Back to the House of Pain

Last week, I went to my doctor for what should have been a routine appointment.  Our appointments usually follow the same pattern:  the doctor talks to me about stuff and refills any medications that need refilling.  We almost always discuss the same thing – my pain.  It’s not always the only topic of discussion, but it always comes up.

After being on the same medication at the same dose for a little over a year, she has suddenly decided to take me off of it, even though it’s helping my pain. 

At our first visit, she tried to get me a referral to a pain management specialist (a doctor who exclusively treats chronic pain, nothing else), but found that there is nobody in the area who accepts my insurance.  She said she’d treat my pain herself.  She seemed very laid back about it.  The things she said made me believe that she understood that EDS was just plain painful and that pain, unfortunately, does not discriminate.

She did give me the name of the pain management specialist she wanted to refer me to, and I wrote him a letter.  I received a phone call from his receptionist about a week later.  He thought I was interesting and wanted to see me in consultation free of charge.  He was a wonderful person – kind, compassionate, understanding, and very knowledgeable about EDS and pain in general.  Because my insurance won’t pay for any prescriptions he would write, he wrote a letter to my doctor with recommendations for medications that might help me.  If cost wasn’t a limiting factor, I’d go right back to him for my pain management in a heartbeat.  He and his staff are incredible, and I know my pain would be understood and not undertreated there.

My doctor said she received his letter, but she made no comment other than how nice it was that he was willing to see me for free (and I agree).  She is not prescribing the medication he recommended and I did not ask why.

When she first started treating my pain, she would emphasize quality of life, saying things like, “We can help make you more comfortable.”, “You may be on this medication for the rest of your life.”, and “I have to give you a pat on the back for how well you’re dealing with this.”

I told her that I understood that, even with the best pain management in the world, I would most likely have to deal with some degree of pain, possibly for the rest of my life.  I know that she is not a magician, she’s a doctor.  And when it comes down to it, she’s a person, a regular human being, just like me.  I was not expecting her to work miracles, but I was expecting some understanding, compassion, and, most importantly, consistency.

Things have changed.  Now, she says, “We don’t like to keep patients on this medication for very long.” and “You’ll just keep needing more and more.  You’ll be 40 years old and bedridden, disabled, and blaming me for putting you on this medication.”  I haven’t had a medication change or increase in almost a year.  I’m 24 years old and already finding myself stuck in bed because of pain.  How do I get people to understand that?

I can understand her wanting me to try other medications.  I think it’s a great idea to get some x-rays of The Big Offenders (the joints I have the most problems and pain in) to check to see whether or not I have any arthritis.  We already know I have osteoporosis in my hips and spine, and it would be nice to know if I have any arthritis we should be treating.  I’ll be willing to try whatever she wants me to try.

I’m not as upset about the medication as I am about the abruptness of the change.  There was no mention of this during my June appointment.  Her whole attitude, and even her tone of voice, has changed.  She almost sounded scared, somewhat frantic, at times.  I remember what I heard during my previous appointments, and this was not the same.  It was as if I was talking to a different doctor altogether.  She was so abrupt and different that I feel like I’ve done something wrong.  The whole appointment felt wrong.  When I asked about ordering the x-rays and starting a new medication that day, she said that she didn’t have the time – we’d do it in a month.  As she left, she asked if I had anything else for my “list of complaints”.  She probably didn’t mean for that to sound mean, but it bothered me slightly.  I realize I’m a pain in the ass, medically speaking (and probably in many other ways), but you don’t have to remind me.

She is a good doctor.  She listens to me and gets the job done.  She was probably just having an “off” day because she was so rushed – while I was sitting in the waiting room, I overheard that a few of her patients were late for their appointments, and she already had patients backed up.

But I’m starting to think she might have bitten off more than she could chew when it comes to taking care of me.

Still, I feel strange about how the appointment went.  It feels like we’re not on the same wavelength anymore.  I thought we had established some trust and some kind of routine, and this sudden change has left me feeling a tiny bit betrayed, or at least lost.  I’m a little irritated that she chose to change my medications as we’re going into winter – the time of the year when my pain increases significantly.  Also, with the pain under a little better control over the past year, I started doing more stuff, including getting a part-time job and considering going back to school.  I hope the pain doesn’t increase so much that I have to give any of that up (again).

Have I done something wrong?  What do I have to do to get some freaking respect?  Do I have to go in there in a wheelchair, crying to get someone to understand?  I sure hope not, because that’s not my style.  I am so tired of being judged, looked down on, and feeling like a bad person because of my pain.  Perhaps respect is just too much to ask for, especially considering I’m too young to have earned it.

At the risk of being thought of as a huge(er) drama queen, I’ll simply say that since I may be looking at a shortened lifespan because of the vascular nature of my EDS, I do not deserve to live that life with untreated, or undertreated, pain.  I wish I could find a doctor who got that.

This isn’t such a big deal compared to what happened at the pharmacy on Saturday…