Rare Disease Day 2015

Today, February 28th, is Rare Disease Day. According to RareDiseaseDay.Org  A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.

• A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

• One rare disease may affect only a handful of patients in the EU (European Union), and another touch as many as 245,000. In the EU, as many as 30 million people alone may be affected by one of over 6000 rare diseases existing.

• 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
• 50% of rare diseases touch children.

Rare Diseases deserve funding and knowledge and research just as much as any other disease that gets mainstream attention. Gastroparesis is one such disease and just happens to be the disease that I live with. I can personally attest to, not only the lack of funding, medication, and research for this disease but also the overall lack of knowledge and understanding--or even WILLINGNESS to understand--Gastroparesis and the inevitable secondary diseases to follow. I can only imagine the horrors that other Rare Disease Fighters must experience.Logically, one can see why I, along with many others, feel it deserves research, funding, and attention as well. Hopefully, a day like today, will cause people to think about the children and men and women who live with Rare Diseases every day and stop and pray for them, put a few dollars of funding toward their disease, look into ways of helping their families (because living with a chronic, incurable disease is hard and expensive), and thank the doctors that care for these rarities.

Alfred...An Update.

The last week or so has been a whirlwind of ER visits, primary care visits, and surgical visits as well. All in the name of trying to figure out what my left sided pain is, see what's going on with Alfred--my Gastric Neurostimulator--and keep me kickin'! In between all of that was my birthday party and my actual birthday! What a mess!!

My primary care physician (PCP), didn't really think that it was a kidney infection that I had been suffering from, but intramuscular pain/costochondritis. She had me discontinue the Cephlex and try an antiinflamitory medicine instead to see if that would help matters. That still remains to be seen. 

In seeing my surgeon--which I do once a month for check-ups on Alfred--he decided to turn the Gastric Neurostimulator OFF to see if there's really any difference in my health. He said "sometimes patients think there's been no change with the device in and when we turn it off they realize, oh, there has been." So, only time will tell. It's only been 24 hours and I've noticed nothing. We also discussed the kidney infection/costocondritis debate of 2015 and he looked at my labs. He thinks it actually was a kidney infection, but to go ahead and continue with the antiinflamitory medication because it takes a solid week to take effect. 

It's really hard to wrap my head around the fact that the possibility is there that I've failed--yet AGAIN--at another medication/device that could possibly help my condition. But I have to just pick my head up and keep going. I CANNOT give up in this fight against Gastroparesis! I know that I am WAY better off than SO many of my GP Sisters out there, but it doesn't mean that I am any less frustrated. Part of me hopes that I have just been THINKING that Alfred hasn't been doing his job when, in reality, he has been. But it's going to take some time. 

The Future...Don't Fret About It!

Many people that struggle with Chronic Illnesses often worry about the future. They often wonder who will be left to care for them should their condition deteriorate. If they currently live with their parents, as I do, they worry where they will end up should their parents pass away. Or those who are married wonder if their marriage should come to an end due to tragedy or divorce (heaven forbid either one!) where would they go and who would take care for them? Or, those living on their own wonder, if their condition should take a turn for the worse, and there's no family to turn to, where would they go? All of these scenarios are valid, mind blowing, thought provoking things to think about. 

As it is, a person living with a chronic illness already feels like they are a burden to those around them. We feel as though our illness, that is already robbing us of a life, is also robbing our caregiver(s) of a life, too, which is an extra added weight to what we already carry. We often need rides to appointments, help around the house, and help with self-care; help remembering medications, bills, need comfort, and support, all a big task for one or two people to take on. 

I, of course, being the rebel that I am, chose not to worry, at all.

I cannot change my health condition any more than I can change the fact that, one day, my parents are going to pass away. I don't want or plan on that being any time soon, but if I worry over that now, it's A) going to get me nowhere and B) going to give me an ulcer that I REALLY don't need. But I know that I will see my parents again in heaven and I think that gives me solace in that area. I have a brother, several aunts, uncles, cousins, and many friends and though I wouldn't like to burden them with the Caregiver Life, I feel like I could call on them should the need arise. 

I really doubt any Chronic Illness Warrior out there would be left to their own devices by their loved ones. We have to set aside our pride and our worry of feeling like a burden and ask for help when we need it. We have to be willing to open up to those around us and stop saying "I'm ok", when we know, deep inside we are not. We need to stop WORRYING about the future and start making a PLAN for the future. Speak with those you trust and think would be willing to be your next available caregivers. Explain what it all entails. Guide them through your life and see what happens. Maybe then the future won't seem so scary. 

Hopefully my fellow Chronic Illness Warriors will come to find peace in this area of their sickness. Each phase, each area takes all of us time to work through and we all work through it differently and we all come to our own conclusions. This just happens to be mine. Though I haven't outright had a discussion with anyone, I know in my heart of hearts that my family or friends would step in and care for me. It's daunting, I know, but it just takes a little faith. 

The Birthday Girl Has Gastroparesis

Last night was my birthday party and I had a blast! Even though I started my day off throwing up and I felt like I was being stabbed in my side/stomach all day long, I still quite enjoyed myself. When you struggle every day with an illness like Gastroparesis, you take the good with the bad in stride, you just have to. 

Due to my having been in the emergency room on Thursday and not going to work Friday, I didn't have the time or energy to go shopping for decorations. I had big plans for my Masquerade Ball theme, but those all fell through because of my illness. I had to rely on my mom to go shopping for the decorations the morning of my party and hope that she would find things that would suffice. In the end, what she found was great and I just went with the minimalist approach. 

I had set up a little area to be like a photobooth with masquerade masks for people to use and a banner that read "HOORAY". The dining room table held my cupcakes and had flat masks with feathers on them as well as mason jars filled with black and white M&Ms. Like I said, a minimalist approach. 

Every year I cook for my friends and this year, despite feeling so ill, was no different. This time I cooked a chicken and vegetable soup, chili, and a corn cake/bread. Everyone must have liked it because everything was gone pretty quickly! The only thing left behind was some of the soup and I sent that home with someone. 

We played the annual game How Well Do You Know Christine, a quiz-like game comprised of fill-in-the-blanks and multiple choice questions. It's just a silly little game to give my friends a way to win some candy. Then we played Draw A Cake On the Back of A Paper Plate While the Plate Is On Top Of Your Head. Everyone did a fantastic job and it was so hard for me to pick the best one, but I ultimately picked my friend Jessica's because she also wrote "Happy Birthday" on her's. But it was SO hard to chose!

We then had cupcakes--I don't have a cake anymore, there's always too much left over--which are made by the lovely Midnighy Bakery. She put different kinds of masks on each cupcake and they looked fantastic! And they tasted great, too! I only ate half of mine though. 

I so appreciate all of my friends and family that came out to celebrate with me. It means a lot! I think they had a good time...I know that I did. Despite feeling the way I did, I wasn't going to let it ruin my time with my friends!

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! 

Riding the Hallway Gurney

Spending my Thursday from 2pm to 8:30pm at the Kaiser Emergency Room is not my idea of excitement, but that is exactly what I did with my afternoon and evening. Let me be one--of countless numbers of people--to tell you::Chronic Illnesses are like vampires and they suck! They steal your life, your joy, your friends, your family, and--if that isn't enough--your money. 

I digress...

I have had left side abdominal pain for a couple of days now--my left side hates me--but I didn't know if it was due to my recently Gastric Neurostimulator adjustment or something else, so I ignored it. Today the pain was so HORRENDOUS I was wanting to double over while at work--can't exactly do that in front of a bunch of teenagers. I gave in and drove myself to the ER thinking "it's the middle of the school day. People will be at work. Kids will be at school. I'm golden!"

WRONG!!

I checked in pretty much at 2pm on the nose; I didn't get put into a bed--a gurney--until 5:25pm! Sweet Mother Of Pearl! My gurney was also in the
hallway...next to the nurse's station...a filing cabinet...and a stone's throw from the check-in area. I know what EVERYONE'S shoes sound like!

Finally, the doctor came (one I had around Christmastime) and we talked about what might be going on. He ordered blood and urine samples--the usual. FIFTEEN MINUTES LATER the nurse came to start the IV and ask me to go change into a gown and do the sample. I think everyone was just working in slow motion. 

Around 7:45 the doctor came back to let me know I have a kidney infection...again. There doesn't seem to be a way to tell WHY I've gotten another one, but because there's pain with Gastroparesis, it's hard to discern the kidney infection pain from the Gastroparesis pain. He ordered for me to get a little more morphine before I was released and he sent me home with antibiotics, Phenergan, and pain meds. 

Being home now in my comfy bed feels nice. My tummy still feels painful, but I'm in a bit of a blissful fog still. I highly desire what I call a "left-ectomy" as that is the side that always gets the kidney infection, has Alfred my Gastric Neurostimulator, and is close enough to my stomach--haha. Any takers on giving me that left-ectomy, give me a call!

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

Turned Down For What?! It's Shocking

Today was the "big" appointment with my surgeon, Dr. Marujjo, and the representative from Enterra, the company that makes Alfred, my Gastric Neurostimulator. Going into an appointment like that is like going into the original appointment, you just don't know what to expect, so you try to go in with a blank mind--not hard to do, I'm blond--open mind! I meant, open mind!

First of all, I was COMPLETELY distracted by the fact that the Enterra rep looked uncannily like John Legend, but that is really NOT pertinent to the story, I just had to share that little tidbit. He was very friendly and nice! 

On to the juicy stuff (that's not that juicy)...

Dr. Marujjo and Mr. Enterra (I can't remember his name) asked me where I've been experiencing the shocking at, so, as per usual when in that office, I lifted up my shirt. I explained to them that, like today, I experience shocks where my stomach (the organ) is, but I also experience shocks below my ribs right above where Alfred is. It doesn't HURT, it is just incredibly disruptive. 

I was then asked if there is a specific activity that causes the shocking to occur? I explained that I can be sitting, standing, or sleeping and it will start up. My stomach is nondiscriminatory about everything! 

Together, Dr. Marujjo and Mr. Enterra used the whizbang machine that's used every time I go in to check the settings and determined that it was best to lower the gigahertz, zapahertz, wowitreallyhertz...all the numbers that are discussed is Greek to me, so I just nod and smile and wait for it to be over. I know that Alfred was turned down. 

I worry about the shocking stopping. I worry about the nausea getting even worse than it already is now that Alfred has been turned down. It didn't dawn on me to ask whether or not Alfred might be defective, but I go in again in two weeks, so we shall see how things are going during that time. 

So, I guess time will only tell...

I'm Just...Tired

I stay pretty positive most of the time, but even in my positivity I can be honest and say:: I'm tired. I'm sick and tired of being sick and tired. I'm tired of throwing up all of the time. I'm tired of being TIRED all of the time. I'm tired of putting on a facade all of the time. I'm tired of the pain. 

I'm just tired...

For once I would like to go to bed, sleep through the night, and wake up refreshed in the morning. For once, I would like to eat something, even something SMALL, and not feel pain and nauseous afterward. For once, I would like for my stomach to not hurt twenty-four hours a day. 

For once, I would just like to have a break...

I don't want to worry about what I'm putting in my mouth any more. I just want to eat something because I like it. I don't want to worry about going out and doing something with friends. I just want to go out and have fun. I don't want to worry about taking medications every day. I just want to get up and go. 

I just want to have fun...

I'm tired of frequently missing out on serving at church. I'm tired of missing out on parties. I'm tired of having to tell people "no" when they ask me to do things with them. I'm tired of sleeping through weekends. 

I'm tired of occasionally missing out on life...

Even though I am tired, even though I am sick, even though I feel this weariness I just cannot give up. If I give up, Gastroparesis wins and I can't let that happen. I met shed a tear, I might grouse, and grumble but I need to fight through this tiredness and pain and fatigue like the warrior God has made me!  

Alfred...An Update

I knew going in to getting Alfred that the surgery was a fifty-fifty chance of working. I think keeping that in mind has helped keep things in perspective for me. The last (nearly) six months have been...not what I had hoped, I suppose you could say. Things haven't been HORRID but they haven't been all sunshine and roses either. But what should you expect when putting a foreign body into your stomach, right?

Almost since the get-go when I would go to get Alfred turned up, he would be moved down to a default setting...all on his own--little stinker! The doctor would move him past the numbers he had put him at previously and then, when I would come back again, Alfred would be back at the default setting again. Stinker! 

Now, for the last month or more I've been experiencing spasms, shocks, ticks...I don't really know what to call them. They don't hurt, they're just annoying and bothersome. So now, come FEBRUARY 11th, I get to meet with the representative from Enterra, the company that makes my gastric neurostimulator to find out what might be going on. 

I haven't lost hope in Alfred...yet. Maybe he just needs a little kick in the pants or something. Or maybe a little switch to Alfred 2.0...I don't know. All I know is that I trust in God's plan for me. I have to! 

My Dog Eden

A year ago today my best friend went to Doggy Heaven. Putting Eden to sleep has been, by far, the hardest thing that I have ever had to do and keeping my act together today has not been easy. Sure, Eden was only a dog...but she wasn't JUST a dog. She was probably the best dog you would ever meet. She was my Baby Eden.

 

I picked her out when she was just a mere two days old, visited her as often as I could, and took her home on Christmas Eve. She was unique in that, she ALWAYS had to touch me when she was riding in the car--she was a Mama's Girl, tried to save me from drowning in the pool--even though I wasn't, and protected me from vicious people at the vet--it was an old lady, but who's keeping tabs?! She was my Baby Eden. 

Eden was a German Shepherd. Big, beautiful, intimidating looking...she thought she was a chihuahua, but we won't hold that against her.  She wanted to play fetch with her ball...or her brick--she wasn't picky--with anyone who would play with her. I trained her to become a Pet Therapy Dog, so we spent weekends at the Veterans Hospital and convalescent hospitals for the first 4-5 years of her life. She loved to make others happy, even if all that meant was climbing up into their hospital bed with them. She was my Baby Eden. 

Once I became sick, she became MY therapy dog. Her job became to make ME feel better. To make ME happy...and she did. Though I couldn't do much more than sit in my dad's shop on the ground, she would bring me her rock to throw and I would hide it in a box. She would entertain herself--and me--by trying to find it. She would see I got tired easily, so she just sat with me. She was my Baby Eden. 

As I grew strong, she would go on walks with me and follow me into the nearby hills by our house. She followed me around our property, never wanting me out of her sight. She was always at the gate watching me leave for work and always waiting there when I came back. She was my Baby Eden. 

It's hard to believe that it's been a year since I had to take Eden in to be put down. And it's hard to believe that I even had to make that decision in the first place. But I had 11 years with her that were AWESOME! She made me smile and laugh SO much. She put up with so much...being dressed up, cried on, squeezed, teased, and never once got grouchy about it. She was the perfect dog. Goodbye, my Baby Eden.