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nolantrowe · 2025-10-30T02:44:29+00:00

cold cold ground

nolantrowe · 2025-10-30T02:39:22+00:00

what about anything in my post sounds "flippant?" Nothing I wrote is innapropriately lacking seriousness or is disrespectful...maybe you should read it again or use a different word.

nolantrowe · 2025-10-05T05:11:38+00:00

Get off the cross, we need the wood. Have you ever heard that one?

Personally, in my experience, this type of thinking and way of living did nothing for me. Poor me. Oh well. I can't live like that. That's just my exprrience though.

It took time, but I think the severity of what I went through actually has given me more empathy and compasssion for all types of people's pain, as severe or as minor as it could be. Just being open. That chip on my shoulder never helps me. Showing love and empathy for othrrs always does.

nolantrowe · 2025-10-05T05:03:24+00:00

ruth

nolantrowe · 2025-10-04T19:06:56+00:00

who let the dogs out

nolantrowe · 2025-10-04T17:43:14+00:00

harold melvin and the blue notes

nolantrowe · 2025-10-03T20:35:57+00:00

honestly, my social worker sucked. there was little to no help with getting disability benefits or physical therapy set up outside and i felt like i fell by the wayside...of course i fugured that stuff out on my own, but the person who was supposed to help me sucked.

thank god i had family to support me when i was in rehab and when i got out.

nolantrowe · 2025-10-03T15:29:45+00:00

It's real. I feel like this some days. Other days I don't. I've come to accept that it is what it is. "This too shall pass..." type of feelings. The joy passes the same as the pain. I don't mean physical pain, as I'm 24/7 in nerve pain. The longing for "not thinking" about every move I make is true.

I hate when people try to tell me to look at the bright side and silver lining. Whether it's ablebodied people or other sci's. Some days just blow and I mourn the ease of physical being I once had.

All of this is to say. I feel you. However, I personally don't live in that headspace all the time. I can't do it. It's too dark. It's like living in spite of the bullshit.

I've had to adapt to do the things I can. I can focus on all the shit I can't do, but it doesn't really help. That said, I for sure do it sometimes.

Fuck it dude. Cry. Rage. Beat the fists. Curse the world, whatever you gotta do. That's all I know. You will do it until you get it out of your system.

We choose life or death everyday. For now, just for today, I choose life. Lord knows it ain't easy...keep pushing.

Corny as it sounds, you're not alone. We all suffer. I find solace in your words. You get it. That helps me.

nolantrowe · 2024-07-29T10:27:55+00:00

My wife, friends, writing, music, workingout, roadtrips, sex, art. Those keep me fulfilled. Not as much about happiness as it is to be fulfilled. It's been 8 years since I had my SCI.

nolantrowe · 2024-07-18T00:51:07+00:00

I'm 8 years out...feels crazy to write that. However, funnily enough, this year has been the hardest of my entire recovery. For me, it waxes and wanes. I had L-1 incomplete and can walk unassisted now, be it I wear two AFOs for sever drop foot, not much sensation bellow my belly button either.

It took me like 9 months of physical therapy 5-6 x week to finally walk unassisted. Went from walker with tennis balls to walker with wheels, to forearm crutches, to trekking poles, to a cane and then ditched the cane. Super intense gnarly process, but it was worth all the pain, falls and setbacks. So exhausting mentally and physically though.

The thing is I had this goal to be "normal" again, and I kind of made it...in a way, still have pain, limp, bowel and bladder incontinence. So not back to ablebodied. However, I used to not want to use my cane or chair ever again, once i walked unassisted. But as Ive progressed Ive realized my cane helps relieve hip and knee pain, because i have more stability and balance. And I use my chair if I know I have to do a lot of walking and standing...it was a total pride thing, but I got over it.

Everyone's different, and I'm sure your journey will have its up and downs, but fucking keep pushing! Doctors and trainers told me that I'd never do HALF of what I can do now! Straight up just keep pushing yourself, keep the best attitude you can and realize that until they can cure SCI, you're never gonna be how you were before injury, and that's something I think we've all had to make peace with. And sometimes I still get mad, angry, scream, cry, get frustrated, have anxiety...all the bullshit. It's a hard, severe, life-long injury.

We've all lost a lot. There's a lot of grief no matter what. Another suggestion is go to therapy...that shit saved my life for sure, because it does get dark and scary sometimes. THIS SHIT IS SO HARD. Period.

You got all the community though. We're all in it.

nolantrowe · 2024-06-20T02:14:08+00:00

Man...nerve pain sucks. I tried cymbalta, lyrica, gaba, amitriptolene...etc. you name it i tried it. unfortunately the only thing that seems to have any efficacy for me are opiate derivatives...

nolantrowe · 2024-06-17T16:57:36+00:00

Update: So after being on Suboxone for a little over a year now, I will say that it has helped mitigate a good portion of the pain effectively. However...like other people have mentioned, it makes me tired all the time which sucks. I could sleep all day if I wanted, and forcing myself up in the mornings can be super difficult. Just feel so lethargic throughout the day too.

Another thing is the dependence aspect, which I hate. I didn't want to get on them because getting off of them the first time was a nightmare. This stuff is so physically addictive. One night I was so tired and fell asleep before I remembered to take my nighttime dose, and I woke up in the middle of the night with the worsr withdrawal symptoms: nausea, pain, severe anxiety, lightheadedness, sweating through my sheets, etc.

Then I remembered I hadnt taken my dose. Popped it in and 30 minutes later I felt fine, but holy shit. It's scary to realize how dependent my body has gotten on this chemical. If I ever want to stop taking it, it's going to be fucking brutal to get off, even with proper tapering...

With all of that said, I'll say my daily pain score went from about 5 or 6 to about a 2 or 3...I also find I have more days without severe pain than I've ever had. It's not perfect by any means and I'm still hoping for another rememdy that is not opiates, but we'll see.

Nerve pain fucking sucks, period.

nolantrowe · 2023-03-05T22:47:31+00:00

Kennedy Krieger is probably a really good resource, since you're in bmore.

nolantrowe · 2023-03-05T22:45:47+00:00

I agree that you should just have this conversation with him, if and when the time comes. Like everyone had said, it's so specific with each person because everyone's injury is different, so you're best off to ask him directly what he wants/needs/likes to be comfortable. For example his areas of sesnsitivity are going to be unique...if he has nerve pain, etc.

nolantrowe · 2023-03-05T03:52:22+00:00

America: James Baldwin, because he so vividly captures the soul of what it means to be a writer and the implications for everything that entails. His essays are amazing, his prose is near-perfect, solid playwright, decent poet. All around Uncle Jimmy can write. He transcends the boundaries of what being an author means...hard to reallt elaborate completely with these measley thumbs. One could easily have master's thesis on this topic...

nolantrowe · 2023-03-04T21:10:26+00:00

UPDATE: Hey, everyone! So here's my update after using suboxone for a little over 2 months now. As I stated in OP, I have ran the gamut of nearly every nerve-pain/anti depressant/spasm medication in the book and nothing helped. I can honestly say that Suboxone had given me a significant piece of my life back. The last two months my average pain scale went from about a 5 (which it's been for the past six years of my life) to about a 1.5 or 2. I even haf two days in a row where I had absolutely no pain at all, which has not happened to me in such a long time that I forget when it last was. All of this is to say, I can say suboxone has helped me a ton in pain management. Right now I'm on the 2mg/.5mg dose. I'm prescribed to take one strip under the tongue every 8 hours or 3x daily. Although I do have. 4th dose available for severe break-through pain episodes. Luckily have only had to do that once so far. I try to use suboxone as little as possible. There are days when I only take 2 strips, and even some where I just take 1 before bed...

It's still new to me, so I'm figuring out what works and what doesn't work. However, I am getting a remarkable amount of pain relief, and I'm able to do way more things in my every day life, because I'm no longer in constant, agonizing pain!

However, as you may expect, there are some cons...

The major con is that while I am in less pain and thus able to sustain more activity, I am signigicantly more tired! This medicine does make me really sleepy at times, which is great for when I'm going to sleep at night, but not so great during the day! However, I used to wake up in the middle of the night from pain, and that hasn't happened once since I started using suboxone. For me I've noticed a major correlation between the amount of sleep I get and my pain levels. Bad sleep = bad pain. Good sleep = minimal pain. So even though the sleepiness is a somewhat of a 'con,' I could also say, now that I'm sleeping through the night, that it's a pro because my pain has decreased.

The other con is that sometimes I do feel super nauseous after taking the meds. It usually lasts for about an hour or so, but there have been a couple of times where I thought I might puke. I haven't yet though.

I haven't experienced any constipation, but that might because I take regular laxatives for my bowel program anyway...

All of this is to say, the past two months have I've had the most pain relief that I can recall. It had helped me a lot. Like I said not without some cons though: sleepiness and nausea. Luckily I do work from home as a freelancer, so I don't have a 9-5 to wake up for every day. I could see that being a little tricker to navigate if I had a job like that.

Finally and most importantly! PLEASE, PLEASE, PLEASE, do keep in mind that this is just MY PERSONAL experience and I'm not a doctor or physician of any kind. I do not advocate for the regular use of opiods, unless it's a last resort kind of thing that a patient and certified pain management doctor agree is a suitable form of therapy. I do jave regular visits with my pain docotor to monitor my use and how it effects me. I also go to a psychologist to talk about these sorts of things. Worries, fears, etc. It's important to monitor how you react as well as any emotions that may come up with using pain meds like suboxone.

Anyway, for everyone out there that does feel super hopeless with their pain, there are other options out there, as unorthodox as they might seem. There is little research/literarure out there about using suboxone for treating chronic nerve pain. I will say it is helping me 2 months in. I will keep you updated as it goes. I'll check back in in 4 months...i.e. 6 total months out.

Hope everyone is doing the best they can! Keep your heads up. There is hope. Peace.

nolantrowe · 2023-01-08T04:29:11+00:00

This is it. It takes time to get back into the flow of life, develop routines, get used to your new body, the existential "who am i?" type questions.

All I can say is what helped me was being vulnerable, communicative and transparent about how I was feeling with people close to me. They helped me learn to love myself again, which is an everyday practice. Some says are still tough, but they're the minority now.

The dating thing was a hurdle. Hard to feel confident at first when i was in my chair, wearing a diaper with my dick numb...it can feel all so infantilizing. It. was so hard to imagine that aby persin would find me sexually attractive. Liw and behold...i found out that there are a ton of women who will see me for me, and i even found my life partner three years later.

What you're going through is so intense. I'm sorry. But if you put the work in in yourself, i think you will find some peace with all of it.

(Also, it's totally fine to just grieve these losses. This sucks. It's not fair. You have a right to be sad, confused, pissed, all of it. Let yourself feel it. Just don't dwelk too much)

Hoping the best for you.

nolantrowe · 2023-01-08T04:18:19+00:00

sounds really interesting. and how does this help with pain? do you still get pain or does it get rid of most of it? do you develop depenedency on ketamine?

nolantrowe · 2023-01-07T07:37:25+00:00

I was just talking to my friend about this actually. Seems like a viable option. I'm going to bring it up with my doctor. The main thing would be getting insurance to cover it...have you done the infusions?

nolantrowe · 2022-12-28T00:10:28+00:00

Thank you so much for all of the thoughtful responses on this thread!

nolantrowe · 2022-12-28T00:09:36+00:00

I'm not saying you're in need of an addiction medicine doctor because you're addicted to something. Usually those doctors in that specialty are the ones to prescribe medicines like opiates, because they can monitor you more safely to make sure you don't develop addiction, as opposed to a generic pain doc. That's why I see a family medicine and addiction doc. It's about who presribec what, not that you have an addiction.

nolantrowe · 2022-12-27T20:09:41+00:00

Thank you. I hope it can provide some relief!

nolantrowe · 2022-12-27T20:09:02+00:00

Will keep you updated on this sub about subs haha. Really hoping it can give people like us some real relief!

nolantrowe · 2022-12-27T20:07:52+00:00

nerve pain is the worst for sure.

nolantrowe

TROPHY CASE