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.

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Juices: my latest obsession.

I have to drink a lot of liquid every day. I’m pretty good about it, really! I have about two liters of water a day, sometimes more if I’m feeling especially POTSie. The only problem I have is my undying hatred for plain water. I just don’t like it! I drink it, sure, but I’m always looking for some other ways to get my liquid intake up.

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I allow myself one glass of earl grey or green tea a day, because I can’t handle very much caffeine. Sometimes I add in an herbal tea, like Chamomint Moon by Higgins and Burke. It’s a nice change from plain water, and I’ve already talked about how warm beverages make me concentrate better. (It’s a mental thing, I know.)

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Lately though? I’m loving these fresh juices from Grocery Bar. This week, lemonade with cucumber was on sale for two dollars, as was watermelon juice. That’s a great price for fresh, cold-pressed juices, so I picked a few up. They were awesome, and I might have replaced breakfast with them a few times when my stomach just wasn’t feeling up to real food. After I finished them, my husband and I headed back to pick up a few more while they were still on sale.

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While we were there, I saw the Juice of the Day and knew I had to try it out. It was a mix of carrot, apple, orange, and ginger. I’ve been a fan of carrot-apple juice for years, so this was right up my alley. It was $7, which still fit in my budget, so that was pretty neat.

I love the packaging of these juices. The glass jars and minimalist logo are absolutely adorable, and I’ve repurposed them in my house as flower vases. A single long stem daisy in each of the bottles in a row in the window is a cute look and a great way for me to recycle!

If you’re in the Chattanooga area, and you want fresh juice, check out The Grocery Bar! I’m also looking for the guy who does juice from a bicycle, which seems like a really cool concept even if I can’t remember the name of his business right now.

Since I hate smoothies, juice is the next best thing when it comes to nutrients! I’m loving fresh juice as a water alternative, and just in general. Who’s with me??

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!

Dating While Sick!

I get asked for relationship advice a lot. I guess that’s par for the course, as my husband and I were the first couple in our group to get engaged, move in together, and get married.

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Interestingly, I also get asked a lot for dating and relationship advice by other spoonies. I guess that makes sense, too, since I managed to snag my adorable husband while being blatantly, unhideably sick.

It didn’t just happen, though. It took a lot of work and self confidence to get to the point where I was able to date as a sick person. One mistake I had made in earlier relationships, before a virus made my illnesses unable to be disguised, was not disclosing my illness at the beginning of the relationship.

I know, you’re thinking, “but if I tell them I’m sick, it will scare them off!” But really, if it does, is that the kind of person- male or female- that you want to be with? When I didn’t disclose that I was ill, I spent a lot of time trying to hide my symptoms. “Faking well” put a lot of strain on my relationship, and on my body as well. As the stress of faking well got to me, my symptoms got worse. I started making excuses for not being able to talk or hang out, and they took the excuses to mean that I was bored of them.

In the end, I had to break off several relationships because people couldn’t accommodate my “sudden” illness or thought I was faking. It wasn’t healthy for me or for the poor boys I was dating!

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Other than disclosure, I think it’s especially important for spoonies not to throw everything they have into a relationship. It was always tempting for me, having lost so many friends and hobbies, to become too into a relationship and lose my sense of self.

In illness, it’s important to maintain your sense of self. Because your body has betrayed you, you might feel- like I did- that you’re unattractive, unworthy of love, and uninteresting. Thanks to these misconceptions about myself, I found myself clinging to any scraps of attention someone would throw to me. That’s not a healthy way to have a relationship, and clinging to scraps of love and affection can make you feel even worse about yourself.

Once I started going to counseling, accepting my illness and my body, and finding things I could still do that I was interested in, my relationships thrived. I made friends online and in person who were understanding, and I met my now husband. Because I had a life separate from my husband, our relationship didn’t feel rushed or forced.

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Of course, your mileage may vary. Everyone is different in their relationships and their personalities. However, these were important things for me when I was dating!

Now, I’m determined to make our marriage last. The statistics for marriages where one partner is chronically ill are grim, but they’re just that: statistics. Although they may show a trend, they’re not a death sentence for my own marriage. After all, this may seem impossible, but so did dating!

Sick Girl Chic

Guess who drove three hours to get a prescription for Cymbalta and a referral to a genetics clinic?? This girl!

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Luckily, a genetics clinic is exactly what I need so I’m not actually all that upset. Plus I got to spend some quality time on the road with my dad, who I don’t see very much anymore. Which is sad because he’s awesome.

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Other than all the medical stuff that went down yesterday, I decided to wear my hair curly. My hair is naturally wavy and is actually a pain to straighten, but since straight hair is generally in style, that’s what I do.

However, I knew I would be on the go all day and I didn’t really want any kind of high maintenance hairstyle. So I used a 1″ flat iron to curl my naturally voluminous hair and then ran some gel through it before sleeping on it.

The result was some pretty cute girls. I think I’m rocking the sick girl chic, don’t you?

Stretchy tee shirt so my skin isn’t irritated. Unbuttoned flannel because doctors offices are cold. Begging style shorts are both cute and comfy. Minimal makeup screams “I woke up like this,” because I practically did.

What’s your lazy day look?

Chronic Community

There’s not much good about being diagnosed with multiple chronic illnesses. In fact, this time two years ago, I would have been hard-pressed to find anything good about it at all. What changed in those two years, you ask? Did I become a masochist?

Hardly.

After my thyroid surgery, I was looking up stories of other patients. During my searches, I found out about The Spoon Theory, and people who identify with it. Becoming a “spoonie,” meaning someone who identified with The Spoon Theory, was a way to open up a whole community of people who actually understood what I was going through!

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Above is a prize I won in a spoonie giveaway. It’s a bumper sticker, shaped like a spoon, that says “Spoonie Pride.” Even better, it’s in the awareness colors for my most irritating illness, Ehlers Danlos!

Finding out about giveaways, shops, and businesses run by people who I could identify with was huge. Though I still felt lost after having to completely change my life plan due to progressive illnesses I had been struggling with since childhood, I saw sick people being normal! I saw sick people having fun! I saw sick people complaining about things that all my healthy friends and family just didn’t understand!

Although I don’t totally identify with The Spoon Theory, I think it’s really important. It’s important to have a support network. It’s important to see other people with your illness succeeding, or failing, or just living life. I generally refer to myself as a spoonie when I’m talking to other people who suffer from chronic pain and illness, because it’s way easier than listing out the ways I’m chronically ill and in pain.

As I head off to Vanderbilt Hospital today, in an attempt to finally get some real help for my Ehlers Danlos, POTS, and all the things that stem from them, I’m happy I found a community. Even if being sick sucks, all the friends I’ve made and all the support I’ve been given has been spectacular!

Hopefully I will get some answers and treatment today! Either way, I will be updating my blog with what went on at Vanderbilt!

The Skin Post.

I’ve been blessed with good skin this far in life. It’s a side effect of my genetic disorder, and it’s the only acceptable symptom of it. I have zero acne, my pores are minimal, my skin is constantly baby soft. If you ignore the easy bruising, skin tearing, and the horrific scarring from even the slightest touch, then you’d think I was pretty lucky.

However, I want to keep my skin healthy. Several of my friends and family members have had skin cancer removed, and I have had a few bad sunburns to my name. Skin tearing and scarring have affected my skin, and I have some pretty rough looking under-eye bags. Since I’ve recently entered my twenties (okay, almost two years ago, but shh), I’ve been trying to take better care of my skin. Here’s what I have learned.

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1. Use Sunscreen.

Whether it’s a primer, BB cream, moisturizer, or foundation, I make sure I never leave the house without some sunscreen on my face. In the summer, I generally use a BB cream with at least SPF 30. In the winter, I can knock it down to an SPF 15, but it depends on your climate and weather. Even if you’re just running a few quick errands, it’s really better safe than sorry when it comes to your skin and the sun.

2. Wash Your Face (And Moisturize).

I admit, I didn’t do this when I was a teen. It wasn’t until I went off to college that I got in the habit of washing my face regularly. This is the one area of my beauty regimen where I will really shell out, other than my hair. Using a better face wash and moisturizer regularly can really make the difference, especially during seasonal changes when your skin can get dry. I really like Philosophy’s Hope in a Jar moisturizer, and it’s what I use regularly. I also use an intense moisturizer on my scars and stretchmarks to keep them from tearing, but that’s probably not necessary for most people. Find something you like, and stick to it.

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3. Eat and Drink Well!

I’m probably not the best person to talk about this, because I definitely had gluten-free macaroni with bacon and extra cheese for lunch today. But, I drink a lot of water- thanks POTS- and I’ve definitely noticed that my skin looks better when I keep my liquid intake up. Water is great for your skin, but it can be hard to drink enough, so eating lots of fresh fruit and veggies can get water AND vitamins in you. It’s a win-win, especially while it’s still produce season. I love getting food from local farmer’s markets, especially meats, because I’m less likely to break out in weird dermatitis from preservatives or chemicals.

There’s a million more skincare tips out there, but these three are the basis. What’s your go-to skin routine?