Monday, May 7, 2012

I have pain control!!

This month has been amazing. I have been able to do things that I haven't been able to do since I got sick. I was able to mow the lawn for the first time in ten years. I was able to enjoy a lightning storm for the first time in almost fifteen years. I am no longer a human barometer! I wasn't able to predict this latest round of storms because nothing hurt! My doctors and I have finally found a combination of medications that has me feeling NORMAL again. I'm still in shock. Here's another, "I didn't think this would happen in my lifetime."

We're in the stone age when it comes to pain control. Worse still, we have a "War on Drugs" that casts many helpful medications in a hurtful light. The medication that has given me my freedom back has a bad reputation. But it's a medication with absolutely NO HIGH. I can be on this medication, and it doesn't affect my ability to think or operate heavy machinery. It's methadone, the medication given to heroin addicts, and it works wonderfully on my neuropathic pain. The change has been night and day. I feel like a new person. I'm still in shock, because I can't believe this is real. It's as if my pain is simply gone. There's no side-effects. No fuzzy feelings. No la-la land. Just no pain. IT'S AMAZING.

The only drawback to this medication that I can see is the stigma. And if that's the only drawback, I'll take it! My pain has been under control, and I'm at a very low dose. There's no drowsiness, and the pain control is so complete, I've started doing land-based physical therapy. I was able to exercise for 40 minutes! In the past, at its worst, the pain has been so bad that my physical exercise was restricted to trips to the bathroom. I was stuck on the couch, in pain, for weeks. That was just last year. Now, I'm able to use a stationary bike for 7 solid minutes. Unreal. I'd be a fool to let stigma stop me.

It's not always 100%. I still have breakthrough pain from a number of sources. For the terrible, debilitating, ice-pick pain? I have a medicated lotion that works like a charm. I still have a narcotic medication for the break-through pain, but I haven't had to use it that much at all. The methadone is really doing the trick. That daily, grinding, soul-sapping pain that I lived with every moment, that I had to manage from moment to moment, is gone. I have FREEDOM again. I can make decisions, based on whether or not I want to do them, rather than whether or not it is possible for me to do them. I can use all this time that I've had, sitting on my hands, and actually go out and do things. And I can do these things at the pace of the people around me, instead of cut short all the time, by my body screaming at me.

I went camping. I slept on the ground. Usually I have to specify the type of chair I sit in so that it's comfortable enough for me to sit for more than thirty minutes. Sleeping on the ground?? That's like asking someone to sleep naked, on a bed of broken glass. You'd have to be insane. But I slept through the night, and in the morning, I didn't feel like I'd been run over by a truck, either (which was normal, even sleeping on a mattress). I was able to go sight-seeing, and then I was able to drive us home, which in itself is unreal. Usually the vibrations of the car set my nervous system on fire. If I'm driving, I also get the vibrations through the steering wheel, to one of my hot-zones: my hands. When I lived in Seattle, had a 4-hour drive (behind the wheel) landed me in the ER. I generally don't road trip unless I have to. This time, the travel was enjoyable.

My head is just spinning with all the possibilities. Life has opened up to me. My body still needs time to recover, but if I am steady with my physical therapy, this should happen. With time, I could potentially return to work. I'm practicing by increasing my workload at home, and my house has never been this clean! I have everything organized for the book, and I should be able to start a normal (rather than haphazard) writing schedule again. It has been ten years since I have been able to be this consistently productive. It feels SO good!!! I am able to be responsible like never before. It is such a comfort to my soul.

I want to throw a party... I'M BACK, BABY!!!

But most of all, I get to tell myself: I was right all along. It wasn't that I was lazy, or that I didn't want to work, or that I was afraid, or that I was being unreasonable. It wasn't any ulterior motive at all. It was just that I was in pain. REAL, physical, biological in nature, pain. I wasn't making excuses, or having delusions of illness. I wasn't malingering. It was absolutely real, and the moment we got me the right medication, I got BETTER. And it wasn't me drug-seeking, because the medication that works, has absolutely no high!!

At my party, I'm going to have a big ole serving of crow, for all my haters and non-believers. I'm also going to do the "I told you so" dance. ;^D

Life is sweet again.

Happiness in chronic illness is possible, but essential to that happiness is management of symptoms. If the symptoms are managed, you can learn to live with disease as though it's not there. However, if the symptoms are not managed, then at any moment, without warning, my awareness can be ripped from whatever situation I was dealing with, to the necessity of dealing with a symptom. Disease interrupts anything and everything. It does not care about sleep. It does not care about manners. It does not care about embarrassment. It does not care about safety or responsibility. It does not care. And it, by necessity, makes me not care, too. But it's the disease, not me. It is a world of chaos and vicious whim. Happiness is very difficult to find there. Manage those symptoms, and I am in a different world. The difference is heaven and hell.

The key to walking through hell is: don't stop.


  1. Really poignant post. I am glad to hear that you have found pain control and so many possibilities are now open to you. I have had recent improvements in my health due to treatment for autoimmune disease and being able to do the smallest things without disabling fatigue and pain feels like a gift everyday.

    1. "Feels like a gift every day..."

      I *know*!!! My roommate is giving me seriously funny looks because I'm so *happy* and *enthusiastic* about cleaning now! (It's because I finally *get* to! lol)

      Awesome to meet you ^_^

  2. This is good news for you and others who may have run out of ideas and options for meds. I am using supplements, diet and exercise to manage pain and other symptoms(fybromyalgia). I have tried prescriptions in the past and where I saw minimal results with maximum side effects I have decided against them.My good days are awesome and I'm glad to see you are having so many of them! Just be ware your body may "adapt" and at some point it will no longer be as useful, but hopefully that WILL NOT happen:) Best of luck.

    1. I know all too well about medications crapping out on me. I've actually lowered my afternoon dose, so that I can be on the lowest dose possible. That way, I can maximize the time I have to be on it. I expect to build up a tolerance, but whether that actually happens remains to be seen. Right now, I'm on the baby dose: 5mg 2xDaily (and only 2.5 in the afternoon). And I'm going to milk this for as long as I can.

      I've been on heavy narcotic before. When I was in my EPIC migraine, I was on 60mg oxycontin/Day, and that still didn't give me adequate pain control. My breakthrough days were miserable. I'm so happy now to have something that works, and *doesn't* make me loopy! It truly is a miracle.

      But I'll be careful, I promise! ;)

  3. I am so incredibly happy for you! Of course, I'm also incredibly jealous, but let's focus on the happy-for-you part. You survived an incredibly long, difficult period of your life and I hope that this new improved state only continues to get better and better. CONGRATULATIONS!

    1. Thank you!! I understand your jealousy, and I completely forgive you. I can still remember what it's like to think life could get no better than learning how to live with the pain. That's been my reality for a long time, as you say.

      Take heart and know that it is possible! Maybe not now, but time changes everything. We just have to hang in there until the miracle occurs. There are passionate people working on these problems, and amazing things are being discovered, every day. Sure, that's a small comfort, but we need all the comfort we can get, right?

      Hang in there, and you'll be in my prayers...