Life worth living, the book
I have been reading Marsha Linehan’s memoir, Building a life worth living. Today I learned something that is spot on with how I am. I have what is known as “apparent competence”. It is when you basically show that you are functioning but inside you are dying from pain. I love this term and I highlighted it. I think I am going to learn from this book what I haven’t been able to in others and that is to know myself better. Dr. Linehan’s life and mine is very different but we suffered the same kind of pain that made us want to end our life. I am still thinking of ending my life while she has moved on. I just can’t seem to do that. I think if I didn’t have chronic physical pain, I might be able to live. But with it, I don’t think I have a chance.
I had a zoom call with a dear friend. She noticed my beard and commented on it. She loves the transformation that I am going through and it made me feel good as she knew me before I started my transition and came out as trans. She has been so supportive and I love her for that. Not too many close friends are as supportive as she is. Most don’t understand and won’t try to because they are stuck in their ways, the black and white thinking.
I went out today. I had to go to the pharmacy and pick up my meds. The damn pharmacist was an idiot as he said he couldn’t fill it then when I told him it was a 28 day, he said he could. I had to fill it today or I wouldn’t have meds for this evening and going to Tues would be terrible. I hate that I have these restrictions on my pain meds. It really sucks to be in this kind of a bind. Back and ankle have been switching off hurting today so I was glad I went out for a bit to stretch my legs. I have been in bed since then. I just can’t bear the pain because my back hurts so much. The muscle relaxants aren’t working as well as they used to. I don’t know if I have developed a tolerance to it or what. Just sucks because the cramps are so bad I can hardly stand up more than 10 minutes.
I have been trying to keep my fluid intake up because it is kind of warm these days. It has been hard because I haven’t had too much of a thirst. My bladder function is dependent on the fluid intake so I need to drink in order to go. Otherwise, I have to cath and I would prefer not to do that. I had to last night before bed because it was more than 5 hours and I wasn’t getting any urge to go despite drinking a lot. It is a catch 22 with the bladder. I can drink a lot but not have an urge or drink the same amount and get an urge. I have no idea what causes what and when. It drives me crazy.
I need to cut my fingernails. It is the one self-care thing that I absolutely loathe. I wish they didn’t grow so damn fast. Seems like I got to cut them every damn week. But I like when my nails are short. That is the only good thing about doing the deed.
About goals and feeling agitated
So I got some things done. I got my recycles in the bin. I started another bag. I showered and shaved. I did a pretty good job though I missed a spot here and there. I touched up. I shaved the sides and back of my head. It feels good to feel the baldness. It takes some work and my ankle did not like me afterwards that is for sure.
I got into a fight with my sister. She is just being ridiculous and I think I am going to stipulate that I am not going to talk to her until she gets some help. She has more issues than I do. But her germ phobia has gotten out of control. I seriously want to get her toilet seat covers because she complains every single day about something about the toilet. I don’t understand the obsession when it is your own family members. We share the same germs so I don’t get it. Someone else I can see but family? Come on. Now I am fearful of using the bathroom not only because of cathing but now if I should forget to wipe the damn toilet down after I use it. Fuck. Who the hell does that in their own home?? Fucking ridiculous!! I don’t need this stress. It is almost getting to the point where I am thinking of going somewhere else. I can’t be under this much stress just for living at home. No one should have to walk on eggshells where they live for whatever reason. Just talking about it is giving me anxiety.
I got therapy tomorrow. I cancelled today’s appointment because I just didn’t feel like going into Boston late afternoon. I would if it was my therapist but it’s not so cancel! I am not sure I will reschedule the appointment either. It is supposed to be the last one so I might just forego it.
I fucking screwed up my checking account. I spent too much (on bills) forgetting there were two being paid today so now I will be over drawn. I am screwed. I have no idea what the hell I am going to do as the fees are going to kill me. At least I got my meds and paid the money I owe to the mail order company. My doc will be calling in a script today and it won’t go through unless there is no balance.
I haven’t napped though I tried because I got a migraine around 1500. I tried to sleep but I got agitated. I took some perphenazine to try and calm down before I was bombarded with voices. They came anyways and then I was yelling with them about my sister which just made things so much worse. I know I should be in the hospital but because of my medical issues I just can’t. I am too afraid my needs won’t be met or the orders will be wrong so I will be fucked. I’ve had it happen too many times now and I get annoyed and frustrated and then want to leave but can’t because my safety is an issue or the team doesn’t feel like I am ready to leave. Then I will have to deal with the after math that my family will think it is someone’s fault I am in the hospital. They don’t understand that I have serious mental illness. My mother just thinks I need to talk to her to be “fine”. Mind you she wouldn’t understand a thing I go through no matter how many times I tried to explain it. Fuck, she still thinks I am female and tonight I have been going through horrible dysphoria because of the things on my chest. Knowing I have to lose weight to get rid of them just makes me more depressed. You would think it would be a motivator but it doesn’t work that way with depression. If I didn’t have severe depression, I might be able to get motivated. Right now I am just planning on not eating as I don’t know how else to lose. It worked last year. Only problem is that my appetite is sort of back so it is hard not to eat when I am hungry. Hence why I had burritos at 2 am the other night. I ordered my groceries so I will be getting tortillas to make my breakfast burritos to store. I hope to make a lot. I just hope my mother has enough cheese. I know she has a lot of eggs. I might have to buy a dozen as I will be using a dozen. A friend said the secret is 2 eggs per burrito that you want to make. Which makes sense as when I make one, I use two eggs. But this is all for when I have surgery and I have food for when I don’t feel like making something.
My surgeon’s NP called me today to answer the questions that I had. She explained the surgery to me and that they won’t be removing a lot of bone or anything and I won’t need a transfusion. So I was happy about that. I told her I would need home care and she said I would have to talk to the nurse manager on my case when I am inpatient as they and my surgeon arrange that. It all depends on what I need and how I am after surgery. I keep praying that I walk in the hospital and am able to walk out even if it is with a walker. I haven’t decided if I am going to wear the afo or not the day of my surgery. I think I will be okay walking without it. I will have my sister bring my bag with me later that night so it doesn’t get lost. I just plan on having a few change of clothes and my toiletry bag. And catheters. The NP said the neuro floor is mostly private rooms so that is nice. I will know when I wake up if things went okay or not. Last time things were not okay and I knew right away something was wrong but I didn’t know what as I was out of it. I just worry my CRPS foot is going to go berserk for being laid up and manipulated. I hope I don’t wake up in a flare. That will be friggin awful.
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?
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.