11 posts tagged “jaws”

MRI-call! I got it! On the first day of my vacation, even, so I don't have to shift anything to go there! Happines comes in big, claustrophobic tubes!

And I have my doctor's appointment concerning it on monday of the week we're getting married. So by the time we say I do with our original faces, I will know whether I get a plastic one or not. If I don't get one I'll go on a killing spree be sad.

They have to give it to me because I could easily find a gun really need it.

JOOOOOOOOY!

It always amazes me to find how crippling it can be to have something broken. I can't swim, run, jog, take long walks (or sleep) with the knee, and eating is hugely disturbed because of the jaw. Funny thing that, you'd imagine that because I, once again, have plunged under the 60 kg line, they'd HURRY UP AND SEND ME THAT MRI-CALL.

Another thing that amazes me is the amount of free time I have on my hands when I don't have to write and re-write my thesis every day. Since I can't do any sports, I've been getting my excersize by starting to sleepwalk again. Re-arranging the pillows, and a new favourite: hiding my watch. I think my subconscious is trying to tell me to go get the batteries changed in all my other watches.

I've also had the time to listen to music again. I find it a bit hard to concentrate with music coming out of the computer I'm working at, so now it seems like I've found a forgotten world. I've re-awakened my love to both Green Day and Rammstein, and danced like no-one was watching. No-one is. Except for mr. Nieminen from the closets, of course.

I've also gotten a gift that made me very happy. I begged a marketing guy from a company to give me one of these shirts a year or two back. They only had one size, mens XXL, so I gave it to a friend of mine. He wouldn't wear it even if I would've paid him to. It was the best ever medical commercial-shirt I've ever seen. And a few days back, we had a visit from a guy from the same company. And so once again, I begged and flirted to get what I wanted. And now, I am the proud owner of a Movicol-t-shirt, with a Bristol Stool Chart on the back. Mens medium size, so it's a little big, but I'm not parting with this baby, no sir!

I don't do diets. I don't have the need for diets most of the time and I know I don't have the stamina to keep one up. But I wonder a lot about dieting.

Paleodiet, where you eat like a caveman. Only raw things and eggs and stuff. Completely overlooking the fact that cavemen died at 30-40 years of age.

Waterdiet, where you drink shitloads a lot of water to keep your stomach full so you won't feel hungry.

The flight attendant-diet, where I have no idea what you do but involves lots of asparagus and lemons.

But I've been wondering a lot about one of the longer lived diets, the one where you put yourself in ketoacidosis by not eating any carbs at all. Not one. In the beginning you're not even allowed to eat lettuce and greens because apart from water they apparently contain carbs in some way. I'm not that good on nutrition. You only eat fried/boiled eggs and a lot of meat, chicken and fish. This is supposed to help the body burn fat instead of muscle while you diet.

I've always wondered about 2 particular things with this diet: how can you lose weight by frying everything, and how hard could it be refusing bread and pasta? I could easily do that!

So, with the jaw being what it is, I have had a nicer period for a few weeks where I haven't needed painkillers at all. To keep it that way I have been eating mostly soft and small things. Trying to keep healthy, and trying to remind myself of the only nutritional fact I believe in (a grown human needs to eat 800g - 1,2kg in a day to feel content) I've tried to add fruits and veggies. I've eaten a lot of chicken, which is soft and comes in convenient cubes in salads, minced meat (again small food), fish (soft) and fruits like bananas, grapes, pears (even if I have a hard time gripping this round fruit with my teeth, but it's soft too) and so on. I've been doing fine.

Until.

I saw a little old lady carrying 4 baguettes in front of me, and suddenly my brain froze me, climbed out through my nose, positioned itself right by my ear and shouted "CAAAAAAARBS!". It was very hard not to tackle that arthritic little old lady right then and there. I hadn't even noticed that I had gone a few weeks without eating practically any pasta, rice, potatoes or bread. But let me tell you, even if I didn't try this on purpose: when that carb-craving hits you there's no turning back.

So I went home and had tons and tons of spaghetti (<3 Barilla) and baked. Sami had a piece of cake and I had a cake.

And then there was light.

The main problem with chronic pain is that you don't wanna seem like a whiner. I don't talk about it in person nearly as often as I do here, mostly when someone asks about it. But there's the fear that people will start to look at you as a negative person who is always complaining about how much you hurt.

I came to think about it more after a girl I know was diagnosed with MS. I'd ask her how she felt and she'd say half her face was numb, but the thing was, you couldn't see it. You still can't. I knew how she felt because half my face has been numb too. For a different reason, but still.

I've decided to write about it quite a lot here because I know my near and dear ones, among others, read this, and I kinda hope they'd understand me and my moods a bit more. But it is very hard when it's not in you circle of reference from before.

Part of me always feels like I shouldn't complain at all. People are far worse off, with cancer and other things, but then again, this is not going away. Seeing my last x-ray really made it clear since half my jaw is a shriveled little sad nag of bone. But still, it doesn't show. Noone sees it.

I also used to think I was going mad. I thought, maybe I have an ear-infection and noone has noticed it because everyone thinks it's the jaw. Maybe I have a tumor in my head because the head-aches never go away. Maybe I'm just imagining it all, like one consulting doctor suggested. She thought it was just muscle-ache and I felt guilty for complaining so much for a long time. I still do.

In a way I think it is wrong to say it's gonna be okay, because it clearly isn't. Belittling the issue isn't helping in healing, it helps more with bringing guilt to the table. I have been now told that this is fairly common, and more so in women.

The thing is that with my work, doing what I do, I have access to doctor-oriented databases. It gets this bad in 0.something % of the population. And in that 0.something, yes, 70% of the patients are women. So fairly common seems like a bit of an exggeration to me. Then again, that kind of explains why it has been taken lightly for so long. It kind of explains that it has gotten so far and the bone really isn't a lot more than a joke anymore. I don't blame anyone for it, I think it would've eroded anyway.

What I'm trying to explain is the difficulty of being a chronic pain patient. Because that's what I am. I'm owning up to it now, and I have stopped feeling guilty for being in pain. I didn't invite this, and at times I feel stupid being this young and this broken. I feel guilty for being tired and irritated more than I am happy and energetic. And I have no way of explaining it to you all. It still hurts. It has for a long time. I'm sorry for being moody, but that's just the way it is. It hurts. A lot.

It's also a funny thing that I've gotten a lot more intolerant with customers who whine about pain. Obviously not people with cancer and rheumathoid arthritis and such, but people who come up and start explaining how much they have to suffer because they HAVE A COLD! Or because they SPRAINED THEIR ANKLE, see?! It megahurtz! Sometimes I'd want to tell them where they can take their sprained ankle and runny nose and shove it. Luckily I get paid enough not to do so.

More difficult is trying to explain why I won't eat when it gets worse. It's a relatively new thing and It has only gotten this bad during the last year or so. But when it hurts that bad, even liquid food isn't worth the effort. There's just no point, and soup or protein shakes get seriously boring after a while, and the real point is that it isn't as much the chewing motion as it is motion. You cant just tilt your head back and wait for soup to roll down either.

But the absolute suckiest part is coping with daily life. Not eating, and not sleeping makes life hard. Even when I sleep, 8 hours or more, the pain prevents me from feeling rested in the morning, so I feel sleepy all day all the same. Not being able with coping with, say academia, makes "my jaw's busted" seem like an excuse. It's the reason I had to re-write almos every exam I had during my last year in pharmacy (hi Mom!), right before the first operation, and it is the reason I have a hard time writing my thesis now. That, and the fact that I just don't value thesis-writing as an academic process. I don't see the point in putting that much effort in one text when the things I've learned are already behind me with the courses I took. I get that it is a test of maturity and all that, I just think way too much emphasis is being laid upon this thing.

Anyway. Hello Internet, I would like to tell you to treat people with caution since you can't see what's going on beneath the surface. And I hope you have a little more patience with me, because today I might be on painkillers, tired, hungry, and just so pissed that my socks didn't land correctly in the hamper that I might just as well curl up and die. I'll try to extend the same attitude towards all of you even if you don't live exactly like I want you to right now :)

I've thought about it (a lot) and realized that if I'd get my plastic jaw I'd be almost like Barbie with my plastic face.

I could tell people that I've "had a little work done" or that "I've had plastic surgery".

OR! If the scar is nice and long I could totally claim that it came from my long overdue lobotomy. I'll try that pink wedding dress now, thank you!

So I got this letter from the hospital, explaining what my situation was with the whole jaw-thing. Which was all new and very exciting since I've never gotten papers like this before. Ok, the whole point being was it was, at the very least, crushing to read a few of the sentences. My favourite was "MRI from 2005 shows clear destruction of bone" and "Patient has been suffering from symptoms almost 10 years". It has really been that long. We are going on 8 to be exact.

Okay, so the pain usually comes and goes, and no matter what people say: you get used to it. The ear-aches are the worst, and that's the kind of sharp pain I haven't gotten used to, at least not yet. It's for the better in some things, and for the worse in others.

For the better because you learn to cope. In order to not have to take so much painkillers I have this thing where I analyze it to bits and pieces. I pick apart one feeling and wrap my mind around it and try to examine is it really pain. Does it hurt? Is it more of a metallic feeling? An ache? A sting? A wave of sharper sensations?

You get the picture.

Doing this usually results in that most of the separated sensations don't hurt but are metallic, pressuring etc. And if the part don't hurt, the whole thing can't either. You see the logic? It helps in pretty much everything except for the headache-that-won't-grow-stronger-but-doesn't-go-away, and the ear-ache. The ear-ache is worst. Picture someone shoving an ice-pick down your ear and pulling it out just as fast. Feel that? That's it.

Fortunately the ear-aches aren't that frequent anymore.

Picking them all apart doesn't mean I'm not worried, but you learn to live with it, and going on 8 years, you recognize what is severe and what isn't. I only get panicked about one feeling nowadays and that isn't pain.

I sometimes wake up to feel my jaw growing tighter. Imagine you have a screw right in front of your ear. The imagine someone taking a screwdriver and starting to tighten that screw. Long-haired people can simulate this by grabbing your ponytail and turning it around and around and around to get the feeling (Yes, I have had a lot of time to think about it). The reason I panic is because this feeling is only caused by 2 things. One being the jaw being close to locking, and the last time that happened I spent 6 months folding hamburgers intro my mouth because it would only open 1,5-2cm. The other time this feeling comes around is when I've had dental surgeons injecting a mix of lidocain and cortisone into the joint. And this rarely happens to me at home, waking up, in my own bed.

So, how is it bad then to analyze the pain and pick apart the pieces? Remember the jogger's knee I was suffering from? It has been bugging me 24/7 for the last month or so. Being so used to doing what I do, I don't know if it aches anymore. I have no idea. I mean, I know the metallic/pressure-feeling I feel there is categorized to be pain, I just don't feel it. I know it wakes me up in the night, so something must feel at least bad, right? And I know the only comfortable position to sit in is resting my ankle on my knee and bending it to the side, but I also know I have to lift the upper foot down by hand when I want to get up because I can't do it on my own. And I realize all these things are because of the metallic/pressure-feeling known to be categorized as pain.

I'm in no ways immune to pain, no. And I don't really think I tolerate pain any more than the next person, it's just that you get used to live with these things. Odd, isn't it?

But it is bad because I'm not sure whether or not I should push the treatment of this stupid jogger's knee more actively than I have. If we can establish that it is pain, it isn't going away and it wakes me up for some reason, should I get someone to do something else about in than I already have?

I don't want to because of the following reasons:

I don't want to be broken all the time. I've had treatment to my stupid shoulder that broke when I was into competetive swimming. stretching, hot/cold-treatment, massage, 4 sets of teeth-pads, moulding, injections and finally 2 operations to the stupid jaw. I turn 25 this year, am actively hoping to get a prosthetic joint and don't want to have to seek treatment for my knee because I went jogging like 5 times last year.

Maybe it isn't that broke. If it was real pain, I could still feel it like it should be felt, hurting, right?

And finally. Experience has shown me that unless shit is broken, it don't get fixed. If it is only mildly broken, I will get treatment for it and it will just eventually stall things along so that it will take a much longer time to break so much that it can really be fixed, not only delayed. If I don't treat it now, by any luck it'll be torn to bits and pieces within a few months so that someone will cure it with an injection or once again cut me open somewhere.

Right now it kinda sucks because what ever it is that wakes me up and follows me around all day, is making me hang at the end of my rope. I don't recall when I would've been so pissed. The sarcasm has reached new levels and I am not far from telling a complaining customer who wants to get stuff free and without prescription just where they can shove it. If pushed enough I will do it for them.

If anyone of you had the energy to read aaaaaaall this, then don't worry: I have next week off.

Today was the day I was scheduled to meet Dr. Törnwall, the man without a first name if you judge him by the papers sent to me. He was 20 minutes late but eventually I still didn't get a parking ticket, so I forgave him. Not the most charming guy on the planet, but apparently what he lacks in charm he makes up for in talent. Turns out the situation isn't as bad as I thought. I have been told I'm the only one who has a jaw that grows shut, and he told me

"No. It's fairly common and 70% of the people who suffer from this are women. What we're gonna do is take an MRI and see where we'll go from there"

"Ok but what are my options, because I've been told that prostheses(es?) for jaws fairly often eventually crush the base of the skull."

"No they don't"

"Ok but see I was told that.."

"Yeah. They don't, they're safe, if you can ever use that phrase to describe prosthetic devices but you were probably talking about titanium prosthetics in the joint..."

"Yeah. Or... I remember it was metal."

"...but we don't use titanium. What we use is polyethylene and we would replace the whole joint with it, but let's not jump to conclusions. We'll send you a time for an MRI within the next few months and two weeks from that you'll schedule another time and then we'll work something out."

"Great! I know you said before the criteria for getting a prosthesis are pretty strict, but judging from those x-rays do you think I have a fair chance? I mean, the right joint is..."

"...not much, I see that. I'd say you've got a good shot at this. And even if you don't qualify for a prosthesis, we'll have to make up a game plan, because all this growing shut is partly because of scar tissue, and the more we cut you open the more it will grow back."

How fantastic is that! We have game plans and schedules and I might be able to get a little plastic in my face! Happy day! And he seems trigger-happy enough to slap me on the table and cut me up any day anyway :)

I think Dr. Törnwall might not be a woman. And he might be quite good. I saw an article today in the newspaper about a male Dr. Törnwall, at the dental- & jawclinic where I have my appointment. The article was about how he'd manage to grow a guy a completely new upper jaw in the guys stomach using the guys own stem cells. He had apparently lost his upper jaw to a particularly mean bonecancer.

For the first time in a long while, I'm excited and nervous about my appointment with people in this particular area of problem solving. What if he wants to grow things in my tummy too?!

Wow. Not a wink of sleep all night.
No wait, I must've slept a few winks because my head hurts even more than yesterday, so I must've clenched my jaw while sleeping.

Luckily, I received a letter on friday, stating that Dr, Törnwall will see me on the 15th of february. God I hope she isn't a woman.

Not anything against women in general, but I've become a bit of a misogynist with dental surgeons. The last consulting female doctor told me it was nothing, because there clearly weren't any bones sticking out of my ear. Nothing can be wrong. And even if you are experiencing some minor discomfort, remember that jaws usually are a lot less painful than dislocated knees, for instance. To which I bitterly replied that I had yet to eat with my knees.

(and turned out she was wrooooong. It was something, the bones were not far from sticking out and it was apparently a lot more painful than knees. Around here it takes quite a lot for doctors to admit "yeah, we maybe should've operated about a year - 1 1/2 years ago. Our bad,")

The weight being back to 58, it'll be interesting to see if Dr. Törnwall thinks it's nothing. I know I shouldn't have all these "what the hell do you think You can do?"-opinions before I've even met the person. For all I know, Dr. Törnwall might come up with a morphine pump something really good.

And if not, well, at least I'll be in killer shape come bikini-season.

Last weekend we went to a wedding. People really put their best foot forward for weddings. They came in their best dresses and gowns. Me? Well, I came in my best panther-outfit.

Meow