Saying Goodbye to 2014...Hello 2015!

I'm not really a New Year's Resolution kind of gal. I mean, I've made the usual ones in the past of “I'm going to eat better this year” and “I'm going to join the gym this year and get healthier”, but I inevitably break the resolution, like most everyone else, within a few weeks and I'm back to eating junk food and not going to the gym. After so many years of breaking my resolutions, I stopped making them, what's the point, you know, if I'm just going to break them anyway. I don't like being an Indian Giver or a Promise Breaker or whatever it is you might want to call it.

Now my life has been drastically changed from those New Years Resolution Days because what I would love to change cannot be Resolutioned away, it is just a fact of life that I have to accept and that is alright. It is not pleasant, but that, too, is something that I cannot change. When you're chronically ill with a disease that nobody understands and you don't look sick, your tendency is to either: a) wallow, b) lash out, or c) disengage. All three are not healthy options, nor very helpful to those around the ill person.

What I CAN change is how I handle myself, my perspective on my situation, and how I treat others during my bad days. I can let people in on how it feels to be in my shoes. I can spread awareness about Gastroparesis—without being pushy or obnoxious about it. I can remind myself that, while I am living a life that I never would have planned for myself, I AM alive. I need to smile and cheer during my victories, no matter how small they might be. And regroup after any setbacks.

So, I guess, in a sense, I DO have a New Years Resolution. It's not your typical, mainstream resolution, but it is one just the same. I resolve to be kinder on my bad days (flare days), be a better advocate for myself and other gastroparesis sufferers, and not hide what it is that I'm going through—something that I have a tendency to do.

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!

We're All Little Snowflakes

Seeing as how I'm on my fourth--FOURTH--night of no sleep, random analogies pop into my head as I lie in bed editing pictures and tossing and turning. As I was editing a picture of a snowflake ornament on our Christmas tree, something came into my mind:: stand back this just may be EXTREMELY profound here (probably not). 

We are all unique, like this snowflake--alright, it's a glass, mass produced product, but go with me here on this--because no one snowflake is the same. Each snowflake that falls from the sky is different, like fingerprints, like the DNA that runs through our body. We all are fearfully and wonderfully made by God. 

It's hard for me, as a person with a rather unpleasant chronic illness that just seems to have never ending twists and turns, to think, "Welp, God REALLY screwed up when He made me!" Or, "Gee whiz, God REALLY dropped the ball when He got around to me!" But God doesn't make mistakes because His thoughts and our thoughts are vastly different. (Isaiah 55:8-9) He knew what He was doing when, in February/March of 2010, I started to become ill and my life changed forever. I didn't understand it, I still don't understand it, but I don't have to because I know God has a plan and a purpose for it. 

Naturally I have the human instinct of wanting control, wanting to know WHY, wanting the pain and the yuckies to end, wanting the feeling that I am nothing more than a burden to those around me to end, but God has not chosen that yet for me. And, you know what? I'm fine with that. He had led me to write. To use the gift He has given me to tell my story, to tell other peoples' stories, and to reach out to others during their journey and help them along the way. 

We are all snowflakes. We are unique in our beauties and we are unique in our flaws. I have chosen to accept my flaws and turn them into a journey of a lifetime. How about you? 

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. 

I LOVE Christmas!!

Christmas is my favorite time of year. I love the lights, the smells, the music (Oh, Holy Night and Silent Night are my favorite!), the decore, the weather (but Californians DO NOT know how to drive in rain), the spirit of the season, the gift giving...you get the idea. In particular, I like getting together with my family and having that time together. I don't suppose it's any one thing in particular, but the time together as a whole. 

Christmas Eve is ALWAYS spent at church. My mom sings with the choir. My dad helps direct the traffic. And I interpret for the Deaf. Once church is over we usually go to either my aunt's house to enjoy a time of gift exchange and food or to my house where we have friends over to do the same. Either way, it's a time filled with lots of fun, love, and food!

Christmas morning always starts with hot chocolate (with lots of marshmallows) and opening out stockings to see what Santa brought a us (yes, we still do "Santa" and it's fun!)--he usually brings gift cards, a toothbrush, gum, and jewelry. After that gifts are passed out. We go the one-for-each-person...OPEN. Do that process all over again method. It seems only fair and you can see what everyone received. Once the gifts are gone we have breakfast which usually consists of scrambled eggs, biscuits and gravy, and sparkling cider--what's Christmas without sparkling cider?! Then it's off to an aunt's or uncle's to participate in family fun and frivolity!

Much like Thanksgiving, Christmas is a food-centric holiday. I've come to cope with this fact, it's American society. I cannot ask my family or the world to change what it centers it's functions around just because I cannot partake in food the same way that they do. I still like baking (I'm not very good at that) and cooking (I'm pretty good at that) and so that's where I get my food thrills instead. I adapt to my circumstances the best that I can without inconveniencing those around me because that's all that I can really do. 

Christmas isn't TRULY about food. It's not about the decorations or the music or the present.  It's about the little baby that came, that was born in Bethlehem so long ago. That is why Christmas is important. We lose sight of it SO easily in the hustle and bustle of shopping, in the angst of our pain, in the frustration of our circumstances. Don't forget Who came and why He came this season. 

Therefore the Lord himself will give you a sign: The virgin will conceive and give birth to a son, and will call him Immanuel.

Isaiah 7:14

Disneyland and The Girl With Gastroparesis

Every year around early December, myself and some friends go to Disneyland to watch either my mom or my brother (and/or his girlfriend) perform in Disney's Candlelight Procession. The Candlelight Procession is when 800 or so people carol down Main Street, USA and then form a human Christmas tree in front of the train station as a narrator--a famous person--tells the story of Jesus. Naturally, we have a day of fun and frivolity as well. It just does t feel like Christmas if we don't go!

This year I woke up with a sore throat, but I wasn't going to let that stop me from going! We first went to Space Mountain--my most favorite ride!--and I screamed like a little school girl!! Next we went on The Matterhorn and that is probably where I went wrong...I ended up sliding so low in the seat that I was on my lower back by the end. By the time we got to Indiana Jones I almost passed out...twice. I rode the ride, but didn't scream, and tried my best to play it off that I wasn't feeling really sick. I didn't succeed. There were three kids in the group, so while I took a break, someone took them on Tarzan's Treehouse--it was a nice little break. We next hit up Toon Town where the curb and I became best good friends (Forrest Gump referrence). 

We then decided to make our way to get seats to see the performance, only to discover that there weren't any left! We ended up finding a place to sit on a planter behind a tree, but you go to LISTEN not to SEE the Candlelight Procession. Anyhow, we're sitting there chatting away, everyone is eating food we brought--you only eat at Disneyland if you want to sell your first born and your arm--and I turn to my friend and tell her, "I have to throw up!" She gets up and asks a guest control about what they can do to help...there's a trash can over there...we can bring you a bag. I thought for sure they would be a little more accommodating as there was a bathroom about fifty feet to our left...nope! They then suggested I go to the restroom down the street to the right (I totally forgot it was there). My friend and I went there but got turned away because the narrator was about to come out. Ridiculous!!

Needless to say, I missed my brother and his girlfriend performing in the Candlelight Procession and spent some time in the restroom urping up what I didn't eat that day. We met up with the group outside the gates and the kids REALLY wanted to go to California Adventure, so, holding onto my friend's arm, we made our way there. Everyone road the Mater ride and I watched. Then I road Soarin' Over California with them as it's a slow hang glider-style ride. 

Despite feeling like junk the majority of the day, I had a good time. I think I was severely dehydrated and just overdid it. Plus, I think it might have been too much bouncing around after having had Alfred put in. I know it's been almost 4 months, but I think it may have all been a little too much for my body to take. Going to Disneyland to see the Candlelight performance rings in Christmastime for me, so MERRY CHRISTMAS!!

The Faces of Invisible Illness

Invisible illness is everywhere and you don't even know it. People with an invisible illness look normal on the outside, but in the inside they're hurting and dying. No amount of help from the doctor seems to help, there are very few or no medications to help what's happening, and doctors don't believe what's being told to them because they can't see it. Family and friends think you're faking or over exaggerating what you're experiencing and people couldn't phathom why a healthy looking person would need to stay in bed all day. But nobody SEES what you're experiencing!

While we may not have wheelchairs, braces, oxygen tanks, or major visible ailments, we have other secrets that we hide from people very well...malnutrition...dehydration...vitamin deficiency...nerve damage...cysts...chronic pain...vomiting...skin rashes...and so muh more. Sometimes people wonder why a person doesn't divulge their invisible illness to others. It's because we so often hear, "well, it could be worse", "you don't look sick", "maybe you should try these herbs. I bet you'd get better then!" But those words hurt. We know it's coming from a loving place, but it's not helpful. Trust me, we've tried everything! Nobody would ever dream of saying those things to someone with ALS, MS, or to someone confined in a wheelchair; but someone with an unknown, unseen illness is somehow fair game. 

I asked some of my invisible illness friends what they would like healthy people to know about livin life with an invisible illness. The vast majority of them want people to know that there are no simple fixes or no fixes at all for their illnesses. "Sometimes battles of invisible illness can't be won. Meds won't just magically make us better," Madison says. Anna agrees by adding, "the medicines I am on don't "fix" me. They just make life slightly bearable." So often we feel burdensome to those around us and we don't want to bring people down, so we plaster on a happy face, even if it's to our detriment. "We are more likely to fake being well then fake being sick. Even in the hospital I tend to act less sick of I have visitors," explains Tasha. But, at the end of the day, just know that we're doing everything that we can! "I've been dealing with this [illness] for a lot longer than anyone knows, including myself...That I don't WANT to obsess over my illness...that I'm doing my best," April advises. 

It's very well known that October is Breast Cancer Awareness Month--so we paint everything pink. We know that December 1st is World AIDS Day--so we paint everything red. We know that November is No Shave November--so the whole world becomes a hairier place. And we've all shed a tear over a Jerry Lewis Telethon--or two. But did you know that August is Gastroparesis Awareness Month? Or that August is Dysautonomia Awareness Month? Or that Invisible Illness has an Awareness Week (September 8-14)?!

Today I am going to help you put some faces and names to some illnesses that you may have never known existed. I encourage you--GREATLY--to look them up and educate yourself about them. 

This is Zoe. She has Lyme Disease, chronic migraines, chronic nausea, and undiagnosed stuff. The picture is 2 years old. She says "I was 110lbs in this picture and am 5'9", so I'm pretty tall. It was painful being this skinny. I have since gained some weight, but still battle with nausea and chronic nausea and migraines."

This is Tara. She has Gastroparesis, migraines, nerve pain (I have a metal plate and screws in my neck) the surgery didn't help much, PCOS (polycystic ovarian syndrome), severe depression disorder (MDD), anxiety, antisocial disorder, and am a recovering self-harmer. "I've been a self-garner since I was 12 years old and I am now 31 years old. I've decided that I no longer am going to let that control my life. I am 110+ days clean."

This is Emma. I have sarcoidosis. I've had three lung surgeries to remove masses from my lungs. I also have Gastroparesis, IBS, GERD, fibromyalgia, and spinal injuries from a previous abusive relationship. 

Chanel (age 23). I battle multiple illnesses though I look like your average healthy young woman. I have an autoimmune disease known as MCTD, comprised of of many seperate conditions: systemic lupus, systemic scleroderma, polymositis, dermatomysitis, and Sjgorens. As a result of these debilitating conditions, I am dependent on a feeding tube for survival. This disease had prompted many secondary conditions, including severe Raynauds, Malabsorption Syndrome, Gastroparesis, Dysautonomia, severe GERD, and many other illnesses that riddle my body, though they are not visible to the average bystander. I am in an invisible war with my body every second of every day. 

Gastroparesis, IBS, neuropathy, GERD, chronic migraines, chronic vertigo, possible POTS, bilateral subluxating patellas (really, I think I have hyper mobility issues). 

 

Keep Your Voice

Before I had this blog, Diary of A Gastroparesis Warrior, I had another blog called Christine's Dizzy Life (http://christinesdizzylife.blogspot.com/?m=1). It chronicles what life was like going through the unknown--at that time I was still searching for ANY kind of diagnosis. I suffered greatly from vomiting, nausea, dizziness, migraines, insomnia, change in eyesight...it was horrible--and still is, don't get me wrong. I wasn't working or driving and had to rely on my mother to bathe me. Due to insomnia (or change in my sleeping pattern, who knows) I often wrote my blog in the middle of the night--2am-4am. After I posted my blog, I would put the link up on Facebook and send it in some emails to friends and family, as I do now. 

One day I was approached by someone I thought was my friend, someone who I knew read my blog via my links on Facebook, she had driven me to appointments, and just been there for me in general, and she said "when people ask you how you're doing, just tell them you're doing fine, that you're doing good because you don't want to bring them down." I just politely nodded and vowed silently to not speak of my illness ever again. I decided then not to write me blog any longer because, obviously, I was "bringing people down" with it. As a consequence--though I don't know "consequence" is the right word--people thougt I had gotten better. I had not. Granted, I had worked my way from a wheelchair to a walker to a cane to walking unassisted, but I was not altogether better. But I kept that to myself for a VERY long time. 

Do I hate the person that said that to me? No. I'm sad and mad that I allowed someone who doesn't understand to quiet my voice. Don't let anyone, especially someone who doesn't understand your situation, quiet your voice. Advocacy, awareness, and a cure will not happen if you do not use your voice! Should you be whiny or obnoxious about it? Not if you can avoid it. It's not in my personality to be that way, that's why I write the way I do--how I talk--but don't take away the truth of your situation either. 

I started Diary of A Gastroparesis Warrior as a means to get back to something I love--writing--and to pay homage to Christine's Dizzy Life. But a friend also encouraged me to tell my story, the sad stories--with my funny take on it--that come along with having Gastroparesis and how to get through them with a smile on your face. I should never have given up Christine's Dizzy Life because of someone's opinion. Don't let anyone quiet your voice!

Thanksgiving—How To Cope When You Have to Cope Everyday

It's probably safe to say that Thanksgiving is everyone's favorite holiday because, well, it's the day about everyone's favorite subject:: FOOD! The house is filled with the sounds and smells of FOOD being made, decorations that represent fall and Thanksgiving (which often times is FOOD [think pumpkins, corn-on-the-cob, and various cords]), family chatting and catching up, drinks being had. It's a wonderful time! For some, though, it's a time of anxiety because they are thinking about all of the things on the Thanksgiving table that they cannot eat due to their Gastroparesis.

Gastroparesis does not allow a person to eat most vegetables, fruits, breads, and fats that are found in a Thanksgiving spread. But, not wanting to cause a problem, stand out, or be a burden the person with Gastroparesis will just make due with what is found before them...and then suffer the consequences later. For some people this can be “minor”--early satiety and the inability to enjoy any dessert—to disastrous—severe abdominal pain, nausea, and vomiting. Whatever the case may be, people with Gastroparesis tend to not relish (some do) the holidays any longer due to the food-centricness (Oh! I think I just made a new word!) of it all.

Speaking for myself only, I have learned to adapt without having holiday food anxiety. I pick and chose the food, as wisely as I can, that I can eat. I know that I have to eat in moderation and just KNOW that I will not have a heaping plate of food like my family members and not feel sorry about it. My family does not have to worry about getting hugely bloated afterward, nor do they have to worry about throwing it up a short time later, or feel nauseous, but I do so; therefore I have to do what's right for me in this scenario. Mashed potatoes and I are besties (on any given day, honestly), I splurge on stuffing because I just LOVE it, and I a small piece of turkey. I have all of the essentials (I can't have cranberry sauce, but I don't like it, so problem solved!)

My policy, though, is:: if I am having a flare day, I am having a flare day and I will tell you and I just will not eat. It's not something I can control, it's not something I can predict, and I'm not going to feel guilty about it. I know making a turkey dinner takes a quadrillion hours and I appreciate that, but I'm not going to make myself sicker just to sample your food. My family will love me, tasted turkey dinner or not. There's always Christmas dinner!

Gastroparesis, Zofran, and Me!

Life with Gastroparesis means a life spent feeling like you've got the stomah flu...or are on a wicked rollercoaster (except it's not that fun)...or have motion sickness...pick your poison. At any rate, you constantly feel like you're going to throw up. Constantly feel nauseous. You try and find ways to curb said feeling in any manner possible, whether it's laying down, sitting up, standing up, passing out, avoiding life, overdoing life, or finding a medicine that will HOPEFULLY help...even a little. 

Enter in Zofran. 

Ondansetron (INN), originally marketed under the brand name Zofran, is a serotonin 5-HT₃ receptor antagonist used to prevent nausea and vomiting caused by cancer chemotherapy, radiation therapy, and surgery. (That's Wikipedia's definition of Zofran). My definition of it is, it sometimes helps me not throw up as much. Pretty simple, right? 

There are times when I only have to take one tablet--sublingually (beneath my tongue)--and I'm fine within a half an hour to an hour. There are other times, however, when Zofran just does not want to work with me or the Gastroparesis flare is so strong and it doesn't work. That is when me and the couch become one. 

Another anti-emetic that works for me is phenergan. The only draw back--for me--is that is makes me WAY sleepy. So I save phenergan for times when I am at home and just cannot take it anymore. It is also in tablet form, small, and easy to swallow. I've found this, personally, to be the stronger of the two (phenergan and Zofran), but because it makes me sleepy--VERY sleepy, I only take it when I'm doing really poorly. 

One nonmedicinal option for nausea is ginger. I've used ginger tea and candied ginger as alternatives to medicine. Over the years--okay, it's only been 5, but sometimes it feels like an eternity--I've pumped A LOT of medicine into my body, so finding an alternative to medication is a good thing. Ginger works fairly well and puts a little pep in your breath! 

Alfred Lost A Little Of His Pep!!

Alfred and I have been together (tomorrow) for three months. Alfred being my gastric neurostimulator. The big hope is that he'll block the signal to my brain that I'm nauseous, which will then (hopefully) make me not throw up as much. Well, nothing is a perfect science, right?

I went to see my surgeon (and his intern) on Friday (November 14) because I'd been having returning symptoms...severe nausea...vomiting up almost everything. So my surgeon (and his intern) put this little gizmo on my tummy over the top of Alfred attached to how whizbang machine. As it turned out some of the settings had dropped all on their own! They prattled off numbers--it's all Greek to me--and setting calculations to each other and jotted stuff down. With a few pushes of the buttons on the whizbang machine, my surgeon (and his intern) put me up a step. 

Hopefully Alfred won't continue losing his pep. This is just proof positive that science is not perfect. It's also proof that things take time with this dreaded disease called gastroparesis. I've been told that it can take a year to a year and a half to (hopefully) get Alfred to where he needs to be. If he turns out to be a dud...who knows what the future holds for me. 

Even with Alfred's aid I struggle to maintain my weight (I never thought I would be happy about GAINING weight in my life!), struggle to eat, and struggle to stay hydrated (I have no idea what my labs are). But you know what? I am alive! And I am a fighter!

So, You've Been To See A Lot Of Doctors

Friday (November 14) I had a couple of doctor's appointments, one of which was to be seen by a cardiologist for the first time. When you've been feeling dizzy, faint, having fluctuating blood pressure, a racing heart, and chest pain you kind of want to get it checked out. Naturally, they checked my vitals and weight like and good doctor's office would. My vitals, while sitting, was 94/58 with a heart rate of 70. Now, these are considered normal vitals, but on the lower end. I do not run marathons here, people! I can barely do palates in my living room!

Anyway, it was off to sit in a room...

When the doctor came in, her opening line was, "So, you've been seeing a lot of doctors."  Instantly that put me, as the patient, on the defensive. It is not my fault that my general practitioner passed me to my neurologist who then passed me to my ENT who then passed me BACK to my general practioner who then passed me to the cardiologist. If I had a magic wand, machine, or potion that could show them what was going on, I would us it, but those such things do not exist, so I get to play the game of Doctor Roullete and hope for the best!

After giving her a quick run down of my history, about how I suddenly got sick out of the blue in 2010...blahblahblah...then told her about how my blood pressure an go from something like 94/58 at one appointment to 120/65 at the next within 20 minutes (all within "normal" range, but there's a fluctuation)...how when I stand up sometimes I feel like I'm going to faint...how I have "blackout vision" accompanying these near fainting spells...how I have had episodes of a racing heartbeat...how I'm ALWAYS a cold. 

Her attitude and demeanor changed...

Right there in the office I was given an Ecocadiogram (EKG), hooked up from stem to stern with wires as they monitored my heart:: it was normal. She ordered me to wear a heart monitor for two weeks starting the day before Thanksgiving (Happy Thanksgiving To Me!) in the hopes of catching one of these episodes (which she should) on the cardiac monitor. She also referred me to go to Kaiser Sunset to have the tilt table test done to see how my body responds to the change in position (that should be interesting!)

She asked if I had any questions or concerns and I told her that I feel like doctors think I'm a hypochondriac and that I've voiced that concern a number of times. She said that I've got legit things going on, so not to worry. I inquired about the possibility of this craziness being Postural Orthostatic Tachycardia Syndrome (POTS) and she said that it's quite possible considering what I was describing. I have gastroparesis, peripheral neuropathy, and migraines which points to possible dysautonomia/POTS. So, after the testing, we'll see what the outcome is. 

It's just interesting to me that, coming into the appointment the doctor might have assumed I was doctor hopping or something. Using words like "so, you've been seeing a lot of doctors" doesn't really make a patient feel like you're going to believe what they have to say. I think, however, that after she listened to me, saw my history, saw my blood pressure for the day, felt how cold I am, and heard my family history (BAD heart problems) her perspective was changed.

Doctors need to be mindful of their word choices regardless of who they're dealing with. In this case it was someone with chronic illnesses. But words can hurt. Even something as simple as "So, you e been to see a lot of doctors."

Red Band Society--My Perspective

Fox's new show Red Band Society tries to show what life is like in the hospital, what it's like to be chronically ill. It follows the exploits of Leo, Jordi, Kara, Emma, Dash and Charlie all of whom suffer from illnesses ranging from cancer to cystic fibrosis to an eating disorder and everything in between. These kids get to dress in their own clothes, come and go from the hospital as they please, smoke pot, get drunk, trade drugs with each other, and decorate their rooms as if they were at home. If there's a hospital out there that allows this to happen, tell me where it is!!

Life in the hospital is anything but fun. Anything but full of friendship and comradery. When you're in the hospital, you're generally too sick to entertain the thought of busting out and attending your homecoming, as the character Kara did. When you're in the hospital, you're looking at the clock waiting for your next dose of pain and nausea medications, not going out to the local dope dealer like Dash and Leo. It's often an IV pole that following you around the halls of the hospital, not a gaggle of boys because they think you're pretty like Emma. 

I've been lucky, my times spent in the ER and hospital have been few and short. I can say, though, that I was not living a life in there ANYTHING like that depicted in Red Band Society. Your attire consists of backless, shapeless gowns, no undies, and blue socks...no glamorous clothes, make-up, or hair. Your bed is uncomfortable and has standard issue blankets, nothing luxurious. No window seats with posh pillows. The food is lousy and is, generally, whatever they want to bring to you. The only decore in the room are the cards and flowers that fit on your TINY bedside table. There are no such things as decals on your window declaring your room "The Swamp" like Leo and Jordi's room. Shoot, your room could be changed at any moment!

One has to give Red Band Society a nod for trying and putting a spotlight on hospital life and chronic illness, but it's not real life, not even close. A cystic fibrosis patient wouldn't smoke pot or anything else, it would knock them off of the transplant list. It did tyke fictional Lara who was waiting for a heart. Nurses don't get to pick and chose whether they answer a patient's call, no matter how annoying they might be. And a doctor wouldn't sleep with a patient's mother. Oh. My. Word! 

Life as a chronically ill person is not fun. Your friends tend to disappear--that they got right, medical staff is curt and abrasive, your hospital stays are painful and lonely, and it seems like the cycle is never going to end. All you want to do it be better and to be normal and then you come to realize, for better or for worse, that you're probably not going to so you learn to cope. You either cope with a sense of humor, with a sense of spreading awareness, or bitterness, it's all up to you. 

But, honestly, Red Band Society got it all wrong. 

Gastroparesis And Maintaining Your Identity

When you've been diagnosed with an illness like Gastroparesis that alters your life so drastically and that you know will never go away, it's hard for it to not become all-consuming. It's hard for it to not become your whole identity and invade every part of your life. But, you know what? My name is not Gastroparesis Christine. That is not the name on my birth certificate. That is not my identity...completely. 

My name is Christine and I am a Christian, therefore my identity is in Christ. I am a daughter of the One true King. I am Christine, daughter of Terry and Mary. I am Christine, sister of Dustin. I am Christine, a friend to many (I hope!). I am Christine, a volunteer, an interpreter, an organizer, timekeeper, and aid. But I am also Christine who has Gastroparesis, chronic migraines, IBS, neuropathy, and vertigo. Because they effect me so much, they do play a large part in who I am. I advocate for my disease because there is so little known about it. But my name is still not Gastroparesis Christine. 

There are so many things that define me as a person with a chronic illness. It, admittedly, is hard to separate myself from that illness, but it takes a conscious effort on my part to remind myself of all the other facets of who I am as a person. Yes, I have lost the ability to do many things due to illness, but there are parts of me that is hasn't taken away and I will NOT let it take away! My humor will always be mine. My joy and love for helping others. My love for listening and wanting to help solve problems, that will never change. 

While I will probably be That Girl That Doesn't Eat Very Much or That Girl That Spontaneously Barfs or That Girl With the Metal Thing In Her Gut until the day that I die, I hope that I'm remembered more for my loving and caring nature. My spunk and sarcasm. My winning taste in fashion (that was sarcasm). But, mostly, for being a good Christian witness during a difficult time. 

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. 

Vertigo...POTS...But There Aren't Any Pans

Last week was my appointment with the ENT (Ear, Nose, and Throat) doctor to find out the story behind my vertigo. My surgeon figured that I had Ménière's Disease (a disorder of the inner ear that causes spontaneous episodes of vertigo along with fluctuating hearing loss, ringing in the ear, and sometimes a feeling of fullness or pressure in your ear.)--something that had been ruled out years ago. Another thought was Benign Paroxysmal Positional Vertigo (the sudden sensation that you're spinning or that the inside of your head is spinning)--something else that had been ruled out years ago. Or it could just be plain ol' fashioned vertigo. It was just a matter of getting the ENT's opinion. 

After explaining to the doctor that there are no hearing changes--she used her little device that rings and she checked if I could tell where sounds were coming from--telling her about my fluctuating blood pressure (two weeks prior, within twenty minutes I had two appointments, my blood pressure went from 120/75 to 95/75. Normal numbers, but a significant drop), having her lie me back and tilting my head from side to side and watching for the reaction of my eyes, and then sitting up and tracking my eyes. She looked in my ears and declared them "beautiful" and that my vertigo-like symptoms are not from my ears, but sounds more like something related to my blood pressure, something postural, like something called Postural Orthostatic Tachycardia Syndrome (POTS). 

With this new suspicion comes mere doctors and new tests--YAY! The ENT says that I need to most likely have a tilt table test to see how my body reacts to the changes in location and all that. If it is POTS, then my blood pressure and heart rate will be all over the place--at least that's my understanding. If it is POTS, I don't think that there's anything they can do for me. It's just one more thing on the list of strange illnesses Christine has. While my blood pressure is still, technically, considered normal, it's weird that it fluctuates so much. 

I don't understand why I have these strange illnesses that cannot be cured, cannot really be treated, but can only be monitored. But I don't have to understand it. If it try to, I'll go crazy. The only thing I have to know or understand is that God's got this. He's got a purpose, a reason behind it and I've just got to trust in Him. It's difficult sometimes--no lie--but He'll get me through. 

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!

When the Bed Bug Doesn't Bite

I was raised not to hate, but I HATE insomnia with a passion! It's an inanimate not-even-an-object, so I'm allowed to hate it, right? I think so. It really stinks being awake at all hours of the night—in this case it's 11:40pm, early for some—not knowing whether or not you'll be able to fall asleep. The illusive sleep could be for various reasons:

1. a mind that won't shut off
2. medication (new, old, or wrong)
3. pain (otherwise known as painsomnia)
4. too much sleep during the day
5. too much activity during the day
6. [enter your own reason here]

There are SO many methods one can try to help themselves slip away into Sleepytime Never Neverland

1. Prayer (I'm a big supporter of this)
2. Music (I also support this one)
3. White noise (I use this as well...floor fan AND ambient sound maker)
4. 
   Count sheep (I prefer to imagine sheep jumping over a fence) 
5. Think happy thoughts
6. [Enter your own method here]

What do you do if you just CANNOT get yourself to sleep? Obviously I am finding myself in that conundrum right now as I am typing this little ditty in—what is for me—the middle of the night. You make the best out of the situation! If nothing else, through my life with Gastroparesis, I have found that you just have to make the best out of everything or else you'll go bonkers and—if you knew me AT ALL—I'm bonkers anyway! So, after having knocked back some Gaviscon for my heartburn and a little something for the nausea, here are some suggestions on how to entertain yourself QUIETLY in the middle of the night::

1. Read your Bible
2. Reread your favorite book series
3. Start reading a new book (I started reading Unbroken)
4. Start a blog (I know it's a little bit obvious, but I had to say it)
5. Write in a diary/journal/smash book
6. Color in a coloring book
7. Listen to music on your iPod (discman's are passe, right?)
8. Write a snailmail letter to a friend (you might surprise someone!)
9. Entertain yourself on Pinterest
10. Entertain yourself on Instagram
11. Create an Awareness Page on Facebook (I'm semi-considering doing this myself)
12. Make a To-Do List
13. Go through the photos on your phone and delete old ones that you don't like
14. Check your emails and reply to them
15. Watch videos on YouTube (through earphones, of course)

Naturally, there is SO much more that you can do, those are just 15 examples to get you started! Insomnia really is the pits, but sometimes it causes the creative juices to flow so you just have to take the good with the bad and make it shine!