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 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.
- Lumbosacral Neuritis / Radiculitis
- Lumbar Disc Displacement
- Lumbar Disc Displacement with Myelpathy
- Lumbosacral Spondylosis
- L1-2 2mm circumferential disc bulge
- L3-4 2mm circumferential disc bulge
- L4-5 disc disiccation and disc space narrowing. 5 mm broad based disc bulge with central prodimance. This indents the thecal sac and narrows the canal. Facet atrophy greater on the left than the right. Narrowing is greater on the right than the left.
- L5-S1 disc space narrowing. Modic type 1 and 11 endplate degenerative changes surround the disc. 5 mm disc bulge with central and right parasagittal predominance. Superimposed marginal osteophytes present. Neural foraminal narrowing bilaterally and bilateral facet atrophy
- Shmorls Nodes ( sheurmanns disease )
- Disorders of Sacrum
- Myalgia and Myositis
- Myofascial pain syndrome
- Fragmentation due to a car slamming into me in 2009
It will be interesting to see what an updated MRI reveals. This isnt even all of my diagnosis but its what I could gather. After a while it just starts to become jargon and medical terms. My pain has certainly increased. I can see and feel the changes in my body and the things I was told would happen, aren’t ALL coming true, but I’m certainly not the same person I was 5 years ago.
Some body save me from myself. I’m really wondering, how did it get to this point? And then I remember. Oh ya, I’ve been a spoonie since age 11.
I’ve had a morphine pump since march 2013. It started to affect my memory about 6 months in. After about a year, it got really bad. So bad that I started withdrawing socially. It affected me at work, basically every fn aspect of my life. The only comparison I can give thats close to it is alzheimers. It was severe, it waa scary and I honestly thought it was my brain and not the pump. So for months I begged for a brain scan, a neurology appt. Went thru several appts and hassles on that. The end result was my pain mgmt offered to change the med in my pump to dialudid. I was already on a low dose of morphine, but taking 6 other meds, in a world of pain and now in a deep depression for the first time. I had heard dialudid worked well so I figured it can’t be worse than what I’m at. I gave it a month. I basically slept for a month. I lost my job, my kid moved out, can you see my time line slowly plummeting?
I get that I gave more spine conditions than a normal person. I also know that they have exhausted all procedures, meds, methods, and the pump was my last resort. I got it because I didn’t want to be high on meds. Instead I’m a fn mess, sick, can’t eat, sleeping all the time or not at all, unable to work, depresses anti social basket case. I’m not the same person. I can’t tell if it’s all the meds, or the compound of shitty things happening in my life. But I feel in my heart, I don’t want a machine in me going 24-7. There has to be a better way.
So my dr lowered my pump to a basic trickle. And what I’m feeling is like Mfn heroine withdrawel. I used to work in a woman’s rehab. Before my disability got the best of Me and worsened, that was my career. I’m well awaRe of opioid comedown. I’ve seen every drug withdrawel there is, and this isn’t pretty. It’s one of the worst. I’m at the level for pump extraction but my dr wants me to feel what it’s like at this level before making a decision. Meaning, she wants me at maximum pain. I understand, it’s not a small surgery. It waa weeks of recovery time and two scars. I’m on day #2 and I’ve dry heaved, cried twice but I managed to go pump gas and get coffee which is HUGE. I have to move today, they are sending movers at 12 and I’m all by myself so I’m going to try and just sit here and give orders because my energy level is negative. My pain is a 12, but I am feeling less shaky than yesterday. This move has taken so much out of me, angry because I’m being forced due to water issues and I’ll be glad when it’s done.
I haven’t has an Mri since 2009. Not sure why, fear perhaps? The uc davis spine center where I am requesting to go requires a new mri, so both my pain mgmt and my primary have put in referrals for one. Sadly they are both on the same page that my conditions have worsened and that it is time for me to seek other alternatives, at uc davis they specialize in my conditions. So the next few months will be rough. I get to taper off dialudid, go down on my topamax, I’m going off Flexeril, all to determine what side effect is coming from what. Then I will be hopefully going to uc davis soon and seeing a specialist, and go from there. It’s just having the strength to get to that day lol
Aa someone who suffers from severe chronic pain, I benefit greatly from medical Marijuana. Only in the great state of California, it’s illegal. I’ve lost doctors, gone without medications and been in extreme pain for my right and choice on how I want to treat my pain. I hope one day we are allowed to have medicinal marijuana and medication. For people like me, who have a lifelong of pain, it’s only right. I am not an addict. I’m just trying to survive.
The governor’s endorsement Friday of the legislative package hammered out by lawmakers was expected because his office crafted many of the details.
I made this page to chronicle the fights I have in my life. It seems like life in this busted body is a constant struggle. These aren’t issues I bring onto myself, but things attributed to my ailments. I am currently in the process of moving. Again. Because this unit came with no working hot or cold water and my aching bones have to be able to take baths. The shitty part? The last complex had the same issue. I’ve had one hot bath in 2 years. And my body hurts from head to toe. They also put me in a unit that has construction feet from our windows 7 days a week. My anxiety is thru the roof. I haven’t felt this level of depression EVER. They weren’t honest when they moved us in so now I relocate to another unit which means in my broken state, I get to pack. I’m not an idiot, but when your on ssdi and doing everything to keep your kids in the same school district, with the limited income come limited options. I sleep on the floor. It still doesn’t excuse scum lords from taking advantage and I can’t sit by and not say anything.
I was just let go from my job. The job I’m not supposed to work because I’m in constant pain with 10+ spine conditions but ssdi only covers my bills, so a part time job helps feed my teens and pay for their clothes as I am on my own. So there’s that. I was told it was due to not enough hours. I believe it was due to my memory issues. And just weeks before I was let go, I had my pain pump med changed from morphine to dialudid in an attempt to regain my cognition. It did give me some memory, but it put me thru weeks of sickness and loss of appetite. Still I sucked it up,told no one at my job and gave 100% . It wasn’t good enough. It never is. I’ve changed my entire career due to my disability,yet I keep on trying for my kids.
My 15 daughter decided to tell me yesterday she’s been unhappy for months,and wants to live with her dad. This is the first I’ve ever heard this. It’s actually the opposite,as she often complains about him and being there. The kicker? It happened after I took her phone for having bad grades. And after I told my kids I was considering moving to oregon because I felt my illness was infringing on their happiness. My daughter cried,and asked me not to go to Oregon. That she needed me. Apparently not.
Having a hidden disability sucks. You get misunderstood, and judged a lot. People tend to think your capabilities are that of a normal person. Why can’t I get the same support and treatment as someone in a wheelchair? I’m glad for the few spoonie friends I have. They keep me going. And fighting back in Sac.
That’s it for today. I’ll live to fight more tomorrow. They say stay positive. If “they” only knew how much energy that takes.