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My Companion ‘til Death Do Us Part
I am a person with chronic pain, pain generated by spondylosis, spinal stenosis, degenerative disk disease, multiple levels of facet syndrome, osteoarthritis, migraine headaches and fibromyalgia. Until 1985, I was an assistant research professor at the University of Idaho. I reached such a level of pain and despair that I considered ending my life. I had some cyanide and the Merck Index to help me determine how much I needed to consume to end it all. Concern that my dear husband would be the one to find me is all that kept me alive during those dark years.
I am now the veteran of 4 spinal surgeries, toe joint replacement, 2 carpal tunnel surgeries, and a hysterectomy thrown in, just for fun. I have survived multiple rounds of epidural steroid injections and trigger point injections. I have used almost every antidepressant and nsaid made. I have consumed Midrin, injected imitrex, and inhaled oxygen. I have personally spent tens of thousands of dollars on physical therapy, procedures and equipment that is not covered by my insurance and my 20% copayment for doctors, medications and hospitalizations.
Two years ago at Christmas time, I had a major flare up of pain. Then, I had a migraine from hell. I went to my doctor and told him I was really at the end of my rope. Fioricet and Imitrex were not helping the headache and my body hurt everywhere. He knew that I had been depressed and asked if I had a "plan". I told him I did. He immediately sent me, by wheelchair, to the hospital to be incarcerated in the "safe room". He said that suicide would not look good on his record--or mine. I spent a hellish night in the safe room without benefit of pain medicine. I was given Imitrex and antidepressants. The antidepressant aggravated my restless legs syndrome and I could hardly stay in the bed. By morning I had regained my sanity sufficiently to be released, provided that I get psychiatric care. Still, no pain medicine.
On a return visit I told the doctor that antidepressants and anti-inflammatories did help, but not nearly enough. No pain medicine, but he did refer me to my neurosurgeon. He sent me for another round of lumbar and cervical MRIs. From there, I went to a pain clinic. Once again, trigger point injections, epidural steroid injections, and nerve blocks but no pain medicine.
Then I was referred to a physician for evaluation of sleep apnea. I can add that to my list of incurable conditions. There, I was given darvocet for restless legs. I transferred my records to this doctor. He looked at the most recent MRIs and said "Ouch, double ouch! You have my permission to hurt!" I looked him in the eye and said "And you have my permission to treat that pain!" I am allowed to use the darvocet for my pain.
I worked for the State of Idaho for 15 years. I felt I owed something to the people of Idaho. I found an organization called American Society for Action on Pain (ASAP) when I was checking out "pain" on the internet. I joined this internet support group where I was educated about opioid medications and chronic pain. I learned that less than 1/10th of 1% of chronic pain patients who receive opioid medications become addicted. I learned that "drug seeking behavior" in patients with chronic pain who are under treated is called pseudo-addiction. I learned that there is no ceiling dosage of opioids--it takes what it takes. I learned that opioids can be titrated to the pain and be given in smaller doses throughout the 24 hours to keep pain under control. I learned that there are time release forms of these medications.
After about 3 years on the list, I was given the opportunity to be the placement representative for the State of Idaho for ASAP. At first, I had little "business". I put a little blurb on my email signature line about ASAP, and I started receiving more requests for information. Then, I put up my web page which is mainly about my two hobbies--watercolor and beadwork. I put in a paragraph about my disability retirement, my pain, and ASAP. The flow of requests increased.
As a Placement Representative, I try to find compassionate
doctors for the pain patients in Idaho. I was given a list of 4 doctors
for the State of Idaho. Through my own experiences and conversations with
other patients, I added some from Lewiston. As nearly as I have been
able to ascertain, Idaho is a desert for chronic pain patients. I hear
the horror stories of folks who
have been injured on the job and are being harassed
and denied proper treatments by Workman's Compensation. I hear about bungled
surgeries, weird individual responses to treatments, the abuse and suspicion
with which folks are treated by nurses, physicians, and emergency room
attendants.
I have been a very passive person throughout my life. Now, I am writing letters to State Medical Boards (one of the major sources of problems for doctors who will prescribe opioid medications for patients), to governors, senators and representatives. I tell about my experiences. I ask for the enactment of laws that are compassionate to pain patients and which protect doctors who are doing a good job of treating patients, diagnosing, and documenting the need for the treatments. I point out what appear to be gross miscarriages of justice when good pain doctors are persecuted by their state boards, law enforcement agencies, and the DEA. I participate in two internet support groups. I celebrate with those who have found doctors that treat them with knowledge and respect. I commiserate with those who have, once again, been snookered by the system. And, I pray. I pray for our doctors. I pray for our list members. I pray for those who have asked for help. I pray that what I am doing will be found good in the eyes of our creator, and that I might be a channel of His love.
Need help with pain? Need a compassionate ear
to talk to? I can be reached at kandd@turbonet.com,
or at (208)882-2976. Do you know of a good pain doctor in eastern Washington,
Idaho or Western Montana who might be willing to take on some chronic pain
patients? I could sure use some help in finding them!
(c) KarenD in Idaho
kandd@turbonet.com
Visit my homepage http://sites.netscape.net/karendidaho/homepage
CoMoWa:
http://www.angelfire.com/wa/kristicomowa/karengal.html
