Posted: Jun 22, 08 10:08am
Hi, I'm Dar. I'm a Nurse Practitioner, alpaca farmer, mom, wife, partner, and Holistic Health instructor.
I'm also a neurosurgical patient. I was born with a severe form of the Chiari Malformation, which causes many of the same symptoms of Fibro, Lupus, MS, etc...plus in my case a few others.
I've had 9 neurosurgeries. Spent over a year in halo traction. Had 2 strokes. I've been on fentanyl patches, IV narcotics, various pills etc.
I had a gastrostomy feeding tube for 5 years and a central line for 3.
My first brain surgery was 14 years ago. My last one was 5 years ago.
I work on my alpaca farm, hauling hay bales and 50 pound bags of feed. I work with the animals, shovel manure, and just this morning I climbed into the hay loft and rearranged 40 bales of hay.
I live with someone who has a nasty form of Lupus (as far as they can tell - the tests keep vacillating) and my daughter who also has the chiari malformation and is struggling with the pain, fatgue and depression issues.
Here is what I know:
Most doctors don't know half what they think they do.
Most patients know (deep down in their guts) instinctively what is wrong with them and what their body needs.
It is so easy to fall into the pit of depression and thinking that you will always feel this way and nobody will figure it out and that's all your fault.
You won't always feel this way. Medical science marches on, and just because we currently do not have the diagnostic tools to measure what is wrong with your body, does not mean that we can not treat it, or that it does not exist. Your feelings are completely valid and realistic given the situation.
But things change.
You can recover and reclaim your life. No matter how debilitated you are now.
It ain't easy, but it is worth it.
For pain now, I use toradol occasionally, I have some codeine tablets sitting around if I need them, and a few other things, but mostly I stick to non narcotic pain meds. I am amazed that things have progressed to the stage where I can say that, but there you go.
I wish all of us a calm day filled with moments to smile about.
