Tag: cauda equina syndrome

therapy didn’t go as planned

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

Therapy did not go as planned

Last night I wasn’t too tired. The infection must have gotten a little better as I had some energy. Either that or my brain just wouldn’t shut off. I was nervous about the therapy appointment today so I started writing down stuff I wanted to talk about regarding suicidology stuff that I have learned the past 10+ years. All of it was a waste of time, least at this time point. I went to therapy and we discussed what went on over the weekend. I told her I was feeling kind of suicidal but in passing. I ask her if she is ready to be taught and things went downhill from there. She comes at me with a bunch of DBT shit and that I need to learn to cope better by using coping skills, that things with my family will always be there and I need to learn to handle it differently. I took the information in, trying to wrap my head around it. I gave the example of my foot being a trigger and how interpersonal skills would not be helpful. Understanding why the foot is hurting me is not going to be helpful or trying to perceive what it is trying to say. I mean come on, this is a medical condition with a painful limb. You cannot fucking talk to it! You can’t even ignore it! She smirked when I said this then said there was some data saying something about dealing with it decreases pain. I told her we needed to collaborate and she said we are but I got the impression that she was still in the “I’m the expert, you are the patient, therefore, you need to follow what I say.” I left there feeling really bad and unheard. All the preparation that I had done was for nothing. Even the safety planning stuff that I brought in was left for me to deal with on my own, without really going over what to do when I am in crisis or who to call aside from some SAMSHA number. Like seriously? You want to know I am in crisis yet want me to call a hotline? OK. How does that even work? She also doesn’t really like me texting her outside of crisis because she may not be available. Okay, that is fine. I get that. She did say she would make herself available if I were in crisis. Convenient for that though, eh? But other than that I am to call a hotline. Mixed messages. I mentioned that narrative was important to me and that was shot down. It was totally invalidating that she just was not hearing me out and she just wants to do things her way as it is “in my best interest.” After we semi agreed which safety plan I was to follow, she wanted to make an appointment for next week. I said no. I would see her the following week. She then said I was mad at her. I told her I would be mad at her next week because I am not seeing her. She asked why I wouldn’t see her. I wanted so badly to say because I would be dead but held my tongue. There was no way in fucking hell I would see her next week. I am too fucking steamed about how the session went, or rather, didn’t.

Rest of the day went ok. By the time I was on my way home, I realized I didn’t eat anything all day. I wanted to make a chicken patty sandwich. My mother made lazy-man’s lasagna. It was good. I had some meatballs and a sausage. But I really wanted a chicken sandwich. I made it and the bread I used had a hair in it! Totally grossed me out! I never had that happen to me before. Now I want to throw the bread away in case there is more hair in it.

Now that I am relaxing and getting ready for bed, my pain has decided to ramp up. My foot is killing me and my ankle is starting to. Legs feel like dead weight. They are so sore and I didn’t walk that far. Tomorrow I am walking more as the office I need to go is further down the street than the hospital’s main campus. I am nervous about learning to self-cath. I read the info sheet the NP gave me. I need to get a small bag to hold supplies now. I bought some small baby wipe packages. I tried to find the one that you can refill but they didn’t have them. This sucks because I bought a case of wipes not realizing they were refillable wipes, not a box box. So I have like 96 wipes and no box to put them in. I will try Walgreens tomorrow. Maybe they will have them there or a different CVS. I just hope I don’t have to pay for the supplies. I have no idea if my insurance will cover them. I know I need a prescription for them. I am hoping they give me enough until I get paid next to order them. I really hate this is yet another expense to have.

The infection is still with me as right now I feel so wiped out. Sucks battling an infection on top of everything else. I really hope I only need one course of antibiotics to deal with this infection. I am not sure if they will retest my urine after the course to see if it is gone. Also don’t know if I will have to follow up with uro or my pcp for testing. I am leaning towards uro. Thursday I see the NP at my pcp’s office that is a psychopharm. I need to get a refill of my meds that I forgot to tell the other psychopharm about. I could request it through the patient web thing but seeing as he is going on paternity leave and I need to be in contact with my pcp anyways, I might as well have her do it. Gives me a chance to meet her anyways as she is new to the practice. Then next week I will be back to see my TG doc and see the RN for my shot. Because of the nerve damage in my left thigh and the last time I got injected by the RN at the hospital, I decided I am not going to inject the T into it anymore. The nerve pain I got was horrible. So I am having the pcp RN do it in my behind. I hate doing this but it’s either that or more pain. I hope he is a good shot at this. Some RNs aren’t good. But we will see. I don’t think I have gotten an IM injection as an adult so this will be an experience. I kind of don’t like it because I have a fear of being jabbed by someone else. It is a common thing with medical professionals. It’s easier to give someone else a shot than to receive it. It will be a day early but that is so I don’t have to make two trips back to back days. The RN is nice. I sent him stuff on cauda equina syndrome. He seemed interested in it and I told him I don’t have normal function of my bowels and bladder. I hope he tries to understand it. It will be easier for me to tell him stuff should things come up rather than beating my head against a wall because he doesn’t know. It is frustrating when you want care and yet the medical provider just doesn’t get it because they don’t know. I am tired and this is going on and on LOL. Until later, my readers.

hopeless and depressed

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

Hopeless and depressed

Since last night, I have been in a very down mood. I have been avoided using the word “depressed” to describe it because the people at the hospital told me I was making myself hopeless and depressed. I sent an email to my psych about it and have not heard back. I don’t think I will so it is just making me further believe that I am making myself hopeless and depressed. The chaplin I saw asked me where I picture myself five years from now. I said I don’t. I don’t see a future at all and I guess that pissed her off because the next thing I know, she is telling me I am making myself hopeless. The case manager said I was throwing a pity party for myself. I am just fed up with these so called mental health professionals. I don’t even want to see the therapist on Thursday. I really don’t see the damn point.

I’ve been resting most of the afternoon. Other than the burrito and a half sandwich of asparagus and eggs, I haven’t eaten much. I bought a pair of jeans. I got them a size smaller and they are tight because they aren’t “relaxed”. I am not worried as I know I will lose weight soon enough. And if I don’t, the pants will just go to good will. I am tired of fighting things. I feel so damn depressed right now and I don’t even know why. I wasn’t in a great mood all day but pain has hit and my big toe is swollen again, causing a pin being stuck in it feeling. I tried cleaning out the bed, thinking there was dead skin or lint there and came up empty. I also filed the nail so it is rounded and not straight. It didn’t work as well as I hoped it would. My foot feels like it is going to cramp any second. I would take a melatonin to knock me out but I don’t even think that would help. Pretty soon the ankle will start hurting. I am getting little twinges. I am not sure taking a pain med now would be okay. It might be as by the time it kicks in, it might stop the pain from getting worse. But sometimes that doesn’t work either. I might take some gaba to try and see if that will help.

I want to send a text message to the therapist telling her I am not doing well but I don’t think it would be wise. I am not sure she would respond until tomorrow and I am already sending her 2 scheduled texts about how I want to handle my suicidality. But I don’t know if I want to handle it. Maybe I will try not to keep myself away from me. I thought of sending her my blog “used to” but I don’t think it is necessary. I don’t want her to get a million texts from me all at once.

I know part of me is depressed is because I have had to go back to wearing diapers again. The bladder cramps have been causing leaking. Every time I go to the bathroom, I notice my underwear is wet. I gave in to taking Pyridium as I couldn’t take the pain and cramps anymore. Three days is enough. I sent the uro a message telling her of what I did and that I am hoping correctly that it is just readjusting to the medicine again. If I am wrong, I hope she will tell me. I also hope she doesn’t want a urine sample as the Pyridium can alter tests, making them falsely positive or negative. I just hate that this is an unwanted thing because my bladder is not functioning properly. I still don’t know if it is a worsening of my back issues or the back issues caused it. Kind of like what is going on in my CRPS foot/ankle. I don’t know if the CES made it more susceptible to CRPS or if the spasms caused it when they sprained my ankle. I may never know. But regardless, what is done, is done. I can’t change it. Which just makes me depressed.

Chronic pain, sudden death, and other stuff

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

Chronic pain, sudden death, and other stuff

**warning long read**
Last night on Twitter, a fellow CRPS (complex regional pain syndrome) person posted a link about CRPS and complications (https://www.practicalpainmanagement.com/sudden-unexpected-death-chronic-pain-patients ). One of them was that in certain patients, high pain caused a decrease in heart rate. This has been happening to me for some time now, usually precipitated by anxiety (for some reason, the anxiety happens when my heart rate is below 60 beats per minute and pain is above a 10). Most of the time the anxiety is a signal my pain is going to get worse, which further decreases my heart rate. This can cause sudden death eventually, especially in patients who have had the condition for greater than 2 years (I’ve had the condition for more than 8 years). This paper was about those that had the severe case of CRPS, though they didn’t specify which type (there are two types, type 1 being the gross appearance where the edema, purple color, and pain are noticeable and then type 2 (what I have) is less discernable) and more than one extremity were involved (I just have one, unless you count the foot and ankle as two). My blood pressure is usually lower than what it is normally when I am in a flare, another warning sign. Even though I am on blood pressure medication, including a beta-blocker, I am wondering now if the anxiety is not anxiety but possibly an arrhythmia caused by the pain. Of course, I don’t get this every day and certainly not when I am at the doctor’s office. I sent this article to my PCP and neurologist to have them understand the condition a little better as it gave specifics about the condition. Today I sent my pcp the article about sudden death with chronic pain patients and how methadone can some times lead to cardiac dysregulation. He wanted me to be on this but I now no longer do. As I am home most of the time, I really do not want to die suddenly for a family member to find me. It is one thing for me to die by suicide (which prevents me from doing that at home) and another to die from causes unknown.

I’ve had quite a week that has left me feeling ugly, gross, and perplexed. Monday I saw the therapist and while we were talking, I told her about the weight loss. I’ve lost around 30lbs this year and continue to lose due to not eating. Speaking to my psych today, she said there was a lot of reasons for the no appetite and the fact I physically cannot move around enough to make myself something to eat. The therapist, to me at least, was saying that I was controlling my intake as “it was the one thing I can control.” I wish that was the case but I would have done that long before now. My psych is going to reach out to her and I hope some understanding is made. I told the therapist about the events over the weekend with my mother not respecting my privacy. She (mother) again disregarded it as I was getting ready for the appointment. She kept on leaving the bathroom door open as I was undressed and I kept on closing it, which annoyed her. I did so because I didn’t want my nephew to see me naked. She said he wasn’t home. How the fuck was I supposed to know this when he leaves his door closed most of the time?? The therapist and I talked more about the abuse and how I feel my mother is always looking at me in a strange way that I cannot describe, which leads her to find something wrong with me so she can touch me out of “concern.” Even as an adult she watches me when I get out of the shower. Now when she happens to be in the bathroom while I am in the shower, I will stay in there until she leaves, even if that means drying off with the shower curtain closed. It totally makes me uncomfortable when she does this.

Another issue we talked about was how I feel about my body. I told her how I hated it and not just because I am in a wrong one. I feel ugly about it, especially how my face looks. Most of it stems from internalizing my father calling me fat and ugly most of my life. It disgusts me that I am fat but because he said so, I feel I need to be (I know that is weird but it is how I feel and the current weight loss is stirring up some very mixed feelings). We also talk about the urologist appointment the next day to try and ease my anxiety about it. I felt that there wouldn’t be invasive exams or testing. I couldn’t be more wrong.

I went to this appointment feeling nervous about it. I had a bunch of paperwork to fill out about the issues that I was seeing the urologist for. The doctor comes in and the first thing she wanted to clear up was my transgender issues and how it could be difficult as I am still biologically female yet transitioning to a male. I didn’t think nothing of it and felt it was okay (more on this later). I told her about the history and how the nerve injury caused my bladder to become dysfunctional and what my current symptoms were. She was thinking I could have small fiber neuropathy due to the small nerves being damaged while the bigger nerves were compressed. It made sense to me and somehow she thought is would also affect my stomach. I didn’t think anything about this but just thought it strange until I got the visit summary (more on this later). She said I would need urodynamic testing (this I knew would happen) and would I be willing to have it done today. At this point I am internally freaking the fuck out and I guess just to get the damn thing over with so said yes. She said she would see if there was an opening and she would be back. Major anxiety filled me at this point. She came back a little while later with a nurse. Apparently there was an opening before the next patient and I was kicking myself in the ass.

They brought me to the room and the test was explained. I had to sign a consent form to be aware of infection and some kind of urethra problem. I had emptied my bladder before seeing the doc. It was now an hour or so after I gave a sample and the nurse said she had to drain my bladder before the test. OK. There was 300 CCs. I thought that wasn’t bad. The test went on and I was to tell them how I felt while my bladder was being filled and when I got the urge or was uncomfortable. While this was happening the nurse decided to show the doc her whale watching videos that she took the day before. WTF. So here I am exposed with catheters in me and the nurse and doc are talking about the fucking whales and then showing me the pics as well. JFC. As they were talking, I didn’t want to interrupt when I got the fucking urge so waited until I could speak. When I got the urge, the doc said she was going to fill me some more until I felt like I was going to burst. That took another few minutes or longer. So I said when that occurred. They kept on looking at the monitors to see contractions and such. I then had to pee while the catheter was in me. They started to run water. Nothing. Then they tried me sitting in a commode. Nothing. I was trying to push but couldn’t for the life of me get the fucking urine out. So I told the nurse the only time I know I am peeing and when I stop is when I hear it. She told the doc this and left me alone for a bit to see if that helped me to go. It didn’t. Now I had to be cathed to get the urine out. While she was setting me back up again in the chair, taking out all the stuff she put in me, I asked how much did she put in me and she said 500 CCs. I thought to myself, no wonder I couldn’t pee despite me drinking over 1000 CCs before the appointment. She drained my bladder and I had more urine than she put in me. It was 800 CCs. So while there I had peed more than 1100 CCs of urine. I was brought back to the room after I cleaned up and put clothes on to discuss the results.

The doctor came in like 20 minutes later. It was around noon time. I hadn’t eaten anything all day and was starting to get hungry. My anxiety was still high from the testing and all the invasiveness of it. I am was having intermittent memories come back of the abuse my mother did as well as the traumatic medical exam I had when I was a kid as I sat there waiting for the doctor. I was trying to remain calm but felt myself zoning out, almost dissociating from the feelings of disgust, grossness, and violation from the past. Finally the doctor came in and she told me there were two kind of muscles that made it possible to void. One set was around the urethra and the other two were around the bladder neck. I had dysfunction around the bladder neck. So she wanted to put me on an alpha-blocker, which I knew was for retention. I was to see her in four weeks where she would start to taper the other retention med I was on that was started while on the psych unit. She also gave me some reading material about small nerve fiber neuropathy. When I picked it up at the pharmacy, the pharmacist told me there was a chance of orthostatic hypotension (basically dizziness upon standing as the blood pressure drops) so I was to get up slowly should that occur and some eye condition that was highly unlikely.

I felt so gross and wanted to shower when I got home but my pain flared up and I didn’t want to run the chance of causing more pain. I also wanted to eat something but because of the emotional state I was in, I lost my appetite and food wasn’t appealing. I really didn’t even crave anything. I was reading over what the doctor had given me and saw in my “issues” was female to male transgender (FTM TG) person. I kept on getting notifications from the patient web thingy about results of testing that was done. I logged on to see them then looked at the problems/issues and sure enough the FTM TG was there. I got really mad and felt like this was discriminatory. I sent the doc a message that I wanted this removed. It was after business hours so I didn’t hear back till the next day. After a series of messages back and forth, I learned that it was the fucking dumb stupid electronic record that had put the “problem” there and the doc couldn’t do anything about it. She let my PCP know about this as she agreed with the points I was making and she assured me that she did not see it as a problem. Also listed in the issue/problems was GERD (gastroesophogeal reflux disorder). I thought that was odd as I already had it but apparently, it could also be caused by the small nerve fiber neuropathy she was telling me about. In the paperwork, she listed that I could have a skin biopsy for the neuropathy and listed the two neurologists that do it. Oddly enough, I already had contact with them as one of them was the one to diagnose the CRPS.

The past two days have been rough with pain and suicidality. Tuesday I was going to end it but because of rain, I postponed it, least until my pain flared up wildly. I had given myself a time while home to do it. I was thinking about it and fantasizing about it. My psych had wanted me to call her but I was not going to. I knew if I spoke to her, she would most likely hospitalize me and fuck that. I kept looking at my means and kept trying to get the nerve to do it. I even thought of self-harm to try and distract from doing it but I couldn’t bring myself to. I really wanted to end my life badly. Around 5, I sent my psych a message saying she had my permission to look at the notes. I hadn’t sent any message to my psych about my suicidality and finally around 2200 or so, I did saying all the distress I was feeling the past few hours after she asked me who I saw that day.

I rarely have eaten since Monday. I have lost another 10 lbs or so since the end of July, making it around 30 lbs for the year. My clothes are baggy on me and I don’t like that. I like loose fitting clothes but not the kind where I have to really tighten my belt to keep them from falling down. The shirts are big but that is okay. Anything to make the appearance I don’t have breasts are okay with me. Yesterday I sent my psych a goodbye letter. I felt I had to because I really think I am eventually going to overcome the nerve that is stopping me from acting on the suicidal feelings. When I spoke to her today, I said as much. She wants me to keep in touch with her like I have, even if I send her a bunch of emails. She still wants me to be in touch with her should I feel like acting on my thoughts or thinking about acting on my thoughts. Trouble is, as I have learned the past few days, I cannot bring myself to call her nor even send her an email for her to call me. I am too scared of being sectioned or having to choose to go in voluntarily or not. I refuse to go back to the hospital. I will only go if I attempt and obviously, fail. I keep thinking of what the father of suicidology has said, “you should not kill yourself if you are suicidal.” I am trying to kill myself when I am not suicidal, which is slowly gaining momentum.

in a restless state of mind

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

In a restless state of mind

I had my appointment with the therapist Tues. We discussed the abuse. She asked if I talked to anyone about it. I said no. I kind of did when I was a teen but that lead to bad consequences and I never spoke of it again. Then she asked about my suicidality. She said that she had to keep me safe and I felt like we were going along the path of the “no harm” safety contracts that I swear was not going to work with me at all. But, again, she didn’t get more specific about safety. Just decided to work on a DBT skill, which I don’t even remember what it is. I am supposed to be working on it but fuck, I am in no mood to. I told her I would write the responses in a notebook but I’ve tried to find ANY of the million and one comp notebooks I have and have failed. No idea where they all went. I recently bought two. One I know is in my everyday backpack. Where the other one went, no fucking clue. My room ate it. I know when I am looking for something, one of them will make an appearance.

When I came home from therapy, I got into a fucking flare. My foot went fucking ballistic and stayed that way for almost 36 hours. I woke up at 430 am yesterday and just said fuck it. I was thinking on acting. And yet I was hindered by my psych saying I should call her when I was thinking on acting on my urges. Well, it was 0430 in the morning so I wasn’t going to call her then. I sent her an email and tried to go back to sleep. My mother can always be counted on to disrupt my sleep as she called around 11 or so to see if the goddamn windows were closed as it looked like rain. Thunderstorms were supposed to happen through today. Around 2 I still hadn’t heard from my psych so asked her if calling her later was okay and she responded giving me a time. She called before I could call her at that time and we talked. She asked why my pain is always the cause of my suicidality. I told her it is just too much. I had foot swelling Tuesday night that continued until this morning and it was so fucking painful. I had three different types of pain going on that were so damn high it wasn’t even on a scale. So I just decided it was time to end it. She said no or she would send an ambulance for me. Shit. We are to talk again on Sat. I really don’t want to fucking talk anymore. I just want this fucking suffering to end. My plan is still on. She said she has the pipeline dream of me being better. I told her at least one of us has hope and she said she will hold on to that for both of us.

I got a response from my wonderful PT about what to do about the back situation. She said there are specific exercises to help stabilize the spine and can be done in like 7 sessions. I am not sure if I want to go back to PT as I just ended. I told her I had other fish to fry and when it is done, I will be in touch. I read the report as it came in last night. I have a new herniation at the beginning of my spine at T12-L1. It is minor. The worst one is at L3-L4, which is in the middle of where I had surgery. That is the disc that has gotten worse and is near my L3 nerve root which could be why my bladder is being so dysfunctional. I feel like I am a ticking time bomb. This level is unstable. If the disc goes or if I see a surgical consult, I most likely will need a fusion. I am not going to have a fusion because everyone that I know that has had one has had more pain. From what I read, fusions were only to be for the neck, not the lumbar part of the spine. I am wicked bad at remembering where I read stuff, so not sure if it was a journal or what. Don’t even remember the year but that is what sticks out in my mind. I could be wrong. But it would make sense as to why so many people with fusions have had them fail on them. Not saying everyone with a fusion hasn’t been helped. I just haven’t found those people.