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!