Tag: cauda equina syndrome

Sadness over madness

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, CES, Chronic pain, chronic physical pain, CRPS, depression, mental disorders, mental illness, mood disorders, physical pain

There was yet another shooting in the US. A hospital in Chicago lost an ER doc because of her fiance. We don’t know details because he is dead. An officer and a pharmacy tech were also killed. I am so sad over this. Docs are mad continues to happen while those in government do nothing. is becoming an every day thing. Innocent people are losing their lives because someone decides to take a life with a gun. I honestly think the more this is broadcasted the worst it will be. People must be thinking it is “ok” to do this, everyone is. Makes me so mad and sad.

I had to cancel my therapy appt last minute because I was stuck at the hospital trying to give a urine sample. My bladder was retaining so damn fucking bad. I felt I had to go. I knew I had to go. I had drank more than 1000 mLs of fluid. I was full or close to it but no, I wasn’t overflowing so nothing was coming out. I tried everything. It was so noisy in the lab. Soon as I went to a quieter bathroom, I finally was able to pee. I then had to walk back to the lab to drop off the sample. There was no way I would be on time. I would have like 15 minutes with him and that would be it. I hate having to cancel. Stupid bladder.

When I walked back to the station to go home, my heel was killing me. I don’t think it is plantar fasciitis. I am starting to think the steps I take are to harsh on my heel. It is so inflamed right now. I bought some gel inserts to try. I don’t know what else to do. My feet are freezing so I am not about to put ice on. I probably should. But with the whole CRPS thing, I fear I am causing damage than helping it.

My blood tests came back. My sodium is still low but higher than it was. My pcp sent me a letter but didn’t tell me if I need to keep doing the restrictions or not. Ugh. Idiot. So I emailed him back. Hope to get an answer tomorrow. I see him next week so will probably recheck my values again.

I was so damn exhausted. I ate a sandwich and then I passed out. I have no idea how long. I woke up with a bladder yelling at me. It was ready to explode. I was so disoriented. It was around 6 I woke up so I don’t think I slept too long. I was not rested. I just wanted to take my meds and go to sleep. But i was so cold. It was freezing in my room. It is a little warmer now. It is raining again. We are supposed to have a snow rain mix tomorrow. That is going to be fun as i got to go see the pain program social worker. I am going to be blunt like i usually am. I only had one session and canceled 2. I really don’t care anymore. I am not feeling well. I emailed the PT and OT about why I couldn’t make it. I am not doing the stretches at all anymore because it flares up my foot. I had a million and one pains last night. It was awful. I hadn’t hurt that bad in a while. Then when I was just about to doze off, my body jerk, causing my left rib cage to hurt. It was such a bad night. I have no idea how I got up this morning at 9 to be out of the house by 1030. I didn’t shower as I knew that would tire me out. I wish I went to therapy. The whole thing makes me want to quit. Like why bother seeking help when I have so much wrong with me.

My thoughts are with those employees of that hospital in Chicago. What a terrible thing to happen. It happened at my workplace. A secretary shot a cardiologist one morning. I was glad I was off that day. Total mayhem with police and news crews. The news were camped out for like a week. So stupid. Hope they all can talk about it so it doesn’t cause PTSD for them. That is my theory anyway. But sometimes it doesn’t work and does more harm than good.

Hope my pain eases and I sleep. Night all.

nice day for doing nothing

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

Nice day for doing nothing

Yesterday I had all sorts of pain. I really overdid it. I came home from therapy and was really tired. I tried to lay down to nap and my foot/ankle were shaking from fatigue. It was the weirdest sensation. It was like it was trying to hold itself up and couldn’t from the effort. I didn’t know if I was going to be able to go to PT today. I woke up this morning and was still in pain so when the med alarm went off and the top of my foot hurt, I called and cancelled my appointment. Then I went back to sleep until like 3pm. I was really tired and I guess my body needed the rest.

Yesterday’s therapy session was a joke. I told him all that went on with the shot and how difficult it was to draw the syringe. It didn’t phase him. The whole session he was playing with his fingernails. It was so pissing me off. Then I told him I have been having some intrusive memories come at me because of the whole SCOTUS nominee thing. I asked him what to do about it and he had no idea. He told me he was “trained extensively in trauma”. Really? Now I don’t believe him because a trauma person would know what the fuck to say or do. I am so pissed off. It was good that I was tired and didn’t put things together until now. I am going to cancel next week’s appointment. I just can’t deal with him. On the one hand I like that I have someone to talk to, but on the other, I would like someone to HELP ME WITH MY PROBLEMS!!! Isn’t that the fucking point of therapy??? The idea of trying to find someone new doesn’t exactly fill me with joy. I have no idea where to start, again. My chickenshit PCP wouldn’t know where to help me. And my psychiatrist has tried to find me a therapist and wasn’t successful. Over a thousand therapists in the Boston area and no one is taking new clients or wants to deal with suicidal clients. I am just tired of it all. So very tired.

As this is day 2, no changes. I am not in as much pain as I was in yesterday though my left thigh is still kind of sore but not as much. I had a hard time sleeping because of pain. After I had taken my extended release and immediate release med, I got a new fucking pain that I never felt before. I was like WTF. I didn’t know what to do or take so I decided Neurontin was the answer. Within an hour or two, I was knocked out I think I woke up around 4 am in pain so had to take another pain med, but other than that, I slept through. I was so foggy when I canceled PT. My foot was still hurting me so there was no way I was going to go. And for some reason both my heels were hurting me.

I took a shower but didn’t shave. I didn’t feel like it as I can’t afford a haircut this month. I thought I would be able to but I messed up my finances, again. All because of my damn T-pass. I finally got a monthly pass so I am not paying for fares left and right. I just checked my junk mail and LinkedIn seems to have been compromised or spoofed. I must have had like 20 emails saying this or that happened with my profile but when I hovered over the email, it wasn’t a LinkedIn email. I have been blocking but I just seem to be getting more emails. Then a sex site has my own email address spoofed. It would say like Sexy something and when I block it, it says I can’t block my email. WTF. I just hope that whoever has my email isn’t getting emails that are from that address. I got hacked the beginning of this year and had to change my password and alias to something else. I’ve had this email since I got internet services. I have no idea how to stop it.

In my junk mail was an email from the pain clinic. For some reason, my phone is rejecting their phone calls. I don’t know why this is happening. She left me an email to call her to set up appointments. I am kind of nervous now with how I will manage therapy, PT, and now the pain management stuff. I really feel stressed about it as my calendar is suddenly going to fill up. I hope I don’t have another day like yesterday as I will be too tired to do much the next day. I have the pain clinic tomorrow and I also see my psychiatrist. Luckily, both appointments are at the same place so I am not going all over the place. It is an early morning appointment so I need to try and go to bed early. Not that it will do anything as if I go to bed too early, I will wake up in the middle of the night. I just set my alarm so I wake up early.

So I posted this morning that I was feeling like crap, having a bad day, was in a lot of pain, etc. in the group that I run for cauda equina syndrome. I get this righteous “positive thinking” person tell ME that I sure have had a good hour or good day. Um, sorry. It has been so long and with pain 24/7, I don’t remember when that was. I say so and she responds with some assumption and I tell her that she doesn’t know me so don’t assume anything about me and I will do the same. She gets bent out of shape saying she is going to tell other groups about this “1 man band” self-pity. I tell her the door is open and sorry I am not a positive person. I left it at that. But I am so fucking mad. I mean I get that some people like to think positive, etc. but don’t be telling me I should be doing it because it helps you. You like to think that way, fine. But it isn’t my cup of tea! I haven’t started in 42 years and doubt I ever will. I am a pessimist and you don’t like it, leave. Plain and simple. I don’t have time to deal with your positive shit that I don’t believe in.

I am glad I am seeing my psychiatrist tomorrow. It has been a month since I saw her. I kind of like that I am not seeing her every two weeks but I miss her. I email her but she doesn’t always respond. I hate when that happens. I just cancel therapy for next week. I just can’t deal with him next week. I have been going every week. He is out Monday because of the holiday (Columbus/Indigenous people day). I don’t know why they are calling it Indigenous People day as the Europeans nearly killed all of them and forced them off their land. This is still going on today in South Dakota I think. The government is allowing an oil company to drill and they protested. The government went against them forced them in jail and other horrible stuff. The company spilled oil, ruining the drinking water in the area, something the Indigenous people were protecting. Assholes they are. I still don’t think they have cleaned it up. Makes me so mad.

Swear post warning offensive language here in

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, suicide

Swear post warning offensive language here in

So about two hours ago, I was smelling something. Had no idea what the hell it was. I thought maybe a cord was burning, something was catching fire, checked all my wires and electrical stuff. Nothing. I go downstairs to see if my mother sprayed something, and it is coming from the hallway, or so I thought. I went back upstairs. The smell got worse. I decided to open the damn window, screw the storms. I shut the vent or opened it (no idea) on my AC. Then go downstairs again because I had to pee. I check on my mother as her sugar was low. She was fine and then I see the culprit. One of my sisters bought a Renuzit freshener thing that was pineapple and coconut. It was stinking up the house. I shut it, told my mother, put it in the kitchen, and then went back upstairs fucking swearing.

I was talking with my BFF about stuff. I asked if she was okay. She said she was but I knew she was stressed. I won’t go into it but I was glad she told me. I was getting sleepy so I told her goodnight and I will check in with her tomorrow. She said she hopes to sleep too. I lay down, and my fucking legs become stone and hurt like fucking hell. I sit up, take some magnesium as that is the only thing I can think of to calm it down. I shift my position, causing me to move my ankle. Dumb fucking move. I saw fucking stars. Still hurting so fucking bad. I waited, hoping it would settle down. It didn’t. BT med time! I start having anxiety. I am ready to call my fucking psychiatrist, but what the hell is she gonna do? It is fucking midnight. I hate this fucking shit.

All day I have been having body dysmorphia issues. I really hate my breasts. I want top surgery so damn bad. But because of my damn pain issues, I can’t have testosterone treatment, which is delaying the fucking top surgery consults and what not. If I had the money, they would be long gone! I would find a decent surgeon and be done with it. I hate my body. I hate myself more. I feel like I am a fucking idiot who should be fucking dead. My therapist said that it was reasonable that I am thinking about suicide. Who wouldn’t be if they were in my crummy shoes?

I have tried to get my head around it. Someone reported me, again, to Twitter about my talk about suicide. I have no idea what tweet it was as they didn’t tell me. If I did, I don’t remember it. I know I posted last Friday after my pain doc appt. But I don’t think I have posted anything this week. Unless the word itself, suicide, is what freaks people out and makes them report people. I don’t know. They are assholes. If they would talk to me, that would be okay. I don’t know. Sometimes I want to talk and other times, I get the concerned but I don’t know what to do with you people. And it is all fake sometimes. Pisses me off, like bother someone else with you fake sympathy or whatever bullshit you are giving me right now. I know what to do if my safety is in danger. Been down that road one too many times and don’t think that just because I talk about suicide that I don’t know the crisis number or the crisis text number or someone I can call if I feel like I am going to act on my thoughts/feelings. It’s as simple as that. Do I want to end my life, yes I do. Do I want to do it right this second? No. But the time will come when I have all my ducks in a row to execute my plan. I am working with my therapist to kind of break the cycle of overwhelm/end my life thoughts. But until then, I can still plan. It is an escape. You don’t believe me, do research.

I want the meds to work NOW. I don’t want to fucking wait. I am tired of waiting. I used to be a patient person. Now I am realizing being patient, means just that. You are a patient of some kind to someone. The pain doc, psychiatrist, physical therapist, etc. you have to wait to see them. And it fucking sucks. I am tired of waiting. I want treatment now. And dammit, if I don’t get treatment, I am going to die. Maybe not by the damn disease/condition I have, but by other means, which I don’t know exactly what they are. This dying this isn’t easy. Probably is if you have some lethal illness but not a chronic painful one.

I hate that I can’t move my damn ankle the way that it is suppose to move. It gets fucking upset with me. Going down the stairs or up the stairs aggravate it. My right ankle is sprained so it hurts because the tendons are swollen and stretched a little bit more than they are supposed to be. I also walked a lot today. And went up and down the stairs a lot to find out what that fucking smell was that was irritating my respiratory system. Set off my allergies big time. I am sending them a text tomorrow and put it in all caps. That will tell them how fucking pissed off I am. Assholes. I don’t know which sister it was, most likely the middle one but I can’t be sure. They will definitely hear about it later today.

Sprained Ankle? Sprained ankle

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Sprained ankle?

So yesterday, I tripped over my own foot. It had gone inward and I lurched forward. I knew it was more than it because I felt like I moved something and it was painful. Later last night, my foot was hurting and I looked at my foot and it was pretty swollen. I put ice on it and the brace that I had been using for my left ankle. I couldn’t wear it long because it was annoying my Achilles problem. I called this morning to see if I could get it checked out and they had a late afternoon appt. I decided to get my haircut in the morning.

I checked on my mother and she didn’t need anything. No one was coming today, which I thought was odd. They would be coming tomorrow. I went on my way. The bus was early and I forgot the bus schedule was more frequent at that hour. When I got to the Square, the barbers weren’t open yet, so I went to Starbucks to get something to eat and have my espresso. I had 5 shots and a bagel. I didn’t write. After I finished the bagel, I went to the barbers and they were open. I was the first customer so didn’t have to wait. I was glad. I got caught up with the my buddy. He gave me back my dish. After he cut my hair, I went back to Starbucks to write for a bit. I had three hours before my appt. I didn’t want to sit and write for that long. I ordered a large iced coffee. I thought it would help keep me awake but it made me sleepy.

I decided to go home for a bit. I took the dish and my cup out of my bag. I forgot to put the cup in the sink. I changed my T-shirt as it had hair all over it. It was hot in the house. My ankle kind of went out as I was going up and down the stairs. I put the moleskin padding on my AFO as I knew the humidity was going to irritate me. It stayed on and I wasn’t irritated.

I went to the doc appt. I had a resident, who was behind. I waited. Then was called in. My feet were hot so I was grateful to take off my socks to cool them off. The doctor came in and I told him what was wrong. It was a little concerning as the foot drop was kind of new but I stressed it only happened when I was fatigued and usually on my way home. He said I sprained it and I would need an x-ray and a brace. I was hangry so I was very frustrated. CES again caused me trouble after all these years. I went to the different places. I was wearing my sneakers with Velcro straps rather than laces. It didn’t stretch that much and it was a tight fit. The brace pretty much immobilized my ankle, which was good. I was thinking of getting the same kind of one for my left so it wouldn’t cause me so much pain but I will save that for when I see whomever. The resident was going to try and move up my appt so I can get some care. I kept thinking today is Friday for some reason. I just want this week to be over.

I took the train home and waited for the bus. I listened to Pearl Jam as I was so frustrated. I seriously wanted to kick someone’s ass but there was no one. I came home and my aunt was still there. She said they just ate and why didn’t I let them know. ??? I just walked in the fricken door. I sat down in the chair and showed off my new brace. I was very hot as the humidity seemed to kick it up. The house was totally unbearable. I left my AC running. It was too hot not to. I couldn’t let my meds get hot, they would become yucky and possibly ineffective. I was hungry. I cooled off and my aunt yelled that she was going home as I was talking to my her son. She said my mother was “alone” and I said to myself, what am I, a ghost? He said that I had quacky doctors and went off. I told him good-bye. I was fed up with dealing with idiots who have no idea what I have been through and have their own idea of what is wrong with my ankles. It is all stemming from my nerve damage and that made my ankles weak, hence why I was tripping over them but because it happened 17 years ago, they don’t put the things together as I am seen as “abled bodied”.

My mother was lying on her bed when I came downstairs to make my dinner. I wanted a turkey sandwich so I made one. I had chips with it. Then I took a cool shower. I felt better after I ate. I realized then I was hangry. I told my mother what my aunt said and she laughed. I was so tired afterwards. I decided to take my meds early and go to sleep. The game had just started and the Snakes scored 4 runs. It didn’t look good. I told my other cousin buona notte, I wasn’t feeling well. In my rush to get some sleep, I forgot to take my night pain meds so I was woken up. Now I can’t go back to sleep. I didn’t plan on writing a blog today but here it is. I feel better now that I wrote about this. The pic is what I now look like with the AFO (ankle foot orthotic) and the air cast. I got to follow up with the doc to find out how long I am to wear it.

My malleolus was acting up when I got to my doc’s office. Now it is blearing. While I was in the shower, it moved some way that hurt really bad. It felt like it wanted to expand my arch or something. It felt like I had sprained it but I don’t see how that was possible as I didn’t do anything to it. It might have just been a cramp. I know I am dehydrated. I have been parched the whole time I was at the doc’s office. I didn’t have cold water, just the hot bottled water that was in my bag that was gross. I had leaked again while I was out and about. I smelled of pee so bad so I needed a shower. Tomorrow I am going to wear a diaper. I have no choice. I just hope the stupid thing doesn’t leave lint shit on my privates or in my ass. It is a cheap diaper but it works. I feel so embarrassed about it. But nerve damage is not something you can mess around with. I am not leaking more than usual or anything. I just am not feeling myself when I am full and the overflow is what is leaking. Then I get the urge to go. Past two days I have been ignoring the urge so I leak. That is life with Cauda Equina Syndrome!