Pain, pain, go away…

September 1, 2011

… come again, well, never

And just in time for the long weekend, the pain returns.  This sucks.  So much for lowering the steroids.  So much for the hope that Plaquenil might work.  I hope I can keep my plans for tomorrow afternoon.  It’s hard to know…. I may barely be able to walk.

Of all the many places I have pain, the toe pain is one of the more inconvenient ones.  Because of the pain in my wrists, I can’t use a cane or crutches, and a wheelchair is completely out of the question, so when the pain is bad, I limp a lot and try not to walk.  Combine that lack of movement with the steroids, and it’s no wonder I’ve gain a lot of weight.  Lugging around extra weight doesn’t help things, but it’s certainly not my biggest worry.

I had 3 other posts all planned out.  One is written, and two are composed in my head.  But then the pain, started.  I could feel it creeping up for the past two days, and then half an hour ago, it hit.  I know from experience that it won’t be going away too soon.  I just hope it doesn’t get worse too soon!  And I can’t think of anything else.  So tonight’s post is fairly self-involved, except I’m sure many of you know this feeling and may feel less alone knowing it happens to other people too.

So tomorrow, back to the higher dose of Prednisone.  Damn!  So close!

Leave a Comment » | Frustration, Isolation, Limitations, Medication, Pain, Rants, Unpredictable | Permalink
Posted by chronicrants

Get your flu shots while you can

August 31, 2011

Shots are very controversial.  I get that.  But for those who want shots, and who are at high risk (if you’re reading this, there’s a good chance you’re high risk) then it’s a good idea to get one.

Also controversial is the government’s role in healthcare.  That’s a topic for a different day.  Or maybe for 10 different days (I have a lot to say on that topic).  Regardless of what you think and believe, the government does play role in healthcare.  In this case, it plays a role in flu shots.

I just read that the state of Massachusetts is going to offer fewer shots this year.  In fact, it’s going to offer fewer than half as many shots as it did last year.  If you have health insurance, you won’t really be affected.  If you don’t have health insurance, you’re probably more in need of the shots, and will have more trouble getting them.  Great job guys.  Really, good going.  I get that times are tough.  They had to make budget cuts.  But when people are dying of the flu this season, maybe the idea of throwing that extra cash into the rainy day fund won’t seem so brilliant anymore.  I hope I’m wrong.  I hope these 14,000 shots suffice for all who need them.  I really, really hope I’m wrong…..

Leave a Comment » | Educating, Frustration, Medication, Politics, Rants, Symptoms | Permalink
Posted by chronicrants

Hurray for good docs

August 26, 2011

I’ve had a lot of bad doctors.  A lot.  “Bad” can be defined in a lot of ways.  For me, these include not taking me seriously, not fully listening to me, refusing necessary tests, and prescribing treatments that are unlikely to work.  And then there was the one who said I shouldn’t complain because there are people worse off than me.  I was in pain 24/7 at that point.  Oh, and I was 16 and scared.  What a jerk.  But I digress….

So I’ve had bad doctors, but I’ve also had some really good doctors.  The good ones make such a huge difference.  I spoke to my rheumatologist yesterday and was reminded again of how fantastic she is.  When I started the new med a few weeks ago, she told me she would be going on vacation, and to call the day she returned.  I left a message and she called me back later that day.  She took her time with me and didn’t rush, even though she must have been very busy.  She listened to everything I had to say.  She was surprised by a side effect I’m having, which she had never heard of.  I told her I’d found evidence of it online.  She assured me she’d look into it.  Based on past experience, I know she will.  Otherwise would brush it off, but she takes it seriously.  I told her I’d like to take a new Lyme test I’ve heard about.  She didn’t know about it, but promised to look into it.  Again, I’m certain that she will.  Her treatment suggestions are always well thought out and specific to me and my situation.  She orders every test that she thinks is necessary and skips the ones that she thinks aren’t (Checking vitamin D?  Yes.  MRI?  No need this time.)  This is how I would like every doctor to be.  She’s not perfect; she’s human after all.  But she does a great job, and does her best to improve my health.

So here’s to all the great doctors out there, who do all they can to make us feel better/less bad!

1 Comment | Kindness, Medication, Raves, Support, Symptoms | Permalink
Posted by chronicrants

Sleepless sleep

August 22, 2011

You know how sometimes you wake up after a full night’s sleep and feel like you didn’t sleep at all?  It’s annoying, right?  Well, the first day for me was annoying, but after a few weeks, it’s moved beyond that.

I had many ideas for posts today, and now I can’t think of any of them.  All I can think about is how badly I want to sleep, all the while knowing how unlikely it is that I will feel rested in the morning.  
I could go off the Plaquenil at any time, but I think it’s helping.  So far, it’s worth it.  But the crazy dreams are frustrating, disturbing, and exhausting.  So when is it not worthwhile anymore?  I think that’s a question that a lot of us ask ourselves often: when do the sides effects of the drugs become more palatable than the symptoms of the disease?  Or vice versa.  So far, it’s worth it.  One day it might not be.  
In the meantime, if I’m lucky, maybe I can go to sleep and forget about it for a few hours.  That would be nice for a change.

Leave a Comment » | Frustration, Medication, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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