Tag: disability

High levels of pain and new development

by Midnight Demon, posted in blogging, cauda equina syndrome, CES, Chronic pain, chronic physical pain, CRPS, depression, disability, medical, mental disorders, mental illness, mood disorders, physical pain, psychache, transgender

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.

feeling hurt and exhausted

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

Feeling hurt and exhausted

I’m going through a little (or maybe a lot) of gender dysphoria right now. Yesterday at the occupational therapy appointment, the therapist asked if I was going to have bottom surgery. Why the fuck do they need to know these things if this is NOT the reason I am seeing them!?!? If I was thinking or had it done, don’t you think it would be in my fucking record??? I am getting so pissed at handling this and then she said that there are a few doctors that work with women with spinal injuries. I went from being a male to a female in one fucking sentence. I am feeling so suicidal about this. I really don’t want to go back to the hospital where my care is at. It just hurts too much to be exposed this way.

This might sound sad but seeing as my therapist doesn’t want me to text her mundane things, I have decided to send those things to my alternative phone. This way I still get whatever I need to get out and there is no repercussions of whatever it is I say. I won’t be sharing this information with my therapist. There is no point in letting her know how pathetic I am.

Ankle/foot pain exploded about a half hour ago. Pain is a 14 right now and all I can think about is death. I emptied my bladder so I shouldn’t have to pee any time soon. I hope so anyway and as much as I want to drink right now because damn mouth is dry, I am not going to. I am sucking on lemonheads candy. Probably not a good idea it being right before bed but I don’t care. Sour taste can distract from pain so I am going to use it.

Next week I got appointments for the behavioral therapist, the NP psychopharm, my therapist, and the OT. Tues I see my therapist and then I won’t see her for two weeks. I get a break from her. She is out for the holiday and then she is leaving the country for a week. Totally messed up my plans. The day I see her when she is back is the day I wanted to end therapy or at least have a better idea about it. I am hoping to end things before my next birthday. I really don’t want to be a year older. It’s weird that I feel like I am twelve yet I also feel like I have the body of an 80 year old. Just feel like things would be better if I were dead.

I got an app thing where I can send texts now from my laptop. I’ve always wanted to be able to do that. I am such a geek.

You are king so go into the light…

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

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.

exhausting week

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

Exhausting week

Sunday night I realized I was an absolute idiot. Even though going out to play chess was probably good for my mental health, it was not good for my physical pain. I had a very rough night sleeping. I sent some texts to the therapist and I saw her that afternoon on Monday. I got dressed up because I didn’t want to get dressed twice but that ended up happening anyways as after therapy, I went into my PJs for a nap that never happened. I never showered. I just couldn’t be bothered. I was and still am so profoundly depressed. I thought things couldn’t get possibly worse and they did. Tues morning while at the church, I read one of the psalm books and it had the word “breaking” in it. Well, my brain just saw the “king” part and the voices started chanting “you are king, go into the light” over and over and over again. I sent a message to the NP. She wanted me up to 6 mg but it was going to take a few days to work. I told her I have no idea if I have an infection (I don’t) but the uro wanted to do a urine culture. The NP said she thought about ordering other lab stuff and putting me on another medication. She was going to be away the rest of the week but would monitor the message system if I should send a message. I did tonight as the voices are still saying “go into the light” though I have no idea what the fuck it means and it is on a fucking loop that is annoying the crap out of me. The meds are working as I feel more sedated and less agitated than I was. Other than the voices kicking up, the funeral and reception went well. I spent yesterday in bed. I didn’t do a damn thing. I was supposed to have therapy today but decided to cancel. I am glad because the occupational therapy appointment took so much energy from me and then I went grocery shopping which further taxed me. I am so wiped out it isn’t funny.

I was hoping my writing was going to be a little more frequent but some days I can’t write. I had so much emotion that I was just overloaded and couldn’t get my thoughts out but then, when you are actively psychotic, it is so damn hard to think. I got to ask my therapist how old she is, well at least if she is younger or older than I am. It is bugging the crap out of me. She freaked out when I told her the year I was born. I don’t understand why as she has my record in front of her. Makes no sense. The professionals I see are always shocked when they see my age. They will say, “oh, you’re 43? I thought you were 20 something.” Um, hello. I am not lying if you have my record there in front of you! I know I don’t look my age (don’t act it either, LOL) but come on.

As I was walking back to the area where the shuttles were to the train, I just crossed the street. Didn’t look and almost got hit by a passing car. I was like oh shit. It was a cop car too. I am just glad they didn’t give me a ticket because I didn’t cross at the crosswalk that was like 20 feet away from me. I still have this heaviness in my heart left by my aunt that passed. My cousin sent me a pic of my godfather last night. It was a pic that was taken at my cousin’s house way back when his kids were little. I miss him so much too. He has been gone for about 6 years or so now. I know he would have accepted me as trans. He was such a good guy with the kindest heart.