Understanding drugs

October 20, 2011

A friend was trying to comfort me.  She suggested that maybe there would be a new drug treatment soon.  I said there wouldn’t be because, well, there won’t be.

The process is slow.  If a scientist comes across some great discovery today, it will be many years before it is a drug that I could take.  And of course, even then, my doctor may not want to prescribe it or my insurance may not cover it.  But first there needs to be a drug that could help, and there just aren’t very many of those.

It was reassuring to see this article in the newspaper the other day.  Sometimes, like with penicillin, there are fortuitous accidents.  I don’t know about you, but I really don’t want to wait around and hope that someone gets lucky.  A lot of medications are used off-label, meaning they were developed to treat one thing, and ended up working well for something else (think: Viagra.)  And then there are the meds that are being used as they were designed.  I suppose I could do some research to figure out how many of these exist now, but I’m too tired or too lazy or maybe both.  The point is, there are a lot of medications that are not being used as they were designed.  That’s ok, but wouldn’t it be nice if it didn’t have to happen that way, because drug interactions were so well understood that scientists could design medications to treat any condition they chose?

That’s the dream.  Reading this article, it’s good to see that some people are pursuing this approach, and I sincerely hope they can make it work, and soon.  Now I know that doesn’t mean I’d get a drug that would help my conditions specifically.  I’m sure these methods would be used to treat more common illnesses first.  Still, after they treat cancer and AIDS and so many others, maybe, one day, they’ll get around to mine.

There are limited resources, and time continues to alternately crawl and fly by, but it’s encouraging to see progress like this.  Throwing money at research isn’t enough.  Politicians and argue forever about how to allocate funds.  At the end of the day, though, it’s about being smart.  Think about how much farther the dollars would go with greater understanding of the human body.  Think about what could be achieved!

 

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Leave a Comment » | Educating, Expectations, Frustration, Isolation, Kindness, Medication, Pain, Politics, Rants, Raves, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Cinnamon and nutmeg

October 19, 2011

Limitations are frustrating.  I can elaborate and justify and defend, but at the end of the day, this statement is simply true: limitations are frustrating.

I could write a long post right now about the many things I wish I could do but can’t.  I could write about the things I used to do but can’t.  I could write about the things I thought I’d still be able to do but can’t.  And at the end of the post, we’d all be depressed.  I’m sure I’ll write that on a different day, but not today.

Today I’m not focusing on the fact that I have been in my apartment all day because I can not currently work full time at my job.  It’s true, but I’m not focusing on it.  Instead, I’m thinking about how glad I am to have spent all day indoors while it’s been raining outside (and I’m sort of wishing I didn’t have plans to go out in about an hour, since I’ll probably get soaked.)  It’s cool out, which is great for my joints and fatigue and nausea, so I’ve kept the heat shut off and the windows cracked open.  A couple weeks ago I went apple picking, so today I made another dent in the huge pile of apples by doing some baking.  With the oven going, I threw the windows open wide.  The rain was loud, the wind brisk, the oven keeping the apartment from getting too cold.

Ok, so I can’t work.  I can’t work but I can bake (a skill I didn’t even have a few years ago!)  After all the baking, I figured I should take the trash down to the basement (glad I can still do that!)  When I returned, my apartment smelled amazing.  While I was baking, I suppose I just got used to it.  But stepping away made it so obvious: it smells of cinnamon and nutmeg.  It smells like autumn in New England should smell.  I can’t expend too much energy, but I can bake and read my book and knit a scarf-in-progress and take out the trash.  Some days this wouldn’t be enough, but on this rainy Wednesday, it feels just right.

 

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Leave a Comment » | Decisions, Educating, Expectations, Frustration, Isolation, Milestones, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

And the hip bone’s connected to the….

October 18, 2011

I never learned that song that kids sing to learn how the bones are connected.  I knew I should learn it, but I never got around to it.  Now, I’m trying to handle different kinds of connections.  The hip bone’s connected to the thigh bone, and all my meds are connected to each other.

I’m finally almost off of the steroids.  I know this is technically a good thing, since the long term side effects are bad, but the thing is, the short terms side effects are great!  Well, I’m not happy about the weight gain, but I LOVED the extra energy.  And the reduced pain.  And the lack of nausea.  Who wouldn’t love these things?  But the steroids do bad things to our bodies, so I’m going off of them, and all sorts of symptoms are coming back.  Among them, my other meds are getting messed up.  With the Prednisone going down, the thyroid med doesn’t seem to be doing its job right.  That will have to be adjusted.  And then the other hormones are off too.  I’m definitely getting symptoms which mean things aren’t right, but it’s not like I can just start changing things.  I need to wait a few more weeks to get the Prednisone out of my system, and that’s when it gets harder.  Every time I adjust these meds, there are side effects.  Even if the adjustment is right, my body freaks out for a bit.  I’m so glad I’m not working right now, because that would make it so much harder.  Still, I have to go back eventually, and I’d like to get this fixed first.  I wish there was a way to do it faster!  I just wanted it all fixed.  Now.  Meantime, my endocrinologist said that I was the second patient he’d spoken to today with hormone problems due to Prednisone and that it’s very common.  Well great, but that doesn’t help me now!

There are so many things we can’t control with these illnesses.  It’s frustrating when even the medications can’t be adjusted to compensate.  It’s logical and rational… and incredibly irritating.  I can only hope one day it’ll get better.

 

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2 Comments | Educating, Expectations, Frustration, Isolation, Limitations, Medication, Pain, Rants, Unpredictable | Permalink
Posted by chronicrants

The Pedestal Effect

October 17, 2011

I’m so excited to be a guest writer today at ChronicBabe!  Please check out my post on the pedestal effect, and then check out some of the other great stuff ChronicBabe has to offer.

 

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1 Comment | Educating, Expectations, Frustration, Insensitive, Rants, Support | Permalink
Posted by chronicrants

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