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.

The 3 AM Blog

The 3 AM blog

I just finished having pumpkin pie. It is one of my favorite pies at Thanksgiving. I had a good Thanksgiving, or what I like to call, Turkey Day. I spent it with friends who live south of Boston. It was a very good time, good food, and good laughs. My friend’s husband picked us up and drove us home so that was really nice of them. No public transportation. Around 1830 yesterday, my ankle started to act up and unfortunately, flared up by the time I got home. It is still hurting me as the pain is down to the bones and there is a storm coming this weekend. We are supposed to get wintery stuff. Last I checked, the weathermen didn’t know if it was going to be snow or rain. I haven’t looked to see what they decided. It is supposed to end sometime Monday morning. I need to know whether or not it is going to be icy as I have an appointment that morning with urology. I need to make the appointment because my bladder is still giving me problems. I keep having spasms while cathing. I sent my urologist a message last night and she said to stop one of the medications I am on as it causes spasms. So now I am down to two urinary meds. She wants me to switch to another medication but she wanted me to get the price for it first. She gave me a website to see how much it would cost but I told her, right now I don’t pay anything. In January, I will and generics will be $10-$20, $50-$70 for brand name. I haven’t heard back so maybe Monday she will decide what to do.

The pain levels have been unheard of. Pain kept on going from a 14 to a 16, down to a 12 then back up to a 14 after movement of some sort. At one point I was crying because I was just hurting so damn much. I really wanted to die. I ordered some stuff and it will arrive next week. Tuesday I have the neurosurg appointment and will decide whether or not to stay then depending on what the doctor has to say.

The therapist had said that she has a lot of time saved up that she has to use before it gets lost. So I might not be seeing her as much this month as she needs to take time off. I find this kind of weird as she has only been with the hospital for 3 years. You typically don’t get that much earned time during the first few years you start working. It gets more the longer you stay but not until after the 5 year vested pin has been issued. It just seems weird, unless she was working in another department in the hospital and just 3 years in the department she is now. That would make more sense. It kind of messes up my plans on whether or not to stay in therapy if I am not going to see her that much. Maybe seeing her less will be better for a while and then when she is back to working more regularly, we can then work on some things, like a specific trauma. I would like to talk more about the abuse that happened with my mother and the rape that I have never spoken about. She has pointed out to me several times that she doesn’t know my background on things so it is a fresh relationship. I told her about the second relationship I had and not the first. I will get around to it one day.

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.