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.

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.

midnight ponderings

Midnight ponderings

Tuesday night was very difficult for me. I was in a lot of pain and processing stuff that went on in my appointment with the urologist. I was feeling pretty depressed that self-cath is now present in my life and will continue to be for some time. Then I got into an argument with my family that night and my mood went from sour to suicidal quick. I planned on taking my life after I saw my therapist today. I brought the stuff with me as well as getting some stuff ready in case it didn’t work and I was put in the hospital. I packed a light bag and left for the bus stop.

I am not a morning person. I just remember traveling on the bus and then picking up my coffee with a little time to kill before I had to board the train to get to the therapist’s office. I was not all present while meeting with the therapist. I kept zoning out, partly because I was so suicidal. She asked me if I was going to act on it and I must have indicated that I was. Then she asked, twice, if I had ginger on me. Things at that point became fuzzy. I know I went into my bag to get the ginger to give it to her and then everything else was sort of a blur. She said that I would have to be evaluated and be inpatient. She had to call security to take me to the ED as she didn’t think she could trust me. We talked about baseball while we waited. I have no idea why I told her I was going to end my life and that I had the stuff with me to do it. I honestly am so fucking mad at myself for doing something so stupid.

The ED didn’t think I had enough intent to be inpatient so they offered partial hospital which I am supposed to start in six hours. Guess what, it isn’t going to happen. I would have to leave my hour in about four hours to get to where I needed to be. I honestly have no idea how to get there by T. I am just going to skip the appointment and hope that police don’t show up at my door. Therapist will be mad but I don’t care. I left the ED after five hours. I hope to god it is my last visit there this year. I hate the ED.

Soon after I left, my psych emailed me asking if I was ok. I thought that was odd. I answered it right away without thinking. I never got a response. I just sent her an email a couple of hours ago telling her I have another bladder infection and this time I am not taking the antibiotics. I am already feeling crappy physically. I know it is only going to get worse. My blood count is up from the last time I had my CBC drawn. It is only going to be a matter of time before the infection hits my blood stream. I am banking on this and it causes me to die.

The NP psychopharm I see foolishly put that I have borderline personality disorder as my “issue”. I don’t meet the criteria so I have no idea what she is basing this on. If she is basing it on past history, I still have no idea how that is relevant today! Just pisses me off because once those things are there, they cannot be removed. Just like the “female to male transgender person” “issue”. I don’t have an issue being FTM and I honestly still have no idea why the fuck the computer system would put that on. It just makes me so damn mad.

When I came home, my ankle exploded. It kind of went off a little bit while in the ED but soon as my foot was resting, it exploded and I have been in pain since. I have tried different meds and now it is just a waiting game as to when exhaustion will hit and I will collapse. I took the “substitute” anxiety pill so I will be knocked out the next few days, just on one fucking pill. I take this med sparingly because I don’t like it at all. I meant to tell her today about it but I forgot. The NP came by the ED to talk to me. She thinks I am seeing her next week but it is the week after. I can’t see her next week and I sure as hell am not seeing the therapist. I am mad as hell at her for wasting my time in the ED.

I need to shower sometime later today. I sweat so much yesterday it wasn’t funny. I was drenched. It was fairly warm and I was over dressed. My hair feels so yucky and the NP that told me I had a bladder infection wants me to take a shower after every bowel movement. In a perfect world, that might be doable but for someone with chronic pain, it is very exhausting. I haven’t showered since the weekend, so almost a week now. I just can’t motivate myself enough to do it. The therapist changed my diagnosis to recurrent major depression with psychotic features. I was thinking it was treatment resistant depression. The psych NP has persistent depressive disorder, which I didn’t even know existed. Either case, I am depressed. I am not bipolar anymore or maybe I never was.

Over the weekend, I sent my psych a pic of me smirking because I felt “devilish”. I told her I had met my aunt and said how she was doing as she is not going to be around much longer. She stopped eating two weeks ago so her time here is coming to an end. I am sad about this. I also gave a description about how my care has been going in her (my psych’s) absence. My psych responded that I wrote elegant and eloquent. And this is why I miss her so much. She values my writing where the other two women in my team do not. They don’t even see my writing as a tool to help me get better. And you know why they don’t know of this? Because they don’t ask! Maybe I did tell them I am a blogger but they don’t want me to do solitary things. Writing is solitary; you can’t get it done otherwise. But it is meant to be shared. And that is what brings me joy, or used to anyways. I am fighting the urge not to write as I am typing this because I think my words have no meaning anymore. A few of my readers have “fact checked” that for me and it is false. I have to try and keep this voice going as much as it is paining me right now because if I don’t, I fear I will lose myself in a way that I am not sure I can ever come back from. I have comeback from so many things. I am not sure I can come back if I get away from my writing. It is so very important to me even if I story tell about my day and how it went down. I think it is boring but maybe someone else finds it interesting. I don’t know. I want to thank YOU my readers for not allowing me to stop my writing. I now right now it is infrequent but I am working on changing that Because of YOU. You mean a lot to me because without you, there would be no blog. So thank you. I hope you are sleeping as it is almost 0300 EST. Take care until we meet again.

frustrated on so many levels

Frustrated on so many levels

I saw the therapist today. I was really nervous about it because I didn’t have a voice. First part was of her reading all that transpired since I last saw her, which was last Monday. In there, I had mentioned I was suicidal and she asked if I was safe. I hate that fucking word when it comes with being suicidal. I never know if I am truly safe. If it was put in the how likely am I going to act or something, the answer might be a little different. Each time I get the urges, the situation is different so I have different levels of coping with it. It might be some grounding, music, distraction, going through social media and getting support there, or just maybe sitting with whatever I am feeling to get through the moment. I have recently just stared at a wall while letting the feelings hit me, one after the other and I try not to think in those moments, which is hard to do. Some times I can write but lately I seemed to have lost my words (mostly due to being reported on my feelings) that I cannot express myself, not even in my journal. The words are there, I just can’t seem to put them in cohesive sentences. This is the MOST frustrating thing because writing used to be my escape and because of vigilantes, my escape has been hindered.

I left aggravated and angry. I was looking for her to offer something to appease the suicidologist in me but nothing was forthcoming. I don’t know if she was looking for me to have some sort of plan (I have many, some good and some not so good) or what. Her biggest thing was for me to be “safe” whatever that meant. While I was home reflecting on this, I basically realized I have four choices: 1) go to ED of some sort; 2) call my psych, no matter what hour as I most likely will be in real danger at this point; 3) stew with the feelings as mentioned above; 4) act on my feelings/thoughts/urges. I have a straight forward plan so as long as I can walk (presuming physical pain isn’t the driver of the suicidal escape), the plan can be executed with no one much the wiser.

The ONE thing no one understands about suicidality is the need to escape from the pain (physical and mental or either/or in my case). It is also true that if I have an angry row with a family member that has me feeling unworthy, useless, lazy, etc., my thoughts of escape increase because I feelings of being trapped are heighted and I will think of suicide as my only choice in the matter. I honestly have no way of conveying this and having a “treatment” for it. Yes, I can bring up CAMS (my preferred way of dealing with my suicidal feelings) but my therapist doesn’t even know what the fuck it is, and from the sound of it, is not up to the latest suicide prevention stuff. Honestly, I don’t know who is as there is a LOT of information out there.

The therapist also wondering if being that the institution I was at was good for me as I have so much anger at it right now as it got rid of my psych. I think part of this is mostly likely the grief of her not being there and right now I am in the anger stage of that grief. The frustrating fucking thing right now is that because of my voice being fucked up, crying hurts so I am unable to process it with a good cry. Even as I am typing this and letting some tears out my throat is starting to hurt in a big way. I think once I have this cry, I can possibly moved on. My psych is still there for me; she hasn’t left. I just haven’t been able to see her as she doesn’t have a new home yet. I am still her patient because she has said so and I believe her. If anything, I think she fears me leaving her more than I fear her leaving me. If that makes sense.

I am utterly exhausted right now, mentally and physically. My throat is fatigues and hurts from the twenty minutes or so that I spent talking to the therapist. I honestly don’t want to talk to anyone, unless it is in written form, for the rest of the day. The only thing I have eaten today is a donut and a coffee cake. That seems to be the only thing I want today. I may have the last breakfast burrito (if there is one) that is in the freezer later but chances of that happening are low. I might have to make some more tomorrow after my groceries are delivered. It is nice to have some pre-made food that I like that I can zap in the microwave for a few minutes and have a meal.

I don’t have any plans for tonight. I might read Harry Potter or just be on social media. I would like a nap but that has yet to happen. I just seem to lay down and my pain decides to act up. My foot is already acting up with the ceiling fan going. Airwaves are annoying it. I really shouldn’t have listened to the meditation thing the therapist had me listen to. It started off by thinking of the feet and how they feel and such. Both feet were killing me so it was hard to “let go” of the feelings and shit. Then that was the only thing I could focus on. When they moved up to the abdomen I started feeling hypervigilant of someone barging through the door and had to stop it. At least we tried it. I knew it wasn’t going to work as I have done similar shit while inpatient and it is always a trigger for me.

I had written in the notes I wrote for the therapist to update her that I was thinking of getting ginger gummies and just sitting somewhere to eat them. By the time I came home, the plan was set. I figured out the location and all the how, what, when, where, and why. I have the four choices listed above on which one to choose when those urges arise. I will be left to my own devices and the choice really is mine to make. No one can stop me, no one needs to know, and no one will be there when the decision will be made. I am on a precipice. Question is, do I have a hand (figuratively) to hold me back…

I’ve decided that I won’t tell anyone about my suicidal thoughts. Might mention them here but just the thoughts. No one seems to want to hear them anyway.