I’m going to complain now. Skip this post if you don’t like whining.

I have started writing this post a hundred times. I’ve tried writing it in essay form, in poem form, in rant form… Nothing comes out right. So here it is: I’m just going to tell you everything I’m thinking and hope it works as therapy for me.

My head hurts all the time. All the time. All the time. I told my friend today that, sure, I do everything I normally do. What am I supposed to do? I used to rest when I got a headache. So maybe I should climb in bed and hope it goes away? Most of the time it’s more of a nagging pain. It gets annoying in the way that you’d get annoyed if someone tapped you on the shoulder incessantly all day, every day. You can do what you need, but sometimes you just want to scream. But if you scream, you run the risk of that tap becoming a whack with a hammer. I don’t want to complain, but that’s all I feel like doing sometimes. Especially because headaches make you tired. All the time. I had a nice run of very slight headaches and it was amazing how much more motivation I had to make food, clean, and teach the kids.

Cough headaches: when you feel like your head will explode if you cough, bend over, sneeze, laugh, or sometimes they seem to happen for no reason. It’s like nothing I ever felt before – in a really specific place and it makes me want to vomit. I get these once or twice a day on a good day. The good news is, the pain is a burst and doesn’t stick around. But it can make my headache worse.

My ears have been constantly ringing as long as I can remember. Sometimes it’s just a hum in the background, other times I think that something in my house is actually making a ringing noise.

Speaking of noises, I hate them. Pretty much any noise makes me want to cringe. Do you know what it’s like to tell your kids not to laugh so loud? I waited for years to hear my own kids laughing in my house and now I have to ask them to be quiet. I love music, but there are days when even Joe Purdy is too loud. This makes me so freaking angry. I don’t want my “condition” to affect my family so much. It makes me wish that I didn’t exist sometimes because I feel so bad for asking for quiet all the time. “Mommy has a headache” repeated ad nauseum.

I want to be normal. I want to be normal. I want to be normal. (I was kind of hoping that might work like “there’s no place like home”…

Every morning, I take two Extra Strength Excedrin. I worry that I might cause rebound headaches and sometimes I try skipping the Excedrin but I always regret it. Every afternoon, I debate about taking more. I worry that I’ll cause liver damage or hurt my stomach (I’ve done that before) but my head hurts and I just want to feel normal. Excedrin helps sometimes, unless I wait too long to take it. So I usually take two more and hope for the best.

I’ve got a bunch of random things, too – my vision blurs a lot. I don’t know if I just need new contacts, but it’s getting really annoying. Sometimes, the room spins out of control. Of course, it’s just me and the vertigo episodes I get.

Every afternoon, I don’t want to make dinner. I try to make everything I can from scratch. We haven’t had store-bought bread for months (except the random loaf of rye for Reuben sandwiches) because I like making bread. I try to have healthy dinners for my family every night, but to be honest, I’d rather just get Taco Bell or something I don’t have to make.

I try to write something funny and my fingers type the wrong things – the wrong letters, the wrong words, whatever. I’m so frustrated because I hate feeling so inept.

I’ve done my traction 5/7 days for a few weeks. I’ve worn my collar at least that many days. I hate them both. My CTO vest has been sitting on my bedroom floor for a long time. I hate it the most.

The debate about what I should do next is long and boring. Suffice it to say, I’m grateful for the diagnosis from The Chiari Institute, but I don’t think I’ll be going back there. It didn’t feel like the right fit, if you know what I mean.

I feel like a child who’s been given options: Live with it, Use the collar/vest/traction more consistently longer to make sure I’ve given it a fair chance, Find a new doctor. And like a child, my choice is: I don’t like any of those choices. What are my other options?

Yet, now, instead of crawling into bed to cry (softly, so as not to make my head explode), I’m going to get up and make dinner.

Resale Therapy

Yesterday I got 31 pounds of origami and other Japanese paper delivered to my door. I like folding paper – it’s really something I can do when my head is throbbing and I can’t think straight. For some reason, my fingers can fold without my brain having to function and having a pretty “something” at the end makes me feel happier.

I’ve got these things piling up – not sure where to put them all. And some of my friends said I should try to sell them. Well, I’d make them for free, but the paper isn’t free and I figured it was worth a shot. Etsy is a site where people sell handmade or vintage items – or supplies. I figured if I was going to try to sell my origami balls, I’d try to sell paper, too. Hence the 31 pounds delivered to my house yesterday. I found a wholesaler, got a tax ID number and yesterday I listed all my paper.

I’m weird, though. Part of me just wants to hoard it all cuz it’s just so pretty.

Anyway, here’s a link to my Etsy shop:

http://www.etsy.com/shop/GoWithTheFolds

Please stop by – and if you know anyone who needs origami paper, scrapbooking paper, or other things tell them to check my site out.

And, if you’re super generous, “Like” my page on Facebook:

Go With The Folds

I sure hope something sells!!

I Got Nothin’

My symptoms have gotten worse again lately. Stronger headaches more frequently, louder ringing, vertigo, random nausea. And maybe the worst part: Brain fog. I simply can’t think straight. Forget about going over my old stuff to revise it let alone trying to come up with something new to write. Everything that comes out is whiny and depressing and I hate that kind of stuff. I’m complete inept at expressing exactly how I’m feeling right now. So I guess it’s EDS-induced writer’s block.

It makes me wish I didn’t want to write so badly. It makes me wish I had finished all those pieces before now.

Heck. I can’t even think about what else to write about the subject of not knowing what to write. Sigh.

Saab Story (part 2) In Which I Wanted to Beat the Tar Out of Beau

My Saab was a great car. But I only got to drive it for just over two and a half years because when I found out I was having twins, Ethan was still in a car seat and we couldn’t get three car seats to fit across the back seat. So when I was 36 weeks pregnant with the girls, Tom and I went van shopping. Tom is great at research and had already decided we wanted a Honda Odyssey. So the first place we went was Park Honda in Akron where our salesman was a jerk named Beau.

Now it’s possible that my feelings were slightly altered because of the hormones surging through my worn-out, stretched-out, tired-out body, but I think Tom would agree with me that Beau was a moron. First off, he invited us back to his desk to talk about what we were looking for, then he raced away expecting us to keep up, I guess. Well, buddy, I wasn’t going anywhere that fast because nearly full-term pregnant women (excepting some freakishly crazy women) can’t run, they waddle. Strike one, Beau.

So Tom told Beau that we wanted an Odyssey and that he’d seen one online that we wanted to look at because it was way below the usual price. Beau wouldn’t let us see it because he insisted that we should get a new one. We didn’t want a new and Tom made that clear. I don’t remember all the details, but once Beau realized he wasn’t going to get us into a new model, he relented and took us to the cheaper one. Before he opened the door, he explained that it was so cheap because the previous owner had been a chain smoker and they had done all they could, but the smell of smoke wouldn’t go away. Then he proceeded to add that he hadn’t wanted to show us the van because I was pregnant and the smell would have made me sick. Ahem. He could have told us that before dragging us across the lot to see the van that we certainly weren’t going to buy after we smelled it. Strike two, Beau.

That’s when we went back inside and Beau decided to see if we could “do some math” to make a new van come into our price range. We were trading in the Saab and he claimed that he could never sell a car like that. “It’s foreign and no one buys foreign cars.” Hello. Honda??? Anyway, the amount he offered us for it was less than half of the KBB listed price. Eventually, I got emotional – we’d been there quite a while and had obviously wasted all that time for nothing. Beau saw me trying to keep it together and said to Tom, “Hey, I don’t want to upset your wife, she might go into labor.” Oh if I had had a baseball bat and could have moved faster than a turtle. That was the end of our time at Park Honda. Strike three.

We ended up going to Marhoffer’s and getting our Odyssey from them. They offered me a comfy chair and a Coke. They offered me food and chatted about their own kids while asking about ours. They gave us a fair deal. In the end, it wasn’t a bad trade – my new (to me) van had heated leather seats, a sun/moon roof, and it has a V6. And that’s the end of my Saab story.

 

Saab Story (part 1)

Have you ever pulled into your driveway, parked your car, and thought, “Did I just actually drive here?” It’s like your brain was in auto-pilot the entire time you were driving. You wonder if you ran any red lights or if you looked before you turned left. It’s rather frightening, right?

It was mid-December. I was driving in auto-pilot that day, but instead of finding myself at work or in my garage, I found myself surrounded by the acrid smell of air bag and the sudden silence of my radio. I could have sworn there wasn’t anyone in front of me, let alone a dump truck. However, it was there. And I had driven right into the back of it.

I don’t know if I stepped on the brakes. I don’t remember slamming the pedal, but I had been doing a solid 55 and I don’t think I could have escaped injury had I not slowed down at least some. However, in my mind I was driving along singing “The Happy Song” by Delirious one second and the next second I was listening to the sound of creaking metal as the dump truck pulled his truck forward and off to the side. I briefly considered doing the same, but I quickly realized that my car had flat-lined.

I called 911 and told them I had no idea where I was, which is weird because I drove that way every day during the workweek and even on Sundays for church. Fortunately, the driver of the truck had maintained his senses and help was on the way. I wasn’t hurt, but apparently the air bag had managed to cause a single pore on my nose to burst and there was literally a speck of blood on the bridge of my nose.

Totaling that car – my first (love) car, a 1999 Accord with a spoiler and chrome wheels – fit in with all the other crud that had happened that year. In 2004, I had my first miscarriage, two of my grandparents died, I totaled my car, and found out I had endometriosis. In fact, my first laparoscopic surgery for the endo was two days after my accident. While I was under, Tom went out and bought me a new car. A Saab 9-5SE.

As much as I loved my Accord, the Saab was the car of my dreams. It was silver, had a sun/moon roof, leather heated seats, a V6, and even those tiny wipers on the headlights. I drove it home from the dealership (since the Accord was in my name, I had to sign for the Saab before we could bring it home) in a Vicodin haze. It’s a miracle I didn’t crash.

Hello. My name is George. I’m unemployed and I live with my parents.

I have finally found a situation where I can’t honestly reference Seinfeld. Quotes from Seinfeld float in and out of my brain all day; almost everything that happens reminds me of an episode of Seinfeld. In fact, I often refer to Seinfeld when I’m hoping to help someone understand what I’m feeling. Lately, I’ve been thinking about death. And the only episode I can think of is when Susan, George’s fiancee dies. The doctor tells George she’s gone and he thinks for a moment and then asks if anyone wants to get coffee.

Now I won’t go into the whole argument about whether that was wrong – of course “normal” people would have shown more emotion. However, Seinfeld was a show about people who did exactly what they wanted – who didn’t try to cover up the truth like “normal” people do. George didn’t want to get married and now Susan is dead. Problem solved. I think in real life, there might be similar situations, but no one wants to admit it. The truth is, most people cover up the truth – even when everyone knows they are lying.

When I heard about a family who had to take one of their twin babies off life support yesterday, I sobbed. And then I went and hugged my kids and thanked God that it wasn’t me who had to do that.

A close family member of ours has Stage 4 cancer. He might live and he might not. But just in case, we are spending more time with him. I wish I could say that it has nothing to do with the fear of not getting much more time with him, but I can’t. If he were healthy, we wouldn’t go out of our way to see him. It really makes me feel like a jerk because we loved him just as much before we knew about the cancer, but we didn’t make extra efforts to spend time with him then because we didn’t feel like we were running out of time. It is a very uncomfortable feeling to do something you wouldn’t normally do – I (illogically) keep hoping he won’t think that’s what we are doing. But he’s not stupid. It’s that whole “elephant in the room” thing, I guess.

My only living grandparent resides in a nursing home. She has Alzheimer’s (they think) and has no idea who I am. I don’t mind visiting her – I want to make her happy and she seems to like watching my kids play in her room. But it stinks to go there and to feel so uncomfortable; to regret not spending more time with her when she was younger. It also stinks to see her looking so lost. My dad’s mom had dementia for as long as I knew her. I’m very familiar with that “little lost girl” look and I hate it. Why is my grandma still alive? If you want the truth (and obviously I don’t care if you don’t), I want God to take her home. Now. There’s no reason for my mom and her siblings to have to watch their mom deteriorate day after day. She doesn’t even recognize them most of the time. So as horrible as it sounds, I hope she won’t be around much longer.

Right now, I wish I could get coffee and forget about how much life sucks. I’ll tell you what, though. All this heartache and misery serves at least one purpose – it reminds me that this world isn’t my home. That nothing here is permanent and that nothing is guaranteed. And now, if you’ll excuse me, I want to go hug my kids and my husband for awhile.

“If God is satisfied with his work, the work may be satisfied with itself.”

I don’t know why I’m so completely unable to accept that pain is going to be a part of the rest of my life. I’m not the first person to have chronic pain and headaches – and I certainly have it far better than a lot of other people who have chronic issues. But for whatever reason, every morning I keep hoping that I’ll wake up and feel normal. That I’ll be able to ride my bike 30 miles again without worrying about the crushing headache that is sure to follow. That I’ll be able to freaking bend over without wondering if my head will explode.

I want to cry that it’s not fair. I want to scream and wail and throw a royal temper tantrum because I don’t deserve this. I’m a good mommy and all I want is to make it through a day without telling my kids “I can’t…”

I sound like a broken record.

But I can’t accept this. I just can’t.

It’s amazing how we humans are so self-centered when we’re hurting – for whatever reason. It’s hard enough to put others first when life is great. But the instant something goes wrong, it’s like suddenly we have no choice but to focus on ourselves. (And in American society, it’s no wonder; all you ever hear is that “you need to take time for yourself” or “well, you can’t be expected to worry about someone starving to death if you’ve got a zit and the prom is only a few days away…”)

As wrong as it is, it’s natural for me to get angry with God and tell Him He’s wrong for making me this way. Or to say that if He loved me He wouldn’t do this to me. And then comes the self-condemnation because I know that I’m being selfish. What about that mommy I know who just lost her five-month old baby? Or that person I love so much who’s fighting for his life against lung cancer? Or what about the little girl who has Chiari and has suffered her whole life with it and will have to suffer for the rest of her life, barring a miracle?

As I sit here with tears attempting to spill out of my eyes, I feel so completely and utterly helpless. And worthless because with my head hurting, I pretty much am worthless, at least in the sense that daily tasks become overwhelming.

I was looking for quotes from the book “The Problem of Pain” by C.S. Lewis and ran across the quote “If God is satisfied with his work, the work may be satisfied with itself” (which happens to be from “The Weight of Glory”). That may not seem to you like what I need to hear today, but it totally is. Because I’ve been measuring my worth by what I’ve accomplished so far – which is pretty much to say I’ve been feeling like a loser. I fear that my limitations will keep me from being what I was meant to be. That I’ve missed my ship because I should have written so much more when I could think clearly without fighting against the constant squealing in my ears. I fear that I’ll never know my dreams because I feel depressed so much more often than I feel snarky.

But on the sixth day, God said that everything He saw was very good. And God is omnipresent, omniscient, and with Him a day is like a thousand years and a thousand years are like a day. When He was looking at His finished creation, He could see me. (And you!) And He said it was very good. That means, despite my faults, short-comings, and failures – somehow I fall into the category of very good.

Today, that just blows my mind. God is satisfied with me; He isn’t waiting until I reach whatever goals I have for myself to be satisfied. He’s satisfied now. Maybe someday, I’ll be able to say the same thing.