Category: cauda equina syndrome

outside looking in

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

Outside looking in

Last week, I wasn’t feeling well. Each day I was feeling more and more sluggish and sleepy than the day before. Monday I used the bathroom and noticed some swelling under my chin that was not there before. It felt really hard. I didn’t want to go back to see a doctor nor did I want to spend time in the ED again. I had finished the antibiotics for the urine infection I had so I am thinking there is no way I could have another one. I was wrong. I went to urgent care and sure enough, my salivary gland under my chin was infected. The PA (physician assistant) wasn’t sure if it was bacterial or viral so put me on antibiotics with a referral to an ENT. I was supposed to meet up with friends but I felt like shit and had to cancel. I went home after picking up my antibiotics and went to sleep.

Next day I was to see my TG doc. My mood really sucked that day. I just wanted to be in bed. I still felt like crap but I had to get my T shot and discuss the transition with my doc. It went okay. I had my shot and then I figure I would just go home and sleep. I couldn’t. Pain hit and I was again suicidal. I texted the therapist when I got home saying that I was struggling. We talked for a bit and she made sure I wasn’t going to act on my thoughts. I said I wouldn’t today. Wed morning she texted me asking how I was. I told her pretty much the same as last night. Wed was a really bad day. I was in such a rotten mood. Pain was hitting me because of the storm that was coming. I wanted to ended it that day but it was supposed to be raining. It wasn’t so I was pissed as I didn’t get up till after 12 to know this (room is dark as I have window with a darkening curtain). I didn’t do much that day. I just stayed in bed. That night, as is now becoming my usual, I woke up between 2 and 3 am to empty my bladder. My ankle was hurting so fricken bad. I sent off a text to the therapist that if the weather was formidable, I was going to end it either today or tomorrow. I was done. I had scheduled texted it so I could delete it if I wanted to before it sent. I woke up around 815 or so yesterday and was going through stuff. I was so fucking depressed but the wind was really howling and it sounded nasty out. I was on the fence on whether I would go through with it or not. The text was sent and I used the bathroom. I came upstairs and there was a missed call from some Boston number. They left a message and it was the therapist. We chatted and she wanted to send an ambulance for me. I had her talk to my niece and she disposed of the ginger I was going to use. I was then to see the therapist later.

I was really nervous as I didn’t want to go back to the hospital. I got some coffee and went on my way into Boston. We talked and things went well. She was open, really open, to what I was telling her and how I wanted to talk about being suicidal. She wanted me to come in Monday. I really didn’t want to but I was afraid to say no as she might say I would need to be in the hospital and I didn’t want that. We devised a way to convey to her when I am close to being suicidal again but not going to act on it within 24 hours. I don’t know if I will go through with this. I said I would but I am not sure I will in that moment. I wanted to go through with my plan today but I am just so damn exhausted. I was supposed to call ENT and all I did was call to make an appointment with the psychopharm, the new one I have that works with my pcp. The appointments were supposed to be 30 mins long but for some reason, I got booked an hour. I guess that is ok. I have the appointment on Wed. I am going to try and get out of therapy that day when I see the therapist on Monday.

I wasn’t sure I would be able to write about this today. I am still in a really bad place and the anhedonia is really bad. I have no joy doing anything anymore. Writing has become so hard for me. I haven’t written in my night journal in so long. I think I last wrote in it the week I got discharged from the hospital. I am overwhelmed with everything. This new stuff with my bladder hasn’t been easy as it is interfering with my sleep. I wake up in the middle of the night and it just throws me off. Sometimes I can go back to sleep but it takes a while to get there. I am still losing weight because I am not eating. Yesterday all I had was a pumpkin scone. I was able to make a chicken sandwich today. It has been the only thing I have eaten. I just have no appetite the past few weeks. This whole new change with having to cath has really made me feel more depressed than I have ever felt. I also don’t have much support other than with my support group. I finally was able to have peace with my middle sister as she was freaking out about the disposal of the caths. I can’t deal with anything else medically going wrong this year and the stupid salivary gland thing was my last straw. I don’t want to see another new specialist this year. I know I need to because the swelling is still there despite being on antibiotics. I do feel better physically but not 100%. It could just be that I have another urine infection. I haven’t figured out how to get a urine specimen while cathing as I need a third hand. I bought some sterile bowls. I hope then I can just collect the urine there and then pour it into a cup.

I shaved and showered today, though not my face. I have been growing whiskers on my face so I let it go and then when I can’t stand it anymore, I shave it off. I haven’t been great at showering this week. I seem to go once a week, if that. I just don’t have the energy to do it. It exhausts me trying to wash up and dry off, especially with whatever is going on. The TG doc did a blood count so my white counts are within norms. I still feel yucky despite this. I need to change my sheets this weekend. If I don’t wake up at 3 am again, I might do it tomorrow. It needs to get done.

in the abyss with the black dog 2

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

In the abyss with the black dog 2

Someone left a comment on my blog and I didn’t realize I left out how I felt when I wrote that blog. So I am writing this again using the same title as I feel it is most appropriate. I sometimes get off target when I start with a title. I can sometimes get lost in the telling of my events that I forget to mention how I feel.

I am struggling emotionally right now because pain has become really bad. I also am having a hard time adjusting to keeping track of my bladder and how much I drink. I am becoming so stressed, the thing with my vocal cord muscles are tightening up again. I am finding it hard to talk, especially with my hard of hearing mother. I have to basically yell for her to hear me. I just have been feeling so down and out. I feel like there is a black cloud following me once again. I was hoping going on the duloxetine would help. It’s been a week and other than some minor pain relief, I am getting no relief from the depression. The doc told me if in two weeks I see no change to increase the dose. It really takes longer than two weeks to see a change with antidepressants.

I know my sister is causing me stress because she continues to not understand my current medical situation about the self-cathing. I just can’t deal with her ignorance. I think that is also tensing up the vocal muscles. I hope I don’t lose my voice again.

I still have been having these sleep attacks where I need my pillow. I feel lightheaded and need to lay down. I sometimes fall asleep. Other times I am just laying down resting. I don’t know if I have a bug or what. I just feel really tired, more so than usual. It could just be stress, which has been growing for a while now. I just don’t know what to do about it as coffee doesn’t really help me to stay awake. I was able to shower today, hoping it would wake me up but it just exhausted me. My ankle has been hurting me all fricken day so maybe pain is causing me to be so fricken tired. I still need to do my med boxes for the week. I am just about ready to give up on things. I just can’t seem to find a point in going on. I want to end this miserable existence. Maybe this will be the week I do.

in the abyss with the black dog

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

In the abyss with the black dog

Past few days have not been easy. Wed I got the cath taken out and was shown how to self-cath. To my relief, I am able to void on my own a few times a day but not all the time. It also takes a while for me to go and I can’t force the pee to come out. If it doesn’t after more than a few minutes, then I have to cath. It hasn’t been easy as I keep waking up at 0300 every night to pee, even if I don’t have the urge. I did last night and I wasn’t over the toilet so I basically peed on my underwear. I had a really full bladder as soon as the cath was in, urine was flying everywhere. I cleaned up and was upset about it. I had a hard time going back to sleep.

Also on Wed, I emailed my psych about should I call her if I am in a crisis. She said I should call the people I am working with now. I felt, and still feel, abandoned by her telling me this. In her reply, she asked if we had done a safety plan. I ignored the question. Earlier tonight as I was trying to write this blog, I sent her the blog I wrote Tues that describes everything that went on and how miserable I felt. I had texted the therapist yesterday saying I was having a hard time and was planning to end things soon again. All she wanted to know was if I was safe this weekend. I give up trying to tell her how I feel and how suicidal I am. Now I am truly alone as I don’t really have any mental health professional to call when I am in crisis, aside from going to the emergency room.

I was able to go to the grocery store today and make a dinner. I made my chili cornbread casserole dish I like. I made it really spicy. It is so good. Will be even better tomorrow. I will give whatever is left over to my barber as he loves the dish. He isn’t working Monday but he will Tues. I have to be in the Square anyway as I got to go see my TG doc. It is just a follow up. I sent her an email last week telling to please don’t say anything about my weight. I have been having issues around it and feel like if she tells me to lose more weight, it will just feed into my not eating. There already have been a few days where I have not eaten anything all day. I haven’t weighed myself but will tomorrow morning when I get up, provided I get some sleep tonight. My foot has been throbbing since yesterday at 0400 because of a storm that is passing through. It is really driving me crazy and I just can’t seem to get comfortable with it, even if I have it on a pillow. It is really bringing me down as well as trying to keep track of the times in between urinating. I am supposed to cath four times a day so that means roughly every six hours. With me not having any urge to go, I need to keep track of the time before I get too full. I also need to keep track of how much I drink. Just so much shit to keep track of. I thought keeping track of my bowels was hard, and it still is. I have been really constipated since this new urinary issue. I think it is because I no longer sit on the toilet so much and the muscles aren’t being used like they once were. I restarted taking the fiber pills. I have to be careful with them because one time I took too many and they made me sick. I had really bad gas pains. It was terrible. I think it was because I didn’t drink enough fluid after I took them. I always make sure I drink at least 4-5 ounces of fluid after I take them.

All week, I have been feeling kind of sick. I have been having chills and my head has been feeling like it weighs a ton. I have been so lethargic it isn’t funny. It could just be because of the infection that I had. I am feeling better today but there have been a few times where I thought I was just going to doze off again. I kept checking my temp but it was normal. My blood pressure was low as well as my pulse. I might have just been dehydrated. I have been fighting sleep the past few hours but I wanted to write a blog. I just been having trouble finding my words lately. I have so much to say, I just don’t know how to say it. I get tied up in the language. Throw in the haze of gabapentin and it is really hard to concentrate. But I am writing now and that is all that counts. Whether or not it makes sense, that is up to you, my readers.

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.