Tag: cauda equina syndrome

a blah Saturday

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

A blah Saturday

Past few days I have been feeling off. Last night I again got into feeling sick and weak. I haven’t been eating much past few days. Today I just had Ensure so I could take the antibiotics. I decided to take them as I feel really crummy and I don’t want to end up in the hospital. I just hope it isn’t too late because I feel so damn weak.

My mother is having a party for my youngest sister as her birthday is tomorrow. I don’t feel up to being around people. I am in pain too. Ankle has been a fuck most of the day. I talked with a transman today via text. I got the service from my pcp’s office. It was nice talking to them about trans stuff. Other than the therapist, I really don’t have anyone else to talk to. My family isn’t supportive. I was feeling down last night because of the dysphoria. I really wanted the breasts gone and to have surgery this year but that isn’t going to happen. I need to have full use of my arms until this construction is done. If I have the surgery, I won’t be able to move my arms fully and that will cause more problems between my sisters and me. I don’t think I am ready mentally for surgery as right now I am so suicidal. I really wanted to end things today but I just felt so weak I didn’t want to leave the house only to pass out.

Took my meds early tonight. I increased the Cymbalta to 60 mg twice a day the other day. I haven’t noticed a change in anything yet. I don’t have an appointment with the therapist this week. I got to text her Monday to see if I can see her or wait till next week. I really don’t want to see her this week but will if she wants to. I sent her a couple of texts but mostly just about baseball and chronic pain as CRPS awareness is this month. I sent her a meme about it. I also sent the NP psychopharm the blog about being in chronic pain that is a chapter in my book. Tonight is daylight savings so will be losing a fricken hour. My sleep is already so fucked up. Ever since my bladder has stopped working right I have been waking up between 2-4 am to empty it. EVERY SINGLE NIGHT! It’s killing me waking up and then not being able to go back to sleep. I am tired all fucking day. I don’t even drink coffee in the morning anymore, not like I am up in the morning, but still. I only have Starbucks when I leave the house and am going to the Square. Tues I see my neurologist. I am going to have her look at the MRI and see if she sees anything worrying. I also need a refill on the gabapentin. She apparently is the only doctor that can prescribe it for some reason. And it will have to be in a new order because the damn hospital got rid of it all together. I am still mad about this. They have fucked my meds so much it’s not funny.

unable to sleep due to anxiety

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

Unable to sleep due to anxiety

I have been feeling anxious the past few hours. I took 0.5 mg of Ativan, which probably wasn’t the brightest idea as I usually take 1 mg. I started writing in my journal about why I was anxious, mostly because of my upcoming appointment with the therapist. I just don’t know if this is the start of twice a week sessions or just a one time thing of meeting twice a week. I am hoping to get out of Wed session but won’t know of that till Monday. Ugh. I don’t know why I am nervous other than the fact I don’t want to be cornered into sessions. I still am highly suicidal so on the one hand, it will be good to have therapy twice a week but on the other, I want to die so I don’t want to meet twice a week, hence the anxiety.

I have four appointments this week that are stressing me out. Three are mental health related and the other is for uro. I am nervous about that because I don’t know if I can talk openly about how this self cathing thing is making me feel. It is making me feel more disabled because I am falling apart physically and I don’t like it. I don’t like that I got to keep track of when was the last time I went pee all the time and the thought of putting on a timer or alarm to cath or try to pee just doesn’t appeal to me. So I am just drinking less than I normally would just so I don’t have to pee more than I should. I hate being in this place. This whole thing also has made the constipation worse. I really think because I am not using the muscles to empty my bladder which are the same muscles to have a bowel movement, my bowels have decided not to move so much, even with taking laxatives and stuff. I just can’t deal. No one understands and I don’t even know who to talk to about it. Just makes me feel more suicidal.

This salivary gland thing is not getting better like I thought it was. There is this pressure on my throat from the swelling. It’s not painful, just uncomfortable. I look like a pelican as I have a pouch of swelling under my jaw. It is making the muscles tense and it is so hard to relax. I guess I should take some more Ativan just to relax the muscles so I could possibly sleep tonight. I just emptied my bladder, which wasn’t much in there like I thought there would be. Hopefully I can sleep through the night because I really don’t want to be up all night like last night.

DDDAAAAAAAA YANKEES LOSE!!!!! I am so happy the Snakes choked again. The Houston Astros are going to the World Series with the Washington Nationals. I am rooting for the Nats to win the Series. This is the first time ever they have made it to the Series. I partly stayed up to see who would win as the top of the 9th, the snakes tied the ballgame. I was so happy the Astros won the bottom of the 9th with a homerun.

In addition to the four appointments I have this week, I also need to make four phone calls. One is to the uro’s office to make sure I have the right office I am going to. I got to ask the uro about why she wants me to see an occupational therapist. She told me she would refer me but I am not sure why I have to see one. Maybe when I tell her I have the hang of it, I won’t have to. I am sure it is up to me but other than them giving me tips on how to carry the stuff, I don’t think they can be of help unless they can suddenly let me grow a third hand. The other one I need to make is for my food stamps. I need to find out if paying for private insurance can count as an expense so I can increase the money I get per month. I am disabled so I might be able to have this new medical expense with the catheters on too as it’s like $50/mo for it.

My suicidal mood is up to planning a date again sometime soon. I can’t help but think about it because it just is what I want to fucking do. I don’t want to live to see my next birthday. My rebirthday is coming up next week. It will be two years living as G legally. I really love it and wish the rest of my transition could go through but unfortunately it can’t right now because of this fucking construction business. I found out a few weeks ago, it isn’t happening till April. Well, that is all well and good as I will be fucking gone by then. I don’t want to live to see my 44th birthday. I just don’t. I can’t stand living this way anymore, between being in pain every fucking day, being depressed, and now medically falling apart…it is just too much.

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.