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!

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!!