Category Archives: EDS

I’m tired.

I’m not sure why I’m so tired, except that there is a lot going on at home. Ben got sent home from school yesterday because he wasn’t controlling himself, so we picked him up and ran errands. We took him to the running store, and he was awful,arguing over everything and wandering around and touching everything. We didn’t end up spending $70 on shoes, because that’s ridiculous for kids’ shoes. For adult running shoes, it’s a little different, because they’re going to be used correctly and the runner won’t outgrow them.

We got bedding for Alex, who will be here a week from Thursday, if all goes well. That was a good thing, especially since it wasn’t too expensive. It’s purple, but the choice was between that and pink. I think he’ll be happy that we also got some laser tag kits on clearance.

When we got home from all of our running around, I noticed that my left ear felt weird, inside my head. It’s still feeling weird, dry and painful, but less so now that I’ve drunk half a gallon of iced tea. I’m hoping it’s just allergies and it’ll go away, because I didn’t sleep well with the pain.

Nothing profound going on here, just life. The weather’s been nice, but temperatures have bounced around over a 40 degree range, so my joints are unhappy and letting me know it.

An Assortment of Things.

This post is kind of random, so it’ll be all over the place.

Ben got his teeth taken out.

My gap-toothed, curly-headed boy.

Ben’s new smile

He said it didn’t hurt, and he was so very relaxed afterward. Nitrous is wonderful. If you care to, you can see his “big” tooth behind the vacated spots, off to the right. I’m personally kind of squeamish about teeth, as I’ve discussed before, so this is the most I’ve looked at the whole thing. I guess I’m ok as long as it’s on a screen.

He got to take his teeth home, and the dentist’s office even had a little holder for the teeth, and packaged that up with some gauze if he needs or wants it. I haven’t been brave enough to look at the actual teeth yet, and I probably won’t for a while.

He was so cute as we were driving. He asked, “Mom, do you know what the Tooth Fairy looks like?” I told him I didn’t, since I’d never seen her, just talked to her on the phone. “Oh. When you see her, will you ask her where she lives?” He comes up with the most interesting questions!

I dislocated my thumb last night, so I’m wearing a brace, which makes typing a challenge. It’s a very frustrating thing; I can shoot a shotgun without dislocating my shoulder, but sleeping will do it. I dislocated my thumb from the extended pressure of holding my tablet. Mar said when he gets paid, I can get this tablet cover:

It has a strap to make holding the tablet easier. I love my tablet, but its big drawback is that it’s fairly heavy, at almost a pound. I tried to make my own cover, but I got something wrong and it doesn’t hold my tablet in. I’ll probably revise it and figure out the details at some point, though. My current project is making myself a new bag. I can’t find one that fits all my specifications, like “big enough to carry my tablet” and “with a long enough strap that it falls comfortably by my hip”. (I  have a long torso, not that anyone could tell with all the padding.) The best part is that I have all the supplies; J gave me a bunch of fabric remnants she’d picked up, and there are two big pieces I’m going to use for the inside and the outside, and two long pieces I’m going to use for the strap. I do wish I had some way to make the strap adjustable, but I don’t, so I’ll make do.

Ben is hungry, so I’m going to go make veggie mac’n’cheese with crushed meatballs. The meatballs are done already, and they smell great! Aldi’s is a great place to shop.

Quiet Days.

The weather turned again, rainy and cold. I’ve been snuggled up with my tablet reading, mostly. I haven’t been playing any Fallout because I installed a story mod that I really don’t like, but I wasn’t paying attention and saved over the save just before I started it. The most recent one I have is back in Dead Money, and the end of that was so frustrating that I’ve been reluctant to do it over.

Ben had a field trip to the zoo today, which I forgot about, and they weren’t back in time for his dentist appointment. It’s rescheduled for next Wednesday, which will be a total blast…. I should cancel his physical therapy, since I don’t think he’ll be in any mood for it.

Mar seems to be doing OK. I can hear him yelling at Dark Souls 2 downstairs, but that seems to be his favorite activity lately.

I’ve been reading the Stephanie Plum books, by Janet Evanovich. They’re fun and they don’t require a lot of brain power, which is exactly what I need. When the weather changes, I end up hurting. This time its not just the arthritis, but the bursitis in my right hip. It’s times like this that I wish I had insurance so I could get pain meds and cortisone shots again. Ah, the glamour of EDS. As if that’s not enough, Ben put my cane somewhere and I can’t find it. Its a nice one, as far as canes go, leopard print and adjustable height, but sometimes it’s still kind of depressing that I’m 35 and need a cane.

Possibly something more cerebral later this week.

Doctor Day

As in “Day of Doctors”, not an actual doctor named Day.

We went to the pediatrician this morning, and got a referral to a rheumatologist to get a definitive diagnosis for Ben. I’m not sure why EDS falls to rheumatologists to diagnose, but it does, so within the week we should get a call to schedule an appointment.

I really like Ben’s pediatrician. She’s really good, knowledgeable, friendly but professional, and she’s not afraid to acknowledge that she doesn’t know something. We waited in the exam room for a bit, though not excessively long, and when she came in, she explained that she’d been looking up EDS because she didn’t know much about it.

We came back and hung around the house a little until the dental appointment. Mar took a nap, because neither of us slept much or well last night, and Ben snuggled with me while I edited and tested a radio mod for Fallout 3 called iPip. I finally got it working, so that was nice.

The dentist appointment was much easier than I was worried it would be, mostly because they took Ben back by himself and I didn’t have to be in the room. I gave the nurse/hygenist the EDS information I’d printed out, and she actually read it, which was nice. They used nitrous, and she said it worked really well; they put the mask on him and he asked, “What’s that funny smell?” and then just went boneless, for the most part. She mentioned the adult tooth that’s taken up residence, and explained how the process of them coming in works. Apparently, the adult teeth somehow “saw” through the roots of the baby teeth, and that’s how the baby teeth fall out. That makes sense to me, because the adult tooth Ben has is lightly serrated, but actual adult front teeth aren’t.

Anyway, he has an appointment to get both bottom front teeth pulled next week, to make room for that rather large adult tooth. I am somewhat optimistic about his tooth moving into place well, because EDS lends itself well to teeth moving, and even if he does need braces, they should work fairly quickly, though he’ll have to wear a retainer for longer than usual. Six of one, half dozen of the other, I suppose, although it sounds like it will be less painful this way, with a shorter amount of time needed to actually move the teeth. They just require more persuasion to stay where they’re put.

By the way, if anyone is curious about EDS and the things I printed out, I can do an entry about it and about my experiences with it. Google can tell you the clinical information; how it actually impacts day-to-day living is a bit harder to understand.

In geekery news, I ordered my tablet! We came into a windfall and I ordered an off-brand tablet (Latte, for the inquiring minds) as my Mother’s Day present. It came in and it was pretty good for what I wanted, which was internet and e-book reading, although it was a little slow. Still, no big deal; I could work with it, and it was a lot easier to type on than my phone. I got up the next day and things seemed fine, but I glanced over and the screen was flashing. I unplugged it from the charger and tried to turn it on, then plugged it in and tried to turn it on, and… nope. So I returned it. I sent it back Monday and got my refund from Amazon today, which is pretty impressive to me.

One of my online friends had sent me a link for a Lenovo ThinkTab, refurbished by Lenovo, that was $9 more than the no-name tablet, with free shipping (from nomorerack.com, who I’d never ordered from before, but I trust the friend that recommended it). Even better, it’s a bigger screen, a quad core, and double the memory. The website said “we ask that you allow 10-14 working days for shipment. Although, often times, items ship much faster than this.” I certainly hope so; I’m excited to get it! Once I have it, I might attempt making a cover for it. I remember seeing a tutorial somewhere online, and it didn’t seem outside my skill level. Yes, I know, I have other projects in various stages, but this is something I can do when the weather isn’t conducive to painting. I think I have enough fabric remnants to make something nice, but I’ll have to figure out how to get some thin but sturdy flat plastic. Maybe plastic canvas? Something to think about.

More dental nonsense.

Tomorrow is the big day: Ben has an appointment with his pediatrician at which we’re going to confirm the EDS diagnosis, hopefully (she pretty much agrees, but I’m not sure she’s put it in his chart, and Mar is extremely insistent that we have it in writing, because reasons), and then we go to the pediatric dentist. She was kind of weird last time, asking why anasthetics don’t work. I don’t freakin’, know, lady, I just know it’s true. I admit I was kind of pissed that she was dismissive of my reluctance to go to the dentist. She asked something to the effect of how I feel about the dentist, and I hesitated, trying to figure out how to put my feelings into words, and she cut  me off with, “Oh, so normal then.” Uh, NO, because of the aforementioned “anasthetics don’t work” issue? When I know that going to the dentist is going to result in 3 or more days of pain, both from the procedure and from the repeated and prolonged dislocation of my jaw, I would venture to guess that my attitude toward dental procedures is not at a normal level.

Anyway, I printed out a bunch of stuff for her and highlighted the relevant parts, and some abstracts that I can’t access but she probably can, and in the process I learned that EDSers tend toward high cusps and deep fissures; in other words, our teeth are shaped in such a way as to invite cavities. That was another thing that pissed me off, the way they all acted like we just let Ben have as much sugar as he wants and never brush his teeth. It’s not like he’s sitting with the sugar container and a spoon as soon as he gets home. I got the “no sugar” lecture THREE TIMES. Again with the treating me like I’m stupid, which definitely does not do anything to endear you to me.

I found it interesting that just reading about dental procedures stressed me out to the point that I was lightheaded. Gee, no, I just have “normal” anxiety about the dentist. That’s totally normal, right? I hate the dentist, and I always have. I even have trouble watching Little Shop of Horrors, and I think I might have a lingering dislike for Steve Martin because of it, even. The worst part of dealing with Ben’s dentists (both of them have been dismissive; the first one I asked him about Ben grinding his teeth to the point where it wakes me up if he’s in the same room, and he said, “No, Mom just needs to calm down.” Twice. EXCUSE ME???) is that I don’t know a. how to make a complaint, like how to word it so I don’t get dismissed again as a “hysterical female” or the equivalent, and b. if it would make any sort of difference anyway.

So I’ve decided that, in an effort to not get stressed out thinking about tomorrow, I’m going to do a Let’s Play on a Puce Moose mod that I recently discovered. I’m going to have to restart it, because as I started it, the UPS guy showed up with a new toner cartridge for the printer and I had to print a return label for my Mother’s Day gift. Quite depressing; I got a tablet and it died less than 24 hours after I got it. Hopefully I’ll get the refund soon, because I have my eye on a Lenovo tablet instead of a no-name one. Used, obviously, to get to where we can squeak by fitting it in our budget, but I almost literally drooled when I saw the specs.

I’m off to put Ben to bed and then play my mod. It’s called The Mantis Imperative, and it looks interesting.

Teeth freak me out. And some project info.

Teeth freak me out. I was traumatized at a fairly young age by a dentist who was cutting the tendon behind my top lip (lip tie, I think it’s called?) because nobody knew I had EDS, which makes anasthetics not work so well. He was cutting and I was crying and backing up OVER the chair, and he told me, “Oh, this doesn’t hurt.” EXCUSE me? How about I do this to you without anasthetic, hmm? But nobody ever believed me, and I’ve had some real stinkers in the dental department. I did have one amazingly awesome dentist, but he’s the next county over, unfortunately. He kept injecting novocaine and waiting for it to kick in, up to the legal limit, and when I could still feel him grabbing the tooth and wiggling a little, he backed off and sent me to the oral surgeon. I get to be asleep when they pull my teeth? SIGN ME UP. (It was twilight sedation, but close enough for my purposes.)

Anyway, I mention this because Ben’s at the age where he’s getting his first fillings soon. It wouldn’t even be an issue if he hadn’t been stealing candy and eating it after bedtime, thus negating the point of brushing his teeth. We’ve been cracking down on the brushing, and he’s not allowed any candy for a while. The other night, he was brushing and asked me, “Mom, what’s this here in my mouth?” I looked behind his bottom front teeth… and there’s a little nubbin of an adult tooth.

He has not lost any of his baby teeth.

I tried not to, but I kind of freaked out. I’m assuming for something like this, he’ll have the tooth pulled, but I don’t know how they’ll go about moving the new tooth into the right place. And I want to be there for him, but I almost passed out when he could feel the novocaine needle and HE freaked out. (I don’t think he noticed that time.) If anyone has any insight on this sort of situation, please let me know what to expect. I don’t do well when I’m blindsided with stuff like this.

In other news, I got some gameplay footage, and as soon as I figure out how to do all the technical stuff, like voiceovers and processing and whatnot, I’m going to upload it to YouTube, and probably repost to here as well. Here’s my channel, in case anyone wants to subscribe.

I also got more materials for a new project (I know, I haven’t finished the Cap shield; I’m having some issues with the red paint, plus I can’t do the paint if the weather doesn’t cooperate, which it hasn’t been). I’ll probably post pictures and stuff soon, before I break out the spray paint for both projects, but I’m starting the process to make lightsaber hilts. Not sure how they’ll turn out, but I never am with this kind of thing. Finding out is half the fun of the process, after all.

Personal Stuff

This has been a challenging month. It started out with this on the 5th:

A creative and beautiful design... drawn on the walls and ceiling in marker.

That afternoon, we went to what turned out to be a wedding. They kept it a secret so people wouldn’t feel the need to dress up, etc. It was pretty fun, and the bride was beautiful. I was pretty worn out, though, so we left fairly early.

On the 10th I ran 2.25 miles, a personal best, and hung out with friends, and started this blog. Still proud of that personal best.

This week has been exhausting, though. Tuesday morning, I found out that Ben had been stealing candy and eating it after bedtime because he woke up with a Laffy Taffy stuck in his hair. So that explains some of why he has a zillion cavities. I got it out with the “mom” trick of rubbing it with oil, then combing through to get it out, but it was not fun for either of us. As a result, he’s not allowed to have any candy for the foreseeable future.

Now, some backstory: I have Ehlers-Danlos Syndrome, or EDS. It’s a genetic connective tissue disorder, where one type of the collagen my body makes isn’t right, resulting in some very weird symptoms, like stretchy ligaments resulting in unstable joints, unusual sensitivity to temperature extremes, and anesthetics not working well. I have had my dentist inject the highest legally-allowed amount of Novocaine in my gums and I STILL felt it when he tried to pull that tooth. (I ended up going to an oral surgeon for that one.)

Tuesday Ben went to the dentist for fillings. He had the topical anesthetic, but we’re pretty sure (as is his pediatrician) that he has EDS as well. So he felt it when the dentist tried to inject the Novocaine, and he freaked right the hell out. I don’t blame him, but I must have left my brain at home that day because I forgot that I have a tendency to get lightheaded when Ben’s in pain. To the dentist’s credit, as soon as Ben started trying to escape, he backed off and gave us a referral to a pediatric dentist. I’m pretty sure Ben didn’t notice that I wasn’t doing well, so yay me… he didn’t need something else to stress out about.

Wednesday he went to the podiatrist. It kind of took forever, but the doctor was really nice and was actually about to suggest that Ben has EDS, because he’s really stretchy. I was kind of amazed, because EDS is kind of rare, and we’ve found three doctors who know what it is: the podiatrist, Ben’s pediatrician, and my doctor. The podiatrist gave us scripts for orthotic inserts for Ben’s shoes and physical therapy.

Today I was supposed to go help my best friend pack because her family is moving, but I wasn’t feeling well and I missed the train to get there. I spent the day sleeping.

Tomorrow we go to get the inserts fitted, and then we’ll have to go back to pick them up at some point. After that, tabletop RPing! Saturday we have a birthday party, Sunday is Easter, which should be interesting given Ben’s candy ban, and Monday we go to the pediatric dentist. Tuesday I’m going to my best friend’s to help her pack since I didn’t go today. Wednesday Ben starts physical therapy, which is supposed to be three times a week for… six weeks, I think? The prescription is out in the car or I’d check. Thursday hasn’t been claimed yet but might be the pediatric dentist again; they said we’d probably have to go twice to get all the fillings done. Friday is probably going to involve physical therapy and possibly either more RP or fencing, depending on the weather, and Saturday is the big moving day for my best friend and her family.

Of course, that also doesn’t include school for Ben, me getting my financial aid straightened out and maybe signing up for some summer classes and definitely fall classes, and however many boxes of custom swords we get for work that have to go out, not to mention the stock swords that have to go out as well.

But then there’s things like this that make me smile:

Ben's feet sticking out of a box.

Ben's top half sticking out of a box. He's smiling.

Bring it on.