Tag: CRPS (formerly RSD)

bad night of pain

by Midnight Demon, posted in baseball, blogging, depression, FTM, gender dysphoria, grief

Bad night of pain

I was listening to the game and it was tied so I decided to shower as I smelled. After the shower, as usual, I was exhausted and then my foot/ankle flared up on me. It is still hurting. The Sox lost and I am upset about it because they had so many chances to win. It was an up and down game so really hurt to lose.

I had therapy yesterday and my therapist really upset me. She said that I don’t need to be in the hospital and said I could go to the ED but they won’t do anything for me. I know this isn’t true. She didn’t evaluate me on my suicidal risk so she really doesn’t know how bad I just don’t want to be here. I think if she knew that, she might change her mind. She thinks I need partial but I don’t want to go to skill groups. I think they are a waste of time for me because I can’t really grasp things like I used to and besides, these things take practice. I can learn it from a book more than a group setting. The book I am reading now on CBT and suicidal thinking is helping more than anything else that I have read on the subject. Book is called choosing to live. It is an excellent book. I was in a mood yesterday so didn’t bring it up like I wanted to. There was a section I read that I wanted to share with her. She makes me so angry. I don’t know why she doesn’t trust me that I know better of what can help me when I need help. I think being in the hospital will help me because it has in the past. It kind of resets me. Right now I am not doing good. I am not eating or sleeping right. I am tired all the time. I wish I were dead. I also know that maybe spending a few nights away from home will help me with my PTSD of listening out for my mother so that maybe my sleep will get back on track. I know my mother is gone but I still listen out for her every time I am awake during the middle of the night. I’ve tried to calm myself by saying it is ok and that she is gone so no more looking out for her but that just makes me sad and I miss her even more. Grief is a hard thing.

I am so tired and wish I could sleep. My sister left her room so I am waiting for her to go back to it. It is so stupid that I am listening to this shit.

I made a bacon sandwich when I got up but it didn’t taste good. My taste buds are off. Even my coffee didn’t taste good. I had a pop tart, too. It was okay. That was the only thing that tasted right today. I haven’t eaten anything else today. I really want pasta but I don’t feel like cooking. I had an Ensure that I take with my meds as I need 350 calories to take for it.

Tomorrow I have three appointments. I have PT, then my pcp appointment, then the bereavement group. My therapist thinks I should have some time with the group before I go in the hospital as I said I would give it another two weeks time. She thinks grief is going to take longer. She might be right. I don’t know I just feel so damn lost.

I have been having nerve pain in my chest on the left side and it is freaking me out. I know it isn’t cardiac because I am not having any other symptoms but damn, the pain is so intense. It is like a stabbing pain. The swelling on my right hasn’t gone down and now I am wondering if maybe I should be massaging it or something. I sent a message to the NP to see if that will help. It just looks like I have breast tissue again and it is bothering me. I hope that what I feel isn’t fat as that will take more than massage to get rid of.

I haven’t had the time to think more about my personal statement for UMB. I got the letter from my psychiatrist which doesn’t say much other than that he cleared me for attending classes. I wish my psych was still my psych so she could write something for me that would help me other than just clearing me for classes. I guess they need detailed information. Just lovely. Ugh. I can do this. I wrote a damn memoir for crying out loud. Why is this so hard? I am currently working on another memoir. I have gotten so good at being concise in my writing, I find it hard to expand on things. Some story teller I am.

One of the groups I am in on Facebook posted about a trans book. I plan on getting it next week when I get paid. I am also planning on getting a t-shirt that says Baseball Isn’t Boring. I think that will be cool to get. I am a hard lover of baseball.

therapy black out

by Midnight Demon, posted in blogging, Chronic pain, CRPS, depression, mood disorders

Therapy black out

Trigger warning sexual abuse talk

I had therapy today and in the middle of it, my power goes out. I had to use my hotspot to connect but because I was in the dark, I didn’t turn the camera on. UGH. We were talking about trauma and specifically my mother’s abuse towards me. She sexually abused me from the time I was young, like age 2 to 13. She always had to look at my genitals or breasts. Now that I have been cathing for a while, I still have flashbacks to when she touches me when I touch myself. In my pediatric records, the doctor notes that my “vagina was closing” according to my mother but I wonder if it was really my urethra as it is in my vaginal opening. I’ve had a few UTI’s growing up and I wonder if it is because my mother stuck things in there. I also had a trauma medical procedure done to me when I was five. I had to be restrained physically and chemically for the doctor to do the procedure. All I remember is that I was screaming for my mother to get me, to comfort me, and when she didn’t come, I felt abandoned. I hated my mother for not being there. It was then that I started hearing voices.

Today’s WordPrompt from WordPress is transition. I was talking about my transition today with my therapist as my mother misgendered me, again. It invalidates me and makes me think my transition is not worth it. As I will always be seen as a “daughter” to her rather than a son. She thinks she owns me. I haven’t told her that I will be having top surgery yet. I want to make sure the insurance is going to cover it. I don’t want to tell her and then it not happen. It is five months away anyways. I am hoping that I can have it sooner but I got to know insurance will cover it first.

I am going for blood work this week so asked my pcp if they also need a urine sample because my test strip for home testing tested positive for white cells. I don’t know if my bladder is still inflamed or what. It still hurts though and even though I am starting the estrogen cream tonight, it could be a month before it has an effect. I was going to start last night but I got too tired to put it on. I was going to put it on after my last cath for the night but I didn’t want to get out of bed. I was comfy.

I woke up a couple of time during the night to pee and I was on the same schedule as my mother as every time I had to go pee so did she. I might have to hide the benzoyl peroxide I bought as I found it on the sink rather than in the cabinet. The last tube I bought was used by family members. I never had a chance to use it because it was used up before I could or it went missing on me. I have a breakout of zits right now and need to use it. For fuck’s sake, I bought it with my money and the shit is not cheap. Pisses me off that someone keeps using my acne products.

I wanted to make a zucchini chicken stir fry for supper but my ankle and foot are hurting me too much. My mother is just going to make the chicken with salt and pepper for me. I just realized I haven’t eaten anything since breakfast this morning. I never made lunch like I had wanted to. Therapy just got me so upset.

Chronic illness and disability causes grief

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, disability

This was posted in the CRPS and RSD group on FB.

CHRONIC ILLNESS and DISABILITY causes GRIEF: by: Angela Piccolotti

No one tells you that you will grieve when you become disabled and/or chronically ill. Grief is expected when a loved one dies but you don’t expect it when you experience a chronic illness or disability.

The process is the same. You go through all the stages of grief: denial, anger, bargaining, depression, and acceptance. These stages are our attempts to process change and protect ourselves while we adapt to our new reality. The feelings are the same. The only difference is that instead of a loved one dying, it’s like you’ve died. Your life’s hopes, dreams, and plans are dead. Who you were and who you wanted to become are gone. Everything you used to be. All forever changed.

You break your own heart over and over again because you have hope of a restored body and life but no matter what you do you can’t achieve them.

It’s like you’ve died, but still you’re still breathing and you still have a pulse. You’re a ghost in your own life, a shell of your former self. You are haunted by your old self, your old life, your old hopes and dreams, your former health, all you used to be and all you used to be able to do. You remember everything you’ve lost. It’s heartbreaking!

You feel like you’re just taking up space. You feel so worthless. You can no longer DO. You can only sit by idle as life goes on without you being able to participate in it. It’s agonizingly painful!

a busy past few days

by Midnight Demon, posted in blogging, chronic physical pain, CRPS, depression, disability, FTM, gender dysphoria, mood disorders, psychology, PTSD, suicidality, writing

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.