Waiting Around (Again)

Credit: flickr user chiaralily (Creative Commons)

Credit: flickr user chiaralily (Creative Commons)

This is part of the synchroblog on waiting, to celebrate the release of Those Who Wait: Finding God in Disappointment, Doubt and Delay by Tanya Marlow – out now. See more here and link up to the synchroblog here.


 

The other day, I sighed and told my sister, “Things are going too well lately.”

Which sounds like a stupid thing to complain about (and I might have a skewed view of what “well” looks like), but she knew what I meant.

Every time things start looking up, something huge happens and I come crashing back down.

I’m always waiting for something to change, even when I really don’t want it to.

It feels like I’m sitting at the bottom of the mountain, waiting for my turn to start climbing again. Or I’m near the top of the mountain, waiting to fall again.

Both times are going to come. They always do.

I’ve been in a nonstop dance of grieving and rebuilding since . . . well, I don’t remember ever not doing this.

Maybe that makes me sound pessimistic. I promise I’m not.

Actually, I’m obnoxiously optimistic. It can be a problem.

Years ago, someone close to me was frustrated with their life and said something I thought was hilarious. “Somehow, everything always works out for you, Kristy.”

They didn’t appreciate it when I started laughing. I was feeling a little bitter that day.

But there’s some truth to that. Eventually, I do tend to right my ship. But there’s a lot of waiting involved before that happens.

I spent my nineteenth birthday in a safe house because I was hiding from a stalker who wanted to kill me. My family waited there for almost a year. We had a roof over us (thanks to a family friend), but we were homeless. Jobless. Friendless.

Six years later, I was married with a newborn. I was back in school, had a good job, and owned my own home. When I was nineteen, and storing my clothes in a black garbage bag, I couldn’t have seen that coming.

And I worked my ass off to keep it all.

About a year after my second daughter was born, I went for a run and started having a lot of knee pain.

I waited through xrays, and MRIs, and years of physical therapy as the issue moved beyond my knee, into my other joints, and began interfering with my life.

Turns out, the problem is in my DNA. It can’t be fixed. The best I can hope for is to address each individual issue as it pops up. The problem is, there aren’t any good treatments for the issues that pop up for me.

I quit my job a few years ago because of my health issues. And I went right back into that familiar waiting period. I’m still there.

I keep telling people I’m just waiting until technology catches up. In a few years, I’ll be able to 3D print new joints and ligaments or something. Some awesome new migraine treatment will come out. I won’t be like this forever.

It’s funny. Not ha-ha funny, unless you’re like me and you ha-ha at inappropriate things all the time, but interesting funny. While I’ve been in a waiting period because of my shitty joints, I came out of a different waiting period. I’ve been waiting for years to have the time and the mental energy to write. I’d tried to pull it off while working, having babies, and going to school. I was never able to prioritize it while everything else was going on. It felt selfish.

My body being all crazy forced me to stop prioritizing my career and education. So what was I going to do with all this free time? I started a blog.

Yes, I’m in a lot of pain some days. Yes, my annoying body gets in the way of my goals frequently. But if my body hadn’t forced me to slow down, I wouldn’t be blogging right now. I wouldn’t have met some of the awesome people I’ve met through this.

Slowing down gave me the time and the mental space needed to write a book. I haven’t been idle while waiting. I’ve accomplished a lot on the days I’ve been able to accomplish anything.

I’m waiting for my health to improve, but I’ve stopped waiting to fulfill the goal I set for myself when I was eight years old and told everyone I was going to write books when I grew up.

I think that’s how life goes. I think our periods of waiting must hit us like waves. Sometimes the end of one wave is the beginning of another. And now I’ve got “Closing Time” stuck in my head.

I’ve been feeling restless lately. It feels like things are going to change again soon. Maybe that change will be positive. Maybe not.

Maybe I’m waiting for the other shoe to drop.

Maybe I’m waiting for a miracle joint cure.

Maybe I’m not waiting on what I think I am. Maybe it’s OK not to know.

It’s hard, but I’m trying to just roll with it. Somehow, everything always works out for me.

What to Expect When Your Dr. Suspects an Invisible Illness

Congratulations! You’ve just been diagnosed with an chronic invisible illness.

The First Days

During the first few days after your diagnosis, you can expect to experience feelings that alternate between relief (at least now you know what’s wrong) and rage (“Why me and not that bees-itch who cut me off in the Wal-Mart parking lot?”)

When you’re ready to share the news with your friends and family, most of them will listen attentively. They likely already know that something hasn’t been quite right with you, and they want to know what your doctor has said. Some of them will even go home and Google your condition. Some of those people will see the Wikipedia entry lists 20 possible symptoms and, even though you only have to meet 5 of the symptoms, will trust Dr. Wikipedia over your medical-school-educated doctor and declare your doctor is wrong because your illness doesn’t tick all 20 boxes.

A few people will listen to the information that your doctor has shared with you and say, “That’s what she said you have? No, that can’t be right. My step-uncle’s cousin’s soccer coach has that and he’s an overweight middle-aged man. You don’t look like an overweight middle-aged man. That diagnosis can’t be right.” (Unless, of course, you are an overweight middle-aged man. In that case, you’ll be compared to a picture they saw once of a starving refugee from more than 50 years ago. Now, that guy looked sick.)

The First Few Months

At first, you’ll approach your doctor’s appointments with optimism. Each new specialist you see will say things like, “We can take care of that!” and “Oh, there are lots of things we can try.”

Slowly, they’ll begin to grow frustrated–not at you, but with your condition. See, doctors like to heal people and someone with a chronic illness doesn’t really heal.

You and your doctors will begin to accept that, while some of your symptoms are treatable, the underlying condition, and some of the complications that come with it, is here to stay.

During this time, expect your friends and family members to ask, “Are you better yet?” at every social function. Keep in mind, the only answer most of them will accept is something positive, like, “Gettin’ there!” or “I just started a new treatment and I think it’s working!” or “I’ve miraculously been healed of my chronic illness and my vision has been restored to 20/20 and my toe nails are now self-clipping!”

People will respond favorably to any of those responses. What they will not respond well to is, “No, I’m not feeling well at all.” or “Not yet. My doctor has me trying some things, but they aren’t working.”

If you reply with either of those statements, expect to hear, “Oh, but you look great!”

Keep in mind, they mostly mean it as a compliment. Maybe they mean, “You look great for someone who is incredibly frustrated with the lack of medical treatments for your condition.” or “You look great for someone who is so obviously struggling with the physical and emotional burden of your condition.”

However, what you’ll hear is, “You look great, so you obviously have nothing wrong with you. Sick people don’t look great. Stop whining and making me uncomfortable. Sick people, ew.”

Sometimes you might have to cancel plans. You’ll feel torn between attending some functions or no functions at all. I mean, Joe will be totally pissed if you attend Sarah’s party but not his because you weren’t feeling well enough that day. Well, Joe’s an asshole. Forget Joe.

The First Few Years

You will enter a grieving stage at some point. We all expect our lives to go a certain way, and when we lose control of part of that decision-making process, that’s a real loss. Grieving is normal. It’s healthy.

You may join a support group, which allows you to talk to other people who understand what you’re going through. You may then choose to leave the support group because some people only ever complain about your shared illness and it’s harshing your buzz.

You may be tempted to allow your identity to become wrapped up in your illness. Try to discuss topics that aren’t related to your invisible illness when you’re with family and friends. It’s easy to lose perspective when you are constantly dealing with a chronic condition, but remember that life does go on, for you and for everyone else.

It’s normal to be angry and even jealous of people who don’t have your condition. You might idealize their lives, but keep in mind, everyone has their own struggles. Your struggle involves an invisible chronic illness. Their struggle might be horrible halitosis and an eye that winks uncontrollably, but only at creepy men on the street.

You’ll have conversations that go:

Friend: “Well, you’re well enough to be out of bed. Why don’t you do something productive?”

You: “You have time to binge-watch Cupcake Wars. Why don’t you learn calculus instead?”

Friend: “What I do with my time is none of your business!”

You: -_-

Friend: “What?”

Your friends and family are likely bored with your chronic illness by now. They don’t understand why your doctors can’t give you a magical pill that solves all of your problems. You might be tempted to tell them to check their wellness privilege. (Actually, go ahead and do that.) It’s a good idea to give short, vague replies to these people when they ask about your health. It’s often not worth the time and effort it takes to explain all of the hundreds of things you and your doctors have tried already.

Inevitably, someone will pop up with a miracle mushroom tea (I have seen the mushroom. I still have nightmares about that mushroom.) that cured their husband’s aunt’s neighbor’s arthritis, and how different could your unique condition be from the kind of arthritis that sets in with old age? Basically, all pain is just old-age arthritis, right?

These people mean well, but it’s okay to be frustrated with them. It’s okay to say, “There is no way in hell I’m drinking your magic mushroom tea.” It’s also okay to say, “Oh, thank you for the mushroom. I’ll let you know if it works,” and then bury the mushroom deep in the woods where it will never, ever find you.

You may find that a few friends and family members aren’t bored of your illness and have formed a solid support system for you. You’re probably so grateful that you want to enter into a polygamous arrangement with these friends. Don’t tell them that though. It’ll scare them off.

Conclusion

You can expect some things in your life to change. You’ll have to learn as much as you can about your condition and you’ll have to learn how to manage some of the people in your life.

However, not everything changes just because you have a label for your invisible illness. You’re still you.

I’m Not Special (and neither are you)

I’m not special.

Some people who know me might think that’s a nutty statement. I may not be better than anyone else, but I’m obviously unique, right? Who else is the daughter of a man who was struck by lightning, went on to help hand dig her family’s well, had a pet raccoon, survived a church-stalker who wanted to kill her, and did it all with a rare genetic disorder?

Now, I’m not saying there’s nothing a little off kilter about me, because there totally is. But, there’s nothing about me that hasn’t shown up in some other combination of traits and experiences in other people. Beyond that, even if I’ve experienced some things that most people haven’t, there’s absolutely nothing unique about my reaction to those events.

Love is love. Disappointment is disappointment. Grief is grief.

I was in a funk last Sunday. For the most part, I just sort of drift through life, feeling fine. I don’t sit around all day thinking about how life done me wrong or anything like that. But, every once in a while something happens and it reminds me of something I’ve experienced before and it just suffocates me for a little while. When that happens, I get this crushing sense of loneliness along with the sadness or anger that rears up. It feels like nobody could possibly understand what I feel in those moments.

Which is such bullshit.

Because loss is loss. Pain is pain.

There are some emotional reactions that are nearly universal. In some ways, it almost doesn’t matter what a person has lost or what’s hurt them, because we tend to react in similar ways. Whatever a person has been through might be unique to them, but the idea that any of us are alone in our pain is wrong.

When I was 19 (a year after all that stalking stuff had happened), I met a woman who’d survived a Holocaust work camp. I read her memoir, and if I happened to see her over at my dad’s church, I’d pop in and talk to her for a while.

You’re probably thinking I had this huge epiphany and realized my life hadn’t been so bad, after all. I mean, how can you compare living in a work camp to being stalked by a Grizzly Adams look-a-like? Well, you can’t. You can’t compare pain and loss like that.

What I realized was I wasn’t alone. I wasn’t the only girl who’d been separated from her home. I wasn’t the only girl who’d lived through fearful, sleepless nights. I never talked to this woman about my own issues. It was still too new of an experience, and I never talked about it back then. It was enough for me to know at least one other person out there “got it”.

A little while later, I met a woman who had lost her parents. My parents were still alive, but we understood one another because we both understood loss. We understood that some days it hits you hard, out of the blue, and squeezes your chest. We understood the pressure people who haven’t experienced a traumatic loss can put on those who have to “buck up” or be inspirational for them. We understood that sometimes you just pretend to be OK. We had two totally different sets of experiences, but the end result of our unique losses was so very much the same.

It’s tempting to think nobody else understands us. That we’re such complicated creatures that nobody could possibly solve our emotional Rubik’s cube. But, really, people aren’t all that complicated.

I’ve met a lot of people since I was 19. Some of them have lived through pain and loss of all sorts of different varieties. The one beautiful thing I’ve found in all of that is we’ve all connected with one another. Someone grew up with abusive parents. Someone has a chronic illness. Someone was severely bullied. Someone lost a parent. Someone lost a child. Someone lost a spouse. Someone lost a church. All different. All painful.

Do you ever get jealous of people who haven’t gone through an ordeal like you have? We understand that.

Do you ever feel guilty because you think maybe, just maybe, if you’d done something differently everything would be different? We understand that.

Do you ever feel alone in your grief, like nobody around you gets it? We understand that.

If you’ve experienced a serious loss, you’re not alone. I know how tempting it is to believe you are, but you aren’t.

You are not alone. You belong to us.

Where I Go When I Disappear

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Original photo credit: Daniel Oines

Sometimes I drop off the face of the Earth for a few days. I might make plans with someone, but my husband shows up without me with a vague, “she’s sick” comment. Sometimes I receive “Are you ignoring me?” or “Are you alive?” text or social media messages because I haven’t replied in a couple of days.

I just pulled another disappearing act, so instead of being mysterious (though, I do enjoy being kind of mysterious), here’s what I’ve been up to the last couple of days.

(Times are approximate. Everything else is completely accurate.)

Wednesday, 11 P.M. – Start to feel a pinch in my neck. A muscle spasm is starting up. Take a muscle relaxer and my daily anti-headache medicine that’s supposed to prevent killer headaches and go to bed.

Thursday, 6:30 A.M. – I reach over to shut off the alarm clock and go, “ohhhhhh SHIT!” because that hurt. Muscle spasm at the base of my skull? Check. A headache that’s 10x worse than any migraine I’ve ever had? Check. That anti-headache medicine is such bullshit…

Thursday, 6:35 A.M. – Roll out of bed. Wake up the girls.

Thursday, 6:45 A.M. – Sit on the couch with my head in my hands, seconds away from screaming at my kids, “Get yourselves ready for school! Why do I need to tell you to get dressed every morning?!”

Thursday, 6:50 A.M. – I go ahead and yell at the kid who still isn’t dressed yet.

Thursday, 7:10 A.M. – Take a muscle relaxer. I couldn’t take it until the kids were close to being out the door because it knocks me out.

Thursday, 7:20 A.M. – Imagine small men inside my head pushing my eyeballs out of my skull… because that’s pretty much what this pressure in my head feels like. Go to bed and pass out.

Thursday, 1:00 P.M. – Wake up and force myself to eat some cereal. Scroll through Facebook and see some interesting topics I want to chime in on, but I don’t comment because my brain is fuzzy. I can’t type… or think… and I’d prefer my friends believe I’m literate. I am a mutant with the worst super power ever.

Thursday, 1:20 P.M. – Feel nauseated. Go pass out again.

Thursday, 6:20 P.M. – Get up and force myself to eat some oatmeal. Notice a FB message from a friend and respond. Talk to my kids about school. Tell my kids to turn their games down.

Thursday, 6:30 P.M.Beg my kids to turn their games down.

Thursday, 6:50 P.M. – Try to stay in the living room with my family. Feel nauseated. Go pass out again.

Thursday, 9:00 P.M. – The vomiting begins. I make it to the bathroom. A victory!

Thursday, 10:00 P.M. – I finally manage to contort my body into a position that doesn’t put pressure on my neck.

Thursday, 10:10 P.M. – “LOL – Nope! You’ve been in bed all day, time for a cramp!” – left hip

Thursday, 11:00 P.M. – There is no such thing as a comfortable position. Consider banging my head into the wall until I pass out.

Thursday, 12:00 A.M. – Wake up again. Roll over and feel a new and totally not improved sensation of pain. Do that whole, “This sucks. This sucks. This sucks,” mantra. Wish I could just cut my thumb off again instead of dealing with this headache.

Friday, 2:00 A.M. – A scared child enters the bedroom. I assure her I’m not dying. I have to haul my ass out of bed and tuck her in to prove this. Act like I’m not in nearly as much pain as I’m in.

Friday, 2:10 A.M. – 4:00 A.M. – Just being restless and not sleeping and wanting to cry but knowing from experience that crying just makes headaches like this way, way worse. So, I lay there and tell myself I’m being a baby until my brain is finally all, “I can’t even handle this anymore, let’s go back to sleep.”

Friday, 6:30 A.M. – Alarm goes off. My headache is worse. I’m optimistic that if I just get another 10 minutes of sleep, I can shake it off. I hit the snooze button.

Friday, 6:40 A.M. – I was wrong. Give the ceiling a dirty look. Sometimes my bedroom ceiling can be really freakin’ smug.

Friday, 6:45 A.M. – Roll out of bed. Walk into the wall on my way down the hall. Wake up the girls. “I will stand here until you get out of bed. I will probably throw up on you if I stand here for very long. I’d get out of bed if I were you.” They get up quickly.

Friday, 7:15 A.M. – Kick my daughter out of the bathroom mid-way through brushing her teeth so I don’t accidentally throw up on her head.

Friday, 7:20 A.M. – Go back to bed. I can’t take any medicine because it’ll just come right back up.

Friday, 10:00 A.M. – Finally decide there’s no way I can make it to the Parent/Teacher Conference today. Tell my husband he has to go by himself.

Friday, 11:00 A.M. – 1:00 P.M. – I keep telling myself, “I will not throw up. I will not throw up,” because for some reason I keep thinking if I will it hard enough, I won’t actually have anything wrong with me. I keep throwing up anyway.

Friday, 12:00 P.M. – The kids are home from school and I’ve made it to the couch. Get tackled by a Kindergartener. Say, “I love you too” instead of, “Oh my God! Stop!” Congratulate myself for that.

Friday, 1:00 P.M. – Lay on the couch while the kids play and my husband goes to the P/T Conference. Feel like a crappy parent.

Friday, 2:00 P.M. – My husband comes home. He asks me something. I turn to reply and that makes me throw up again. At least I’m getting exercise sprinting to the bathroom.

Friday, 2:15 P.M. – Tell my kids I’m proud of their good grades.

Friday, 3:00 P.M. – My husband and the kids have vacated the premises. I am so bored. I AM SOOOO BORED. I hate everyone who can sit up without vomiting right now.

Friday, 3:30 P.M. – Turn on Futurama. I’ve seen all the episodes, so I can close my eyes and listen without missing anything. It’s my go-to headache show.

Friday, 5:00 P.M. – I make myself a piece of toast. It stays down… barely. I lay back down on the couch.

Friday, 6:30 P.M. – I guess I fell asleep. My husband and kids are back.

Friday, 8:00 P.M. – I keep down a 1/2 cup of applesauce.

Friday, 8:15 P.M. – Tell my kids I’m proud of their good grades because I forgot I already told them that.

Friday, 9:00 P.M. – I risk taking another muscle relaxer. It stays down and I pass out on the couch.

Friday, 11:00 P.M. – I’m gross and sweaty and I want to take a shower. I also feel really dizzy and I’m pretty sure I’d fall, so I just stay on the couch.

Saturday, 3:30 A.M. – The pain has moved from the base of my skull to the right side of my neck. It’s actually an improvement because the headache is gone. I usually don’t throw up when it’s just neck pain.

Saturday, 10:00 A.M. – I still have a moderate muscle spasm in my neck. (I call it moderate, compared to the other neck pains and headaches I have. Other people might call it a harbinger of death.)  I get up and take a shower. A lot of things in my neck pop while I wash my hair. It hurts.

Saturday, 10:45 A.M. – Put on clothes. My jeans are too loose. This is why I need three different sizes of pants. This is also why I eat anything I damn well please when I’m felling all right. (You can’t see me, but right now I’m scowling at anyone who might be sitting there judging me for eating my weight in Oreos.)

Saturday, 11:00 A.M. – Oatmeal and coffee. Hallelujah!

Saturday, 11:30 A.M. – Take another muscle relaxer to take the edge off. Force myself to stay awake because I’m really tired of sleeping (see what I did there?) Get caught up on Facebook because if I try to do anything more strenuous than that my headache will come back.

Saturday, 1:00 P.M. – Look at the piles of dishes in the sink. Turning my neck to do that hurt. Dammit.

Saturday, 2:00 P.M. – Decide that washing the dishes isn’t worth a back-to-back headache and write a blog post instead.

Saturday, 2:30 P.M. – Finish up blog post while eating a chicken pot pie. I’m pretty sure this is the best thing I’ve ever eaten.

I was only really down for two days this time, which wasn’t as bad as it could have been. Sometimes I get an extra day or two of this.

I’m not sure how to explain what these headaches are like. I guess the closest would be… imagine the worst muscle spasm you’ve ever had in your neck or back. Add a migraine to that. Now, add several more migraines on top of that. (If you think I’m exaggerating, just keep in mind that when I cut off part of my thumb I was telling other people how to perform first aid on me… and then I hit on the guy who showed up in the ambulance. I’ve had my wisdom teeth removed without effective local anesthesia (thanks again, EDS!) I do get typical migraines sometimes and I’d go to work with them and just power through without any medication. I have an unusually high pain tolerance.)

Right now, I’m still in some extra pain, but I’m conscious, upright, and keeping my pot pie down. (Something, something, small victories.)

Review: Coming Back to God When You Feel Empty

I just read Tanya Marlow’s Coming Back to God When You Feel Empty: Whispers of Restoration From the Book of Ruth. I’d seen a reference to it fly through my feed the other day and I’m so glad I clicked on that link.

Tanya writes about her experiences with Myalgic Encephalomyelitis (ME) while pulling inspiration from the book of Ruth.

I wasn’t expecting something that I could so easily identify with. For the past couple of years, Tanya has been mostly housebound due to Myalgic Encephalomyelitis (ME). Over the past couple of years, I’ve been gone from working full-time to pretty much doing nothing due to issues caused by Ehlers-Danlos Syndrome (EDS).

 

Most of the time I am content, but there are days when the loss hits me afresh, and I grieve the person I used to be.

Tanya Marlow, Coming Back to God When You Feel Empty

 

I appreciate Tanya’s honesty. She expresses many of the same thoughts, fears, and insecurities that I’ve had. It’s nice to read something that was written by someone who “gets it”. Chronic and invisible illnesses are hard for most people to understand and there isn’t much out there that addresses us on a spiritual level.

 

Filling out a form justifying why I was too ill to work felt like begging. I had always prided myself in my ability; now I had to focus on my disability.

Tanya Marlow, Coming Back to God When You Feel Empty

 

This book is useful for those of us who are dealing with life challenges (especially health challenges), but it’s also be beneficial for anyone who wants to better understand the spiritual challenges we deal with.

Right now, Coming Back to God When You Feel Empty is available for free on Thorns and Gold.

What’s Wrong With Me, Anyway?

I make comments (mostly jokes) now and then, but I don’t usually talk about my health that often. At least, for someone who has been so affected by these issues over the past few years, I don’t feel like I talk about it much.

Honestly, I don’t think most people really want to know and I don’t like to impose myself on anyone. It’s complicated and a quick “Oh, I have such-and-such” isn’t going to cut it. I don’t want to waste my time trying to explain this to people who won’t try to understand it. I don’t want people to feel sorry for me or do anything. It’d sure be nice to feel understood though. So, here’s a short (seriously, this is the short version) explanation for anyone who is willing to take a few minutes to try and understand.

What exactly is my problem?

Well, that’s a hard question to answer. The genetic disorder I have is called Ehlers-Danlos Syndrome, but it’s the symptoms of the condition (not the condition itself) that is causing me problems. People can have EDS and not have the same issues I’m having.

I have crappy connective tissue. If you don’t know what that is, it’s what holds your body parts together. It’s in your entire body. The type of connective tissue I have an issue with is found in skin, tendons, ligaments, organs, and blood vessels (among other things). Having a problem with connective tissue means you can have problems in any area of the body where this connective tissue is found.

My biggest problem is my ligaments and tendons don’t work correctly, so my joints can’t stay where they’re supposed to.  For instance, my left shoulder likes to randomly fall out of socket. My most obnoxious issue is that my spine is all sorts of jacked up.

Am I sure I have EDS?

Yes. I’m sure. I went to a geneticist. EDS is a genetic disorder. I have other family members who have now been diagnosed with this, which further verifies my diagnosis. I realize EDS sounds insane (and it is) but there’s no question about whether or not I have it.

So, I have some neck pain…so what?

I don’t care that much about pain. I mean, I was the person flirting with an EMT after I sawed off part of my thumb. (I’m thinking all the blood might have turned him off…) I soldier on through migraines. I had two wisdom teeth pulled without effective anesthesia. I can handle pain.

The problem is when my neck acts up I get headaches that make a migraine feel like a paper cut. (I get migraines as well and these headaches are so. much. worse.) The pressure in my head makes it feel like my eyeball is going to pop out. I can barely stay conscious. I can’t eat. I can’t think straight. I vomit if I sit or stand up. My vision gets blurry sometimes. They typically last for two or three days.

Sometimes, I get these headaches weekly. So, yeah, being completely out of commission for up to 3 days each week is a problem.

Why have I suddenly developed this problem?

It’s not sudden. I’ve been dealing with this stuff my whole life. I just don’t talk about it and it was a lot more manageable until recently. The biggest “new” thing is those headaches are a lot more frequent, more severe, and last longer than they used to.

Why did I stop working?

I was getting too many headaches. I couldn’t be dependable and it was getting almost impossible to focus on my work. The two things that bring on my headaches the most are driving and having to hold my head in one position (things like turning to look at someone while having a conversation or working on a spreadsheet). I went to the theater to see Catching Fire and wound up with a headache for 3 days because we sat slightly off-center in the theater. It’s ridiculous.

Why don’t I just go to the doctor?

Gee, I knew I forgot to do something. /sarcasm

Why don’t I just try *insert treatment here*?

Oh, probably because:

  • I’ve already tried it and it didn’t work.
  • It’s contraindicated  for someone with EDS (it could do more harm than good).
  • I’m broke and that treatment is expensive. Are you offering to pay for it?

Am I going to “get better”?

That depends on your definition of “better”. The EDS isn’t going away. There’s no cure for that.

I’m hopeful that eventually I’ll be able to manage the headaches better. Because of the underlying cause, I don’t foresee them completely going away. Sure, it’d probably make other people feel more comfortable if I spouted all that, “I’m going to fight. This ain’t gonna lick me. I won’t stop until I’m cured” stuff.

Why set unrealistic goals and be disappointed? So other people feel more comfortable with me? It boils down to balance. I try to balance finding the most efficient/effective way of managing this while also living my life. If I’m not living my life, then what’s the point? I can’t live my life unless I accept that I have a few limitations.

I’m very optimistic about the future. I’m pretty well convinced that in the future we’ll just be 3D printing body parts as they go out. But, none of that is ready today. For today, I’m going to accept that this is just how things are for now and not beat myself up over it or push myself beyond what I’m able to do. As a chronic over-achiever, that has been the hardest thing to do.

Interesting Things This Week

Link dump of some cool, interesting, encouraging, and/or insightful things I came across this week.

Why English majors make lousy fundamentalists by Morgan Guyton from Mercy Not Sacrifice

This might be my favorite thing this week. First, Morgan talks about personality type (which I have an unhealthy obsession with). Then, he goes on to explain some of the nuance, beauty, and depth of meaning that is lost when you read the Bible in certain ways. I may not agree with every interpretive example Morgan uses, but that’s not the point. The point is that you have to understand something about literature in order to have a fuller understanding of the Bible.

When the Bible is “nothing but the facts,” then it’s been robbed of a critically important layer of its beauty.

Wanna Save Marriage? Stop Patronizing Women by Yaholo Hoyt from Red Letter Christian

Yaholo takes a look at how seemingly self-deprecating jokes can further the tension and misunderstanding between men and women. It amazes me that certain Christian cultures continue to paint women as overly emotional, unreasonable, and downright crazy when that same culture claims men are the ones who are unable to control their animal urges (which is why I’m supposed to wear floor length skirts).

We may get a chuckle with our little “guys are stupid” and “women are crazy” jokes, but they are pointing to a major problem. The picture often painted by church culture is that women are unreasonable and over-emotional. Therefore, the only way to a healthy marriage is seen as the man just making sure to be “humble” and apologize a lot. This kind of thinking leads to growing resentment on both sides.

Who are the meek? by Paul Walker from As above, so below

I’ve been studying the Beatitudes lately and came across this post. Not only does Paul do a great job of explaining what “meek” means, he also asked, “Christian scholars, leaders, bloggers and authors to ‘tweet’ me their definition of meek”. He did a wonderful job of pulling everything together and it was interesting to see what the experts thought.

The Extra Burdens Faced by Young People with Chronic Illness by Toni Bernhard, J.D. from Turning Straw into Gold  on Psychology Today

I’ve lost count of how many people have said, “Oh, you’re too young for that. You should just exercise more and you’ll be fine.” (Sure, exercise will magically rewrite my DNA.)

This ignorance about young people with chronic illness has other consequences. Several young people have told me that they’ve been openly challenged when they park in a disabled spot, even though they have the required placard or sticker… A young woman with multiple sclerosis told me that someone spit on her when she didn’t give up her seat to an older person on the subway.

When God Calls a Complementarian Woman into Ministry by April Fiet at the Junia Project

I appreciate April’s honesty and her willingness to go into ministry despite her reservations. I’ve often seen woman ministers painted as prideful, power-hungry, militant feminists that are trying to wrest power away from men. April’s story doesn’t look anything like that.

I had already come to realize that you could take God’s Word seriously and believe that women could be used in church leadership. I wasn’t doing it because it was easier to follow cultural trends of equality.  I was being faithful to God’s calling and the Bible.

The Church Can’t Afford the Muskox Model by Jayson D. Bradley

I’ve been known to go off on rants about how Christians tend to view anyone who isn’t exactly like them as “that other group”. I get frustrated when we start other-ing instead of trying to understand and love. Christian culture has taken “in the world, but not of the world” to the extreme in some cases. A friend of mine flipped that phrase around in a way I thought summed it up even better “of the world, but not in the world”. We have Christianized everything that the “world” has to offer, but we keep ourselves separate so that we don’t have to actually interact with the world. That separation is more illusion than anything. We just stamp CHRISTIAN on everything that pop culture has to offer and hide out among our “own kind” so that Christianity won’t actually cost us something.

The problem with adopting the defensive strategy of the muskox is that we begin to live at odds with the message we say we believe. We talk a big game about taking care of the poor, but talk down to people who live on government subsidies. We speak endlessly about grace and forgiveness, but refuse to let people experience it until they’ve become a muskox themselves.

101 Amazing Facts from mental_floss

I really like random bits of trivia. I know way too many completely useless facts, but I just can’t help myself when I come across more of them.

Most Shocking Second a Day Video

War always involves civilians. When we’re talking about war, we can’t forget that.

My Reaction to Ehlers-Danlos Syndrome when…

When I found out my multiple, life-long, unsolvable medical issues were due to just one thing. YES! I have an answer…wait…I have a genetic disorder. 

YES wait what

 

When anyone asks, “How are you doing?”

dont know

 

When I pay medical bills.

Money

 

How other people react when I pop my shoulder out of socket.

ohno

 

When I justify not going to the doctor because I can’t take on any more medical debt.

Flesh Wound

 

When a person told me I must be sick because of a sin I haven’t repented for.

(Since I was born with this, I assume I was one bad ass fetus.)

lost-mind

 

When I’m getting ready to travel, about to go do something fun, or it’s a holiday… and my neck goes out so I have to stay home and vomit for two or three days.

shit

 

When people think they know what I am and am not capable of doing.

opinionated

 

When I receive unsolicited medical advice from people who don’t know anything about Ehlers-Danlos Syndrome, let alone my specific issues.

stop talking

 

When people think doctors are magical fairies who can fix all things if you just spend enough money. 

OK

 

When someone says, “God never gives you more than you can handle.”

wrong

 

When I ask my Facebook friends (the ones who love to share little awareness pictures for things like cancer and autism) to share one of my multiple Ehlers-Danlos Syndrome Awareness month posts.

giphy please please please

 

When my mother is the only person to share one of my easy-to-share Ehlers-Danlos Syndrome Awareness month posts.

invisible

 

When I read an article about new research that might benefit people with Ehlers-Danlos Syndrome and it gives me hope that there will be a fix by the time my daughters are my age.

yeah-science

Awkward Ehlers-Danlos Syndrome (EDS) Moments

Ehlers Danlos Zebra

Picture credit – Ehlers Danlos Zebra

I didn’t realize I had Ehlers-Danlos Syndrome for the first 30 years of my life.  I just knew I was weird.

Having a connective tissue disorder (with all the strange, seemingly unrelated medical problems that go along with it) and not even knowing it has led to several awkward moments.  Like…

The time I passed out and half the dorm floor tried to give me CPR.

I was eighteen and had just moved into a new dorm.  A couple of the other girls walked into the bathroom while I was cutting my hair.  One of them asked if she could wield the scissors and I happily handed them over (hey, free haircut!)  A few more girls wandered through the bathroom, but stopped to chat.

My new pal was snipping a few stray strands at the back of my neck and… I woke up being hauled into the dorm hall.  I had just started to open my eyes when I heard a shout of, “Does anyone know CPR?!”  I regained my senses enough to “thanks, but no thanks” them on that one and explain that randomly passing out was just something I did from time to time.  None of those girls were very interested in hanging out with me after that.

The time my dad bought me a knick-knack and I thought it meant I was dying. 

My dad is thrifty.

How thrifty?

Our family once hand dug a well.  He’s that thrifty.

So, I was shocked when he came home one day with a porcelain dog for me.  I was thirteen and had been battling an unknown GI issue for a couple of months.  I’d feel fine, eat a meal, and it would come right back up within half an hour.  None of the doctors I’d seen could figure it out.  But, I really thought it was going to be OK until I saw that dog.  I didn’t think my dad would buy me something frivolous like that unless I was dying.

The time my parents were accused of abuse via Pop-Tarts. 

I was still thirteen and still dealing with the mysterious vomiting issue.  I was really tired of kids making fun of me for being so thin, so I was determined to eat anything that would stay down.

For some reason, Pop-Tarts wound up being the only thing I could eat.  I ate Pop-Tarts for breakfast, lunch, and dinner.  While the other kids at school ate their various lunches, I’d open up a package of Pop-Tarts.

I must have said something along the lines of, “This is the only thing I can eat.”  One of the girls misunderstood what was going on.  She talked to her mom and her mom contacted the school.  When the story got back to my parents, they were surprised to find out they were abusing me and wouldn’t allow me to eat anything except Pop-Tarts.  There was no mention of the whole spontaneous vomiting thing, since I’d been too embarrassed to share that bit around the lunchroom.

The time a cute guy complimented my appearance… my apparently undead appearance. 

I was sixteen and on a trip with a bunch of other teenagers from all over the country.  We’d stopped to grab a burger and one of the most attractive guys in our group sat down at my table.  During a lull in the conversation he says, “You have a really cool look.”

Mentally batting my eyelashes, I replied, “Oh, yeah?”

“Yeah, your eyes are kinda blue where they should be white…and you have really dark circles.  You look like a vampire.  It’s really cool.”

Sixteen years later, I’ve yet to come up with a response to that.