Faith and Gastroparesis

I am, unabashedly, a Christian. My faith plays a large part in who I am as person and how I conduct myself on a day-to-day basis. Therefore, I think it makes sense that my faith plays a large part in my life with Gastroparesis as well. Every day I have to trust that God will get me through the day...through the flare...through the migraine...through the vertigo episode...you get the idea. Every day I have to KNOW that God has a reason for me living with Gastroparesis. I don't have to UNDERSTAND, I just have to have faith.

“In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various trials, that the proof of your faith, being more precious than gold which perishes, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ.”-1 Peter 1:6-7. My trial, my perseverance through this time of my life, could be the very thing that someone needs to know that there is a God. The Lord gives me strength to make it through every day. I thank Him for my family and friends. For the job that I have. For the church that I attend and serve at. He sustains me. He is there. Through the happy...through the sad...through the mundane...through the painful...through everything.

During my journey with Gastroparesis, I don't seek to have praise for myself because I am human that makes mistakes, that fails, that will crumble under pressure. God, however, is faithful and deserving of all the praise because it is through Him that I am able to smile through it all. It is because of Him that I am able to laugh through the life that is Gastroparesis.

If you struggle with faith in God, please reach out to me. If you struggle with the idea that there is joy in pain, please know that there is. I'd like to suggest the book “Hope for Hurting Hearts” by Greg Laurie, as well as checking out the trailer for the movie by the same name.

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.” -James 1:2-4, 12

Hope for Hurting Hearts Trailer

The Spoon Theory....No The Knife Differential Is Not Coming Later

[Please click on the highlighted "Spoon Theory" and read it in it's entirety to completely understand it]

Recently I was introduced to The Spoon Theory. It's a very interesting Theory and those who can relate to it call themselves Spoonies. Personally, I can relate to it in that, I have to think "how tired will [insert activity here] make me?" "If I do [insert activity here] will I be able to [insert a different activity here] later?" and so on and so forth. That's something, I think, people who do not have an illness of any kind, stop and think about. Showers, cooking, eating, getting up and down out of chairs is exhausting--but it's a fact of life. It's something that's shaped and molded me into the person that I am today and, while I am tired, in a way, I think I am a stronger person for it.

I grew up an athlete and dancer. I started dancing when I was two, doing tap and ballet at the YMCA--so use your imagination about how good I was. And then I moved over to Freddie Finn Dance Studio. When I was 8 years old I started playing softball and soccer, two sports I played well into my teenage years. Softball, though, was something I excelled at; however, dancing is what I miss. Some time in middle school I did BMX bicycle racing...for about five minutes. I've done it all. So, I like to do things. I like to hike, I like to 4x4, I like to swim, but with Gastroparesis...mmm...I have to be calculating. I've done Zumba as a Gastroparesis patient--shook my groove-thing like every other lady in that dance room, but then it became too much...a spoon, you see. I used to go walking around the block--a COUNTRY bloc--in my neighborhood, but then it became too much...a spoon, you see.

I'm stubborn though, there are just some things that I will not give up even though they tire me out--interpreting for the Deaf, going to the park with friends and family, camping, hiking, exploring, working, playing. There are some parts of me that I am just not willing to give up. It'll cost me sleep. It'll cost me what little food I eat. It'll mean some physical pain. But it meant that I got to do fun stuff and I life doing fun stuff...I'm actually quite insane--at least in my own mind!

There really are people out there who have to be more frugal about their activities and I get that--I'm a lucky one. Please continue to have fun with me! I still like to laugh. I still like to goof off. I'm still Christine who will poke fun at you if you do something silly, trust me, I just get a little tired every once and a while. 

 

Gastroparesis Waits For No Man.

You know that saying "time waits for no man"?--I'm sure that it was someone old that came up with it. Well, Gastroparesis waits for no woman, job, plan, friend...nothing. Gastroparesis is on its own timeline, it's own schedule. It does not care if you just brushed your teeth or just put your make-up on. It does not care if you were only able to "eat" a couple of ounces of your breakfast. It does not care if you are on your way to work or at work. Like I said, Gastroparesis waits for no woman. 

So, what do you do?

Panic?

Cry?

Throw a tantrum?

All of those are viable, plausible options. But let's be adults about this. 

We can't give up.

We can't give in.

So what do we do?!?

I try my best to march on with my routine--with a little case of bloodshot eyes. On the way to work, I treat myself to a nice high calorie Starbucks drink--nice ruse huh?--and try to march on through my day. What happens if the flare continues at work? Inform those I work with what's going on. It's good for people to be informed--slightly awkward for some, but they'll get over it--and good in case an emergency occurs, which hasn't happened yet. 

I also sip on water as much as possible to stay hydrated. Sometimes it helps, sometimes it hinders, but working on the theory that I'm hoping SOMETHING is staying in and helping me, I sip on water....S-L-O-W-L-Y. If I find that it's only making it worse, then I stop. 

If all else fails...Zofran. I always carry Zofran with me so that I can toss one back if need be. Personally, I hold off taking medicines until I just can't take it anymore, but everyone's different. Zofran usually does the trick, but not always. I've noticed since getting Alfred, it seems to work better. Prior to that, I preferred Phenergan; however, that stuff makes me sleepy. 

As always I use humor. 

Laughter. 

Smiles.

Busy myself. 

I'm sure you're thinking "Christine, I feel like roadkill, run over by a Mack truck, stamped on by a horse!" I know! I can relate! 

Here's another saying for you, "kill them with kindness", it applies, no? If I can smile or laugh my way through whatever I'm experiencing at the time--and I realize that staring down the barrel of the toilet bowl is no laughing matter, but I'm a firm believer in finding humor in everything--then I am not allowing my situation, my circumstance to win. If I cry, panic, or throw a tantrum I won't gain anything...except an ulcer and my poor tummy can't handle that!

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!

A Dash of Vertigo With A Pinch of Migraine

Imagine sitting at work in an elementary school grading work and you can't make out the writing because it's blurry, that was me in 2010. Right before (like a week) my Gastroparesis started came chronic vertigo and chronic migraines—go big or go home, baby! I ended up in urgent care because I couldn't see straight and couldn't stand up. Naturally, what do the doctors do? Had me lay down, sit up, turn my head, everything you DON'T want to do when you have vertigo. It was a nightmare! I was sent home with scapolamine patches—I think they thought I wanted to go on a cruise—and they called it a night. The patches didn't work, so within days I was in my doctor's office looking for relief. What I got was Dramamine—more seasick remedies. That didn't work either. The interesting thing about my vertigo was that I felt like I was on a conveyor belt. The ceiling and the floor looked like they were moving like something you would see in a factory...no spinning...no whirling...it was Conveyor Belt City for me. That totally threw the doctors for a loop. Not to mention I didn't have ringing in the ears. If I had these symptoms they would have known that it was Meniere's Disease. Another possibility was Benign Paroxysmal Positional Vertigo (BPPV), however, I don't have crackling in my ears, so that ruled it out.

Since I was a conundrum wrapped in an enigma tied in a zebra striped bow, I was sent off to physical therapy. While this was VERY interesting therapy, by this time, I was suffering from REALLY bad vitamin B deficiency from the not-yet diagnosed Gastroparesis, so I was walking with a cane AND walking with vertigo on a floor that looked like a conveyor belt. Therapy was not fun, it was not easy, and it got me nowhere. I saw no improvement from it, so it was terminated. Eventually I was sent off to LA to see if I qualified for a trial (or something) for a little thing called Mal de DebarkmentSyndrome—say THAT ten times fast. However, I didn't feel as though I was on a boat, it wasn't a swaying motion, it was a CONVEYOR BELT, very different, so I didn't qualify and back home I went to just deal with it.

With the vertigo kind of a head-scratcher, the doctors moved on to the migraines. MRIs were clear—YAY--showing that it wasn't a tumor and it wasn't MS (since I was walking strange from the Vitamin B deficiency they thought it was a possibility). The Topomax seemed to be working, but my neurologist just was so flummoxed by what I was experiencing, so it was off to UCLA to see a migraine specialist.

What. A. Waste. Of. Time.

What I gleaned from the specialist was that there are no such things as sinus headaches—I beg to differ, my face has wanted to fall off from the pressure of the snot in my sinus', but whatever, Sir. I have “a migraine syndrome”--so specific in his diagnosis he was! He had me bump up the amount of Topomax I was taking in a day. And I got to pay $250 for that! But I'm not bitter, no I'm not! It took a couple of weeks, but the increased Topomax seemed to actually have an affect on my vertigo as well as my migraines—or maybe it was just my determination to get out there and beat all of this stuff, who knows. I went from barely being able to make it to the end of my driveway to going up my street (it's less than ¼ mile long) to going around the corner to going around the country block. I saw the doctor at UCLA on Valentine's Day 2011 and I went back to work in April 2011—how 'bout them apples!

In the years since returning to work I have had bouts of vertigo that have lasted several days to several weeks for no explainable reason. I just do my best to work through it and make sure that people around me know that they may have to catch me if I do an unexplained pirouette walking down the hall. My migraines, like the vertigo, are just as transient and just as strange. Unlike most migraine sufferers, I do not have light, sound, or smell sensitivity, nor do I have auras; so you wouldn't really ever know that I'm having a migraine unless I told you. I call myself a Functional Migrainer—remember that I coined that phrase when it goes viral. Only when the pain gets too intense do I have to give up and go lie down. About two years ago I was prescribed Imitrex to take for acute migraine attacks and that seems to help, but Excedrin Migraine isn't too shabby either.

Thankfully I don't encounter migraines nor vertigo very often, but when I do, I have my handy-dandy Imitrex or Excedrin Migraine with me!

Friendship and Gastroparesis...Is It Awkward For You?

I'm sure having someone in your life that has Gastroparesis is not easy to see. Trust me, being the person with Gastroparesis is not easy to live with! I'm sure that it's awkward not knowing whether the person is capable or up to doing certain activities, whether saying certain jokes around them will be offensive, witnessing them getting ill and not knowing what to do is scary...I get it, trust me! Maybe it's awkward for some people to be around someone who spontaneously spews their food, has a metal appliance surgically implanted in their tummy that they've named Alfred, can't eat anything much more than a kindergartner would eat—hey, it makes me a cheap date!—or constantly feels seasick, I get it, I really do.

What I'm going to tell you is this:: It's okay.

It's alright to have questions.

It's alright to be nervous or apprehensive.

It's alright to not know what to do.

All you have to do is ask! Ask what it's like to live with Gastroparesis and how I manage things. Ask what you can do for me should you be with me and I'm having a flare—bring me water. Ask what I feel like doing—hiking, bowling, walks, PICTURES!!! What I feel like eating—CHOCOLATE!! Text me or call me and just ask me how I'm doing. You would be surprised how meaningful a simple text can be to someone, even if it's in the middle of the night and I don't get it until morning. It shows that you're thinking of me.

Let me know now, while I'm in a “simple” flare, if it's too much for you and you're going to hit the road before things get worse. I don't want to count on you and then have my heart broken because you didn't show up when I thought you would—it's happened to me and it's happened to others, it stinks. Let me know if I'm using too much medical terminology and just need to use simple terms or just not talk about it at all. Or, very plainly, just tell me what makes you feel awkward—I'd like to think of myself as Wonder Woman, but I can't read your mind...I'll work on it!

At the end of the day, just love me like you would love someone who doesn't have Gastroparesis. Have understanding and compassion that, sometimes, it's just not going to happen for me. Sometimes, you, me, the couch, and the TV might have to make a day of it. Hug me, tight sometimes, like you would any other friend that you have.

[Thank you to Undiagnosable_ on Instagram for her contribution to suggestions on ways to be a friend with a person with Gastroparesis]

Metamorphosis...It's an Inevitable Change

Life, in general, lends itself to different kinds of experiences. Some of them are amazing and some of them...not so much. In living with Gastroparesis for nearly 6 years I have had some absolutely horrible experiences—Countless trips to urgent care, hospital stays, IV sticks, blood draws, 24/7 365 days nausea, copious amounts of medications, side effects of said medications, pill tests (swallowing pills that BLINK), MRIs, CAT Scans, physical therapy for vertigo (interesting, but not fun), lost friends, missed opportunities, missed plans, worried parents. Oh, and the vomiting, can't forget that. These are experiences that I wouldn't wish on my worst enemy—if I had one.

But I have also had some of the most AMAZING opportunities along the way and they FAR outweigh the unpleasant ones. I've gotten to interpret for the Deaf at Angel's Stadium twice, go to a taping of The Ellen DeGeneres Show, go camping in the Big Bear Mountains twice, go 4x4ing in Big Bear and Death Valley, go hiking several times, do science experiments, go cosmic bowling, make friends, have parties, and SO much more. These are experiences that I will NEVER forget and, though I may not have been feeling top notch during any one of those given activities, they are mine to cherish because I didn't allow my disease to take it away from me.

The question still lingers though: has Gastroparesis entering my life changed me? The answer is simple...No...Yes. Deep down inside, I am the same sarcastic, goofy, happy, silly—I'm flattering myself here—person that I have always been. If you set yourself up to have something sarcastic said to you, rest assured, I will not hesitate to fling a sarcastic remark right at you—and I don't even have to know you! I have always been a good listener, willing to take the time to stop whatever I'm doing and help a friend in their time of need, to lend advice if it's wanted.

But, by the same token, Gastroparesis has changed me in that I probably talk about barf a little bit more than a proper lady should and how bloated I am after eating so very little and how that is ENTIRELY too much food on my plate (I can barely manage a few crackers anymore). Mentally, I think about where all of the bathrooms are between Point A and Point B, but rest assured, I am not above throwing up in an alley or on the side of the street! I have to daily decide the simplest of things...should I make my protein shake or just drink a ready-made one? Should I carry medication with me today or will I be fine? Is that enough water or do I want to deal with carrying more? I also didn't have to stop and think “should I take a Zofran (an anti-nausea/anti-emetic medication) before I eat or will I be alright this meal?”These are things that, prior to 2010, I never gave a second thought to!

Gastroparesis has changed me. But I am still the same.

Turns Out, I'm Not Such A Great Ambassador...Better Luck Next Year!

I'm sure that we're quite aware that there's a Day for pretty much everything under the sun. Like, did you know September 14^th is National Cream Filled Doughnut Day? Or that February 24^th is National Tortilla Chip Day? There's a Deaf Awareness Week from September 21^st-27^th (in Riverside, Ca anyway). We KNOW that October is Breast Cancer Awareness Month. We KNOW that the last Thursday in November is Thanksgiving and we KNOW that the 25^th of December is Christmas. But did you know that August is Gastroparesis Awareness Month? Or that September 8^th-14^th is National Invisible Illness Week (which encompasses A LOT of illnesses that cannot be seen with the naked eye)? Neither did I, until I became part of that community.

I suppose you become so much more AWARE when you join a community that you never knew existed and never really wanted to join. Who wakes up one morning and decides that they never want to eat normally again nor digest their food properly? Yeah, that was TOTALLY on my mind in March 2010! Or who decides that they want to feel like they're on the Mad Tea Cup Party when, in fact, they're sitting on the couch? Didn't remember signing up for that in college. Nor do I ever remember asking for migraines, that ice-pick-in-the-head feeling...sometimes for days...but, hey, that's life sometimes!

The best I can do is educate. Help people realize and understand that, while I may not LOOK sick on the outside, my insides tell a completely different story. When you meet me, you see (generally speaking) a smiling, happy, sarcastic, silly person. That's just who I am. I do not wear my Gastroparesis, migraines, or vertigo on the outside. I want to portray to those around me that, even though I have this disease, it does not control me and I am going to smile even when I feel yucky. Is this portraying a false sense of what Gastroparesis is? I don't think so because I am very honest about what it does, people have seen what it has done to me physically (weight loss); but by the same token, I cannot change the fact that I have this illness, so I am going to at least be cheery!

My hope is that people will feel at ease about asking me about Gastroparesis. Be aware that August is Gastroparesis Awareness Month and wear green—when it comes back around—in honor of all of those living with this disease. I hope that you'll also remember that September 8^th-14^th is Invisible Illness Awareness Week and think of someone you know that has an Invisible Illness and give them a hug. Sometimes people worry about eating around me, cooking around me...don't! Food is a part of life! I LOVE watching the Cooking Channel...I know, it's ironic, but I do! I told you, I'm funny and goody that way!

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!

The Beginning of My Journey

My name is Christine and February/March 2010 is when my life changed forever. That is when I first became ill with a mysterious illness that took doctors until September of that year to (more or less) figure out what it was--Gastroparesis. Of course I didn't necessarily care WHAT it was, I just wanted it to STOP!! Little did I know that it (most likely) never would. Let me explain:

In medical jargon Gastroparesis is defined as: a condition in which the muscles in your stomach don't function normally.Ordinarily, strong muscular contractions propel food through your digestive tract. But in gastroparesis, the muscles in the wall of your stomach work poorly or not at all. This prevents your stomach from emptying properly. Gastroparesis can interfere with digestion, cause nausea and vomiting, and cause problems with blood sugar levels and nutrition.

In easier to understand terms: when I eat food, it sits there and makes me feel sick to my stomach because it can't be mashed up properly, so it takes the path of least resistance...UP! Other times, I'm just plane not hungry. A simple sip of water makes me full.

Whichever definition works for you, that (and, really SO much more) makes up Gastroparesis, Because of the challenges of eating and keeping food down, a person with Gastroparesis tends to run into nutritional status issues. I, luckily never have. Dehydration is another possible problem one can face when living with Gastroparesis. I struggled A LOT with that at the beginning, making 2-3 trips a week to urgent care to be hooked up to an IV. Luckily I haven't had to do that in 3 1/2 years!

Early on I had botox injected into my stomach to relax the pylorus, but that only ended up making me sicker! (See, ladies, botox isn't all it's cracked up to be!) I tried a slew of medications over the next couple of years. Some designed to help motility (food to move through the gastric system) along with ones to help me stop vomiting...none of them worked. Some of them even came with some not-so-friendly side effects, so those got pitched pretty quick, let me tell you! Finally, after a year of dealing with this (as well as sudden onset migraines and vertigo [vertigo for a year straight!]), I just put my foot down and said "I am going to conquer this! I am LIVING with Gastroparesis, not suffering from it! I will be fine!" and decided that I would be able to drive and work again. It took a couple of months, but I made it. It wasn't until April of 2011 that I was able to drive and work again, but I did it!

Am I cured, now that I have decided to start this blog 3 years later?! Absolutely not! I have hit some major snags in this road called Gastroparesis, but you know what? I live my life the best way that I know how. I have a new best buddy--Alfred--that I'll tell you about soon and what that's like. And you know, if Gastroparesis is new to you or old to you....Keep fighting! Keep living! All of our experiences are different, but a lot of them are the same too! We're fighting the same fight against a disease that doctors know SO little about and we've got to stick together! God, family, friends, and a good sense of humor has helped me through this. If you need a friend, I'm here, just leave me a note!

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.-Jeremiah 29:11