Last night I called it cousin and he asked if I needed anything. I said I needed to go food shopping so he said he would take me today. So I went. Then I went to the post office to drop off a package. Came home put the groceries away. Then showered. After the shower, I made something to eat. Spoons were totally used up and then some by this time. I was hurting big time. Back was in spasms. And I got a headache. I needed to lay down so around 3 I did. I rest for about 50 mins when my med alarm went off for my afternoon/evening med. I stayed up for a little while and then I had to lay down again. My head hurt so bad and still does despite taking tylenol.
I had a hard time sleeping last night. I didn’t go to bed till 4 am or after. I was afraid I would have weird dreams and I did wake with some weird ass dream again. They just creep me out more than scare me. Half the time I awake and shake my head at the weirdness of it all. It might make sense in the dream but it doesn’t make sense when you wake up.
Last night around midnight I started thinking of suicide and how I would do it. I texted my therapist and told her she needs to ask what my level is from now on. She asked me if this was a comment or a request. WTF seriously? I didn’t have to say anything. I could have just kept my mouth (and fingers) quiet. I already had planned this out before. Today I was reminded of a tweet I wrote in Dec, “I just realized with my “proposed” plan, I could finish what I started 25 years ago. Question is what do I have worth living for today I didn’t have back then?”
If I am conscious at my next therapy session, I will ask my therapist if I have a life worth living. Because right now, I don’t feel I do.
Covering all our dreams with rust
I hear this lyric in a song by Mary Chapin Carpenter called “On and on it goes”. I have been in pain since I came home around 1 pm. I didn’t want to leave my bed but I forced myself to. I wanted to keep at least one of the two appointments I had today. I missed uro because I just couldn’t get up. The depression is getting worse. I can’t do early morning appointments anymore. I just can’t wake up for them because I am not a morning person. It takes a great effort to be up by 0900. That is if I sleep. I did sleep. I just didn’t want to get up because I had the why bothers.
I have been in a rotten mood all day. I don’t know why as baseball Spring training started today. But my mind hasn’t been on baseball. I’ve been in so much pain and the depression is taking more and more joy from my life. Psychopharm NP wants me to think about ECT. I would but it would probably mean another hospitalization and I couldn’t go for that. I am serious about dying this time around.
I posted on twitter that I needed to lose 20 lbs for top surgery. My pcp thinks it will motivate me to lose weight. All it did was motivate me to die. I feel really stuck right now as I have hairy breasts and no means to get rid of them any time soon until I lose the weight. I might lose some weight while I am recovering from back surgery. I just got to be careful not to gain it back.
I am supposed to see my therapist tomorrow. I really don’t want to leave the house. My legs are killing me and the thought of walking all around the hospital campus to get to the building she is in, makes me so tired. Wish they still had the loop shuttle but they don’t anymore. The shuttle traveled to the various buildings around campus. I used it when it first started but that was more than 10 years ago. I haven’t seen it since my back surgery in 2006. It was a nice service to have.
My left calf, ankle, and foot are beyond painful right now. I have been trying not to move too much but soon as I settle down, bladder needs to be emptied. Driving me nuts. Yesterday I went to the ED because I thought I had Cauda Equina Syndrome again. I lost control of my bowels and it freaked me out. The NP for my neurosurgeon said it just provided more evidence that I have tethered cord. Surgery is in 5 weeks from now. Guess I will have to be in a diaper until then so I don’t shit my underwear. I feel so awful. Then when everything came back normal, I felt even worse. I feel like I am wasting everyone’s time. I asked my psych if I made the right choice and she said absolutely. I felt slightly better. She would have told me flat out if it was the wrong choice. I just wish I didn’t live in fear so much with my body malfunctioning. It is so hard to know what is and isn’t wrong. Hate going to the ED but they are the ones that will know if something is really wrong or not. Rather have them say so than me worry over it, losing sleep and such. The exhaustion I am feeling now is because I’ve had so many appts the past few weeks. I had 4 last week and 4 this week. Been walking so much my right foot/ankle is acting up again. I really need to do the exercises again. Just hope it isn’t so weak that I have to start all over again. Been 7 months since I stopped physical therapy. I haven’t kept up with the home program. I haven’t even used the brace. Might tomorrow as it is supposed to rain. Weather has been awful with the barometric pressures increasing and decreasing.
I told my therapist I would make every effort to see her tomorrow but I am in a lot of pain. I wish I could have a ride there. Speaking of rides, I got to call tomorrow to set up an appt with them. It would be one less thing off my mind if I have The Ride in place so I can use them to go home on days I am really tired or have a lot of appts. I imagine I might need it after my surgery because I am sure my blood counts will be low and I will be anemic.
I will try and write another blog tomorrow after therapy or to say I didn’t go. I want to try and write at least every other day or 5 days a week. It has been hard because the depression just wipes me out and I feel so terrible I can’t get my thoughts coherent enough to write. I hate it.
Saturday Blog 08022020
I didn’t get much sleep last night. I went to bed around 5 and then woke up around 0845 to pee and I have been up since. I got my haircut but I have yet to make my dirty gravy that I want to make. This is in preparation of my upcoming surgery. I want to have some gravy so that I can make some quick meals when I need them. I plan on making some burritos but I got to get bags that are freezer quality. I have to buy the bags my next pay period.
I was telling a writing friend about the trouble I am having with this essay I’ve been working with. She said to start over. That isn’t a bad idea. Or I could just cut out the parts that are gloomy. But I feel that if I am able to write what keeps me here then the bad stuff will be minimized and counteracted. Not sure if that is the right word or not but works for now.
I am so damn tired. I wanted to take another shower as I had my haircut but I am hurting too much. Ankle and foot are smarting big time and I know standing for 10 minutes isn’t going to help matters. I really don’t want another painsomnia episode. I also had some delicious mac and cheese my sister made. I know that is making me tired as well. I hope I can sleep at a decent hour and not wake up in the middle of the night to pee. That is the sucky part of having a bladder that is dysfunctional. I hate that I am having to empty every couple of hours because I get the urge to go. I am not sure if this is “overactive” or not. My uro wants me to be on a medicine to calm the bladder so that it isn’t crazy but I still found myself going every 2-3 hours which drives me crazy. I am going to talk to her about it when I see her on Wed. I just hope the appointment doesn’t go longer than planned because I rescheduled my psychopharm appointment to an earlier time that day. The uro nearly always runs late. But she is thorough so it is definitely worth waiting. But if it comes to an hour late and I still haven’t been seen, I am rescheduling because I don’t want to miss my psychopharm appointment.
I just got an inkling to call my father as I haven’t heard from him in a while. He has been dead nearly four years now. I miss him, something I never thought would happen. I was not happy with him at all. He abused me so severely I am still in therapy for it. The new therapist hasn’t heard his tales. I will bring it up sometime during next session. I am sure she will “love” him.
News broken and…
I broke the news about my having surgery and my mother burst into tears for god knows what reason. Even after her breakdown she didn’t know why she cried. She obviously doesn’t want me to have surgery. She doesn’t understand and my youngest sister tried to get her to. I don’t know how much of it was because she couldn’t hear or just couldn’t tolerate talking about it. My middle sister was adamant I was being selfish because I didn’t think of my aftercare. She doesn’t want to take care of me so I will have to have home services if I need it. Fuck. So will have to set those up as well as meal plan as I will be on my own and as much as I like Ensure, I really don’t want to be on a liquid diet while I recover. I will have to make sure I order some. I already have a $200 grocery tab going. Not sure I will have $40 for a case through Amazon.
I just googled the surgery and it is approximately four hours or more long. Fricken crazy. I wonder if I will have to shave my back. I got a lot of hair back there. The testosterone has made me so damn hairy. I hope I will be okay with everything. My sister was thinking of all the disasters that could happen. Thanks but I am already imagining walking in the hospital and being wheeled out. I have no idea what will happen if that happens. I might have to go to a rehab hospital for a bit but the house is not handicap equip and unless they give out loans to make the house accessible, I am not sure what would happen. Granted we are adding rooms to the house so I could take one but I would need an elevator to get to the second floor or some kind of lift.
I went to Starbucks today to try and write an essay and it didn’t happen. I got into watching traffic and social media. I should not turn on the WIFI but I did and well, 145 words got written. That was it. On the way home my foot acted up and two hours later I got the worse pain spasms ever. I was screaming they were so fricken painful. I just wanted to die. The voices started to ramp up during this time so in between screams I am hearing orders to kill myself. I couldn’t move so I just sat there being tormented. Once the pain meds kicked in, I was able to go downstairs for dinner. The voices are still murmuring in the background but not as troublesome. God they were so fricken loud. One of them is still trying to break through but I am ignoring him. He is eventually going to get pissed at me and I hope not because that will mean I have to listen to him and that will mean hospitalization. I wish I could get hospitalized without my family knowing where I will be going. Sucks I have to tell my mother where I am all the fricken time. I am 44 I think I can handle shit on my own like I have since I was 15.
Today is the official day I got diagnosed with cauda equina syndrome. You can google it or check out my blogs about it if you want. I am not going to say more about it. Because my psychiatrist and I first met some time this month, I think today is perfect to pick for our anniversary. I just sent her an email with my thoughts on it. Figures I would have a flare on my left ankle/foot on this day just to spook me. Having this kind of pain, numbness, and loss of function is what sent me to the ER, on my psych’s urging. She knew then something was terribly wrong and then when the residents called her, she told me at 4 am that I had this horrible condition. I still am and never will be 100% recovered. This is why I am hoping against hope that my surgery doesn’t have complications and that I can walk out the door instead of being wheeled.