When It Feels Like Christmas On Supply Delivery Day

Every Wednesday is Supply Delivery Day, it's like a Medical Supply Christmas that comes ones a week for those who live their lives permanently or temporarily attached to some kind of medical device. In my case, I have a PICC line (peripherally inserted central catheter) so that I can receive TPN (total parenteral nutrition) 12 hours a day due to Gastroparesis. 

At first, when all of those supplies showed up at my house along with all of the devices, it was daunting. I felt as though I was sitting in a sea of never ending syringes and alcohol swabs and saline flushes...and I didn't know how to use ANY of them! My mind and my heart felt overwhelmed by the boxes and bags of equipment splayed out around me. "When did my life become an episode of ER?" kept running through my mind. 

But as the tears began to form in my eyes and my heart raced, something deep inside me told me that I had to conquer this like I've conquered so much before it. And as the supplies were organized and my set up became part of my routine, it has all become less discouraging and more a part of my life. And when supplies begin to run low, I find myself looking forward to Supply Delivery Day!

And it's like Christmas or a birthday every week as you open up boxes and bags of supplies; mostly of things you were expecting (TPN, vitamins, alcohol wipes) and things you weren't because you forgot about them (flushes, needles, syringes, stockinettes, batteries, etc.) And, as you rifle through the newly arrived supplies, you realize just how much it feels like Christmas in the middle of June. 

Viewing these weekly deliveries as positive as opposed to added stressors to the Chronically Ill Life, it helps to manage this often intimidating, scary, and exhausting aspect of being ill. 

 

Experiencing An IV Infiltration

Have you ever wanted to know what a water balloon feels like? Yeah, me either...but I got the opportunity to early on the morning of May 19, 2016. 

I found myself in the Emrgency Room at around 9:30pm because my PICC line wouldn't flush. Erring on the side of paranoid, I went in to make sure everything was alright, particularly since I had been experiencing some chest pain. I didn't get called into triage until after midnight where they asked me why I was there, took my vitals, had me tinkle in a cup (my worst nightmare), and did an EKG. I was sent back into the waiting room with promises of being called back soon for blood work. 

Two and a half hours (plus) passed before I was called back and put into a room. 

Did you see that? Two and a half HOURS! 

When I explained to the nurse that I had a PICC that wouldn't flush and torched veins on the top left hand (so don't touch it or the shoe may fly at your head) and the rest of my veins are scarred (so good luck and God bless on finding a vein), so got her handy dandy ultra sound machine. 

And STILL had a hard time finding a vein!

But she was able to get one, on the WAY interior of my elbow. Once in place, labs were drawn and the wait began...again. An hour later the P.A arrived announcing my D-Dimer test to be abnormal (normal range is nothing higher than 499. I was 552). It was declared that I needed a CT with contrast so off I went. 

The tech hooked me up to the infusion "pump" (think sci-fi syringe looking things that bottleneck into tubing that connect to your IV) and watched as the saline shot into my IV...it seemed sketchy, but he had it continue anyway. As it moved into injecting the contrast it does it at a high rate of speed and it warms the whole body. 

Not for me. 

It infiltrated (the contrast and saline shot into my arm tissue) and caused my arm to swell quickly. Because the test was still going, the tech couldn't get the tubing detached very quickly and only could raise my arm as it continued to swell snd fill. 

It hurt SO badly!

The test was aborted and I was taken back to my bed in the ER and they did a chest X-ray. They had me massage out as much excess fluid as possible and then put ice on it. The xrays didn't show a clot (yay) and so we waited for a PICC line nurse to arrive to deal with my PICC line. 

About an hour later he showed up (he had been my night nurse a couple of nights when I had been admitted. Cool dude). He injected my PICC line with stuff called CathFlo and it got me going again. My PICC runs like a country river now (thanks, Daniel)! 

Finally, at about 9am I was discharged and went home. So, if you're keeping track, I was in the ER, basically, 12 HOURS. Initially I was thinking it wasn't going to be worth it, we can just push saline at home until it works, but it turned out to be worth the co-pay to know that a pulmonary embolism was a VERY real possibility for me that night. 

Today (Friday) the swelling has gone down significantly, but my arm is still quite tender and bigger than normal. Being a Human Water Balloon is NO fun, even if it's localized to one body part! You become ACUTELY aware of how much you use your arms for everything and when they're both rendered virtually useless, it stinks.

Be mindful of IV placement (I'm kind of screwed in this department since I have virtually no veins to use) and do your best to preserve the site once it's placed. Let your medical team know ANY time the IV doesn't feel right. You have the right to ask for it to be moved! 

Update--May 2016

April Showers did not bring May flowers for me...sadly. I've been in a rough patch lately, as many Chronically Ill people experience. Upon release from the hospital on March 11, 2016 I never really bounced back. The regimen of 3-4 Boost/Ensure a day was too much for me to handle and became less and less as the days passed until it became nearly nothing. And then hospitalization. 

Again. 

Nobody WANTS to be hospitalized, but sometimes you get a feeling that the hospital is the only place you should be. On April 22nd, that's what happened. My General Practioner decided the hospital was best and in I went. Two days in, the NG tube was placed. Two days after that, the PICC line. Clearly my situation was not improving. 

And this would be the strangest hospitalization I've ever had. 

From the time I got sick in 2010 I was given phenergan to help combat nausea and vomiting. It's always helped better than zofran and I've NEVER had trouble with it. This hospital visit, that would all change. Almost from the first time I was given it this hospital visit, I would begin to feel as though I needed to stretch but, no matter how much I stretched or which way I moved, the feeling never left. Then I would get itchy and fidgety. It was making me crazy! So they gave me Benadryl...the feeling left. The next night, it happened again, so they gave me Benadryl again...and Xanax. And the feeling left again. When my PICC line was placed, the dance continued...flush, phenergan, Benadryl, flush....I CANT BREATHE!! I grabbed my nurse so quick!! The rapid response team was called. An oxygen mask was placed. Ativan was pushed (apparently they thought I was having a panic attack or something. I wasn't. I promise you that.) I finally could breathe again. 

I am now listed as ALLERGY:: Phenergan 

To add to the oddity of the stay, though not terribly surprising, my blood pressure never broke 100. My baseline is 92/53. My blood pressure was 84/45, 73/35, and the like while in the hospital. Nobody had any answers for as to WHY my blood pressure was acting this way, so it still remains an unsolved mystery. 

Thankfully, after eleven days, I made it home, albeit with a PICC line and needing to use TPN, but home nonetheless. The veins on my left hand/arm are shot from either IV sticks or potassium and phenergan use, so the poor phlebotomists have their work cut out for them every time they draw blood--which is twice a week at this point. My arm looks like hamburger and feels like it's been run over, but with three heat packs and a few sticks, it MIGHT give a little blood. 

I'm hoping for the best in the coming months. My UCLA visit got moved to June 14th with the colleague of the original Doctor I was referred to see. So hopefully that goes well. I'll keep you posted. I don't know what I'm expecting when I go, but I'm going!

A Reflection On My Gastroparesis Diagnosis

Looking back to 2010, I can't believe that 6 years of my life have already gone by living with, not only Gastroparesis, but getting diagnosed with chronic vertigo and migraines in the same year, peripheral neuropathy in 2013, postural orthostatic tachycardia syndrome at the beginning of 2015 and fibromyalgia at the end. It feels as though any time my feet lead me over the threshold of a doctor's office I'm given yet another diagnosis or, at the very least, the prospect of yet another one coming down the line. 

(April 2010--Doctors still didn't know what was wrong with me)

I was just barely turning 30 years old when I became ill out of the clear blue sky. My life as I knew it, working with learning handicapped children by day  and interpreting for the Deaf by night came to a screeching halt and the couch and my body became one. Nurses, doctors, and specialists didn't know what to make of my triad of symptoms that happened all at once--vertigo, migraines, and vomiting. Try as they might to connect one to the other, they just WEREN'T connected. Test after test brought no answers until, finally, I was given a gastric emptying test...It gave everyone the answer::

Gastroparesis. 

Even though my life had been changed for six months prior to that, it seemed permanently sealed now that I had a name attached to what was going on. 

Gastroparesis. 

There's permanency in knowing what your disease is called. There's no turning back. There's no take backs. There's no do overs. It's only moving forward. But that doesn't mean there's a solution. And there hasn't been for me, it's just been the addition of more conditions that, as best the doctors can tell, are as a result of Gastroparesis. 

(September 2010--I had finally been diagnosed with Gastroparesis but was doing no better in terms of treatment being offered)

It would be easy to slip into Permanent Pity Party mode because of the events of the last 6 years. Trust me, a good cry and whine session happens every once and a while and then I go about my business. But taking up permanent residence in self-pity, self-loathing, or anger at others does not improve the situation. I find that a good sense of humor has helped get me through quite well. 

Luckily, after a time I was able to return to my day job, though no medication or therapy was helping my Gastroparesis. Different solutions have been tried, including the gastric neurostimulator--which recently failed, but I've been able to fight my way back to some kind of normalcy as much as possible each time. 

Hold out hope even when there doesn't feel like there is any. Even when the doctors don't know what to do for you and friends and family don't know what to say. Hold out hope that maybe, just maybe, tomorrow you could turn the corner and it'll be a better day. 

(April 2015-Loving with the gastric neurostimulator for over a year and having been diagnosed with POTS and peripheral neuropathy)

The Beauty of Spoonie Friends

Friendship is very important for people throughout life. You learn to share, to grow, to love, to laugh, and to have adventure with friends differently than you do with your family. Your friends help cultivate in you a side of yourself that your parents and your siblings aren't able to. Maybe it's because family is always there. Maybe it's because they have those same traits as you. Whatever the case may be, friends bring out a different side of you than family does. 

The same can be said for Spoonie Friends. These are beautiful, special, and unique friendships that bring out a different side of you. That speak to a part of your life that not everyone understands. It's a friendship built on shared experiences and pain. But it's one that you would not give up for the world. 

I have been lucky enough to make three good friends recently within the Spoonie Community. They're friendship during the good and the bad times helps keep a smile on my face when all I really want to do is cry. While we may or may not share the same disease(s), we share some of the same experiences:: social stigmas, lost friends/family, lost jobs, feeling of worthlessness, the desire to achieve goals, lack of understanding from medical professionals, and the list goes on. Just by being able to be there for each other via text--they all live all over the U.S--we're able to support each other, make each other laugh, and give each other ideas when we just feel too sick to use common sense. 

Spoonie friends can relate to having tubes shoved down their noses and PICC lines put in their arms and being forced to take handfuls of medications twice a day (or more). It's a friendship founded on a negative subject but, because we're survivors, we're able to turn it into something beautiful. Who else can text someone they've never actually met and talk about throwing up or having bathroom accidents? SPOONIES! Who else can you drunk text (medicated on morphine) at 2am while you're in the hospital and have the text make NO SENSE and have them just say "You're medicated, aren't you?" SPOONIES!

Everyone, whether you're part of the Chronic Illness Community (Spoonie) or not, needs friendship. You need that someone or someones that you KNOW that you can count on to be there, even through text, when you're having a bad day. Im lucky enough to have found three beautiful ladies who understand what I'm going through and are there to support me as much as they can. I hope that all Spoonies can find someone too. 

My March Madness

Spending ten days in the hospital is rough...on anyone. You get ZERO sleep because taking your vitals at 12am is of great importance, for some reason. And drawing blood at the crack of dawn is of great importance too. Not to mention the beeping, the buzzing, the patients screaming, and the random medications that get administered at all hours of the day and night. I lucked out in that I got an isolation room, so it was pretty air tight and quiet...mostly. Still not much sleep though. 

I landed in there because my Gastroparesis--and apparently IBS--were out of control. I had been vomiting for 16 DAYS straight and I just could not keep anything...ANYTHING...down. Initially I was in there "for observation" but then it turned in to something so much more. 

The Internal Medicine doctor that saw me that first morning (I was admitted at 12:30 am on Wednesday March 2nd) admitted that he knew nothing of my condition and would defer to GI that would see me later in the day, but he thought I would be going home. I had not eaten the food brought to me that morning, didn't eat that afternoon, and by evening didn't eat either. When GI came, he thought I needed an NG tube and wanted to do tests for auto immune diseases. 

The next morning I turned away food and was visited again by the same Internal Med doctor who thought the NG tube would not help, but said "but your condition is above my scope of knowledge." My thought...then don't give me your opinion on it. A couple of hours later the NG tube was placed. It took three tries to get it in. The first try resulted in a big wad of it coming out of my mouth. The second try resulted in it just hitting the back of my nose. The third try was a success. 

It was slow going at first, but eventually it began sucking stuff from my stomach. It's an odd feeling, to be honest, but the relief you get from it is better. The nurse I had said that the amount of stuff coming out wasn't the problem, but the color. It was an off-putting hue--I'll leave it at that. 

Fast forward a day and a new GI came in and he looked at new x-rays that had been taken of my belly. Potassium pills were just sitting in my stomach like two BFFs. He said I was "FOS" and had a big gas pocket in my stomach. Based on that and my other issues (POTS, migraines, peripheral neuropathy, vertigo) he thought I was having a complete neurological breakdown and needed to have TPN and go to UCLA for better help. 

The next morning I woke up, my nose leaking puss. I buzzed my favorite nurse, Lesly and said "Uh, I think we have a problem!" 

She goes "Oh. My. Gosh!" Runs and pages the doctor over and over. I was having a severe allergic reaction to the bandage holding the NG tube in. By the time he finally came we had to take it off because it was peeling off from puss leakage. 

The doctor decided to put me on iv Benadryl and ointment on my nose due to the reaction. And NO MORE TAPE!! 

About an hour later the CNA comes to take my vitals and it hurt. I look down and my left elbow is swollen. Two days before they had started another IV in my right arm because my left arm was swelling; however, the vein was too small so they kept the left arm open for medications like phenergan and potassium. Seemed like the vein was going, so I called Lesly. Again she says "Oh. My. Gosh!" And takes out the IV. 

Finally they decided to put a PICC (Peripherally Inserted Central Cathiter) line in and give me TPN. When you're on TPN you can't have anything other than ice chips and sips of water, so I was on the yellow bag and ice diet for 4-5 days. 

Then along came the THIRD GI and she thought this whole episode was IBS gone wrong. I had to have GoLitely pushed down my NG tube to clean out my bowels. I will say this:: if you HAVE to have that devil drink, having it through the NG tube it the way to do it. But I spent the evening and night shivering, crying, and in pain. She also gave me some shot that was supposed to make my bowels move--it didn't--and then she decided to try and get me to eat, so it was Apple juice down the NG and then Boost--that was HORRIBLE. But I ultimately was able to get the NG out, food down, the PICC out and then home. 

The directions I got going home were to consume 3-4 Ensure or Boost because it would put me close to 1,000 calories a day. If I could get in some soup too, great. I've been struggling to get in much of anything more than 1-2 Boost or Ensure and a little soup. I've lost more weight (I went into the hospital weighing 165 and now weigh 159) and have trouble with nearly passing out. But I'm trying to stay positive. 

My referral to UCLA went through, but I won't be seen until November. We're hoping that they'll get me in sooner due to the complexity of my condition, but who knows. I'm sure that's how most people feel about their conditions. On the upside, my nose is normal again!

(The progression of my nose. Top left is bandage on [duh]. Top right is when I realized I was reacting to it. Middle left is right after getting the bandage off. Middle right is a couple of days later. Bottom left is 3 days before I went home. Bottom right is the day I went home.)

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!

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!