Archive for the ‘The Whine’ Category

Whine Time

Sigh. I want to write something witty or clever or happy. But right now I am just not witty or clever or even all that happy.

This clinical is sucking the life right out of me. I adore the majority of the patients, but I’m struggling at bit with both of my CIs and even more so with my body at this point. My CIs and I just have very different personalities and styles. I’m getting nit picked to death on a lot of things and I’m tired of being told one thing only to have my CIs turn around and do the opposite. And never mind that their solution to something they disagreed on was just to make me do things differently for each of them. That’s perfectly reasonable.

But also, I am huge. And I know if I post a picture the responses are going to be that a) I’m not that big and b) I’m only going to get bigger and I am already aware of both of these things, so you’ll just have to imagine me with a jicama sized baby in my belly. But I feel huge. And it’s making everything tougher.

My job requires me to be in close proximity to kids for their safety. It requires me to be on the floor most of the day or chasing kids around when I’m not sitting. Both of these things are getting incredibly challenging and are only going to get worse. And I have FIVE MORE WEEKS. At the end of the day I hurt everywhere, like, I limp to my car. I haven’t cooked dinner in like a week because the idea of standing up for a moment longer after a full day of work sounds like the most awful thing ever. Gestating a baby and being on my feet all day is a lot harder than I ever understood.

I sent two emails to the director of clinical education to see if there was room to negotiate changing my clinical from 14 weeks to 16, both for my health and because those last 2 weeks I’m pretty sure I’m going to be completely worthless. But of course, he hasn’t emailed me back even though I sent the first email a month ago. And yes, I’m more than a little irritated about it.

I desperately want to be happy and glow-y and all the things I’m supposed to be right now but I feel totally defeated. I am exhausted in every way, shape and form. I still have potentially 5 weeks of this left and between my brain and my uterus, I’m just not sure I can handle it. But I also cannot handle the idea of making up time after having the baby and putting my entire life on hold even longer.

I feel completely trapped.

And yes, this is FAR from the end of the world. I am not lacking perspective. I may be a little over-hormoned, but I know that this isn’t horrific, it’s just making my days drag.

It’s making me pretty miserable and I hate that. I’m supposed to be obnoxiously happy right now and I’m just not. I’m dreading every morning, I’m hurting every night. I’m worried about what it’s doing to my uterus and my baby. And that there’s pretty much nothing I can do about it right now.

Blue Skies Fade to Grey

I’m struggling a little tonight.

Part of it is my fault, I went to bed way too late last night, so I am exhausted today. But part of the reason I went to bed too late last night is because of a huge increase in my headache level last night that came out of no where and made it really difficult to get all my stuff done before bed.

I was relieved when I woke up with more normal, baseline headache pain but that only lasted until around 2 this afternoon when it came screaming back. I’m so frustrated and I hurt so much.

It’s really hard for me to do the things I need to do when my head hurts this much. I can’t focus, I become more inarticulate than usual, I am groggy and I seem disengaged. And it’s not for a lack of trying. I want nothing more than to soldier on and do the things I need to do, but the pain is outrageous, it’s all consuming and it prevents me from being me.

I drove home today in misery, wanting nothing more than to be home in bed.

But more than that, I drove home wanting this to stop happening. I want answers, I want solutions, and I know that this is a little choosy beggar of me, but I want those solutions to not include another brain surgery (though if I was promised long term relief with it, I’d do it in a heartbeat). I want to have the normal, easy life that I used to take for granted. I want to not need a medical alert bracelet, I want to not have a medical history file that is thicker than most great novels. I want a life that does not include days like today.

Because the thing is, good things happened today, but I can’t even remember them. I can’t think back that far because the only thing I can focus any attention on is how much pain I’m in. How much it hurts and if there’s anything I haven’t tried to make this go away.

I’m miserable. And when bad days pile up, my stockpile of coping skills dwindles. I am not coping, I’m just doing everything I can to survive and hoping it’s enough. I’ve been given a clinical rotation that people would kill for and I feel like I’m wasting it. Like I’m unable to soak up all that it has to offer for me, as a student, like I’m unable to appreciate the opportunity because I’m busy treading water desperately just so I don’t drown.

I know this will all be easier in a few days when I’ve had more sleep and hopefully when my head has settled back down, but the unwritten fear is that this time my head won’t settle down. That someday the pain I have tonight might be my every day pain. It terrifies me. It keeps me awake at night because I cannot function when I feel like this. I cannot fulfill my roles as a wife, a friend, a student or anything else when I have pain like I have tonight.

I’m scared and I’m tired. And I just want a break. I feel like it should really be my turn soon. I’ve waited as patiently as possible for 18 months, hoping that eventually things would get easier, less painful. And they haven’t. I just need a break, a few days to enjoy a life that I used to know, a carefree existence that I wish I had appreciated more when I had it.

The corner

Everytime I feel like I might be turning a corner and things might be improving, the road straighten itself and moves that corner eleventy billion more miles away.

I was ready to face today. I was ready to start being upright, to deal with pain and get on with it.

I can’t.

I recalculated. I decided that I could go to school for half-days this week. I decided that I could make plans with my sister, who lives 10 minutes from campus so that if I needed to, I could jet over there and lie down for a while between classes. I had a plan. I was ready to turn a different corner towards normalcy.

I can’t.

Because my program director, who is doing what is smart and right and reasonable, has told me to stay home. All week. Unless I see my neurologist and she gives me a note of clearance saying that it will do me no harm to be back at school. So yea.

I am frustrated. Sad. Tired. Bored. Overwhelmed.

The program director, who I really really like, is working with me. She’s setting up videotaping for a few of my classes so that I can hear and see what’s being taught and not fall as far behind. She’s pushing all my exams back and reassuring me, but I cannot climb out of this hole of self-pity. I have never taken an incomplete for anything in my life. I don’t do incompletes.

This is not what was supposed to happen. This isn’t how this was supposed to go. This is not my life.

I need to find the next corner. And then I need to hurl my whole life around it before I miss my chance.

Bummed

The decision has been made.

I just can’t make it to Daisy’s wedding.

I’m devastated.

She’s one of my best friends.

And my head, my fucking health, is keeping me from going.

I hate that I called my doctor’s office and EXPLICITLY asked if this would be a problem.

I hate that in my gut I knew I should’ve rescheduled.

I hate that I am missing this.

I hate today.

I hate this.

216 kicks, whilst down

So I went to work today. But I shouldn’t have. The headache is a special kind of unbearable and I feel so run down that I could sleep for years.

Emotionally, I’m done. I’m run ragged. I feel defeated. I was supposed to go play beach volleyball with friends after work and then go to Dad Gone Mad’s book signing, both of which I was really REALLY looking forward to. But I knew I couldn’t. I knew that my body had already said enough and I had ignored it too long.

And now I’m in pity-party mode and it’s not pretty.

I’m angry and tired and upset. I’m angry because my body and medicine have failed me. I’m tired because it takes a surprising amount of energy to be in so much fucking pain. And I’m upset because I’m scheduling my life around my health. Around pain. It isn’t right and it isn’t fair.

I’ve preemptively called in sick for work tomorrow so I can rest.  Everyone there (and here, I love you all) is being really understanding, which is so appreciated. I just wish it didn’t have to be this way.

It shouldn’t have to be this way.

And when I finally got home from this heinously long day I found 216 spam comments here. TWO HUNDRED and SIXTEEN. What. the. hell.

And like 199 of them contained various synonyms or euphemisms for genitalia, which is super. So if you try to comment and it doesn’t go through, it’s because comment moderation is on because sometimes the internet is a butthole.

Sometimes life is a butthole.

Apologetically

When I left the Patient Blogger panel at BlogHer, I walked out feeling motivated. I walked out promising myself that I wasn’t going to apologize for telling you all my health woes. And here I am, barely a week later, getting ready to do just that.

I hate doing this. I know that reading about my headache isn’t interesting or usually funny. I know it’s dull and boring. But on days like today, it is a challenge for me to talk about much else. And sometimes it helps me to talk about it (don’t you usually feel better after a good whine? I do.). It makes me feel less like I’m suffering alone, in silence, and more like I have a community around me when I need it.

I went to bed last night with a minor headache. An inconvenience really. And I woke up with the same headache, only a thousand times worse. I managed a shower before realizing that work wasn’t going to happen. I probably could’ve managed to make it through some of the day, but the drive there was an impossibility.

I’ve had a lot of headaches, but today was the first time that I was truly leveled by one. I had double vision, I could hear the sound of my heartbeat in my ears and I was miserable. I am miserable. I called in for work and went back to sleep for 4 more hours, sleeping much longer and later than I have in years, maybe ever.

And when I woke up, the headache was there. It had not budged. And I had thrown medication at the headache before I went to sleep, but it was like tossing a tic tac into the ocean and expecting it to smell minty. Nothing.

So most of the day I spent lying flat on my back in bed or on the couch, trying to avoid anything involving movement, effort or energy. The only exception was when I had to go to my doctor’s office to get a TB test. A TB test I was apparently supposed to have done at least a week ago (we can file that under being-an-adult fail.)

The best part of the day was when the nurse asked me if I had any pain. And what did I say? I said no. It just never even occurred to me to say, hell yes, I’m in agony. That she could literally have split my head open in half and I would not notice an increase in pain.

In my mind, this is the way that life is. This is the way my life will always be and like today, I often forget that anyone cares about it (I don’t mean that in the pity-party way it sounds, just for the record) or that it’s worth mentioning.

I really do hate to whine here. I also hate that headaches monopolize so much of my life and time and mind (no pun intended). But I do, and they do. If I could be as fun and funny as I want to be all the time I would. If I could never feel like I need to write about a headache again, I’d be thrilled. But there will always be days like these, and I will probably always blog about them. I know it bores the bejeezus out of many of you, but I hope that sometime, someone reads this and feels much less alone.

Because chronic pain is a solemn, lonely road. And whether you believe me or not, misery really does appreciate company.

Yes, I’d like some cheese

I’d like to apologize in advance if this is your first time reading.  But also?  This happens sometimes, so you’ve been warned (the first time I typed, “you’ve been whined” and I almost left it because, dude, truer words have never ever been spoken).

I’m freaking out just a little.  And it’s a rather ironic freak out.  You see, I posted yesterday about meeting Valerie Jarrett and discussing health care reform and today I am freaking out about my health and health care.  Life is just SO damned funny sometimes.

So, we just moved back to California in June and I joined my husband’s health insurance (because I can’t buy a non-work or school associated policy to save my life…literally.  Apparently screwed up brain is a pre-existing condition.  Who knew?) and it’s fine.

Except, his hospital, the one that the insurance is through, is 30 miles from where we live and 60 miles from where I go to school.  The school that I’ll be at from 8 to 5, five days a week.  Well, okay, Tuesday and Thursday it’s actually 7:30 to 4:30, but still.  My school holidays are few and far between and most of them are on the same days that any doctor’s office would be closed.

Which leaves me in a big mother freaking pickle.  I can’t go to a doctor.  Namely, I can’t go to a neurologist, and I kind of need to have access to one because, I’m not sure if you know this, but I’m kind of a train wreck.  As it stands, there’s just almost no way I can see a doctor with my school hours, but it is a complete impossibility with my school hours and my doctor being a minimum of an hour drive (without traffic, which happens about as often as pigs fly out of my ass) away.

On the other hand of this mess, is that my grad school is forcing me to buy their insurance policy.  Because my private insurance has to cover all hospitals in Los Angeles and my plan only covers 20% of outside hospitals/doctor’s visits, so soon I’ll have double! the! insurance!  To the tune of an extra 1500 bucks a year.  Because I SO have that kind of money.  And I’m still screwed.

I know it seems weird that double insurance would leave me screwed, but just give me a minute to explain.  So Slappy’s insurance gets me all tests and prescriptions with very minimal out of pocket costs.  Considering that in the last two years I’ve spent approximately $12,000 in health costs (outside of my insurance premium), it’s really REALLY necessary that I have low deductibles and co-pays.

However, my school insurance has astronomical out-of-pocket expenses.  MRIs will hardly be covered, prescriptions will be expensive and a trip to the neurologist will require a referral, possibly every time I need to go.  So see, I have GREAT coverage at a hospital I can’t ever go to, and I have lousy coverage at the hospital I’ll be spending every day for the next 3 years at.

Oh, the fucking irony.

And more than anything else, I’m just sad about this.  I shouldn’t have to jump through these hoops.  Normal people can use a school based insurance without issue.  They don’t need to have an uber-specialist nearby at all times.  They don’t need to plan for the times they’ll have to call their doctor at their wit’s ends, willing to try anything to make. the. pain. stop.

I just wish that this didn’t have to be that difficult.  It shouldn’t be this difficult.  And I know I don’t have it the worst, of course.  But I’m 26 years old and I feel like the rest of my life is doomed to this same routine.  This same reliance on doctors, the same inability to live independent of health care providers and the need for prescription medication at the drop of a hat.

Yes, I want the insurance to work out, but more, I want it to not have to.

Thank God the day is almost over

I’m not thankful it’s Friday. I’m thankful that it’s almost not Friday.

You ever have one of those days that’s so lousy that you don’t even want to start over, you just want it to end?

That would be today.

And no, I won’t be elaborating.

(My crappy day and disposition aside, I will be posting a recipe tomorrow on The Kitchenettes and Daisy has already put the first cooking one up, so go check it out. It looks absolutely delicious.)

Soliciting Help

So, if you follow me on twitter, or have had to interact with me at all in the last 24 hours, you’d know that I am having a horrifically rough time with allergies and subsequently, my sinuses.

The big problem is that when my sinuses get congested, the pressure in my head increases, which causes a special kind of double headache, where my face hurts (yes, I know, it’s killing you too) and the back of my head feels like it’s going to explode. Or maybe like if it exploded, it would feel SO much better. Either way, sinus congestion = whole new kinds of pain and unpleasantries.

So I’m soliciting advice right now.

I have taken a 24 hour Claritin D, 2 tylenol and will be doing the shower/steam thing soon and am still in sinus hell. What else do I do for myself besides wallow in self-pity? Not that wallowing in self-pity is something I’m going to stop when I find a better treatment, but more like a supplement to wallowing in self-pity. Yea, what can I do WITH wallowing in self-pity, that will fix this?

Help me, or hear me whine. I promise the former is easier.

On Dieting

Yes, I’m going to talk about dieting. Rather, I’m going to whine about it. I just wanted to put that out there ahead of time.

So, on Mardi Gras day Slappy and I were introduced to a really neat iPod/iPhone program called “Lose It” which helps you count calories. You input your weight each day, tell it how many pounds you want to lose each week and it tells you how many calories you can eat each day.

It also has a vast network of searchable foods so you can input your meals, or you can create a recipe and store it in the program to use again. It also has a list of searchable exercises (including “sexual activities,” which, in case you wondered, is really not very aerobic apparently. Like 8 calories for 30 minutes. Not really worth it. I mean, not worth counting. Heh.) and when you do the exercises, it subtracts that amount of calories from what you’ve eaten.

It’s crazy amazing. Except that I TOTALLY SUCK AT IT.

That’s not entirely true. The first week I lost 4 pounds. However, the combination of eating Popeyes 4 times in 3 days and drinking my way through Mardi Gras helped create 2.5 of those 4 pounds, so it was perhaps a slightly skewed measurement of my awesomeness.

Since last week, I have lost .2 pounds. POINT TWO. I have stayed below my calories every day, I’ve exercised 5 days in the past week and I am plateauing. How does one plateau one week into a diet? SERIOUSLY. And I know I didn’t have a ton of weight to lose in the first place, but at the rate I’m going, I’m going to reach my goal weight sometime in July.

Because, you know, 12 weeks of losing .2 pounds a week is totally the same as losing 1.5 pounds in 4 weeks. Like, practically identical situations.

GAH.

It’s like I look at a snack and somehow the calories jump in my mouth. It doesn’t actually seem to matter what I eat as much as whether the scale seems to like me in the morning, and hey, it just never freaking does. I know I need to be patient, but guess what? I HAVE CONTROL ISSUES, a history of eating disorder(s) and I’m not controlling this. You can see how my brain is about to rip apart at the seams.

Honestly, I just want my freaking pants to fit again. It’s not even about the weight, it’s about not ripping the seat of my pants or not coming home with the imprint of a pants button permanently pressed into my abdomen. Well, and failure. I’m not a fan of failing, and yet, somehow it seems to be my dieting specialty.

Dieting skillz. I don’t have them.

Control issues? I have them. IN SPADES.

Welcome!
I'm Katie, a 30-year-old, wife, mom, former teacher-turned PT, who also had brain surgery in November of 2007. This blog chronicles my daily life, from mundane to crazy, often with far too much detail. Sit down, get comfortable and stay for a while.
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