Category Archives: cauda equina syndrome

Swear post warning offensive language here in

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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

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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!

Rambling 29 July 2018

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Rambling 29 July 2018

I didn’t do much yesterday but sleep because I didn’t go to sleep till 5 am. I had a bad night of pain. I sent an email to my psych around 4 and then took an Ativan and that finally got me to sleep. I put my phone on do not disturb but set my alarm so I could take my morning meds. With the do not disturb, my app alarm doesn’t work.

Sox won. I listened to the game, though around the 7th inning, I was getting sleepy so tried to sleep. My foot decided to explode. It was hurting me before I laid down but then it really started to hurt. I took some Neurontin. It didn’t work. I put some lidocaine on, and that seemed to calm it down a bit.

My cousin was calling me a few times during the day. He gets anxious if you ignore him. I really think, after talking to him tonight, that he is paranoid. He seems to think his mother and sister want him to move out of his apartment so his other brother can live there. I don’t know. That seems kind of crazy to me. I don’t know where he will go. He says he can’t live on his own, but yet he is. He can do a lot of things I can. I told him I might have to go into assisted living if something happens to my mother. I can’t be on my own because I never know when my ankle is going to go out on me. I can’t keep up with house chores. I found that out Thursday when I tried to do six loads of laundry. It took a lot out of me.

I have some dishes in the sink but I was too tired to do them after I ate. I used my last cold brew iced tea bag today. I have it brewing in the fridge right now. It is probably done now but a few more hours won’t hurt. I like it to be strong. I think you can use regular tea bags but I think it takes longer to brew or maybe you use hot water and then cool it so you have iced tea. I have a hyperchill think I can use. It works great for coffee. I just make coffee like I do for hot and then put it in this cup with ice around the chamber and it cools the coffee without diluting it. It is really neat. Only thing that sucks is that it is small. You can only get about 12 oz of coffee. I like at least 16 oz.

I am listening to my country music. Cam posted a little vid that she performed in Mexico. She sang Diane in Spanish and OMG it was better than it was in English! It was just one part of the song and then she sang the rest in English. I was bummed. I had to listen to her song again and just let the playlist play.

Weather is supposed to be less humid today. We’ll see. Today is going to be the only day the weather is less humid. Monday is going to be yucko again. I’ll have to carry my sweat rag with me. I can’t help it. I just sweat a lot in hot weather because of my nerve condition.

I am going to try and sleep. I will write more if I can’t. Thanks for reading guys. It means a lot.

Things that annoyed me and other stuff

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Things that annoyed me and other stuff

I woke up around 0330 in pain. Took me a while to get back to sleep. I think it was around 5 when I did. I woke up next because of my med alarm. I took them and then my bladder had to go. I went downstairs and it was already muggy. I used the bathroom and brushed my teeth. I didn’t feel like showering. I know I need one but I am just being lazy at this point. I went back up to my room and fell back to sleep. I set my alarm for noon so I wouldn’t sleep late. That was for waste as my dumbass cousin kept calling me. He must have called like four times. I let it go to voicemail. I stayed in bed until it was 1230 and then got dressed.

I went downstairs and put my shoes on when I realized I forgot my insulated cup. Oh well. I didn’t feel like going back upstairs for it. I grabbed by bag and then went out. My cousin was pulling up and my mother was getting out of the car. I started yelling at him for calling so many times. He said my mother had bags and I needed to help my mother out. What was wrong with him?? He has no problems with his legs. He is just a lazy fuck that refuses to go up one friggen flight of stairs. I walked away after he said that I should help my mother and he asked where I was going. Fuck you. I put Taylor Swift on my headphones and went to the bus stop. Bus came because I got the bus driver that likes gas. She drives fast and you better sit or brace yourself once you get on the bus or you’ll go flying.

I ordered my Starbucks. I wanted a cheese Danish but the store was out of them. I had a coffee cake instead. After I ate, I wrote in my journal for a bit, but was not too focused. My thoughts were all over the place, making it hard to write them down. I used the restroom and then left for my therapy appt.

I got there and he was running late. I had so much to talk about. I told him about my cousin and what he said. Then started talking about how my father has been on my mind a lot lately. It’s been more than two years since his death yet I can practically remember every detail of the day he died and it plays at least unexpected times. I told him how I felt about not being able to do enough for him, but knew also, there was not much I could do to save a dying man. Even if I altered the DNR to get him fluids or other care, it wouldn’t benefit him. It might actually cause him more pain. We talked about how I felt about him and the abuse he did to me on so many levels. I nearly broke down at least three times but didn’t. I somehow kept the tears back. I don’t know how to process this. It sucks big time. He let me talk. He didn’t say too much. Told him how my uncle died, my father’s brother. I didn’t find out the truth about how he died until a few years ago, before my father died. I forgot who told me. It made sense to me though I didn’t say anything more about it to anyone. I was five when he died and really don’t remember him that well.

My therapist had to change our time for next week. So I have a double header next week. PT in the morning, therapy in the afternoon. Fun! I should be a fucking wreck physically. My mother called after therapy. I had just missed her call by a few minutes as my phone ringer was off. I called her back and she asked when I was going home. I told her I was on my way but it could be an hour or so depending on the bus. She said when I got home to tell my niece to come upstairs. I said okay.

The bus was late and I think something was wrong with the back doors as the driver had to get out of the bus to fix it or do something to it. I was hoping things went okay as we were a few stops away from where I was to get off. It would be a LONG walk if the bus was broken down. But whatever he did fixed the problem and I got off at my stop. I went to Walgreens to get some protein bars but the price went up. It was 2 for $3. Now it was 2 for $4. I didn’t have the other dollar and I wasn’t going to pay $2.49 for one. My friend told me I can sometimes get coupons for these things so I will check out the website she recommended.

I had dinner and then went up to my room to change. I was so tired. I was hungry again but thirsty too so I drank some powerade. I wanted to make some fried eggs and toast. That has been my kick the past few weeks. I took a shower instead. BAD MOVE. My back protested violently. I am still hurting. I had to shave my underarms so the extra standing just annoyed my back. My trimmer ran out of juice and had to be charged so it was the old fashioned way of razor and shaving cream. It took longer but was worth it. I then washed off in the shower until my back had enough. I think it was the fastest shower I ever took. Getting into my PJs was hard. My feet did not want to go through the pant legs. I was getting so annoyed. My back was ready to kill me. My legs are also hurting. My left thigh is beyond sore. I have one appointment tomorrow in the afternoon to see my PCP and then 4 days off of doing NOTHING. Least I hope so. My legs are going to need to rest.

Colon blow and other Cauda Equina Syndrome “fun” things

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Colon blow and other Cauda Equina Syndrome “fun” things

I didn’t write my blog yesterday. I only got a few hours sleep due to pain and worrying that I would sleep through my alarm. I went to my psych appointment and she put me on a new antidepressant that is out. I came home and had a severe flare. My pain was through the roof. I was supposed to go to the ball game but it wasn’t happening. After my mother made dinner, I took about an hour and half nap when my phone’s med alarm went off. I took my night meds and got so sick. I haven’t moved my bowels all week so been feeling ill and I think the new med just made me nauseous. I thought I was going to hurl. I took my Zofran and laid still. I also took some Mylanta because I had gas really bad. When I didn’t feel like puking anymore, I took some fiber to help my bowels move along but a few hours later, nothing happened.

I decided to try some Miralax to help move things. I was hurting so bad and I swear my stool was moving into my small intestine rather than move along to my colon. I was still passing gas but nothing else. I went to Walgreens and bought some and a Gatorade to take it with. Having suffered from Cauda Equina Syndrome (CES), getting constipated is a HUGE thing. There is a varied range of people’s degree of injury to their bowel nerves. Some don’t feel themselves go so become incontinent and being constipate helps to prevent accidents. Some have a designated shit day where they take laxatives and spend the day on the can to relieve themselves. Taking medication for pain can be constipating. I have no feeling for soft or loose stool so can pass them with gas if I am not mindful of it. Never trust a fart is a common saying among those with CES.

I usually have hard stool and can go with senna. Lately, because of my flares and needing more pain meds, it hasn’t been working. Usually fiber helps me move along and I try not to have plans the following day so I can go to the bathroom in the privacy of my own bathroom. I hate using a public restroom when out because I don’t have the mobility to reach my behind like I used to due to my back surgeries. When the fiber and senna do not work, I take Miralax hence why I went to Walgreens today. I have been having a ton of flatulence which I cannot trust. I was able to have a few movements after taking the Miralax but now I am having what is known as colon blow where all you do is go to the bathroom. Since I can’t trust a fart, every time I get the sensation of urges (I can’t tell if it is a stool or gas urge), I run to the bathroom. For the past hour, I just have been shitting little turds, which is annoying me as the stool is messy. My bottom is so irritated and I have to use the incontinence spray that you don’t have to rinse to soothe it.

The most undignified thing is, because I can’t trust a fart and I have a lot of gas, I am now wearing a diaper to prevent my underwear from being soiled. I already had one accident today that required a shower. With the comfort of the diaper, I can let loose and if some stool comes out, I don’t have to freak out and be constantly changing my underwear. I have taken some stomach stuff for gas so I hope it helps. I don’t want to take Imodium because I don’t have loose stool even though I know it would help the gas part.

Another lovely “perk” is nerve pain after moving hard stools. This rectal pain can drive people who have never been suicidal to become suicidal. Nothing is worse than a pain in the ass that no pain meds can touch. Sometimes the pain can last a few minutes or hours or days. It sucks. No doctor knows why, even the colon experts.

The worst part of this day from hell, is I have been going up and down the stairs all day as the bathroom is downstairs from my bedroom. I hope it doesn’t cause another flare. Yesterday’s flare is still giving me nightmares. My ankle has CRPS (complex regional pain syndrome). It doesn’t like movement. I am sure I will flare later tonight, despite taking a nap. Rest doesn’t always help my pain like some pain conditions. I hate the unpredictability that CRPS brings. I wish there was a way to control it but there isn’t. I long for the days when my pain was driven by activities during the day. Now, it doesn’t matter. I can be at home all day and I will hurt. I can go out a few hours to have a cup of coffee and write for a bit only to hurt later in the night. It is awful. I hate it. It has taken away all the things I love. I feel beaten. And then I will have days like today where I am crapping my pants. It’s too much. I just always hope that tomorrow will be a little less painful because that is all I can do.