A busy past few days
I have a busy week with a lot of appointments. I had two today, back to back. Tomorrow I see my pcp to discuss my cardiac markers and a BP med. I am hoping she listens to me and puts me back on labetalol rather than another med. But if she isn’t open to it, then I will go on what she suggests.
I saw my TG doc today. She had a fellow interview me first. Things went well. The fellow tried to get me a 5mL vial of T but the pharmacy just filled a 1mL vial. I have enough T to last me the next few injections. She also referred me to plastic surgery so I could get a top surgery consult started. I am glad because my pcp never responded to my request from last week. The fellow also answered my concern about whether T had caused the dislocation in my shoulder. It didn’t. I am glad. She did say that because I had removal of my ovaries, I have to be concerned about my bone health. But I am still young enough that I don’t have to go for a bone scan. The only bone scan I want to do is on my shin to see if the CRPS has spread to it. I have been having severe pain for no reason and it is worrying me.
After my TG appointment, I had the chronic pain group, which had already started. I was about fifteen minutes late but they accepted me anyways. We had a good chat about families not getting our disabilities and I told them how rough it was living with my sister who triggers my PTSD often. I also came out to them as transgender and they didn’t seem to care, which I was glad about. We also talked about how our families don’t believe our pain and disability. It was a good group. I did talk about how my therapy session went and got support around it. There maybe future discussions about CBT.
I had therapy yesterday and we talked about my ED visit went. I told her I was freaking out over my lab results, thinking I was having a heart attack. Tomorrow when I see my pcp I am going to discuss what the lab values mean as having this marker in the blood indicates some kind of cardiac injury. I also asked my therapist if we could role play a bit about me asking for the blood pressure medication that I want so that I don’t get turned down. I didn’t want to come off as obstinate but I really think this med will be better as I have been on it before and had little to no side effects from it. We talked for more than a few minutes about it and I wrote down how to approach my pcp on this issue. I just hope I remember.
We then talked about how I feel we are divided and not on the same page about things. That is when she said to me “take the reins”. I was like what? She repeated what she said, adding that I was in charge. I was flustered. I couldn’t believe what she had said so I got my journal that has the notes to the bCBT book and shared with her what a structured session looks like. It had listed “agenda” and then went on to list other things. I asked the author of the book what is meant by this and he gave me a more descriptive outline of what the session looks like. I think there should have been an “:” to indicate this. So I went to my blog for the crisis response plan (Suicide Crisis Response Plan – midnightdemons7). This needs to be reviewed. In it, it said that if I get specific I should contact my therapist or psychiatrist. I should ask them if this is right or if I should just go to the psych ED. My therapist might not be available but I will bring it up with her when I meet with her next as that is when we will start with the new sessions I guess. She agreed to allow a new skill to be introduced and to practice it while in session. I think this is going to work out now as this seems more collaborative than what it was in the past where I spent the time just talking or not talking during session. I asked her if she was more DBT oriented or CBT. She said she was CBT so that will help a lot during the next few weeks. I am glad this is happening because I really felt like we were going on different directions. It just seemed like we would talk about stuff and then she would ask what is helpful but never follow up on what was helpful during the week or if I had practiced or done what was helpful. Mostly that meant me reading this manual for discussion. I felt like I was alone in reading it but it not going anywhere. I also felt like it was pointless to read if I couldn’t share what I was reading.
I have a busy week. Tomorrow I see my pcp and that is going to take a lot of energy. I wanted to get my hair trimmed but my barber had a death in the family. I contacted him today and he said his sister died. Her breast cancer had come back and it wasn’t a good prognosis. I am surprised she last this long. It was more than a year since she was diagnosed with this. I set up an appointment with him for Sat. Fri I plan on making his favorite dish, chili cornbread. I just have to get the ingredients. I will Thurs after my session with my psychiatrist. I will also ask him if I can contact him in an emergency as we have never discuss this before. There wasn’t really a need to as I really haven’t been in crisis since he became my psychopharmacologist.
By Sunday, I am just going to rest as I will need it. I don’t know when I will be able to read. I got hit with a flare up and couldn’t finish this blog yesterday. The flare was so bad that the bones in my foot and leg were aching very deeply and intensely. The pain in my leg is higher than it was and I fear that the CRPS is spreading. I want to contact my neuro and see if I can get a bone scan to see if it is CRPS or something else. I don’t think an X-ray will show anything as It only hurts when my ankle or foot is flared up and when I am resting on my bed. It doesn’t hurt when I put weight on it or walk on it. It is a very unusual type of pain when it comes on. I am feeling better because I got some sleep. I woke up around 0030 and had something to eat as I was hungry. I had honey nut cheerios. I emptied my bladder because it had been more than five hours since I last emptied it. I probably will have to go again as I drank the milk in the cereal and had some water afterwards. It’s 0130 now and I am not so tired. I might read the book for a bit until I am tired and can get back to sleep. My pain has finally settled down.
I got my blinders on and my anxiety has taken the reins. We were able to talk about it. I got one of the reins back but not the other one. I am so set on disappointment that my suicidality is in only mode which is a huge red flag. Therapist knows this even though I am being vague. She said psychologically I am ok to have the surgery but that doesn’t mean my physiology is ok, meaning the damn BMI may hinder surgery. I need to wait till April 19th with this weight of anxiety on me and suicidality. Every day is going to be hard and this dysphoria doesn’t help. Hating my body because I am not a male is killing me. I want to be flat chested and I don’t care if I have nipples or not. That isn’t important to me. Having the breast tissue gone is what is important to me. I won’t have bottom surgery because my privates don’t work right as it is. Taking out my clit and vagina doesn’t appeal to me. I actually like them so they are staying. Uterus is gone so no more periods to worry about. But if my size is what is going to keep this breast on, I am dead. I have it all planned out. Which is why I am trying to remain hopeful it will go ok and I won’t be rejected. If I have to wait due to damn covid fine. But if I have to wait because I need to lose 40lbs. Nope. Nice knowing you all. Blinders are saying this. I need More options or the entrapment I feel will suffocate me. Constriction and perturbation is high. That is all I will say for now.
Therapy and covid
I got a message this morning from my surgeon. He said my CT looks good and that I am healing. If I have pain to see him so next week I will see him (provided my Covid test is negative) as I still have pain in my arm. Since my last PT session, I have had less pain but my arm muscles are still sore for whatever reason.
My PT got back to me. She wants to see me in person and to call the front desk to see if this is possible. It isn’t possible because they are going by the 14 day rule rather than current CDC guidelines. I made an appointment for five more sessions. I took a shower today and my arm is hurting from moving my arm to wash up and wash my hair. I wanted to shave my underarms as a forest is there but I couldn’t lift my arm high enough to do it so said fuck it.
I had therapy today. We talked about my sister and her hissy fits. She wants me to not take blame when she goes off on something. I said I will try. She said that she is going back to virtual full time again because the cases are getting big again. Hospital wants to minimize traffic. I would have seen her today if I didn’t have to isolate because of my nephew having covid.
The only medication I have taken on “time” today has been my 4pm meds. I have taken my morning and T shot late. I actually almost forgot to take it until I looked at the calendar. My bladder urge has been horrible today. I either get it and can’t cath or I get it while I am cathing, which hasn’t been good as urine has gone down my leg today. Shower helped clear my nose and eyes for a bit. The dust in my room was really getting to me. Eyes were tearing while I was in therapy.
I don’t know why my left elbow is hurting me. It has to be because of the arm muscles being tight. I have been bad about using heat the past few days. I have the heat pack in the kitchen but I don’t like to spend time there because of Covid isolation. I have been drinking my coffee in my room most days. I have been trying to keep up with fluids as I don’t know if this running nose I have today is cold or covid or allergies. I don’t feel sick. I am my usual brand of tired. I took a Benadryl to see if this is allergies and now I am sneezing so it might be a cold. I slept till 830 this morning because I shut my phone off. I had a few messages. I am glad I shut it off because the surgeon called before 8 am and I would have been pissed if he woke me up.
I have a can of corn chowder that I think I am going to have for supper. Just hope we have enough milk.
New Year new positive
So my nephew is positive for Covid and so we need to isolate for the next week or so. I will have to test one of these days but I am not sure where to go as the place I went to in the past is closed. I will have to call my doctor’s office and find out where to go.
I have been going through my inbox trying to clean it out. I have 48 unread messages, down from 60. I also have been sending read mail either to the trash or to read mail for archive. I haven’t gone through all 100+ emails yet but I am sure by day’s end, it will be cleaned up.
I plan on reading more this week. I have less than 100 pages in the Medical Apartheid book I am reading. I can’t wait to be done with this book because it is so sad and angering. I plan on reading Rory O’Connor’s book When it is darkest next. It is about his suicide research and about suicide in general. I heard it was good and I have followed Rory’s research the past several years now. He is based in Scotland.
I still need to do my meds for the week. I got to call my pcp office tomorrow. I don’t know who will be prescribing meds for me from now on as my PCP has left the practice. I don’t know if I will need to be seen because my heart rate has been in the 100s the past few days. I have stopped the new meds and my blood pressure was high this morning. I will have to check it again tomorrow and see what it is.
The new box of catheters I opened has a lot of defective caths in it. So far there have been five in the box. I took a pic of the lot number I plan on sending to the company when I am done with it because there may be more in there that I don’t know about yet. I have an appointment with the uro NP this week. It will be good to see her to check in. Things have been going okay so far. I still have the bladder pain when I empty but I guess that is just something I have to live with. I am glad I got my uterus taken out so I don’t have to guess anymore where the pain is coming from.
My shoulder pain has been mild the past few days. Taking Excedrin has been so helpful. I cannot put on sweatshirts/hoodies. It hurts too much to pull the shirt down. I also hurt when pulling up my pants so I got to be careful about how high I go. I cannot scratch my left boob or side without excruciating pain. I am glad I have a back scratcher for my back itch. I am glad it is settling down some. Still two weeks before I see the surgeon.
I think because I have been taking extra pain meds my CRPS pain has been down. My ankle hasn’t been as flared up as it usually is. It will still get cold and I will have to wear socks to warm it up and keep it warm.