Tag: cauda equina syndrome

Ocean 2

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, gender dysphoria, mood disorders, transgender

Ocean

This is a new song by Lady Antebellum called Ocean. It is such a good song. I cannot wait for their new album to be out as I know it is going to be kickass as every single that has come out has been superb. I love this group so much and I am SOO happy they got back together.

I saw the uro. The cath came out. She wanted me to find some new catheters but I didn’t like the selection the nurse brought in so I will stick with what I got. I probably could do with a longer one but as long as this one is doing the job, that is all I care about. After the appointment I was so drained. I went to Whole Foods for some Indian but they didn’t have any. So I just had some Chinese food that they had. The rice was good. I also had some shredded beef that was amazing. It wasn’t part of the Chinese selection but in the Spanish section. I love that they have different varieties of food to choose from. Now I am back on a timer/schedule for my bladder. The uro wanted to know what the neurosurgeon had said and I told her he thinks I might have a tethered spinal cord and I think surgery is going to happen. She said she would redo the urodynamic testing two months later to see if there have been any changes made to stop progression of the bladder problems. I told her that he wanted a family member and she said that seems to indicate he is thinking surgery. I agreed with her. I feel so screwed. I really didn’t want to have surgery next year on my back but seems like it is going to happen.

My mother and baby sister is sick. Hope I don’t get what they got because there are some nasty viruses out there. My middle sister was the first to get sick and I think she spread it. She will deny it though. I got the flu shot so hopefully whatever my sister and mother have, it isn’t that. I know my mother did not get a flu shot.

I think I am recovered from the horrible depression that has plagued me for most of this year. I don’t feel like that black cloud is holding me so tight anymore. I am not saying that it isn’t there. It is. I just don’t feel its presence as strong as I did. I am back to my baseline depression, which I guess is a good thing. I didn’t think I was ever going to feel like this again.

I forgot to weigh myself this morning. I did when I came home and I am 3 pounds less than I was the last time I weighed myself. I had gained like 4 pounds now lost 3. I will check it tomorrow but I don’t think it will be a big difference. I knew I had lost some weight because my PJs were starting to get loose and I have an elastic waistband! I might be a size smaller. I had just bought a bunch of new PJs in size XL. I do not want to buy new ones. They can slide off me, I don’t care. I ate today for the first time in what feels like days. I wasn’t hungry but I just made myself eat something. I still have no appetite. I don’t know if it is because of the depression or meds or what. With the nortriptyline and gabapentin, my appetite should be off the scale but it isn’t.

I love my uro who is always courteous and mindful about me being a FTM. She explained it perfectly to a fellow nurse what my situation was. I am so glad the staff are always nice about it. I really lucked out. One of the trans women I follow on Twitter just posted as this is the decade she is going to be her to her full being. It will be similar for me. I am out and on HRT. I am transitioning. If I have to have back surgery this year I hope I can also have top surgery. My only fear would be spread of CRPS. I don’t know what it will be like or if the surgeon knows about CRPS and removing the breasts. I know that I cannot survive another year with these things on my chest. They are depressing me so much especially as they are getting hairy with the hormones. It is so distressing. Sets off the dysphoria so bad. I hate being in the wrong body.

Boxing day and other stuff

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

Boxing Day 2019 and other stuff

I went out with friends this afternoon. We had dinner and it was a really good time. My niece accidently kicked my bad foot twice and my foot reacted as if she hit it with a baseball bat. I saw stars and continue to see them.

The psychopharm sent me a couple of messages. I responded and said that I can give her a paper and a scale we can use to assess my suicidality. She is open to it. I am not sure how long she will do this for. I told her that my suicidality needs to be assessed from now on at every visit. She said in one of the messages she would be curious on days that I am not so suicidal how it is. My level of suicidality has been waxing and waning. I am just getting stressed out with my mother as she doesn’t like me fucking sleeping during the day. She doesn’t get that I don’t sleep at night no matter how many time I fucking tell her. I had her on block for a while and I think I might do it again as I don’t want to be disturbed with her while I am trying to sleep. She wants me to “open up” to her. I told her that isn’t happening so forget about it. She got mad. I don’t care.

feeling low. I am dehydrated as there is little urine in my bag. I thought I drank enough (bottle and a half of gatorade) but I guess not. The catheter is really bothering me today. I see uro Tues and hope this comes out. The uro wants me to think about a supra pubic catheter. I don’t want to have surgery as I am scared CRPS might spread. I am having horrible bladder pains so I do hope the catheter comes out on Tues. I just can’t deal with it anymore. It is just making me more depressed. Found out my psych diagnosis has changed. I no longer have bipolar disorder. I have recurrent major depression with psychotic features. That fits me better. Though the psychopharm thinks I have persistent depressive disorder (formerly known as dysthymia). Either works for me as I am fucking depressed!!

30 December 2019

I never finished this blog so kept it and decided to just put in today’s date. I start off wanting to say things and then I just lose interest and lose my train of thought. I can’t send my therapist links to my blog anymore because anyone who accesses my record can have access to it and I don’t want that to happen. When I go back to texting her, I will. I don’t know when that will be as she said right now I am “unstable”.

I haven’t really eaten since Boxing Day. I think I just been living off of Ensure. I just have no appetite at all. I had two Ensure today at different times. I really don’t want to leave my room for anything if I don’t have to. I have the larger bag hooked up so I don’t have to empty it often and can sleep without worrying. I see the uro tomorrow and I was worried I wouldn’t as there was a problem with scheduling. They wanted me to come in earlier but I can’t because I have a delivery. I got the times mixed up so I can be there by noon if the delivery is here by 10. I plan on taking a shower when I get up so I can be as clean as possible. I feel dirty but my damn ankle is hurting so much along with me having back spasms that I don’t want to shower right now. I’m not sure if I will be placed on an antibiotic once the catheter comes out just as a preventative. I hope to go back to my “new normal” of cathing a few times a day. I don’t know if I will be able to go on my own yet. Won’t know until the catheter is out but I am thinking not as I have had zero urges. I am going to ask the uro about the bladder pain. If it is from the catheter, fine but if it isn’t, something needs to be done about it.

Christmas 2019

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

Christmas 2019

Today started off rough as I got into an argument with my mother. She had called me wondering why I didn’t go down in the morning. I didn’t feel like it because I didn’t sleep well last night. I wanted coffee but it was almost time for dinner and I knew if I had some, my appetite wouldn’t be there. I was grumpy but made it downstairs. The food was good and I overate. I made out like a bandit with Starbucks gift cards.

I’ve been feeling really low all week. Monday my mood was better when I was in therapy. The therapist noticed. It didn’t last long as by evening I was depressed again and I have been down since. I think I am getting a cold as my nose is running tonight. I think the virus I have been avoiding the past two weeks has caught up to me.

Therapist wants me to start a DBT group. I told her I would try but no guarantees that this will be completed. I am juggling so many medical appointments as it is and throw in psych and physical therapy, my schedule is suddenly full. I am not sure I will have more than 3 appointments for PT as the concussion is getting better finally. I see the concussion doc the beginning of the new year. The first full week in Jan I have four appointments. Such a busy week and I am not looking forward to it. I still have this behavioral med psychologist I am seeing. I see him next week. I don’t see the point in seeing him but the therapist really stressed meeting with him so I will.

Uro called me yesterday. I have an appointment next week with my doc about this fricken catheter. I am sort of getting used to it but now sediment is starting to build up in it. I just hope no bacteria grows. I really don’t want an infection again. I have a love/hate relationship right now with the damn thing. The pain in the ass is having to empty the bag. The larger bag is not a huge deal but the smaller one I have to really watch how much I am drinking when I am out. Tomorrow I am to meet up with some friends and go out for dinner. I am nervous about it. Just hope it will be okay.

baking and the tireds

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

Baking and the tireds

I woke up around 9. I had energy but I didn’t feel like getting up. I had to bake the zucchini bread, which I did do eventually. My mother made my custard pie for my birthday tomorrow. She is having a party for me. Little does she know that it will be my coming out party. I am not hiding who I am anymore and if someone calls me my birthname or “she”, I am going to correct them. If I am meant to be here, I damn well am going to be who I am and not who I am not. I am a male and that is all. I try to be a good, kind man.

After I baked, I got really tired. I went up to my room to relax a bit. I had to be careful with the damn catheter. I had tied the bag to my leg so I wouldn’t be touching it while I baked. I seriously am just so depressed that this is my life now. I will always have to either have a cath placed or do the cathing to excrete urine because I can no longer do it on my own. And there is no reason for it. There is some kind of nerve damage going on but nothing to indicate where it is coming from. I am so frustrated.

My pcp sent me a message this morning. I had replied to his from Friday, I think. I was upset that he didn’t want to treat my pain. He said that with all the medication changes the other docs and the psychopharm are doing, he doesn’t want to add to it. I understood where he was coming from after I had a good sleep and was clearheaded. The concussion is not helping me stay focused on things. I have been having memory problems and my rationale has not been in good judgment. I wrote back to him a few things to keep him up to speed. I don’t see him again till Feb. That is a long way from now. I also see the neurosurgeon a day before his appointment.

My therapist had wanted me to think about going to a DBT (dialectical behavior therapy) group. I thought about it but I also have a lot of questions about it. I wrote them down the other day. I hope that I remember the notebook I wrote it in because I also want her to write the stuff she was telling me to do to express my feelings in the moment when I didn’t have words for them. I talked to a friend about going to this group as physically it can be taxing. She said to give it a go and see how it fits. If it doesn’t then I can always leave it. I wonder if my therapist will think so. I have to be honest with her that this might not be for me as I haven’t had much success with outpatient group therapy.

I am absolutely dreading my birthday party tomorrow. I know there is going to be a lot of pronouns and it is just going to stress me the fuck out. I guess I can talk to my therapist about it. Might help me to unload the fears I have about stepping up this far with my family. I know they aren’t going to be accepting. Some will, some won’t. But if I have to be here, why not let me be the man I am?