Tag: CRPS (formerly RSD)

Don’t call me daughter 6

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

Don’t call me daughter 6

Yesterday I was in the kitchen with my mother and I was in a mood. I wasn’t feeling so great and just wanted to do what I needed to and go back to my room. My mother was there and asked what was wrong. She wanted me to talk to her. Fuck that. She lost that right when she refused to call me son. From now on I will correct her when she is misgendering me. But I am not going to talk to her for any reason other than what goes on in the house. I am not going to talk to her like I did before about my ailments and doctor appointments. She is getting to be the egg donor and if that is what it takes to cut off feelings from her then so be it.

I’ve been having a hard time with the cramps. I don’t know if they are uterine or bladder related but as an experiment, I cathed and felt relief at first only to have severe pain afterwards.  I don’t know what to make of it and I have cathed since. Taking a double dose of Miralax was a bad idea. I had colon blow and woke up with crap in my pants. Luckily, I didn’t get any on the bed. I had to shower and what is worse my mother had to use the bathroom so I was so embarrassed. I need to time taking it right. Thing is it is so unpredictable when it works. It could be a few hours or could be a day. There is no time table to expect when to go.

I am still have cramps and being really down about it. I called my gyn to make an appointment for the exam. It is in May. I see the uro NP this week so I am going to tell her and ask for a urine culture to be done just to be sure I don’t have an infection that could be causing this. I really am not looking forward to surgery again but there is little choice I have. Once the offending organ is gone is should be apparent what is causing what. I doubled my bladder spasms pill yesterday to see if it would help and it did a little bit. Maybe this is bladder related. I won’t know until the uterus is gone. I got my bladder on a schedule again. I didn’t want to do it but I have gone past the six hours I am supposed to go. I can’t keep holding on to my urine for so long. It could be why I have spasms as well.

I wonder if my mother is ashamed of me and that is why she doesn’t want to call me son. It would make sense. I don’t get the sense she is proud of me. I just don’t understand why she can’t accept her child. This bothers me so much. When you bring it up to her, she is dismissive. Then I think about all the abuse she put me through and it just makes me so sad and angry. She used her trust as a mother to do her evil bidding of abusing and touching me when she had no right to touch or look. I get mad at my pediatrician who documented all these things and didn’t do a damn thing about it.

exhausted

by Midnight Demon, posted in blogging, chronic physical pain, COVID19, CRPS, depression, FTM, gender dysphoria, mood disorders, transgender

Exhausted

I’ve been listening to “tis the damn season” by Taylor Swift since noon time. Just a damn good song. I went to PT. It went well. I had to get some dry needling on my shoulder because it became hard as a rock. I need to put some heat on it later. We discussed Covid and she said there was a conditioning program that my PCP can refer me to so that I can get my strength back. I said I would get the referral when I got home.

After PT, I went to the square to get my ATM card to my name instead of my dead name. It took about a half hour. The weather got colder and there were snow flurries. I got a wrap at the grocery store so I would have something to eat for my dinner. It was a good turkey with brie and cranberry sauce. It is my favorite kind of wrap.

I am in my room and I am freezing. I just want to get under the covers and sleep. I am totally exhausted. My legs are killing me. Today is my niece’s birthday but I don’t think I am going to go to her party as it isn’t until 7 and I am really tired right now. I just told my sister I wasn’t going down for cake. I am too tired. I am having bladder cramps and they are really bad. I came close to having cath tonight because it had been more than 6 hours since I last voided. I am not in a good space right now. I feel like my body is failing me and I am so upset with the gender dysphoria of having cramps that feel like period cramps. I still don’t know if it is my uterus or bladder giving me these cramps. But it is going on three days now.

I bought some BZK wipes in case I do have to cath. Least I can wipe myself and not have to worry so much about getting an infection. I just put them in the bathroom. I feel like the cramps are my fault that I should have gone to the bathroom sooner or something but if anything the cramps should be going away now that my bladder is empty and it is not. I am so frustrated that I can’t tell if it is my uterus or not. I shouldn’t have a uterus to begin with for fucks sake. I really need to see the gyn so I can get a hysterectomy and be done with it. The dysphoria I am having with these stupid cramps is horrible. I really just want to die. I want to act on my thoughts. I won’t though for the sole reason this will pass, eventually. I am going to call the gyn tomorrow and see if I can schedule an appointment to see her for the female exam that I hate so much. I am overdue for the test and she needs to do a pre op exam. I am not looking forward to this exam at all. But I can’t put it off anymore. The cramping needs to stop.

showered and now wiped out

by Midnight Demon, posted in blogging, COVID19, CRPS, depression

Showered and now wiped out

I had some energy this morning so I made my coffee and had my biscuits that I have with it. I was thinking about what to do today and I needed a shower. It had been a week since I last had one. So after I had my breakfast, I got my clothes together and went to the bathroom. My moustache needed a trim so I did that and then took a shower. It was exhausting. My back cramped up at least three times. I had to sit. I felt so exhausted afterwards I just wanted to nap. I still am thinking of napping but I need to get to the bank because when they replaced my card,  they put the wrong name on my card. It is my deadname. I don’t understand how this happened but I need to physically go to the bank now to fix it or I won’t be able to have access to my funds.

I went to the pharmacy to pick up my meds. It was a good walk but I am exhausted after going. I had just enough energy for it after eating. My T shirt is really baggy on me. I must be a large now. My size 38 pants had plenty of room at the waist. I lost like 15 lbs. I am trying to feel good about this. I had a long discussion of this with my therapist yesterday. She said what my father said to me is abuse. I need to talk about it to get over it. He always called me fat and ugly all my life. I am not sure how to get over this. It is something I have struggled with for years and now that he is dead it is just harder because I still hear his voice.

I am struggling this year with his death. Memories of that day still linger. It is like a distant memory but I remember the details of that day as if it were yesterday. I remember at the wake I had my niece take a picture of him because that is how I wanted to remember him rather than the emancipated look at his death. I knew he was going to die that day soon as I walked into his room at the nursing home. We arranged to have him taken to his apartment and I was the one that rode the ambulance with him on the way there. His breathing changed after we hit a pothole and I told him he couldn’t die yet. Not until he was home. He lived for another two hours when we got to his house. My sisters and I were having something to eat when he passed. I had a mini panic attack as I couldn’t find the nurse’s number to call to tell her he died. She had just left an hour prior to his death. Funny how much I remember from that day.

I am feeling down today. I am not feeling suicidal just depressed. I was able to eat. I ordered two filet o fish but only had half of the second one. I am feeling pretty full. I still want to make bacon that I bought. I just hate cleaning up after bacon. So messy. I had bought the pre cooked kind but it didn’t come with my order as it was out of stock. I am debating taking a nap. I think I need one. I haven’t been keeping tabs on my bladder. If I have to go, I will go but I am not timing myself like I did before. If it happens to be a long while then I will just go to the toilet and see what happens. Usually I am able to go.

I’ve been down since July…

by Midnight Demon, posted in blogging, cauda equina syndrome, chronic physical pain, CRPS, depression, disability

I’ve been down since July…

Been listening to the song Evermore by Taylor Swift. It is a song that I can relate to. It means so much to me. I am home alone and listening via my Bluetooth headset. I had two cups of coffee today and I am not feeling hungry at all despite just having the belVita biscuits with the coffee. I am trying to keep track of my bladder function by recording the times I void in an excel sheet on my phone. I just added cath to my med app so I know what time I am supposed to go by. I just drank a bunch of Gatorade so I am hoping to go soon. I am supposed to go every 4-6 hours, more if I drink a lot or have coffee. I have been sticking with the six hour mark rather than four because otherwise I would be cathing instead of voiding on my own. I just don’t get the urge till around really the 5 hour mark. This is all because of the nerve damage caused by the tethered cord that I had and needed surgery for a year ago.

It was a nice day yesterday. I drank my coffee on the back porch. I want to put a chair out there so I can go and sit on the porch and just be outside for a bit. I have to buy the chair. A plastic one so it can be easily washed and not have to worry about the weather spoiling it. Just will have to worry on windy days because it could get blown off the porch!

I had therapy Monday. It ended with me being annoyed. We were talking about my deconditioned body and she wants me to talk to my PT about what I can do about it. Basically it means more PT for me and she said I could have a year of it to regain my strength back. I think she is right. The idea of going back to PT doesn’t appeal to me but I know that I have to do it if I want the short of breath and tiredness to go away. Then I got depressed and we talked about that and how frustrated I am by the managing chronic pain book that I bought. As we ended she said not to work on it until our next session when we can do it together.

I need to shave and shower. I have PT this afternoon. I am not sure if I will be going because my bowels seem to be unpredictable right now. I might have a virtual appointment with her. I need to go out as it has been a week since I last left the house. I had my T shot today in my left nerve damaged thigh. I am kind of hurting but it isn’t too bad. My ankle is hurting me more than my thigh. Having the shot in my thigh always worries me. I need to walk it off and I will today when I go out for my appointment. It is going to be another nice day today, though cooler than it was yesterday.

Last night I was pretty depressed and suicidal. I don’t really know why. I just got overwhelmed with being sad and just wanted to die. I was listening to the song Exile by Taylor Swift. The lyrics were so powerful. I kept wondering why I am still alive. I want to be dead so bad yet the people around me keep me here and I resent them. I really wish I could live some where else so I can be away from my toxic family. I know being around my mother is not good for my mental health but I have no where else to go. I don’t earn enough money to pay rent somewhere. I can’t work. Just sucks and I will always have suicide as an option.