Let me tell you my truths. I started pain management back in 2000 something. And here’s what I remember.
I remember passing out, in my car, at the bar, while watching TV. As if I was on heroin.
I remember face planting the wall, and passing out in front of my kids. I had a black eye for over a week.
I remember staying up, all hours of the night, chain smoking cigs and burning holes in my furniture.
I remember not remembering. Ultimately costing me jobs and affecting every area in my life. I would get in my car, and have no clue where I was going.
I remember the constipation. Going weeks at a time without a bowel movement. Sitting on the toilet praying to anyone who could help me, and stifling my tears so my kids don’t know.
I remember crying in the shower. Giving a break to the people in my life.
I remember the anxiety. The restlessness. The inability to find a comfortable spot. The feelings of isolation.
I remember the Dr appts. That made me feel like a criminal, a drug addict and not important.
I remember multiple attempts to fix my pain. Injections, procedures, meds, and I remember that hopeful feeling I would get EVERY time. That this time, things would be different. Better. But they weren’t.
I remember being kicked out of dr offices for asking too many questions.
I remember my kids seeing me at my worst while I was struggling to do my best.
And in all of this, what I DON’T remember, are days without pain. Because they don’t exist. And on all the medicine, either did I. It’s all a lie. They can’t fix me. And I refuse to die slowly.
A lot of time has passed since I started this blog. I remember it was right after I was let go from my last job that I decided to start writing again. Sharing my experience as a person in pain. The past few months have been a whirlwind. Victories, hurt, struggle and a lot of joy.
I got my pump removed on Feb 10th. What I thought was going to be a small surgery with minimal recovery turned out to be 2 weeks of immobility and continued issues with withdrawel. My Dr assured me that because my pump was at a trickle for the past 3 months that I would not experience any symptoms. I beg to differ. I was on a med, every day 24-7 for over 3 years. I don’t think you just go back to normal the day you stop taking the med. I know my body, I am paying attention. Needless to say every day it gets better. I am less emotional, less restless, I still have very little appetite but I am eating right. The pain however, without the pump or other meds has been very hard to deal with. Still, I am dealing.
My Mother, flew down to care for me during my surgery.She lasted 2 days. I expressed my frustration after waiting 24 hours that I needed a new tape. That the tape she was using was ripping my skin and pulling at my incisions. I got no sleep, it was hell but she felt cooking and shopping and meal prepping for her diet were more important than my care. So she left, while I was butt naked crying on the bed in the only position I could stomach, fetal. She took my car and enjoyed her time here in Cali by spending time with her best friend and my brother and his new baby. My brother never once called to check on me. My Dad never once called to check on me. And my Mom, well you get where I am going. My sister, who suffers from the same back pain I do, and my best friend who has her own kids and life, came to my home every day. To change my bandages, check my incisions, help me get dressed and eat, and just overall make me as comfy as possible. After three weeks I started to lose my mind and I slowly started making my way out of the house. Now I am approaching the 4th week and I no longer have on the binder or bandages. I am still caring for the incisions and being careful but my recovery is coming to a close soon.
So in the last few months, I have reconciled with my middle daughter, spoke to my oldest daughter, and best of all I made friends with my ex husband. The ex husband I’ve hated for the past 12 years of our divorce. Thats a LOT of fucking energy. I know what sparked it and I don’t care how it happened. I am just happy to have my friend back, and to co parent these teens. I’ve also started speaking out on my support for medicinal marijuana, as it truly has saved me through out this ordeal. I hid my pot use for years, mainly because I chose to work in the lives of others. What a hypocrite to work at a rehab helping women to be sober and I myself partake in pot daily. But its my medicine. Just as a diabetic needs insulin and babies need breast milk, this is what my body needs in order to fight back against the pain. The constant pain. I choose to smoke pot and not take a shit ton of meds. When has that EVER ended well for me?
Which brings me to the last news of this update. My drug test. Once again, my Dr gave me a medmatch form to do a urine screen. I know why, she knows why but of course it wasn’t said outloud. Now that I don’t have the machine in me anymore, she can discharge me. I know it and it scares me. But I refuse to give up medicinal marijuana. I’ve done it for too long and too many times. So I had to falsify my test, used someone elses specimen. When I say I had an anxiety attack while waiting to be called, I mean I wasn’t breathing. And then when the temperature wasn’t correct, and I knew my test would be invalid, I walked out of the clinic and threw up. My nerves were SO shot, I had to surround myself with friends for the remainder of the day and I am a private person. It blows my MIND that I have to go through this, just to get my little 30 norcos a month. So my choice? Not get the norco anymore. And on these days I have break through pain, bad flare ups, I will have nothing but weed. I don’t see an alternative, its the bullshit legal system.
So that’s the jist of my life in the past few months. I am no longer a cyborg, I am looking for work and I am out being social again. Life is good.
I know its been a few months since I’ve written. And a lot has happened. I still have my morphine pump in me, but finally have a surgery date in Feb to have that SOB removed. I am only using norco as needed and lots of pot for pain management. My pain is in issue, my MRI shows progression. So one of the things my Dr’s recommended, is that I see a new neurosurgeon. I haven’t seen one in years, maybe there will be other options for me. Other alternatives than what I am currently doing or have tried.
I go to Sutter Medical center this morning, first time as a patient. I am seeing Dr. Fox in neurology, suite 501. I had about ten minutes to explain my life’s pain story, and with that info and only one recent MRI he came to the conclusion that not only will be not offer me surgery, but he has other patients with similar disc issues and they don’t have a morphine pump. That if I’ve tried all these other alternatives like injections, meds, physical therapy, pump implant etc etc and none of them offered me relief than what is the point of doing surgery?
So what you are telling me Doc, is the past 20 something years, I was just being dramatic?
Fuck you Dr. Fox. Nice delivery. There’s a lot of ways to say a person is fucked, but insinuating that this pain is somehow in my head makes you the crazy one.
That seems to be the spoonie motto at times. Waiting on Dr’s, waiting on meds, waiting on good news just. So while I am in the middle of hurry up and wait, I might as well acknowledge that I am still here. I am still fighting and I am still waking up grateful.
Its hard for me to let go and not be in control. I can’t work right now and I am not sure when or if I can again. I am spending hours trying to find help for xmas so my kids can have the holiday they deserve and so far nothing has panned out at all. Two of my kids still aren’t even speaking to me, and letting go of that one has been the hardest. I realize that its a teengers job to hate their parents but I never expected so much damn heartache. I often have to remind myself of the asshole I was when I was a teen. Juvenile hall, running away, a total disrespectful know it all. So if me and my middle daughter had an amazing relationship all the way until she was 15, this is apparently an accomplishment. Call me crazy but I think kids should always respect their parents but when the co parenting is lacking, the outcome won’t always be sunshine and flowers. Acceptance of not having control has allowed me to breathe. To really listen to my body and this fucking pain. And to not feel bad if I am having a bad day. Cause they happen. Life happens.
Today I am ok. I am going to be content in the hurry up and wait phase, and be thankful for the small victories. I got approved for $34 in food stamps monthly and that is a blessing in my eyes. Being this broke isn’t fun but I know how to budget, cut corners and go without. Hell I haven’t bought bacon or block cheese in years LOL
Be well. I am constantly writing in my head, and I hope what I share allows all to see we are not alone. We are never alone.
It’s been almost two weeks since I’ve started this mission. I am still only at a trickle of dialudid with my pump since it was decreased. I’ve stopped taking effexor for depression, promethazine for nausea, flexeril for spasms and topamax for my nerve damage. All I have is weed and some 10/325s norcos, which I only take when I can’t take it anymore.
I’m able to eat again. Sleep. I’m not so anxious, not crying every 2 hours. I’ve been SOCIAL. And I honestly feel happy. Happier than I was. Being depressed and in bed for months seems like a bad dream to me.
I’m getting my MRI results next tues from my PCP. He of course won’t really know my history, as my pain mgmt does. But it’s results none the less. I’ve put this off. It gives me fear, but I can’t move forward until I know what I’m really up against. I’m realistic. The mri helps me get into the Spine center at Uc Davis so I’m currently in that process.
I don’t know when the pump will be taken out. I know when I see my dr in 2 weeks I can answer with 100% confidence that I do want it removed. Am I in pain? Of course. I’m moving slow, I went out on Halloween and sat the entire time even though my spirit craved to dance. But that’s just it. I’m OUT of the house. I’m talking to strangers again. I’m grateful for the trees and the sun, the pain and this life. I was clearly very medicated, and it happens when our alternatives are so fn limited. So I’m gonna try this for now. One day at a time, not worrying about the fact I’m not working, and knowing that no matter what I’ll be ok.
It’s been one week since my pain mgmt lowered my pump 87%, getting me ready for extraction. In that week I’ve experienced more symptoms than I care to count. Today I’m getting an MRI, I haven’t had one since 2009. And while I’m scared, so fucking scared of what they are gonna find, I’ve made it this far. I will survive. I am truly getting through this with the help of a few awesome angels, and a willpower that can’t quit. I’ve been down this familiar road before. It just seems a bit older this time.
Good times for a change
see, the luck I’ve had
can make a good man
So please please please
let me, let me, let me
let me get what I want
Haven’t had a dream in a long time
see, the life I’ve had
can make a good man bad
So for once in my life
let me get what I want
Lord knows it would be the first time
Lord knows it would be the first time
I used to have a beautiful mind
With poetry, inspiration, songs
Like a treasure chest you dream to find
On an empty road in a field so long
The paper became my soul
Taking all the pain, the love, the loss
But the medications took their toll
No more words, no more vision, just a blur.
Today I tried to find it.
As if it’s a person or a leaf outside
I can feel myself changing, I can see the words forming.
How I’ve missed you, beautiful mind.