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.

Just a ramble about chronic pain

Never thought I would ever be on so many meds for one illness. If it was for my mental illness that would be one thing. But for chronic pain there are like 4 or 5 plus patches and gels and ointments. I’m tired of taking them when flares hit. And there is nothing I can do but let the pain be a 20/10 and hope morning comes so the hell will be over. A family member once said you are on pain medicine, why are you still in pain? Because it is not the pain it was meant to be dealt with. Nerve pain is different than physical pain. Then you have the pain go away and another pops up in another place on your fucking foot or ankle. Chronic pain sucks and need different things to keep it in check and then there is nothing to keep it in check. It just is. That is what CRPS is. Complex regional pain syndrome. So I am off taking another pill that might work. And if it doesn’t or changes to something else, go through the list. So exhausting. This is why I constantly think of death. I have no strength left

Sadness over madness

There was yet another shooting in the US. A hospital in Chicago lost an ER doc because of her fiance. We don’t know details because he is dead. An officer and a pharmacy tech were also killed. I am so sad over this. Docs are mad continues to happen while those in government do nothing. is becoming an every day thing. Innocent people are losing their lives because someone decides to take a life with a gun. I honestly think the more this is broadcasted the worst it will be. People must be thinking it is “ok” to do this, everyone is. Makes me so mad and sad.

I had to cancel my therapy appt last minute because I was stuck at the hospital trying to give a urine sample. My bladder was retaining so damn fucking bad. I felt I had to go. I knew I had to go. I had drank more than 1000 mLs of fluid. I was full or close to it but no, I wasn’t overflowing so nothing was coming out. I tried everything. It was so noisy in the lab. Soon as I went to a quieter bathroom, I finally was able to pee. I then had to walk back to the lab to drop off the sample. There was no way I would be on time. I would have like 15 minutes with him and that would be it. I hate having to cancel. Stupid bladder.

When I walked back to the station to go home, my heel was killing me. I don’t think it is plantar fasciitis. I am starting to think the steps I take are to harsh on my heel. It is so inflamed right now. I bought some gel inserts to try. I don’t know what else to do. My feet are freezing so I am not about to put ice on. I probably should. But with the whole CRPS thing, I fear I am causing damage than helping it.

My blood tests came back. My sodium is still low but higher than it was. My pcp sent me a letter but didn’t tell me if I need to keep doing the restrictions or not. Ugh. Idiot. So I emailed him back. Hope to get an answer tomorrow. I see him next week so will probably recheck my values again.

I was so damn exhausted. I ate a sandwich and then I passed out. I have no idea how long. I woke up with a bladder yelling at me. It was ready to explode. I was so disoriented. It was around 6 I woke up so I don’t think I slept too long. I was not rested. I just wanted to take my meds and go to sleep. But i was so cold. It was freezing in my room. It is a little warmer now. It is raining again. We are supposed to have a snow rain mix tomorrow. That is going to be fun as i got to go see the pain program social worker. I am going to be blunt like i usually am. I only had one session and canceled 2. I really don’t care anymore. I am not feeling well. I emailed the PT and OT about why I couldn’t make it. I am not doing the stretches at all anymore because it flares up my foot. I had a million and one pains last night. It was awful. I hadn’t hurt that bad in a while. Then when I was just about to doze off, my body jerk, causing my left rib cage to hurt. It was such a bad night. I have no idea how I got up this morning at 9 to be out of the house by 1030. I didn’t shower as I knew that would tire me out. I wish I went to therapy. The whole thing makes me want to quit. Like why bother seeking help when I have so much wrong with me.

My thoughts are with those employees of that hospital in Chicago. What a terrible thing to happen. It happened at my workplace. A secretary shot a cardiologist one morning. I was glad I was off that day. Total mayhem with police and news crews. The news were camped out for like a week. So stupid. Hope they all can talk about it so it doesn’t cause PTSD for them. That is my theory anyway. But sometimes it doesn’t work and does more harm than good.

Hope my pain eases and I sleep. Night all.