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.

Illness, Funerals, and Family.

Like me, my husband’s grandmother was chronically ill. We bonded over the treatments we had tried, medications we had hated, and the general awesome realization that us spoonies get when we find someone else who knows what we’re going through.

When we got the call last Friday that J’s grandma had two hours to two days to live, we got out of bed, packed our bags, and headed out. I didn’t do a very good job packing because I’m still fighting the cymbalta sleeps, and our car had issues because neither of us had thought to check the coolant levels before we headed out. Still, we got there in time to talk with his grandma before she fell asleep and never woke up.

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So, here’s the thing. I know a lot of times us chronically ill people get into a pretty negative mindset, and we have every right to. But what happens when we have to be strong, not for ourselves for once, but for someone we care about?

This week I found that out. I survived off snack foods because I didn’t want to bother anyone who was grieving about the fact that I couldn’t eat their comfort foods. I played with kids and distracted them to the point that I literally thought I was going to fall where I stood.

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I hugged, I passed out programs, braided hair, served food, and in the end? I think J’s grandma would have been proud of me. Sure, I’m not ready to raise four kids, get a master’s degree, and teach college level history courses. In fact, I’ve spent the last two days in bed because I physically exhausted myself and only kept going through sheer stubbornness. (Stubbornness and a lot of ibuprofen. Too much ibuprofen. My stomach is killing me now. Don’t take as much ibuprofen as I did. Ever.)

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Anyway. I guess the point is, sometimes I’m guilty of getting into an unhealthy mindset. The “I’m sick, I can’t do this, I won’t try, I can be as cranky as I like because I’m sick forever.” I’m not saying everyone gets into this mindset, or even most people, but I know that I do.

So I’m going to work harder on being positive, helping out my husband emotionally, and being emotionally available for those I love. No more “a headache? Wait until you’ve had a three week migraine and THEN get back to me.” No more “Wah Wah you have a cold. I’ve popped my knee out of socket three times today. Who has it worse?”

Relationships take work on both sides. Sometimes I’ll just have to accept that I’ll be on my feet for two hours because I’m passing out programs at a funeral. And I’ll just be grateful that I have so many people who want me to be part of their life: the good parts and the bad.

and I’ll spend the next week in bed.

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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?

Less Than Glamorous.

Time for another Mostly Wordless Wednesday! Today’s photo is me, sitting in bed, using my TENS machine. Although I’m sometimes a beauty blogger, a lot of the makeup I do is to hide the fact that I constantly look tired. The whole tired thing is, of course, a side effect of being chronically ill. It’s hard to sleep when your knees have dislocated earlier in the day and are now throbbing with even the lightest touch. If my knees could hover, it would be a perfect world.

Unfortunately, they can’t,  so a TENS unit is the next best thing. If you’re unfamiliar with it, a TENS unit uses electrical stimulation to stop your nerves from sending pain signals to your brain. That’s pretty cool technology, and it’s pretty helpful when you’re debating if taking another advil will definitely cause stomach ulcers, or just probably.

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Many companies that make TENS units also make electric pulse massagers, which massage the muscle using electrical stimulation and reduce inflammation and prevent atrophy. A lot of chronically ill people, myself included, actually use both machines! They take a little getting used to, because the feeling of using them the first time can be pretty weird! After a while though, they’re fantastic. There are days I actually rush home to put my TENS unit on my legs!

Anyway- this has been a glance into the less glamorous side of my life. Stuff like this is what I’m doing when I’m not reviewing makeup or traveling to exotic locales, haha!

Very Aware of EDS for Our Awareness Month

Hi guys! This week there won’t be much new stuff on the blog. My family got rear-ended by a distracted driver, and although luckily all our injuries are minor, mom and I took the brunt of the pain from the crash. We spent last night at the ER after I took an ambulance ride to the local trauma hospital- seriously, we were there maybe six or seven hours. Then today mom wound up at the ER for her own injuries. We’re all gonna be okay, but since it’s Ehlers Danlos Awareness Month, I thought I would talk about a few Ehlers Danlos things that are important when you’re in a trauma situation!

Image With Ehlers Danlos, our faulty connective tissue can mean any trauma- even the kind normal people would be able to walk away from unscathed- can quickly become major. Hypermobility in the neck means that whiplash will be worse, and although neck trauma is always considered an emergency, neck trauma with EDS is an emergency that will have four or five ER doctors looking at your before you’ve even made it to a room, especially if you’re at a teaching hospital that specializes in trauma. However, if you’re lucky enough to get an ER doc who actually knows about Ehlers Danlos, like I was, it’s going to be the best ER trip of your life. (Well, as far as ER trips can go.)

Since you have a connective tissue disorder, you’re going to have a lot more tests done than a normal person. There were other trauma patients at the hospital, and they all got out sooner than I did. An MRI, three CT scans, X-Rays, and more people poking me and asking questions than I can remember, and it still took six hours before they would even un-immobilize me. 

However, everyone wanted to make me comfortable, which was an experience I have never had at an ER before. The doctor wrote up zofran and dilaudid before even looking at me, and once I had a burst vein from trauma complications and a faulty IV (hint: if you think your shoulder is dislocating, tell a doctor before they try to use the vein in that arm. It will end in nothing but tragedy), he had me up in warm compresses and IV medication in the other arm before I even knew what was going on. 

Everything turned out to be minor- I’ll recover from the head and neck trauma, I need to keep an eye on my rib and liver area, and the huge swollen arm on my left side should return to normal once my body slowly works the stuff out of my system.

The worst part is, if you have EDS, your worries don’t end once you walk out of the ER. You’re given a list of signs and symptoms that should immediately send you back to the ER, a list to call your doctor about, a stern warning to follow up with your doctor no matter what, and you’re rolled out with an Aspen Vista cervical collar still on. Compared to my ER visits before I knew I had a connective tissue disorder, the amount of follow up necessary is incredible! It’s enough to make me more than a little paranoid.

And with that, is my ribcage looking a little swollen dangerously near my liver, anyone? Haha- just kidding. Probably.

One Year Anniversary.

Tomorrow is the one year anniversary of my thyroid surgery. I’ve come a long way since that surgery.

When I gained forty pounds in less than a month and started having trouble breathing or swallowing, the trail led to my thyroid. We’d let a (huge) lump on it go unattended for years, thanks to some incompetent doctors and my unwillingness to have yet another painful biopsy. After finally seeing a competent ENT, I had hope that all the health problems that had plagued me my entire life came down to this useless little organ about to be chopped out of my neck. In fact, I took a pre-surgery selfie just so I could see my progress over the next year. I was expecting my hair to stop falling out, the weight to fall off, and the strange aches and pains that traced back to childhood to disappear. See how smug I look, despite it being 4 am? That’s the face of someone who thinks all their problems have just been solved.

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After surgery, I knew something was a little off. I was in so much pain and nausea, I seriously thought the world was ending. In fact, the recovery room staff took away the little button I could use to give myself morphine because I had pumped so much of into myself. The doctor had rather optimistically told me I could start many of my old activities again a week after surgery. That didn’t happen. A week after surgery, I was laying in bed with vertigo. I couldn’t stand up without falling over like someone experiencing their first time at sea during a very windy day.

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After a while, my ENT got my levothyroxine dose adjusted, and I was still as sick as I had ever been. Armed with a referral to a rheumatologist, I headed out to find out what had really been plaguing me all these years. The first rheumatologist was a bust, but my second rheumatologist was excellent. I was diagnosed with Ehlers Danlos Syndrome, and shipped off to a cardiologist to find out why I was dizzy and had been passing out all the time.

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The diagnosis there was dysautonomia- POTS and NCS, to be specific. The cardiologist got me started on treatment, as did my rheumatologist. So, one year after surgery, and I’m feeling… better. I’m not healthy, by any means. Some days I can’t get out of bed thanks to vertigo and syncope. Some months my joints go out more than I do. But progress is progress, and any progress is good.

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If I put the pictures side by side, I can see the difference a year makes. Yes, part of it is because I finally learned to do my brows. The rest of it is just my body finally getting the help it needs.

I can’t make a good speech about how eating right for a year and working out can change your life. That’s not what happened for me, and the difference isn’t dramatic enough for that anyway. Plus, I still can’t resist eating a whole tub of Udi’s brownies at one time.

Is it usual to feel this nostalgic about your thyroid surgery? I’m thinking I’m strange for missing that tiny little organ and my pre-Ehlers Danlos- scarred neck.

 

Chronic Counseling

Doctors often suggest counseling as a way to treat chronic illness. It’s so frustrating to be told your very real symptoms are all in your head. We hear it time and time again, along with “change your diet and exercise,” “have you considered yoga?” and worst, “maybe you’re just lazy. ” Although diet changes, yoga, and counseling can help individual cases, they’re not a cure, and the pressure many of us feel to get “well” can keep us from wanting to try things- and fail. But the truth is, chronic illness can take a toll on your mental health. That doesn’t mean your symptoms are all in your head, or that mental illness shouldn’t be treated with care. For years, I refused to go to counseling. I knew my symptoms were physical, but for years I was told my syncope and rapid pulse were panic attacks. I didn’t need doctors, I needed a psychiatrist. Finally, I was diagnosed. But after being born sick, living differently than kids my age, and being told I was making it all up by every doctor I had seen? I was angry, confused, and scared. These were all emotions I had every right to feel, but they were also emotions I needed to work through. Finally, I started talking to a counselor about my chronic illnesses.

Although I don’t feel any better physically, seeking support for my chronic illnesses has been one of the best choices I’ve ever made. Taking time to find the right counselor made all the difference, as I couldn’t share my concerns with someone that didn’t make me feel comfortable. Once I found the right guy? He became one of the best parts of my medical team. He’s not afraid to advocate for me, help me find resources, and most importantly, he provides thoughtful exercises and feedback on my experiences as a chronically ill young adult.

Counseling isn’t for everyone, especially as much as it gets shoved in our faces as a way to cure us. It’s easy to believe it can’t help. I know I believed that counseling was a waste of time for years.

Support groups and counseling can be for you though, as long as you find the right ones. Don’t be afraid to see several counselors until you find the right one. And remember, you’re not making your illnesses up. But you can find someone who will support you through the emotional fallout.