GoGreenForGastroparesisAwarenessMonth

My name is Christine and I have Gastroparesis. Gastroparesis, literally, means "paralyzed stomach". Eating food is difficult for me, but is impossible for others who have this disease. Eating just a couple of bites of food, and sometimes sips of a drink, leaves me full. Many times I end up throwing up after eating because the food just sits, stagnant, in my stomach. I have lost over 100lbs. as a result of Gastroparesis, endured countless tests and doctors visits, many visits to the ER and urgent care, and tried innumerable medications in an attempt to dampen the symptoms of this disease. I have even had a gastric neurostimulator (a pacemaker) placed into my stomach, but it has all been to no avail. 

I am trying to spread awareness during the month of August, Gastroparesis Awareness Month, using the hashtags #GoGreenForGastroparesisAwarenessMonth and #GoGreenForChristine. 

Will you #GoGreenForGastroparesisAwarenessMonth during the month of August? Will you wear something green at least ONCE during the month to show support for this little-known disease and post it to social media? Would you be willing to post an infographic to one of your social media pages (because you know you have Facebook, Twitter, Instagram, etc) to spread awareness? It doesn't take but a couple of minutes of your time to help spread awareness about this disease, to let people know that there are people out there who suffer with invisible illness(es) everyday. 

There are MANY ways to #GoGreenForGastroparesisAwarenessMonth and #GoGreenForChristine

1. Wear something green and post a picture to Facebook, Instagram, or Twitter using the hashtags mentioned. 

2. Make a sign saying you support someone with Gastroparesis and use the hashtags (be creative!)

3. Find an infographic and post it to social media and use the hashtags

4. Donate to a reputable charity (such as G-Pact.org)

5. Share links to blogs discussing life with Gastroparesis (such as mygastroparesisjourney.blogspot.com and emilysstomach.com)

6. Anything creative you can come up with!!

The point is getting the WORD and AWARENESS out there and #GoGreenForGastroparesisAwarenessMonth!

Dating and Chronic Illness

Let's not even pussyfoot around it, dating in the real world is hard! Knowing who to trust...who's not a wackado...who's not in it for "one thing and one thing only"...shares common interests and goals...someone you can confide in...someone who is_______fill in any NUMBER of things...! It's HARD! 

Then add in a Chronic Illness that makes eating out AWKWARD and it's heightened even more!

The suggestion I get CONSTANTLY is to join a dating site (ChristianMingle, Match, eHarmony, etc) because then, SURELY, I will be able to find someone. Naturally, this comes from well meaning friends and family that just want me to be in a happy relationship with someone. One thought popping into my mind:: is there a box for "Suffers from a few Chronic Illnesses. If this is a problem for you, please do not seek to contact me." I'm thinking that this is NOT an option. 

In complete and total disclosure, I would prefer to meet someone more organically. This doesn't mean I have anything against dating websites because I don't. I actually know people who've met through them and married as a result. But for me, personally, I'd rather be at church or work or the book store and be like "Hey! Let's go out!" 

But who wants to date someone who can't really eat and barfs up her food? Makes frequent trips to the doctor and spontaneously has to run to the ER? It's a big burden to take on...It's hard to watch someone you care about in pain. It would take a special person being WILLING enough to take that into their lives. 

Coming from someone who has never really dated (sad, but true) and has a Chronic Illness, these are my thoughts on dating someone with a Chronic Illness::

1. Be Inderstanding--Understand the disease(s) with which your significant other lives with. Understand their limitations and understand their needs. Be understanding of the times when they need to just stay in for a night and understanding of times when dates get cut short. 

2. Be Supportive-- Be there for them as much as you can in their time of need. If they're sick in bed, be there. If they're hospitalized, be there. Naturally, it's understandable that you have a job or school that needs to be attended to, but being supportive in the bad times is important for the Chronically Ill. 

3. Be Mindful-- Be mindful of what works and doesn't work for your significant other. If they cannot consume a particular food, don't cart them to a restraurant with that food. If they cannot go long distances, don't plan a hiking date. Naturally, come up with things BOTH of you like to do, but be mindful of the limitations that the illness has imposed. 

4. Don't Pretend to Know Everything-- Though you may have researched and read up on the disease(s) your significant other has, don't pretend to be an expert and know exactly what it's like to be in their shoes. Your diligence for trying to understand is GREATLY appreciated, but you're still not living it. Being an advocate but not a know-it-all. 

5. Be Loving-- All ANYONE ever wants is to be loved for who they are despite what they're living with. (Gastroparesis is what I have but its not who I AM) Love your significant other for the person that they are on the inside, outside, upside, and downside. Love them for the good times, bad times, sad times, and funny times. 

I hope that this little list, by no means comprehensive, long, or in-depth gives a little insight into how to date--at least--one Chronically Ill person. If you hVe other suggestions to add to the list, feel free to comment!

Gastroparesis Awareness Month--Paint the Town Green

Nowadays there seems to be an awareness day or month for just about anything. Some of them are a little ridiculous...National Donut Day...but August (which begins Saturday) marks the beginning of Gastroparesis Awareness Month. 

There won't be any walks to raise money or awareness. 

There won't be stores sporting plexiglass boxes asking for your spare change. 

There won't be telethons on television asking you to call in pledging money. 

It's just going to be me, possibly other random people (you never know) asking that you wear green in remembers of someone you know or they know that lives every day with Gastroparesis. We'll ask you, maybe more than you would care for us to do, to post on your social media pages about Gastroparesis and what you know about it. To share links to organizations like G-Pact.org where information can be found, donations can be made, and a little more understanding can be discovered. We'll ask you to link to blogs such as this one [enter cheese-face here] where people can learn what it's like to live with a disease such as Gastroparesis and other Chronic Illnesses. Statistics may be thrown in your face more than you care to see and you may be annoyed or shocked by what  you read. 

All I ask from ANYONE that encounters the ensuing Gastroparesis spam over the month of August is to consider it with respect as you would Cancer Awareness, Multiple Sclerosis Awareness, and the like. 

As a kick off for Gastroparesis Awareness month on Saturday, it would be awesome if people would wear green and post it to social media with the hashtags #GastroparesisAwarenessMonth #GoingGreenForChristine in support of the fight that I (and MANY others) have every day with Gastroparesis so that I can find you! I hope you'll participate!! 

Testing...Testing...Testing...

Today I had my fourth...yes, FOURTH...Gastric Emptying Study done. If you've never had one, here's how it goes: 

Step 1: Eat either an egg salad sandwich or oatmeal (Today I was given oatmeal, which is a first for me)
Step 2: Take an X-ray of your belly
Step 3: Wait an hour in the waiting room
Step 4: Take an X-Ray of your belly

Step 5: Wait an hour in the waiting room
Step 6: Take an X-ray of your belly
Step 7: Wait 2 hours in the waiting room or go shopping (I chose to wait because I had a prime parking spot)
Step 8: Take an x-ray of your belly

Today, at Step 8, they didn't take the x-ray because I still had food in my belly. Oatmeal from 9:45am was still in my tummy at 1:45pm. So they had my go sit and twiddle my thumbs--I'm an excellent thumb twiddler--until shortly after 2pm. They went ahead and took the x-ray, but I could see on the

imaging screen that my stomach was still glowing. I don't know if the technician just said internally "forget it!" and went ahead and took the x-ray because by this time it had been 4 1/2 hours or if my stomach had emptied and I was seeing residual glow. I'm no radiologist. But the technician had said that she wouldn't be surprised if it comes back abnormal.

Well, duh! For almost 6 years now my diagnosis has been (some severity) of Gastroparesis.

I don't know about other Gastroparesis Warriors,  but every time I take that test a couple of things run through my mind. The first thing is: Dangit, why do I have to take this test again?! The second is: What if it comes back normal? Or not

as severe as I FEEL like it is? Instantly you feel as though your family, your friends, your doctors are not going to believe a THING you've been telling them! That's how I felt today! It's a horrible feeling!

Of course you don't WISH or HOPE to be super sick, you just want it to match up with what you're telling everyone. And of course you don't WISH or HOPE for drastic interventional measures to be taken to help you improve your life, but when eating 4-5 bites of oatmeal makes you feel sick to your stomach and you burp it up for hours, all you want to do it avoid food!

Wednesday August 5th brings yet another test, an endoscopy--more fun!--and hopefully more answers or confirmation for the new GI. Having Gastroparesis is NO joke. It is not a weight loss program to sign up for. A stomachache to take lightly. Something I am making up in my mind. It is VERY real. I would not wish this life on my worst enemy (if I even had an enemy).

The Drive-Thru Of Life

What can I say, this is not the life that I ordered...

When I drove up to the Drive-thru Of Life, this was not the life that I ordered at the speaker. I didn't ask to be feeling sick all of the time. I didn't ask to feel nauseous 24/7, to have no

appetite, to throw up my food. I didn't ask to have doctor visit after doctor visit after doctor visit. I didn't ask to have all of these stupid tests done to me that hurt and are uncomfortable. I didn't ask to hurt, to ache in my bones after spending a day at the park with my puppy. Somewhere along the way there was a breakdown in communication. Somewhere along the way a signal got messed up. Somehow I ended up with someone else's life.

But no, it's my life...

And I have to remind myself that, while it's not the life that I would have chosen for myself, it's the one that was given to me and I need to make the best out of it. Beauty out of pain sounds so cliche, but it's the truth. A person doesn't know who they're going to touch in their journey with Chronic Illness, so you have to chose which Path you're going to take: Positive Life Changer or Life Dampener. It's really up to you.

When you feel sick and hurt all of the time, it's easy to take the road of Life Dampener REALLY easy. You can wallow in self-pity and the pity of others, live in your PJs, only shower

when the funk of life has caught up to you, and call it a day. Or you can be a Positive Life Changer and, despite the pain and struggles of your disease(s), live life as fully and happily as you possibly can (tubes, admissions, tests, and all!).

I know that the struggle of sitting on the fence between those two worlds is real, there are days when I sit VERY precariously on it and want to take a not-so-pretty swan dive

right into Self-Pity-Land. I did not want to be sick like this, I want to eat a hamburger (darn it!), and I want to be able to make plans to go out with friends without worrying about cancelling. This is no life for someone my age! But then I take a step back into reality. Counting the blessings and the positives makes the negatives of my life a little less important...Did you see how awesome the clouds made the sunset tonight?!

Yes, this is not the life that I ordered or would have remotely imagined for myself. I would not wish it upon my worst enemy. But to ease the struggles and the pains that I DO have to experience in this life that has been bestowed upon me, I have chosen to be (hopefully) a Positive Life Changer. I hope that you can find it within yourself to do the same.

Things I Wish People WOULD Say To Me

Having a Chronic Illness is really, quite possibly, one of the most awkward things to enter your life. Akin to a "Kick Me" sign on your back or a big booger hanging from your nose that nobody bothers telling you about, it's just socially something many people do not know how to handle. "What if I say the wrong thing?" Is something that I'm sure runs through the minds of many peoples' minds--or maybe not, based on the strange, random, and rude things I've been asked, told, and suggested; but I digress. 

Often times people with Chronic Illnesses dwell or warn againt the negative, "DON'T say/do thus and so..." but then we never bother to give you the other side of the coin and tell you things we wish people WOULD say or do for us. And, I think, it's because we so often dwell on the DONT

and "I rather you didn'ts" that so many of our friends are scared away. 

Come back, dear friends, because here is (my personal), list of::

A FEW THINGS I WISH PEOPLE WOULD DO::

1. Ask how my health is, not how are you but how is your health? And then listen with intent and purpose. So many times it feels as if, when asked by friends, we aren't being listened to because we are reporting much the same thing to you (nausea, fatigue, vomiting, doctors visits, etc) but that is the mundane routine of our lives a lot of the time. We know and understand that you want us to be better, 

WE want to be better, but, for the majority us, it's not going to be mediconed, protein shaked, deep tissue massaged, or surgery-ed away, it's just...life. 

2. I wore [insert color here] in support of you and your disease and posted it on social media today because I know your disease is rare. I know that this might seem trivial, but it's not! It means that you're thinking about me, you're thinking about the cause at large, and you're thinking about getting the word out there. Every little bit helps, right?!

3. Would you like ME to come visit YOU? I live in the middle of nowhere. I know this. I've lived here since the dawn of time. Nobody wants to drive here, but somehow the distance becomes shorter when I have to drive to someone else. It would be awesome to have a person come and visit me, knowing that merely getting ready makes me tired (I don't know that I've ever said that out loud before). 

4. I looked up [insert disease(s) here] to hopefully better understand. The willingness of a friend to take the time to look up another's disease(s) to try and better understand what they're going through means a lot. You can only learn so much can through the Internet, but it still shows a willingness to learn and not just ASSUME things. 

5. I was thinking of your recently, so I dropped a card in the mail, actual snail mail, so you should be getting it soon. Receiving a card in the mail, just because, is so awesome! Particularly for someone who is Chronically Ill. Getting that little pick-me-up at random can get us through a hard time better than any medication can (trust me, you'd be surprised). It shows that someone in the Outisde World is thinking of you. When you're so often sick, you start living in a bubble and it's all routine and humdrum, so a card can do wonders. 

I hope this list, in no particular order, sheds a little light onto what makes someone who is Chronically Ill smile. Being listened to, being supported, being visited, and randomly surprised (at least for this chick)...and chocolate never hurt anybody either!!!

Domperidone...Again

Yesterday I trooped back in to see my surgeon, Dr. Marrujo, to be checked up on as far as my health goes. Since having Alfred--my pacemaker--turned off in February, I've slowly gone down hill, though it's really just been in the last six weeks that it's been really noticeable. We discussed the fact that my bloodwork came back normal--no real shocker there--and what the next step should be. 

Domperidone. 

I've taken this medication before, albeit, about five years ago, and it didn't do anything for me except make me feel weird. Since, five years ago, I had to get it from Canada and it wasn't necessarily regulated properly, I'm going to be seeing a Dr. Lim who is running a trial here at Kaiser to see if, with the proper dosage, it does what it's supposed to do. 

Like most any other person with a Chronic Illness I'm like "great ANOTHER medication". You really just want to be done with everything, if I'm totally and completely honest with you. You get incredibly tired of having medications upon medications in your nightstand and being in different trials and it getting you nowhere. 

I. Am. Just. Tired. I'm not giving up! I'm just tired. I'm sick of losing weight and gaining weight and losing it again. I'm sick of my hair dying. I'm sick of the dry skin. The insomnia. The body pain. It's just a lot to handle when all I want to do is help other people. That's what I LOVE to do. I want to help others, not be helped and it sucks. 

Pity party over. 

So now I wait for Dr. Lim's office to call me so that I can meet with him to make sure that I qualify. Then, I guess, I will start Domperidone...again. 

A Letter To My Loved Ones

Dear Loved Ones,                             May 23, 2015

Being Chronically Ill sucks! I'm sure watching me be Chronically Ill really sucks, too. There's not a day that goes by that I didn't wish that this disease would just disappear from my life—OUR lives, really; but, let's be honest, it's not looking too promising. So I guess that the best thing that we can do is buck up and do the best that we can under the circumstances. I try to look at it as a blessing of sorts—weird, I know—because I think that Gastroparesis has made me a stronger person. It's a bummer that something like this has had to come into my life to make that happen, but...

Se la vie!

I want everyone to know that I love and appreciate all of your prayers and support. I am thankful for your understanding during my difficult times and my good times, as well. Thank you for embarking with me down this adventure that is Diary of A Gastroparesis Warrior and the outlet that it has afforded me. Thank you for allowing me to educate you and whomever else out there in this great wide world about this little known disease. Thank you for just being understanding.

Please continue to be sympathetic toward days when I have to cancel plans, be a party pooper, or am a little melancholy. You know that is not my normal M.O, but just means that my normal gusto has just “gusted” out the window that day and I need a breather. Don't EVER feel bad for asking how I am, that's showing concern, but don't chuck me under the chin and tell me to “buck up” because I might buck you under the chin and chuck you out of the door! I don't expect you to understand what it is I'm experiencing, but you can ALWAYS ask me to describe it—or just admit you don't know and say you're thinking of me! Empathy and sympathy goes a long way!

At the end of the day, a simple text, a “hey, lets get coffee/catch a movie”, dropping a card in the mail does wonders for a person's mood. We all lead a busy lives, even those of us who are Chronically Fabulous—but a little thought counts!

Sincerely,

Christine

The Donut Mistake

Well, I did it, I ate a donut like any normal person would for Teacher's Appreciation Week/Day would...except, I'm not any normal person. I keep forgetting that. You would think that, after having Gastroparesis for five years and having countless tests and procedures, being poked and prodded countless number of times, diagnosed and misdiagnosed and diagnosed again, that I would remember "Hey, eating that chocolatey, doughy round thing is going to send you into a tailspin of despair for X amount of time." 

Nope! I ate that sucker anyway. And I ENJOYED it!

Since eating said donut I have been in a gastroparetic flare for a week. I have had such a difficult time consuming liquids, let alone food. My stomach has been painful to the touch, movement, and just sitting there. I have requested from family and friends alike for an -ectomy of my whole trunk, but they won't oblige--so rude. A pox be upon you donut world, this is your fault!!

...ok, maybe it's more MY fault for giving in to temptation, but I was frustrated that day and chocolatey goodness is my weakness...

Here's the thing with Gastroparesis:: there are varying degrees of it. There are certain things that I can eat that Sally can't. There are certain things that Sally can eat, that I can't. There are certain things that NEITHER of us can/should eat.  Therefore, Sally might be able to handle bread products; whereas (CLEARLY) I cannot. So, if you see me reaching for that chocolate donut again in a moment of weakness, slap me...HARD! 

I attempted onion rings today. That was a big mistake as well. Again, if you see me reaching for those friend rings of yumminess, slap my hand and scream "NO!" It'll only benefit me in the long run. Like the donut, the onion rings are not sitting well and I'm feeling quite sick. Maybe the disease is progressing more? Maybe I'm finding I have more intolerances? Maybe they've always been there and I've just turned a blind eye, who knows. Just remember to tell me "NO, Christine!" when you see me reaching for those kinds of things. 

Triggering foods stink! They make you feel miserable, they make your friends feel miserable for you, they make life in general miserable, so it's best to just avoid them. 

Goodbye, donuts. 

Guaranteed, One Hundred Percent Authentic

I am 100% authentic when it comes to my life with Chronic Illnesses. It is not in search for sympathy, fame, pity, or advice from those around me or in the great big universe; but to spread awareness for the diseases that I have. I have been chosen--I suppose you could say--to live this life with diseases that are not only pretty uncommon, but pretty miserable to live with. 

I believe that God has chosen me, as He has chosen the many other people out there who live with Chronic Illnesses, because we are strong. We are fighters. We are warriors. And, like Katy Perry says:: "...I am a champion and you're gonna hear me roar."

So prepare to now hear me roar...

It saddens and angers me when I see people accusing individuals who legitimately have Chronic Illnesses of faking their disease or faking their experiences. Certainly there are folks out there who DO fake being sick and they need help and, in their own way, are ill themselves. However, they cause a myriad of issues for those of us who battle, struggle, and fight for our lives and our wellness each and every day. They are the ones who make you scratch your head and wonder "why would you want this life?"

Now, not only do we have to struggle with our family, friends, co-workers, bosses, and doctors' doubt that we are sick, but now we have to deal with individuals attacking us on social media all because we are sharing our journeys. Sharing them for awareness, sharing them to help the newly diagnosed, sharing them for more national funding, sharing them for support. 

And then evil happens...

Personally, I have not been attacked or questioned on the validity of my Gastroparesis, Peripheral Neuropathy, (mild) POTS, Chronic Migraines, Chronic Vertigo, and IBS. The worst that has happened to me is that someone didn't like how I sited something on a blog I posted and said I was, basically, a copycat. However, almost daily, I see friends on Instagram and Facebook being attacked or talked about by individuals questioning the validity of their illness or events they've experienced. 

I have seen people accuse girls of faking Cystic Fibrosis when they CLEARLY have breathing treatments daily and CLEARLY have breathing difficulties. I see people accuse a young lady of not only NOT truly having actually miscarried early in pregnancy, but not having the painful illnesses that can sometimes happen afterward. How can you DO that to someone?!?! I've seen people going after someone with Gastroparesis that is tube fed and making statements about her being fake or an attention seeker. 

Why crush the butterfly when it's down..?

When you accuse a Chronically Ill person of being an attention seeker or out to obtain money or question their illness at all, it's like  crushing a beautiful butterfly when it's already down. Why break--something beautiful--when it's already down? It just makes you a coward. You can hide behind your computer or your phone with your anonymous name or fake account all you want, but we all know the truth that lives inside of us and what we go through daily. 

My suggestion is this:: instead of attacking, do research. If you think someone is an imposter, research them. Cross reference their facts on their disease(es). Cross reference their pictures--trust me, pictures get stollen.  Instead of being nasty and making baseless statements, check out what you know first and then make an informed move after that. 

The Chronic Illness community sticks together, so we will, one way or another, always see if another Warrior is being talked poorly about. I commend all of those Warriors who have boldly stood up for those who have been talked about, beaten down, and doubted. I pray for those who feel the need to fake an illness to try and join the Chronic Illness/Spoonie Community, it's not one you want to join. And I also pray for those who attack us Broken Beautiful Butterflies. We know the value of our lives and the expense of our illness(es), we don't need to waste time and energy on you. Take your negativity elsewhere. Finally, to the caregivers, family, and friends who support a Chronic Illness Warrior, may you be blessed and happy in all that you do! 

It's My Five Year Sick-A-Versary

This week marks something special, I guess you could say, in my life. It's not something happy, but it's something significant. Thursday February 19, 2015 marks the day that I became ill, marks the day that I first started getting vertigo, marks the day that the snowball that started it all began to roll. Thursday February 19, 2015 is my Five Year Sick-A-Versary.

I expect presents.

In so many respects it's hard to believe that it's been Five Years since I've gotten sick. Quite frankly, it feels like I've been ill for an entire lifetime. The days, the months, and the years have all blended together seamlessly into one big vomitous blur (pun intended) that will, on the one hand, never end and, on the other, has flown right by. When you're a Chronic Illness Warrior, you are not subject to space or time...it's like you're a special character in Star Trek or something. You come to remember some things VERY acutely—generally, it's things you would rather forget—and other times you stumble over your own words trying to remember even the simplest of tasks—what's my name again?

In the last five years, I have gotten diagnosed with Gastroparesis, chronic migraines, chronic vertigo, peripheral neuropathy, and POTS. I have had my gallbladder removed and had a gastric neurostimulator placed in my stomach. I returned to work after not being able to work for a year. I have been in a major car accident (that wasn't my fault, but I was able to walk away from) that worsened by symptoms. I have had COUNTLESS urgent care and emergency room visits due to my gastroparesis. But, most importantly, I made friends with fellow Chronically Fabulous people who have helped encourage me along the way.

Head shot before I got Gastroparesis

Gastroparesis has changed my life drastically. It has slowed me down, made me more thoughtful, made me tougher, more assertive, a better listener, and thinner! There are some positives in this journey as a Gastroparesis Warrior, I promise. I was overweight before I got Gastroparesis—I weighed 289lbs—and have lost 116lbs because of it; a much needed weight loss, but in a VERY bad way. I have become peoples' sounding boards because they know I will sit and listen to them, a quality I have not found in medical staff and do not want to repeat in my own life. Similarly, I find that I have to assert myself, with medical staff—No, I do NOT want to eat for synthetic cow tasting beef broth!--so I have been able to use that in my professional life working with teenagers. But, given that I feel sick CONSTANTLY, making it through the day is difficult...very difficult. Every fiber of my being is telling me to give up, you're not strong enough. Give up, the pain is too much. Give up, you're too tired to go on. Give up, it's not really worth it. But I know that all isn't true and I've become tougher because I keep on fighting despite the pain, despite the fatigue, despite feeling gross all of the time.

Five years has taught me that I can LIVE with Gastroparesis. It's not an EASY existence by any means. There are days when I just cannot get out of bed and, where there had been a time that had bothered me, now it doesn't. I realize that I have an energy limit that I have and some days it runs out quicker than others...and that's okay. I have come to realize that a day eating nothing but Cheez-Its is a day better than eating nothing. And a day spent doing nothing but breathing is better than one where I don't exist.

April 2010

July 2010

 

October 2010

December 2010

August 2015