I Love Photography...I Miss Photography

Josh Head of Emery

I have always liked doing concert photography. That has always been one of my passions. I was That Girl, that would show up to a show obscenely early in order to be in the front row, that would wait through the lesser known bands for several hours—and a TON of sun—to get to the headliners. I wouldn't leave my spot to get food or go to the bathroom because I was front row center. I would travel hours across states to go to festivals to see my favorite bands. Again, muscling my way to the front with my camera in order to get some good shots. Not because I was shooting for anything or anyone specific, but because it was something that I enjoyed doing.

I don't know how many times I've been body-slammed, stepped on, kicked, grabbed, and strangled by microphone wires because of being in the front row trying to get that “money shot”. I would headbang, mosh, and scream right along with the band and the other fans, not because I was trying to fit in, but because I

Andrew Schwab of Project 86

 was having just as much fun as they were. I was no Belieber, I was a metalhead, an emo/screamo listener, lover of nu-metal...in short: I like the LOUD stuff! You don't listen to bands like P.O.D, Project 86, Emery, Demon Hunter, and Love & Death and have the volume on 5...you crank that baby up! I knew I was always guaranteed to have pictures filled with wild hair, beautiful tattoos, sweet guitars, and wild stage antics. I never knew what I was going to get, but I knew it was going to be amazing!

And then Gastroparesis happened.

Noah Henson of Pillar

I remember the first music festival that I went to after getting sick in 2010. I hadn't been diagnosed yet, I was wheelchair-bound, unable to eat or drink much of anything, and vomiting up pretty much everything. I was miserable. But I have been going to Spirit West Coast since 1997 and my favorite band, Pillar, was going to be there and I wasn't going to let being abhorrently ill prevent me from seeing them. Sure, I couldn't walk, I could barely stand, my vision was sketchy...in short, I was a mess. I got my wheelchair up to the front of the mosh pit and I stood up and, camera in hand, rocked out taking pictures through half of the show...and then I couldn't take it anymore. But I got some pretty sweet shots! That's all that really mattered to me. I wanted to get myself that perfect shot and make sure that I was up front for one last Pillar show.

Brian "Head" Welch

A few months and a couple of diagnosis later, I attended a Red, Disciple, and Brian “Head” Welch (Now his band is called Love & Death) show. Again, I was as close as I could get, this time with a cane, and my camera in hand. I had such a good time. But, just like the time at Spirit West Coast just months before, I pooped out very quickly. Instead of being able to stand the entire show like I used to, taking shots in quick succession, it had turned more into a few snaps and then sitting. Not eating will do that to a person. But, like before, at least I got some good shots and walked away having seen (and met) my favorite member of Korn in his new band.

Since the arrival of Gastroparesis into my life I have not attended an actual stand-alone concert, I have only attended a couple of music festivals, and that has been hard for me. For someone that used to go to concerts CONSTANTLY, not having been to one in ages, is a bit heart wrenching. I have not picked up an actual

Soul Glo Activator of Family Force Five

camera in...I cannot tell you how long. I used to do photoshoots for people on occasion and I LOVED it, but that's hard for me, as well. I tire easily from picking the camera up and putting it up to my eye, getting up and down from the ground, and the simple act of catching shots or thinking up shots is taxing. So, unless a client can understand that, then I'm out of luck.

I'll admit, it's hard not to dwell on the things that Gastroparesis has taken away from me. But when you look back on the things that you used to do and realize that you just cannot do them anymore, it's hard not to become melancholy. I guess you jut have to learn how to adapt and make a new way for yourself. In a sense, photography hasn't been COMPLETELY taken from me...I still have my iPhone! Take THAT Gastroparesis!

The Sunrise using my iPhone

The Girl With Gastroparesis and Her Obsession with Wicked

I have a slight obsession with the Broadway play Wicked. Ok, slight might not be an appropriate adjective, but I don't know if there's a stronger word for it. I have seen the play--brace yourself...10 times(this Saturday will mark my tenth time)...yes, I said TEN times, here in California and I could see it ten more. I have read the book, bought the sound track, bought a necklace (Elphaba's, of course), dressed up as a character from the play (Elphaba, of course), attended Behind the Emerald Curtain, and watched as well as downloaded videos from the play. 

Hello, my name is Christine and I am a Wicked addict. 

There is just SOMETHING about that play that resonates with me...deeply. I identify, very well, with Elphaba (The Wicked Witch of the West). She's an outcast, misunderstood, feels unloved, IS unloved, everything you can imagine. However, she's EVERYTHING you wouldn't think of when the Wicked Witch comes to mind. She's a fighter, she's a champion, she wants to wrong the rights of the world...she just wants to be loved for who she is. 

That is how I feel about being diagnosed with, not only Gastroparesis, but IBS, vertigo, migraines, the surprise diagnoses of peripheral neuropathy, and (mild) POTS. These diagnosis are my "green skin", things to hold me back, make me different, just like Elphaba. But then we embrace what makes us different, what is meant to set us apart and we FLY!

Wicked has taught me more than one could EVER imagine a play about witches could! I've learned to "Dance Through Life" blissfully like Fiyero and change my way of thinking. My first several times seeing Wicked, I was healthy and blissful, but now that has all changed. I have learned that things aren't always about me--Galinda I am not! I have learned to not hide who I am or what it is that I am experiencing--like The Wizard. Each main character speaks to me in a different way and is applicable to my Chronic Illness Journey. 

I hope to one day make it out to New York to see Wicked on Broadway. That is a dream of mine. I would probably BAWL the entire time! I would love to meet Kristen Chenoweth (a fellow chronic illness sufferer [she has Ménière's Disease]) and Idina Menzel, two people who helped--and continue to do so through the original soundtrack--bring the main characters to life for me from the beginning. But, for now, I will continue to catch the show any time it comes to Southern California. 

I HIGHLY suggest that if you even have the SLIGHTEST possibility of seeing Wicked, that you see it. I promise that you will not be disappointed. See for yourself the show that has touched me so much and see how it touches you. If you've already seen it, let me know how Wicked has impacted or inspired you!

Why and How I Am Able To Work

I am one of the lucky ones and I count my blessings for that every day. I can still get up and go to work, while there are many out there with Gastroparesis that are unable. While my job is not PHYSICALLY taxing, there are days when it can be mentally and emotionally difficult on me, which is just as bad. You see, I work at a local high school as a classroom aid with kids who are learning handicapped (think book slow, but otherwise fine). I LOVE what I do, but some days it takes its toll. 

Some days I have to excuse myself from the classroom to run down the hall--thankfully it's not too far--to throw up. Other days I feel so incredibly nauseous that all I can do is put my head down for a little while. Sometimes I find myself just staring off into space because I lack energy--not eating will do that to a gal. But I'm honest with the teacher that I work with, "I may be heading out the door quick today, just so you know". I'm even honest with the kids about my condition. There's no sense in lying. I've played that game before. It gets you nowhere. 

People have suggested that I go on disability since I struggle so much with (mainly) my Gastropatesis. There are days, like the last three, where I can hardly eat and I am throwing up what I DO consume. Honestly, the thought has crossed my mind. Sitting at home sounds WAY better than dealing with teenagers all day! 

But then I think of the kids...

I have come to know and love these kids and they love me. We have bonded over the years and if I even miss ONE day, they want to know where I am. If I'm upset, they want to know why. If they're upset, I want to know why. They know they can come to me with their problems, with questions, with work they need help on, anything. Even on days when I don't feel well, they can tell and will try and make me feel better. 

It is for those smiling faces that hope that I will come to their graduation(s), wish that I didn't hurt, write me sweet notes, and tell me that I'm the best teacher (aid) that they've ever had that helps me come to work each and every day. 

I know that there are people out there that simply CANNOT work and I can empathize. For a year I was unable to work as the doctors tried to figure out what was going on with me. I feel your pain. I cried DAILY to be back with "my babies" because I missed being with them. I missed being with them during my surgery recovery period earlier this school year--even the ones that drive me crazy! (I had kids tell me they missed me yelling at them!)  I pray that, one day, you all will be well enough to return to work or have a job for the first time. 

So, I guess this is for all of my kiddos out there who really aren't kiddos anymore. Thank you for making me laugh and smile every day. Thank you for helping me forget about my problems and inviting me--whether you like it or not--into your lives. 

The Girl That's Inspired By Quotes (Isn't That What They're For?)

Personally, I love quotes. You can learn a lot about how a person thinks by the kind of quotes that they like and put out for people to see. If a person displays quotes that are self-serving or materialistic, then you know where their allegiance lies--in themselves. If their quotes tend to be about money or "making bank", then you know that person is quite focused on the all mighty dollar (which can be a good or bad thing). Quotes can be snarky, uplifting, mean, you name it! 

With this in mind, I have decided to share some of my favorite quotes and scriptures. Ones that have helped me get through the difficult times, have put a smile on my face, and are sure to do it again for me in the years to come. They come from the Bible, from people who have changed the world, and from various others. My hope is that you'll find something that touches you (or tickles you) amongst them. 

WORLD CHANGERS

BIBLE VERSES

LITERARY QUOTES

FUNNY LIFE QUOTES OF RANDOMNESS

A Sunny Disposition Goes A Long Way

In general, I am a happy person. I am not one of those people that you see who has a smile on their face for no reason--and then you wonder if you should call The Funny Farm for me--but my disposition is generally congenial. I am friendly, and even when I should be crying or grumpy, I'm not. I have decided to apply this to my Life with Gastroparesis as well.

Feeling like you've always got to throw up tends to make one want to lash out,

possibly want to strike the nearest unruly person within two feet--I plead the fifth as to whether this has happened or not--so you have to chose whether you're going to give in to that inner Hulk or remain the more mild Bruce Banner. I have chosen

to be a more peppy and present Bruce Banner--he's a little squirrelly, if we're honest with ourselves.

And here's why::

IT EFFECTS OTHERS AS WELL AS MYSELF

My ability to uplift my own attitude, no matter how horrid I'm feeling, uplifts

those around me. It doesn't mean I have to LIE to them and say that I feel well, but I don't have to act like a retch as well as feeling like one. Does that make sense? I can smile through the pain with people, I don't have to be mean, I don't have to be downtrodden, I don't have to be a spoil sport, I CAN be pleasant during my times of struggle. It IS possible. I think that is something that is forgotten, not only on the sick, but on the able, as well. 

WE CAN AND WE WILL

When we show those around us that, we are hurting, but we are overcoming that pain or that nausea or whathaveyou, it shows that we are conquerors! It shows that we can't be knocked down and that we are fighters! Laughing through pain, smiling through the tears helps immensely! I know from personal experience. 

GENERAL WELL-BEING

It has been documented in the NY Times (http://www.nytimes.com/2011/09/14/science/14laughter.html?_r=0) that laughter increases endorphins which helps a person's overall well-being. Wouldn't you

want to improve your health simply by laughing?! Let's all take a pause in our life right now and laugh. READY...AND...LAUGH!!!!!! Don't you feel better already?!

So, despite your circumstances, let out a little chuckle every now and again to help your general health! Smile! And spread some sunshine! Show someone you care, despite your own pain, and give a hug!

Please Do Not Apply For This Life

Throughout life, people try and gain the attention of those around them for various reasons. Maybe its trying to gain the attention of someone that you like by being flirtatious. In the case of an aspiring athlete, it's by sending letters and performing well when scouts

come to watch. In the case of a potential boss, it's presenting oneself professionally and providing an adequate resume. Children will even act out positively and negatively in order to gain the attention of their parents, teachers, and their peers. These are all understandable—and natural—parts of life. What I do NOT understand is pretending to have a chronic, incurable, or terminal illness in order to gain the attention of anyone.

You think I'm joking, right? I'm not.

Recently, not far from where I live, a woman was caught for faking having cancer. She duped friends, family, and countless others into thinking she was terminal, when, in fact, she was not sick with cancer at all. For what purpose? Attention. Money. Sympathy. She got what she wanted, for a time. Personally, I have come across people on Instagram who are faking being ill with various illnesses—and not even getting the actual definition of the illness correct—deleting their profiles and starting over when they're called out. Some go even as far as to tape and glue on fake feeding tubes with string and noodles! For what purpose? Attention. Gifts. Sympathy.

My question is this: Why!?!

Why on EARTH would you willingly invite—albeit falsely—these illnesses into your life? Why on EARTH would you want to be like any of us? Do you know what Gastroparesis, migraines, vertigo, and IBS has given me? Urgent care visits...Emergency room visits...IV sticks...CAT scans...MRIs...countless medications...the loss of eating many foods...the implantation of a gastric neurostimulator...and SO much more. And I am one of the LUCKY ones! Chronic Illness Warriors are all women and men who did not ASK to be ill, but, instead, became this way by no choice of our own. We

would WILLINGLY give up our illness(es)--not give them to anyone, but get rid of them—to be healthy and free! We often have to fight, FIGHT to have those in our circle understand what it is that we experience on a daily basis...the pain...the fatigue...the nausea...the unrelenting doctors visits...the loneliness we feel because people just DO NOT UNDERSTAND. And then when we feel like we've found a community where we've found people who are going through the same things we are, we have to be guarded, we have to almost quiz people to make sure that they TRULY are ill.

That is truly very sad. 

Can I be honest? Just go. Just go and be healthy and live your lives. Go be flirty with a guy (or a girl), go ride rollercoasters with

reckless abandon, go annoy your classmates. Be ADVOCATES for us, but don't try and BE one of us. It's not a life that you want. Not at all.

Motorcycle Ridin' and the Girl with Gastroparesis

I have grown up riding motorcycles. The story goes that, when I was just a mere two weeks old, my dad loaded me up on his motorcycle and took me around our cul-de-sac. He said I was fascinated with the chrome gas cap and drooled. I just say that I was adorable. Anyway, I grew up going on street rides and dual sport rides my entire life with my dad. We were even featured in the Press Enterprise (our local newspaper) once because, at that time (1992-ish) there really weren't many father-daughter duos doing dual sport rides. I was famous, in my own mind, for a microsecond.

On Martin Luther King, Jr.  Day (January 19, 2015) I decided to go ahead and get on the back of the motorcycle with my
dad to go on a ride. We decided to go to Palomar Mountain Observatory since I had never been and would take the Suzuki, a touring bike. I figured that this would be a more comfortable bike for me since it has s backrest, saddlebags, and designed for cruising. 

I was wrong. 

About twenty minutes into the ride I felt completely tortured. It felt as though my insides were rattled into my chest and swollen to about ten times their actual size--of course they weren't. Alfred, my gastric neurostimulator, didn't seem impressed with the ride either, as I SWEAR the left side of the bike rattled more than the whole thing. By the time we got to the observatory, I was done. Stick a fork in me, done. But we still had to drive home. 

Drat. 

I'm pretty sure we took the long way home, but as I didn't have the foggiest idea of how to get home or where we were, I was at the mercy of the whole experience. We got stuck behind slow people who did not know how to drive in pseudo-mountains and then again behind people who did not know how to drive in the desert. Thankfully, we passed these people. VROOM! By the time we got home I couldn't walk--imagine a wisened old cowboy--and I'm pretty sure my stomach, liver, kidneys, and spleen were all a mass of gelatinous goo. 

The take away...

Gastroparesis, post gastric neurostimulator implantation, and motorcycle riding DO NOT mix! I will be visiting fun places from the comfy seat of a vehicle of some kind from now on...sorry, Dad! This Motorcycling Daughter just cannot handle it anymore! 

        Palomar Mountain Observatory

Spoonie Wars...It's Not a Competition!

Everything in life has become a competition. People find a way to one-up each other in just about every facet of life:: I'm smarter than you...I have a better car than you...I can play

that sport better than you...I have more possessions (of some kind) than you. But when it comes to chronic illness(es) and comparing and one-upping each other, that's just...sad. When people with chronic illness(es) are saying:: I have more illnesses than you...worse illnesses than you...worse symptoms than you...worse treatments than you...

That's just horrible.

Often we list our illness(es) in an effort to connect with one another, to share experiences and advice; but in doing this it can become a competition in seeing who has the most illnesses and who has the worst symptoms and who has the worst treatments. Why does being SICK have to be a competition? Somehow it turns into—not always, but sometimes—a contest to see who has the most illnesses (from the most petty to the most severe), to see who has the worst symptoms (when people share the same disease), to

see who's experienced the worst treatments, who's seen the most whackado doctors (though those can be very funny stories), and the list goes on. I am ALL for advocacy, for educating, for comparing stories, but when it comes to people telling me their situation is worse than mine...lets not even go there. We are not here to one-up, to compete, to garner sympathy from those around us (because isn't that what we always say?). We are there to be a Community. And a Community sticks together.

The Chronic Illness Community...The Spoonie Community, needs to be one that sticks together, not one that excludes or becomes divided due to differences. We are bonded in a sisterhood and brotherhood that NONE of us wanted to be in,

but it is one that we are in nonetheless. America is a “melting pot”, so is the Spoonie Community; therefore, we should accept everyone for their variances, their opinions, their experiences without trying to put each other down. We need to remain encouraging, uplifting, and positive for each other. When we see another in our midst who is suffering, offer them love and assistance. Don't try to belittle another person's experiences compared to yours...we're all suffering in our own way.

We're all (roundabout-ly) in this together, so lets stay that way.

Kaiser Sunset and the TILT Table Test

Yesterday was my big trip out to Los Angeles to go to Kaiser Sunset to have the TILT Table test done. We didn't know what to expect, but we were hoping that it would provide some answers as to why I get "blackout vision" when I stand up and feel as though I'm going to pass out quite frequently. My check-in time was 12:45pm, but LA traffic being what it is--horrible and unpredictable--we left the house at 10am, just to be safe.

I was given instructions beforehand not to eat after midnight; no water, no food, no gum chewing, no medicine, NOTHING. So, given the fact that I struggle with eating and water intake anyway due to my Gastroparesis, it was no wonder that my veins were a hot mess when they wanted to start an IV, oh...some twelve hours after I had consumed anything! The nurse kept saying, "do you exercise? Do you drink water?" and slapping my arm. In the end, she found one and I was on the road to getting hooked up to a bunch of wires. 

The doctor came in and asked me questions about myself: what I've been experiencing, what my health is like, what I do for work, if my sibling(s) are healthy, etc. She then explained that they would be looking for a POTS (I'll explain later) response or a more vaso vagal response (the most common type of fainting) and be able to let me know. She then explained what the test would be like:: Phase One- strapped onto the table, I would be tilted up to a standing position and observed. Once symptoms occur, te test would end. Phase Two- I would either take a nitroglycerin tablet or be injected with adrenaline to elicite a response as I'm tilted back up to a standing position. 

Fun. 

Strapped onto the table, with monitors beeping, away we went. It made me dizzy instantly. And then I just stood there...and I got whoozier...and my vision got dimmer...and they're asking you how you're feeling and you're trying to mentally check everything...it's overwhelming...for twenty minutes. And then it was done. And they laid me back down and started the adrenaline infusion. When it began to go into my veins they brought me back up and...

Oh. My. Gosh!

My heart pounded SO fast! I felt so faint and actually started to pass out! The left side of my face felt like it was drooping and my body was tingling. Not fun! I heard the nurse and doctor talking and said they had the infusion going for nine minutes, so they stopped it and let what was inside me run its course. It felt as though my heart pounded forever!! 

When it was all over, the doctor came and spoke to me and my mom. She explained that the testing showed that I do have a mild form of Postural Orthostatic Tachycardia Syndrome (POTS), which I had suspected. She said my heart rate, resting, was 70 and had jumped up to 90 or slightly above. And that my blood pressure, which in a severe POTS patient would REALLY plummet, only dropped about 10-20. At one point I saw my blood pressure during the test and it said 115/53. Before the test even started it was 94/53...I'm a mess.

The suggestion I was given was to avoid caffeine (coffee/tea/etc) and drink more water. I need to avoid standing and sitting for long periods of time and if I have to stand for a long time, to "pump my legs"--like March in place--to pump up my blood. It's nice to have some answers and to know that it's not severe--which I didn't even think it was. Honestly, just having a NAME to it makes so much of a difference!

Feeling Twitchy

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

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

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

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

Paint Valentine's Day Green!

Valentine's Day is normally a day where everyone wears pink or red and thinks lovey dovey thoughts. Minds are consumed about what should be bought for that special someone in your life...chocolates...stuffed

animals...cards...diamonds...watches. Other people find the holiday rather loathsome because they don't have a significant other and just get to watch all of the people around them receive gifts from people while they're all alone. Others still just see it as another holiday that has fallen victim to commercialism. Just another way for The Man to get unsuspecting people to spend their money on frivolous items. This year, I suggest turning Valentine's Day on it's ear and doing it all differently...from the color you wear to what you spend your money on to who you think about to what you take pictures of.

Instead of wearing the obligatory pink, purple, or red on Valentine's Day, wear green for someone you know that is living with Gastroparesis...someone like me.

And instead of spending your money on chocolates that a Gastroparetic really shouldn't eat—but a lot of us love—why not donate it to an organization like G-PACT in our name. And those cutesie pictures of hearts and lovey-dovey quotes that get posted on Facebook and Instagram...switch them out with pictures of yourself dressed in green holding up a sign saying “I Wear Green For [Insert Name]” or “Go Green For Gastroparesis”. I'm not asking you to cancel your Valentine's Day, but lets paint it green and make awareness for this rare disease!

There is a hashtag campaign (for a lack of better words) going on through Facebook. When you wear green on Valentine's Day and you post pictures on social media, use the hashtags #StridingSisters and #WearGreen4GP so that the pictures can be tracked. This is all in an effort to create awareness for Gastroparesis, to get the word out there that this disease exists and that it is quite debilitating, but also that there are people out there who care, and that you can LIVE with it too.

Advocacy and awareness becomes a big thing when you end up with a disease like Gastroparesis. Doctors don't quite understand it, your friends definitely don't understand it, and your family tries to understand it; so you have to become your own advocate and educator. And it's not easy. Wearing green on Valentine's Day is an easy way to spread the word. It's also an easy way to tell a friend...Hey, I'm supporting you through your battle.