The Next Step

Monday, March 30, 2009

Because I'm on a roll with the whining...

This headache. Oy this headache.

It started before the xanax-tastrophe but has grown exponentially since then and has not let up for even a single moment. I have a reasonable threshold for this pain, but this is kicking my ass. I actually bothered to take something for it (usually I don't because nothing helps and I'd rather not take unnecessary drugs), but it was to no avail.

(Incidentally, 8 hour tylenol doesn't seem to be any better than regular tylenol except that its harsh warnings freaked me out enough that I only took 2, not the 4 I otherwise would've. So maybe 8 hour tylenol is better for my kidneys...)

I called my neurologist last week about the Pamelor (headache prophylaxis for those just joining us) snafu and he agreed that it needed to be stopped. Insomnia and paresthesias in my hands will not do, especially not at the base dosage. Unfortunately, he said we've kind of come to the end of the road as far as prophylactic drugs go. There are very few we haven't tried and the majority of them will have more severe side effects and are not likely to be more effective.

I've been searching for an adjective for how I've felt about his disclosure since I heard it on Friday and frankly, fucking frustrated is about all I've got. And really sorry for myself, which is probably not necessary, but there is anyways.

I did what I was supposed to do. I made the big decision to have a surgery that was supposed to change my life. And it did. But so temporarily that in the grand scheme of life I'm starting to wonder if it was worth it at all. I hate feeling this way, both physically and mentally. Both are exhausting and taxing.

It hurts to exist on this very earth right now. I'm soaking in a hot bath and I'm in misery. I have an exam that I had to push back to Thursday that I cannot study for because I cannot devote enough mind space to it to actually learn anything.


And my neurologist is trying, he really is. But we're screwed. We've done everything we're supposed to do and for what? I've taken truck loads of drugs, dealt with crazy ass side effects for what?

For nothing.

I am still in pain. I am still without answers of why the surgery worked for 8 months and then seemed to reverse itself. Is there something we're missing? Tethered cord? Ehlers Danlos? What do we even do now? I mean, what's the next step? We've used all the drugs and treatments and done all the scans, so what now?

How do we fix this?

Or is that the answer?

We don't.

We can't.

I guess we work on coping instead. Coping with a life of this pain. Coping with waking up in the morning with the same pain you went to bed with the night before. And the night before that. Taking drugs to help you eat while in the middle of a week long headache because the nausea interferes with your normal appetite. Taking Percocet just to get a night's sleep, even if not a painfree one.

What kind of life is this? I guess the obvious answer is one I will learn to deal and thrive with. If my choices are not living and living this life, there really is no choice at all. I will learn, but it will take time. And probably a lot of whining.

So, you know, get used to this place being pretty boring.


Unknown said...

Whining is perfectly acceptable, in my opinion - but that could be because I do plenty of it myself.
Hearing the docs say "I just don't know what else we can do" and beginning to talk about learning to DEAL with the pain as opposed to making it go away just... sucks.
New to your blog, so don't know the whole backstory, but just wanted to offer some cyber-sympathy.
Dreading going to sleep at night knowing you're going to feel just as bad when you wake up becomes frustrating, to say the least.

I hope another option for treatment presents itself soon.

Anonymous said...

I don't know the whole background, but have you thought about coming to Johns Hopkins? I referred myself there recently and boy, oh boy, are they good. Granted, I went for RA, to get a 2nd opinion on a diagnosis and whaddya's likely I don't have RA after all. I've never been to a facility so freakin' good and thorough. Just when you think you're at wits end, these people do not give up. Best of luck with the headaches and med trials. I truly hope something yields you some relief ASAP.

- Monica

Ness said...

Katie, I'm so, so sorry this is happening to you. I agree about going to Johns Hopkins or Mayo or somewhere. There has to be help for you. You owe yourself to stay on the quest for freedom from pain. I keep you in my daily prayers.

Sue G said...

If reaching out to share your life--the good, the bad, and the ugly--is whining than I suspect all any of us do on a daily basis is whine. And we don't. You don't. You are misfiling what you are doing by giving it a descriptive word that has nothing to do with the reality of your blog or your life.

So I will enlighten you. :-0

You live with a life altering medical condition, and you do it with grace and with humor. You work at a job you now know is not for you, yet you show up, you give 110%, and you do it whether you are having a good pain day or a bad one. You are a relative newlywed married to someone attending medical school--one of the most difficult things to have to deal with as a newlywed because of the hours spent studying or away from home--and yet you do it, you support him, and you give your marriage 110%. You are also a student yourself, and you don't just show show up and give it 110%.

Katie, you're living a life right now that has great purpose but is not possible without grit, determination, a great work ethic because it requires so much of you ALL the time. There is no respite. Even without a debilitating medical situation that would be a tough road to travel. But every day, you get in the car (or on the roller coaster) and you go for it. You get it done.

People who whine are people who sit back, do nothing, and then complain about what everyone else is doing. That is not you.

I would say you are doing the best you can, but the truth is you are doing more than your best because you ask more from yourself than anyone else ever would.

Sometimes a person just gets sick and tired of feeling sick and tired. I'm proud of you for being honest about it.

Anonymous said...

Can't believe there isn't something else that can be done!
Continuing to pray in Seattle!
Psalms 27:1, 4-5 The LORD is my light and my salvation; whom shall I fear? the LORD is the strength of my life; of whom shall I be afraid?...One thing have I desired of the LORD, that will I seek after; that I may dwell in the house of the LORD all the days of my life, to behold the beauty of the LORD, and to enquire in his temple. For in the time of trouble he shall hide me in his pavilion: in the secret of his tabernacle shall he hide me; he shall set me up upon a rock.

Prayer Bears
My email address

joanne said...

I can't (really I can't cause I don't know how) say it any better than Sue G.
so whine away if you need to...we'll be here thinking of you and praying for an answer. Hoping for relief...

Ali said...

Having a good old whinge is totally what having a blog is for! I have a chronic pain condition. It has it's ups and downs but it looks like I will be this way from now on, for the rest of my life.

Not the same as you but still, I just wanted to say that pain does suck and there are moments, days when it feels so oppressive and overwhelming that you're practically buried under it and days where you're right on top of it but you WILL manage. I hope you are able to find something to improve it soon.

terrifik said...

Well, its just so obvious. Its time for a head transplant. Start looking at the photos in the obits for a donor head you wouldn't mind facing in the mirror. Make sure they were sane and didn't have headaches.

Jess said...

Sue G. said it all perfectly. I also second (or was it third?) the opinion of going to Johns Hopkins or at least contacting them to see if they have any recommendations on what to do. I can't believe that it just ends here. There has to be something else that can be done.

Until then, "whine" away! I guarantee I'll come back to read your blog. :)

Marin said...

If you were in front of me right now, I'd tackle you with a big hug. Which might make the headache worse, frankly, so maybe I'll reconsider than hypothetical plan.

Also, talking honestly about your medical conditions is not whining. Not even close.

stacey said...

I was going to ask about going somewhere else to seek help. No one should have to live with that kind of pain.

Sharon said...

Chronic pain sucks. It's still a life but it's not a whole one.

My warmest regards. Sharon

Flea said...

I'm really hoping and praying that a new neuro in CA will have answers the NO doctors don't. Something. Anything. Are you collecting every last scrap of data so you don't have to start from scratch when you move?

Amber Rae Paulson said...

I, too, have Chiari 1 Malformation. And Intracranial Hypertension. And Orthostatic Intolerance/ POTS.

AND AND AND Scoliosis. And Nominal Aphasia with use of lots of Neologisms. And I am rumored to have Lupus, if not just an unspecified Auto Immune.

NO ONE around me understands. Not even in the same country as understanding. It's like how we in American know about some of the customs and dialect in UK, but we really have no idea what it is like because we have not grown up there.
There is only so much understanding a healthy person can have.

The people surrounding me say the most fucked things, and it makes me want to punch. Things such as " how did you take all of those percocet/tramadol/soma/vicodin already" or "you take too many pills. it's okay to be sore or hurt sometimes" and I have to bite my thing litertally to keep shut up. Like, oh really? It's okay to be sore? Oh, I didn't know!! Oh, but your soreness is from working out too much at the gym, right? Well, is your brain in your neck? Does your heart stop beatin when you stand up, or sneeze, or turn your head, or blink?? OH DIDNT THINK SO!

I mean really. My list of limitations goes on and on, and no one around me gets it in any way. I suppose bc I don't look "sick" (just bony skinny and pale with glazed eyes) that I am OK. Or that bc sometimes, my constant headache is just at a lower level of pain, and I can actually leave my house. Or hear you. Or walk down stairs.

I feel you and your pain to the Highest Level. Vent to me, if you ever want to. I know I could certainly use the reciprocation.

(Look how well I did on the language in this comment!)

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