CRPS doesn’t care about hot temps

CRPS doesn’t care about hot temps

It has been muggy in the house the past few days as a warm front is passing through. Temps have been above 70 degrees and I have had the AC going. You would think that would be a cause of my foot being cold but I shut off the AC a few hours ago and then my foot got cold then exploded in pain. I have been miserable since. All I have had to eat today is two donuts and coffee. I don’t really feel like eating. I’ve slept most of the day. I am just so tired. I dealt with bad emotions last night. My anxiety was at its worst. Sometimes it is hard to know it is anxiety and I need an Ativan to calm down. Once the medication works, I can think clearer and not so dark sometimes.

I had therapy. I asked for an extra session as the dysphoria was really getting to me. It has gotten to the point where I don’t even want to shower because I don’t want to see myself naked. I wish there were no mirrors in the bathroom. I hate looking at myself. Sometimes I look at myself and think damn I look good and other times I hate myself so damn much I can’t stand looking at me. I have been meaning to trim my beard all week but that hasn’t happened. I just don’t have the energy for self-care. I was able to brush my teeth this morning before taking my meds. I find that if I brush after having my morning void is easier than trying to do it after I have had my coffee.

My day started late because after I took my morning meds I went back to sleep and didn’t get up till around 1300. I had coffee because it has become a routine to have coffee when I wake up. I tried to take a nap after coffee because I was feeling tired but I couldn’t sleep. I was too anxious I would sleep through my appointment.

I realized today that I had a really nuts therapist who really thought she had possession of me. In a way I am glad I am no longer in that relationship but I miss her sometimes. She provided me care when no one else did and was my biggest supporter in my efforts to be me. She went to the poster session with me at my first conference. My psych was to show up but never did. My psych is someone who I miss terribly. It is coming on two years now that she has been gone. It still hurts like the day we said goodbye. We still keep in touch and have had a few zoom calls since then. I never thought this psychiatrist would be on zoom but she did.

I have to plan my grocery delivery. I got to remove some stuff from my cart so I don’t go over my limit. I am going to the store on Monday with my cousin. I will get the stuff I am removing then. I need to have the heavy stuff delivered so it is easier to bring upstairs. The ice cream and steak I can get at the store.

news broken and…

News broken and…

I broke the news about my having surgery and my mother burst into tears for god knows what reason. Even after her breakdown she didn’t know why she cried. She obviously doesn’t want me to have surgery. She doesn’t understand and my youngest sister tried to get her to. I don’t know how much of it was because she couldn’t hear or just couldn’t tolerate talking about it. My middle sister was adamant I was being selfish because I didn’t think of my aftercare. She doesn’t want to take care of me so I will have to have home services if I need it. Fuck. So will have to set those up as well as meal plan as I will be on my own and as much as I like Ensure, I really don’t want to be on a liquid diet while I recover. I will have to make sure I order some. I already have a $200 grocery tab going. Not sure I will have $40 for a case through Amazon.

I just googled the surgery and it is approximately four hours or more long. Fricken crazy. I wonder if I will have to shave my back. I got a lot of hair back there. The testosterone has made me so damn hairy. I hope I will be okay with everything. My sister was thinking of all the disasters that could happen. Thanks but I am already imagining walking in the hospital and being wheeled out. I have no idea what will happen if that happens. I might have to go to a rehab hospital for a bit but the house is not handicap equip and unless they give out loans to make the house accessible, I am not sure what would happen. Granted we are adding rooms to the house so I could take one but I would need an elevator to get to the second floor or some kind of lift.

I went to Starbucks today to try and write an essay and it didn’t happen. I got into watching traffic and social media. I should not turn on the WIFI but I did and well, 145 words got written. That was it. On the way home my foot acted up and two hours later I got the worse pain spasms ever. I was screaming they were so fricken painful. I just wanted to die. The voices started to ramp up during this time so in between screams I am hearing orders to kill myself. I couldn’t move so I just sat there being tormented. Once the pain meds kicked in, I was able to go downstairs for dinner. The voices are still murmuring in the background but not as troublesome. God they were so fricken loud. One of them is still trying to break through but I am ignoring him. He is eventually going to get pissed at me and I hope not because that will mean I have to listen to him and that will mean hospitalization. I wish I could get hospitalized without my family knowing where I will be going. Sucks I have to tell my mother where I am all the fricken time. I am 44 I think I can handle shit on my own like I have since I was 15.

Today is the official day I got diagnosed with cauda equina syndrome. You can google it or check out my blogs about it if you want. I am not going to say more about it. Because my psychiatrist and I first met some time this month, I think today is perfect to pick for our anniversary. I just sent her an email with my thoughts on it. Figures I would have a flare on my left ankle/foot on this day just to spook me. Having this kind of pain, numbness, and loss of function is what sent me to the ER, on my psych’s urging. She knew then something was terribly wrong and then when the residents called her, she told me at 4 am that I had this horrible condition. I still am and never will be 100% recovered. This is why I am hoping against hope that my surgery doesn’t have complications and that I can walk out the door instead of being wheeled.

and just like that…

And just like that

I woke up when my med alarm went off. I know I fell asleep between 0230 and 0300 so I had a good amount of sleep. I didn’t take my meds right away and dozed until a little after 11. I had to use the bathroom and sort of wake up to talk to my psych around 12. I wasn’t in any kind of mood but pain was already a 7 and I hadn’t done much moving around yet.

I was still sort of dozing and kind of wondering what to do today when 12 came and I called my psych. She didn’t answer so I left a message. She called me back a few minutes later and we talked. I didn’t say anything about the plans for next week other than my appointments. She wants the therapist to be in touch with her and she is reaching out again to the new psychopharm that I will be seeing end of the month. She said she should know what her plans are by then and that I will be the first to know what they are. Back of my head was saying that was good but I won’t be here.

I had to use the bathroom again an hour later. My mother was in the bathroom so I had to wait. I am on my phone when she barges in so use the mouthwash. WTF. I was so fucking triggered because she closed the door and that always makes me nervous. I yelled at her and she is like it’s not like haven’t seen you before. WTF. I am a fucking adult who should be able to have some privacy when using the goddamn bathroom. Bad enough I have been dealing with the intrusive memories of what she did to me as a kid that now is just why the fuck am I still living with her. I just want to fucking die and that is the end of it.

Came back to my room and soon as I sat back down on my bed, pain shot up to a 10 and I was back to my suicidal mood again. I sent an email to my psych. I am supposed to be in touch with her Tues after my uro appointment. I am so apprehensive about it. I know I most likely will have to have an invasive test to see what is going on. I don’t know if I will go through with it as it is just creeping up the anxiety I have and making the PTSD stuff worse. Tentatively am planning on going to my location that day and rolling the dice.

I am not sure if the email that is in my drafts will be sent to my psych next week before rolling the dice. I can’t send it now and I really did not want to say what I had to say in an email. I wanted to mail it to her but I don’t have a physical address for her so that is out. I am sure I can probably get an address via Google but don’t think sending something to her home address would be a good idea. Fucking hate the institution she worked at for forcing her. I am just so angry.

I decided to make something to eat and that proved to be the death of me. I had just finished eating and was finishing up the rest of my coffee when pain just went berserk. It went up to a 12 and I literally could not do anything but force breaths out of my lungs. When the wave of pain slowly went down again, I put what I used in the sink and limped my way to my room. I couldn’t bear full weight on my damn foot. Going up the stairs was fun. I decided to at least put some clothes in my bureau and then I emptied my waste bucket by my bed. Within minutes of sitting back on my bed again the pain hit so damn hard I was breathless. I couldn’t see straight for the life of me. Pain is now a 12 maybe 13, from my ankle bone down the side of my foot. I can barely move as each movement hurts, even if it isn’t my foot. Trying to keep still is torture. I took my breakthrough meds even though I know a sugar pill would probably work better. But maybe it will bring the pain down to an 8 or 6 (doubtful, but could happen). My plans for a shower and doing something in my room are now gone. I got to take my recycling down to the bin and the trash, too. Guess that won’t happen today. I also wanted to package up some gifts for a few friends of mine that have a young child. Hope they will be happy with it. Also hoping my family mails it out should I go.

I am back to living by the hour and what that means is I don’t have a future. Everything seems to far away right now that even though Monday I see the therapist, it feels like years. I don’t know what will be happening tonight much less tomorrow. Monday is just too far away even though it is just a couple of days. An hour or minute is all I can handle right now. I am too overwhelmed with the pain and the suicidality that I can’t deal with anything else right now. It will topple the scales and I really don’t want to end my life in my room. The therapist said I was a pessimist and when I told her it was my middle name, she said she would update my medical record. Hard to be optimistic when you feel so hopeless.

Used to…

Used to…

I used to write in my journals all the anxiety and fear and depression that swept through my heart. The pain of living night after night in despair so great I thought I would never see the light of day again. It was cathartic and once the words were on paper (or in a word doc like they are now), I didn’t have to deal with them. The feelings were out, I felt better. I didn’t have to remember anymore.

I used to write blogs that had some purpose, whether in my clinical papers I wrote or my daily struggles with suicide and depression and chronic pain. It opened a portal so I could share myself with others who were going through the same things. It was the last remaining joy in my life before pain took over. I have been struggling since. Where I would used to write sometimes twice a day and the odd three, I barely write twice a week, if that many. I’ve lost hope in things.

I used to go to therapy with the hope that things would get better. Despite going through 10 in a short period of time (8 years), I still held on that the “right” one was out there. Therapist number 12 I thought was that “right” person until 16 years later we ended, on our anniversary date. She no longer wanted to work with me anymore. I had been in a lot grief since that day. Took me two months to try and figure out if I needed therapy and why I needed therapy. So therapist number 14 came along (13 was the interim therapist I saw while 12 was on maternity leave). He was different from all my previous therapists. He frustrated me more than any of them put together. I skipped sessions because of the anger. Then there were sessions where I felt we were making progress but like the other therapists before him, didn’t go anywhere the following week. In Jan of this year (2019) I realized I couldn’t stay with him after he told me to Google some relaxation stuff for my PTSD. That was the last straw. I had sprained my ankle during this time and decided going to therapy and working on my ankle were going to tax me like it did before. I got physically better, telling him I would go back to him when I was done. I never did.

By March of this year, I was having serious mood shifts of suicidality. In Jan because pain had been really bad, I planned a date to end it. It was the end of March. I had some of my ducks in a row to end it. But the month came and I didn’t have so many ducks as I thought I did. I fell into despair. Pain was keeping me up. The insomnia that I had infrequently, started to become more chronic. I was spending more and more time awake than I was sleeping. Add in not having a therapeutic relationship and I was barely above water. I kept writing my psych of 26 years how bad I felt nearly every day. We were in frequent contact as she was the only person in my team. The day I was to end it, it was raining. I had wanted to end it outside in a desolate place. The rain spoiled it and I had an appointment with my psych that day. I saw my psych as I have never skipped an appointment with her and wasn’t going to start.

April was torturous. By the middle, my psych wanted me to go in the hospital and I said no. I asked her why she wanted me still alive because at that point, I felt so worthless, I had no idea why she wanted me alive other than she “had to.” She told me some good reasons that I still remember. I tried to hold on to those. I starting thinking about writing another book that would be so outside my realm of mental health but would take a lot of research to do it. It would be a challenge and I hoped I was up for it. That lasted a few days. Then I was back in the despair and this time, it wasn’t letting me go.

I used to think that the hospital was a safe haven, a place to recover and get well, learn new coping skills and then be able to face the challenges outside better. With insurances no longer covering long stays, this is nearly impossible. Some people are lucky to stay past three days. Others stay just 24 hours like that has any benefit. I was hesitant to go back in. I was just about as suicidal you could be without actually attempting and I was getting close. There were a few nights where I didn’t think I would make it through the night. I honestly have no clue what kept me here or how I did it. I stayed for three weeks and then my whole world went to smithereens.

I was supposed to see my psych the following week but she changed it to the following Monday. She said she had some news to tell me and I listened. The institution she had been apart of for 30 years was letting her go. She didn’t go into the reasons and I asked her if writing a letter would help and she said no. I have been seeing her for 26 years. My heart broke in a million pieces but I didn’t know it yet. I still had one week left of seeing her and it would be the last until she was some place else, though she didn’t know where yet. She wanted to stay in academia and Boston is the academia capital. All the while I was to see a new therapist, number 15. The first visit didn’t go well. She hammered me with questions, took my history (I tried to stay away from suicide as that freaks mental health professionals out), and who I was seeing for psych. She asked me about my hospital stay and I thought oh shit here we go. She asked what I was to do with crisis. I said call my psych. But according to her, my psych had “terminated” me. I couldn’t comprehend that. I knew my psych didn’t, she said so and she doesn’t lie. She still wanted to be in my care, to take care of me. I didn’t know if I would see this therapist again. She was nonchalant about setting up another appointment with me. I said I give new therapists at least three sessions before deciding if they would work. She agreed on that point.

I don’t know what will happen the next few weeks. I am back to being highly suicidal without a voice. My one or two places where I catharized my feelings are blank, and have been since the day my psych said she was temporarily leaving me. Wed I got a call to see a new psych and I nearly had a meltdown in the lobby of the building where I first started seeing my psych. But I had to see my pcp so had to keep things together. I have had some medical problems this past week that are still unresolved. I never thought my body would be broken down so much at 43, but then, I never thought I would live to see this age.

I used to believe I would always write in some way, shape, or form. I never thought my words would be hard to reach for. Between the physical and emotional pain, the medications I take, and the pressure of trying to stay some what alive for whatever reason when I just want to fucking die, I am at a loss of words. Some times they breakthrough the constriction I am in, the blinders that say that I should die and nothing else matters. My psych asked me if I would be alright for next week, and she said Monday. I told her I didn’t know. I still don’t know. I want to find that desolate place and end it so fucking much. The thought of dealing with CRPS (complex regional pain syndrome) without pain meds is freaking me out, especially as they don’t work as they once did. It is no fault of the medication, just the disease process. Eventually, there will be nothing that will work for it and I cannot cope with that. I cannot imagine spending my life in so much pain when I already spent 28+ years of it managing the mental illness part of me. I used to believe there was hope out there. Now I am not so sure anymore.