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!

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!

Three Weeks With Alfred, My Best Buddy

It's been a little over 3 weeks since I've had Alfred, my Gastric Neurostimulator, my new Best Buddy implanted and I'm sure everyone wants to know how I'm feeling, what it feels like, am I the Bionic Women yet, those kinds of things. First of all, if you get me mad, I can now send you flying to the next block with one electrical shock! Just kidding...just kidding! I'm feeling pretty good, all things considered. I tease my mom, because I have trouble doing certain things that require anything heavy, by saying “it's because a doctor went [insert 1950s horror movie knife stabbing noise here] into my tummy!” Our freezer is a little tricky to open, so I have to have help opening that and I can't always bend over to pick things up for myself, but when you've been split down the middle, you don't really care about those things.

Before I had Alfred, I didn't know what to expect. I was thinking that every time he went off I was going to feel a little shock, a little pulse, a jolt, a little something. In all honesty, I rarely feel anything, but that's how it's supposed to be. I feel a little tickly sensation every now and again. And sometimes I get twitches that are kind of strange, but mostly Alfred's just hitching a ride and doing his job. One night, after that earthquake incident I told you about, I SWEAR I felt like I was getting shocked in my throat—but maybe it was just post-earthquake paranoia. Today, for about 5 minutes, I swear I even forgot I even had him. Part of me was proud of myself for having forgotten that I was living with this pacemaker, the other was sad that I had forgotten about my new Best Buddy. Strange though, huh?

Prior to having Alfred implanted, I would often throw up 5+ times a day, feel nauseous pretty much 24 hours a day, and feel quite bloated after eating anything. I hid it fairly well—when I wanted to—and would do my best to not allow even the worst of Gastroparesis flares interrupt my day (I know that not all GPers are that lucky). Since having Alfred—I got him on August 18, 2014—I have thrown up a total of 7 times. TOTAL! Going from that in one day to that in three weeks...I'll take it! There is a year of adjustments ahead of me, it's not perfect yet, and it may never be perfect, but it's IMPROVED.

I wish that, considering I have this AWESOME device implanted in me now, that I have miraculously turned into the Bionic Woman, Batman, or RoboCop; but, alas, I am still just plain, ol' mortal Christine. I hope that's suitable for everyone!

I see my surgeon today for my first follow-up with him post-surgery to see what he thinks of everything. Hopefully he's happy with my progress considering I've only been taking Advil PM for pain relief for the last week and a half and my incisions look good—no sign of infection. I'm curious as to what he'll think of the return of my chronic vertigo since surgery. I haven't had any trouble with it in quite a long time and then BAM, I wake up from surgery and hello vertigo. Plus, I wonder if he'll mention my post-surgical low blood pressure at all (88/45) and the fact that the highest it got in the hospital was 102/72—or there abouts.

I'm glad, thus far, that I've gone through with getting Alfred. Yes, there's an adjustment period and healing time that's not exactly sunshine, roses, and skittles, but you have to have rain to get the rainbow, right? A parting piece of advice: don't sneeze after this surgery, it hurts.

Sorry, folks, this is not me.

/

So I Throw Up My Food (But Not On Purpose!)-Maintaining A Little Perspective

For argument's sake, I'm going to call March 2015 my Gastroparesis Birthday, so it will be five years of living—I chose to say LIVING as opposed to SUFFERING, personal preference—with this uncomfortable disease. Let me be the first to tell you that it is VERY hard not to wallow in self-pity when it comes to Gastroparesis. You feel like you have the stomach flu 24/7, 365; you are hardly ever hungry and when you are hungry, you're limited on what you can eat; and then the worst part—DUM DUM DUUUUM—you end up vomiting up your food or water or nothing at all a good chunk of the time. There's this worry that lingers in the back of your mind all of the time “am I dehydrated?” or “I hope I've managed to eat enough so I'm not malnourished” all while you've got a smile plastered on your face and people telling you that you “look great!” or that you “look fabulous!” or that “there's no way that you can be sick!” Well, I hate to break it to you, sister, not every illness comes with visible implications of it's damage, but I digress.

There is this emotional toll that is waged upon a person with Gastroparesis (or anyone with an invisible illness, for that matter) when there is a flare up, when they know they have engagements/plans to keep with friends but are too tired or too sick to keep them. Will the friends understand that I am just ABSOLUTELY exhausted today and cannot get out of bed? Will they understand the reasoning behind my making 6, 7, 8 trips back and forth to the bathroom to throw up? Maybe, maybe not. Let me tell you, depending on the person, it is VERY hard to explain to people exactly what Gastroparesis is, particularly the vomiting part. That, in my opinion, is the part that people understand the least and fear the most. “Certainly she's MAKING herself throw up” they'll say. Or the always helpful “have you tried________”. Yes, yes I have, but thank you. People grasp certain diseases. They may not fully understand them, but they grasp them because they are talked about, they are more prevalent—which is VERY sad, don't get me wrong—but when it's something new and it's something different...WHOA, pump the breaks!

And then I thought to myself one day “Christine, you just throw up your food. It's not cancer, it's not affecting your brain in any way, lets gain a little perspective here.” There are SO many people out there fighting things that are SO much worse than me; granted, there are people with the very same disease that I have that have a much harder time than I do and that's not lost on me, but in my world, I have to have perspective in order to survive. In your world and what you are experiencing, you have to have perspective and understanding in order to survive. I know that, for me, things could be significantly worse. Yes, I have “significant gastroparesis”, migraines, and chronic vertigo but I am alive and I can still walk, talk, work, and do (most) of the things that I want to do. Sometimes, because I don't take in all of the nutrients that I need (due to the aforementioned reasons) I get tired really quick so that cuts into things I want to do, but hopefully with the help of my Best Buddy Alfred (my Gastric Neurostimulator) things will start looking up!

God has shown me a lot as a result of this disease. He's shown me just how faithful He is to someone as small as me. He's shown me true friends in the midst of a strange and perplexing illness. He's shown me just how strong I really am, but more than that, He's shown me how strong HE is. It's perspective, everyone. Look outside of yourself, outside of your own suffering every once and a while, and gain a little perspective.

A Little Humor With A Side of Chronic Illness

Lets face it, when you have a chronic illness, you have to have a sense of humor about it...you just have to. If you can't laugh about the fact that you throw up your food or that your belly hurts twenty-four-seven, then you're going to go absolutely bonkers. That has been one of my biggest coping mechanisms and it has helped me to keep a smile plastered on my face for the last 4 ½ years. I have given the ever present pain in the right side of my belly the extremely appropriate name of “Medulla Oblongata South” because why wouldn't you?! I call my belly Gertrude because it's cantankerous and “Gertrude” just sounds like a cantankerous old lady name to me (sorry to anyone named Gertrude out there, this is not a commentary on you personally). The fact that my migraines start in the same spot and pretty much stay in the same spot is not lost on me—I may be a blond, but I am not stupid, people—so I have begun referring to the fact that I have a migraine as my “genius growing”. Maybe putting a name and personifying what I am experiencing just makes things easier, but it also makes me, and my family, giggle in the midst of a not-so-pleasant illness.

Here is a humorous story for you:

I live in the sunny, albeit hot state of California, in the southern portion of it about 90 miles north of the border. Every now and again we are blessed (I mean that with all of the sarcasm I can muster up within me) with these lovely things called earthquakes. Now earthquakes just kind of happen, like an unwanted sneeze or a sudden power outage or a fainting spell, you get the idea. About three days ago I was dying to lay on my stomach...DYING! My mom (a nurse) didn't think there would be any harm in it, so I, VERY gently, turned onto my stomach as I was watching TV. No sooner did I get settled then BAM! BAM! R A A T T L E ! My mom jumps up and says “Earthquake! Lets go!” and I'm looking at her, completely terrified, stuck on the couch! I can't move! I've put myself onto my stomach, but I can't get myself onto my feet to move to a safe place because of the earthquake. “I'm stuck, Mom! You have to help me!” I squealed. She helped me up and we shuffle under the nearby door jam (which now, after umpteen years, they tell us you're not supposed to do. Oh well, old habits die hard). When it was over, which was within seconds, I said “I'm sorry, God, I will never lay on my stomach again! I promise!”

My reaction to being stuck on the couch during the earthquake!

They say that “laughter is the best medicine” and I would have to say that that is a pretty accurate statement. There is a recipe that makes up “the best medicine” and it's different for everyone. But I encourage everyone to laugh and to smile and to live through their tough times because, even though you might be feeling lousy, you can still go out there and have a good time!

My New Best Buddy--Alfred

In my last post, which was my first post, I mentioned that I have a new best buddy and that his name is Alfred. He's just a tiny little guy, only about 2 inches big and he's made out of surgical steel. You see, Alfred is my new Gastric Neurostimulator. On August 18, 2014 I had him surgically implanted into my stomach to helpfully elevate some of my Gastroparesis symptoms. Now, I know what you're thinking: "Christine, on your first post you said that you were doing good and you were back to work! Pump the brakes! Now you have a what?!" Let me explain myself...

When I went back to work in 2011, I was doing pretty good. I was managing my symptoms pretty well and maintaining weight. I was enjoying being back to work with my kiddos, being able to exercise regularly (no marathon running, just palates and things I'd find on Pinterest), and eating my fair share of food. As time went on, I was discovering that I was having to eliminate foods from my diet because they seemed to be too heavy. First it was the granola from my granola, yogurt, and blueberries in the morning. Then it was the blueberries. Next it was the yogurt. In the afternoons I was eventually finding myself cutting out the lunch meat I was eating (I don't eat bread). 

By late last year I was not keeping much of anything down and not hungry anyhow. I saw my neurologist and the first words out of his mouth were "you've lost too much weight!" I got in to see the nurse practitioner in the gastroenterology department (GI) and she put me on a medication that she said was "really, the last thing, medicine wise, we can give you". It only made me sicker. I FINALLY got in to see my doctor and we discussed the fact that I have failed medications and the botox (remember, it's not all it's cracked up to be, ladies!), so he figured that I would be a good candidate for the pacemaker. All that stood in my way was having another, but longer version, of the gastric emptying test.

I got scheduled for the gastric emptying test (you eat a sandwich with radioactive dye in it and then have x-rays for either 2 or 4 hours [in increments]) and had it within a week. Let me tell you, that sandwich felt like lead in my belly! The results came back that I have "significant gastroparesis". BAM! Two weeks later I'm in seeing the surgeon after keeping a "diary" of my symptoms for him. He said "on paper, you're a perfect candidate for it, but I don't want you to rush into this. It's a big decision to make because you have to live with this thing for the rest of your life!" (See, I couldn't just call Alfred a "thing" or "it" or "the device" for the rest of my life!!) I saw him on a Friday and I called him on Wednesday saying "I'm in!". Honestly, from the moment my GI doctor said that I might be a candidate, I started researching the Gastric Neurostimulator--half the battle is in spelling the name right!! (That was humor, people!) I knew there was a 50% chance that my symptoms might not be relieved, that the leads might poke through to places that they aren't supposed to go, that the pack might malfunction and stop working or shock too much. Then there's just the general surgical risks, so I knew what I was getting into, but to even TRY and be relieved of the 24/7 feeling of being nausea...I was willing to give it a try!

On August 18, 2014 I went in and Alfred was put in! I spent 3 days in the hospital with a roommate who had the same exact procedure done! I deal with low blood pressure issues--I entertained everyone with a BP of 88/45 when I arrived in the room--so I wasn't allowed out of bed the first day, yay me! I have to say, the pain...is pain...but it's manageable. I DO NOT recommend coughing or sneezing or laughing. I kept my entertainment to the back of my eyelids or the Cooking Channel (ironic, right?). I see my surgeon on September 10th for a check-up to see how things are looking, but so far, so good! Am I 100%? Nope...but there is a year of adjustments ahead of me!

Here's what Alfred looks like!

This is what I looked like BEFORE Gastroparesis entered my life.

Here I am interpreting for the Deaf the night before Alfred was implanted!