news broken and…

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.

not a good day

Not a good day

I woke up around 2 am to pee. I was up for a bit and felt like I should see my therapist today so sent a message to her. At 2 am. She sent me a response asking why I sent it at 2 am. So I didn’t see her. I feel like I should cancel tomorrow but I won’t. Voices are going bananas. The German voiced one is back. I have no idea what he is saying as his accent is so thick. I know that he wants me to die as that much is clear. So now there are three male voices. I thought I was getting better and this shit happens. I was able to get an appointment with the therapist for the 6th, the day after I see the neurosurgeon. I sent her a message saying that I was feeling suicidal and voices were bad. Haven’t gotten a response to ANY of my messages so I don’t even know why I fucking bother.

My mood has been low all day. I just want to sleep but I can’t because of the voices going around and around. I managed a shower and it further exhausted me. I wanted to shave my face and pits but it never happened. I just washed up and that was that. It took me forever to dry off as I was so tired afterwards.

I managed to have some lunch. I had some chili. Past few days I have just been eating cereal. Special K came out with a honey oat multigrain that is the bomb. It is so good. I really like it. It is cold today but I don’t think I will be going out. I was thinking about maybe heading to the Boston Public Library to do my research for my book but I am so damn tired all the time I don’t think I can do it. I can barely take care of myself. I still got a cold but it is finally going away. I just have a stuffy nose left over. Been taking 10,000 IUs of vit D. It seems to be helping a lot. I just wish this fatigue would go away. I am not looking forward to two appointments tomorrow. There is an hour in between them so not back to back. It is just going to be an exhausting day.

just stay

Just stay

This saying “just stay” has been kicking around the suicide prevention circles I have run across. Some days it helps me to focus on staying here. Other days, I want to scream why, I don’t deserve to be here. Today I am feeling a little hopeful because my psych sent me a message and it really made me feel like someone really cares about me. I am taking that with me so that I can do this Herculean project I want to do.

Last year when I was thinking of something to do about writing my book, I thought of writing a baseball history book about what teams were called before what they are currently. Like the Red Sox had many names before being called the Sox. If you look at the World Series, they are listed as Americans or red stockings. The Yankees were called the Orioles before they were the Yankees. I find this so interesting and seeing as there isn’t a book about it, I want to write it. One of my favorite authors, SE Hinton, always says “write what you want to read.” I always wanted to learn about the history of baseball teams so I want to write it. I am not sure I will have to go to Cooperstown to get the information I need but if I do have to go there, I will. I am not sure how I will finance it but I am sure there is a will there is a way.

Yesterday, I had therapy and it was a disaster. We talked about frustrated needs that Shneidman says contributes to suicide. She didn’t understand what these needs meant to me to understand why I am suicidal. She wants me to write them and then write the things that get in the way. That was going on and then the voices got unbearable. I asked her if she felt I was meaningless. At first she was like why am I thinking that. When I told her the voices were saying this and I needed her to tell me they were wrong she then said that I was not meaningless so that reality testing happened. Then she asked more about the voices and I said that I had lowered my dose. She flipped out in a very concerned way. She wants me to talk to my psychopharm about doing something to help the voices go down as this is a serious matter. I did send a message to the psychopharm but have not heard back from her. I also sent a message to my uro and she hasn’t responded either. I am going to have to drop a urine sample next week when I am back at the hospital.

I am coming down with a cold. The virus has been hanging around the house as my mother and sisters have been sick. I am treating it with rest, fluids, and vitamin D. I find that vitamin D helps respiratory and cold infections better than anything. There was a study I was involved in and D actually helps the cytokines fight infection. But the trick is you have to be out of deficiency in order for the D to work. Find out if you are deficient, get stable on D and you will be able to fight getting the cold better. I find that if I take 10,000 IUs for a few days, my cold symptoms go away faster. So instead of being sick 10-14 days, I am sick maybe 4-5 days. This works for me. It might not work for someone else but I am just throwing it out there. The cytokine is Hcap18. There have been a lot of studies with this and asthma. A Google search will help you understand this if you don’t believe me.

I made a cup of English tea. It is by Twining called Everyday Tea. I got it from an English friend I know on Twitter. The tea is really English as it is from the UK. I love it as it is a full bodied tea and is strong. It is really good especially on cold New England days like today. It is 14 (-10C) degrees out. Hope it helps this cold that I have. It is cold in my room because I have the window open. It is 64 (17C) degrees in my room. I love the cold and this temp suits me. I just put on a sweatshirt on top of my long sleeve shirt. My ankle is really hurting today. I have had to take gabapentin and extra breakthrough meds to try and quiet it. It feels like I am being stabbed and the pain is right through the joint making me feel suicidal. I want to shave and shower but it doesn’t look like that is going to happen today.

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.