So a few months after my initial injury, I was able to self-void (pee normally as needed). I had no real bladder issues until roughly 10 years post-injury, when I started leaking. It was mostly at night and during sex, but I also had 2 kids by this time. So I started different meds and eventually just went the route of Botox.

My first Botox (2013) was just 100cc, which was just enough to relax my bladder and help it expand. This didn't change my ability to self-void. I got the Botox roughly once every 9-12 months. That seemed to help.

In 2017, I got an SNS (nerve stim on my bladder) to assist the Botox, but eventually my Botox was doubled to 200cc. This paralyzed my bladder and caused me to have to start self-cath. What was happening was that my bladder had essentially shrunk- just kind of shriveled up. At my worst, I was compared to a 5-year-old's bladder- about 40% capacity of an adult.

The SNS really was of no use to me because of my SCI; I've always had to keep it on such a low level otherwise it'd make my left leg/foot twitch. But we kept it in and running to do what it could.

So Botox continued and increased from getting it every 9 months -> to every 6 months -> to every 4 months -> to every 3 months. It had become so often that they started having to actually put me to sleep for the injections vs just giving a Valium or something. My bladder would spasm so hard otherwise, it'd push the needle out.

This became a very daunting thing because it's hard for me to get IVs (my veins are small and roll). Needless to say, all the nurses and anesthesiologists at my urologist knew me and my history without looking at my chart lol. It became this whole ordeal every 3 months and a very expensive one at that.

Finally, in 2022 my doctor said the Botox is no longer an option- which he had warned me in the beginning it's not a fix- it's just a band-aid. It was just buying me time. My pressures were constantly risking my kidneys.

So we opted for bladder augmentation surgery, which I got done in Jan 2023. I really didn't want to do it because up until now, I had no major surgeries besides my initial spinal fusion (2002) and a hysterectomy (2017). But, I did it. It sucked- the recovery was 2 months long and it completely screwed my bowels up. 6 day hospital stay + foley and SPC for 2 weeks + SPC for full 2 months. Hated it all - I was exhausted lol.

I stopped the Botox post-surgery, and my UDS looked good. I was holding almost 300 before my pressures rose, so this was a big improvement (lowest was around 40-60 pre-surgery). I had my last UDS in 2024 and an ultrasound last year. Finally got my bowels back under control just within the last 3 months.

So, I called this week to schedule my next UDS and ultrasound because I figured they would be yearly at minimum at this point. But my urologist said he has no concerns if I'm having no issues and I don't need to do these tests unless I have issues (which I don't). And I get to go in next week to discuss removing the SNS completely!

I still self-cath and will have to for the rest of my life, but I'm ok with that. I'm just so glad to finally be at a point where I'm not in the doctor's office every 2-3 months and racking up so many medical bills (1 round of Botox is like $15,000-20,000 USD- I was paying $500-700 out of pocket after insurance each visit). Also, I'm sooo ready to get this SNS out of me. I forget it's there until my bladder fills up at night and I can feel it pushing on the device.

Anyways- this is just a small celebration for me (and my wallet LOL) and to remind you- things can get better even decades post-injury.

I have a Quickie Q300m Mini. It's about 2 years old and just got new batteries a few months ago. The lift assist (seat elevation) stopped working on Sunday.

Already attempted:

- Full charge

- Made sure seat isn't reclining too far

- Speed is not too high

- Unplugged batteries and back in

- Put in neutral and back in Drive

- Checked visible loose wires

Next step is to take the seat off and lift the cover to check the batteries and circuits which will be a pain in the ass. Anyone got any other ideas before I call and wait weeks/months for a repair? I'm hoping it's just something simple. It wasn't malfunctioning or "dying", it just suddenly didn't work anymore.

My husband and I had a good laugh this weekend because I pulled a muscle in my upper back so I couldn't transfer Fri night and most of Sat without extreme pain. So he was helping me. Then he hit his ankle Sat so I was like... well damn, if your legs go out and my arms go out, we're just fucked. 😂 Needless to say we just both napped all day Saturday.

You just gotta laugh at the 💩 times.

I'm independent, fairly active, no major health issues. The last few weeks , maybe month I've had this burning, stinging in my right calf, specifically on the outside part. It feels like razor burn but under my skin.

No discoloration, no heat, no extra swelling, so no signs of a clot. I get a vascular check annually and have no history of cloths, my blood flow is fine. I just have the typical SCI related swelling in the feet/ankles and circulation issues but I can easily rectify that on my own.

The feeling is there nonstop, even at night in bed. The only relief I've found is by using my portable vibration plate and strapping it to my leg or from massage. I still feel it and massage kinda feels like rubbing a bruise, but it feels good. It's weird.

My right side is my weaker side but I can move it and feel. But it does naturally swell more in my ankle and foot than my left side. I've also had this random "pop" in that ankle, even without moving so I assume that's just the fluid popping my tendon or something. It's nothing drastic and only lasts for a few seconds and happens maybe once every 2 weeks or so.

So I'm wondering if the calf "pain" is radiating from the ankle. Maybe nerve pain? Just wondering if anyone else has had something similar?

(Yes I will be seeing a doctor. I have my annual checkups at PCP, uro and vascular all coming up)

Good show. It has a good puzzling storyline to keep you interested in finding out who the killer is. Some epic kill shots also.

I had no idea this was in the "Slasher" universe 🤷🏼‍♀️

Worth the watch though. On Shudder

If you like found footage, this is a must. There's a series of 5 movies:

1. Hell House LLC (2015)
2. Hell House LLC II : The Abaddon Hotel (2018)
3. Hell House LLC III : Lake of Fire (2020)
4. Hell House LLC Origins: The Carmichael Manor (2023)
5. Hell House LLC: Lineage (2025)

They are on AMC+, Shudder, and can buy on Prime.

Have you noticed any increase in other senses since you lost some touch/feeling/sensation? Kind of how some blind people have increased hearing and touch...

For me, even though I haven't lost complete feeling, I've noticed my hearing and smell are heightened. I can smell things long before anyone else in my house can and my hearing is annoyingly super to the point that loud noises can give me a slight panic attack.

But I think most of all for me, the strangest thing is that my feet have become kind of like spatial sensors. I use my feet A LOT to push things around and pick things up but also to feel my surroundings, if that makes sense.

For example, I hardly ever wear shoes. I only wear them in public, and even then, I don't put them on until I get out of the car. But when I drive, I need my shoes off to properly gauge how much I'm pushing the pedal. I can drive with shoes, but it just doesn't feel as confident.

I also keep my left foot positioned so my toes are off the edge of my footplate. This helps me navigate my chair better. Basically, I can get up in the middle of the night, in the dark, with my eyes closed, and get to the bathroom without running into anything just from using those toes. It's weird and almost feels like a bat that uses echolocation to fly lol

Just wondering if anyone else feels like their senses have changed? I know some have said sexual touch is more heightened in other areas of the body.

So, I've had a few people ask me how I stopped all of my prescription meds. Figured I'd just make a post to share my journey.

NOTE: This is NOT a post to encourage stopping your meds or some "go homeopathic" debate. This is just what I did and what I found works for me (and some others I've seen say similarly for them).

-----------------------

I was injured at 15 years old (23 years ago now). I'm C4-6 incomplete and was paralyzed from the neck down initially. At my highest, I was on 8 different pills, 3x a day. Everything from pain meds, anti-spasm meds, uppers, downers, nerve meds, you name it, my doctors had me on a nice cocktail.

I spent 3 months in inpatient rehab, then went home on all of those meds. It took less than a year for me to become addicted, abusing, and selling my pills. No teenager should be on that many meds, especially when not in a controlled hospital setting. If you've ever watched "Pain Killers" on Netflix or "Dope Sick" on Hulu, this was my life.

Roughly a year post-injury I did some hardcore rehab and gained back enough movement to be independent from my chair so I was able to come off some of the meds, but I was still on some very high doses of opioids. The antidepressants basically didn't work anymore due to the abuse and I ended up trying to suicide by taking an entire bottle of Klonopin. I was a hot mess and the independence I gained honestly made it worse because I was able to drive so I was just always gone, being a high, rogue teenager.

Fast forward to age 17 (almost 18) and I now have my first child. This was my wake-up call and the start of getting clean. I slowly started tapering off some of the meds. I started with anti-spasm and higher-dose pain meds. I basically went down to just Loratabs for pain management for a few years. Adding in more exercise and stretching helped "fill in the gaps" of what the pain meds couldn't do. I also had to accept the fact that I'll never be pain-free. I just have to build up tolerance. I was still on a rotation of trying different antidepressants and nerve meds.

I had my 2nd child at age 20 (5 years post-injury) and this is when chronic migraines kicked in. I had them before but it became a nuisance at this point. Doctors couldn't pinpoint the cause, but they happened during transfers so it was attributed to "tension-related". So I ended up being put on different migraine meds, older antidepressants that treat migraines, etc.

I had 2 kids to take care of + working from home, but all these meds just made me a zombie. Most of them were too sedating for me to properly function independently. My doctors never really tried to help me wean off any meds. Instead, they'd just give me lower doses to combat the sedation, but the low dose wasn't enough to treat the issues I was taking the meds for. So to me, it just became pointless. I was stuck in this cycle of "new med at normal dose -> lower the dose -> rinse and repeat". I was over it.

After about 7 years of failed antidepressant cycles, I just stopped them. It was a rough withdrawal period for about 3-4 weeks, but I just took the plunge. I added in therapy to help me learn how to cope with all my "sadness" in the process so I didn't manic out. I was still on an old antidepressant for the migraines (Topamax), but I had stopped the ones that were specifically for mental health.

From 2014-2017, I had a rough battle with gynecological issues (not SCI-related) so I was on different pain meds during this time. In 2017, I had a hysterectomy, and once that recovery was over, I started working on getting rid of the nerve meds and pain meds. The nerve meds were honestly the easiest thing to drop. I switched to anti-inflammatory meds + more at-home exercise and leg circulation pumps. This seemed to help the nerve pain for the most part. It didn't get rid of it completely, but it made it manageable. So, gabapentin was out of the rotation now. I eventually stopped the anti-inflammatory also.

At this point, I was only on the migraine meds and loratabs. Around 2020, I stopped regular use of the loratabs and had gotten into a regular routine of activity and stretches that helped the pain. Taking OTC Aleve or similar helped if it got too bad. I also had a good grip on my mental health at this point, and my stress levels were reduced, which also helped a lot. I did 12 weeks of ERP Therapy (exposure response therapy), which really helped me deal with PTSD and OCD triggers. Stress causes muscle tension which leads to pain. I switched from Topamax (which I had maxxed out by now) for my migraines to Emgality, which was just a monthly shot.

Jan 2023, I had bladder augmentation surgery. This was the largest surgery I'd had since my initial injury. I was in the hospital for 6 days, and it was a 3-month recovery afterwards. Prior to that surgery, I had told my doctor no opioids because I had gotten to a point where I was completely clean of them. Unfortunately, I woke up from surgery on a morphine drip. I immediately felt defeated. Within 2 days, I found myself right back in the addiction, maxing out the drip in addition to other pain meds they had me on. When I was discharged, it was a rough week or so at home while I tried to wean myself off. You can't just cold-turkey those meds. But I was able to stop the pain meds again and just rely on the anti-spasm meds they gave me for my bladder. It hurt like hell, but it is what it is. In April, I had the temp SPC removed and this is when I was able to stop the spasm meds completely.

After this recovery, my goal was the migraines. I started focusing on more water intake, screen time breaks ( I work on a computer), and safer transfers. In Jan 2024, I asked my neurologist to take me off the Emgality, which is a preventative, and put me back on a reactive med (Imatrix), which you only take when a migraine hits. I told him I had made some lifestyle changes and I wouldn't know if they work if I'm still on the preventative meds. He literally looked at me like I was some crazy hippy, laughed and handed me a refill script of the Emgality. I threw it in the trash on my way out the door in front of him and have not been back to him since. Feb 2024 was my last shot and I can honestly say, I have not had a severe migraine since.

I took this same approach with my urologist who wanted to continue Botox in my bladder after the bladder augmentation. I refused it because the whole point of the BA was because the Botox was no longer working. My UDS have improved without the Botox. I went from getting it every 3 months over the course of a few years to none at all for the last 3 years.

So, as of Feb 2024, I am prescription-free. I do take supplements, which I'll list below.

• L-Theanine: 200mg capsule every morning to help with energy and calming/relaxing. Non-sedative
• Psyllium Husk: 1,500mg (3x 500mg capsuls) every morning for bowel regulation (I don't do a bowel program)
• Magnesium Glycinate: 200mg at night to help relax muscles and nerves, and works like a sleep aide.
• Aleve: As needed if my shoulder pain gets too rough after working all day.
• Benedryl: 1-2 tabs if headache/migraine hits. (Yes, Benedryl works for headaches)

Other than this, my daily routine has a lot of regular exercise/stretching built in. Outlined here

Anyone use one for circulation/swelling?

I have circulation leg pumps (the big bulky ones and cordless ones) and a small vibration disk that I can strap to tummy/arms/legs. But I've been considering getting a vibration plate to use while working since I'm sitting at a computer 40 hr/week. But I don't want a huge bulky one. Something sleek that can potentially sit on my footplate.

If you use one while sitting, can you provide recommendations? How does it work for your swelling?