a busy past few days

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

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.

unable to sleep due to anxiety

Unable to sleep due to anxiety

I have been feeling anxious the past few hours. I took 0.5 mg of Ativan, which probably wasn’t the brightest idea as I usually take 1 mg. I started writing in my journal about why I was anxious, mostly because of my upcoming appointment with the therapist. I just don’t know if this is the start of twice a week sessions or just a one time thing of meeting twice a week. I am hoping to get out of Wed session but won’t know of that till Monday. Ugh. I don’t know why I am nervous other than the fact I don’t want to be cornered into sessions. I still am highly suicidal so on the one hand, it will be good to have therapy twice a week but on the other, I want to die so I don’t want to meet twice a week, hence the anxiety.

I have four appointments this week that are stressing me out. Three are mental health related and the other is for uro. I am nervous about that because I don’t know if I can talk openly about how this self cathing thing is making me feel. It is making me feel more disabled because I am falling apart physically and I don’t like it. I don’t like that I got to keep track of when was the last time I went pee all the time and the thought of putting on a timer or alarm to cath or try to pee just doesn’t appeal to me. So I am just drinking less than I normally would just so I don’t have to pee more than I should. I hate being in this place. This whole thing also has made the constipation worse. I really think because I am not using the muscles to empty my bladder which are the same muscles to have a bowel movement, my bowels have decided not to move so much, even with taking laxatives and stuff. I just can’t deal. No one understands and I don’t even know who to talk to about it. Just makes me feel more suicidal.

This salivary gland thing is not getting better like I thought it was. There is this pressure on my throat from the swelling. It’s not painful, just uncomfortable. I look like a pelican as I have a pouch of swelling under my jaw. It is making the muscles tense and it is so hard to relax. I guess I should take some more Ativan just to relax the muscles so I could possibly sleep tonight. I just emptied my bladder, which wasn’t much in there like I thought there would be. Hopefully I can sleep through the night because I really don’t want to be up all night like last night.

DDDAAAAAAAA YANKEES LOSE!!!!! I am so happy the Snakes choked again. The Houston Astros are going to the World Series with the Washington Nationals. I am rooting for the Nats to win the Series. This is the first time ever they have made it to the Series. I partly stayed up to see who would win as the top of the 9th, the snakes tied the ballgame. I was so happy the Astros won the bottom of the 9th with a homerun.

In addition to the four appointments I have this week, I also need to make four phone calls. One is to the uro’s office to make sure I have the right office I am going to. I got to ask the uro about why she wants me to see an occupational therapist. She told me she would refer me but I am not sure why I have to see one. Maybe when I tell her I have the hang of it, I won’t have to. I am sure it is up to me but other than them giving me tips on how to carry the stuff, I don’t think they can be of help unless they can suddenly let me grow a third hand. The other one I need to make is for my food stamps. I need to find out if paying for private insurance can count as an expense so I can increase the money I get per month. I am disabled so I might be able to have this new medical expense with the catheters on too as it’s like $50/mo for it.

My suicidal mood is up to planning a date again sometime soon. I can’t help but think about it because it just is what I want to fucking do. I don’t want to live to see my next birthday. My rebirthday is coming up next week. It will be two years living as G legally. I really love it and wish the rest of my transition could go through but unfortunately it can’t right now because of this fucking construction business. I found out a few weeks ago, it isn’t happening till April. Well, that is all well and good as I will be fucking gone by then. I don’t want to live to see my 44th birthday. I just don’t. I can’t stand living this way anymore, between being in pain every fucking day, being depressed, and now medically falling apart…it is just too much.

heartbreaking day

Heartbreaking day

I left my house a half hour earlier than I wanted to because I just couldn’t sit around waiting for the bus after I shaved and brushed my teeth. I won’t be shaving the sides and back of my head anymore as I fucked up the back and sides top hair. The razor got too close. So now I will let it grow out. I might let my facial hair grow to, though my mustache is taking forever right now. I wanted to get my eyeglasses today.

I got to Boston around 1 and by 130 I was done. I only bought sunglasses as that was a priority. I was then told my insurance only covered one pair of glasses per year. Fuck. That would mean my glasses would be out of pocket and run at least $300 minimum. I might have to use the online sites to get them. I can usually get them for around $80 or so. I think I am going to try another place than the one I used before, only because the glasses need to be adjusted, though I don’t know what my pupil distance is. I don’t know if I still have the measurements from the last time I ordered. Will have to look.

I then went to the hospital and had something to eat at the café. I already had my Starbucks and didn’t need more caffeine. After eating, I pulled out my journal to write as I had an hour to kill before my pcp appointment. About twenty minutes later I get a phone call with the hospital number. I answer and it’s the psych department wanting to schedule an appointment with the new psych. I swear my heart took a dive and stayed there the rest of the afternoon. I almost lost it after setting up the appointment. I had to see my pcp in like twenty minutes and I couldn’t have an ugly cry breakdown. I stuffed the feelings and then got anxiety really bad. I think my heart rate dropped because after walking to the office and going up some stairs by heartrate was only 65. It should have been higher. My pcp and I talked about pain meds and he wanted to change it to something else, but he didn’t know how to do it. He is going to send me to a pain clinic west of Boston where I see my neurologist. He asked if this was okay and at the time I agreed. I got my meds refilled and then set up another appointment to see him in a few months.

As I was walking to the train station, the anxiety got worse. I didn’t have my meds on me as I didn’t wear the jeans shorts. It was too hot out. I listened to music, I didn’t care what kind at that point; nothing was going to calm me down. I got to the Square to wait for the bus home when it grew dark. T-storms were going to happen and I was going to get caught in it. Sure enough by the time the bus got to the main road where I get off at my stop, the skies opened up. The downpour was sort of refreshing but freaking cold. It came down so hard and fast streets were flooded. I must have walk into at least half a foot of water as my street is at the end of a hill. It was fun walking in the rain but at the same time, not so great for my ankle as it was kind of unsteady with water in my shoe with the AFO and the other’s laces untied. I was completely soaked by the time I got home. I was glad my niece was home as I asked her for a towel to dry off some before heading upstairs. We have ceramic tile floors and I didn’t want to go flying. I am glad my sister was home to get me a change of clothes. I dried off and then put my wet clothes in the dryer. I then got to my room to turn the AC on because even though I dried off, I was sweating a lot. The temp dropped 20 degrees but the humidity went up to 83%. After I cooled a little, I went back downstairs to put my sneakers in the dryer and get my portable charger out of the bag so the wetness didn’t ruin it. I had to charge it anyway.

With all the ruckus of the storm, my anxiety went away but it came back like an hour later. My heart rate was in the 70s so that was good. I thought it might be because I was hungry so had a protein bar. My ankle acted up so I didn’t want to go downstairs. I was kind of hungry but didn’t know what to eat. I didn’t want to cook anything. I still had the breakfast burritos but didn’t feel like having one. Those were for my really bad days. I had some pita chips and called it a meal. By the time I came back to my room, the pain had gone up considerably. I became suicidal instantly and finally made up my mind about it. I had always given myself dates that were a long time away and I had enough. So I may or may not go through with it soon. Guess it will all depend on how I feel that day and where I do want to end it. I am trying to stay so I can see my psych again but I just can’t anymore. The pain is too great and from what I read about the medication my pcp wants to try me on, I just can’t deal with both physical and mental pain at the same time. My heart is broken since I said a temporary goodbye with my psych and I hate having to continue my care at the place she was forced out of. I met her when I was a teen so she is a child psychiatrist. The new psych specializes in geriatric psychiatry. I have gone from one end of the spectrum to the other. I emailed my psych this but didn’t get a response. Also emailed her about what my pcp wants to do with my pain management, which isn’t going to be anytime soon. After 28 years of dealing with my mental illness, I have to call it quits. Monday I had to go to the ER to rule out cauda equina again because of my bladder issues and severe back pain. My degenerative disc disease has gone from mild to moderate and nothing can be done about it. So in addition to being in pain in one shape or other, what the fuck do I have to live for and why?