Tag: cauda equina syndrome

Pain and its Awareness

by Midnight Demon, posted in chronic physical pain, mood disorders, suicide

Pain and its Awareness

Pain in my ankle just hit a new level. I have been resting the last couple of hours in my bed. Just listening to music, reading Twitter and Facebook. Not really doing anything. And then I move my ankle just a little bit to get a little more comfy on the bed, and WHAM! I get hit with pain. And for some reason, I am wondering why it seems I can always feel my left ankle but my right, never a peep. I don’t even know it’s there most days. I know it’s attached and all, but I don’t feel it like I do my left. My left is constantly hurting and I am more aware of it than any other body part. I just find it a little lopsided. I try not to favor my limbs, but with this level of pain, it’s hard not to.

I am glad only one body part is affected. I can try to be more aware of my good ankle and notice that it is not bothering me. I wish my left would get the fucking hint and be like the right. But the left has been injured more than the right has. Suffering from a sprained ankle when you have foot drop is not a good thing. I have never recovered from it. See, before I went to the big hospital in Boston, I went to a smaller one outside of Boston because it was closer. I thought it was a good hospital. I couldn’t have been more wrong. So after basically doping me up and sending me on my way with no treatment or precautions if things got worse, I was wheeled to my friend’s car. It had started snowing and I couldn’t stand on my left side without pain. I fell and my ankle rolled. I should have known something was seriously wrong because I went one way and my ankle went the other. I didn’t feel a damn thing. I should have been smarting more than my back and leg pain. But nope. Not a thing. It wasn’t until two weeks later when I got feeling back in my leg after surgery that the sprain pain began. I was relearning to walk and my ankle hurt like a bastard. In the fall, I also sustained a nice bruise on the side that I fell on. I didn’t feel that either because I was numb. I thought it was the result of surgery as I had bruises everywhere.

Because I had foot drop and they were rushing me to get me on my feet, the sprain never healed correctly. This is all in hindsight. I didn’t know that the sprain would haunt me 12 years later and give me a pain syndrome. Course it didn’t help that I re-sprained it a year before the syndrome decided to take hold of my ankle. I remember thinking, during the day, that I was in a lot of pain. I almost always have my pain at night. It almost never happens during the day, but syndromes don’t care what time of day it is. It’s going to hurt you whether you are awake or in a deep sleep.

Once I noticed that this pain was different or possibly the start of something worse going on with my back, I got checked out. I must have seen 15 different doctors of different specialties and no one could figure out what was wrong with my ankle. They still don’t. Three have told me that I have CRPS, Complex Regional Pain Syndrome. They were two physiatrists and my neurologist. But did my PCP believe them? No. He just kept sending me off to new doctors to see what was going on, to get me better. I don’t think I am ever going to be better. I don’t think I can recover from this much damage. And that is ok as long as I get my pain meds or the PCP is going to sign my death certificate. I don’t abuse my meds nor will I try to end my life on them. I am too fearful of the Tylenol content to wreck my liver before killing me to try and go that way. Besides, who needs pills when I have a rope?

Twitter and CES Anniversary

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders

I checked Twitter soon as I got up this morning, like I always do. A Twitter friend had written something like “it was nice knowing you Twitter” with the hashtag #RIPTwitter. I just thought he was saying goodbye to it. He doesn’t post often. Then I noticed the hashtag was trending so I clicked on it to learn more. Apparently, Twitter is thinking about changing their timeline to an algorithm rather than chronological, like Facebook. WTF. I like Twitter because of it’s chronologically set timeline. I dislike Facebook because of its stupid algorithm. You never know what your friends post currently unless you change the settings to “most recent”. It’s so annoying. I sincerely hope they don’t change because then I won’t be on any social media sites. I will be alone and isolated. It will be very sad.

I slept pretty good despite waking up at 0345 in pain. I had breakfast at 0430 and then went to sleep. I didn’t get up till around noon. I had lunch then and now I am thinking about making biscuits and gravy. I haven’t had it in a while. I might have rice with it.

I’m feeling depressed. I had leg pain when I got up and it was just a reminder that even though my CES injury was 15 years ago, I still have pain. It really triggers my PTSD whenever I have pain down my leg because I never have gotten over the injury. It was very traumatic. Tomorrow is my anniversary and I just can’t believe that after 15 years, I am still trying to recover from it, emotionally. My body failed me. I took things for granted like walking, going to the bathroom, even wiping my own ass. The whole time I was in the hospital, I had to have someone wipe my butt every time I had a bowel movement. It was humiliating. I am sure that the way I wipe it now would be frowned upon by some professional, but it is what I learned to do because I can’t reach the way I used to.

I have relearned to walk three times in my life. There was a time when I thought I would have to walk with a walker the rest of my life. There was just this uncertainty that I would not recover. No one told me I would recover. They just thought I was lazy and didn’t want to get “better”. I did what the physical therapists told me to do, even though it hurt like hell. I think the greatest thing that got my strength back was doing stairs in my house that I was living in at the time.

I was in a relationship at the time of my injury. But afterwards, it made sex difficult. I would hurt so bad that I just couldn’t orgasm. It was just too painful being touched and getting excited. The relationship suffered because of this. I was also raped during this time. The partner I was with thought that I could get pleasure but she just didn’t know I was in pain, despite me telling her to stop multiple times. I lost interest in sex. I still do. It doesn’t interest me like it once did. Even when I shower, I have to be careful not to excite myself. You don’t realize how sensitive the genitals are until you get hit with this type of nerve injury.

But these things you take for granted until they are lost on you. You don’t appreciate walking and all the muscles it takes just to take that first step. How the hips are connected with walking in addition to the other muscles in the leg. It took months to walk just to walk with a cane. Then I was told I was “babying” myself because I was still walking with a cane. I think that was the worst someone could tell me. I think that maybe, looking in hindsight, that if I continued to walk with a cane, maybe my ankle wouldn’t have been so fucked up as it is now. Now I am truly disabled. I can’t walk too far without pain. I can’t stand too long without pain. And I walk with a cane now so that I can try and walk farther without pain. Sometimes it works. Sometimes it doesn’t. All depends on the day. I once measured that I could walk 0.4 miles without pain. Now, with my current back injury, I doubt I can make half that distance. My hip would explode. Maybe after physical therapy this go round, I will be able to.

I just don’t know what to do anymore to not be in pain. I can’t sit in a chair for more than a couple hours without my ankle swelling up. Yesterday was a good indication of that. I had sat at Starbucks for a couple of hours before having the appointment with my father for another couple of hours. I still wish that someone had noticed that I wasn’t walking correctly all the times that I was having physical therapy. Maybe I wouldn’t be disabled today if that had happened. But then. I really didn’t think I would get CES again. It’s hard to know if the second diagnosis caused the ankle to behave the way it does now or if the original injury did. Chicken and egg question. I will never know.

So I went out

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders

So I went out

I didn’t feel like going out today. I really didn’t. I wasn’t feeling good from the migraine I had this morning and my stomach felt off for most of the day. I barely ate while I was out with my friends for dinner. I took it home what I couldn’t finish. It will make a nice lunch tomorrow. But I had a good time and now I feel better, physically even though my ankle is being a brat. Tomorrow I have a longer day. I just hope I am up to the task. I see my psychiatrist in the morning. Therapist around noon time and then my father. I have switched my days going over to his apartment because of his little trip to NY with his GF. I can’t even spell it out because it makes me sick when he is with her. She is a nice lady and all, don’t get me wrong. But she will find out how rascally my father is one day and she is going to get hurt. I feel bad about this because it has disaster written all over it and she can’t see it. But they are having fun for now.

I was 45 minutes early for the next bus so decided to take a cab home. I am glad I did because I had to pee and waiting 45 minutes with my nerve condition would have been torture. I went and there was bleeding. I missed one fucking pill because out of it and I am bleeding already?? WTF. So I am not taking my meds tonight. Only Ativan because my back spasms are horrid. I even drank Gatorade today. I don’t know why I was cramping up. I drank a lot of water at the restaurant (hence why I had to pee). I didn’t drink any alcohol and I wasn’t up for it even though they were giving samples of it. I got carded. 40 years old and I got fucking carded. Unfucking real. The lady was doing math in her head and she couldn’t believe my age. I look young, what can I say?

I had therapy today. My therapist was in one of her moods where she talked and I listened. I didn’t care because I didn’t feel good. She kept asking me questions and I would answer them. Then she asked me what I was reading and I said you are just going to laugh. She laughed. I didn’t find it funny. She said it was to get it out of her system. Yea right. And the Pope is Irish. I told her about what I was reading even though she was laughing at my selection. She also asked if I was writing. I told her I wasn’t and she said not even blogs? I said yes to the blogs which I got a “oh” response. Like my blogs are nothing.

She asked if I was suicidal and I said I just want to die. End of story. She didn’t go into her tirade of questions afterwards for which I was grateful because it annoys me. I told her I didn’t shower today and had no plans to. I told her last time I did was Sunday. She was okay with this. Though I should shower before going to bed. I will take it in the morning. I did change my stupid underwear to female. I really want to fucking die now. I should have worn a diaper tonight. That would have been the ideal scenario. But I was too lazy to so I had messy drawers after my night out. Fuck.

It was warm today. I was bundled up like it was freezing out and it was in the 50s. Damn weather. I sweated my ass off. Another reason I should shower but I don’t fucking care. One night being dirty isn’t going to kill me. Several nights, that is a problem. But one night, I don’t think so. I still can’t believe I am bleeding though. WTF. After missing just one hormone pill? And it’s only Tuesday? I took two last night to catch up. A lot of good that did me. I am just so damn pissed.

I got email confirmation my doctor’s office can read an email! I got a 90 supply of one of my blood pressure pills. I am thrilled because now I don’t have to pay $20 for a 30 day supply, which is ridiculous! They messed up my other blood pressure pill but it’s still not as expensive as the 90 day one, and I got a 2 month supply so that was something. I just hope the stupid Walgreens alert refill doesn’t go off. It drives me crazy, especially when it goes off telling me to refill the meds I just picked up! Something is wrong with the app. I might have to uninstall/re-install it and see if that helps.

Surgeon and being cold

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders

Surgeon got back to me

I got a call from my surgeon this evening. He told me I had degenerative changes but nothing major going on. He offered me injections (I declined) or physical therapy. I opted for PT. His secretary will contact me with the information. I am glad he called me today rather than tomorrow when everything is going to be so busy in the morning.

I emailed my psychiatrist and texted my therapist with the news. I am glad I don’t need surgery, just physical therapy. I think it will be good because maybe I can get this kink out of my right hip and the soreness out of my left thigh. I know I don’t walk right because of my ankle issue and the PT is going to have their hands full with me because of my back issues. I haven’t thought where I want to go. Ideally, I would like to go to SRH as they were good to me there for my ankle, even though they didn’t help me. But they were trying to undo 14 years of damage in just a 30 min session. I didn’t have the patience or the tolerance to deal with the pain that ensued.

One less worry, for now. I hope I am not getting a damn cold again. My nose is clogged and I feel icky. I was able to shower, though my foot is killing me again. It’s going to be interesting to do physical therapy on my back with an injured ankle/foot.

It snowed today, our third snow fall of the year. We got a few inches, nothing major. I am hoping tomorrow it doesn’t freeze over as it’s supposed to be brutally cold. And of course, I will have to wait at the bus stop freezing my ass off. That is going to do *wonders* for my back. Just thinking about me makes me cold.