So I'm prescribed a lot of medication, but I try not to use any of it if I do it's because I don't really have a choice and I try to use the lowest dose possible. For example I have to take my bladder meds or else I get constant bladder spasms and The natural pressure of my bladder for whatever reason gets too high If unmanaged, which leads to me pissing myself and urine going where it shouldn't like the kidneys, and then suppositories for obvious reasons. The only other meds I take on a regular basis is Baclofen 40mg I'am supposed to be on the max dose as my spasms are off the chart and despite the fact that it's extremely painful, extremely annoying, uncomfortable, and I have to have my legs strapped down in my chair, and braised in bed just to stay in a reasonable position and frankly quite dangerous because I can be thrown out of my chair so I'm always tilted and in. But I know The harmful side effects of baclofen especially when taken long term , Most importantly the fact that it hinders recovery effects eligibility in clinical trials and actually may exasperate spinal atrophy which could potentially make future treatments ineffective there's a few other serious things that the drug can do including affecting ejaculatory function, and although I've never been able to since my injury I feel like having those functions constantly hindered by a synthetic drug could potentially lead to permanent problems, that is my own extrapolation but I'm certain that's the reality,and no doctor could say 100% certainly i'm incorrect given the circumstance. Using CBD marijuana as well i am able to stay at 40 mg I can't get any lower ( Believe me I tried ) the risk of the spasms literally breaking bones given the osteoporosis factor is too great even as it with my current dose and CBD combination the level of strength of violence of my spasms is quite substantial the two physiotherapy clinics I've been at haven't seen anything like it despite dealing with specificity in the SCIs and MS patients all the time sleep is also important hindered enough as it is. Anyways I just wanted to explain that to emphasize my conviction of staying away from any pharmaceuticals, in fact I think the Botox in the bladder may help me get off the bladder meds as Vesicare is quite a harmful drugs long term proven to cause mental and physical decline, and they get these studies done on people that don't have a SCI mind you,so they're likely even worse for us.
Now I could write you a list of all the health problems i have or had that would make all different types of pain much worse ranging from extremely serious things like Uncontrollable frequents AD fever introducing kidney infections, going septic and pancreastitis to more "common" but definitely troublesome things like bladder stones, chronic bladder intentions, uncontrollable sweating, tendongnosis etc. Since the start I was prescribed Hydromorphone but I rarely touch it. I was also given lyrica drug for nerve pain, which mine is quite bad and some days very bad ( end of the day nerve pain is a joke compared to really bad spasticity, and/or really serious infections tho) but I don't take it as it's not very effective and even more harmful than baclofen again long term for the same issues ( actually may atrophy a certain part of the brain it targets). Either way I make do i'm sure there's plenty of high cervical injuries in similar situations or worse with secondary complications off the charts very unlucky individuals. So I do tough it out, but I cannot deny that it affects my mood not in the sense of depression the vague term it is, but in the sense of agitation my fuse is easily light ( The worser ever pain is, the easier the fuse is lit ), muscles are always clenched so I'm always extremely tense and tight which is obviously mostly the spasms,always on alert because if I reach for something I could be thrown over etc. anyways recently I was in the hospital, long story short bad bloodwork and there may be some internal issues that could have an unknown cause could actually be caused by the spasms squeezing so hard on my abdomen, as some of you may know from the care section my autonomic dysreflexia has been undiagnosable and happening frequently, and as of the start of this year I've had so many infections that I can't treat them until they cause a fever and are life-threatening because of anabiotic resistance but I always come up with bad samples obviously when I go to the hospital for something else but they always check,and try to blame the bacteria which is what led me to my unfortunate situation with antibiotic resistance. So anyways the other day the pain was just so bad, the spasms were off the chart even for me, and I was arguing with people so I took two Hydromorphones i'm only supposed to take one but just needed to get things under control quick...
I could not believe it! It wasn't like it was fully relieving I still had spasms and pain just a massive reduction. When caregivers/doctors ask on a scale of 1 to 10 I usually just say 6 on a daily basis ( I feel most people Who are very sick just say 10 but I consider 10 The initial impact of being stabbed through the abdomen and once the adrenaline wears off, 9 would be passing a kidney stone, even pancreatitis that kind of thing the kind of pain you literally can't do anything with but brace yourself) but it's been so long living with it and certain aspects have just gotten progressively worse over time that I never realized how bad it was. Once it was taking away a little bit; I was blown away by difference to realize how much pain I'm in! No joke, as I said I'm sure many can attest to this. It did even reduce my spasms some my body felt quite a bit less tense but what was really noticeable, is i was so much more tolerable. The argument continued, but I did not get annoyed I just agreed, couldn't be bothered it was irritating but for the most part I just brushed it off rather than get mad, occasionally I would still say my piece but in no way shape or form did I reach a rage like I do sometimes. I could focus and read so much easier, I even fell asleep pretty quickly in my bed. Which never happens for me I don't sleep until 3-5 in the morning and I'm on and off throughout the early morning.
So I'm in quite a dilemma (not really), I actually finally took a pharmaceutical that has a literal drastic impact and I can't deny was quite positive. Doesn't change any of the problems , But nonetheless makes a huge difference. I know a lot of people do, but I can't take painkillers all the time! I understand with these powerful drugs Addiction is an issue, i'am definatly not the type to get addicted to anything ( Believe me I am all-too-familiar with addiction), so The real problem is the side effects are very serious they're worse than drinking alcohol in a lot of ways! I'm not gonna lie how much of a difference they made, and I realize holy fuck I'm literally dying every day I thought for a second "why am I not taking these every day" but that's not really realistic. I now realize that every day the pain I've been in more than justifies taking one, not to be arrogant but if people we're dealing with the same thing most would be begging for a baclofen pump ( that may not even work ) and definitely would be taking painkillers on a regular basis as well as a whole host of other meds they would not care about side effects ( most people don't, most people don't even know the full extent of these drugs, for example Baclofen hindering recovery because it's SCI related only it's not reported). I haven't touch them since, but sometimes I'm locked away dealing with all the different types of physical and neurological pain , And I look at how much work, money, resources I put in to my diet, physiotherapy my discipline how much sacrifice I make, plus avoiding all pharmaceuticals as much as realistically possible and look at the state I'm in. I know four other quadriplegics one complete, three incomplete ranging from five years to 25 years post One drinks and eats whatever comes his way no spasms, has been using a condom catheter for 25 years yes you heard that correctly and only recently had a bad infection and stones yeah that's a pretty handy bladder he has. The incompletes all use their shoulders similar to paraplegics: transfers, manual chair and all injured the same time as me or longer yet none have tendinosis in their shoulders, all of them the spasms are minor, bladders managed well, can't even have a conversation about AD because they barely get it, (One has very bad nerve pain as well though both trying to figure that one out together) etc I haven't seen any quadriplegics in general that have to strap down like I do. so I think where is the benefit, fuck it I should just be Poppin pain pills maybe they won't care still let me in the clinical trial as long as I'm not on the pump. But then I realize that that is exactly the self-pity , Week, and illogical kind of mentality that leads to addiction! Ughhh I literally just spasmed like I was trying to get into the crabwalk position well sitting in my chair, happens every now and then lol.