The Girl With Gastroparesis and the Emergency Room

Making the decision to go to the ER is a difficult one for someone with a chronic illness. You already know that there's not going to be much that the doctor's can do for you, but, at the same time, you want someone to help you. 

That was the case with me last night. 

But being in as much pain as I was in, I just couldn't bare it any more...so in I went. I had my blankie, my hoodie, everything I needed to be as comfortable as possible in that cold environment. 

When the doctor came in he said he had looked over my chart and said that my last gastric emptying study had been "iffy", whatever that means. Whenever the doctors bring up the study they each say something different. This time it was "iffy". I wish they would come to a consensus about it. The he asked me what was going on and for how long. When I explained I had been in indescribable pain for several days he said "the ER is not for chronic conditions it's for when your stomach is bursting open."

Thanks, Doc. 

He also said "I don't care if you're a cop, a doctor, a priest, or Mother Teresa, do you use marajuana, cocaine, or meth?"...uh, no. I've never been asked that before, so that was an odd and interesting interaction. 

He, like most others--until they meet me--have never heard of the GASTRIC pacemaker, so I schooled him on the Gastric Pacemaker and it's purpose. His ears perked up then and he became fairly interested in what was going on then

He did some tests...blood, an x-ray...gave me some medicine and when it all came back normal--as usual--he sent me on my way home.

Just once I would like for a doctor in the ER or urgent care to act like they give two rips about me even though I'm a chronically ill patient. We see SO many doctors and have SO many tests and SO many procedures, why on EARTH would we want to go to the emergency room unless we have to??! A little dignity and respect would be awesome to experience when going in rather than being lectured. 

Starbucks and the Girl with Gastroparesis

Hello, my name is Christine and I am a Starbucks addict. Every morning on my way to work, without fail, I drive up to or walk into Starbucks and order my venti Java Chip frappaccino with extra caramel and extra chocolate--because I don't actually like the taste of coffee. Sometimes I don't even have to open my mouth to order, the lovely Starbucks barista already knows what I want...is that not sad? Nay! I choose to think it's good customer service!

At work I often get asked why I drink those every day or how I stay skinny drinking a gigantic Starbucks every day and the answer is simple and complicated all wrapped up in one big word: Gastroparesis. 

I'm sure I could--and should--make healthier choices when it comes to my nutritional intake choices, but sometimes it's just SO hard! And Starbucks is SO easy!  Plus, it tastes really yummy! 

Here is my thought processes behind it--and it TOTALLY works for me (I know, it's just an excuse, but whatever): I need to get calories from somewhere and where else better to get it from than a venti Java Chip Frappaccino?! ::high five if you agree:: I have such a hard time getting food in...a hard time getting anything in...but the frappaccino seems to go down alright...most of the time. It's helped maintain my weight for the most part and keep me running. If it works, it works, right? 

That's the thing with Gastroparesis, if you find something that works, run with it! Starbucks seems to work for me. It doesn't ALWAYS stay down, but for the most part, it does. At the end of the day, I try the best I can to keep my weight stable and the Java Chip seems to work for me. 

So thank you Starbucks!

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. 

The Girl With Gastroparesis Got A New Puppy

A lot has gone on in my world recently. I am a new parent!! Wait! Put your eyes back in your head...haha...my baby has four legs, a tail, barks and fur! He's ADORABLE and I know you're jealous!! He's a 7 week old German Shepherd (all black) named Major Legend--but I just call him Legend. I brought him home on Sunday and my life has not been the same. 

Last year on February 1st I had to put my Germam Shepherd, Eden to sleep (she was 11 years old and had cancer). I was absolutely DEVISTATED and didn't think I would ever want another dog. I don't believe Legend is REPLACING Eden...it's more like changing of the guard. Eden was EXTREMELY special to me--she was a Per Therapy Dog--had a fantastic personality, chances bricks, always had to touch me, and was always smiling. With Legend, only time will tell, he's still just a little Peanut. 

Having Gastroparesis has slowed me down a bit, anyone who knew me prior to getting sick can tell you as much. I am hoping that by getting Legend I will have an increase in energy--or, at the very least, he'll be able to take my mind off of a flare-up. It been well documented over the years about the healing effects of pet ownership. Dogs, in particular, seem to have a special affinity for those with special needs and illnesses. There are dogs that alert peope to when they are going to have a seizure, others who seem to be able to sniff out various kinds of cancer, and still others that can detect diabetic complications. [http://well.blogs.nytimes.com/2008/01/08/the-healing-power-of-dogs/?_r=0] 

One recent steady discovered that by interacting with a pet increases a person's oxytocin level, the hormone that not only causes us to become more happy and trusting, but, in the long-run, prompts healing in the human body. [http://www.npr.org/blogs/health/2012/03/09/146583986/pet-therapy-how-animals-and-humans-heal-each-other] Who doesn't feel better after hugging a fluffy bunny or cute dog?! 

I can personally attest to visiting people in the hospital and seeing the faces of sick people light up as they would pet Eden and talk about pets they had at home or War Veterans talked about German Shephers they had just like her as partners. Petting a dog does AMAZING things for people. As a patient in a hospital myself who received a visit from a Pet Therapy Dog, it really does brighten your day and make you feel SO much better. 

While I don't intend to turn Legend into a Pet Therapy Dog for the masses like I did Eden, I will use him for myself. Maybe he will learn to detect migraines or Gastroparesis flares. He's SO smart already, so I wouldn't doubt it. Don't EVER turn down the opportunity to have a pet visit if you see one coming. They are VERY worth it!!

Age and Chronic Illness

Chronic illness hit me like a tons of bricks just as I was turning 30...literally. It was within days of my 30^th birthday that the migraines, vertigo, and the symptoms of

Gastroparesis hit. Most people that I speak to say “you're awfully young to be experiencing all of these health problems”. I would have to say that I wholeheartedly agree with them; however, I would agree with them whether I was 20 years old or 65 years old! There is no “perfect age” to be saddled with a chronic illness.

There is this thought amongst the majority of people—and that's conjecture on my part—that chronic illness, particularly serious ones, are things that are supposed to only happen to the elderly. It's almost like Chronic Illness is like getting your license, like a morbid milestone of life. It's one that I will GLADLY pass up. Senior citizens have lived long lives, they've experienced things; therefore, the natural progression is then to have illness to occur. It sounds horribly morbid, but, I think that's how most people think life is SUPPOSED to work, whether we say it out loud or not. Sadly, Chronic Illness has no prescribed age that it begins with.

It is estimated that 133 million Americans has a chronic illness, sixty percent of which are between the ages of 18 and 64. These are not including people with cancer, mental illness, or diabetes. My particular disease, Gastroparesis, has an average onset of 34 years of age—though it can occur at any age. I also suffer from chronic migraines. Migraines are usually experienced, originally, in adolescence first and then carried on into adult life; and women have a greater risk of experiencing migraines than men.

Chronic illness has no age discrimination...

Chronic illness will touch your life when it wants to. It pays no mind to your age, to your plans for your life, or how much you will it to go away; it just comes in like a thief and alters your thoughts about everything. It rearranges your thoughts about yourself (you're stronger than you realize, trust me), your thoughts about your friends, your thoughts about your future, the healthcare system, everything! There will be times when you become overwhelmed and want to give up, but you can't! There will be times when you become frustrated with your doctors and the healthcare system and want to throw in the towel, but you can't! There will be MANY times that you hear—well intentioned, but ignorant—statements from friends and family that make you want to scream, but you have to just soldier on.

Advocacy is key in the case of Invisible Chronic Illness(es). Help people understand what it's like living in your shoes...take away the mystic...the stigma...help give your illness a voice! The younger generation can use their tech savvy-ness to their advantage and spread awareness for the disease(s) that they have. Instead of being “whoa as me” turn it into “support me”! Turn peoples' pity into a sense of pride in all that you've accomplished despite not feeling well!

Chronic Illness and Suicide...It's NOT the Answer!

It seems that suicide has touched the fringes of my life a lot recently. And by the fringes, I mean, The Fringes. It's been friends of my friends, friends of my friends through the Internet. Always people I don't know directly. But it still effects me and I still have this innate desire in me for wanting to help those TRULY effected, to cope with the passing of their friend. But it's difficult. 

I know that it's not uncommon for suicide to enter into the Chronic Illness Community. According to The Truth About Suicides, 10% of suicides that occur in Britain are a result of having a chronic illness. 

( http://gu.com/p/3xcmx/sbl) We are in tremendous amounts of physical pain, we experience mental illness, there are various physical struggles that we experience:: chronic vomiting, chronic nausea, fatigue, joint dislocations, fainting spells, dizziness, and the list goes on. Add onto it the feeling of being a burden or failure to your family and friends because you cannot participate in life like they do. You cannot attend functions like you want, there are the frequent trips to the doctor and the unwanted trips to the hospital, the copious amounts of medication. You feel like a thousand pound weight that your loved ones must lug around. 

Sometimes, giving up seems like the most logical thing to do. You'll leave behind the pain, the grief, the struggle, the countless number of pill bottles, the feeling of being a burden.

But it's not the answer..!

As someone who is living, struggling, maintaining with a few chronic and incurable diseases, I KNOW that it is not easy. I know the struggle of wanting to give up. I have been hooked up to those IVs, been to those countless doctor visits, had the feeling of being a burden; but giving up is NOT an option! I get upset and angry, but I chose to turn it around into something positive. 

There is SO much here on earth to live for! Friends, family, work--though I know not all are able to do that. There are volunteer opportunities, advocating opportunities--which can be done online if getting out of the house is too difficult at any given time. Stephen Schmidt says, "Life is filled with lots of certainties, one has friends, a lover, children, family, a task and dreams for a better tomorrow. On the other hand, death is always filled with mystery; we die alone, we leave all those earthly pleasures" (http://www.religion-online.org/showarticle.asp?title=307) We have to hope that tomorrow will be a better day, even if just a little bit. 

My hope and prayer is that no Spoonie will turn to suicide as an answer. Turn to Advocacy instead. Turn to creativity. Turn to God! Turn to a friend. I don't have all of the answers, I really don't, but I know that the answer to suicide is always to get help. If you need to talk to someone please go to http://www.suicidepreventionlifeline.org

A Quick Update

I know I've been quiet as of late and I apologize for that. Part of that is due to writer's block (ugh!) and part of that is due to being just so utterly sick. Since having Alfred turned off I have been quite ill and it's been horrible. Very horrible. 

I guess I didn't realize just how much Alfred was doing for me until he was gone.  It's like losing an old friend...you don't realize how much they mean to you until they're no longer around. I find myself continuously vomiting up anything I put into my mouth, whereas, with Alfred on, it was just a few times a week. 

Ugh! I detest Gastroparesis!

I'm venturing into the Land of Juicing to see if that has any effect on my condition before I ask to have Alfred reactived. I don't know if I'm doing myself any harm or favors by doing this, but it's worth a try. So far--only three or so days into it--I'm feeling zero change, but it takes time. 

I'll blog one day about juicing. 

I appreciate the support and prayers that I have received from around the world via Diary of A Gastroparesis Warrior. My hope is to continue spreading awareness about this horrible disease, get funding for it, and just let EVERYONE know that it's not just a simple stomach flu.