Sunday, March 20, 2011

On Being your Own Doctor

I sure hope none of my doctors read this blog, because I have a feeling they won't like this post.  On the other hand, I wasn't getting a lot of help from them, and desperate times call for desperate measures, ya know?

My shoulder has been a big, throbbing, agonizing trial in my life; quite unfair after what I've just been through.  Yeah, cancer can be life-threatening and scary and time-consuming, but for the most part, it didn't hurt.  This adhesive capsulitis has been harder on my lifestyle in many ways, and that is mostly due to the intense pain.  Even the fact that I can only lift my arm inches high isn't the problem that the pain is.

I happen to have some strong prescription pain pills.  I have never once taken more than prescribed  - until this.  And yet, they didn't touch this sort of pain. It was like taking skittles.  In all my searches, it does seem that there is something about this particular injury that doesn't respond to typical pain methods.  I wasn't about  to ask for anything stronger than I take, so I resorted to hot baths, which gave me brief relief.  I even filled a sock with rice and spent every 10 minutes at work, all day long,  microwaving it and letting it rest on my shoulder, like a limp squirrel, to try to dull the pain.

Picture me, sitting in the Principal's front office, dressed in nice clothes, with a big, fuzzy sock of rice perched on my shoulder.  That screams "superb educational facility" doesn't it?

Lack of sleep has been a problem too, and coupled with the long days I've had to put in at work, my resistance has been low.  I actually called my doctor's office and begged for relief - for something to help me. Begged with tears in my throat.

No response.  Maybe they thought I wanted pain meds.  I didn't, I wanted a nerve block, a hammer to the head - anything.

I suddenly realized something.  I had leftover steroids from chemo.  Some people get relief from steroid shots with this disease (although my doctor said no).  I googled "oral steroids for adhesive capsulitis" and found some citations.

Hey, they'd been prescribed for me, right?  I'd taken them before and they hadn't killed me, right?

What's the harm?  It's worth a try.

So, I popped one.

The next morning, the pain was lessened.  I couldn't believe it.  I popped another, and felt even better the next day.

I'm on day 8.  My pain level is down from a 10 to a 2.  I even have regained some range of motion. I still can't change positions in my sleep, but when I'm still it doesn't hurt and I'm getting several hours of rest at a time.   I am starting to do the physical therapy exercises I was told to do when the pain reduced.  I think this medication helped stop the inflammatory reaction and  has pushed me past the worst stage, and now I can concentrate on recovery.

I know steroids are nothing to toy with.  I am taking them for 10 days, and then will taper off.  I'll take a half the 11th day, a half the 12th, a quarter the 13th and a quarter the 14th and be done.  I'll still have five left just in case that taper isn't enough.

I don't recommend that anybody do what I did.  I recommend that you go in to see your doctor and demand relief.  I recommend you be more assertive than I was.  My excuse: I wasn't getting the idea that anybody was taking this condition seriously, not to mention the misdiagnosis - but I also really didn't want to go in a third time and complain.  I didn't feel like I had the time.

So, I took care of it myself.   I'm self-sufficient that way. And, yes, a bit of a risk-taker.

Anyway, it worked.

It still hurts, don't get me wrong.  But, it's much better, I am not thinking about how much pain I'm in all day long and trying to smile through it.  Now I know I can recover.

The moral of this story?  Throwing old  medications in the back of the bathroom cabinet instead of throwing them away can sometimes pay off.

Maybe those folks on Hoarders are on to something.


  1. You know, I kept telling the doctor that I was in pain. Over and over, and for months. Finally, I had one of my regular appointments (every three months, I walk in there and play 20 questions with them, and then walk out with no solutions.) I was hammering my way through a pretty rough period in school, working, and trying to keep up with home while barely able to function because the pain in my legs, hips, back and neck was so darn bad. She asked me how the pain was. I said what I always say. "No. It seems to be getting progressively worse." I noted that the previous night, when I got home from work, I simply was unable to turn my neck. She was shocked. During the course of the conversation that followed, she accused me of not being honest with her. I was astonished. I pointed out that I've been complaining of pain for a year now. She said, "I did not know that it was that bad. You never said it was that bad..."

    I think I've figured out what it was. I have a high threshold of pain, number one. Number two, I am a 'grab a handful of guts and keep on going' type of girl. The fact of the matter is, I've been complaining about pain right along, but she looked at me, and in her own mind determined that it could not be too awful bad because I was still plugging along at my normal routine. The failure in communication was not me. I said what needed to be said. It was her ears that did not receive the information strongly.

    I guarantee you this thing. You go in there and tell them, "This is what I did and it helped." They will caution you mightily, but they will also be shocked that 'you did not tell them you were in that much pain.

    I listened to my own doctor and thought, if I'd flung myself on the floor and cried and gotten dramatic about it all, I'd have been helped much sooner.

    Sorry for the blog on your blog.

  2. You didn't hear it from me, but good for you! Blame it all on the docs who didn't take your condition seriously.

  3. One thing I've learned from this "cancer journey" -- hoard your drugs, especially the good ones!

  4. Glad you found something that helped your shoulder--I'm sure the limp squirrel routine got old after a few hours. I think so many people go to the doctor as soon as they sneeze these days, physicians can get desensitized to pain or other complaints. It's a shame we have to shout to be heard. I agree--sometimes it's just easier to 'doctor' myself!

  5. Ann, if heat is still helpful at this juncture, have you tried thermawraps? I get 8 solid hours of heat out of one, and it's easier than running to the microwave! Plus, it goes under the clothes, so no one knows that it's there! :)


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