk to someone who doesn't have Gastroparesis? Absolutely not! I'll talk to anyone who asks me questions! I am an open book to anyone that asks, but YOU have to be the one to ask. 

If you're looking for pages to follow on Facebook, I suggest G-PACT. They post inspirational quotes and pictures from time-to-time, but the majority of their posts are informative and beneficiary blog-style posts. On Instagram I suggest the accounts fightforcat, counting_spoons, ju_spoonie, inspirationalstories_, and searching the hashtags Gastroparesis, chronicillness, gpsucks, and butyoudontlooksick. You'll discover many different stories, many different struggles, many different inspirations, and experience the comraderie that goes on. 

Social media has its place. You can learn so much from those around you who are going through similar experiences as yourself. Reach out to those around you, bond, learn, and help educate as many as you can. 

Gettin'...Physical...Physical!

It's no secret that I'm no Jane Fonda or, to bring it into more current terms, The Rock, John Cena, Vin Diesel...you get the picture...but I do the best that I can to exercise every day—or frequently, whichever happens first. Naturally, I don't do spinning classes, WOD (not that I even KNOW what that is!), CrossFit, or anything exceedingly vigorous; however, I do jump on my elliptical machine anywhere from 15-20 minutes when I feel like I can. Most of the time, though, I do stuff off of Pinterest. I've turned my iPhone into a veritable smorgasbord of exercises! Mostly they consist of stability ball routines, light weight training, yoga, and Pilates.

Unlike a traditional exerciser, I don't plow right through a routine for 45 minutes or an hour or MORE, I pick my way, taking breaks when I need to—as opposed to passing out—for a stitched together routine that adds up to...sometimes 30 minutes...sometimes 20 minutes...and, some days, only 15 minutes. I try and make sure that I do at least one exercise per region of the body if I am just having A DAY. If I am feeling wild and crazy, then I do a lot more per region. In general, squat variations, sit-up variations, and various arm curls are the norm—and then I wonder why I cannot walk or lift anything the next day!

I love trying new things and I love using my stability ball—mostly because it makes me feel like I'm a professional body builder or something—but I discovered recently that lying on my belly across the ball with my hands on the floor in front of me to raise my legs up behind me (I believe it's called a Reverse Hip Raise and it works your tooshie) isn't Alfred friendly. I seriously thought I had ripped open some stitches! So, with some adjustments, I was able to do the exercise—it's one of my favorites.

No matter what your circumstance, try and get up and move, even if it's just a little bit. I started out with Pilates—it's pretty gentle, so I suggest that. Do what YOU can and don't try and keep up with anyone else because the most important thing is that you're up and moving!

Alfred and The Flux Capacitor

Yesterday was Alfred's very first adjustment since being implanted. My fabulous surgeon brought with him a senior intern and his charge nurse into the room—with my mom being there, it was a roomful. First he wanted to know how I was feeling—hhmm..loaded question at the moment. I generally tell people that I feel about 70% better than I did before surgery. I still throw up food. I still feel nauseous. I still get bloated. But it is not AS bad as it was before having Alfred. He then asked what I've been eating—hhmm...loaded question again. I try to eat! I get points for that, right?! I explained that my diet primarily consists of protein shakes (JuicePlus) and baby food, to which he said “but do you chew food?!” Well of course I do, but not a whole lot. My mom explained that I eat a few ounces a food a night, but that's about all. Generally, I cook dinner for my family and I eat a child's-size portion—if even that. He seemed happy with that since I was maintaining weight.

Now the interesting part (I think)...

My surgeon laid back the exam table and had me lift up my shirt so that he could see my tummy and then he pulled out his little whizbang machine—think portable ATM machine with a cord attached to a half-dollar-sized gizmo. The little gizmo gets pressed against Alfred by the nurse and then my surgeon and the intern start discussing numbers that are WAY over my head—all dealing with the workings of Alfred—and that's it. I thought I would feel a buzz, a snap, a zip, or zap during this little adjustment, but I felt nothing! My stomach/side are a little tender—probably from the pressing of the gizmo onto Alfred—but other than that, it was a breeze. 

The surgeon and his whizbang tool doing Alfred's adjustment

At the end of the appointment I had to fill out a questionnaire rating the frequency and severity of my nausea, vomiting, bloating, early satiety, epiglottal burning, and epiglottal pain. The last two were head scratchers for me as to what they meant, but I figured it out (think heartburn) and was able to fill out the questionnaire. The only one that really got a bad rating was the early satiety because Alfred really has no bearing on that—I blink in the general direction of food and I'm full. Once I turned in that bad boy, I was done! Alfred's next adjustment is in two months! It's such an interesting process...very interesting!

Batman Isn't the Only One Who Has His Alfred—I've Got One Too!

It's been 46 days since I've had Alfred put in—such an important anniversary—and life had been interesting, better, the same, and different, all wrapped up into one. I never went into the gastric neurostimulator surgery thinking that my life would be back to normal. I never went into it thinking that I would get better—there is no such thing with Gastroparesis. I went into it hoping for relief and you know what? I've gotten some. By no stretch of the imagination is it perfect. There have been a couple of days within those 46 where I just wanted to curl up and die...but did you notice that I only said “a couple”? It used to be pretty much every day.

I still find myself not all that interested in food—which I knew Alfred wouldn't help—and struggling to eat the food in front of me. The game of eenie meenie miney mo between water and food is fought every day because, if I drink too much, then I won't eat. If I eat, then I won't drink...so I have to try and find that balance. Here's a hint:: I haven't found it quite yet. I have mastered the art of the hip-hitch when I sit—no, I'm not tooting—otherwise, Alfred pokes me in the hip or the ribs. My surgeon said that there's only a small space between my ribs and hip so they found the best place possible and that's where they put the “pocket” that Alfred sits in. I know that it's just going to take time to get used to, so pardon the way I'm sitting.

Slowly I've made connections to when I've had my bad days, like after playing tennis—yes, tennis—at work with my student, playing football with him—yes, football—and holding little babies and passing them back and forth and to and fro. I'm discovering that I haven't quite recovered enough to do that...just yet. I'm wanting Alfred to launch me into the Olympics or something when I need to stop and wait for him to just get me through lunch! Small steps.

Maybe that should be my motto: Small steps...but I think I'll go with.................... ba na na na na BATMAN!

Alfred's First Day of High School—They Grow Up So Fast!!

Today was my first day back to work after having Alfred—my Gastric Neurostimulator—implanted. I've been off for a month recovering at home and getting used to having a metal device living in my stomach, no biggie. As I'm typing this, it's only 50 minutes into the first period of the day and I'm already exhausted! I've had to get on the cases of several high school children about their attitudes, remind them that they've had classes with me before and I will give them what-for if their attitudes don't change (since there was a substitute), try to figure out my one-on-one's forgotten password (I wasn't successful), and already explained once what a Gastric Neurostimulator is—lets see how many times that happens! (The end total was 3, not bad!) Nothing has changed...it's great to be back in high school!

There was a time when I used to INSIST upon taking the stairs to go make copies—have to work on those buns and thighs, you know—but that was SO not going to happen today! Me and Mr. Elevator, we were best friends and I think we will be for a few weeks. And you know what? That's alright! Today was only my first day! By 2^nd period I had made about 4 trips upstairs to make copies for a teacher, so Mr. Elevator and I were getting very friendly, but it was still pooping me out!

Honestly, the best part of my day, that made my heart very happy, was seeing the kids again. Having kids yell through the halls “MOM!” (some of them call me that) or “Ms. Christine!! You're back!” and then come and give me a hug. And having them tell me that they don't want me to leave them again and that they missed me, THAT warmed my heart. You know that you've made an impact on kids when their faces light up when they see you and HIGH SCHOOL kids run to greet you. You know that you've made an impact when HIGH SCHOOL kids say “you're not going to leave us again, are you?!”

By the time I got home—I think it was about 17 hours later...I lied, I work 6 ½ hours—Alfred was telling me that he had had enough and was ready to go to bed! You know that feeling when you run a marathon? Yeah, me either, just imagine with me...and you get that pain in your side from lack of oxygen...too much oxygen...your body saying “Hey you! Why in the world would you PAY money to RUN!?!?!” You know the feeling I'm talking about now! Anyhow, it's pretty much firmly planted itself upon my side and I am practicing my Lamaze breathing techniques for the remainder of the evening. But you know what? It's okay because it was only my first day. Things can only get better from here!!

Gastroparesis Diet—You Have Got to be Joking Me!!

[I am NOT an expert nor a doctor, so please consult with a professional in regards to your nutritional intake. This is merely my personal experience]

Don't let the title fool you, one of the most important and first steps of combating the symptoms of Gastroparesis is changing your diet. You're often guided toward the Gastroparesis Diet and encouraged to limit your intake of fatty and fibrous foods because a gastric system with motility issues cannot process these types of foods any longer. Bye bye fruits and veggies (for the most part) unless they have met the spinning fate of a blender. Goodbye creamy, cold goodness that is ice cream. Goodbye cookies...Wait, what?! Yes, no more milk and cookies. It's a very sad day! But here's the thing, with Gastroparesis, you kind of learn along the way, that things like fruits and vegetables, are really big no-nos. You find out along the way what is “safe” and what is “unsafe” and what is “safe” one day can become “unsafe” REALLY quick.

When I was handed the Gastroparesis Diet, I laughed in the doctor's face. Like, outright LAUGHED. The shear amount of food recommended that I eat at each meal was laughable to me and some of the items too! I told him that I wouldn't be able to do it, but that I would try, and I did, but it was a complete failure for me.

Here is an example of a Gastroparesis Diet Menu you may receive:

SampleMeal Plan for 6 Small Meals
Breakfast 
1 cup cream of wheat cereal
½ cup skim milk
½ cup grape juice
1 scrambled egg
Snack 
10 ounces of instant breakfast with skim milk
Lunch 
½ cup vegetable soup
½ turkey sandwich
½ cup applesauce
½ cup milk
1 tablespoon mayonnaise

Snack 
10 ounces banana shake made with l plain or vanilla yogurt, milk and sugar
Dinner
 2-3 ounces baked chicken or fish
½ cup mashed potatoes
1 teaspoon margarine
½ cup spinach
½ cup milk
½ cup fruit cocktail
Snack
 ½ cup pudding, custard or gelatin

Everyone is different, however, so please do try this and see what works for you. Personally, I just began systematically eliminating things from my diet, starting with the things suggested in the Gastroparesis Diet plan, like vegetables and fruits (BIG bummer for me). However, eating the amount of food in the above meal plan was absolutely out of the question for me. Drinking an Ensure or a Boost to the bottom of the can was a feat, so eating all of that food up there was preposterous to me and STILL is to this day! Even while I was in the hospital recovering from getting Alfred (my Gastric Neurostimulator) implanted, they were trying to feed me heaping piles of pasta and broccoli and a cup of fresh fruit—somebody was really on the ball that day! And then I was, once again, given the Gastroparesis Diet Menu (just in case I wasn't aware of it).

I eventually settled myself (the best I could, anyway) on a protein and supplemental plan called JuicePlus earlier this year. It helped my hair get healthier, which I'm really happy about, and my nails to grow a little stronger. Some people swear by Boost or Ensure or Atkins protein shakes to help fill in where they're lacking in actual food intake. My suggestion is, find one that you like the taste of, that has proper nutrients and that you can afford. I get the chocolate JuicePlus powder and was, originally, mixing it with chocolate almond milk. But, remember how I said a “safe” food can suddenly become “unsafe”? Well, I wouldn't say that my shake is “unsafe”, but my stomach has decided that having it be all milk was just too much, so now I do 50% water and 50% milk. Seems to be working alright, so far. If you're interested in learning more about JuicePlus or want to get hooked up with a representative, I can give you my lady's name. She's a doll!

My parting advice would be: Find out works for you. Gastroparesis Diet, FODMAP, JuicePlus, Boost, Ensure, Atkins, mish-mosh of everything...whatever. The important thing is to stay nourished and hydrated—the best us GPers can!