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My Story |
Oh well. I’m brave or stupid not sure which one………………………..
dailystrength.com chronic pain group
my e-mail
ralop0560@gmail.com
How do we talk with each other when our forums are closed?? Do we set up an e-mail?? I wish God would do something ’bout this.
MY STORY
I’ve been experiencing chronic pain since August of 2003. I was at first completely in the dark about why doctors were treating me as if I were a criminal, or a liar or something…. somehow God saw fit to put a lady friend in my life who understood the problems surrounding narcotic pain medications and patients and doctor relationships and how this sacred relationship between patient and doctor was being severely compromised by the so called,
“War On (prescription) Drugs.” I went on for a few more years being what I call “abused” by doctors who were frightened of chronic pain patients like me, and for good reason, although I was the one paying the ultimate price. I am still sickened by what has happened to the doctor/patient relationship, which in my belief is just as high up there in being a sacred relationship as that of the relationship between clergy and believer. I just don’t understand it and I believe there are many safer and more humane ways of catching the bad guy (whoever that is) and saving lives like mine.
My whole life has been turned up side down and is nothing like I foresaw my life to be when I turned 50 yrs old.
I was working and able to look toward retirement, having grand babies to play with, working in my favorite thing to do….. growing plants in the dirt. My significant relationship of 20 yrs has all but fallen apart for me not being able to be who I was before the pain began to dictate what my days would look like. I am having an exceptionally bad day today and so I am sure it is coming through in my writing. I do have good days and many of them because I found a real pain clinic with real doctors who believe in what they do… but we both must jump through whoops to be able to have this relationship. I will write more later.. I cannot sit in this position any longer. Please believe there will be a way to make it work and those who have died will not have died in vain.
14-Sept-2010
10:00pm
I’ve decided to date my story when I write so, you & I know what entry is from when. Less confusing for me at least. I cannot seem to write well tonight. I write my sentences backward all the time. At least it is less confusing for me. Any ways…….. I wrote some of the information after this post months ago. I will attempt to remember when I wrote the info, and then I want to try to write my story from the beginning, experience by experience, to take people who do not know what we experience through the whole d!*n thing. I know it also helps us relate and know we are not alone as pain patients. I believe the worst of my experience was feeling and thinking I was alone in this mess. When I found this web site by a Holy Coincidence (that’s what I like to call those kind of things) & I saw all the people including doctors and patients and family members of patients, and saw that my experience was similar in most respects I knew I wasn’t crazy, hadn’t died and gone to hell, (no exaggeration here) I began to try to not take it all so personal, (even though it is very personal) and I gathered together myself a support network of people of whom I could depend upon to advocate for me in educating and communicating with, and for me at my doctors appointments and began to experience less and less abuse in the medical community. I was educated myself on what was happening to my body and so I was able to educate better my family members and friends in my community. I also found a web site where I could gather support from other chronic pain patients and also be there to support them. (dailystrength.com)
At this time I am going through procedures at my pain clinic I would like not to be going through. Injections in my spine and radio frequency lesioning. I feel at this time I am expected to do what my doctors at my pain clinic feel may help me besides my pain medications.
I feel from my past 8 years experiences (which I will go into detail of here later) that if I do not allow the doctors to do these injections, which they believe in, and I am severely afraid of, then they will have reason to stop being my medical providers of the medications which help me to live everyday. I cannot live any sort of normal life without these medications. I am afraid of being forced to live the way I was before I was prescribed the correct dose and particular medications I have been taking for my chronic pain for the past 2+ years. I went through 6+ years of horrific pain and almost one whole year of those 6 years in bed all day most every day because of the disabling pain in my lower back.
My medications work very well as long as I don’t over do my life activities. My activities are dictated by my chronic pain level still at any given moment. I do not enjoy this limitation. I do not “enjoy” taking large doses of strong medications to relieve my pain level. Unless you are speaking of the fact that they do alleviate my pain level enough for me to experience a closer level of activity which other “well people’ experience daily. The medications I take allow these activities without the pain I experience being so severe. They do not erase the pain completely. The injuries and disease in my lower spine and surrounding area do not go away nor will they improve much. If I can get to a level of pain control with the medications and the injections and other procedures directed at the nerves sending the pain messages to my brain, I may be able to tollerate some specified physical therapy to strengthen the muscles around my spine in the area. This may help support my spine better and allow for more “careful” activity without such severe pain as I experience currently if I do to much of the wrong movement. (Like holding my grand babies, or long days out in the community, or the gardening I love, but can no longer do, or cleaning my home as well as I want to live, or camping in the summer, or driving long distances for travel, or shopping for longer than 30 minutes at a time, or ……. geeze ………….. the list goes on forever of the restrictions placed upon the quality of the life activities I am able to experience.
I still get upset when my friends or family members use certain word to communicate with me. These words upset me to tears. They are just simple mistakes in grammer and definition, but they are serious for me. For example; if someone says, “Hey, do you ‘want’ to go to the movies tonight?” Rather than saying, “Do you feel you are ‘able ‘ to go to the movies tonight?” I hear and see and feel the disappointment in everyone when I cannot go do activities I was able to do before my pain was chronic and disabling. I feel so much less than the person I was previously with everyone and it is difficult not to have these simple kinds of misunderstandings when words are not expressing my true reality. Want and able are so far removed from each other in reality in my world. They have become important, when before I wouldn’t even have made a distinction between them.
The injections I am getting at the pain clinic have helped. Sometimes for a long period of time sometimes for a shorter period of time. The second epidural I had 2= years ago allowed me to put my walking cane down for a year. The more recent ones have only relieved the pain a little.
These injection experiences have restarted severe panic/P.T.S.D. attacks in me which I haven’t experienced since the beginning of my sobriety journey over 20 years ago. I began to experience them in reaction to the shock I experienced when My mom died unexpectedly in 1976 when I was 16 years old. Her death was really only a part of the shock. She died after complications from back surgery. But, what complicated it was I was also abandoned by my entire extended family of aunts, uncles, grand parents etc.
You know………. I made this story in my profile public …………….. because I really don’t want to keep private the experiences I’ve had, so if someone reading relates, they can feel as if they aren’t so alone.
However I am also worried a little that if the wrong person got a hold of my written experiences they may take my words out of context and use them against me somehow. If I hadn’t had this happen to me a few times already in the past 8 years I may have not felt this way. But this is for another night and another part of my story.
God I am so tired of struggling against what is hidden away inside me. I found there is a good trauma counselor in an agency here in town. I keep forgetting to call and set up an appointment with him. I remember the day before each procedure since I found out about him.. It’s really something to watch from this view, at 50 yrs old now, the 16 year old inside me struggle to remain hidden so she doesn’t have to re=experience the trauma she went though then. but this has to end. I cannot allow a part of me to be in control when ever it feels threatened by something in the current time frame which feels familiar from a time which is so long ago it may as well be another lifetime.
i have enough emotional recovery under my belt from the past 23 years that I know I will be returned a piece of Heaven in place for a piece of Hell if I will but let go of it long enough for God and the Angels to transform it.
Procedure tomorrow …………. oops…… this afternoon at 1:30 pm. I will take the anti-anxiety medicine and Pray I do not go into hiding like i did the time before last. A prayer. Goodnight.
YES!! I figured out how to get in here and write more!! I have no idea how long it has been since I last wrote here in my story… the beginning above here as I write is certainly only a short basic bit of my story. Today is 20-August-2010 a Friday evening. My daughter and grandson just left. As I walked into the house I thought to myself and then spoke out loud to myself….. I do this too often in the eyes of the daughter I live with….I said to self…. I am not going to lay down and allow the depression and overwhelm of my reality and all I need to accomplish make me go down on the couch and “rest” and get nothing done again. I told myself I must get something done on my list like going through boxes of paperwork that’s mostly garbage, sorting, & filing the important papers…. clothes sorted through and I need to begin to pack.
I do still have a good pain clinic and great pain specialist doctors. The doctors I’ve been working with in past year and a half have been great so far. I haven’t been treated as a criminal nor a pain med “junkie” by them. Our great state did begin a strongly suggested new “protocol” for the doctors and pain clinics to abide by and I had to under go a sort of profiling for the first 3 months of treatment with the pain clinic. It consisted of getting 2 weeks of my medications prescribed at a time and seeing either my pain specialist or the psychologist every 2 weeks too. I was asked specific questions about how I was “feeling” and how and when and why and how many of my pain medications I took. I had to do this or I would not be able to be treated at this pain clinic by these doctors period. I answered all the questions and was a little annoyed by the every 2 week thing because I had to drive to the furthest south of the valley I live in, which took almost an hour to do. Sitting in a car for this long of a time is not helpful to the pain I experience.
I did it and was told by the counselor I had to see that he was very glad that I was honest about my 20 plus years in recovery and my 12 plus years sober from using anything to “get high or drunk.” He told me he respected it and I was so terribly relieved. I was nervous about telling anyone because the profiling is crazy out there.
BRB
I have been thru a few epidurals i my lower lumbar which is where most of the problems which cause my severe chronic pain are. I am to do my first Radio Frequency Lesioning in the lower lumbar this coming wed the 25th of Aug. and I am in horrific terror about going through it.
If someone told me I would have to have surgery tomorrow I would probably go off the deep end never to return, I am not emotionally or psychologically well enough to do this R.F.L. right now but they keep giving me anti-anxiety meds right before the procedures and expecting that to do the trick for me.
I am also dissolving my 20 yr so called intimate relationship right now and have spent 7 yrs of chronic pain with him blaming all the troubles between us on the C.P. or the pain medications or the kids living at home or the freek’in sky being blue…………….. and you all know the rest of that story. I have rooms of garbage literally to go thru to pack my import belongings and cannot do it as fast as a healthy person and it’s taking too long and I wish God didn’t have me mixed up with someone else who can handle all this crap cause He must He just must be mistaken. The emotional stuff with my back and my mom’s death is more than enough to deal with right now. If anyone else or anything else comes up I am sure to just lose it !!!!!!!!! and I am clean and sober 13 continuous yrs and I cannot runaway in any way at all so I really feel backed up in a corner and it feels really messed up. Really, really messed up.
I need a nap. I will try to get back on and see how you all are doing……
In Love Light Truth & Service
“Stubborn” TerrieAnn
ralop |
