Category: cauda equina syndrome

First bad news of the year

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, recurrent major depressive disorder, suicide

First bad news of the year

I’ve had bladder pain all weekend and my uro is out of the office due to illness so she wanted me to see my pcp. My pcp wasn’t in the office so I went to medical walk in. The doc there was concerned I might have appendicitis so he had me down for a CT scan. The scan indicated everything was normal except my spine which had advance discogenic degenerative changes from L2-L5. Not the news I wanted to hear. I am already freaking out over my upcoming neurosurgeon appointment and this just added to my nerves, no pun intended. I am going to ask my PCP to tell him what has been going on and to see what he (neurosurg) wants to do. Maybe he wants to see me sooner than the 5th. I don’t know. My psych said that if I have surgery, she will visit me. Least that is one way of seeing her again. Though I rather it be her new office not my hospital room!

I’ve been in a mood since I came home. I want to self-destruct. I sent my psych a message that I am keeping things as best I can even though I want to plan right now (I didn’t tell her that). If I had some lethal method I would probably act on it. I am keeping focus on things other than suicide and that is very hard when you just want to end your life because things suck so bad right now. I did some Amazon shopping. I probably will do some more tomorrow as there are a few things that I need that I didn’t get. I just don’t want three charges all on the same card.

Voices have no calmed down despite me increasing the dose back to 4.5 mg of Invega. I might have to wait a bit. I canceled therapy for tomorrow because I just can’t go back to the hosp. I am so frigging tired and the stupid doctor hit my right heel to see if it caused abdominal pain that it flared up the sensitivity and my Achilles heel as well. I am in pain all over the place. Plus my ankle is in HUGE amount of pain. It locked up on me again when I came home soon after I took the AFO brace off. I haven’t eaten anything substantial but I gained five pounds since the last time I was weighed. I don’t know when that was but I was five pounds less. I am upset over gaining the weight. I was doing well to stay below 200 but I couldn’t stay off. I just had ensure when I came home and Gatorade. I am not hungry, even though I should be.

On the way home, I found out the GOP Senators were traitors like they have been the past two years and Derek Jeter got into the HOF. I am happy about Derek. He has my deepest respect because even though he was a Yankee, he played with heart and class. Unlike some people that will never make it into the HOF.

I am feeling really out of sorts. The voices are continuing to tell me I am meaningless and worthless. This has been going on for a week and I am about to snap. I don’t know what I will do but it won’t be good. I am trying not to give into my impish ways. I just feel so awful about my back and there is nothing I can do except wait until I see the neurosurg. I also got to wait two days for the urine culture to come back to see if I have a urine infection. That is a lot of waiting. The doc gave me the choice of going on antibiotics now but I didn’t want to be treated for the wrong bug so I decided to wait, which is the right thing to do. Just sucks. The urinalysis wasn’t positive at all so I don’t think there is any bugs causing the bladder pain. Nothing showed up on the CT scan so I am starting to think this is a CRPS thing. If I am right, this is going to be a problem when I have top surgery. I got to read more into Type1 CRPS. Type 2 is supposed to be the “bad” one. But I don’t have that so it shouldn’t be spreading to my bladder. UGH. I got to play medical detective because there is no one else to play with the clues. Though the pain is bad but not as bad as my ankle pain. Not choosing pains just saying. I hope I can sleep tonight but tomorrow is shot and pay day so I doubt it. It’s already 11pm. I will probably give the T at midnight. Sleep for a few hours to wake up to pay some bills then sleep some more. I want to get a haircut tomorrow. I kind of fucked it up as I went wild but I don’t think I did a too bad of a job that my barber can’t fix.

My sister is sick and when my other sister told me I laughed out loud because she opened up all the fucking windows in the house when it was like 18 degrees out. Fuck. Serves her right. Dumbass she is. I have my window open and I only got sick because my mother doesn’t wash her hands or cover her mouth when she coughs, and she has had a bad cough. Her foot doctor sent her to her primary as she had a bad coughing fit. UGH. They have her on antibiotics, which is good. If they have her on something else, I doubt she will take it. She will pay for it but she won’t use it. I don’t get that at all. Meanwhile I got to remember to budget my money this month so I can get my meds. I forgot last month. My bad. January is tough. I don’t even know what my monthly insurance is going to be yet. I haven’t gotten the invoice yet. I am thinking it is going to be at least $232, might be more but I will stick with that for now.

just stay

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, suicide

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.

baking and the tireds

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Baking and the tireds

I woke up around 9. I had energy but I didn’t feel like getting up. I had to bake the zucchini bread, which I did do eventually. My mother made my custard pie for my birthday tomorrow. She is having a party for me. Little does she know that it will be my coming out party. I am not hiding who I am anymore and if someone calls me my birthname or “she”, I am going to correct them. If I am meant to be here, I damn well am going to be who I am and not who I am not. I am a male and that is all. I try to be a good, kind man.

After I baked, I got really tired. I went up to my room to relax a bit. I had to be careful with the damn catheter. I had tied the bag to my leg so I wouldn’t be touching it while I baked. I seriously am just so depressed that this is my life now. I will always have to either have a cath placed or do the cathing to excrete urine because I can no longer do it on my own. And there is no reason for it. There is some kind of nerve damage going on but nothing to indicate where it is coming from. I am so frustrated.

My pcp sent me a message this morning. I had replied to his from Friday, I think. I was upset that he didn’t want to treat my pain. He said that with all the medication changes the other docs and the psychopharm are doing, he doesn’t want to add to it. I understood where he was coming from after I had a good sleep and was clearheaded. The concussion is not helping me stay focused on things. I have been having memory problems and my rationale has not been in good judgment. I wrote back to him a few things to keep him up to speed. I don’t see him again till Feb. That is a long way from now. I also see the neurosurgeon a day before his appointment.

My therapist had wanted me to think about going to a DBT (dialectical behavior therapy) group. I thought about it but I also have a lot of questions about it. I wrote them down the other day. I hope that I remember the notebook I wrote it in because I also want her to write the stuff she was telling me to do to express my feelings in the moment when I didn’t have words for them. I talked to a friend about going to this group as physically it can be taxing. She said to give it a go and see how it fits. If it doesn’t then I can always leave it. I wonder if my therapist will think so. I have to be honest with her that this might not be for me as I haven’t had much success with outpatient group therapy.

I am absolutely dreading my birthday party tomorrow. I know there is going to be a lot of pronouns and it is just going to stress me the fuck out. I guess I can talk to my therapist about it. Might help me to unload the fears I have about stepping up this far with my family. I know they aren’t going to be accepting. Some will, some won’t. But if I have to be here, why not let me be the man I am?

dumbass 674 word blog at 1 am

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, suicide, suicide attempt

Dumbass blog at 1 am

I cannot sleep even though I took some melatonin. Or I am fighting sleep because my ankle continues to be stabbed repeatedly in the same bloody spot that past 7 hours or so. I lost track. I am just disgruntled and want to fucking die but really am not sure what I plan to do is going to fucking work.

My bowels are backed up so I just took some Miralax. At 1 am. So I might have a bowel movement in maybe 12 hours from now, which will have me on the subway. I am brilliant, aren’t I???!!! I am so tired of keeping track of shit, literally and figuratively. I sent my therapist a text saying I won’t be seeing her tomorrow. But it’s still technically Sunday so that means today and the appointment is for Tuesday. My concussed brain fucked up. I am ready to give up on everything and just starve myself.

I posted some IG videos and pics today. I look like death hungover. Really, I look terrible and might take down the pics and video. I can’t believe I put them up to begin with. I am such an idiot sometimes. Ok, maybe all the fucking time.

I see the OT later today. I need to leave the house in about 9 hours. I am seeing her to talk about cathing. I am going to try and see if she can show me the best way to cath while lying down or sitting on the bed as that would be good on days I am in so much pain and don’t want to go downstairs because of causing more pain. I know eventually I will have to empty the container/urinal or whatever I use but the hope is not to be going to the bathroom when my pain is a 12+. She is very knowledgeable about spinal cord injuries and referred me to see someone that actually knows something about cauda equina syndrome AND CRPS! I am going to make an appointment with that doctor soon as I know what the hell is going on with my back and if I need surgery. Sucks I probably got to wait till next year to know as the holidays are up and I am sure the head honchos in radiology are on vacation. If I have to take the MRI again at the hospital where my surgeon is (MRI was taken at an affiliate hospital) then so be it. I don’t want to continue to lose function. I think my legs are starting to lose their stability as when I go downstairs, they shake. I have to go one step at a time or they just feel unstable but even then I have to hold on to the banister with two hands to make sure I am not going to fall. Hence another reason why I need to be taught to cath at the bedside. I will really be “set up” once I learn. I will have food (Ensure) and water so I really don’t need to leave my room except for appointments or something. HAHA OMG I have become an invalid or maybe I want that? I don’t know. I am just thinking of ways of staying off my damn fucking stupid ankle because standing hurts so damn much. Every time I stand up from bed, my ankle bones feel like they are being crushed.

I can’t stand this agony anymore. I really don’t know if I will go through with my idea tomorrow (today). I want to but I feel like a fucking chicken if I don’t try. I mean shit, I have been planning all fucking year and have not attempted. Came close a few times but did not attempt. I am starting to feel like such a loser for not trying. Just want to tempt fate a bit and see what happens. One day I will try it or maybe I will die in my sleep. What is wrong with that??