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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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
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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
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The real test

October 16, 2011

“What do you want to be able to do?”  

Several years ago I entered physical therapy.  This was definitely not my first time in PT, but it was my first time with someone who was able to help.  Early on, she asked what my goals were, what I’d like to be able to do in every day life (an excellent approach, by the way.)  I had recently become an auntie when my close friend had a baby.  My answer was simple: I wanted to be able to hold the baby.

Now, years later, I am an auntie to many more little ones.  While I can no longer hold the big ones (they’re getting so big!), I am able to pick several of them up briefly, just enough to get one out of a crib and such.  I didn’t think I’d be able to do that.  And I can hold the babies.  Today I held the littlest, not even five months old, and I wasn’t worried.  I had some pain, but very little.  And when she jerked to the side, as babies like to do, I simply adjusted my grasp.  I didn’t worry for a moment about dropping her – that simply wasn’t going to happen.

There are many ways to look at health status.  I could look at my inability to work, or my frequent fatigue.  I could consider my pain and my frustration.  Many days I focus on those things.  But today is different.  Today I am thinking about holding that precious little girl, how special it is, and how amazing it feels to do something that just a few years ago seemed impossible.  There are many things that I want to do in life.  For a little bit, while holding that little girl, the rest was all irrelevant.

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