Category: medical

High levels of pain and new development

by Midnight Demon, posted in blogging, cauda equina syndrome, CES, Chronic pain, chronic physical pain, CRPS, depression, disability, medical, mental disorders, mental illness, mood disorders, physical pain, psychache, transgender

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.

Night of horrible, excruciating, pain #CRPS

by Midnight Demon, posted in bipolar, Bipolar Disorder, Chronic pain, chronic physical pain, CRPS, depression, disability, medical, mood disorders, painsomnia

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.

Another blog by phone: doctors suck when they don’t know what is wrong

by Midnight Demon, posted in Bipolar Disorder, blogging, Chronic pain, chronic physical pain, CRPS, depression, disability, medical, mental illness, mood disorders, physical pain

Once again I am a ping pong ball between my psychiatrist and PCP. He doesn’t think my feeling crummy and fatigue has anything to do with my sodium levels even though I explained to the jerk that when I was 2 points lower I felt sick. Now I feel sicker because the damn sodium is lower! He has exhausted all medical tests to cause this so I am going with my fucking gut this is due to my mood stabilizer lowering my sodium levels causing this. So I am decreasing the dose by 300 mg. I see my psych tomorrow and I hope she won’t fight me on this and just repeat my tests in a week to see if there are changes.

The asshole wanted to discuss this AFTER my appt. No, not happening. Because you know what is after tomorrow? The weekend! Nothing will get fucking done until Monday and I am sick of feeling like crap so this is happening tonight. Fuck him. I want to see my therapist again without it being a big fucking ordeal. It is bad enough I get flares after I see him but to be totally wiped out the day after? No. I am just not letting this happen again. I waited 8 fucking years for the CRPS diagnosis. I am not waiting another week of back and forth to figure this out. I know it is the med. And if I am wrong, then I am wrong and we go from there. I am willing to be unstable to stop feeling like shit. It is my fucking life last I checked!

The pain program called me this morning. I had talked to them Tuesday saying I was sick and didn’t know when I was going to feel better. I guess they felt I already had too many cancellations so they discharged me. Thank god. I didn’t want to go anyway but was forced by the pain doc because I felt they wouldn’t prescribe my pain meds otherwise. I also went because my PT felt it was a good program but the program changed because they were not doing anything she said was available. I just had OT (occupational therapy) and physical therapy. I honestly felt the PT didn’t understand CRPS. I really didn’t. And like the PT I was seeing, this PT’s exercises caused flare ups. And it wasn’t the muscles that I was stretching but my damn foot because I had to exert pressure on. I won’t be going back. Ever.

Today I felt a little better but after I got my haircut, did some shopping, I was fatigued again. I felt like napping but it has been so hard to wake up. I hadn’t eaten anything all day except for 4 cookies with my coffee until my mother made dinner. I didn’t keep my fluids to 1L. Only because I haven’t had a shit in a week. I am so backed up it hurts. I took Miralax today and felt stuff moving but still nothing. Going to take some more fiber pills and hope for the best at this point. Just hope I don’t get colon blow.

Lots of things and crashing after

by Midnight Demon, posted in Bipolar Disorder, blogging, Chronic pain, chronic physical pain, CRPS, depression, medical, mood disorders, psychache, transgender

Lots of things and crashing after

I woke up around 5 for some reason that I don’t remember now. I think I was in pain as I remember taking a pain med. I was hoping this was not going to cause me to be in bed all day as I really wanted to change my sheets. I fell back to sleep and hoped for the best.

I woke up with my med alarm blaring. I felt okay. I definitely needed coffee. I was hungry. That was the first time in three weeks I woke feeling hungry. Maybe my sodium was back up. I still feel better but kind of sluggish. I went downstairs after stripping the bed and then used the bathroom. I made breakfast and coffee. My mother wanted a cup so I made her one as well. I found this transgender article and was totally confused by it because it is not how I felt. But I decided to leave it where it was so I could read it later. After I ate, I put the throw in the dryer and then the blanket in the washer. I just had the sheets to do.

I went back upstairs to find my sheets. Before I put them on, I duct taped the corners of the top of my mattress so the damn foam topper wouldn’t go anywhere. I hoped anyway. My back was giving me grief. I had taken a shower before I got upstairs. I had shaved, too. I was sweating by the time I wrestled with the sheets. I was trying to even out the top sheet I didn’t bother to tuck it in. Then I got the comforter and the pillowcase. I put the comforter on and the pillowcase on the pillow. I couldn’t find the extra pillow case for the pillow that goes between my knees. I said fuck it. My back was killing me, I was wiped out, I felt like I was going to pass out and I did. I slept for three fricken hours. I guess the sodium isn’t as high as it should be. I know it is getting there as I am kind of feeling better. The big test is that I am getting my groceries tomorrow. If I survive that without sleeping for the day, I guess I am doing better. If I sleep all day, then I am still fatigued from the low sodium.

I read this article https://www.nytimes.com/2018/11/24/opinion/sunday/vaginoplasty-transgender-medicine.html. And it was a MTF. I honestly have not come across too many trans that feel this way. I certainly have never felt this way but I am not going to have phalloplasty. It is a complex surgery and I just do not want to go through with it. I just want to be flat chested and grow a beard. The things raised in this article scare me because I don’t ever want my hormones to be in jeopardy. I know that losing my breasts has to be dealt with. I have thought about it so many times. I mean, I am sort of attached to them. I wish they never were formed so I didn’t feel that way but now that they are sort of shrinking slowly, I am glad. It was a huge part of my dysphoria to have breasts when I didn’t want them. I know eventually, I will have to have top surgery and getting a good surgeon is key because I have heard horror surgeries where the surgeon doesn’t care and just does a bad job. Granted this was just in the UK, but I am hoping to find one in the Boston area that is considerate and doesn’t cause nerve damage or anything. That is further down the road as I am not there yet. I don’t know if I can talk about this with my therapist or not. He doesn’t seem to know a lot about transgender and I am kind of pissed because on the website I found him at, said that he did. I am not sure if I will have to find another therapist to deal with the dysphoria or not.

This female is having doubts about getting surgery to have a vagina implanted. I don’t understand why she would go through something like that if it is going to cause her more emotional pain than what she is already in. And I still cannot believe a surgeon would do it when there are doubts. I am not saying my transition has made me bone fide happy, but it has relieved a lot of the tension I was feeling not going through the transition and having to wait so much from the LGBT clinic and then I met my doctor and she is all like when do you want to start. Like seriously, in one visit, I am on hormones. I understand the LGBT taking things slow and working things out but I have known the last ten fricken years, maybe more than that, that I am NOT a fucking female. I am a fucking male. I hate getting misgendered! It really drives me crazy and Microsoft doesn’t recognize misgendered. How fucking lovely.

I have my shot this week. I am excited because I get to do the selfies and post a little bit about changes. Honestly, other than thicker leg hair, there hasn’t been much since last week. I keep getting complimented on the facial changes but I don’t see them week to week. Sure from day 1 to now I do but I think if I lose weight, it will be more prominent. I think I have lost some weight since I haven’t been eating regularly with the whole sodium thing. I really have just been sleeping a heck of a lot.

I see my psychiatrist this week. I am glad because I miss seeing her. I hate these monthly meetings but she is always a page or email away if I really need her. I don’t know what they are going to do about my mood stabilizer. I see my pcp Wed to get my blood redrawn to check levels. Then go from there. I really hate that I have to taper my drug but I don’t know if it is just to taper to a lower dose or off the medication entirely. And I am starting to feel that woozy feeling again, which means I am going to crash soon. I am over a 1,000 words. So I guess that is good for the day. God I can’t wait till this is resolved!