Author: Midnight Demon

Being disabled sucks

I had wanted to try the bus routes to see my pain doc today but I woke up really tired despite sleeping ok. I went to pee and took my meds then went back for a nap. I woke up more tired than I did before. I should have stayed up. I had messages from the pain doc when I got up. She has an availability on Monday and they wanted to know if I could see her then.  I thought of all the bus rides and said fuck it, I will take an Uber there even though it is going to cost me close to $100 round trip.

I had my coffee and some cake that my sister made. It was a good lemon cake. I love lemon cake.

I had therapy yesterday, an urgent session. I was feeling overwhelmed with talking to the palliative social worker the other day. Pain has been bad and I had posted that I wanted to die on Twitter. A dear friend in South Africa sent me a message yesterday morning saying that he needs me. Told my therapist and she asked how I felt. I don’t really know how I felt or how I answered. It felt kind of good but in a burdensome way. It made me think about who I was leaving behind. I am just so damn tired of being tired and in pain every single day. I need a nap in the afternoon to function, and for what? Not like I have a job or anything to commit myself to. Most of the time I have doctors appointments and therapy. It’s a juggling act. I have been trying to schedule a study blood draw for the past three weeks and the time keeps changing because I am too tired to go into town. I don’t know if this is part of Covid just making life worse for me or not. I just know I want to fucking die. Been saying this for years but survivors guilt is real. I don’t know why suicide holds a different kind of grieving process over natural or cancer death. It is interesting how it is viewed. Most people refuse to accept it and have said that the mental illness is what killed them. Chronic pain and depression is what is killing me. Being disabled doesn’t have its perks. Covid hasn’t helped matters as I rarely go out these days.

I was thinking about how fucking stupid a urine “pain management” screen is for someone on opiates of the highest caliber. The drug I take doesn’t register on the panel. That is why it is stupid so if my doc wants to make sure I am taking my meds, she will have to order something else.

I will be taking my night meds soon. Ballgame starts about the time I plan on taking them. I am really tired because I didn’t nap this afternoon. I slept in so couldn’t really rest. I tried but my bladder said no no no. I haven’t been drinking as much as I should yet my kidneys still function. I think they over function to be honest but there isn’t a test for that. I output a good volume when I cath versus when I void. I don’t know if the “new” uro meds are doing anything. I know it has been hard trying to take the one three time a day and the other on a full stomach because I don’t eat that great most days. I am usually eating ok the first two weeks I go shopping and then I am out of stuff and just can’t make dinner or lunch.

I hate spring time because of the blooms. Some scent has been in my room on high pollen days and I am sniffeling all day. Chronic Rhinitis is the medical term. I have to use flonase or sniff sniff. Works in a few days time. But I hate sniffing the stuff to make my nose feel better. Stuff is nasty at the back of my throat. Sucks.

Planning an adventure

I sent a message to my pain doc asking if she could help me or if I would be wasting my time. I told her the situation. She is out for the week so her nurse called me. After a little phone tag, we finally connected. She said that it would be better to see her in person and that is when I was worried. The doc’s office is in no where land according to the T but I think I figured out how to get there. I would take an Uber but it’s $50 one way. I might take an Uber back home, depending on how tired I am. I plan on taking this adventure probably Friday to see where I am going and how difficult it is to get there. If it is difficult I might ask my sister if she could take me.

Last night I finished my workbook on BCBT. I started reading On Juneteenth. It is a really easy book to read so I think I might be able to finish it by the end of next week, if I keep a steady read schedule.

I finally made an appointment to see my ortho guy for my shoulder. I am tired of it waking me up in the middle of the night. Thing is though, it is not really my shoulder but my bicep and deltoid muscles that wake me up. They flare and I am in so much pain. Sometimes just getting up and sitting up for a little while calms it down. But then when I lay back down again, an hour or two later, the pain is back so I have to take something for it.

My foot/ankle has been hurting me most of the day and now the pain is back up my leg. My shin really hurts and I haven’t done anything all day. I just been drinking coffee to stay awake. I had three cups so far. I am thinking of having another one but I had a big lunch so I am really full right now. It’s raining so that is why I am hurting. I am going to take some gaba to try and settle it down. Hate hurting so much.

My pcp responded to the echo report. It is normal and she still recommends I go see the cardiologist/EP to see if there is more to be done about the tachycardia (fast heartbeat). I am struggling with this because the appointment is virtual not in person so how is he going to know if I have a fast heartbeat that day? I just hope I don’t have to go through a stress test. I saw my father go through one and it wasn’t fun.

I am having #4 cup of coffee to avoid a nap. I am so tired. I haven’t showered or brushed my teeth today. I plan on taking the shower after I finish the coffee. Hopefully I remember to brush my teeth!

Thoughts on thinking

Do you find that personality disorder is complex trauma and diagnosed more because they can’t fix PTSD? And label bpd due to the complexity of the trauma? So rather than dealing with the trauma the person has, just label them as BPD and go from there.

These are some thoughts I have about bpd and trauma. I am a highly sensitive person and because of this I have been thrown into the BPD realm of diagnosis. I also have complex trauma that no one has looked at. They just look at my suicidality and depression and deal with that most of the time.

My thoughts today also centered around palliative care and end of life care. I am done being in pain and want to die because of it. I don’t know if I will find a doctor to deal with the pain because I am not terminal. I have pills that I hope will be enough to do the job. I have others too that can be mixed with it but I don’t want to be a polypharmacy as you can end up vomiting and then surviving.

I have sort of talked about this with my therapist but seeing as I want top surgery first that has been my top goal right now. Maybe I will feel better afterwards so much so that suicide doesn’t have to follow through.

I have been in severe pain since last night. It started with my big toe and then went into my foot. Now it is in the other side of my foot and bones are aching. I have had enough. I don’t care if they think that the depression is causing me to feel like ending my life but pain is causing some part of it too. I don’t think the pain up my leg is CRPS because pain is the only symptom I am having. No other symptoms are present and I need at least 7 other symptoms. So finding out what is causing the pain will be important. But I got to find a doctor that will look into it.

So the magic of Twitter got me in touch with a social worker in Colorado about death with dignity and palliative care. I said it all depends on how the pain doc appointment goes. If she doesn’t want to treat me then I will ask my neuro for palliative care. This will all happen after top surgery. The SW is willing to support me in anyway she can and to help go through the motions of what needs to be done. I told her I don’t want the CRPS to spread up my leg and there isn’t a treatment for it. I am hoping she will increase my pain meds so I can get some relief when it flares up. I am so glad she accepted that I had chronic pain and it was a huge cost to my dignity. I know my therapist has said I haven’t gone through all the things I could with physical and emotional pain but I think in a year or so, I will be closer to my death. I just hope I don’t wait too long and have it spread to my knee.

I haven’t showered or brushed my teeth yet today. I don’t think I will be showering. My leg is too painful. I will brush my teeth before bed. I had put the tasks in my phone but I just shut them off without doing them. I knew it would be a hassle to do.

I didn’t sleep again last night. I woke up with shoulder pain and I just couldn’t go back to sleep. Then I took some tizanidine which I forgot interacts with my blood pressure pill so I was feeling pretty sick. My blood pressure dropped really low. I drank some fluids to bring it up. It was a rough night. My foot was really hurting and I finally took something around midnight. I had taken the tizanidine so that my foot wouldn’t cramp up. It has been doing that for a while now, even though I take magnesium for it. Sometimes I need both. I just need a lower dose (4mg) of it not a high dose. UGH.