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
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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
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

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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Leave a Comment » | Expectations, Frustration, Isolation, Limitations, Milestones, Rants, Raves, Symptoms, Unpredictable | Permalink
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