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.
The past few months have been weird as my therapist has noticed that I am more future thinking than I was in the past. I attribute this to losing hopelessness. I don’t know when it happened. I started feeling less suicidal and wanting to move forward with my transition. It is unusual for me to think of future thinking such as having top surgery and doing what is required to get it done. I feel like I lost some of my suicidality. I just don’t see things as dark or dire anymore. I have noticed that my CRPS pain isn’t at the high levels it once was and maybe, because the chronic pain isn’t so bad, I have become more hopeful about the future.
It is a strange feeling to go from complete hopelessness to being hopeful in a few months. The depression seems more manageable than it was and so the psychache that I feel isn’t as great. I have gone from feeling suicidal on a daily basis to really only when my pain levels are at a 10 or above. The feelings of not being able to escape have gone away as well. For the first time in my life I feel I have a future. I want to lose weight so I can lose the things on my chest. I can picture myself doing this where it seemed impossible before. I can’t attribute this to one thing because I think it is a combination of things. One is the alliance of my therapist and psychiatrist, possible medication has eased the depression symptoms enough that I can see beyond the horizon and not feel like I am drowning so much. Also better pain control and accepting my physical dysfunctions are now a part of my life that is not going to go away anytime soon. I also think that having a community on social media has helped during the dark times because just when I am at my lowest there are people saying that I matter and that they are glad I am still here. Words like that help when you feel like scum of the earth for no reason or when the pain is so bad all you can think about is death.
I also think music has helped to ease the troubles I have faced. For months now, I have been listening to Taylor Swift’s albums, new and old. Her evermore and folklore songs have brought meaning to me as well as the extra songs in her Fearless (Taylor’s Version) album. To identify with lyrics is powerful and meaningful. The songs help to heal the traumas I have been through as well as heal from past relationships and deal with current ones. In her 1989 album, I found a song that I can relate to my current therapist with that helped to deal with our rocky relationship. This therapist has helped me to see things differently and also to come to the realization that I have serious depression. It is something that I always knew but never spoke aloud before. Working through the severity of the depression has been difficult. I think I have come to terms with it and thus the hopelessness it has given me doesn’t seem to strangle me like it once did.
I had an appointment to see my surgeon this morning and got up late. I just finished my coffee when I had to rush to get dressed and out the door to catch the bus. I was right on time for the appointment as the bus was late. The surgeon and I talked about my bladder and how things were going. I said I feel like I am being controlled by my bladder because I am so aware of it all the time and on a schedule to go. She said this wouldn’t be forever and to resume taking the tolterodine for bladder control. She said that while operating she could see that my bladder was inflamed from the nerve damage. We also talked about increasing the Neurontin. She agreed that taking it would help with the pain so I will be taking a dose in the afternoon and at bedtime. She also said that if I have a big day to take an ibuprofen before leaving for it. She wants to see me in four weeks unless something comes up beforehand.
I came home from the appointment and ordered Chipotle for lunch. I emptied my bladder but there wasn’t a lot of urine. I tried again after I ate and still nothing significant. I took some pain meds as I am in pain and the bladder is empty. I took a short nap kind of sitting up on the bed and my back didn’t like it. So now my back hurts.
Over the weekend I sent a message to my neuro telling her about the increase in nerve pain in my thigh. She just got back to me and looks like I will be getting an MRI to see if the L2-L3 herniation is worse. Tomorrow I can call scheduling to schedule the test. I was able to find a lidocaine patch to put on it. I am so happy because I threw out the box that I had because they were expired. I don’t know how well this patch will work but will find out soon enough.
Yesterday I ordered a half black olive pizza and I have one slice left. That will be my dinner tonight. Or was. My sister threw it away. I am so angry at her for doing it. I went downstairs to my other sister’s apt and had some pita bread with fig and some chicken that my niece didn’t want. Greek food is good.
I am so tired I just want to take my night meds and go to sleep even though it isn’t close to 7p yet. I usually take my night meds between 7 and 8p. I did a lot of walking today at my appointment. I then went to Starbucks for a mocha and a pumpkin scone, my first of the season. There is no Sox game tonight so I am glad I don’t have to be up till late. Their games have been averaging at least four hours these days. Long time for a ball game but they also have gone into extra innings some nights.
On a fun note, I colored a page from a coloring book called It’s about to get real unprofessional last night when I couldn’t sleep right away. It is themed as interns should get paid at their sites rather than not, which happens most of the time. It really sucks for a financially strapped grad student working on their final degree. The page has been retweeted a few times and I think that it’s great to give them the exposure so that more books can possibly get sold. Coloring has been a good distraction for me. It also helps me to relax from anxiety and overwhelm. My therapist replied to my message about being overwhelmed with gender dysphoria. She said to journal and write to organize my thoughts. Sometimes I am not able to do that but coloring helps to calm me down enough so I can write. I don’t know why I have been having trouble writing when I am upset. During certain times I am able to but others it is like I write a sentence and then I go blank. My thoughts become frozen and I am unable to carry on with journaling. It is very frustrating as a writer for this to happen. I am glad that this blog has helped me overcome some of the frozen thoughts as I have been able to write at least 500 words most days. If I do less, I do less. Some days I can’t so I just post a picture of an animal.
Tomorrow I see dermatology to get my skin moles looked at. I am kind of nervous about getting there because I have to take the Orange line and then a shuttle bus to get there. It is going to be a long day.