In keeping with what I wrote yesterday about suicide and future planning, I tweeted this gem “As someone with lived experience, it is hard to let go of the familiar pain. It can be comforting sometimes because it is all we know. Changing or letting go of the pain can be painful in itself. It’s like letting go of a blankie. Hope this makes sense.”
I’ve had horrible insomnia today. I woke up at 1 am and could not go back to sleep. I was able to rest for about an hour. I’ve been keeping my bladder on a 3 hour schedule so I am not overfull and the urge to go isn’t horrible. It has made cathing easier. Because I was up so early, I decided to get my blood drawn for my Testosterone level. It just came back as 294 so I think my doc will be pleased. I have to tell her to give me two vials at a time because one vial just doesn’t work for the dose I need. I used my last refill today.
I made more appts with my PT today. She doesn’t have time next week to see me so I am off a week. I hope she dry needles me tomorrow in my back because today they were flaring big time. I was so miserable as my ankle has been in a flare for more than 24 hours now. I’ve been taking zanaflex around the clock to try and keep the spasms at bay but it might as well be a sugar pill I am taking for all the good it is doing.
I’ve been wicked thirsty today. It is hot and muggy. I had my Starbucks 4 shots espresso with soy milk. It was so good. That has been the only caffeine I have had today. I need to shower but I have no energy. I also need to brush my teeth. I meant to call the dentist today but I never did. Need to find out why I am having jaw pain.
I see a new neurologist tomorrow. I am kind of nervous. Hope she can help figure out the shin pain I’ve been having. Hope it isn’t a CRPS spread. That is what I am worried about as the area is swollen. Just hope she doesn’t want to change pain meds on me. I will be taking an Uber there as I don’t want to expend my energy too much as I have PT in the afternoon. Around noon I am getting my haircut. Got to keep the side and back buzzed at all times.
I am featured today on the PTSD and Beyond Podcast for PTSD awareness month. Here is the link
I managed to shower today but I was not able to trim my beard. My back has been bad today. I also been wicked tired. I still haven’t been sleeping through the night. I keep waking up because I have to use the bathroom. By the time I finish my business, I am awake and find it hard to get back to sleep, even with a dose of ativan on board. Then when I do go back to sleep, I feel sluggish and tired.
Today I had a wicked bad headache/migraine. Nothing has helped the headache and as tired as I am, I haven’t been able to sleep at all. I tried two times to take a nap and failed. I hope I can sleep tonight.
The thing that is driving me nuts is the urge to pee isn’t there throughout the day yet in the middle of the night it wakes me from a sound sleep. It is so frustrating because I have to use a timer or my med app to remind myself it has been x amount of hours and I need to cath. I’ve been doing that all day. I’m hoping that I can sleep at least six hours straight so I can function.
Tomorrow the physical therapist will be coming. I think I have like 2 more visits with her and then they will stop coming. I got to make sure I am up and awake. She called today to see if I am still MRSA precautions and I told her I was because I haven’t had the third test done to make sure I am negative. I got to talk to my pcp about this. I am hoping he can do the testing to make sure I am not MRSA anymore.
God I am so damn tired. I am going to stop here as I am drifting off. Until next time…
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.