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Hey, it’s Leah of Spoon Shares. I started a vlog series about feeding tubes about 2 years ago, and did about 4 videos over 6 months before I stopped because…I didn’t have the energy and I kept putting it off. So now it’s two years later, and I’ve somehow still gotten some really nice comments and subscribers, despite the fact that I haven’t posted in two years, so I’m going to make an effort to start these videos again. I no longer have a feeding tube, I had to switch to TPN, which is IV nutrition through a central line, but I will still talk about my experiences with the feeding tube as well as TPN. And I’ll talk about other chronic illness related stuff, either stuff I’ve learned living as a professional patient that I think may benefit someone to hear, or stuff to help you explain a difficult concept to friends or family members. I’m not going to try and do one a week like I tried last time, because I know better now. But I will do what I can. And that I think brings me to the topic of this video, which seems a good place to re-boot this vlog series: productivity.

Productivity with chronic illness is hard. No matter what level of functionality you have, you know it’s not as high as it would be if you weren’t sick. And that’s really frustrating. And because our society is so productivity based (think of how often we hear the phrase “productive member of society”) it can feel like you’re a useless drain on the resources of those around you.

So in order to cope with that feeling of doing less than you would like to do, whether it’s because you need more days off or because you can only work part time, or because, like me, you can’t work at all, you have to throw out that “productive member of society” narrative from your world completely. Just chuck it out the moon door along with Lysa Arran (spoilers). 

Instead, think about the people you value in your life. Your friends, your family, your significant other, your furry pets. Now, do you value them because of what they do and what they create, or because of who they are? Creating stuff is awesome, don’t get me wrong, and part of the reason I knit so much (I knit a lot guys) is to feel like I am adding things tangibly to my world. Also because it’s a great way to cope with symptoms while stuck in bed. But it doesn’t define your worth as a person.

So go easy on yourself, and remind yourself that you’re living in a body that makes even the most simple tasks feel Herculean. And when you’re beating yourself up for not being able to do something because of symptoms, remember this sentence a friend said to me when I had a migraine flare when trying to get ready for a friend’s wedding: “You will do what you can do, and whatever that looks like will be okay.”

The post Vlog: When Chronic Illness Gets in the Way of Productivity appeared first on Spoon Shares.

Happy Holidays, everyone! My bi-religious family, as my cousin deemed us, celebrated a wonderful Christmas Day yesterday and look forward to a lovely Hanukkah with my family this weekend. I hope you and your loved ones have a merry celebration of whatever holidays you celebrate this time of year.

Once the holidays are over, though, a lot of us feel incredibly anxious about what will be coming in the new year, myself very much included. In my personal, anecdotal experience, a lot of spoonies seem to be pretty Type A. We like to have plans in place to try and fix the thing we’re upset about. We research new treatments and try new doctors and ask people in message boards for advice. So when we’re worried for ourselves or our loved ones, or our country in general, we want to do something. We want to march and protest and speak for what’s right.

It’s hard to do that when speaking too long leaves you winded, and being out of bed for more than a few hours a day makes you sick. It can be frustrating to think that we’re so limited in our ability to fight against what we believe is so wrong.

That’s the reality of any group of disenfranchised people. It’s harder to speak out than it is for other people. That’s how they stay disenfranchised.

But it’s becoming easier to make our voices heard now, thanks to the internet.

Say what you will about Hashtag Activism or social media do-gooding. Maybe it feels performative, but it can get results. The ALS Ice Bucket Challenge raised $115 million dollars and led to a 30% increase in support of the ALSA. Since that time, 15,000 patients have been helped by ALSA chapters per year and 3 new genetic breakthroughs have been made using the research funding.

Hashtag movements are harder to quantify as easily, but I would posit there is a direct line from the start of #YesAllWomen to new wave feminism, as well as #BlackLivesMatter to a broader understanding and discussion of police brutality. Those movements didn’t start and will not end with these hashtags, but they were rallying cries to galvanize supporters and provoke deeper thought. A leader’s voice cannot be heard without a mass of people elevating them. As spoonies with limited resources, we can be part of that mass. And we can do it from the confines of our bedrooms.

Yes, purely performative allyship — for instance, when a white person posts about how they were nice to a minority or veteran on social media just so they can get accolades — is empty, reductive, and even harmful. So we have to make sure that our job, as people with privilege, as people who want to be allies, is not necessarily for us to speak, but to tap others on the shoulder and say, “Listen.”

So how do we stand behind the movements we support when we can’t go beyond the reach of our heating pad’s electric chord? Here’s a quick guide to get you started.

1.) If you have not already, create a twitter account. But don’t be an egg! Upload a profile picture, create a bio, follow people you’re interested in, and make it as personal as you’re comfortable making it. But don’t put up any private information you don’t want the very public internet to know. Now, start tweeting! It doesn’t have to be a masterpiece. Write something you’re thinking about. Maybe you saw a movie you really liked, or you read a really great blog (no pressure, but I am right here). Engage with other people, and have fun! There’s an amazing network of spoonies on twitter, and a network of just about any interest you might have (I have a twitter account just for my Disney obsession). It’s fun to find your personal Land of Misfit Toys. Just have a little patience while you get the lay of the land. You won’t get followers right away, and you won’t find your niche right away. Consistent tweeting is the key to gaining followers (hard for us spoonies, I know, that’s why my follower count isn’t that high), but you don’t need a massive audience to make an impact. Although, fellow spoonies are almost always good for a follow back!

Remember to ignore the trolls. It does you no good to engage with them.

2.) Follow people who write about the causes you’re interested in. Not only is following people the easiest way to get followers yourself, it’s also how you’re going to become informed about the actions you can take. Re-tweeting the things people write that resonate with you can leave an impression on your own followers who might be following you because of different shared interests, or because they’re your friends or family in real life. And, again, high numbers of “retweets” and “favorites” on a tweet send a message of support, as well as increases the likelihood that it gets mentioned in a news article. On the other end of things, people you follow will probably retweet things that they like, which will help you to find more people that you like. Cool cycle, right? In case you want help getting started, here’s a list of a few of my favorite people to follow on twitter:
George Takei – Yes, that George Takei. He participates in a lot of activism, especially on twitter, and he’s a really impressive and succinct writer.
Emily Ladau– Disability activist writer
Amadi Talks – Recent favorite who tweets about racism, homophobia, ableism, etc.
Anne Theriault – Feminist media blogger
Ijeoma Uluo – Social justice writer and editor of The Establishment
Shaun King – Social justice writer for New York Daily News
Travon Free – For some levity in your socially aware tweets, comedian and former Daily Show Writer
Lin-Manuel Miranda– He’s just a joy to follow on twitter. I highly recommend for when you need a pick-me-up.

In general, though, if you just search a keyword or a hashtag you’re interested in, you can find some good stuff pretty quickly.

I also recommend following organizations you support, for instance the ACLU, National Resources Defense Council, Planned Parenthood, National Disability Rights Network, etc, because they will post more specific calls to action. You can also do this on Facebook by liking their pages. Facebook can also be a great tool for sharing content, although it can be even more of an echo chamber than Twitter. Regardless, it’s still a way to share information and show support, and a way to read Dan Rather’s eloquent posts.

Most prolific “tweeters” have blogs, so if you find someone who resonates with you, you can read their articles, and possibly learn more about how to help. For instance, they can alert you when there’s a harmful measure going through congress or a harmful candidate about to be appointed. That’s when you….

3) Write and call your congressmen.

Trying to change minds and supporting the voices that are traditionally unheard is so important, but it is only the first step. The next step is to turn it into legislative action and pressure our representatives to support us. A lot of groups, like ACLU and NCJW (National Council of Jewish Women) have petitions ready to sign and automatically send to congress. This is simply a matter of filling out your name and pressing “submit.” So it’s the easiest to do on a day you have no spoons and/or debilitating brain fog.

However, it is even more effective, if you’re really feeling your zofran that day, to write or call your congressmen personally. It doesn’t have to be a speech that could be inserted into the last ten minutes of a movie, it just has to express your viewpoint. Phone calls can be most effective because there’s not an option to “not open” like there is with an email or a letter. Making a phone call can be way scarier than writing a letter or an email, but even if you babble like an idiot (which I usually do), it just gets marked down as a glorified check mark in the “for” or “against” column, so your representative knows what the constituents who re-elect them want. That’s the beauty of our vote. Even if representatives rely and cater to lobby groups and Super PACs for re-election money, that’s all useless if their constituents don’t want to vote for them. If we are vocal enough, we can pressure them into doing the right thing for the sake of their own job security.

Here’s the link to finding your House Representative, here’s the contact info for your senate members, and you can find your local officials by googling “elected officials” and your zip code.

4) Vote with your dollars.

This doesn’t just refer to donating to the charities you support or the politicians who speak for civil rights, although that is important. However, not everyone has enough disposable income for that. We do get to choose what businesses we patronize, though. If you want to see more women, people of color, disabled, and LGBTQ representation in movies and television, go see movies that have that representation opening weekend. Watch those TV shows when they air, or DVR them if you are able, and support them on social media. Refuse to see movies that white wash, like The Great Wall, or misrepresent disabilities like Me Before You. Support businesses that actively block their ads from generating revenue for bigoted sites like Breitbart News. That list can be found by following the twitter account Sleeping Giants. You can easily participate as a Sleeping Giant yourself, all it takes is a few tweets and a screenshot!

THE SG UPDATED CONFIRMED LIST: https://t.co/4TYRUOj9sv
THE SG FAQ: https://t.co/wfSUQBjOgj
REMOVE ADS YOURSELF: https://t.co/V4V8qWyyv3 pic.twitter.com/JszlNFryKY

— Sleeping Giants (@slpng_giants) December 16, 2016

Research the companies that you most regularly patronize (simple google search should do it), and, when you have the option, choose the ones that support equality and avoid the ones that don’t. We may have less buying power than corporations or Super PACS, but, again, this is a numbers game, and we exercise the power we do have. Just like a politician needs everyone’s individual vote, companies need a mass of people spending their individual dollars.

5) Have discussions that challenge others and yourself.

We’ve all had discussions that change our views, although it usually doesn’t happen in the moment. It takes time to resonate and make us reconsider previously held beliefs or assumptions. When you learn things from people speaking out in their blogs or social media, you can then verbally express those ideas with the people around you who wouldn’t otherwise have encountered them. They may do the same thing for you. Remember to be respectful and open in your discussions, otherwise the conversation will turn into a bickering contest whose only achievement is making both parties feel angry and frustrated. At the same time, we must stand firm against intolerance and disrespect. Keep learning. Keep questioning. Keep talking. That is how we make progress.

I’ll end this post with a mantra my aunt gave me: “I can not always lead the charge, but I will always be standing behind you.”

P.S. If you follow me on twitter @spoonshares, I will definitely follow you back.

The post How to Be an Activist or an Ally When You Can’t Get Out of Bed appeared first on Spoon Shares.

I have a mission for you.

It’s happened. Donald Trump is our president-elect, there will be a Republican majority in the House and Senate and an open vacancy in the Supreme Court.

Our health care is at risk.

If you’re like me, you’ve spent the last two years hearing Republicans promise to “repeal ObamaCare Day One” with a churning stomach. Not that churning stomachs are out of the norm for a lot of us. We’re the chronically ill, and nausea is often a part of the package deal. But this was a different sort of nausea.

This was fear.

Fear that the items in this new law that literally save our lives —  the pre-existing condition clause, the ban on lifetime and annual caps, the requirements for increased mental health coverage, etc — will be whisked away in a cloud of partisan dust in the political tug of war that often feels like it’s more about one team winning and less about the lives they represent.

I can honestly understand how that happens. When there are people whose job it is to literally “whip” congressmen into the party line (who consequently control their funding), it’s easier to remember the demands of your colleagues than the demands of your constituents.

So if we want the parts of the Affordable Care Act (which is the same thing as ObamaCare, in case anyone was confused about that, further referred to in this article as “ACA”) that are so vital to our continued prosperity and livelihoods to remain intact, we have to make it personal. We have to tell our stories and help our representatives understand the real consequences if they fail to replace the ACA with a substantive measure that protects its disabled citizens.

I’ll go first.

I was a perfectly healthy woman until I wasn’t. I was studying my area of passion, Dramatic Literature, at a wonderful university, and I was still in the “what do I want to be when I grow up” phase of my life when, while studying abroad at the age of 21, I got sick. And I didn’t get better. I took a semester off, thinking it would take at most a month to figure out what was wrong and get back into my normal life.

That was five years ago.

It took six months to get my first diagnosis, gastroparesis (paralysis of the stomach). It took two years to get my second, dysautonomia (malfunction of the autonomic system), and finally, four years later, the underlying diagnosis of Ehlers Danlos Syndrome (a genetic condition where my collagen is too loose, which creates problems throughout the entire body). There is no cure, only symptomatic treatment. I am going to be sick for the rest of my life. I am going to need extensive health care for the rest of my life. I have eight medications (currently), five specialists, a feeding tube, a central line, a home care company, and a gastric pacemaker.

I became sick while I was still on my parents’ health insurance. I knew that when I aged out of their plan, I was going to need a new health insurance plan, and that those plans could either deny me or charge me unaffordable premiums because of my pre-existing condition.

The Affordable Care Act’s ban of discrimination towards people with pre-existing conditions truly saved my life. I honestly can’t even begin to imagine what would have happened to me without it.

Insurance companies lose a lot of money on me. They’d rather not have me. The fact that they try and deny every claim I make, before I call and insist several times that it’s covered in my plan, proves this.

Many people have tried to assure me that the pre-existing condition clause could never go away. It’s too popular and makes too much sense.

Of course, a lot of those same people assured me Donald Trump would never be president. Or even win the Republican Primary. My life and the lives of people like me are too dependent on this Act to trust the word or common sense of politicians who have yet to agree on one concrete plan or provide solid language that will truly protect disabled people such as myself after they “repeal ObamaCare on Day One.”

Even if insurance companies are forced to accept me (or other 26 year olds with chronic illness) despite my pre-existing condition under whatever new plan happens during the next administration, I worry about the drop in other regulations the ACA put in place. The discriminatory overcharging of women is one concern. The lifetime and/or annual caps are a bigger one. My family knows from personal experience the stress that this can cause. A few years ago, my cousin had Leukemia, and his treatments cost enough that he was nearing his insurance plan’s lifetime cap of one million dollars — yes, relapsing cancer can easily cost that much. I remember our family sitting at Thanksgiving dinner, worrying about hitting this cap, and what we would do to protect my cousin if this should happen.  Sadly, he passed away before this became a problem.

I get my daily calories from an IV bag full of a liquid that costs, at my insurance company’s negotiated rate, about $200 a day to formulate, produce, and deliver to me. That’s just one aspect of my regular, expensive, lifelong medical care. I could hit a million dollar cap at an alarmingly fast rate.

And before you feel too bad for my insurance company, let me remind you that they made a net income of $2.4 billion in 2015, which was up from $2.0 billion in 2014. I paid them for a service I didn’t need for 20 years before I got sick. Believe me, I wish I didn’t need their services now.

I am afraid for the people with chronic illness who turn 26 under the Trump administration (or younger, if the ACA is repealed). I am afraid for myself. I am afraid for the many who are like me. I am afraid that our health care will be taken away. I am unable to work, I am still waiting for my disability hearing, and, even if I am approved, Medicaid is becoming more and more restrictive in my state. I am afraid of not being able to pay for my life.

I guess the question I would ask the politicians who are considering striking down these measures, that admittedly make insurance companies’ lives a little bit harder, would be this: is my life worth saving?

Is yours? Because if you are reading this and have the good fortune to not have a serious health condition or a loved one who does, let me assure you, that could change tomorrow. I was perfectly healthy until I wasn’t.

If you think you and your loved ones’ lives are important, please, I literally beg you, write and call your representatives (you can find their names and contact info here) and ask them to keep the parts of the ACA that you feel are important and vital to our well being (read more about the law here.)

If you are someone who has personally been “saved” by ACA, whether because of the new regulations on insurance companies or the subsidies that allowed you coverage in the first place, I urge you to scream it from the rooftops. Consider this your Twilight Bark Alert. You can blog on this website, or on Medium, or talk about it on your social media, or with the people you interact with in your daily life. More pressingly, I urge you to direct your megaphone and your personal experiences to your elected officials. We can put a face and a personal life to their policy arguments. Paul Ryan has a specified area of his voicemail just for the ACA. I urge you to use it. If you’re like me, and suffer from Chronic Voicemail Babbling Syndrome, I suggest writing down a few notes (or even a full script) before making the call. It helps a lot! Also, if there are things that have negatively impacted you because of this new law, talk about those things, too! This law is almost certainly going to change. We might as well take what advantages we can.

Let’s get to work. If we try, we can protect ourselves and each other.

Love and spoons,

Leah

P.S. If you want a pretty good break down of the logistics of the future of the Affordable Care Act, I suggest this article.

*”Spoonie” is self identifying term used to describe people with chronic illness. Read why here!

Leah is a 26 year old suburb-of-Philly native. She has Ehlers Danlos Syndrome – Hypermobility Type, Gastroparesis, Dysautonomia, a feeding tube, a central line, 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 This is What ObamaCare Has Done For Me, What Has It Done For You? appeared first on Spoon Shares.

If you want to know the roots, it’s pretty simple. I was born a crazy, obsessive horse lover. Zebras were like the exotic, adventurous versions of horses. My feral, child self adored them.

Things compounded when, at age seven, I was bitten by a zebra.

No really, I have photographic proof.

I was in Texas. Y’know, where these kinds of things can happen. My family and I were in a wildlife drive-thru, I fed the zebras out of my hand, delightedly and bountifully. I ran out of food, my shirt was the same color as the food bag, and, well…the pictures explain the rest.

It’s been a family story that I’ve delightedly told at every ice-breaker meet-and-greet for most of my life. As such, a lot of gifts I receive are decidedly zebra themed, such as my favorite sweater I wore to my fangirl-dream-come-true at Hamilton.

So the zebra was always a fun, somewhat quirky symbol of myself.

I got my diagnosis of Ehlers Danlos Syndrome (a genetic disease I’ve unknowingly had all my life) around January of this year, only to discover that the symbol of the EDS community is no other than…the zebra!

Not only is the zebra a symbol for EDS, it is a well used, well loved symbol. EDS awareness banners, bracelets, memes, etc are always covered in zebra stripes. EDSers refer to themselves as “zebras” or “one of the herd.” It’s actually a lot of fun and a very cool symbol to have for your illness!

It now seems that my early-age zebra bite was prophetic. Or a heavy handed use of foreshadowing. Or the zebra infected me with its vampiric bite in an effort to turn me into one of its own.

I could go all days with these.

But jokes aside, finding out that the zebra was the symbol of my permanent, disabling illness, was not only deeply ironic, it was a little upsetting to me. Zebras were a bizarre, fun, personal flag of mine. Now it felt like it had been co-opted by something I felt very ambivalent about. Yes, having an official diagnosis was incredible, and having an explanation to my weird, life-long body issues was a tremendous relief (you mean my ankles didn’t just give out and make me fall because I’m unbelievably clumsy? And my unexplained back pain wasn’t all in my head?), but it’s still the thing that causes me to feel sick and debilitated every day of my life. I didn’t want the symbol of that to be my beloved zebras.

Here’s the thing, though. EDS isn’t new to my body, just my knowledge of it is. I have always had this disease, just like I have always loved zebras. Whether I knew it or not, I have always been an EDSer, and I have successfully (to varying degrees) lived with it my entire life.

As much as we like to say “I am more than my illness,” and “my illness doesn’t define me,” to some extent, my illness does define me. Yes, I am more than just my illness. I am also nerdy, and goofy, and I love animals, and I have a random obsession with English Tudor History. But I am also defined by my illness. My current lifestyle, my likes, my daily habits, my values, my relationships…those have all been determined, by some measure, by my illness. And, I guess, to some extent, it always has been. I have always had a lot of determination and resilience, and I think that is partly because I’ve lived my entire life in a body that was always somewhat dysfunctional. I learned at a young age how to work hard at a thing that didn’t come as easily to me as it did to other people, even if that thing was as simple as “walking.” There were certain things growing up that I didn’t pursue or enjoy because my body didn’t allow me, and that has become exponentially more true in the past four years, since my illness has become more acute. A lot of things about me have changed in that time period that I don’t like, for instance my self-confidence and self-competence, but some things have changed for the better. I know I am a more patient, more empathetic, and more appreciative person than I was before becoming acutely ill. So for better or for worse, every part of me has become informed by being chronically ill. That doesn’t make me any less “me,” it just make my illness one of the many things that completes the “me” package — but it’s a very hefty part of that package.

So the zebra is still a symbol of me, and the fact that it also symbolizes Ehlers Danlos Syndrome just makes it even more “me.” Sure, that makes the symbol more complicated than I had realized as a kid, but life is more complicated than I realized as a kid. And now I get to share this symbol with a lot of kickass EDS warriors who share and understand my struggles. Besides, even if we are all part of the same zebra herd, we still have our individual stripe patterns that keep us our own unique persons.

I am an EDS zebra. I always have been and I always will be, even if a cure was discovered tomorrow. I still love my (literal) zebras as much as I still love my old self…I just understand them both a lot better now. And that remains something to celebrate.

About the Author:

Leah is a 25 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 On Zebra Stripes and Disabled Identity appeared first on Spoon Shares.

Okay, it’s not Valentine’s Day anymore, but I started writing this post on Valentines Day before my brain gave up, and this image was too cute not to use.

You’ve asked, both on social media and in life, and here I will answer!

Just a primer, since my answers are limited only to my experiences:

• I have a surgically implanted j-tube, which means it goes into my jejunum, which is the intestine past the stomach. It also means that my feeding tube goes through my abdominal wall instead of through my nose.
• I have a feeding tube because I have gastroparesis (secondary to Ehlers Danlos Syndrome — Type III Hypermobility), a syndrome where your stomach doesn’t digest food at a normal pace. It has varying severities, and mine is severe enough that I need a feeding tube in order to get all the calories I need in a day.
• I’ve had my tube for about a year and a half now, and I am still experimenting to find the right rate/timing/formula to best relieve symptoms and maintain adequate nutrition. This is a longer process for me than it might be for some others (depending on their condition), because I still have dysmotility in my intestines as well as my stomach, so bypassing the stomach only bypasses part of the problem.

On to the questions!

Can/Do/Why do you still eat food? 

This is probably my number one asked question, and it varies depending on what I’m doing in the situation. Yes, I can and do still eat food, and I both want and have to eat orally. On average, I get about 500 calories of food from my formula. The rest I get from oral food (a lot of that is, unfortunately, sugar and soda from my ginger products, but I’m working on that!) It’s a bit more complicated putting food into a jejunum than a stomach, because the stomach is a giant pocket designed to hold a lot of food and distribute it slowly down the intestine. The intestine can’t hold as much at once, and so you have to put food into it more slowly. And when your intestine moves at a delayed rate, like mine, it gets even more complicated. So I pump food into my intestines at a very slow rate, hence the low amount of calories from my feeding pump, and the need to supplement with oral food. Actually, some days, when I’m in a symptom flare, it’s easier for me to orally eat a piece of bread than pump formula (because it absorbs some of the stomach acid).

Do you still get hungry/cravings/want food?

Okay, this actually may be my most asked question.

Truth: I have not been truly hungry in four years, since I developed gastroparesis. I do get brain signals that I needed food, like lightheadedness or a headache, and my stomach will feel calm enough that I feel like I “can” eat, but my stomach doesn’t really “pang” for food. But I will get cravings. Oh lord, do I get cravings. I was in the hospital for constant vomiting and dehydration, and I was flaring badly enough that I literally couldn’t keep down chicken broth, and yet I remember seeing a food commercial on my TV set and desperately wanting whatever they were advertising. It’s a very confusing feeling, when your stomach revolts at the idea of anything going inside of it, but your taste buds are demanding a Chipotle beef burrito with extra sour cream and a side of guac (No, I can’t eat that even on a good day!). And yet it’s one that I have constantly. I try and use tea, preggo drops, and ginger candy to control my cravings when I don’t feel well enough to eat.  But sometimes I give in and eat some food (within my allowed diet) when I know I shouldn’t, and it makes me sick. This has led to the acronym GTAF (Got Tricked, Ate Food) that I often use with Catherine over at Finding My Miracle. Don’t get me wrong, I don’t always have cravings. Sometimes I literally will not let my mom ask me about food from the grocery store because I can’t even stomach the idea of any form of food. And sometimes I’m just not even thinking about it, and I can see food without being bothered. But if I haven’t had food (enteral or oral) in a while, that’s when the cravings kick in big time, because my brain is telling me it needs food while my stomach is hiding in a treehouse with a “No Food Allowed” sign.

So, that is a long and complicated way of answering: “No, but yes.”

When you disconnect your feeding tube, is there an open hole to your intestines? 

Yeah, and let me tell you, it is really useful for storing petty change.

Sorry, sorry, I promised no snark! There is an open tract in my abdomen leading to my intestine, but the tube has a cap so that when it’s not in use, it stays completely shut. Let me tell you how fun it is when that opens in the middle of the night and there’s stomach fluid all over you!

Actually, that’s only happened with my med port on my extension set when I’m hooked up to the pump. The plug to the actual feeding tube is pretty tight and hard to open without intent.

There is still a tiny bit of “wiggle room” around the tube, but not enough to cause any concern for something getting inside. The real issue is drainage coming out, which is why I always have a stoma pad, as pictured above. And, because I am mentally a four year old, my stoma pads are all Disney, dog, pirate, or Harry Potter themed.

What’s the best part of having one/how has it improved your life?

Actually, in a lot of ways!

• Food isn’t the villain I have to battle anymore. Before I had my tube, in order to get enough calories out of the small amount of food I can have at a time, within the limited part of the day I was well enough to try to eat, I was eating every two hours. This doesn’t sound like a problem for a healthy person, but when you’re nauseous and cramping all the time, it’s slightly torturous. So having that burden lifted off of me was an immeasurable relief.
• I get more freedom with the food I do eat! Since I don’t have to worry about saving my stomach space for only the most nutrient dense, high calorie, minimally filling, low fat/low fiber foods, I can eat the food I really want to eat instead. Well, not all the food I want to eat; I still have to follow my strict diet. But instead of a tasteless protein drink, followed two hours later by a Macrobar, followed by cream of wheat with veggie puree mixed in, I can just have smoked salmon with avocado on toast and a few low fat gingersnap cookies, then call it a day food-wise, and feel like I can still get the nutrition I need while actually enjoying the food I did get to eat. And because I eat less food, I can be ever so slightly riskier with the food I do eat.
• I’m healthier. This is the obvious one. Not only does having more proper nutrition help my symptoms, so does the lessening of the nausea that comes with not having to put all my food through my stomach anymore. Plus, taking (some) of my meds through my tube instead of by mouth turned out to be a big game changer in terms of improving symptoms, because, turns out, medicine works a lot better when it’s digested at a normal rate!
  
• I get to stare at people. Okay. This one is weird. But I’m pretty weird. And also kind of awkward. So…I love to people-watch. I like to make up stories about them and guess things based on their appearance/what they’re doing, because I’m secretly Sherlock. Y’know, if he were significantly less smart. 
  But the problem is that, because I’m so horrible and awkward, people always notice I’m looking at them immediately, and I have to look away. But, when I’m out with the feeding tube, people are either already staring at me or afraid to look at me, so I figure I can stare at whoever I want. And I enjoy that way more than I should.
  
• Oh, also, sometimes when I’m in a place where there’s a sign that says “absolutely no food or drink of any kind beyond this point,” I smile slyly and walk by with my backpack like I’m some sort of badass loophole finder. “Oh yeah, sign? Any kind? Didn’t see this comin’, did ya?”

Is the site of the tube ever painful?

For me, luckily, no. Occasionally, I’ll feel some muscles pulsating around the tube that feels a bit uncomfortable, but it typically doesn’t last too long. Others aren’t as lucky, and do have pain around their tube site, but that’s not the norm. More common is to have granulation tissue form around the tube site (because the body gets confused and wants to close the hole we’ve put into it), and that can definitely sting. I have had this twice, and luckily for me it was burned off with silver nitrate sticks by my Interventional Radiologist (who switches out my tube every six months or when there’s a problem, like the balloon holding it in pops or it gets clogged), and as long as I keep a clean stoma pad to wipe away the drainage under my tube and apply topical ointment twice a day, it stays away.

Does the formula/water feel like anything going in?

The formula goes in at such a slow rate that I don’t feel it. But whenever I flush water to clear out the tube/hydrate? Yes, I feel that. And I wish I could describe what it feels like, but I cannot. It’s weird, but not painful.

Can you taste the food going in?

Nope! Although my first formula was inexplicably vanilla flavored. Which I thought was strange. My dog thought it was tasty, though.

Do you take vitamins?

Since my formula is sort of one giant vitamin, no. Although, since I’ve cut back (for now) on how much formula I get in a day, I probably should.

Is it hard to shower/keep clean?

Since the tube goes into my gastric system (as opposed to my veins, as some people do), and the gastric system has a lot of bacteria in it by nature, my tube needs to be kept clean, not sterile. So I shower like I normally would (which is kind of abnormal, but not for tube reasons), and I just clean around the tube site with regular body soap. The only other thing I have to do is, as mentioned before, change my stoma pad regularly and apply the ointment.

Does it bother you not to eat?

I kinda covered this in earlier questions, but I’ll address this in the general “does it bother you that you can’t just grab a taco from a food truck or dig into a Ghiradelli hot fudge sundae?” sort of way that I think it’s usually intended. Yes, it does. I have a specific meal plan in mind for the day that I am miraculously cured because the Blue Fairy comes in through my window and turns me into a real 25 year old (spoiler alert: it starts with bloomin’ onion rings at the Outback). But there are a lot of things a lot of people can’t do, and it just is what it is. I don’t like it, but I accept it, and I focus on the things I can do.

Can you still have children?

No one asks me this directly, but they ask my mom this about me a lot. While I am not healthy enough to think about having a child, nor would I particularly want one if I did, and while I wouldn’t want to pass my illness (it’s genetically a 50/50 shot) onto my child, I am still physically able to have a child with my condition and my feeding tube. There is no reason a feeding tube in itself would stop a person from being able to carry a healthy child. But, lemme tell ya, that is the least of my concerns.

How long are you going to have it?

Good question. For the foreseeable future, or until something drastically changes in my health.

Can you have just one bite of ____?

Nope. And please don’t tempt me, because it does get very hard to resist, and I will pay for it.

Although, sometimes I do the very classy “chew and spit” to get a taste of something.

Does your tube ever get caught on stuff (while you’re hooked up)?

Yup. And it HURTS. But I’ve gotten better at making sure it doesn’t happen.

Why the backpack?

Because my IV pole is Stupid. That’s right, capital S. I named it Stupid because it’s so stupid. If you have carpet (like I do), it’s impossible to move the Stupid thing around (I have the bruises on my heels to prove it!). Or go between floors. Or out of the house. Or carry things because one hand has to move the pole. But it’s easier to hang the bags on Stupid than thread everything through my backpack, so when I’m in bed I use the Stupid IV pole, but if I have any intention of moving around while hooked up to my tube, I use the backpack so I can be mobile. And, since I’m technically supposed to be hooked up as many hours of the day as possible, having a good backpack to carry everything around in is very necessary and helpful! Plus, I’ve secretly always wanted to be Dora the Explorer.

Can you make your own food for the tube? Is it blenderized?

Because my formula goes into my intestine instead of my stomach, my formula is already broken down (as the stomach would do) into semi-elemental form by Nestle (that’s right, the candy company). My home care company stocks it and ships it to me monthly. So, no, I can’t just pop some chicken and potatoes into the blender and then put it through my tube. Although, with the correct precautions and recipe, someone with a g-tube (that one goes into the stomach) actually could. Bright side, my food is now covered by my insurance! So I like to tell my parents I’m actually saving money, which is why they tell me they’re putting my brother in charge of my future finances. ¯\_(ツ)_/¯

Can I see the tube?

If you’re a friend who cares about me, hell yeah! I don’t mind. I’d be curious, too! But I realize that some people can’t help what they’re squeamish about, so I don’t show my tube without warning…that is, unless I need to fix or check something in the moment, in which case my weird medical needs outweigh your potential medical squeamishness.

I will say that, if you are squeamish, please don’t ask to see the tube if it’s going to make you react badly. Because having someone visibly squirm about the thing that is semi-permanently attached to my abdomen does not feel good. I realize it’s involuntary, and by no means does it make you a bad person, but it’s just a situation best avoided.

If you’d like to see the tube right now? Well, I will deviously make you click this link so that you improve the traffic of my site in order to see it!

How did you get this? 

I have a genetic disorder, so I’ve always had this condition (as I found out last month), but I went through 21 years of my life with only mild to moderate issues from it. Things were kicked into high gear after I had a nasty case of mono and took a lot of heavy antiobiotics that weren’t really great for my body. Are those the only reasons? Would I have eventually gotten all of these other issues anyway and mono was just the straw that broke the camel’s back? Good question. Ehlers Danlos Syndrome is not a well understood condition, especially my type, so I have absolutely no idea. But hey, if you happen to get a degree in medicine, become a researcher, and find the answer, gimme a shout! Or you can donate to further research and care, but I’m not here to plug my own illness, as there are many different kinds that necessitate feeding tubes. This was all about awareness, because, as much as people want to know what actions they can take to help, oftentimes listening is the very best one. So thank you for asking, listening, and trying to understand. It really makes a big difference!

And hey, if you’re reading this because you think you might need or are planning to get a feeding tube yourself? Check out my vlog series! Which I will add to again soon. Really. I promise!

If I forgot a question or you want to add another one, just post it in comments and/or my social media. Sending y’alls spoons and love.

About the Author:

Leah is a 25 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 Life With A Feeding Tube: FAQs appeared first on Spoon Shares.

We’re coming to the end of Feeding Tube Awareness Week, and while I did not get to another Feeding Tube Vlog like I wanted to (I will soon, really!), I thought I’d dispel some myths about feeding tubes that I, myself, believed before I got a feeding tube a year and a half ago. I also asked some of my lovely internet people what they thought of feeding tubes, and got some really great questions! So this post will be followed by a FAQ. If you have any more questions, just post it in the comments or message me, and I’ll answer them!

But first, let’s have a tubie version of….

MYTH: A feeding tube is an illness. 

There is a belief that having a feeding tube is a condition in itself. That the very act of having it means you are sick. Don’t get me wrong, many people (including myself) who have feeding tubes are pretty darn sick, but that’s not true of all tubies. If you have a feeding tube, that does, of course, mean something about your body doesn’t work in quite the way it’s supposed to, but the feeding tube is there to fix that. It is primarily a medicine. Just like my Zofran or my Atenolol or my compression stockings, it helps keep my body as healthy and functional as possible. My feeding tube certainly causes a lot of issues and makes my life more complicated in many ways, but the reason I deal with all that is because, overall, it makes my life better. It gives me the calories I need. Just like a prosthetic limb helps an amputee, my little Birdie helps me digest food that I wouldn’t otherwise be able to. For many people, because of their feeding tube, they are now perfectly healthy.

MYTH: They’re big, weird, and scary looking. 

When I got changed with a bunch of friends before a wedding, and I warned them ahead of time the tube was “coming out” in case any of them were squeamish (as I usually do), my one friend commented how “surprisingly normal” my tube looked. And I have to agree! I know before I had a tube I had an image of a large, plastic, unbending tunnel poking out of my clothes all the time. I was wondering if I would have to cut a hole through all my clothes just to wear them. Nope! They’re tiny, flexible, and pretty nonintrusive when it comes to clothing. In fact, here’s mine!

Now, I have a “button tube” which is designed to be smaller and more discreet. Here was my original tube, which was bigger and a bit more cumbersome, but still not the giant pipeline to my stomach that I had imagined before I got a tube.

So yeah, they’re not as bizarre and unnatural looking as you probably imagine.

MYTH: If you have a feeding tube, you’re not allowed to eat.

Well, this is only half a myth because it is true for a lot of people. Many people have feeding tubes because they either can’t tolerate food at all, or because they can’t swallow food for cognitive or physiological reasons. But other people, like me, have feeding tubes for supplemental calories. I can’t eat enough food in a day to get all the calories I need without getting sick. I also can’t pump enough formula through my tube to get all the calories I need in a day without getting sick. So I get some of my calories from oral food (but in a restrictive diet), and the rest from my tube. It’s a balancing act, and it’s a tough one that I’m still struggling to perfect. But, bottom line, feeding tubes don’t always mean the end of oral food.

MYTH: They’re only used for end of life care/really old people.

Now, obviously I have a very skewed sample. But all the people I personally know with feeding tubes are in their 20s. On my “adult tubie” Facebook group, there are people of every age group: teenagers, 20s, 30s, 40s, and upwards. And a lot of the information you find online is geared towards parents who need to care for children with feeding tubes. So you get all sorts. Yes, plenty of older people need feeding tubes in their end of life care, but that’s only one portion of the Tubie population.

MYTH: Feeding tubes are a one size fits all deal.

Now I’m not referring to the fact that feeding tubes actually come in different sizes (which they do!), but as you can see from the last two myths, the manner in which a person uses their feeding tube varies widely from person to person. Not only are there two major kinds of feeding tubes in the sense that there are feeding tubes that go directly to your stomach and feeding tubes that bypass the stomach and go to your intestine, and not only are there feeding tubes that go through your nose instead of surgically through your abdomen, but people use their feeding tubes in all manner of ways, depending on their specific conditions and body’s preferences. Some people bolus their food all at once for a short period of time three times a day, like a person would with their regular meal times. Some people have to have their feeding tubes pumping formula into their bodies 24 hours a day in order to get all their calories. Some people only pump during the day or only at night. Some people never eat food, some people eat some food, and some people bypass their gastric system completely and get their nutrition through their veins (called TPN). The ways in which people approach using their feeding tubes are as varied as the reasons people use them.

MYTH: You should avoid feeding tubes at all costs because they are risky and can easily become dangerously infected.

Okay, infection is always a concern, and hence I always have hand sanitizer on me. But when it comes to the gastric system, you have to be clean, not sterile. And if you do get an infection? As long as you catch it early, a simple course of antibiotics should fix you right up. If you have TPN, which, again, goes through your veins, the risk of infection is much higher and you need to be much more careful. But for enteral feeding tubes? With some basic precautions, you should be good to go.

Stay tuned for my FAQ!

The post Six Myths and Misconceptions about Feeding Tubes appeared first on Spoon Shares.

I have a lot of friends and family in the medical field, so I see this a lot. I understand where it comes from; there is a lot of false information out there that will mislead people into believing things that are categorically false (cough-anti-vaxxers-cough), and that can be frustrating for the people who spent a lot of time, money, and migraines learning the facts.

But, unfortunately, this kind of meme is also reductive to a resource that genuinely helps a lot of people with illness, chronic or otherwise. Because a google search can truly be a sick person’s best resource.

Because, quite often, our google searches find the answers faster than the people with medical degrees.

This isn’t because those medical degrees aren’t incredibly valuable and knowledgable in a way that patients are not. They are. We love medical degrees. We rely on medical degrees.

But those medical degrees have very full days, a wide variety of patients with unique problems, and a lifetime of textbook information swirling around in their head. Most of the time, they don’t really know us. All of the time, they haven’t lived a single day in our bodies. We’ve done quite a bit of that.

I currently have three diagnoses. Exactly zero of those diagnoses were suggested by a person with a medical degree. One (my most recent) was suggested by a friend with the same syndrome. The other two were suggested by me after (you guessed it) a google search.

Diagnosis 1: I was sick and vomiting all the time. I had no idea why. I had come home from my semester abroad at school because I could barely stand upright. Routine tests for the scary C word and other awful things fortunately came back negative. The more benign, fixable things (like a parasite) unfortunately came back negative, too. I was sent to specialists, run through test after test, and I was still stuck laying in bed with intense abdominal pain, wondering what the hell was happening with my body. Searching around mayoclinic.com, I discovered something called “gastroparesis.”  A bell rang in my head. Almost all the symptoms lined up. This made sense. I could feel it. This was what was wrong. I went into my next appointment insisting on a gastric emptying scan. It came back positive, and I wasn’t even a little surprised.

Diagnosis 2: Finally given nutrients from my feeding tube, I was wondering why I was still fatigued and lightheaded all the time. Multiple intelligent, caring, and thoroughly competent doctors suggested continued malnourishment and dehydration. But it just didn’t seem right. Reading the fabulous Just Mildly Medicated‘s blog, I noticed her symptoms sounded very familiar and similar to mine. I looked more into dysautonomia. I bought a blood pressure cuff from CVS and noticed my abnormal heart rate changes. I asked for a cardiac referral, got a tilt table test, and was diagnosed with dysautonomia. I wasn’t even a little surprised.

Diagnosis 3: Searching for a cause of my other syndromes, which are usually just as much symptoms as they are conditions themselves, I was talking to my good friend who also has Diagnoses 1 and 2, and she asked if I ever considered her underlying diagnosis, Ehlers-Danlos Syndrome. When I thought I didn’t fit the bill, she asked me questions, explained the syndrome, and effectively diagnosed me. I did more (yup) google searching, and the same light in my head went off as those two other times. I made an appointment with a geneticist who clinically diagnosed me with Ehlers Danlos Syndrome – Hypermobility Type III. I wasn’t even a little surprised.

The moral of these stories is not that doctors are incompetent. It’s just that they’re limited because they are experts in medicine, not experts in your body. You have lived in your body every moment of your life, so you know it in a way that nobody else can. So you often get a gut instinct for when something is right or wrong with it.

Now, that being said, I would be nowhere without the doctors who can effectively run the tests and prescribe the medication to help me deal with my illnesses. There’s so often a mentality that the doctor is the mechanic and you are the car. So you should just shut up and let them fix you. But you are not a machine. You are, unfortunately, much more complicated than that.

So the doctor/patient relationship, at its best, is a collaboration. There needs to be trust both ways. Because the truth of the matter is that, because I have the time to research and the personal, lived experiences of it, I know more about dysautonomia than my cardiologist. But he knows more about the cardiac and vascular system than I ever will. And so nothing will ever get accomplished unless the two of us trust each other. And if we don’t trust each other? It’s time for me to move on to a different doctor.

I am lucky, though. My current team of doctors does trust and respect my word, and I theirs. This isn’t the easiest to find, and I didn’t find it right off the bat. So, dear spoonie reader (or spoonie loved one), trust and respect yourself enough to find a doctor who trusts and respects you. You deserve it, and you need it. Use the google search, be skeptical of the source, collaborate with your doctor, and, above all, trust yourself.

About the Author:

Leah is a 25 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 Self Diagnosis: Sometimes Your Google Search is Better Than Their Medical Degree appeared first on Spoon Shares.

Okay, I’m not a poet, and I certainly know it. So here’s a picture of my adorable dogs to make up for it.

But there is a point to my sappy spoonie story-time, and that is a message I want everyone with chronic illness to realize, that I have slowly realized in my past four years with chronic illness.

Yes, it is heartbreaking, frustrating, painful, and sometimes terrifying to have a chronic illness.  The every day things healthy people find so simple are often insurmountable obstacles for us. We mourn our old selves, our old lives, and the goals and life paths we wanted for ourselves that we can no longer achieve. This is, needless to say, not the life we envisioned for ourselves.

But that doesn’t mean we can’t have a wonderful life.

I didn’t get to graduate college, I can’t work, I can’t do more than a few hours of real activity without needing to lay in bed recovering and miserable for several days afterwards.

But I can text with my friends and family. I can knit and crochet and give gifts to people that makes them smile. I can watch National Lampoon’s Christmas Vacation with my family and laugh until the room spins. I can play board games with friends and giggle about how my short term memory is shot from the extra activity, and not remember what the hell was on my playing card that I checked a minute before. I can lay down and watch Doctor Who with a dog in my lap and then discuss it to death online with my friends.  I can sing songs (badly) about poop with one of my best friends, and laugh about our dysfunctional bodies.

Yes, it can be sad that that is all I can do, and we live in a world where we feel pressured to do more and achieve everything that is humanly possible. But when all that is humanly possible is making a sweater for my mom, that may not be such a bad thing. My life is not what I thought it would be. It is not what I wanted it to be. But it can still be a good life. I can still take joy in the people who support and love me, and the small, seemingly inane things that I am able to enjoy doing each day.

My body may be crap, and it might always be crap, but my life can be good. Really good. If I accept the limitations and the realities of the life my body has created for me. It’s a smaller life, and it’s not good every day or every minute. But no life is. I spent a long time relying on the idea that one day this “sick-chick-life” would end and I’d start my real life.

But this is my real life. And maybe one day I will magically recover and everything will be different, and I can have the life I envisioned. And don’t get me wrong, I’ll never stop hoping and fighting for that.

But if it doesn’t, I know I’ll be okay. And you will, too. Because once you let go of the idea of what your life is supposed to be and start embracing what it is at this moment, you can start to enjoy it.

And then you can have a truly wonderful life.

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 A Message to All Spoonies: You Can Still Have A Wonderful Life appeared first on Spoon Shares.

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.

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Hey everyone. So, last February was the end of a very long winter for me. And facing similar struggles was my good friend Catherine Richardson. Catherine and I talk pretty much everyday, because, well, she’s an awesome sauce spoonie and always fun to talk to. We make jokes about our confusing bodies and share our constant poop struggles (true friendship, guys). We’ve never been in the same room, or even the same country, but when you can casually ask somebody, “How’s the poop coming?” that starts to become a lot less important.

I’m spending a lot of this post talking about poop, which actually has nothing to do with what I actually want to talk about. I could blame the brain fog here, but I think we all know by now I’m just a senile old woman stuck in a 25 year old body.

So one frustrated night, when I wasn’t able to get out of bed and Catherine wasn’t able to get any of the doctors appointments she desperately needed, we were honest. More honest than I’m usually willing to be with myself, much less the faceless internet or, even scarier, my loved ones. We had a conversation about the dark struggles of having a chronic illness, and what it feels like to have our pain so often dismissed because “we’re not dying.” Don’t get me wrong, terminal disease is a whole other bag of stress and pain that I am lucky to not have to deal with. But that phrase is so often used to dismiss the struggle and pain experienced by people who feel sick almost every day of their life. So we wrote a poem to put words to the struggle that hides underneath the mask of “not looking sick.” It didn’t go viral or anything, but we had a lot of feedback about the chord it struck with those who did read it. So we felt it was a story that should be told. And who better to tell it than the people who write about it regularly? So we gathered some of our chronic illness blogger buddies, and we made this video. To read a much more articulate summary of my feelings about this video, read Catherine’s post here.

We don’t look sick. But we are. Which means that the only way to understand us is to listen to us speak. So that’s what we’ve done. I encourage other people with chronic illness, or their loved ones, to share their stories as well in the comments of this post or the video! Or, better yet, write a post.

A heartfelt thanks to all the bloggers who contributed. This is no small task for someone who has to deal with sickness on top of normal life, so I’m just thrilled and grateful for everyone’s enthusiastic and willing hard work on this project. Below the video are the links and bios of all the fabulous people who made this project possible.

This is our #invisiblefight.

In order of appearance:
Catherine Richardson – Born and raised near Vancouver, Canada, Catherine is in her mid 20’s blogging and crocheting her way through all the unknowns of being a medical zebra and finding lots of opportunities to give her sense of humour some exercise along the way.
Blog, Facebook

Leah Holstein – A suburb-of-Philly native, Leah is a 25 year old tubie with gastroparesis and dysautonomia. She likes horses, Disney, and anything snarky.
Website, Twitter

Katie Brook – Living in Yorkshire, Northern England, Katie uses her love of writing to raise awareness about Myalgic Encephalopathy (ME/CFS) with the hopes of helping fellow sufferers feel a little less lonely along the way.
Blog, Twitter

Amanda Bryant – From Virginia Beach, Virginia, at 25 years old Amanda suffers from a severe form of the invisible illness gastroparesis. In spite of things that try to knock her down the daily, she is a newly-wed with an amazing 8-year-old stepdaughter. Her and her husband also own a business that does custom reclaimed pallet and barn wood furniture.
Instagram, Fundraising Page

Sarah Frison – Sarah is an integrative nutrition health coach from Belgium. As a result of living with gastroparesis, dysautonomia and gluten intolerance, she now uses her health coach and pastry chef training to share recipes, tips and tricks to help others live as well as possible despite their own dietary restrictions.
Nutrition Consulting Website, Twitter

Sarah Rush – From Vancouver, Canada, 21 year old Sarah lives with Ehlers-Danlos Syndrome and many other complications and conditions that come along with it. She is a psychology student who loves music, photography and any opportunity to raise awareness.
Facebook

Samantha Brink -I’m a book worm trying to make my mark in the non-profit world. Humor helps me battle back my anxiety and cope with a mish-mashed disorder, which I’ve come to understand as “slightly broken but I’ll never surrender.” Blogging allows me to unleash my quirky side and share some of the madness from balancing my medical needs with my career, grad work, and family.
Blog, Twitter

Stephanie Torres – While Kansas will always be home, Stephanie has lived in Washington State for the last 14 years with her husband and 2 fur babies (aka her “angels”). Diagnosed with gastroparesis and dysmotility in 2008, she had no idea how much her life would change. By 2011 she required a feeding tube and in 2013 had no choice but to start IV nutrition. Her dreams may need to be altered but she continues to look for the silver lining, hosting awareness events, working as an advocate for others on nutrition support, and making fun and laughter a priority.
Blog, Facebook

Lisa Tschetter – Living just outside of Vancouver, Canada, Lisa lives with POTS and gastroparesis. She has taken everything she has learned about coping with POTS and created a website to help others living with the same condition get a handle on their own symptoms. She loves playing the piano and has recently become hooked on crochet.
Blog

Chanel White – From Seattle, Washington, Chanel is living with a terminal diagnosis of systemic scleroderma and a whole host of other complications. However, despite the fact that she is dependent on a feeding tube, a central line and supplemental oxygen, Chanel focuses on living as fully as possible and acts as a voice for others with scleroderma and invisible illness through her writing and speaking engagements.
Blog, Instagram

Michaela Shelley – Michaela is your not so typical high school senior living in South Carolina. She is fighting Mitochondrial Disease, Dysautonomia(POTS), and Gastroparesis. Living with multiple chronic illnesses has changed her life dramatically but it’s made her see a different view in the world and for that she is very thankful.
Blog

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