High levels of pain and new development

My pain level for most of the day has been a 14 since 4 am when I woke up to pee. Ankle/foot have been either together or alternating with the pain. Either my ankle joint is being hacked with an axe, foot bones are being crushed, or now an “L” shaped pain has started which totally prevents me from moving the damn thing. I just want to die and I am racking my brain on how to do it seeing as how I was going to do it didn’t pan out and didn’t work.

Today I found that I have diminished feeling in my privates. I can get slightly aroused but either have a weak orgasm or none at all, which is frustrating. I know I don’t talk about sex that much on here but the disc that is doing whatever to my bladder nerves also controls the nerves to the other parts of my genitalia. Although I wish to have no relationship with it, I have no choice because nerve damage will make phalloplasty difficult so I’ve choose not to have bottom surgery. However, now that this stupid disc is wreaking havoc on these nerves, I might as well not have a sex life of masturbation or with someone of my choosing. Thanks Cauda Equina Syndrome for really fucking up my life, and not in a good way.

As the compression seems to be causing slow diminished effects it is hard to know what level this injury is coming from. It is making me so damn suicidal. But like I said I need to find a way to do it. I still have the ginger plan. It is just finding the ginger to do the trick. I am going to try ginger beer next. Or a ginger shot that I found on Amazon. Sent a pic to my therapist and she got upset with me. Oh well.

I emailed my psych to let her know what was going on. She wants to know what my neurosurgeon says. I am thinking I probably will have to get a new MRI with contrast. I am going to suggest that an IV be placed so access is there. Otherwise, because I am a hard stick, it might be difficult to administer the contrast. My only worry right now is what effect this is going to have on my bowels. Right now I am backed up so I am kind of grateful for that but I need dynamite to get the shit out. OT has suggested Miralax so I am trying that. I am also wondering if the back pain is being masked because of the pain meds I take. Today while looking for a book my back flared up but sort of settled down. Then I was standing doing something when pain said to sit. I’ve been sitting with pain since then but it isn’t above a 4. If it was higher, then surgery would be next on my mind.

I really like my therapist (ptx) even though she is a hard ass. She pushes me and I like that about her. Also, I really didn’t think I had bullshit but she says I do. She wants to keep me on track of what we talk about and stay on it, not derail because I am feeling emotions about it. I am driving her nuts with the text thing. So I’ve decided to send the worrisome stuff to my alt phone so it is out of my system/head.

I can’t really the last time I had a number 2. I was going good for a while now I’ve stopped again. I hate constipation. You might think this is gross or maybe something not to talk about but this is what I deal with and shit I deal with goes on my blog. You don’t like it, find something else to read. I am scared of this development. The whole purpose of not going through phalloplasty was cause I liked my clit a lot. If it is no longer going to work then I am not sure what I am going to do. A sex life isn’t important to me but I’d still like one if it should present itself. If I should find a female I like and we hit it off i don’t want it to end because i can’t function. I never dreamed of having someone long term in my life but i do want someone to cuddle with.

If you are reading this and it cause discomfort due to issues of sexual abuse or something, please let me know and I will place a trigger warning so someone else doesn’t.

Ok maybe a little blogging

Been doing a fair amount of walking today, which wasn’t my intention. I tried to nap but noise kept me up every time I thought I was going to doze off. Foot/ankle are all swelled up and hurt like fucking hell. Pain is easy a 12 right now. Feeling so fucking suicidal. Bones are just aching and feeling crushed. It is always the trigger. One day it is going to set off the gun and swear once it is in motion, I am not going to stop. Be foolish to. I can’t take pain getting worse or my back being a time bomb. It is always half my goddamn foot/ankle. Going to be a long night. Glad I took my pain meds early, though might need another one in a few hours. Hate taking pills all the fucking time for this.

I got the start of PT next week but with my voice being shot, I don’t think I will go. I will just get a referral when I can speak without it hurting so bad afterwards. I am supposed to go back to laryngology in 3 months. The PA said I can cancel if I am “better”. Honestly the woman is whacked. Should send her a message and see if she knows why the whatever it is is making it hard to speak. I never asked her that.

Temps are supposed to drop tomorrow so I am going to be hurting. Temp went up to fricken 80 today. I thought we were done with hot temps. But that is Boston for you.

Mood has been awful today. Just feel so hopeless and with pain hitting me at night, just makes it worse. Really don’t see how this is going to change. Was supposed to have therapy tomorrow but I canceled. Too painful to talk. Never thought I’d lose my voice in so many ways. First is writing and second is literally. Guess my psych is not going to see that book published.

2019May13 Misery and Insomnia Continues

2019May13 Misery and Insomnia Continues

I barely slept last night. I was up till around 0530 because my ankle decided to go up to a level 12 at midnight and stay that way most of the night. It went down to an 8 when I woke up around 10 but after I brushed my teeth, made lunch, washed my dishes, and folded my bedding, pain shot back up higher. It is now around a level 13. I am so disgusted.

I was so frustrated and had bad urges in the early morning hours. I was in such despair. I realized around 4 am that if I go in the hospital, I am not going to have my meds at my bedside. I would have to walk to the nurse’s station to get meds and then walk back to my room. Walking is not a good thing when you are in a fricken flare. So I emailed my psych this and haven’t had a response. I sent her another email asking her if she is going to force me in the hospital. I am done with messaging her today. Either she responds or she doesn’t. I told her I can talk to her tonight or tomorrow, or the rest of the week. I don’t care but I am not going in the hospital. It isn’t like being on a psych unit you have a call bell to have the nurse come to your room. And because the nurse needs to scan your wrist band to give out meds, it is just not a good situation for me.

I am fricken exhausted. Past two nights I barely slept more than 8 hours. I am running on fumes. I had coffee because I needed it. I hate this is another day of not being able to do anything in my room. I haven’t done my PT exercises and don’t care to. I have been doing the calf thing trying to get it loose. I have not used the new band for the foot exercises. I am just so frustrated I don’t want to do a damn thing. I have been doing the foot thing where I am trying to get my foot to be flat. Because my calf is tight, my foot is always bearing on my toes rather than be flat. I have been this way for years so I don’t think that is going to change. I tried it while I was on the bus and train Friday and it was killing my muscles. I am just not used to it. I try and hold it for a little longer.

My psych just responded and wants me to call her tonight or tomorrow morning. For some reason I am scared. Even though I have known her more than half my life, I always fear she will throw me in the hospital and throw the key away. I know this irrational. So I will call her later. Rather face the music today than tomorrow. I will be a nervous wreck if I wait till tomorrow morning.

To the person who commented on my blog yesterday, I hope you are feeling a little better today. I know you are probably hurting a lot. You will get through it even though it might seem impossible right now. Hope you are continuing to read my blog so you see this message.

I took some gaba to help with the pain. Not sure that was an good idea if I got to talk to my psych tonight. Last night I was a little dissociative before trying to sleep at 130am. I have been doing anything and everything I can to control the pain. It most likely is flaring due to the weather. Temp dropped about 14 degrees last night. I so cold. I had to put another blanket on my bed because I put my fleece one in my bag I was planning to take to the hosp. I still am hoping to be a free bird this week. Not sure yet. Will find out when I talk to my psych tonight. Hence why I am scared. She very insistent Friday when we met. I know she is right but I am getting upset on how it will be and it hasn’t even happened yet. A friend said to “let it work” but I am very sure she has never been in the hospital recently, or at least where I live. If I had a therapist, maybe things would be better. The social worker got back to me about the therapist situation. Unfortunately the director is in Africa for a few weeks so she doesn’t know what is going on until he is back. Wonderful. Just reinforces the notion I am a hopeless case no one wants to take on. Other might be helped but after 28 years of getting help, it hasn’t worked out yet for me.

Tales of the Midnight Demon

I’ve pretty much have been in a flare the whole week. It has been go go go past few days. I was supposed to rest today but I stupidly ordered my groceries to be delivered today. I had used a different app, which I will not use again because of the 20 items I ordered, 13 were delivered, 1 item was supposed to be refunded but was substituted to another similar product I don’t like. So I have 3 bottles of Starbucks dark roast coffee. I will try it. If I don’t like it, I guess I will dump it. I have no use for it and no one else like Starbucks coffee.

I did an errand after my deliveries were put away. Got annoyed with the bank my mother uses. Every single time I go, there is a problem even though my mother put my name on the account. I hate this bank so much! Then I went to pick up my meds. I had to make two trips because one was ready and the other had to be pre-authorized by my insurance.

I came home from the 2nd trip and immediately in a flare. Both times I did not wear my AFO brace. My leg, which has been acting up lately, got really painful on my walk to the pharmacy and only got worse on the way back. I was in such a flare up I couldn’t bear to listen to sounds. This meant I couldn’t distract by listening to music. I just rested in agony. I took my pain meds and some gaba. I stayed on Twitter for most of the time trying to distract. I was also on Facebook. Nothing was helping the leg pain and I knew it was from walking too much. I must have walked miles in my house, going from my room to the kitchen to the living room and back to kitchen thousands of times in the past few weeks. I am not walking correctly. I overusing my leg muscles as well using muscles to compensate for the overused muscles. Only way to remedy this is to completely stay off my leg. This is hard to do because I cannot stay in bed. If I don’t feel well I can but I need to have coffee and eat so need to go to the kitchen as well use the bathroom. Now I really need to limit going downstairs.

As I was resting and keeping track of the game, the extreme suicidal ankle pain exploded. I so overwhelmed and intense suicidal ideations occured. I wanted to end things tomorrow (today). I was thinking of emailing my psych to tell her I’ve had it but decided to call her instead. I paged her and she called me back right away. We talked and I told her how dire I was feeling. I told her I had two suicidal pains around my ankle, one worse than the other. The worst one was why I was calling. She asked if I was going to act right away. I said no. She asked if I needed to be picked up and I said the ER is not what I need right now. We talked some more about the new med changes and how it will be a few days until I know if it helps or not. One dose isn’t going to help, though it sort of did. I told her I didn’t think I was going to be around for my niece’s graduation party. She said we will take it one day at a time. Then she said I needed to call her when I got up. So before noon, I will call her, if I am up. I said I would but it is almost 3 am so is probably doubtful I will.

My foot has been doing the dystonia thing again. It is part of the reason I am still up. The area where the extreme suicidal pain is still hurts but not as bad. My foot has swelled up pretty good where it feels like it is going to burst. My veins have popped up giving my ankle a bluish hue. The ankle bone is also been hammered by unknown entity. I hate bone pain so much. I’ve taken two doses of gaba. I am contemplating taking a third. If I am still up around 4 am, I will.

Today has been such a shitty day and is not over yet. A friend wanted to give me tickets to the Sox game last night. I was in a major sensory overload flare when I was asked and I had to decline. I really hated doing so because baseball is my love. But I knew walking to the park and finding my seats and staying for a minimum of three hours would really kill me after having a nasty flare up. I made the right decision and my psych agreed with me. She was saying no, no, no which was basically doctor’s orders. I am under her clutches again and I fear I am going to burn her out. I am so suicidal and want to fucking act but like I said in my previous blog, I don’t want to do it in my room. I was thinking of doing it Friday but it is going to fucking rain again. Fucking weather. Being pissed off about this is not helping. My psych asked if I was going to act in the next few days and I told her it was a coin toss.

I honestly have no idea if I am going to survive this year. I got the impression from my psych and I think I heard her say not on her watch or something to that effect. What the fuck is wrong with me? Why can’t I fucking go through with my thoughts?? I feel like such a fucking wimp. I am so annoyed with myself. If I loathed myself before, it is 100x more.

My psych is going to try her damndest to keep me here and I don’t think pushing her away is going to work. I told her I only called her because I knew if I emailed her, she would call me. I really needed to talk to her or someone, well someone that i trusted. Right now she is the only person I do trust. I can’t risk telling someone else my dark thoughts. They will freak out and things will be bad.

I am falling asleep so will end here.