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.

Night of horrible, excruciating, pain #CRPS

These are my posts I have made on social media tonight describing the infuriating pain of complex regional pain syndrome or CRPS (formerly known as RSD). One of the paragraphs is to my wonderful, understanding psychiatrist which explains the vein popping of a flare. I don’t get the normal discoloration of CRPS. I get the swelling and pain and allodynia. This is my 2nd night of not sleeping. I’ve maxed out on meds except one, ativan which I shall take shortly. Hopefully it relaxes me enough that I can lay down and sleep. I really hate nights like this but a storm is coming so will be hurting all weekend. Barometric pressure has been so up and down, I can’t keep track of it anymore. It is painful when it like this. Not only do I flare but my joints stiffen and spine aches from arthritis. No one understands the battle so I try and be as descriptive as possible so some understanding can be understood.

Was just sitting in my bed leaning back on my headboard as ankle bone pain course through every bone in my ankle. Then all of a sudden went down through all my foot bones and I started laughing. This has never happened before. One or the other but never both and I am so deliriously tired I don’t care and so I am laughing because of the pain. I’ve used more pain med this month so I got to ration what I have left. Hahahaha oh lordy. Gonna be a fun night and a storm is coming. Wonder what levels of pain that will bring??

Fucking pain. Right where it feels like a knife gutting me up my foot, veins are popping up in a group. Foot still being crushed by unknown entity. Bones hurting severely. & it is midnight. 1200 mg gaba taken. Another hour maybe a BT med. After that, who knows…

haha CRPS is driving me crazy tonight. Every bone hurt in ankle and foot. Then I have a stabbing, gutting feeling where my veins are all grouped together popping like crazy. All blue from being together. Fun fucking syndrome nothing is working. Just taking the rest of the bottle of gaba and call it a night.

Losing the battle with pain. Feel like I want to pass out and pain laughs, and goes up more or hits another area of foot or ankle or both. Nuts. Suicidal ankle pain has started. Fuck. No sleep tonight after no sleep last night. Fuck.
Pain is off its kilter tonight. 2nd night in a row. Nothing is working. Haven’t taken 2nd dose of ativan yet only because I’ve taken high doses of gabapentin. Foot is being crushed. Malleolus is being hammered. And the suicidal ankle pain has started. Veins have converged so I now have a blue tint to my skin because they are popping up. You can see every vein in my foot as to how flared it is. Haha next time i need blood drawn they can use my foot. Haha ouch.

New Year 2019

I may throw in some goals but I really don’t expect them to come to fruition. I’ve been having a hard time sleeping past few nights. Pain has been making sleeping at night impossible. So I sleep during the day to wake up at night to stay up all night. Fun cycle.

Last night I was trying to sleep. I would slightly doze and then wake up in pain, either my foot or ankle or hip. 3 am my hip was hurting because my body was one way and it wanted to lay flat rather than on my side. Had to use a heating pad which needs replacing because it is worn out. It doesn’t get hot like it did only on high setting. So I had this on my hip. And waited for pain to calm down. Then put of the fucking blue, my foot/ankle explode and I am instantly suicidal. Like I want to kill myself right this second. I didn’t know how but as I lay there immobile, I thought of ways. And I swear if I could have moved and acted at that moment, I would have. I was so pissed off. I was a lot of things i don’t remember now nearly 24 hours later. I took an ativan when these thoughts and impulses passed and I could move my hip without screaming. I think I might have taken another pain med too because I was in pain. Around 6, I took 1 neurontin hoping for an hours sleep. It never came. My brain was just fantasizing all these things I had to do today and just wanted to say fuck it and sleep. Did I do that? No.

Around 1030 I got up to start the day. I had to cook 6 pounds of chicken wings for my sister’s party. I had two glasses of coffee before I started. I had to cut the chicken, wash, then cook it. It was falling off the bone when it was done and it was way too early for people to come in. So it just sat on my sister’s counter because my mother had to use our oven for her stuff.

It was a good party. I had two glasses of spiked eggnog. Hoping that would dull the physical pain. Nope. I had stuff to eat. Talked with my cousins. The pain started to get worse. I could barely walk. Noises were affecting me severely. Like I couldn’t handle the loud talk of anyone or the screaming of the two babies or my cousin playing something on his phone. It was just making pain worse. I left. I said happy new year good bye. I got upstairs and didn’t know if I was going to make it. I thought the eggnog was going to come up. I took some zofran. I was late with my meds so took them. I could not lie down. It cold in my room and my foot was so swollen my slipper made an indentation mark. And it was ice cold. Turn on broken heating pad! Luckily it never got painfully cold but did get painfully hot. I am still trying to sleep and failing. I should be tired because I technically have been awake since 30 Dec 7pm! I am not fucking tired. I should be. And after this, I am shutting off the lights and trying for sleep. I realized I probably been having problems because I turned up the heat a degree. Bad choice. I need cold. I should have known when I was sleeping with just my sheet on it was too hot in my room.

I don’t have any 2019 goals like I said. I wanted to end my life 24 hours ago and it is still fresh. I emailed my psych but she is out of office until Wed so probably not going to get a response. I don’t need the hospital. I really just need to stop having flares or have meds to control flares. And then longer I don’t and the longer they last, I am going to be a suicidal maniac. I am hoping it was just the stress of the holidays but I got huge financial worries this month. I got to pay for my meds which I knew but still impulsively bought shit off Amazon. I won’t know what anything costs until later today, I hope. I still won’t know if my therapist is a provider until I see him Wed. And then I will probably need to decrease our sessions because I can’t pay for them. Fun pit in my stomach right now. And then I worry my pain meds won’t get covered or T. We’ll see. I need a refill sometime this month. But if it is really expensive, I don’t know if I can afford it.

So more stress = more pain. Lovely cycle.