A Frustrating Subject

The subject I'm about to write about is a hard one because you know that...mmmm...90% of the time people mean well when they suggest supplements, medications, and drinks for you to try when you're chronically ill. They don't stop to think that maybe, just possibly you've tried them before or that they might, just possibly won't work for you. Or even still, that they might be harmful. 

Because, you know, their "uncle's best friend's cousin's neighbor has something VERY similar to what you have [enter product name here] cured them of it right away!"

Since I've gotten sick I have been schlept every product known to man. Essential oils of ALL kinds, creams, powders, magic pink drinks, voodoo doctors, juicers, grinders, gluten free diets, diabetic diets, Gastroparesis diets and I am telling you NONE OF THEM HAS MADE A DIFFERENCE!

I'm not being cynical. I'm not being ungrateful, I'm not being a Debbie Downer. I'm not being untrusting of God, I trust Him COMPLETELY!

But what I AM saying is this...

People with chronic illnesses often do not feel HEARD. When we post about our illness(es), we aren't asking for attention, we are (most of the time) explaining what it's like to be us. If we say that we're having another stint in the hospital or having another round of testing, we don't want your pity, we want your understanding When we post about Awareness Days, we are asking for you to stand behind us and for your support. 

If this post hits home for you AS THE PERSON SCHLEPING ONE OF THE PRODUCTS, please don't be offended. I'm not pointing fingers at any one person. I'm not angry that people do this, I'm just frustrated. Upset that "no thanks" cannot mean "no thanks". If the fact that I decline your product offends you and my "sick person posts" annoy you, then Unfriend me. It's simple. My choices as a chronically ill person do not directly effect you. It's that simple. I cannot spend energy worrying about offending people over my choices. 

Make Valentine's Day Green

Valentine's Day is normally all dressed up in PINK hearts and RED kisses for those in your life that you love. You go to the store and buy a sweet card and some pretty RED roses and maybe get some yummy chocolates and then head out to dinner. But what about the person who can't exactly participate in a normal meal? What if that person is restricted by the confines of Gastroparesis?

Maybe this year you can do something special and make Valentine's Day GREEN!!

Green is one of the awareness colors--if not the color--for Gastroparesis and by changing everything that is typically red and pink about Valentine's Day for the person that has Gastroparesis in your life, you are showing them support. And that is SO much more meaningful than a box of chocolates--but maybe not as yummy (haha)! 

I would like to challenge everyone to wear something GREEN on Valentine's Day. It doesn't have to be an entire outfit--don't want to look like Kermit the Frog--but a shirt, sweater, or a scarf and then make a sign that says something to the effect of::

I hope that as many people in as many countries as possible will take part in this movement. As a person battling this disease, we NEED to find a cure...NOW. 

So I've Been Diagnosed With Fibromyalgia

I went to the doctor this morning--an early Christmas present to myself--because I've been experiencing the worst joint and muscle pains known to man. There have been mornings where I didn't know if I would be able to get out of bed. Every possible joint in my body, including the itty-bitty ones in my toes and fingers hurt.  It's quite flabbergasting. 

This past weekend was the last straw. 

I had a photoshoot with my dog at a nearby train museum and I had a hard time keeping up. By the end of the afternoon I had such a hard time coping with the pain that I wanted to cry. But that's life sometimes, right?

Not with this pain. It feels like someone is SHOVING their thumbs into my joint sockets and twisting. It feels like an elephant is standing on my femur. It feels like my blood has been replaced with lava from a volcano. It feels like my hands and feet are on fire. It's inhumane. 

The doctor diagnosed me as having fibromyalgia this morning. Yay, one more diagnosis. One more incurable disease. One more disease whose only treatment are pills that I cannot really take because of my gastroparesis. 

Being chronically ill...it sucks. Really badly. 

Now, with this new diagnosis of fibromyalgia I hurt, all of the time, which sucks because I am a touchy feely person. I love to hug people. I love getting hugs. But it hurts. I don't want people to stop and I don't want to stop hugging people. 

The chronic illness life...it changes you. 

Invisible Illness Week

It is Invisible Illness Week. A VERY important week to many people. 

And I'll tell you why...

There are estimated to be 130 MILLION people with at least one moderate to severe invisible/chronic illness in America. This means that they do not use a cane, walker, wheelchair, or other assistive device to get around. They live a life of pain, nausea, mental sickness, vomiting, etc without anyone else knowing because, when you immediately look at them, you have no idea any of this is going on. 

Due to the fact that one does not LOOK sick upon sight, doctors, friends, and family often dismiss the symptoms that the patient is complaining of; thus, suicide rates are high among those within the Invisible Illness Community. Up to 70% of suicides are reportedly related to chronic illness or physical pain. Sadly, half of those who commit suicide within the Invisible Illness Community are under the age of 35! This is a DAUNTING statistic. 

From my own personal experiences, I can tell you that, having an illness that is not immediately noticeable to people sucks. Having ANY disease sucks PERIOD, but having one that people can't SEE and IDENTIFY with is the pits. Having an UNPRONOUNCEABLE disease is no fun either (but that's trivial). 

At the end of the day, we want...

LOVE...

AWARENESS...

UNDERSTANDING...

COMPASSION...

PEACE...

EQUALITY...

When I Blog...

Sometimes it's hard for me to blog about my life as a Chronic Illness Warrior. Sometimes it isn't. I enjoy writing...it's an outlet for me. It's a way to connect with others going through the same or similar situation as I am going through. It's a way to make, not only MYSELF not feel alone, but others out in this great wide world who are struggling, know that they are not alone either. 

It's also a good way to keep family and friends that I don't speak to or see on a regular basis informed on the latest and not-so-greatest. When you go to the doctor or emergency room or urgent care as frequently as I do, blogging about it in a (fairly) humorous and informative way helps your loved ones know what's going on with your health without worrying them to death. 

The only time blogging, facebooking, tweeting, or Instagraming about your health becomes...aggravating... is when people, Lord love 'em, try to help. I have been offered all kinds of "healing" and "helpful" pills, creams, oils, powders, liquids, and referrals to doctors that it is not even funny. I know that people only mean well and they don't want to see someone they know suffering with an illness, but...BUT, don't you think I've/we've tried everything under the sun?

How does one handle this exactly? You never want to OFFEND anyone! And you don't want to seem ungrateful. They're trying to HELP! 

I have learned that I just REALLY have to explain the ins and outs of my disease(s). For example:: If I cannot keep water down very well, how am I going to keep that pill down? But thank you for thinking of me! 

Life as a Chronically Ill person is not for the faint of heart. Sadly, you have to think about how your disease affects those around you as much as it affects you. It's not something that is your own, it's something that becomes everyone else's because they either think you're A) selfish, B) not trying hard enough to cure yourself, C) THEY have the cure, or D) they stop caring. 

And then...sometimes...you even wonder the purpose behind blogging and sharing...but you know that you have a story to tell. 

The Domperidone Journey

The journey to even be ACCEPTED to take Domperidone is a daunting one. You must first consult with a GI that can prescribe it, then have a Gastric Emptying Test, an upper GI, blood work, and an EKG. If everything checks out, THEN you can start Domperidone.

For my particular health care facility, you can only get it at ONE pharmacy and they're open at very specific hours, so it made getting it really hard. But, on the positive, at least I don't have to go to an outside pharmacy! (Yay!)

I started taking Domperidone a week ago,  four doses a day (one tablet 30 minutes before each meal and one at bedtime) and within a day or so I was getting pretty bad headaches by the second dose of the day. By the third day, I noticed I was feeling even LESS hungry than I already feel normally and, to make matters worse, I was starting to feel constipated despite taking Linzess daily. 

Often times I think people expect miracles from medication in a short period of time, so I pushed on feeling the way I did. Over the weekend, however, I was like a zombie and that was it for me. I emailed my doctor about how I was feeling and he suggested discontinuing Domperidone to see if there is any change in symptoms. If so, then I cannot continue with that treatment [insert sad face]. 

Gastroparesis is an ugly, confusing, difficult disease that nobody knows much about. I keep my head up and keep marching on and doing my best because I have to. I encourage everyone out there with it to do the same. Just because my Domperidone journey seems to be a rocky one doesn't mean that yours will be too, try it if you qualify. It never hurts. 

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!