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

Appreciating what we don’t know we have

October 7, 2011

Four hours and 10 minutes ago, I walked out of my office, not to return for three months.  It was very odd.  It was sort of like quitting a job, but not at all the same.

As I left I saw a coworker who was still working, promising she’d leave soon.  She works a lot of hours, and seeing her working made me sad.  I understand why she does it; I used to work a lot for the same reasons.  There’s the sense of responsibility, the pride in work well done, and other such feelings.  She is not forced to stay late, but she feels an obligation to get the work done.  I understand that.  Like I said, I used to do the same thing, but that was before.

For years I worked too many hours.  I’m not talking about 80 hour weeks (well, maybe once or twice), but I was working too much and enjoying life too little.  One of the good parts of illness is that it’s forced me to slow down and appreciate life.  Then again, I now feel too lousy to enjoy it as much as I could have several years ago when I felt better.

It’s frustrating that we don’t know what it is we could lose.  Even now, very aware of what I’ve lost, I can’t appreciate what I have.  I try, I really do, but I know that I won’t really understand what I have until it’s gone.  There’s a lot that I’ve lost temporarily, and I’m always grateful to get it back.  That’s a start.  But then there’s the rest.

As I walked out the door, I tried not to sound preachy when I suggested that my coworker enjoy life while she can.  She gave me that pitying look that we all know too well.  She thought I was just projecting my situation on to her.  Maybe I was.  But that doesn’t make it less true; she’s healthy now and should take advantage of it, because no one ever knows when that will change.  I wish I could have made her see that.

 

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Leave a Comment » | Decisions, Educating, Expectations, Limitations, Medication, Pain, Rants, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Pain: It’s all relative

October 4, 2011

It’s that time of year.  Some people are gearing up for Halloween, others are lining up for flu shots (and I suppose some might be doing both.)  I got my flu shot today for the fourth year in a row.  It’s funny to me how people get nervous about it.  If you’ve never had one, or if you get bad reactions, then I get it.  What amuses me are the folks who worry about the pain of the flu shot.

Then again, I guess I’m not really amused.  I’m actually jealous.  It would be nice to think of a flu shot as terrible pain.  I suppose that if you rarely experience pain, if you measure pain by a stubbed toe or hitting your funny bone (I did that this morning; it’s really not so funny) then sure, a flu shot seems bad.  I’m jealous, because I have so much pain so frequently that a flu shot feels like nothing.  Ok, it’s not nothing; I felt it and it hurt a bit.  My arm is sore.  Do I care?  Not really.  I know it will make it a bit harder to sleep for a couple of nights.  I can sleep through other pain because I’m used to it, but pain in a new location will throw me off for a bit.  And then it’s gone.  That’s the thing, we all know that it’s temporary.  I would so love to know that my pain and other symptoms were temporary.

So come on people, I know you can do it.  If you don’t want to get the flu shot because you don’t believe in vaccines or something, that’s your choice.  But please don’t avoid it because of the “pain.”  My guess is that one day you’ll experience real pain, and you’ll look back and wonder what you were so afraid of.  If you want it, just do it.  At least this pain goes away.

 

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Leave a Comment » | Expectations, Medication, Pain, Rants, Raves, Symptoms | Permalink
Posted by chronicrants

Bodies going bezerk

September 6, 2011

Any day can be unpredictable when you’re dealing with an autoimmune disease, but some are worse than others.  My guess is that today’s problems are worse because of my meds, but it could be the conditions themselves, or the weather, or just randomness.  Who knows?  I sure don’t!

A dog accidentally scratched me the other day while we were played.  It left a mark, but didn’t break the skin or anything.  The next day, there was a small bruise.  Today there are 5 bruises, some large, and they’re blue and sensitive to touch!

Sunday night I got what I thought were 3 mosquito bites.  The next day there were at least twice as many.  Today there are even more!  Maybe they aren’t mosquito bites after all?  Maybe my body is telling me something?

And then last night pain set in, along with some swelling.  Great.  It hasn’t gone away yet.

I was doing ok a few days ago, and now my body is going haywire.  I don’t know what caused it.  I don’t know when it will go away.  In the meantime, I’m treating myself to a night of tv and unproductive web surfing.  Productivity can wait until I’m feeling better.  Tonight is about relaxing.

Leave a Comment » | Expectations, Frustration, Isolation, Limitations, Medication, Pain, Rants, Symptoms, Unpredictable | Permalink
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