ADVANCED TOPICS IN LYME DISEASE
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ILADS Evidence-based Lyme Treatment Guidelines

by: JessRN75

For those of you that know me, and especially for those that don’t know me well, I spend my life in Pain.  Not just a sore wrist, or a slight headache, I have excruciating, unbearable pain, all day and every day.  I take medications, use ice and heat; I am in LOVE with Tiger Balm (it's like Ben Gay on steroids).  I have tried acupuncture, chiropractics, and any number of pain relieving measures to try to quiet the storm.  In an attempt to keep me off narcotics, the doctors started me on anti-epileptic medications-Neurontin and Lamictal.  Well in the pain world they did little to help me, they did, in fact help me with the twitching and tremors to some extent.  What they really accomplished was making me more cognitively foggy.

Anyway, I do take pain medications; I am one of “those people,” that we talk about in the Emergency Department, except I’m not.  I am one of “those people” in the sense that I take pain medications everyday in order to navigate my way through life.  I am not one of “those people” because I go through the right steps to get my medicine.  I go to a single doctor who manages my regimen and performs routine urine drug tests.  But I questioned the medications I take every day.  So I stop taking the medicine and find that I am capable of nothing.  I cannot get out of bed, I crawl to the bathroom, and getting into bed is impossible.  My body stops performing because the pain works against me.  The only way to manage any quality of life; the medications are necessary.  If I want to spend time with my children, read a few pages of a book, do a couple rows of knitting, or write my blog, the medications are necessary. 

Even with the medications, the pain is not gone and does not restore my full abilities.  If it is a good day, I can cook my daughter soup and a grilled cheese sandwich; a 20 minute task.  At that point I must sit where ever it is I stand.  The kids are used to seeing me sitting on the floor in the middle of the hallway, in the front yard, or in the parking lot because my hips hurt so intensely I cannot stand on them any longer.  I spend my days wondering how long I can make it before I relent to pain medicine.  At work, I worked until I could not stand it anymore.  At that point I would leave, get into my care, take my medicine and make my way home.  At home it is until I have someone available to care for my children; thank God for babysitters!

The pain is the symptom I most want to dissipate.  Without the pain I can play with my children, clean my house, make my own meals, enjoy a party, and a number of other things I am unable to do at this point.  I impatiently wait for treatment.  This stabilization phase seems to be the slowest five weeks of my life.  I pray the treatment will at least relieve the pain, or most of it.  I want to be me again.  I want to stop saying the words “I can’t.”  I want to stop disappointing my kids and I don’t want my daughter to tell her friends that her “mommy is sick.”  I want her to stop saying her legs hurt too.  I want to be the Mommy I was two years ago, before the pain started.