neurosurg appt and other things

Neurosurg appointment and other things

I didn’t want to get out of bed today. I didn’t sleep well. I was up most of the night in pain then in the morning I kept on having to run to the bathroom because of bladder and bowels ready to unleash themselves. I didn’t know if I would be able to go to my appointment because my bowels were acting up. They settled down but I was so fricken tired. I never showered like I wanted to. I stunk. I honestly don’t remember the last time I showered. Probably last week. It was snowing all day so walking was not the best.

The neurosurgeon had no idea why my bladder is not functioning the way it should. There is nothing he can see but thinks it could be a tethered cord and I have to get a special MRI so they can see it. He also wants to get images of my thoracic spine so it is going to be a long time on the machine. My back isn’t going to like it. Once I get the images done, I come back and we will discuss what to do. It doesn’t sound like the injury to my bladder is going to be helped either way. All we can do is prevent more damage from happening. I talked with the NP psychopharm before the appointment. I apparently sent her what was going on and like what usually happens, I forgot I sent her what I wrote. I am kind of feeling suicidal as this is pretty hopeless things for my back aren’t going to get better. Even if I were to have surgery, it would just be as a preventative thing, not to fix what the damage done. I can’t go to my happy place now even if I wanted to end things there. Too much fucking snow. I might have to get a hotel.

I’ve had no appetite today at all. I didn’t even have coffee. I had 3 OREO cookies and that was it. I came home from my appointment and went into a flare. Actually, I think this is the flare from Thanksgiving as I don’t think it ever went away. Nothing is touching this pain. I canceled the appointment for tomorrow with that psychologist I was supposed to see. I just can’t go out for the third day in a row. I am exhausted. All these fricken appointments that are back to back are doing a number on me. I am surprised I haven’t had more flares.

I’ve thought about my therapist all day today. She is on vacation but I wish I could have had a chance to talk to her. I see her next week but it doesn’t sound like there will be too many appointments this month because of her needing to take time off. I still haven’t written about why I should discontinue therapy. I might work on it tomorrow. I really need to think about it. Therapy for the most part has helped keep me here because the therapist wanted me to live. I just never shared in that aspect that I need to live. I feel like I should die. I always feel like I should die, that things will be better off if I were dead. Now that I know neurologically I am fucked, it doesn’t help keeping me here. And even though I never thought about having a relationship with someone, now that will never happen because I’ve lost feeling in my sexual stuff. I am okay with it but for some reason it is just another thing my fucking illness takes away from me.

great wide open

Great wide open

I did a few errands today and got my haircut. Today is week 60 of my transition so I posted pics on my FB page. I also posted to Twitter for those that aren’t on FB. I then sent the pics to my sisters. My youngest sister said that I looked like my father. I honestly don’t see it. She also said I lost weight. Thirty pounds since April and I still continue to lose. The increase in the Invega dose has increased my appetite some but not to what it was. I do get hungry on some days but I really don’t eat much. A sandwich will be enough to get me through the day. Tomorrow is Turkey day. I will be going over a friend’s house where I know I will stuff my face with turkey and stuffing because it is my favorite meal ever. Actually, turkey and stuffing with cranberry sauce any day of the year is good to me. And mashed potatoes. There used to be this roast beef place that was in front of the hospital where I worked. They sold the best Thanksgiving sandwich. It was amazing. No sandwich has come close to it. I can’t even make it at home. I have tried though. Sometimes I will get the wraps, turkey breast, stuffing, cranberry sauce and roll it all up for a sandwich but it isn’t the same.

Yesterday I had therapy. I don’t see her again for two weeks because she is on vacation. We were talking and I asked in all seriousness, why I should be in therapy. It was a valid question. She had no objection to me not being in therapy though she doesn’t advise to stop as I am suicidal. She wants me to write about why I want to discontinue therapy. I have to think on it. The thing is, since I was 15 I was made to feel that because I was depressed and suicidal, I had to be in therapy. There are millions of people who are depressed and suicidal yet they aren’t in therapy. Some can’t afford it or have insurance for it. I am not saying I don’t have a serious mental illness. I know I do have it. I didn’t have therapy most of this year and have only restarted the last five months as the therapist pointed out. I can’t believe it has been that long but it has been. Time seems to have stopped for me since my psych left. I sent her the transition pics and she is wow’d by the change.

I am not sure why I have to be in therapy. Other than processing old traumas that I have not done doesn’t seem like a good reason for me. I could stay just to process and then move on. I know it won’t help the suicidality much or maybe it will. I don’t know until the trauma is processed. I think the therapist likes me. She didn’t say it yesterday but I just got the sense. I was kind of out of sorts as the voices were not present and I felt so damn alone. I was trying to tell her how alone I felt and she had no clue. It was a tough session. She kept on reading my texts that I sent her. Apparently she can read it from her computer. I don’t know what kind of app that is that does it. I know I was feeling paranoid about her. I kept thinking she was going to laugh at me at any moment. She didn’t but it was a sense so maybe I can’t really judge my senses right now.

Mary Chapin Carpenter is coming out with a new album next year. I don’t know when as she is still in the process of making it. It makes me happy that she will be coming out with new music. Only question will be, will I be around when it does get released.

you never loved me like I loved you

You never loved me like I loved you

I am listening to Brett Young because his song “Mercy” is in my head. I am feeling low. Despite the soundwaves bothering me, I am listening to music because I need the distraction. I wish I could say that I had some kind of day but I can’t. I’ve been sleeping most of the day. I have no recollection of when I went to bed. I know that I took heavy duty drugs as I feel so hung over. I said in a tweet that I “OD” on gaba but whatever I took was not gaba as I was so out of it. I wet my underwear because I woke up too late to get up to pee. When I did get up I was a fucking zombie. I really haven’t drank anything. I tried the last few hours as I needed to take some miralax as the bowel have been stuck. Now that it’s about midnight, I think they are going to unleash.

I thought about telling either the psychopharm or therapist or both about what happened last night but I don’t think I am going to be cause I am too afraid of being punished. Or worse, being forced into another hospitalization. I am not saying I don’t need to be in the hosp, I probably do, but I don’t want to go there because my ankle is being a fuck right now and if I can’t control it with my meds at home, there is no way I would be able to control it while on a unit somewhere. Worse case is that the NP restricts my meds to a two week thing which will suck. I am so afraid of that happening because I am so suicidal but I don’t have any intention of overdosing on my meds. I just want to take ginger or a knife to the chest to end things.

Last night I was curious on how my psychologist friend died. I did a google search and found out. I wish I didn’t. He died by suicide. I broke into a million pieces. He is the second friend of mine to die this way in the last five years. I wish there was something I could have done to prevent it. He had been posting just once a day, which is kind of not like him. I met him on Twitter. I even went to his office to drop off cookies. We talked about cooking and stuff. He loved to cook. He sent me this awesome Christmas recipe for a cake that I love so much. It is Nantucket Cranberry cake. It is so damn good. I am hoping to get some ingredients tomorrow for my chocolate zucchini bread. I want to give some to my therapist and to share some to my friends on Thanksgiving. I don’t think she will mind a few pieces gone. Least, I hope so. I would make two, and maybe I will. I have never been good at separating batter so I might have to make it twice so I can have some for breakfast. I really love it. Sucks I was out of it today as I wanted to make cookies. Guess it will have to be another day for that. I just want to make the zucchini bread and that will be all. I think I can do it both at the same time so I don’t have to wait for one to be done for the other to go in the oven. HA. Genius!

You are king so go into the light…

You are king so go into the light…

These are the words the voices have been telling me since Tues. I haven’t had commanding voices that were severe until tonight. I contacted a couple of friends and they helped me to get through until the medication kicked in. It has been a week that the voices started. This never bodes well. I know it is because of the stress of the death of my aunt and going to the wake and funeral. My family is very loving so it wasn’t like I was awkward or anything. I just didn’t want to say goodbye to my aunt. It hurts so bad having her gone. But she has been gone longer than her physical body ceased to exist. Parkinson’s dementia made her into a shell of a person that just became silent and I think that was when we really lost her. I feel so bad for my cousins who watched her deteriorate. It must have been so painful and I really hate that this disease not only affected my aunt, but her son and his family.

I seem to have caught the family crud that has been making its rounds to all the family members. I am congested. I took a mega dose of vitamin D and will take another tomorrow to ward off the virus. I had my flu shot so I hope I don’t get a strain that is not in the vaccine. I honestly haven’t been really sick since 2008 when I got double pneumonia. God I was ill for a month and took forever to get my strength back.

Beginning of Dec I have a lot of appointments. I have an appointment with the psychiatrist that was assigned to me when my psych left. If the NP does not give me my Ativan, the way I take it and a 30 day supply, I will go back to him. I am tired of this “discussion” where it is only her points she wants me to see not mine. And I don’t think it is a good idea to mess up someone’s med regimen because of long-term effects. I just cannot tolerate this. I see the NP Monday and I will calmly explain that I understand her concerns but I do not care about the effects.

I hadn’t peed in six hours so I cathed and as I was doing so, it was a long void. I was trying so hard not to clamp off the catheter but a spasm occurred and urine flow stopped. Now I have to try again so I don’t wake up before 6 am. I am going to try in about a half hour or when I am finished with this blog, whichever comes first. I really hate that this is my life now. That I will be having to catharize myself forever now or end up in the emergency room because I don’t have the urge to pee. I feel so humiliated. Just increases the suicidality. I found out today at the OT appt that this is nerve damage. I thought it might be due to medication but she said not according to the urodynamic study. I feel really sad about this. It’s just another nail in my coffin. I can’t take my back constantly being broken down and worrying about facing surgery all the time.

Monday I am supposed to talk with a behavioral med psychologist. I hope it isn’t because my “team” told him I was not compliant with my care, meaning not taking my medication or skipping appointments, etc. I go to mostly all of my appointments except if there is good reason not to, like feeling sick or being in pain. I just am having a major problem with the urine thing because it just screams at me that I am disabled where before I knew I was but I really didn’t want to face it. Now it is staring at me in the face and I can’t deal. The depression is making me feel like I would be better off dead. And now the voices I should just take a bottle of pills so I can be king to go into the light. I have already decided I am going to end my life before my next birthday. It is just a matter of time and a few weeks away. I just hope I don’t end up back in the hospital when I see the NP next week. I don’t know if she will think going into the hospital will be a good idea and I hope she doesn’t because it is NOT a good idea, especially before a holiday. Just really bad to go into the hospital around a holiday.