Transition appt and other things
I’ve had an early day as I woke up around 5. I decided to stay up as I needed to get up at 7 to shower and get ready to leave the house the latest at 815. I played with my phone, talking to a fellow tweety buddy about stuff. I had woken up with spaghetti arms and she never heard of the term. I explained that it was a side effect of my antipsychotic medication. It doesn’t happen often but it does happen now and then. Around 6 I decided to heat up a burrito and then shower. For some reason, my heating method didn’t work as well as before as parts of the burrito were cold. I might have to use the second side at 40 seconds rather than 30. I had a glass of juice and then hit the shower.
By the time I was done, I was wiped out. I had about 45 minutes before I had to get dressed so I decided to risk laying down. I set my alarm and when it went off, I didn’t want to get up. I laid in bed for another ten minutes before getting dressed and leaving the house. It was sunny out and a little chilly but it would warm up a little by the time I got home. I just caught the bus to the station. While I was on my way, my friend texted me saying that she couldn’t meet me because something came up. She felt bad as she was looking forward to seeing me. I told her not to worry. I will be having frequent trips to the health center so there will be other opportunities.
The appt went well. I asked him what to do with the one female hormone I am taking to stop my periods. He said once I start testosterone, I can switch to a progesterone only pill until the T builds up in my system to adequately stop my menses. I might have a period or two while adjusting. He needs to talk to my psychiatrist and therapist and then I think by next appt, I could be ready to go for T shots. It will be weekly and could take as long as 6 months to show changes because of my age. I asked about top surgery and he said that can be discussed once I have begun changing. He asked if I wanted bottom surgery and I said no due to my nerve injury. I still don’t know how T is going to affect my sex drive or how it is going to be. I am kind of worried because when I was sexually active (some 15+ yrs ago), after my nerve injury it was very painful and I hated it. Since I have been out of that crummy relationship, I have not been with anyone. It’s so damn hard because even my urine is fucked up some days. Like the other day it was like all I did was pee. Then the next day, I hardly peed at all, no matter how much I drank. It’s so frustrating.
With the length of this transition, I am kind of thinking of how my plan is going to be and what to do about it. I haven’t put anything in motion, mostly because I haven’t been up during business hours to place phone calls. I emailed my psychiatrist in a kind of panic email about all of this as I was in a pain flare and basically going nuts like I do. I just get so overwhelmed with anxiety during a flare, like the world is ending kind of feeling. I also become more suicidal as I want to escape the pain. I don’t want to live anymore if I am supposed to spend the rest of my life in horrific pain every single day. I don’t know if it will be worthwhile going through the transition or to start it. I don’t know what to do. I keep thinking it will pass and I can manage the pain again, but then there are days where I am set in my ways and I want to go through with it. I still have time as it will take some time to organize things. I have no deep rush. I do know it will be sometime this year. I just don’t know when, specifically.
Oh my blood pressure!
I had about 4 hours of sleep last night. I just couldn’t sleep. My brain couldn’t turn off and then pain started. I couldn’t get comfortable. I was talking to one of my British friends and she was telling me about strong tea. She gave me the brand she uses and in my Painsomnia state, I ordered it. I have been making a lot of purchases while I am up all night. I told my psychiatrist and she said that if my spending got out of hand, to let her know. I said I would.
I had six shots of espresso and that wasn’t a good idea for my appts as I was kind of jittery. My emotions were all over the place because I didn’t sleep. I lost track of when I was supposed to take my pain meds so was late by the time I got home. I saw my psychiatrist and all I did was cry out of frustration. She read the notes from the pain doc and it said what I told her. She encouraged me to collaborate with the pain doc. So I settled down and said I was going to try. That was the plan. Should have worked, right?? Yea, like a snowball in hell!
I met with this fellow that I swear is stalking me. Nearly every new appt I have had the last few months, he has been there. Today he was the fellow I saw before the attending. We chatted for a bit and then he went to get the attending. I told him I wanted to be put on methadone before leaving. He said he would relay the message. The attending comes in and said he had a long conversation with my PCP about what to do. Now it becomes a three ringed circus, because these two doc (pain and pcp) will collaborate with my psychiatrist before deciding on what to do. WTF!! I asked what I was to do in the meantime. He didn’t say anything. He did say that if I had continued bone pain, to let my PCP know so he could order a bone scan to check for a bone infection. I have been having this pain for more than a year. I had a bone scan in November that didn’t say a thing about infection. I am so fucking pissed. I am done. I was speechless. As I walked to the train station, I put on Pearl Jam and listened to it LOUD.
My psych wanted me to let her know how the appt went. I told her I would page her when I got home. I emailed her because I was watching the game and didn’t feel like talking. I came home, made dinner as I watched the ball game, tweeted or posted on Facebook on the plays. I was so exhausted. I still am. I feel so lifeless. I have decided to put my plan into motion. Monday I will be making some phone calls. Soon as I have my affairs in order, I plan on going through with my plan.
At a complete loss
I had requested my medical records from the pain clinic to see what they said about me. Mostly I wanted to see if they got things right and then see what else the fellow wrote. Basically, they don’t want to treat me because of excuse after excuse in opioid therapy. They really didn’t offer much in ways of treatment, other than to continue with PT (don’t see that happening if my pain is not controlled!)
I feel defeated. I see my psychiatrist tomorrow and I will tell her I plan on seeing an assisted suicide doctor. I don’t see what choice I have. I do have my second appt with the pain clinic but at this point, why bother? They aren’t going to do anything to help me. It says as much in their notes. I am not idiot.
I got my medical insurance invoice. The premium is now over $200 I have to pay every month. Just lovely. I knew it would be as my medical (not including vision and dental) is $198. Unfortunately, I need this in order to pay for my prescriptions.
I know my family and friends and bloggers will miss me. I wish I could stay. I just can’t bear the pain anymore. I was up and down stairs all day because we had the plumbers here to fix the shower. I also had to tell my mother what they were saying because she is hard of hearing. Even though I took a nap, I feel like shit. My ankle and foot are so damn angry at me because I took a shower. I had to. I haven’t had one all week! This is getting ridiculous. I was used to shower every other day. Now it’s maybe twice a week. Yeah, my quality of life is so good. Maybe I should cash in my pension from the hospital so my family won’t have to worry about funeral expenses. I know how hard it was when my father passed. We had a whopping few hundred dollar inheritance after all was said and done. Think I bought groceries with mine. I live the life. HAHA.
I know my psychiatrist is going to put up a fight with me. I am not looking forward to it. I hate arguing with her. But she is for life. She has done her best to keep me alive all these years. Just wish other doctors were as dedicated. She has been my biggest supporter, even when I thought there was nothing left for me do, as I have many times before. This time feels different. I don’t know when. I think I shall start the process of getting my pension and once I have it, pay off all my debts then give the remainder to my sister to “hold” for me. I know what a pain it will be to access my accounts once I am gone. It was hell just to write a check when my father passed.
Daylight savings time mess
I slept nearly every two hours the whole night. I gave up around 6 and had something to eat then tried again and was successful. I slept the whole day! I woke up slightly a few time, but I mostly stayed asleep until 1615. I took my pain meds and then went downstairs to make something to eat.
My brother in law got me rolls instead of hamburger buns. It was okay. I made the Manwich and it came out good. Now I have a quick meal the rest of the week. I decided to shower after I ate as my pain was still pretty low but creeping up. As I was in the shower for a few minutes, there was this awful noise and the pipes were vibrating. I moved this lever thing and that stopped the noise but by the end of the shower, I was losing water pressure. My mother and brother in law heard the noise. I told my mother what had happened and she said she would call the plumber tomorrow.
My foot was not a happy camper by the time I dried off and got dressed. I filled the pill box for the week and that made it more angry. I am going to put some diclofenac gel on it to see if that helps calm it down some. I really don’t want to take the strong pain pill unless I have to. I had to take 3 yesterday to control my pain. I don’t want to get constipated again. That was awful as with my nerve injury, it is very easy to get backed up. I also can’t take senna a few nights this week because I have appts.
I read Facebook and looks like another fricken storm is coming over the next few days. That would explain why I was hurting so bad yesterday. I am going to be hurting the next few days as the snow is going to start tomorrow and end fricken Wed! I hope I can see my psychiatrist Wed but it will depend on what the roads are like and how bad the snow is. If they call for a snow emergency, I might reschedule.
Sometime during my Painsomnia, I wrote about stuff I wanted to discuss with my PCP tomorrow. I see him in the morning so I hope the snow doesn’t start then. I canceled my appt with my therapist for the afternoon. It would be too much for me to have two appts in one day at different locations.
I read some of 1984 last night to try and distract from the pain. I really hope something like that doesn’t happen to the US due to Cheeto’s stupidity and paranoia. I heard he is still trying to campaign for 2020. Idiot doesn’t realize how stupid that is. He can barely manage this presidency! I might not be around then anyways. All decisions will be made by Friday. Just hope my pain is better by then.
I rarely have pity parties. But tonight, something embarrassing happened to me that has been happening for a while and it just hit the wrong nerve. It depressed me because despite recovering from cauda equina syndrome (CES), not once but twice, I was ultimately disabled because of CRPS and chronic pain. Whether CES had a hand in it, I don’t know. It is doubtful as my last surgery was four years before my injury, a sprained ankle that was caused by intense spasms of my foot and ankle. That surgery was higher up the spine than my first surgery so I am not sure it affected my ankle and foot. There are a lot of what ifs, and I was pondering them today. Then the embarrassing incident happened and it hit me in the gut.
I can’t do much over what I have been dealt. I try to move on as best I can despite horrible pain. I am grateful my hands and upper extremities are not affected by pain. I don’t know what I would do if I couldn’t write anymore. I know there are speech to text things but I like the feel of pen on paper or the keys of the keyboard. I have my outlet with my blog to talk about how crappy the pain is and how it brings on my suicidality.
I was talking to my voices today, as I often do. We were discussing the use of testosterone and the effects of what they would do to me. That is if I don’t kill myself when I plan on it, which is soon. It all depends on how next week goes. I am nervous about it. I have even thought about assisted suicide, which may mean leaving the state and going to Oregon where it is legal there. It might take me a few months to save up for it, but what the hell. I can’t seem to get it right on my own. If a doc can prescribe me something to end it, that will help me. I don’t want to be in this level of pain or worse as I get older. It’s bad enough that just making my bed hurts. Making breakfast should not cause pain and I’m not talking something fancy, just making scrambled eggs and toast is a chore. I wanted to go to Starbucks today but my back was too painful because of the shitty weather, which is going to continue until tomorrow afternoon/evening. I’ll probably be in pain the rest of the week, more than my usual pain.
Right now my foot feels like it is being crushed. I’ve had to take my strong pain pill to quiet it down. That was an hour ago and I am still hurting. I am so frustrated that I have to wait for meds to work. Sometimes it’s 45 minutes. Others, up to two hours. I play with the Neurontin dose because I don’t want to be foggy the next day. I’ll take anywhere from 600 mg to 1200 mg a night. Some nights I don’t need it. It all depends. But when I flare, all the guns need firing. Pain today has been mostly in my foot. But my ankle hurt briefly. It piggybacks going up and down, from foot to ankle and back again. Sometimes it is the same pain, sometimes it’s a different pain in the different area of my foot or ankle. I never know what kind of pain I will get. The bone pain is the worse because that is harder to treat. It can be my malleolus or the metatarsals. And is always severe, like can’t move at all severe. I wish there was just one pill I could take for all of the CRPS pain. But there isn’t. And then there is an MGH resident that says opioids don’t work on pain at all. I like him to have CRPS. The meds might not take away my pain 100% but it brings it to a bearable level and that is all I need. Lately my pain has been rampant, a 7 or higher. Used to be a 6, now a 7 is my new “normal”. Before then, it was a 3. That was at least two years ago, maybe? What happens when my pain is a 10 every day? I probably won’t be alive to know. I hope so, anyway.