Category: cauda equina syndrome

CES, again

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

CES, again

I have been having trouble with the bathroom since surgery. My right butt cheek is numb and so is part of my genitalia. I thought it would have recovered by now but tonight after a bowel movement, I couldn’t feel myself at all. I knew I was touching myself but the feeling of wiping was not there. Now I know I have CES (Cauda Equina Syndrome) again and I am not happy about this. It is awful because I don’t know what kind of bowel prep I will need down the road. I am being frank about this because it is my life and now I have to deal with it. It is just complications from surgery and may go away with time but I know it will be painful. It always is. I am not looking forward to the burning pains or the other kind of neuropathic pains you get from nerve injury.

I have had a rough night and I should be sleeping but my brain is awake. I thought writing for a bit might calm it down some as it always does when I am restless. I went downstairs to my sister’s apartment for dinner and birthday cake for my brother in law. Today was his birthday. He was drunk as he was so difficult to handle. He would deny being drunk though if asked. He talked about the Orange Menance being a joke. Like we didn’t know this. It is all over the fucking news every day about him being in office is a joke. I just don’t understand why he still is there and not in jail but then I don’t want the zombie VP to be president because that would be worse.

Tonight’s discussion followed the good and bad of Jesus and the devil. My niece who is a scientist tried to intervene scientifically in the realm of things but alas was not listened to. It just came down to a matter of what your perception of god and jesus and the devil was and how good/bad a person you were. Thankfully the conversation ended there. I was feeling out of it because I still am not feeling good. I feel like shit on a platter. I did too much tonight by staying in the conversation and sitting for as long as I did. I should be out but I am still up because of this nervous energy I have. Mostly concerned that I won’t gain back my feelings again, the numb parts of myself that is new.

I have not dealt with this in some time. I was hoping it wasn’t going to happen. I am 11 days post op so I am still healing. I am just dreading it because I now have to be careful with my stomach. I have to watch what I eat and drink and take for bowel control. I fear that if I should have loose stool, I might not be able to feel it should it get loose loose. I would hate having to wear diapers again because of this. I was feeling fine until all this. Now I feel anxious and timid. I am not depressed though so that is something. I know that if I do lose my control of my bowels it will be a different matter. The loss of dignity that goes there is so great and there is no recovery from it. Some have laughed it off but only after years of dealing with it. This is still new to me and I just cannot fathom laughing this off after pooping my pants. I have a hard time even when I pee my pants, which thankfully hasn’t happened in some time due to the retention. I am still having to cath myself a few times a day. The last few hours I have been able to void on my own so I am taking that as a good sign that cathing might be a thing of the past soon. But it all depends on how things go. I know there are times I still don’t get the urge to pee. I am also waking up in the middle of the night to pee because I drink too much or my bladder just decides 3 am is a good time to use the bathroom. I hate the disruption in the night because my sleep is wonky as it is without the added bladder trips. I take anticholinergic meds at bedtime so they make me thirsty which really sucks when trying to sleep through the night. I need to talk to my urologist about this. Maybe she has some suggestions. I don’t see her until the middle of May when I have to have some testing done again to see if my bladder function has improved after surgery. The uro thinks two months is a good time to gauge it. I hope she is right but I think it will be longer. These nerves take a long time to heal and a two month time frame is too short, in my opinion.

Feeling like shit and crap I feel awful

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

Feeling like shit and crap I feel awful

I have been feeling weak all day. It is awful and there is nothing I can really do about it except fluids and rest. I have been trying to sleep but it hasn’t come. I am too anxious to sleep or sleep because of my med and bathroom schedule. I think once I am out for the night it will be good. I am still on steroids to calm this headache that pops up if I sit for too long. Tomorrow I need to call the surgeon as I have had some sweating on my back around the scar. It doesn’t smell horrible but the damn thing is dry otherwise so I don’t get it. Maybe I am just too hot for my own good, LOL. I just need to hold on for the next 15 hours or so when I can call the office. I don’t want to go to the ER if I don’t have to.

I asked my sister to take a pic of the scar and it looks good. No redness or swelling anywhere so this sweating is a mystery but then it could just be healing. I froze my room so am trying to warm it up again. I had opened the window the other day and had to close it as temp dropped to 39 outside and nearly 60 inside. I was cold and had to put on a long sleeve shirt. Hope that doesn’t contribute to the sweating episodes.

I have been in a weird mental state. I don’t seem depressed or suicidal and I find this somewhat disturbing that suddenly I am “fine”. I just worry about a setback. I sent a message to my therapist about it. Not sure if she read it yet. I haven’t gotten a response. I have a time tomorrow with her in the morning and I hope that I am semi awake. Our appointment last week didn’t go too well as I was out of it from meds. I still might be out of it as I feel so weak. I am trying my best to be with it but it is so damn hard. I just want to sleep but I can’t. so frustrating. I supposed if I took some Ativan or Zanaflex I would be out. Pain hasn’t been that bad today though I can’t seem to sit up straight without muscles tightening on me. The joys of recovering from back surgery. I am glad things went well and I can’t wait to talk to the surgeon about the surgery because I have yet to chat with him since before I was under. I have only seen his residents. This is partly due to the COVID-19 isolation that was going around the hospital so he wasn’t available. I am glad my pain is better but I am not liking the tightening of the muscles. I am glad I have Ativan as I think it works better than Zanaflex at times. But I might be biased. Benzos have always been good muscle relaxers. But the risk of addiction is what keeps them from being in use at times. And they are a hard drug to come off of when you want to stop them or need to stop them. Harder than anything, from what I heard. I hope I never have to find out because just missing a day and I am wicked sick with dizziness. I have been on Ativan for a while and know I have a dependence like you do most medications you take every day. I am sure if I were to stop my blood pressure meds there would be some side effects to that as well. Dependence is not the same as addiction. Addiction you need more of the stuff to achieve the high or whatever feeling you need. Dependence is when you are dependent on a substance through no fault of your own.

I just realized I haven’t done my meds for the week. I have Sunday meds so will do it tomorrow. I had planned a few days in advance just in case I wasn’t up to it. I am glad some planning worked. I have another few days of steroids that I need to fill my box with. I am taking it with Tylenol for pain. That is what they were giving me in the hospital so I am going with it. I will do my meds after my therapy appointment. I hope I am physically able to do it because it would suck to have someone else do it for me. It usually takes me ten minutes to do. We’ll see how long it takes with my back being the way it is. Probably will have to sit and do it not stand like I usually do. Standing has been a nemesis in all of this and I hate it. Just brushing my teeth hurts. I wanted to shower but I didn’t feel up to it. I don’t think I should take one while feeling like I am going to pass out. It might not be the best idea even if it makes me feel a little better. I will do that tomorrow. I need to change clothes anyway because of the sweating. I hope I sleep through the night. It has been a long time since I had a night where I didn’t wake up at 3 in the morning. I keep waking up because stupid bladder needs to be emptied. I am tempted to ask my uro for a foley just so I can sleep. But that might not help with the healing process of my bladder so I won’t call. I am tempted though.

Anxiety continues and panic is starting

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

Anxiety continues and panic is starting

I keep on being “ok” and then I will log onto the patient web thing and see my “procedure” appointment and I just panic. So I can go from a little anxiety to major anxiety in a short time. I hate having this much anxiety. To set things even better, I am having extrapyramidal symptoms in my hands as I cannot hold a pen without shaking. I took some Benadryl as that is what a google said was for fast relief. I was going to take an Ativan but seeing as allergies are out of control, Benadryl seemed a better choice as it will help the anxiety as well. If I feel drowsy I will sleep. I got nothing planned. I nixed going out. Even if I got the half and half, it would go to waste as I would be the only one using it and for 2 days I am not going to go through a quart so I would just waste my money. My waistline does not need Oreos. I still would like the cereal though. Oh well. I will make do without.

I finally was able to successfully test the virtual health thing, I think. I got it on my laptop and phone so I can use either tomorrow. I think I might do the laptop in the morning and then phone in the afternoon. I am not sure. I told my therapist I was having difficulties, and she said we can have a phone call session. I am so nervous technology is going to fail. But we will see tomorrow if all goes to plan.

I had like four of my hard cookies. They made good for dunking in my tea. Bladder is not working today as far as voiding on my own. I am writing down some questions for the urologist if I am able to connect for tomorrow’s appointment. I’d like to know if what I am doing is alright with her. I think what I am doing is okay but there are times where I cath more than 5 times a day and then there are days where I only cath 2 or 3 times. It totally varies on my urge to go. Sometimes it is strong and other times it is there but not enough to go. I can sit on the toilet but it takes like 5 minutes of sitting there to pee. I hate it. But then I hate cathing too. I got into a really bad fit last night about it. Mostly because it triggered a flashback but most of the time I can shrug it off. Yesterday was a day where things I normally shrug off didn’t get shrugged. I was having such a hard time and then there is this therapist in MN that keeps counseling me. I know she is just trying to be nice and supportive. But I just find it a little weird.

I had chili for brunch. Had tea as well. I don’t know what else I will have. I am not hungry right now. I might have cereal later. I am trying my best to not have anything after 10pm. Last night I failed. I was hungry so had a PB&J sandwich around 11pm. I just realized I am not going to have Starbucks until after surgery. What a bummer. They closed the Au Bu Pain near the hospital so I can’t have their coffee either. I am sad about that because I love Au Bu Pain. I wonder if the one in the Square is still open? I got to look next time I go there.

Tomorrow is T shot day. I plan on giving it after my appointment with my uro, that is if I don’t end up giving it around or after midnight if I am still up. I want to change my sheets but I will probably do that tomorrow. That should make me tired enough to go to bed early so I am not up all night. I don’t know if I am going to sleep or not. I am so anxious as it is. I am surprised I am sleeping. I slept all morning though because I was up at 2 bloody am with my damn bladder. I hope that I don’t have a repeat of this tonight as I need to be up at 8 am to be ready for my uro appointment at 9. Got three appointments and I don’t have to leave the house. Going to be weird.

Saturday Blog 07052020

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

Saturday Blog 07052020

I am feeling really depressed today. I have no energy to do anything. I feel like I should make some progress in my room so I might do that after I write this. My back has not cooperated much in standing so will be interesting to see if moving shit around causes it to flair up some. I got Matt Stell’s song “Everywhere But On” in my head so I got it playing on repeat. It is true as I have moved everywhere but on. I might share it with my therapist. I think she likes country as she was excited Zac Brown Band is playing at Fenway. This is the third or fourth year they have played there. I am not that interested as I think a ballpark should just play baseball. I hate it when they set up the stage and stuff. I just cringe. Maybe it is just me.

I sent a message to a reader because I haven’t heard from her in a while. She is doing okay but is really depressed. She is struggling and I felt her pain. I feel bad that people suffer from pain. It truly sucks when you hurt for more than a few weeks. It is like the pain will never go away. I have been trying to figure out if I will get pain relief when in the hospital for my CRPS pain and no one has been giving me an answer about it. The NP had said that if the pain medication the neurosurg team were giving me was not adequate they would consult the pain team and they are “top notch.” I am just worried they will only treat my post op pain and nothing else. I will be on my back laying flat and my legs will be raised so I am glad because my foot won’t tolerate being flat. It has a difficult time when I lean back and put my legs out. It will flare up in a few minutes but soon as I lean forward again, the pain dissipates a bit. It is still there but I don’t feel it as much.

Today is the anniversary of when I started therapy with the school counselor. I remember it was very difficult to open up about stuff and the voices were making things so damn difficult but I couldn’t tell anyone that. It was my secret and I knew people would not be welcoming with this news. Therapy only lasted until the end of the school year and then I saw a social worker for a year before she left after she got married. The other therapist I fell in love and felt she was just seeing me for my insurance money. Also felt like she took advantage of me because she knew I loved her. She wanted me to go to Northeastern just so I could continue seeing her. I had plans on going to Maine for college. But none of those dreams happened because two months after I graduated high school I ended up in the hospital. So by the time I finished high school, I had three therapists. I would have another 8 before I found the one I had for sixteen years. I would have one more then another a year and half later. I have been with my current therapist for eight months now.

Got a week and a half before surgery. I am so fucking nervous it is not funny. A friend that I saw back in one of my hospitalizations wants to see me as my sister is not going to stay with me. She will be there for moral support. It is up to her if she wants to. I won’t say no. I appreciate it as my nerves will be through the roof.