Being A Spoonie

I’ve been chronically ill my whole life, but I’ve only been a spoonie for about two years. If you’re a healthy person, this may sound like a lot of gibberish to you, but don’t worry. There’s a perfectly reasonable explanation for my obsession with kitchenware.

You see, a spoonie is simply a person with a chronic illness or disability that identifies with The Spoon Theory, written by Christine Miserandino about her experience with lupus. Since a lot of disabled or chronically ill people have similar experiences, her way to explain being ill rung true with a lot of us.

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Being a spoonie is more than just being ill though. When you take up the spoonie label, a whole new world opens up to your sick self. Spoonies are, as a friend once said, “the coolest group of people you never want to be a part of.” And it’s true. Being a spoonie means having a support group, both across the internet and many times in real life, that’s available at any time and has experienced almost everything you’re going to go through.

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Other than community, being a spoonie means having an easy way to explain your chronic illness to healthy people. Because seriously, healthy people, we love you- but sometimes you just don’t get it!

When I’m searching for a way to make my husband or friends understand, I can send them a link to the spoon theory, paraphrase, or send them, phrase in hand, to the almighty internet. Sure, the spoon theory doesn’t work perfectly for all aspects of my illness, but it’s a good place to start explaining.

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There’s a lot of great reasons to be a spoonie- last but not least because it’s a lot easier than typing “chronically ill” all the time- but there’s more to it than that. Being a spoonie has made me more friends than any other movement or community I’ve joined. Being a spoonie has helped me accept my illnesses, and work with them instead of constantly fighting to the brink of exhaustion. Being a spoonie has given me the drive to advocate and educate about my rare disease. I’ve been able to help newly ill and newly diagnosed people find their way into the spoonie world.

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This week is Invisible Illness Awareness Week. I’m pretty aware of my illnesses, but there are a lot of people who aren’t. Awareness is great! It helps get us money and research for the illnesses we fight. It helps other people recognize their symptoms and get a correct diagnosis that otherwise could take years. This week, if you’re a spoonie, I challenge you to share your story. If you’re not, I challenge you to educate yourself about the unique challenges the chronically, invisibly ill face. And to all of you, I challenge you to be kind to yourself this week. You deserve it.

Working from Home with ADHD

ADHD is a really misunderstood problem, especially to the average layperson. I get told a lot “but you aren’t hyper,” which is funny, because most people with ADHD aren’t bouncing off the walls. However, I always seem to be restless, I move my feet and hands constantly, and when I’m presented with too many choices or tasks, I shut down completely. Seriously. Recently, I had to call my husband because I had too many options for my Keurig.

So, working from home works well for most of my chronic illnesses, for reasons like “I don’t have to stand up and pass out when my POTS is flaring.” But balancing working at home with my ADHD? That’s been an adventure.

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The first thing that I did when I started working from home was download a planner. Some people use Google Calendars, some people use a written planner, and some people use an alarm and reminders on their phone. I use Planner Plus, and it works for me.

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More importantly than planning, I’ve found that setting a routine is important for me. I have to do the same thing at the same time every day, or I can’t get my mind into work. I change into some comfy clothes that aren’t pajamas, set up my work space, brew a cup of tea or cocoa in my Keurig, and sit down to work. If I’m out of tea or cocoa, it’s hard for me to get in the zone. I guess I’ve trained myself pretty well!

Since getting a routine and planner, it’s become so much easier to work from home. I no longer find myself idly playing Tetris or browsing Tumblr when I should be doing anything other than that. However, if anything gets me out of the zone, I can’t get back in unless I brew myself another cup of tea or cocoa! I think I need to work on that…

Living, Not Surviving

Sometimes, with chronic illness, it seems like I’m using all my energy just to survive. Just eating, showering, and feeding the pets can take an entire day’s worth of energy. I felt so down about it, I started comparing myself to my healthy friends- look at them, in college, working, living on their own. But after I talked to them? It seemed they were just as stuck as I was.

They were stuck in a routine, doing the same things day after day to get by. Beyond their college classes and their day jobs, they had no clue what to do with their life, or what really made them happy.

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It seems that I wasn’t the only one unhappy with my life! It seems like a lot of people don’t actually know themselves, what they want, or what makes them happy. For me? I’ve found now that good food, travel, and writing make me happy. So does makeup, my pets, and educating about chronic illness. That’s why I started regularly posting on this blog- it’s fun!

So if you’re in a rut, I challenge you this: do one thing for yourself each week and don’t feel bad about it. It can be as simple as ordering a coffee with whole milk when you think you should get skim (but you really want that full fat latte) or as grand as signing up for a cooking class or a vacation!

Find out what makes you shine.

Personally, I find that my mental health improves tremendously when I’m doing things for myself. My mental health, in turn, helps my physical health. I know this won’t work for everyone but in a lot of cases, it’s worth a try.

ALS Ice Bucket Challenge

One thing any illness needs is awareness. We’re all pretty aware of various cancers now, and for good reason. Millions of people have cancer, and there are some really good awareness campaigns out there. (There are some not so good ones out there too but let’s focus on the good for this post.)

You know about pink for breast cancer. Red for heart disease. You might even have heard about butterflies for lupus. But when was the last time, before the Ice Bucket Challenge, that you heard about ALS?

ALS is more commonly known as Lou Gehrig’s Disease. It’s a neurodegenerative disease that affects the spinal cord and brain. As the disease progresses, people with ALS lose muscle control, eventually becoming entirely paralyzed. The only end in sight for the disease is death, as there is currently no cure.

The Ice Bucket Challenge is working to change that! By making people aware of the disease using videos you want to watch- I have seem some funny challenges, some heartbreaking challenges, and some just plain weird challenges- and encouraging donations, the Ice Bucket Challenge is providing a lot of press and money for ALS. Donations are at an all time high!

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This is fantastic, and as someone else with a chronic illness, I wish the charity continued luck and donations. In fact, my husband was recently challenged! We didn’t have $100 dollars, the amount you should donate if you refuse the challenge, so he dumped ice water on himself and we made a smaller donation.

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Are you taking the challenge? Are you donating?

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I personally can’t take the challenge, as temperature changes like pouring ice water on myself tend to make me pass out, but I would love to see more of my family and friends donating and raising awareness!

A Southern Celiac is now on Facebook!

Heads up, guys! A Southern Celiac is growing! I now have my own Facebook page, here! Check it out and support me as I continue to improve my blog and share my story!

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On the Facebook page there will be tips, posts, and positivity exclusive to the Facebook page, so check it out if you’re interested. Thanks for the support so far!

Convenience in the Kitchen

I like easy. I inherited this trait from my mom, who loves kitchen shortcuts. They all seem to work for her. I have fond memories of homemade egg rolls, curries, and pasta sauces that she whipped up with seeming ease. The same shortcuts and gadgets that she used with such success seem to be lost on me. I can burn brownies, break blenders, and ruin meals like nobody’s business. Because of this unlucky characteristic, my mom and husband have spent the past two years building me a “kitchen for dummies.” It has gadgets even I can use, and meals I can make even when my POTS is flaring and I can barely stand. So, what’s in my kitchen?

1. Pre-cut everything

I’m the worst about dislocating my fingers. Whether it’s from rampant texting, picking up kittens, or chopping vegetables, my hands are in a constant state of pain and dislocation. Because of this, I buy as many things pre-chopped and pre-shredded as possible.

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At best, the pre-chopped and pre-shredded foods become ingredients for a simple meal. At worst, I dip them in hummus and call it brunch. Yeah, I’m paying more for convenience, but it saves money on ER visits to get things shoved back into socket.

2. Green juices and Meal Replacements

Sometimes you can’t stand long enough to make a meal without passing out. Especially when it’s hot outside and opossums have chewed through the air conditioner wiring. On days like that, or on days when we have to rush out the door, meal replacement shakes and green juices come in handy. They keep my blood sugar from crashing until I can find some real food!

3. A rice cooker

Two rice cookers, in fact, because Target wouldn’t update our registry after people bought from it. Not to worry though, rice cookers come in handy. Not only can you make some perfect rice, there are plenty of other recipes you can try in them too!

4. A Keurig

Guess how many coffee making gadgets we have in our kitchen. Go ahead. I’ll wait.

If you guessed 10+, you’re correct. My husband and grandpa are coffee addicts, and my husband has tried just about every way to brew coffee that he could find. Me? I stick to my Keurig. Since I can’t have too much caffeine, I mostly use it to make tea and hot chocolate.

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A hot drink in 90 seconds? That’s what I’m talking about. Even I can handle that. (My Keurig was a gift from my mom and is probably one of the best kitchen gifts I’ve ever gotten.)

5. A Filter Pitcher

Better for the environment than bottled water, this is also a lot more convenient. No more late night runs for bottled water because your tap water tastes gross. No more wishing you had remembered to put your glass water bottle in the fridge after filling it, instead of setting it beside you and forgetting about it.

I have a lot more gadgets in my kitchen, but these are my top five. What’s in your kitchen?

So When Am I Having Kids?

When you announce your engagement, everyone’s mind turns to one thing, and one thing only. Sure, you’ll get a few questions about your registry, the wedding, and how he proposed, but most people are dying to ask the bigger question. So, when are you having kids?

Not only is it a loaded question, but depending on your answer, it’s an awkward conversation for everyone involved. When I tell people I’m not having kids, suddenly the peaceful conversation becomes an interrogation. I usually mumble something about not being ready for that step and extricate myself from the situation. But what I wish I could say is…

10. I Can Barely Even Dress Myself.

Look, when you have kids you have to know how to dress them. Sure, sometimes I pull out all the stops and look stylish, but more often than not I’m inappropriately dressed for the weather.

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It’s 90 degrees outside, but Mother Nature can’t tell me what to do. I’m going to wear pants until I pass out! Which I will because my body sucks at temperature regulation.

9. I Hate Homework.

I’m pretty sure part of having a kid is making sure they turn their homework in on time. Considering that I made it several years of school without turning in a single piece of work actually done at home, I’m not a great role model for this.

8. The Dog Hates Children.

He was here first, kids…

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He’s old and set in his ways. He likes to bite children. Children don’t like to be bitten. It’s not a winning combination.

7. Puke Grosses Me Out.

I still can’t see someone puke without becoming a vomiting mess myself. I’ve been told it’s different when it’s your own kid, but I’m not exactly ready to test that hypothesis.

6. I Eat Like a Toddler.

How am I supposed to introduce my kids to a healthy diet? Sure, I don’t eat many starches and I’ve tried just about every trendy diet for stomach issues and autoimmune disorders ever, but when it comes down to it, I’m still the pre-teen that literally caused an oven explosion.

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Last time I was left in charge of children, I fed them junk food until they told their parents that they wanted to come live with me. There’s something about a steady diet of macaroni, icees, and cupcakes that wins a child’s heart. However, it also winds them up and leaves them crashing from simple sugars, so I appreciate the ability to give them back to their parents.

6. I Suck at Being Encouraging.

One of the best things about my parents is the way they always encouraged me to follow my dreams, even when my dreams were kind of silly. For example, when I was in preschool and wanted to be a garbage collector, my parents told me that I would be the best garbage collector ever.

Now, encouraging your kids is so important. Seriously! Which is a good reason for me not to try to raise any. I try, I really do. But when people want encouragement, my brain freezes. I wind up patting people on the back awkwardly and nodding in what I hope is a sympathetic manner. Even if I don’t need to be sympathetic.

5. I’m Scared I’ll Mess Up.

Babies are so fragile. Especially if they’re birthed by someone who has a hereditary genetic disorder. Just thinking about all the injuries my brother and I had as children, despite being closely watched and practically wrapped in bubble wrap, scares me.

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There’s so much that could go wrong, and as I learned with Fuzzy, if anything did go wrong, even the smallest thing, it would crush me. I’m the type of person who takes her cats for massages when they’re stressed. Can you imagine me as a parent??

4. I’m a Terrible Disciplinarian.

I’ve worked with kids several times, and let me tell you, they love me. You wanna know why they love me? Because I can’t bring myself to punish them. Sure, I can sometimes ward off bad behavior with my scary “Teacher Face,” which I inherited from my mom. But if pre-emptive measures don’t work? I got nothing.

3. I Can’t Even Have Them.

I’m a little bitter about this. But I have come to terms with it, using humor to hide any anger I may still have about the issues. However, the truth of the matter is, between my reproductive issues and my Ehlers Danlos, I really can’t have kids.

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My family has had a lot of issues with having babies. My mom and grandma struggled to have kids and they’ve passed their issues down. It’s not exactly the kind of information I pass around to people casually asking about my life plan. But it’s one of the most serious reasons I’m not having kids.

2. Medical Bills.

Having kids is expensive. So are the thousands of medical bills I rack up every year. When I think of all the medical bills I would rack up while trying to have kids, it makes me shudder. When I think about the medical bills my kids would rack up if I passed my illness down? That’s just sad.

1. I’m Too Sick.

There are some amazing spoonie mamas out there. I respect and admire you so much! You work so hard to take care of both your kids and your health. It’s like having two full time jobs you can never get a break from. You’re practically Super Mom!

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As for me? Until I get some proper pain management and a little help for the constant dizziness, I don’t have the resources to give a child what they deserve. Add in the guilt I would feel if I passed any of my illnesses down to my kid, and it’s just not the right choice for me and my husband.

That doesn’t mean it’s not right for everyone, and please don’t be like some people I’ve encountered who assume I’m a kid-hating curmudgeon! Just think before the next time you ask someone when they’re planning on having kids. Unless you know them well, you never know what kind of can of worms you are opening!