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.

Trans issues 27.7.19

I can’t wait for top surgery. Things on chest are giving me such a hard time. I feel so ugly and humiliated. This isn’t me when I see them.

Kind of worried with the CRPS on left side. That is the side my left ankle is affected. The way they described how they cut the nerve to the nipple makes me nervous. I could lose feeling but that isn’t a major concern for me. I just want the fucking things off!! The right one might be more of a problem as it is bigger. Swear I have an orange on left and a small watermelon on right. And fuckers are heavy. But it might be that I just hate them so damn much. Worst part is they have become hairy which really bothers me. Becoming a man is so hard. Makes you feel really fucked because you aren’t congruent with how you feel.

The major thing is getting these things off. I would tomorrow if I could but I am being “selfish” waiting for the damn construction of the house to start and finish. I thought it would at least be started but it hasn’t. I haven’t asked my sister for fear of another argument. Been doing small stuff in my room as it is all I can handle.

Yesterday just putting groceries away flared my back up. It really scared me as I couldn’t touch my back without it hurting. I haven’t had that bad of pain since getting cauda equina syndrome x2. I have no red flag symptoms but I didn’t last time. I lost function of my bladder today. Things with it have been messed up since the middle of May. I moved to sit up and reached for my laptop which wasn’t too far from my grasp when urine squirted out. Luckily it wasn’t too much, but freaked me out. That was how I got CES (cauda equina syndrome) the second time. I had severe back pain and then started leaking more than I usually do. The disc was a different level than the first. And according to the surgeon it was huge. He had no idea how I was still walking. Been having intrusive memories most of the night and right now as I am describing it. I’ve never really talked about how I felt about it. I knew what I had and just focused on getting better, making sure I didn’t do what I did the first time, which was basically not having a clue what to do or who to see. I didn’t go to Spaulding, which is a huge rehab hospital because I’ve dealt with their lab and just thought all the people there didn’t know what they were doing. I was wrong and I am glad I was as i got a terrific PT now for my CRPS (complex regional pain syndrome) stuff.

I hope doing all the things I’ve been doing doesn’t cause me to blow a disc that is already herniated. I have herniated discs from levels L2-S1, worse at L5-S1 and again at L2-3 where I had CES x2. My first diagnosis was at level L4-L5. I fear if I have surgery again, I might need a fusion and I’ve heard bad stories about them. No one I know has found relief from them. And the stuff I read was fusions were only to be done on the neck, not the lower vertebrae. That is why I never want to have it done. I’d rather be in pain, but if other stuff is going on like loss of bowel/bladder, weakness in lower extremity, numbness from anywhere waist down (including saddle area and sex organs), then I will consider it. But only if I have a capable surgeon one who has done them a lot of times and have had success with them. I don’t want a neurosurgeon who only does the brain or pituitary gland. The whole thing scares me.

When I was able to see my therapist again (the 16yr one), she kept on telling me I went through a trauma. I stay away from that fucking word so much. I denied it tooth and nail until I started having PTSD symptoms. To this day I cannot go near the 3rd floor of the hospital where I worked. That is where the operating rooms were. I always wanted to see them but not as a patient!

I sent my psych an email about the top surgery and how I felt about it. She will sign me off on it but I really want to have a discussion with her before she does, just to make sure I am ready and she knows I am ready. It is a huge deal and I’ve gone back and forth with it in my mind. From i am attached and what will it mean to not have them there to seeing a man’s chest and saying I want that. I want to be flat and not have these things. I tell you, when they started developing, it threw me for a fucking loop. I thought getting my menses was bad. Nope. Having things grow was not what I wanted. Then to have a mother molest you because of “concern” more than once because one was bigger than the other and sending me to see a cosmetic surgeon when I was 13, fucked with me so fucking bad. I was so embarrassed this male doctor was talking to my mother about it but it would be when I was older. I nearly wanted to fucking die on the spot. I didn’t want them to be the same, I wanted them fucking gone!! I had already started hating my mother since I was 10. This just added to it more. Makes me feel so ashamed I have them and aside from cutting them off, there is nothing else I can do. Makes me feel really depressed, like I am in this pit I can never get out of.

But none of this matters if my CRPS pain isn’t controlled better. I have a date planned to end it. I am trying so hard not to think about it as I want to see my psych again. At the same time, while the cat’s away, the mice will play keeps running through my mind.