I have been wanting to make this post for a while. I've been around here for several SH sites(yes, plural, sites) and have seen many members come and go for many reasons. There have been drama queens(males and females) that have annoyed me and folks that I consider to be dear friends now. I have disagreed with many members here but still can respect some of their opinions and some of their viewpoints. I am pretty darned sure that I'll make a few more people angry here with this post, but I also have the right to post here too, even if I don't plead for sympathy during this post.
So if you don't know me, this is a short summation of my story. I was injured at work and after trying everything I could think of to avoid surgery(epidurals, PT, meds, rest, work restrictions, new bed, losing weight, etc.) I finally accepted that I needed a two level lumbar fusion. Initially, my world went back to a hopeful state, but then many complications emerged from the initial surgery. If you've read any of my posts, you know that I think that BMP is the equivalent of the devil's saliva(except in rare cases), but that was not my only complication. Because of all of my complications, I have had many, many, surgeries in the past 2 years. I have had a PICC line for 6 weeks to receive daily antibiotics due to hardware infection. I've had hardware removals. I still have cages that can still harbor the dormant infection forever. I have severe back pain and permanent nerve damage that causes butt/saddle/bilateral leg and foot pain. I have arachnoiditis. I have had two different spinal cord stimulator trials(different hospitals, different brands) and will be getting a permanent one for the leg pain soon. I am not posting this as a "contest" for the most surgeries or whatever, I am posting this because I do not include any of this in a sig line and folks may not know my history. I certainly don't post in a sig line every surgery going back to a tonsillectomy when I was 2 years old or ear tubes as an infant(OK, I'm exaggerating here, but WTF do some of the conditions in some of these sig lines have to do with spine issues?) If it is relevant, sure go ahead so you don't have to re-introduce yourself all of the time, especially to those of us that have memory problems. But some of them, holy cow, you can see the ones crying out for an award for the most medical conditions, and frankly, I'd be embarrassed to post some of them. Except for a couple of times that were particularly low for me where I posted in Depression or Matters of the Heart, I do NOT want anyone's sympathy. I want to be seen as normal as possible. I want to be seen for ME and not for the limping gimp that I've become.
It's been two years since my initial surgery(and remember that I had lots of treatments before that) and really, I still struggle with labeling myself with chronic pain. I don't want to be seen as that, I want to be seen as ME. I now get the temporary handicap parking tags-I qualify for the permanent ones, but I don't want people to see me for that if I'm having a good day. If I get a temporary one, I can choose to use it if I need it and don't have to COMPLETELY admit to myself that this stuff is permanent. Yeah, may sound crazy to some, but that's one of my coping mechanisms.
I really believe that chronic pain sufferers go through at least some of the 5 stages of dying/grieving(but I mean it as accepting a chronic condition) of the incredible Dr. Kubler-Ross. If you are not familiar with these stages, they are denial, anger, bargaining, depression, and finally acceptance. http://www.ekrfoundation.org/eulogy.php
I am still continually cycling through some of these phases and will probably do it forever(well, that's sort of an acceptance that I believe I will always have chronic pain, right?
) Besides myself and my professional experiences, I also have personal experiences with family members in chronic pain. I am NOT labeling myself an expert in chronic pain, this is all my opinion.
The point I really want to make is that though I have real, documented, objective proof of pain disorders, there is a serious psychological component to chronic pain. How can there not be? Yes, early on one doctor did label me as exaggerating my symptoms, but I went to a group practice that actually knew how to read an MRI and discogram. I was upset because I knew I was not exaggerating, but knew I still needed counseling to help with my dramatic lifestyle changes.
I am someone who drags my ass out of bed some days when all I really want to do is lay there and cry. Some days I HAVE to put on my big girl panties and watch my kids ride roller-coasters, even though I know that night I will be crying quietly in the bed where they cannot see. If I didn't do some of these things, what would be the point in living at all? Some days I can't put on the big girl panties(literally, and have to wear pads) and admit to the hospital or be recumbent on the couch with my legs propped up trying not to crawl out and get the chainsaw to cut off my legs. Not a drama statement, that's how bad I hurt. I'm not confined to a wheelchair, but do use one on occasion or an electric scooter. Some days I just can't believe I went from super-mom, traveling everywhere with my husband, hiking, swimming, to THIS body. Sometimes I hate myself and I feel so guilty because I feel like I hold my family back-that's another reason I get out of bed most days, my kids mean everything and I've already missed so much.
When you reach this level of pain, it screws with your mind. I am pretty good if things are quiet at going to my happy place with progressive relaxation techniques. However, I also take an anti-depressant and have recently started visiting with a chronic pain psychologist and will be starting biofeedback sessions. This does not replace my other treatments, only serves to complement it. Sort of like if you get lap band surgery, you ain't gonna lose weight if you don't also change your diet and do other things too, you must approach any disease/condition from multiple modalities. I find it quite ridiculous that any real chronic pain person would think there is not a psychological component to their disease, and while they might not need what I need, any real chronic pain patient recognizes that the mind plays a big role in pain perception, tolerance, motivation, etc.
I'm not saying everyone needs to go see a psych doc and get on depression meds, I'm saying that if you do not recognize or get offended if someone suggests mental health help or a brain link to pain, you are either in serious denial, completely ignorant or crazy, or not in chronic pain and are just one of those drama queens/kings.
This is a long winded post(but it is MY post, not yours, don't read it if you don't like it, but I welcome adult discussion about it.) I've given a lot of support and sympathy to folks, so drama queens, don't label me as heartless. This is me sharing my story. A crappy thing happened to me one day, and now my life is changed forever. I've been so angry for so long, so in denial, so depressed, but I think I'm ready for the acceptance(tho not liking it very much.) This post is about ME. I am a person, I am a healthcare professional, I am a wife/mother/daughter, and I live in chronic pain every day, every second. I take meds and will get a scs, but I still have to accept that I need to take depression meds and counseling for now.
One more thing-don't ever post your pain is a 20 on a 10 scale. You might find me posting something explaining that 20 is higher than 10 and therefore not possible so you must be stupid because my kids could count to ten before they were two years old. That SCREAMS drama to me and if you tell me in the ER your pain is a 20, that SCREAMS drama to me too. And if your pain is a 10, how in the hell are you on the computer typing?
This is my story. I welcome adult discussion, but if you want to cry-baby about it, don't post in my thread.