Hello, friends.
I feel I have found a home away from home here an LWTN.
However, I wanted to make everyone aware that there is a support group for people who are having to manage pain due to being inoperable. It is not specific to having Trigeminal Neuralgia. It was started by one of my friends, Dr. Patty Verdugo, who has led quite an interesting, difficult, yet inspirational life. She is on the cutting edge of the cause in which I intend, because of my struggle, possibly to dedicate the remainder of my life to, getting Chronic Pain Patients the medicines they need without the struggle and red tape. The D.E.A. is serious about not letting scheduled meds fall into the wrong hands, and rightfully so. They are meant to treat PAIN! They are MEDICATION, not a party, and I am revolted by anyone who uses them for any other purpose than that which they are intended! People like this make it a challenge for those who need these life-changing medications to do serve their intended purpose. Perhaps, if they were more accessible, some Chronic Pain sufferers could once again be contributing members of society. It's quite a conundrum.
I noticed, and I hope anyone at the other group reading this does not mind me saying, compared to LWTN, the site is a bit rough around the edges and still looking for volunteers to help. Due to Dr. Patty's health status, I am sure that she cannot handle it all! My admiration is on and my hat is off to her, though. She has added "Trigeminal Neuralgia" to the list of chronic pain issues now. I reminded her that it was not listed when I first encountered the site. We also DEFINITELY have a place along with those who have been left under-treated by pain medications by the healthcare profession in the U.S.
I welcome anyone to disagree with me. Belief systems on this topic vary. I simply know what has helped me. Just because I am in pain, without the help of pain medication, does not make me an addict. Addiction vs. Dependency. I am not addicted to pain meds. I am addicted to not FEELING LIKE I WANT TO CRY BECAUSE MY FACE HURTS! I am addicted to spending time with my family and friends when I can talk! I am addicted to a pain free life!! If I had one wish for the healthcare profession, as a whole, it would be to de-stigmatize many medications which are viable options to give those their life back who suffer with day in day out, life impairing illnesses. We are "Living With TN", but some cannot. Absolutely every avenue, including the most powerful of pain medication available should be readily available to some of us who are not helped by other means, after a thorough examination of their symptoms. Ideally, counseling should also be made readily available to these patients as to how to keep their medications safely out of the wrong hands, where they could be diverted onto the black market.
What are Atypical Trigeminal Neuralgia symptoms, after all, if not Chronic Intractable Pain? Feel free to disagree with me. As you know from my previous posts, I am not opposed to the opposing opinons of others. I consider them food for thought, actually.
Myself, I would love to help make improvements and contributions to the site. Here is the link, if you would like to check it out.
http://www.chronicintractablepainandyou.org/
However, LWTN is the site I choose to go to for support. This site is simply a cause which is dear to my heart . It's been a long, scary ride for my family and I. They love me, and hate that the only thing which brings me back is Methadone. I have only seen a handful of members here who have been able to obtain this particular medication. That tells me that there is hope for me. I have hacked my brains out this month drumming up sourced literature breaking down the myth that opiates, specifically Methadone, have no effect on Neuropathic pain. Of course, I'd also be lost without Neurontin!!! That's for sure. They work synergystically. . . .and yes, I've tried sooooo many other routes. With all due respect, please spare comments directed at me regarding any therapies sans injections, Acupuncture and Motor Cortex Stimulation, which are three avenues which I have not yet taken. They tell me surgery is not an option for me, at this point. I have exhausted all others, and both me and my family know the particular pain med which works for me. (refer to my last blog).
I am 38 yrs. old. Like many people stricken with ATN, I am at the age when I should be focusing on career and children. Now, I want what helps and I want to get back to that, instead of typing because it hurts to talk! I am grateful for any life, but I know it can be so much fuller. I've seen it in action! Methadone gave me my life back in the summer of '09, and when I go to my pain management doc next time, I am going armed with my highlighted sources. I am going with prayers. If I don't get the results I want, I am going with a referral from my new GP to a new pain clinic. I will pursue until I get the results that my family need me to have.
I have never been a quitter. As a 23 yr. old, I pulled my family up by my boot straps, while coping with my late husband's (whom we lost in July of '06 after 13 yrs. together and two daughters) bipolar disorder, which was undiagnosed, and my own battle with Chronic Anxiety Disorder brought on by childhood experiences on my plate, by perseverance. If I could not find a job, I knocked on every door until I did. Once I was making my mark in my profession, I worked tirelessly to make things better in my workplace. I received promotion after promotion until we had gone from a trailer on his parents property, one old car, no telephone and no health insurance to a nice brick home, two late model running cars, good health insurance and modern conveniences! I have always been spunky! Now, I have channelled that into a new form, due to my condition. But, I feel I have something to fight for, to help, to enrich the quality of life for others. Scott and Ben, who created this site are heroes in my eyes, as is Dr. Patty Verdugo. I feel that their causes go hand in hand for ATN patients, which have virtually no track record of being cured.
A personal note I would like to share with the group, if I may. If you aren't interested, skip the next paragraph, because it is personal and it's only relevance is in letting you know the conviction of my passion in any work I do, including my advocacy for proper pain management. I have no PhD. I have a G.E.D. I want to endeavor to change that, so that my writings on Chronic Pain Advocacy have more levity. As of now, I only have am a technical school graduate, who began in Medical Transcription, but due to an unlimited ceiling pay and opportunity for advancement, wound up opting to temp in a mortgage office. So, I believe anything of worth, I learned from the school of hard knocks.
I worked, in my final years of employment, between 2003 and 2007, plagued and tortured by almost constant burning, crushing searing pain in the right side of my face, crunching #'s, and acting as a liason of communication, in an attempt to make sure that SOUND home loans were underwritten and approved. I was the buyers advocate, as long as they met the guidelines, as potential homeowners, lain down by the FHA, VA, Fannie Mae and Freddie Mac. I was diligent in fighting for change, if I could find a loophole around an unfair guideline. I questioned slack Underwriting, which would put individuals in peril to make their house note later down the line. Sometimes, I was hated for this. But, I did not want to see anyone suffer needlessly in the future because a Loan Officer, Realtor or anyone else in the industry proceeded in wanting an unsound loan going to the closing table for a few thousand dollars of commission, although I was also, at times paid commission or incentive for # of loans closed.. By late 2007, due to my not seeking proper treatment for my pain, as I was misdiagnosed with TMJ, and given only Diazepam and depression drugs (I tried them, but ceased because I was NOT depressed and they only made me a zombie) for relief, which a well meaning doc believed was caused by job stress and my husband's disease. I believe, the pain began presenting bilateral because I did not seek appropriate pain management treatment sooner.
Here is that link again, and it contains a petition that I wish all would sign.
http://www.chronicintractablepainandyou.org/
I am not affiliated with any organization besides the organization of my own thoughts on this subject, so I was not sent here to promote this. I am doing this of my own free will. I am not an advocate for opiate therapy for anyone who is helped solely by anti-convulsants, or has been cured by surgery. That would obviously, in most cases, be preferable. But, one must research surgery, as it has a track record of clearing Type I symptoms, and sometimes perpetuating Type II symptoms.
So, I will leave you all, my friends, with my usual disclaimer, if you find Type-O's, I apologize. I am praising God that my Neurontin, Oxycodone and Diazepam are currently working. We have some MAJOR work to do in my youngest daughter's bedroom today. I have a beautiful, typical 8 yr. old, if you are a parent you know how that goes, but I don't have time to proof this. Apologies.
My mind is always on this problem now, and any contribution I can make to solve it, I will, as I did in my former career.
The Healthcare Profession needs to wake up and realize that people with Chronic Intractable Pain need to be treated promptly by whatever means. Chronic Pain may lead to more other Chronic Pain if left untreated. More on that later, but the subject is addressed in the wonderful article our member "Red" sourced from Time Magazine in the discussions forum this morning. Thank you again, Red. I thoroughly enjoyed reading that very relevant and timely piece on Chronic Pain.
But, if you have time, please check out the site referenced above, by what I believe is the same web host, yet still in it's incubation stages. Advocacy of those of us who need pain medication to get through our days have a champion in Dr. Patty Verdugo. I felt she deserved the recognition that I give in this Discussion post and the referral to check out her site.
My heart remains here with Living with TN, as it is a wonderful source for our specific type of Chronic Pain. We lead the pack in it. Our brave souls face what is known as "The Worst Pain Known to Man".
I also commend the bravery and positive nature I have found in the individuals I have met here. I find here a group that tends not to give up. If something doesn't work, we try something else.
I am lucky that something actually works for me, a bit, and I advocate it.
As always, best wishes to all for compassionate medical care and honed coping skills which provide hope for the future.
Sincerely and God Bless.
Your friend with ATN,
Stef
(or 2.0, according to Scott and some others who know I had to rebuilt my page due to a glitch - nickname reminds me of a Star Wars Character. I'll take that. Laughs! Scott, if you're reading this, the force is strong in this one! Laughs!)