Category: cauda equina syndrome

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.

You are king so go into the light…

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, suicide

You are king so go into the light…

These are the words the voices have been telling me since Tues. I haven’t had commanding voices that were severe until tonight. I contacted a couple of friends and they helped me to get through until the medication kicked in. It has been a week that the voices started. This never bodes well. I know it is because of the stress of the death of my aunt and going to the wake and funeral. My family is very loving so it wasn’t like I was awkward or anything. I just didn’t want to say goodbye to my aunt. It hurts so bad having her gone. But she has been gone longer than her physical body ceased to exist. Parkinson’s dementia made her into a shell of a person that just became silent and I think that was when we really lost her. I feel so bad for my cousins who watched her deteriorate. It must have been so painful and I really hate that this disease not only affected my aunt, but her son and his family.

I seem to have caught the family crud that has been making its rounds to all the family members. I am congested. I took a mega dose of vitamin D and will take another tomorrow to ward off the virus. I had my flu shot so I hope I don’t get a strain that is not in the vaccine. I honestly haven’t been really sick since 2008 when I got double pneumonia. God I was ill for a month and took forever to get my strength back.

Beginning of Dec I have a lot of appointments. I have an appointment with the psychiatrist that was assigned to me when my psych left. If the NP does not give me my Ativan, the way I take it and a 30 day supply, I will go back to him. I am tired of this “discussion” where it is only her points she wants me to see not mine. And I don’t think it is a good idea to mess up someone’s med regimen because of long-term effects. I just cannot tolerate this. I see the NP Monday and I will calmly explain that I understand her concerns but I do not care about the effects.

I hadn’t peed in six hours so I cathed and as I was doing so, it was a long void. I was trying so hard not to clamp off the catheter but a spasm occurred and urine flow stopped. Now I have to try again so I don’t wake up before 6 am. I am going to try in about a half hour or when I am finished with this blog, whichever comes first. I really hate that this is my life now. That I will be having to catharize myself forever now or end up in the emergency room because I don’t have the urge to pee. I feel so humiliated. Just increases the suicidality. I found out today at the OT appt that this is nerve damage. I thought it might be due to medication but she said not according to the urodynamic study. I feel really sad about this. It’s just another nail in my coffin. I can’t take my back constantly being broken down and worrying about facing surgery all the time.

Monday I am supposed to talk with a behavioral med psychologist. I hope it isn’t because my “team” told him I was not compliant with my care, meaning not taking my medication or skipping appointments, etc. I go to mostly all of my appointments except if there is good reason not to, like feeling sick or being in pain. I just am having a major problem with the urine thing because it just screams at me that I am disabled where before I knew I was but I really didn’t want to face it. Now it is staring at me in the face and I can’t deal. The depression is making me feel like I would be better off dead. And now the voices I should just take a bottle of pills so I can be king to go into the light. I have already decided I am going to end my life before my next birthday. It is just a matter of time and a few weeks away. I just hope I don’t end up back in the hospital when I see the NP next week. I don’t know if she will think going into the hospital will be a good idea and I hope she doesn’t because it is NOT a good idea, especially before a holiday. Just really bad to go into the hospital around a holiday.

It’s 5 AM

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, suicide

It’s 5 am

I woke up an hour ago to pee and couldn’t go back to sleep. So I am writing hoping that does the trick. I had posted in my support group for cauda equina about me having to bring my catheter bag with me to the wake and funeral. I really don’t want to but if I need to go, well, I need to go. I can sometimes go on my own but other times, it is a hit or miss, with a miss being I need to cath. I am so nervous about this. I think I am going to call my cousin later this today to let her know just to ease my mind a bit, though her knowing what the bag is for might cause things to be uncomfortable for all. I don’t know. I didn’t think of that scenario. Fucking stupid bladder!

I did what I wanted to do yesterday. I ended up showering Friday night because I just couldn’t take my hair being dirty anymore. Then yesterday when the pharmacy was open, I went and got my meds. I also got some of my favorite cold brew coffee drinks. They were on sale so I didn’t mind spending money on them but forgot to buy the M&Ms peanut candy. Will have to go back today. I want to go to the Chess Club today. I set my alarm and will be taking my morning meds later than I usually take them in case I am able to get back to sleep. I just checked the bus schedule and, oof, the bus doesn’t run frequently on Sundays. I thought I would be able to leave around 1230 as the club starts at 1300. The bus is at 1155 so I will be a half hour early. Which is fine as I want to check out the coffee shop the club hangs out at. I will see if I can borrow ten bucks from my mother as I don’t have much cash on me. Wish I remembered about the club before buying the coffee stuff at the pharmacy. Oh well.

My foot just exploded in pain for whatever reason. There is a storm brewing in the area so that maybe why. I am not sure if it is today or tomorrow. I just know I am hurting now. I don’t think I will be able to go back to sleep now. The psychosis is still there so much to my reluctance, I am going up to 6 mg of Invega to try and stop the psychosis from getting worse. I just got to worry about side effects and cognitive issues as it might interfere with my writing more. It happened when I was in college. God I hated it because I would read the same paragraph at least three times still not knowing what the hell I read. Oddly, I was taking a neuroscience psychology class at the time. When I told the professor I had to withdraw she understood. I was thankful for that.

I guess my dream of coming off the Invega is not going to happen. Seems every time I feel ready enough to stop taking it, shit like this happens. I know it is always a risk when my mood is getting bad or is already bad. Sometimes the psychosis is not congruent with my mood so there is that. I did check my “issues” and seems the NP took off BPD and just left the Persistent Depressive Disorder, which used to be known as Dysthymia. That does fit into what I have better than recurrent major depression. Either way, I do have a depressive disorder and calling it whatever doesn’t change the fact I have it. My skies are always going to be gray no matter what it is called. I am just glad the BPD has been taken off my record. I have certain criteria but I don’t meet enough to have the disorder.

I am going to try and nap for a bit. I got five hours before I need to get ready. Hope to sleep for at least 4 hours. Wish me luck!

outside looking in

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, suicide

Outside looking in

Last week, I wasn’t feeling well. Each day I was feeling more and more sluggish and sleepy than the day before. Monday I used the bathroom and noticed some swelling under my chin that was not there before. It felt really hard. I didn’t want to go back to see a doctor nor did I want to spend time in the ED again. I had finished the antibiotics for the urine infection I had so I am thinking there is no way I could have another one. I was wrong. I went to urgent care and sure enough, my salivary gland under my chin was infected. The PA (physician assistant) wasn’t sure if it was bacterial or viral so put me on antibiotics with a referral to an ENT. I was supposed to meet up with friends but I felt like shit and had to cancel. I went home after picking up my antibiotics and went to sleep.

Next day I was to see my TG doc. My mood really sucked that day. I just wanted to be in bed. I still felt like crap but I had to get my T shot and discuss the transition with my doc. It went okay. I had my shot and then I figure I would just go home and sleep. I couldn’t. Pain hit and I was again suicidal. I texted the therapist when I got home saying that I was struggling. We talked for a bit and she made sure I wasn’t going to act on my thoughts. I said I wouldn’t today. Wed morning she texted me asking how I was. I told her pretty much the same as last night. Wed was a really bad day. I was in such a rotten mood. Pain was hitting me because of the storm that was coming. I wanted to ended it that day but it was supposed to be raining. It wasn’t so I was pissed as I didn’t get up till after 12 to know this (room is dark as I have window with a darkening curtain). I didn’t do much that day. I just stayed in bed. That night, as is now becoming my usual, I woke up between 2 and 3 am to empty my bladder. My ankle was hurting so fricken bad. I sent off a text to the therapist that if the weather was formidable, I was going to end it either today or tomorrow. I was done. I had scheduled texted it so I could delete it if I wanted to before it sent. I woke up around 815 or so yesterday and was going through stuff. I was so fucking depressed but the wind was really howling and it sounded nasty out. I was on the fence on whether I would go through with it or not. The text was sent and I used the bathroom. I came upstairs and there was a missed call from some Boston number. They left a message and it was the therapist. We chatted and she wanted to send an ambulance for me. I had her talk to my niece and she disposed of the ginger I was going to use. I was then to see the therapist later.

I was really nervous as I didn’t want to go back to the hospital. I got some coffee and went on my way into Boston. We talked and things went well. She was open, really open, to what I was telling her and how I wanted to talk about being suicidal. She wanted me to come in Monday. I really didn’t want to but I was afraid to say no as she might say I would need to be in the hospital and I didn’t want that. We devised a way to convey to her when I am close to being suicidal again but not going to act on it within 24 hours. I don’t know if I will go through with this. I said I would but I am not sure I will in that moment. I wanted to go through with my plan today but I am just so damn exhausted. I was supposed to call ENT and all I did was call to make an appointment with the psychopharm, the new one I have that works with my pcp. The appointments were supposed to be 30 mins long but for some reason, I got booked an hour. I guess that is ok. I have the appointment on Wed. I am going to try and get out of therapy that day when I see the therapist on Monday.

I wasn’t sure I would be able to write about this today. I am still in a really bad place and the anhedonia is really bad. I have no joy doing anything anymore. Writing has become so hard for me. I haven’t written in my night journal in so long. I think I last wrote in it the week I got discharged from the hospital. I am overwhelmed with everything. This new stuff with my bladder hasn’t been easy as it is interfering with my sleep. I wake up in the middle of the night and it just throws me off. Sometimes I can go back to sleep but it takes a while to get there. I am still losing weight because I am not eating. Yesterday all I had was a pumpkin scone. I was able to make a chicken sandwich today. It has been the only thing I have eaten. I just have no appetite the past few weeks. This whole new change with having to cath has really made me feel more depressed than I have ever felt. I also don’t have much support other than with my support group. I finally was able to have peace with my middle sister as she was freaking out about the disposal of the caths. I can’t deal with anything else medically going wrong this year and the stupid salivary gland thing was my last straw. I don’t want to see another new specialist this year. I know I need to because the swelling is still there despite being on antibiotics. I do feel better physically but not 100%. It could just be that I have another urine infection. I haven’t figured out how to get a urine specimen while cathing as I need a third hand. I bought some sterile bowls. I hope then I can just collect the urine there and then pour it into a cup.

I shaved and showered today, though not my face. I have been growing whiskers on my face so I let it go and then when I can’t stand it anymore, I shave it off. I haven’t been great at showering this week. I seem to go once a week, if that. I just don’t have the energy to do it. It exhausts me trying to wash up and dry off, especially with whatever is going on. The TG doc did a blood count so my white counts are within norms. I still feel yucky despite this. I need to change my sheets this weekend. If I don’t wake up at 3 am again, I might do it tomorrow. It needs to get done.