Friday, June 17, 2011

"Sarah, you don't have to be in pain."

Nobody has said that to me in this whole four years.

I told Dr Z, the pain specialist, with tears rolling down my cheeks, that I didn't actually believe him. That there hasn't been a day in over four years that I have been without pain.

He is a gentle, special soul, this doctor Z. I had seen him two years ago before my PVNS surgery, and at the time he suggested I start with MIR- morphine immediate release. I took the dose, and it was terrible for me; the room didn't stop spinning, and I felt awful until it wore off. After that, I didn't follow-up like he told me to. I decided to wait until after the PVNS surgery to see if it relieves the pain.

Then I just let the whole thing go. It wasn't the right time for me, things were so unstable still.

He remembered me, saying it is not possible to forget a case such as mine.
Again he listened completely, and I feel he really understood me and the day-to-day struggles I face with pain. I even explained about the migraines and the "Rizult" migraine medicine I tried yesterday.

After getting it all out on the table, he made his first suggestion for a pharmacological plan. Again, Dr Z. was boosting my optimism about finding a solution; he reiterated that pain control is far from an exact science. If one thing doesn't work, we can try another. We need patience, but we *will* find a way out of pain. I had heard him say that two years ago, but I wasn't ready to admit that my pain will last long enough for us to do lots of experimentation to find a solution. I wanted to believe that taking out the PVNS tumor would solve the problem.

Pain is a hard thing to accept when you are thinking about long-term. You want to believe that what you are feeling will not really be long-term, and the pain you have now will go away on it's own soon enough. It's like, admitting you need to take care of something is to first admit that it it *yours* to take care of.

Well, this pain is mine to take care of. We're joined at the hip. (got it? joined at the hip... got it? hehehe)

So we are starting a regimen of Methadone as pain control.
I have never taken that, of all the narcotics I have taken. He said that if it works for me, we would eventually lower the Lyrica.

I learned some interesting things about Lyrica, too, from him. Apparently, it is a medicine which is released into the body by the kidneys. It isn't processed by the kidneys, but they deliver it. So, if there is lowered kidney function, the Lyrica will not get into the bloodstream as effectively. Then you'd have to raise the dose. Hence... me.

I had to go all over town to different druggists to find this Methadone syrup. Robert and I were having a bit of fun with the scenario that I was drivin' all over this city lookin' for my Meth. :-)

We are starting on a very, very low dose. He prescribed the liquid form so we can control it carefully. Dr Z wrote me a schedule of when to raise the dose and by how much.

I took one cc today. Didn't taste too bad, and I didn't feel any effect from it at all. He said I wouldn't, but we are just building up to an effective dose.

I am going back to see him in ten days for an update.

Like a near-sighted person strains their eyes to see without their glasses, I struggle to believe that one day I could be out of pain. I can barely make it out, it's so blurry. But there is something there. Some grainy form of pain-free optimism.

Even as I wrote the words "pain-free optimism" it felt just... fake. Like I was writing something entirely fake.
Well, as they say, "fake it till you make it"!


  1. Edna wrote: "It sounds like you have connected with someone who understands what you have been going through, and more importantly doesn't think it has to be that way. Obviously this is the right time for you to deal with the issue. Positive thoughts heading your way."

  2. shavua tov! maybe this is the yeshua you are seeking! we the readers get soooooo excited by hearing that maybe this medicine will relieve the pain. but you need to take day by day, etc. may dr. z. be the right shlaich. (messenger). wishing you a pain free week! please keep us posted! rochel.