I am featured today on the PTSD and Beyond Podcast for PTSD awareness month. Here is the link
https://ptsdandbeyond.podbean.com/e/episode-69-share-my-story-with-g/
Category: disability
I’ve been down since July…
I’ve been down since July…
Been listening to the song Evermore by Taylor Swift. It is a song that I can relate to. It means so much to me. I am home alone and listening via my Bluetooth headset. I had two cups of coffee today and I am not feeling hungry at all despite just having the belVita biscuits with the coffee. I am trying to keep track of my bladder function by recording the times I void in an excel sheet on my phone. I just added cath to my med app so I know what time I am supposed to go by. I just drank a bunch of Gatorade so I am hoping to go soon. I am supposed to go every 4-6 hours, more if I drink a lot or have coffee. I have been sticking with the six hour mark rather than four because otherwise I would be cathing instead of voiding on my own. I just don’t get the urge till around really the 5 hour mark. This is all because of the nerve damage caused by the tethered cord that I had and needed surgery for a year ago.
It was a nice day yesterday. I drank my coffee on the back porch. I want to put a chair out there so I can go and sit on the porch and just be outside for a bit. I have to buy the chair. A plastic one so it can be easily washed and not have to worry about the weather spoiling it. Just will have to worry on windy days because it could get blown off the porch!
I had therapy Monday. It ended with me being annoyed. We were talking about my deconditioned body and she wants me to talk to my PT about what I can do about it. Basically it means more PT for me and she said I could have a year of it to regain my strength back. I think she is right. The idea of going back to PT doesn’t appeal to me but I know that I have to do it if I want the short of breath and tiredness to go away. Then I got depressed and we talked about that and how frustrated I am by the managing chronic pain book that I bought. As we ended she said not to work on it until our next session when we can do it together.
I need to shave and shower. I have PT this afternoon. I am not sure if I will be going because my bowels seem to be unpredictable right now. I might have a virtual appointment with her. I need to go out as it has been a week since I last left the house. I had my T shot today in my left nerve damaged thigh. I am kind of hurting but it isn’t too bad. My ankle is hurting me more than my thigh. Having the shot in my thigh always worries me. I need to walk it off and I will today when I go out for my appointment. It is going to be another nice day today, though cooler than it was yesterday.
Last night I was pretty depressed and suicidal. I don’t really know why. I just got overwhelmed with being sad and just wanted to die. I was listening to the song Exile by Taylor Swift. The lyrics were so powerful. I kept wondering why I am still alive. I want to be dead so bad yet the people around me keep me here and I resent them. I really wish I could live some where else so I can be away from my toxic family. I know being around my mother is not good for my mental health but I have no where else to go. I don’t earn enough money to pay rent somewhere. I can’t work. Just sucks and I will always have suicide as an option.
An idiot, I am
Pain got the best of me this morning. Early this morning I was ready to doze off finally after being up all night. Laid down and within 15 minutes, pain got worse. I had enough so I got the elixir out. I wasn’t sure how it was going to taste. I took a swig. It was peppery and I checked the ingredients to make sure it didn’t have pepper in it or my stomach was going to reject my attempt. I kept taking shots but nothing was happening. I waited an hour. Nothing. By now it was like 6 am. I maybe dozed off for an hour or two, not consecutively though. By 0700, I gave up. The stuff wasn’t causing a reaction. I was mad and pissed and a jumble of other emotions.
I texted my therapist at midnight saying I wasn’t going to see her tomorrow. She thought it was today so allowed me to cancel. Mood was all over the place. Then she texted saying she couldn’t see me because she was really sick. That was the last text I got from her. I sent her a few more but got nothing. I went about my day.
I went to see my friend at the Navy Yard. We chatted for a few before he had to go back to work. I then went off for my appt with OT. We discussed the caths and stuff related. I asked her what would be best in cathing in bed and she told me it might be easier but I could get too comfortable with it that it would be the only place I would. Right now I am just planning on doing it when my ankle is 12+ level pain so I don’t have to go downstairs. I got a urinal and she showed me an type of catheter with a bag from the same company that makes the ones I use. She is going to recommend them to my uro so she can order them for me. These will be so much easier as then I don’t have to worry too much about wetting the bed with an accidental miss. Throughout the conversation I was having trouble keeping it. Concussion symptoms were in high gear today. Memory was finicky at best and my thoughts were not always on point. I would forget mid-sentence what I was saying and then totally blank out completely. Didn’t help that I sleep deprived.
After the appt, I went grocery shopping. I wanted burgers and turkey bacon. 4 things and I wiped out when I got home. I wanted to nap but couldn’t. I asked my mother to make burgers. She did, almost using the two pounds of meat I bought. I told her not to use all of it because I wanted to make dirty gravy. Now I need to buy more meat, which means going out in the storm tomorrow. Fucking fuck. I am so pissed she just did what she wanted with my stuff.
The only side effect from my failed attempt is a sore throat. I haven’t officially told anyone. I feel more hopeless and useless now than i did before. I put in a call to the NP as the therapist wanted me to involve her in this. She (NP) never called me so not sure when or if she will. I texted the therapist about it. Still got no response so she must really be sick. I don’t know if she is going to figure out i duped her with appt days. I did ask saying if there was an opening to let me know. I cannot see her Thurs but will if i have to. I see the behavioral med psychologist then. I cannot see the therapist and him on the same day as insurance won’t allow it.
I really don’t want to let on I tried to end things today. I feel like I will get in trouble if I do or worse, get placed back in the hospital. I will know more tomorrow if the therapist is feeling better.
Wed morning I see the concussion specialist. I am being evaluated for a TBI, which is what a concussion is, a traumatic brain injury, though a mild one. I am having a lot of symptoms so hope they can help. I know I have been bad about screen time and resting my brain. It is so hard though doing absolutely nothing sitting in the dark. I wouldn’t mind if I was drugged out on something or maybe I just need an ativan to help me sleep while my brain recovers. I still am getting headaches and pain at the back of my head where I banged it. Short term memory is shot. I can’t remember things like i used to and i have to write stuff down. The OT suggested I have an alarm set to start being on a bladder schedule so i know when to pee. I think i am going to put it in my med app as i can order it for every 6 hours or so without disrupting the time schedule. Trick would be at night so i don’t wake up in the early morning hours just to empty my bladder. But if i should have to, i now have the urinal and obviously the caths to do it. The OT also gave me a few higher quality chux pads. That was really nice of her. Now I can order them through Amazon. I haven’t decided if I should get disposable ones or washable. The price is pretty much the same, except for washable you get 4, disposable I think is 50. If I get the washable, I won’t have to reorder them, which would be nice.
I am feeling pretty worthless about failing, again. I guess I am just not meant to die. And this bothers me so much.
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.
midnightdemons7 
You must be logged in to post a comment.