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.
Annoyed, anxious, and aggravated
I have been having an anxiety attack the past few days. I don’t know what set it off. I was reading an info graphic about the difference between panic attack and anxiety attack. I read it and found I had anxiety I was feeling. Been like this for the past three days. I took some Ativan like my therapist said and did some deep breathing exercises. It helped a little but I am still on edge.
My mother wasn’t well this morning. Her sugar was low but the meter thing didn’t detect it or go off. My sister said she was still off so I took her blood pressure. Her pressure was low and then we found out she was taking an extra fluid pill that affects blood pressure. We called her doctor and told us to take the BP a few times a day each day and then call next week with the readings. I have been taking her blood pressure manually all day. It has not returned to normal. It is still low but she is not having symptoms so I think she is fine. She has been drinking fluids and we gave her some Gatorade to try and get her sugar up as well. I made dinner of chicken with BBQ sauce and rice. It was a good meal for cooking for the first time. I never made it before. I wanted to grill it but I didn’t have access to the grill. I plan on taking my mother’s blood pressure one more time before she goes to bed.
I got aggravated when my sister texted me again to take her blood pressure all so she could go out. I am pissed at this. I told her I wasn’t going to take it until bed time and she pulls this shit. She said she ordered a monitor and good luck with my mother being a good patient with that. I know my sister she will take her BP every fricken hour or every half hour to see if there is a change. Pisses me off because what is she going to do with the readings?? She isn’t a medical professional like I am. I know what to do which is why I had called the cardiologist to find out what to do about my mother’s low pressure. I am sure if it gets lower she will have to go to the hospital for fluids. Doesn’t help she has soft diarrhea like stool.
I am so annoyed. My stomach has been bloated the past few days because I am constipated. I have been taking Miralax since Monday and have not had a movement all week. I took a double dose of Miralax this afternoon. I just hope it doesn’t cause colon blow. I feel stuff moving but I still have not had the urge to go. It is frustrating me. To help my anxiety I have been taking Neurontin. Surprisingly I have been ok with a large dose. I haven’t walked into any walls. I just been on edge. My anxiety is getting really bad and I don’t know why. I took my night meds early because I have been up since 0530 and haven’t had a chance to nap all day.
I went grocery shopping and spent over a hundred dollars on food. I bought cold cuts, fruit, yogurt, juice, and my Gatorade but I forgot to buy onions like my mother wanted. I forgot to put them on my list. I brought 4 bags of stuff up the stairs and I was so winded. It took a really long time for me to catch my breath. The bags were not heavy but were heavy enough to cause shortness of breath. I was really fatigued afterwards. I had my mother help me put the things away. Then I ate my ice cream that I bought. It had rum in it but because Covid affected my taste, I couldn’t really taste the rum like before. It was a real bummer.
I have started my taper of citalopram and I think I am going to stop taking antidepressants for a while to see what happens. I have been feeling ok the past few weeks. I know I have had suicidal urges but I haven’t been depressed. People think that you can only have suicidal thoughts if you are depressed and I don’t think that is true. I think suicidal thoughts can be independent of a mood disorder. I firmly believe this.
A new show on a hot day
The Sox didn’t play the Yanks last night. Game was postponed due to Covid. Three players tested positive on the New York team. I was so bummed out. I watched a few episodes of Community. I once again had a difficult time sleeping. I kept waking up in the middle of the night. Around 530 I decided to empty my bladder thinking if I did, I would go back to sleep. There wasn’t much in my bladder but I was able to sleep until my med alarm went off. I stayed in bed for another hour before getting up to have my coffee.
I had to go to the pharmacy to pick up my meds so I did that. My mother wanted Sweet n Low but they didn’t have it. I ended up ordering it online. I wanted to watch friends when I came back to my room but it is no longer on Netflix. I saw the Queen’s Gambit and am hooked on it. It is extremely well done. I love chess so it is a good show for me. I watch three episodes back to back to back. I just took a break to have lunch and to write this blog. I don’t know if there is a game tonight or not. They are still doing tests.
I had a 2nd cup of coffee and feel wired. I hope it lasts so I can watch more shows. It is such a good distraction. I woke up this morning in pain but as I have been moving about, pain seems to have gone away. My ankle and foot still throbs, but it always does. I haven’t decided if I am going to shower or not. I hate taking a shower in hot weather when the house is a thousand degrees. I need to shave. I have been putting it off the last few times because I hate doing it. My back always cramps up after a few minutes and it is difficult to take a shower afterwards. Even while walking to the pharmacy my upper back was cramping like crazy. I got to see the PT about it. Maybe she can do some dry needling and fix it like she did my lower back.
Yesterday some people read my blog Don’t call me daughter 2 so I read it. It stayed on topic throughout so I decided to have it included in my book. I am up to 32 pages right now. My goal is to write at least 200 pages. I am writing about my trans and transition experiences.
I’ve been feeling depressed with intermittent suicidal thoughts. I read an article about a clinician who lost a patient to suicide 28 years ago. He talked about how after all this time, we still do not know how to prevent suicides from happening. It awakened in me the thoughts of suicide and the urge to carry on with my plan. I thought about my therapist and how she would react. Would she even care? Then I think about texting her and wondering if she would respond. I am not supposed to contact her in urgent situations. I am supposed to reach out to a hotline or go to the ED. Or I could just act on my urges and say the hell with things. Those are my choices. And only I can choose which one to do. It is a very lonely place.
In keeping with what I wrote yesterday about suicide and future planning, I tweeted this gem “As someone with lived experience, it is hard to let go of the familiar pain. It can be comforting sometimes because it is all we know. Changing or letting go of the pain can be painful in itself. It’s like letting go of a blankie. Hope this makes sense.”
I’ve had horrible insomnia today. I woke up at 1 am and could not go back to sleep. I was able to rest for about an hour. I’ve been keeping my bladder on a 3 hour schedule so I am not overfull and the urge to go isn’t horrible. It has made cathing easier. Because I was up so early, I decided to get my blood drawn for my Testosterone level. It just came back as 294 so I think my doc will be pleased. I have to tell her to give me two vials at a time because one vial just doesn’t work for the dose I need. I used my last refill today.
I made more appts with my PT today. She doesn’t have time next week to see me so I am off a week. I hope she dry needles me tomorrow in my back because today they were flaring big time. I was so miserable as my ankle has been in a flare for more than 24 hours now. I’ve been taking zanaflex around the clock to try and keep the spasms at bay but it might as well be a sugar pill I am taking for all the good it is doing.
I’ve been wicked thirsty today. It is hot and muggy. I had my Starbucks 4 shots espresso with soy milk. It was so good. That has been the only caffeine I have had today. I need to shower but I have no energy. I also need to brush my teeth. I meant to call the dentist today but I never did. Need to find out why I am having jaw pain.
I see a new neurologist tomorrow. I am kind of nervous. Hope she can help figure out the shin pain I’ve been having. Hope it isn’t a CRPS spread. That is what I am worried about as the area is swollen. Just hope she doesn’t want to change pain meds on me. I will be taking an Uber there as I don’t want to expend my energy too much as I have PT in the afternoon. Around noon I am getting my haircut. Got to keep the side and back buzzed at all times.