I have been totally ging-ified for several years now, because, it turns out, ginger is one of my most effective medicines.

Since I have gastroparesis, one of my biggest and most debilitating symptoms is chronic nausea. And I do many different things to try and manage it (look to a future post for that one), but my absolute favorite is ginger.

Ginger. Ginger. Ginger. And more ginger.

Now, if you’re like “Oh, I’ve tried ginger ale and it doesn’t do much.” Well, odds are, you’re drinking the average mass marketed ginger ale, like Schwepps or Gosling, which means you’re actually not getting real ginger ale. You’re getting carbonated sugar water with artificial ginger taste. And sometimes carbonated sugar water can help, because of the bubbles, but you’re not getting the benefit of ginger.

Ginger is kind of a miracle plant. It has a lot of healing properties and, most importantly for spoonies with nausea, it aids digestion and soothes the stomach. So when you’re looking for something to really help your tummy aches, you want some real, honest-to-goodness ginger. And the best part is that, unlike most medicines, there are really no bad side effects to consuming ginger.

So now the question is, how do I get this ginger into my body? Well, after many years of trying just about every ginger product available in the continental U.S., I am here to share my favorite products!

Now, just a disclaimer. Not everyone likes the taste of ginger. I hated ginger before I got sick. So I had to “ease my way” into really strong ginger products. But the brain is a miraculous thing, and as the ginger started to make my stomach feel better, my brain associated it with good things, and I began to enjoy and even crave the taste. Now, for me, the stronger the ginger taste, the better.

For me, personally, ginger doesn’t “fix” a flare, but consuming it regularly throughout the day goes a long way to managing my symptoms. When I forget to have a lot of ginger products in a day, I notice. I actually have a friend with IBS who says she can eat almost anything she wants as long as she has a cup of ginger tea every day.

Which brings me to my first favorite ginger product:

1. Ginger Tea

Now, if you’re not a fan of the ginger taste, the good news is that there a lot of ginger blends. Just go to the tea aisle at your favorite grocery store and start browsing. You can find a tea that has ginger blended with lemon, apricot, or some other delicious sounding flavor to help balance the ginger kick. Of course, you’ll have better symptom management with straight ginger tea, and my personal favorite is Harney & Sons Ginger Tea.

I add a little bit of honey to this and it’s absolutely delicious and fantastically effective. The best thing about ginger tea is that, unlike most ginger products, it doesn’t contain any sugar (except for whatever you choose to add).  Plus, it’s easy to browse the tea aisle and see what strikes your fancy. I also happen to love Yogi tea, and they have a great ginger-lemon blend that is fantastic. I drink it straight without adding any sugar, milk, or honey.

2. Ginger Soda

Depending on your body, sometimes a carbonated soda is more effective to help your nausea, bloating, or cramping. The downside of that, however, is that it comes with a lot of sugar. I can tell you my teeth have suffered the consequences of this, so if you sip throughout the day like I do, I recommend using a straw.

I have two favorite sodas. The first, Reed’s Ginger Beer, can be found at most Whole Foods or other health food stores.

This soda has 26 grams of real ginger in it, so it’s very powerful, both in taste and effect. But if that’s a little too much ginger kick for you, they also have some delicious blend sodas that have very little ginger taste. My favorites are the Raspberry Ginger Brew and the Spiced Apple Ginger Brew. They only have 17g of ginger, so they’re less effective than the straight ginger beer, but they still have a lot more ginger than, say, a Canada Dry.

Update: Reed’s now makes a “Stronger Ginger Brew” that has 39g of ginger! It’s replaced Fever Tree as my “tonic” ginger beer.

My other favorite ginger beer is a recent discovery. It can be found at Total Wine, and more recently, in the organic section at Giant Grocery Store. I call this drink “my tonic” because I have it in the morning to help jump start my stomach for the day. It’s called Fever Tree Ginger Beer, and you can also order it on Amazon, although it’s a bit pricier that way.

Unfortunately, it is very sugary tasting, so I like to also have Reed’s throughout the day (even though they both have about the same sugar content, Reed’s doesn’t taste as sweet). They literally put twice the amount of sugar into the American version of Fever Tree than they do the British version, which is sad, because when I was able to try the British version, it actually tasted much better, and was, y’know, not as terrible for your teeth and health. But it relieves my bloating significantly, so it’s worth it to me. I’m looking into trying to make my own ginger beer in the near future, where I can control the sugar to ginger ratio more to my benefit, so I will report on that as well!

Bruce Cost also makes some delicious ginger brews, but be careful not to get the zero calorie/artificially sweetened kind, as those can exacerbate symptoms, which completely reverses the point of drinking it! The pomegranate blend is particularly scrumptious. Although I’ve had a hard time finding it in stores.

Fentiman’s also makes a strong ginger beer, but I personally can’t stand the taste.

Maybe you’ll like it, though!

3. Ginger Candies

These are great to carry with you on the go and munch throughout the day to manage your nausea. My favorites are The Ginger People’s Gin Gins.

I literally order these things by the case load. I probably go through a box every two days. Again, it has a lot of sugar that isn’t ideal, but it really, really helps. I now eat the original ginger flavor because I’ve found it’s the most effective for me, but I started on the apple-ginger flavor until I got used to the ginger. They’re usually available in any health/organic section of your grocery store, so you can try the different flavors and see what works best for you. But if you, like me, find a flavor you like and use them daily, your most economical option is probably to order them in bulk off of Swanson Vitamin’s (they always have coupons) or Abe’s Market.

I also like to balance out the harder candy texture with Reed’s Ginger Candies (yup, same company as my ginger beer!).

They’re a lot softer and chewier than the harder Gin Gins, so it’s just a matter of preference. I like having the option of both, and I find them both equally effective. If you like these, I find it most cost effective to order them in bulk off of Amazon.

I’ve also recently started using Ginger Tummy Drops, which are hard candies that you suck on. Although the act of chewing helps aid digestion, these are nice to suck on during those times that eating just seems impossible. They have a lot of bite, though, so I only recommend them for the expert gingerians.

Update: I also love the ginger cuts made by Nuts.Com.

Do you have any favorite ginger products that I’ve missed? Comment below! 

About the Author:

Leah is a 24 year old suburb-of-Philly native. She has Ehlers Danlos Syndrome – Hypermobility Type, Gastroparesis, Dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of.

The post Fighting Nausea with Ginger Products! appeared first on Spoon Shares.

It’s really hard to wear any sort of non-elastic pants with this issue. So I had been hard-core sweatpants-ing it everyday. Which was fine for hanging out around the house, but not so much if I wanted to go anywhere, well, normal.

Enter my hero: Jag Jeans Elastic Waist.

Once again, disclaimer. I’m not getting any endorsements from these people. I just really like them.

They look just like regular jeans, except they have a comfortable, elastic, belly bloating friendly waist band. No longer need to shop at the maternity store! They have multiple colors, styles, and you can order them off of Zappos. Free shipping, free returns, and no need to waste any spoons shopping at the store. Super spoonie friendly!

I now have two pairs of pants and one pair of shorts. It’s honestly a relief to have something that makes me look like I’m wearing normal pants without strangling my sporadically distended belly into the standard waistline.

What are your favorite bloat-friendly pants?

About the Author:

Leah is a 24 year old suburb-of-Philly native. She has gastroparesis, dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of, and a contributor to the new podcast Media Matters.   

The post Bloating Tip: Jag Jeans! appeared first on Spoon Shares.

He’s my gastric neurostimulator. He lives inside of me.

No, he does not turn me into a wifi hotspot, much to my chagrin.

But he does something much better. He helps treat the nausea and vomiting symptoms I experience as a result of my gastroparesis. This small device sends small electrical pulses that are intended to dull the nerves related to nausea.

I often see posts on social media sites from people who are considering the gastric neurostimulator and are desperately seeking advice from people who have had it implanted. Hell, I used to be one of those people.

So here is what I would like to say to each person considering the pacemaker, framed as a Q&A.

Has it helped you?

Yes. Before I had my surgery I would vomit 1-3x a day. More, if I was in a symptom flare. Now, thanks to the stim, I only vomit when I’m in a symptom flare. The difference between vomiting multiple times daily versus only a few times a month? Huge. Amazing. Miraculous. Thank you, Jarvis.

That being said, I still experience daily nausea. I have a lot of trouble eating orally and I have a feeding tube.  The stim is a symptom management tool — for me, one of my most important ones. Unfortunately, though, it’s not a cure.

Does the stim help in all cases?

No. It varies from person to person in how drastically it improves symptoms, if it improves symptoms at all, which is not a guarantee. The device is relatively new and is still being studied.

I will say, personally, that I know about eight people who have had the stimulator. Seven have seen improvement and one had it removed because it wasn’t helping,

I feel it is important to remember that while the stim does involve major surgery, it is still a completely reversible procedure.

Is it a pacemaker or a neurostimulator? I’m so confused! 

It is technically not a pacemaker as it does not “pace” the stomach the way a cardiac pacemaker paces the heart, although it is often referred to as a pacemaker. So if you see a person online referring to their “gastric pacemaker,” they’re talking about the stim!

They did, at one point, try an actual pacemaker with stomachs and, unfortunately, it has not worked. However, the neurostimulator is often referred to as a pacemaker, and if you have to tell a security officer why you can’t go through the metal detector, just tell them you have a “pacemaker” for convenience. It amounts to the same thing for them.

What maintenance is involved? 

My daily life isn’t impacted by the stim, except for the symptom relief! The stim doesn’t require daily care, but it can be adjusted every three to six months, depending on what your physician feels is needed. There are many different settings (you can change the rate and intensity of the electrical pulses), and there are absolutely no studies determining which is the ideal setting for any given person. So it’s a lot of trial and error, figuring out which setting works best for you. The right setting can improve symptoms, the wrong setting can make symptoms worse.

There are also certain medical tests you can no longer do once you have the stim, most notably the MRI. You can still have X-Rays, CT scans, etc. There are a few tests you’d need the stim turned off for, and if you have a surgical procedure, you’ll also need the stim turned off as well. This can be a serious pain in terms of making sure you have an Enterra (the company that makes the stim) representative present when you most need it, but I’ll elaborate on that more in a future post. Fun story: it involves the company threatening to arrest my mom. But back to logistics.

I do have to be careful around electric devices. For instance, I always put my phone in my left pocket, away from my battery. It’s a slim chance that this could cause my stim to turn off, but the manual told me to keep all electric devices three inches away from the battery, so I try and obey it. But I’m pretty sure it would take something much more powerful to affect the battery.

If you get the stim, you’ll also receive a manual detailing all the cans and can’ts of having the stim. There’s also one online.

I do also occasionally set off metal detectors at stores…that’s always fun to explain. “Move along, it’s just my cyborg parts.”

With the stim, you are not allowed to go through metal detectors. I haven’t had any problems with this. You just tell the security guard that you have a pacemaker and they usually let you right through. Sometimes they’ll do a quick pat down. If, for whatever reason, they need proof, Medtronic supplies you with a card detailing the information of your pacemaker and the number to call if the security guard has any questions.

I call it my “License to be Groped.”

Airports can be a little more complicated. You can’t go through the metal detectors, and if they don’t have one of the newer, non magnetic scanners, then you’ll need to get a pat down. This usually isn’t too much of a problem, albeit a bit of a nuisance, except there have been a few incidents online of people missing their flight because TSA couldn’t get an agent of the same gender to perform the pat down. It didn’t matter that the person was willing to have a pat down by a member of the opposite gender; the TSA’s policy doesn’t allow that.  So if you aren’t sure that the airports you’re traveling through have the new scanners, then you should allow extra time before your flight, just in case.  Or, if you’re a frequent flyer, consider getting a TSA pre-check. It will save you a lot of hassle in the long run.

How was the surgery?

I mean, it was major surgery. So not that fun. But not as bad as a lot of other reasons you could be in the hospital.

I was in the hospital for three days, which is usually the minimum stay for this procedure. I was on Dilaudid for the majority of the hospital stay, which is always fun…

I was switched to Percocet when I returned home. The catch with these drugs is that they slow the GI system (big problem for someone who has need of a gastric neurostimulator), so if your stomach doesn’t tolerate pain killers, then you might have a harder time with pain management. However, I had my surgery done via laparotomy (open surgery). Many surgeons now do the implant laparoscopically, which involves a lot less pain afterwards.

The intense part of the surgical pain lasted for about a week and a half.  I couldn’t even shower when I first got home. After that it dulled significantly, but I was still a little sore for a couple of weeks. You’ll be told to avoid physical activity (including heavy lifting) for 6 weeks, so that the battery pack can settle in completely.

Have you experienced any complications?

I haven’t experienced any serious problems, although I do know someone who had an infection. It was cleared up with antibiotics.

I have experienced painful muscle spasms caused by electrical arching from the stim (or, at least, that’s the theory), but it is managed by occasional acupuncture. I also regularly carry tramadol, in case it decides to randomly act up. I rarely need it, but it is a serious problem when it happens. From what I’ve gathered online, I am not the only one who experiences this problem, but it’s not an altogether common reaction.

But I’ll blog more on that topic another time.

What physicians did you use?

I used Dr. Henry Parkman at Temple University, who’s considered one of the most authoritative physicians on gastroparesis in the country.

I consider him one of the most incompetent eggheads in the country.

Seriously, I have no qualms stating this publicly on the internet. This man isn’t just rude and uncaring — I could deal with that. He is actually incompetent, unhelpful, and potentially harmful to your health. I’d list the reasons why, but this post is already bordering on novel length.

I’ll just leave you with this story. My father’s friend went to him in search of the stim, and during the 10 minute appointment, Parkman fell asleep and farted twice.

I think that pretty much accurately summarizes any encounter you could have with this man. If you can walk away with one recommendation from this post, it would be to not use him as your physician.

Luckily, the surgeon I used (who I did like), Dr. Sean Harbison, is no longer at Temple. He’s now at University of Pennsylvania Hospital, and is one of the surgeons who helped developed the stim (along with Parkman, in I assume his more lucid days). He’s a skilled surgeon and did an excellent job on my stim, but he is one of those doctors who will tell you everything you want to hear in the office and then completely ignore you once you walk out the door.

For stim adjustments, I now actually travel to Dr. Frederick Brody at George Washington University Hospital. He’s knowledgable, receptive, and thorough. I also had wonderful experiences with his fellow, Dr. Laird. For me, it’s worth the trip just to have a reliable doctor handling my adjustments.

Can you see it? Can you feel it? 

I’m a bit thin, so it does protrude ever so slightly. But it’s barely noticeable. If I touch it, it definitely feels harder than any other part of my body. But I can’t feel any sensations from it inside of my body. If you have a stim and you can feel the electric pulses, then you need to contact a doctor right away.

Because I am small waisted, it can be uncomfortable if I am lying in a specific position, but with a simple shift or adjustment then it’s back to being ignored!

Would you do it again?

A hundred times over. Yes, it’s a pain and it’d be easier to live without it, but it gave me my life back.

If you have any more questions, you can leave a comment,  email me, or ask me on twitter or tumblr!

About the Author:

Leah is a 24 years old suburb-of-Philly native. She has gastroparesis, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of, and a contributor to the new podcast Media Matters.   

The post My Gastric Neurostimulator appeared first on Spoon Shares.

Did you know that our culture basically revolves around food? It’s actually pretty insane. You don’t realize the full extent of this until eating or finding food to eat becomes problematic.

We have luckily become more aware of certain disorders that require dietary restrictions, such as celiac disease or diabetes, but a lot of chronic illnesses come with dietary restrictions that don’t have their own separate menu. And, even with the new awareness of the more “mainstream” dietary disorders, it can still be a challenge to find food in many restaurants.

I have gastroparesis, so my dietary restrictions are pretty insane. I can’t have (sped up) fatty foods, fibrous foods, food that cause bezoars, skins, seeds, nuts, anything with indigestible parts such as broccoli and cauliflower, hydrogenated oils, aspartame, fake fiber, caffeine, high fructose corn syrup or alcohol.

My friends call me The Waiter’s Terror.

So a couple of tips I’ve learned for eating with intense dietary restrictions.

Pack Your Own Food.

I always pack a few staples in my bag wherever I go, in case I can’t find food where I am. I like beef jerky sticks and baby food purees. Other staples I’ve used in the past are luna bars, meal replacement drinks, graham crackers, but now I try to opt for something a little more nutrient dense. But basically you just need packable food that won’t go bad and won’t make you sick or symptomatic.

And yes, your bag will be comically large.

(dumps large bag)

2) Ask to talk to the Chef

Especially if you have really complicated dietary requirements, going to the source of your food is often the best. Besides getting real answers about how the food is prepared instead of the waiter guessing, you’ll get a clear idea of how receptive the chef is to modifying the food for you before you commit to an order.

I printed out restaurant cards but haven’t found them useful as of yet.

Be sure to use the phrase “it will make me sick.” Otherwise they might think you’re just on a new fad diet and they might blow you off and tell you what you want to hear. The thought of a customer puking in their bathroom tends to motivate them to fess up about their real ingredients.

If you’re at a chain restaurant, ask to see dietary information because they almost all provide that now. But, the flip side of that is that if that information is provided, it probably means it is highly processed foods that come out of a plastic bag. Might not be the best food for you and you might wanna rethink eating there.

Which you can totally do! Because tip #3 is…

3) Don’t Eat the Restaurant Food

That seems kind of counter productive. But if you think about the enjoyment factor you get out of eating at a restaurant it’s not just eating the food. It’s also the atmosphere and, generally, the company you’re eating with. The way I approach eating out with friends is, unless I have a specific place that I know has food for me that I ask people to go to with me, I eat an hour or two before I go out. If I find something I can eat at the restaurant, great! I’ll order it, eat a little, and save the rest for leftovers. If I don’t, I’ll either pull out one of my snacks — and if the waiter gives me a hard time…(squeezes apple pouch). Actually you just explain your situation, usually they’re pretty receptive. If they start to give you a hassle, if you throw in the phrase “American with Disabilities Act,” they usually just do what you ask. It’s one of the magical phrases, like “it will make me sick.” One other thing that they fear besides cleaning up puke? Cleaning up a lawsuit!

Sometimes, though, when friends want to go someplace I know I won’t have anything to eat, like McDonalds, or I don’t feel safe “risking it” that day because I’m symptomatic, I plan specifically not to eat at the restaurant.  This sounds depressing but it’s really all about the mindset. You’re not there for the food, you’re there to hang with your friends, family, or significant other, whoever. It might feel strange at first, which is why it’s probably good to pack a snack just so you can feel like you’re eating with them, but after the first two times it will start to feel natural.

Assure your friends that it doesn’t bother you and that you are enjoying yourself as well. Also make sure they understand not to tempt you with the “just one bite” thing.

“C’mon, just one bite won’t hurt, will it?”

Yeah, it will.

This is about them wanting you to be happy with the situation, too, so just explain that you’re much happier without risking the extra symptoms and enjoying spending time with them. Be open and honest with your friends so they understand your mindset and know best how to accommodate your needs, because everyone is different in how they want to be treated in situations like this. So…throw them a bone! Help them help you.

You will get weird looks from the waiters, but that’s something you can laugh about. My friends and I always look forward to the “oh, she’s anorexic” look. We relish it.

Because in these situations you gotta laugh or cry, and as Kurt Vonnegut says, “I prefer to laugh because there’s less cleaning up afterwards.” 

Tell me your own tips for dining out with dietary restrictions in comments and check out more tips for people with chronic illnesses on spoonshares.com. Sending spoons and love, take care!

About the Author:

Leah is a 24 years old suburb-of-Philly native. She has gastroparesis, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of, and a contributor to the new podcast Media Matters.   

The post Dining out with Dietary Restrictions appeared first on Spoon Shares.

It wasn’t on purpose, mind you. Not like we all smoked a big bag of dope before the ceremony.

Although tequila shots were had by some. Not me — I can’t drink alcohol. 

But I was on a pill called tramadol for the first time and it had an…inconvenient effect on me.

You see, a week before said wedding I started having severe spasms of pain in my right side, presumably caused by my gastric pacemaker. It happens every so often, and usually my acupuncturist makes it go away. But, because the GP Gods had an extra special sense of humor that week, my acupuncturist happened to be out of town.

So I frantically called my doctor saying, “I have to be able to stand upright, in heels, and have a radiant ‘so happy for you smile’ plastered on my face all day for the pictures HELP!!!”

He prescribes a pain pill called tramadol, and says I can take one pill every four to six hours. If that doesn’t do the trick, I can take two — but be careful, because it can have a mildly narcotic effect.

You see where this is going.

So the day before the wedding I take two pills just to make sure nothing bad would happen, and I was a little fuzzy, but the pain was much more bearable.

So I wake up the day of the wedding in a house where I’m staying with the bride and the other bridesmaids, and decide…f%#$ it. I want to have fun dancing and not worry about the pain. So I take two again.

Funny thing, though, about my illness. I have gastroparesis, which means that I digest things differently on any given day. I also hadn’t eaten anything in about two days because it made the pain worse, and I was trying my best to be a helpful bridesmaid instead of a burden. Meaning I was taking these pills on a completely empty stomach.

So about an hour after I take the two pills, I’m searching for my Bengay patch and can’t find it. Then I realize that I’ve been staring at the same patch on the carpet for about five minutes. And I think….well, that’s not good. And I suddenly feel like there is a veil between me and the rest of the world that I can’t reach through to focus on any given thing.

My mom calls me. She’s driving to the ceremony but needs directions. “Uh, you just go— the beach is like, it’s Lot 34 I think? and the one road…”

“Leah, what is wrong with you?”

“I’m not, it’s the one road — I’m high Mommy, I’m so high.”

Laughter screeches out of the other end of the phone. “Took two, did we?”

“…how do I make it stop!?”

“You just gotta ride it out, sweetie,” she says.

So I walk up to one of my best friends, who was the maid of honor, and say “Kayla. I’m just letting you know…I’m really high right now.”

Now, Kayla just graduated nursing school and I had told her that I was taking these pills. This still didn’t stop her from looking at me incredulously and saying, “Why would you smoke right now?”

“No, Kayla, the pills!”

“Ohhhh…oh! Oh.”

“Yeah just…make sure I don’t do anything stupid.”

Flash forward to the bride getting ready. An absurd amount of people were gathered in one room watching the bride and the bridesmaids get ready. A professional photographer was documenting the whole process. Another friend who was doing the bride’s makeup was delegating me with instructions on how to cover her back psoriasis. This was a three step process which was well beyond my powers of comprehension at this point.

“Katie,” I said, “I really can’t handle a job right now.”

Katie stares at me quizzically and I immediately feel the shame of being an incompetent bridesmaid. “I-I can do it. Totally. Just give me the makeup.”

“Girls, you should really get your dresses on!” 

So we all gather in the side room where the door is slightly ajar (due to the curling iron snaking through the door into the nearby outlet). I grab my dress, pull it on, zip it up….and it falls right down to my waist.

Holy crap monkeys. After not eating for two days I must have dropped like twenty pounds and my doctor is gonna kill me and put me on a feeding tube and my dress won’t stay up and I’ll have to wear a trash bag in the photos but maybe I can use duct tape do we have any duct tape?!

It’s also important to note that, of the entire bridal party, I am the only one without a bonafide, medically-diagnosed anxiety condition. And I was the one having a full on panic attack.

Whoops.

One of the other bridesmaids touches my shoulder. “Leah, you’re wearing my dress.”

Oh. Ok. We’re good then.

At this point the mother of the groom bursts in to give us a time update, then leaves without shutting the door. The other bridesmaids shout for her to come back and close it, but I just roll my eyes and go “I’ll do it.”

My friends would later tell me that they all held their arms out and made a noise, similar to when you see a car crash about to happen.

Because I had completely forgotten that my friend’s strapless dress was still hanging around my waist, leaving me completely topless.

Once again, I must remind you there was a professional photographer in the other room. As I closed the door, I saw lights flashing. So I’m fairly certain that somewhere there is a professional photograph with my bare breasts photobombing in the background. Photoboobed. 

I get the right dress on and help the bride put hers on. Now it’s time for the three step psoriasis-covering back makeup. But somehow I only have one makeup container in my hand now…guess that will have to do. I try to open it and I try to open it again and it won’t open what is happening?!

My friend turns the makeup container around. I was trying to open the hinge. After I still can’t manage to open the container, despite it now facing the correct way, she takes it from me and finishes the job herself.

The bride is dressed and lovely, and we were all emotional — whether it was the drugs or if I was just happy for my friend? The world may never know.

But suddenly I remembered. My escort down the aisle is the groom’s autistic brother. Didn’t worry me a bit when it was assigned, but now that I can’t even manage to open a makeup container correctly, I’m suddenly panicking that I’ll do something that will trigger him, like grab his arm too tightly, and his senses will overload, and he’ll have a fit in the middle of the wedding, and it will be all my fault.

Once again, helpful bridesmaid having a panic attack. But it turns out I needn’t have worried — my escort was drugged too. We made quite the pair.

Luckily the actual ceremony was outside and on the beach — so I didn’t have to navigate walking in heels down the aisle while stoned off my ass — and the ceremony went smoothly and beautifully. I felt exuberantly thrilled with my success. Many hugs were had and lovely (fully clothed) photographs were taken.

“I made it!” I thought. “I’m in the clear! Except for a few friends and a professional photographer or two, I didn’t horribly embarrass myself in front of an entire wedding party.”

That is, until the reception.

The DJ announced everyone in the bridal party as pairs, and we decided we’d all do cute poses when we entered. Not wanting to make it too difficult for my escort, we decided I’d do a cute little curtsy to him, and have him bow to me. We taught him how, and decided that if he didn’t actually do it when we were called, then it’d still look cute with me curtsying to him.

At this point I’ve mistakenly come to the conclusion that I have completely sobered up and will have no problems whatosever. I also forget that I now have rather high heels on.

Once again, you see where this is going.

They announce our names, the groom’s brother and I walk out, I go to curtsy…and fall all over myself. I don’t do a full face plant. I think that would have been far more graceful. My foot slides back, loses traction, and I wildly wobble about, futilely attempting to resist gravity’s diabolic pull. Limbs fly all over the place. My face contorts into bizarre shapes I thought only possible on a Pixel Paint program.  I finally land on my feet and place my arms awkwardly on my waist in a cartoonish “I meant to do that” sort of matter.

Next to me, the groom’s brother bows perfectly.

I shake my head at myself. Haven’t I learned? Never underestimate a fellow spoonie.

And, in the case of a wedding, maybe stick with the lower dose next time.

About the Author:

Leah is a 24 years old suburb-of-Philly native. She has gastroparesis, dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of, and a contributor to the new podcast Media Matters.   

The post Boobbombs and Faceplants: My Adventures with Tramadol at my Friend’s Wedding appeared first on Spoon Shares.

You’ve been diagnosed with gastroparesis? Hey, me too!

I was diagnosed with gastroparesis about three years ago, and I’m going to give you what I believe to be the top five pieces of advice you can hear at this moment.

I’m not going to give you the basics of the disease because you can find that on mayoclinic.com, which I recommend if you want a basic rundown of almost any disease.

Being diagnosed with gastroparesis can be super scary because you’re given almost no information whatsoever when you’re first diagnosed. You’re basically told, “Well, you should modify your diet to control your symptoms, but you will most likely have this forever. Good day!” 

So you go on the message boards of death and despair and hear all about how awful this disease is and you break down in a ball crying because you think that your life is over. Which brings me to Tip #1: 

Tip 1) Get off the message boards.

They are scary, scary places and not helpful to you at this moment. Your life is not over, but the message boards will often make you think that it is. 

You can always go back to them later, when you have a better handle on your situation.

Tip 2) Get some reliable information.

Unfortunately, that’s hard to find with gastroparesis. The best recommendation I can give is to go to livingwithgastroparesis.com. It’s a website by GP nutritionist Crystal Saltrelli designed to teach people how to live well with gastroparesis. She has this wonderful, calming video on the front page that basically says “Welcome to the place of non histrionic solutions.” When I first saw it, I almost cried in relief. She has amazing resources, including a free Quick Start guide that basically serves as the pamphlet your doctor never gave you. She also has two books which I highly recommend: one on eating for gastroparesis and one on living with gastroparesis — I have them on ebook, which is nice because I can quickly reference them on my smartphone. She also teaches online classes and runs incredibly informative group programs. These can be a bit more expensive but, in my opinion, they are worth every penny. She’ll work with you on a payment plan if necessary.

Sorry this just turned into a giant advertisement for Crystal Saltrelli, but she just runs a really good outfit. She’s like the Yoda of GP.

A lot of the information and philosophies I’ll share on this website come from things I learned from her. So check her out!

Tip 3) Get a great support team.

Having this disorder is difficult. You can’t do this on your own, however much you want to believe and delude yourself that you can.

You need people who can support you physically, medically, and emotionally. They will be your sanity.

I currently live with my amazing parents, and my mom helps me with a lot of daily things I find too physically difficult. Remember that this is hard for your loved ones as well, so show your appreciation whenever possible.

If you don’t have anyone to help you logistically, you can get home health care assistance through most insurances.

Emotional support most often comes in the form of family and friends, so be careful not to lose touch. Put the effort into maintaining those relationships — they have things going on, too.  Sometimes it’s helpful to find a literal support group of people who are in a similar situation. In this amazing interconnected age, you can usually find one online. I found one, almost by accident, and it was one of the best things I ever did (shout out to my gp sisters!).  Many people really find therapy helpful. The brain and the gut are inextricably connected (seriously, read up on that because it’s pretty fascinating), and one can exacerbate the other. So take care of your brain. 

Finding the right doctor is also so, so important. I can’t emphasize that enough. I often tell people that finding the right doctor is like dating, most of the time you have to shop around until you find the right one for you. Don’t settle for a doctor who won’t listen to you, or even believe what you’re saying.

You know your body best and it’s vital at this juncture in your life that you become your own best advocate.

If you’re having financial struggles with these insane bills, finding some form of social advocate will help relieve that enormous burden.

Tip 4) Do some a lot of dietary research.

It has never been more important to watch what you put in your body and understand how your body digests. It astounds me how profoundly our bodies can be affected by what food we put into it. I personally wouldn’t recommend a dietitian because they never seem to agree on one philosophy, they rarely know about gastroparesis, and it’s really hard to find one who isn’t just trying to sell you their powders. I think your time and money is better spent reading on lots of different ideas surrounding nutrition so that you can choose the method that makes the most sense to you.

And finally, but possibly most importantly…

Tip 5) Have patience with yourself.

This is not a battle because it is not something you can win or beat. It is a constant negotiation with your new body.

Gastroparesis is not a progressive condition — however it is important to note that symptoms can get worse if you begin to suffer from malnutrition — but it is also not a constant condition. It ebbs and flows with the tides. You might feel great one day and horrible the next, and it’s very hard to predict what your symptoms will be day to day. This can be horribly frustrating, as it means that things you plan and look forward to often don’t work out. Plan for this accordingly. I advise telling people when you make plans that there is a chance you could cancel depending on your symptoms.

It’s important at these times, when you feel you’ve let yourself down, that you recognize that you are not crazy, you are not a wimp, and it is not all in your head. I know these thoughts because I have had these thoughts. Gastroparesis is a very serious but invisible medical condition that can rear its ugly head at any moment. The most important thing you can do is take care of your body, because if you try and ignore your symptoms you’ll just get worse and worse. I speak from experience.

I’ll close this list with my favorite corny platitude that helps me get through the days where I wasn’t able to do the things I wanted or intended.

“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying ‘I will try again tomorrow.'”

About the Author:

Leah is a 24 years old suburb-of-Philly native. She has gastroparesis, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of, and a contributor to the new podcast Media Matters.   

The post Top 5 Pieces of Advice for Newly Diagnosed Gastroparesis Patients appeared first on Spoon Shares.