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!! 

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.

Gastric Emptying Studies, Endoscopies, Bloodwork, and Medicines...Ohmy!

Today was an exceedingly LONG day seeing the new Gastroenterologist (and the resident) today all in the hopes of, or the end game of, getting started on Domperidone again. 

Yeah, about that...

I first spoke with the resident for about fifteen minutes giving her the lowdown on Life with Gastroparesis. How do you condense 5 1/2 years of UGH into a short visit? It's hard to do! She looked me over and then went and got Dr. Lim. 

When he came in we kind of, even MORE briefly, went over my history and what I've been experiencing on a day-to-day basis...nausea...lack of appetite...vomiting...constipation...pain...He then examined me and said that, before even getting CLOSE to Domperidoen, the FDA stipulates that I have to have, not only a Gastric Emptying Study (GES), but an Endoscopy as well. 

RAWR!!

He mentioned that, since I've had the Botox therapy in the past (once, five years ago), there have been cases of people having scarring from it and causing the stomach (in assuming maybe the pylorus, but maybe I'm wrong) to close up, so then it'll need to be stretched. That may be a possibility with me. I'm sure it's also to check to make sure there aren't any ulcers or other things going on. 

The GES is a GES...I hate doing them because you have to eat so much food and lay around with a GIGANTIC bellyache. 

Dr. Lim also had me do bloodwork to check for diabetes, as Gastroparesis is commonly thought a diabetic issue. He also checked for any thyroid problems. He wants to rule out anything that might be causing my gastroparesis and constipation/IBS and treat that as opposed to just putting me on Domperidone right away. 

I appreciate his thoroughness and his kindness. I'm just done with doctors and told the resident as much. It's nothing against them specifically, it's just the situation as a whole. When you go to the doctor almost as much as you go anywhere else and then you feel like you get little to no answers, little to no help, grief for asking questions, you just don't want to see any more scrubs or white coats. 

I'm hoping for some answers from this, particularly since I have to do an Emdoscopy...again. I hate those things. 

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. 

Musings of A Girl In Pain At 1AM

It's 1:30AM here in Southern California and I'm lying in my bed "wide awake" because everything burns and hurts. Every joint. Every muscle. EVERYTHING hurts. My jawbone and teeth ache. My hands burn as if someone is trying to set them on fire. The pain is uncanny! Even my poor little pinky toe...poor little fella! 

I do not, that I know of, have fibromyalgia. Friends have asked if its a possibility and I just say:: No, I'm getting old and I don't eat! Lack of basic nutrition will make you she in places that you didn't know we're possible of even aching--like your hair. 

In the last 3 weeks my Gastroparesis has been at 100%+ and food is a definite enemy. My mantra has been "Food Is Not Your Friend", but of course it is and it's just my cranky stomach telling me otherwise. I LOVE food and I love to eat and cook it, but right now, I want nothing to do with it. It makes me physically ill, I barf it up, we are not friends. Because of this I haven't eaten much more than handfuls of crackers at a time (last night I ate some mac & cheese!) and have lost at least 7 pounds as a result. 

On Wednesday I saw my surgeon, Dr. Marrujo, thinking he would probably turn my gastric neurostimulator Alfred back on, he didn't. He said, because it seems to not really have done much, if anything for me, and I'm doing so poorly now, I am at a crossroads as to what to do next. He suggested seeing a Dr. Lim and trying Domperidone, but I've tried that before and had no success. I was honest and said:: I don't often cry about my situation but I cried last week. Im tired. Im tired of being sick. Im sick of being tired. I just don't want to do this anymore. I don't know if I qualify for getting tunes and I don't know if that's what I'm asking for but I'm just done. He questioned what I meant by "tubes" and I said:: for hydration...for food...for something. I'm just done. I just want to go to sleep and wake up not feeling like this. 

I'm thinking he might have thought I'd lost my marbles there for a minute. 

Anyway, he changed my as-needed pain medicine from Tylenol with Codeine to Norco to see how that goes and had me do blood work and is going to see me in two weeks. In true Spoonie fashion my blood work came back normal--I can see the results online--and here I sit, aching like I've gone 76 rounds with Mike Tyson. 

I KNOW that I'm lucky that I can function as well as I do, but I can feel it slowly disappearing as the days and weeks go by. Maybe what I need is a break from work, which is soon coming. Summer break starts in a week. But, at the same time, I have no idea what I REALLY need--besides a LOT of prayer. It's all so frustrating. It's all very tiring. I just want the pain and the nausea to stop. I want to go to sleep and wake up refreshed in the morning. 

That's not too much to ask for, right?