Thursday, November 11, 2010

Four Months of This?!

My personality changes when I'm in pain.

"I'm tired," I told my mother on my way to my hematology appointment. "I want to give up." Suffering a serious case of doctor fatigue and fatigue in my life in general. A tiredness that goes much deeper than the tiredness of the body or the mind.

I shuffle through business cards, phone numbers jotted on notebook paper. An acupuncturist that someone "swears by." Choose carefully. Some aren't going to pan out. Some will be ignorant, some insulting. Really, the only cure for this is experience or if not a wide-open mind.

The holidays are coming up and they've already begun scheduling clear into January and February of next year, which means I get to spend Christmas with inferior pain management.

Without a PCP or treating doctor I can forget about pain management referrals and likewise for physical therapy or occupational therapy. And of course the handicap placard that started it all.

The idea actually occurred to me to try to purposely dislocate my left shoulder and hope they'd treat me with pain relievers at the ER. Or throw myself down the stairs?

These are the kinds of things that go through your mind when you can't sleep for pain.

4 comments:

Em said...

sorry your going through all this. i dont know what to suggest. we have different systems here in the uk. although health care is free, in my experience the treatment for eds over here is patchy.

you could try going on hmsa a hypermobility site here in the uk, or eds another site over here. maybe they could suggest some pain relief. xxxx

Yvette said...

Thanks, Em. Treatment over here I think is even more patchy. Or at least in my part of the country. I've been asking around. Lots of people have helpful tips for the little stuff, but there something going on with my hips that needs a doctor.

Elizabeth McClung said...

Yeah, pain changes, it made me into a bit of a bitch. I thought of going out and buying street drugs, but realized that was only a partial solution. I really hope that you can have basic pain control and 'breakthrough' pain control - I would send you muscle relaxors with codine only I think it might make your EDS worse.

Distraction and overstimulation is the only thing that helped me, like listening to a mp3 player on trance of heavy beat music to overstimulate and block the pain nerves a little - but for sleeping, that is the time of hell. Medicinal M spray to relax the pain clusters works here, but is legal here, I don't know if it is there. I hate knowing how bad it is to be in pain without help or hope and not be able to help. Can I help? Can you think of a way?

Yvette said...

Elizabeth, you're so right when you say sleeping is worse. The thousand little distractions that get me through the day all end when I lay down to sleep. What I've been doing lately is putting on a sleep mask, wearing earplugs and then waging an intellectual battle with it. When it's really bad, even the slightest abatement can cause me to fall asleep out of sheer exhaustion, so I often use everything in my arsenal...tylenol, lidocaine patches, antinflammatory gel and the recommended dosage be damned.

I don't know what to do. It's made me so unhappy and everyone around me unhappy. So pray for me or keep me in your thoughts. Soon, I hope I meet someone both willing and able to help me.