Category: chronic physical pain

I got my head in a mess

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

I got my head in a mess

Today has been a rough day. I hardly got any sleep last night. I went to bed around 0530 or maybe 0630, I don’t remember. I know it was late (or early) enough to take my morning meds so I didn’t have to wake up to my med alarm a few hours later. I woke up about an hour after my med alarm would have gone off, around 1030. I didn’t get up right away other than using the bathroom. I wasn’t in too much pain but it was friggen so damn hot and muggy in the house. An hour later, I decided to get some coffee. I didn’t want to try and go back to sleep. I had a hot cup of coffee because I am running low on my ice coffee. I have about a half a cup left. I had a pop tart with it but I couldn’t finish the second one (there is two in a package). I had to go to the pharmacy to get my meds. Then I figured I would make some breakfast burritos and then maybe change my sheets.

I went to the pharmacy and when I came home, I was soaked with sweat. I had to change my shirt. I had the AC on so I cooled down before deciding what I was going to do next. My mother said she was going to take the bins out of the boxes and break down the boxes. I said ok. After I cooled down, I broke down the box with the bin that was outside my room in the hallway. I had a good time using the box cutter to cutting up the box. I then threw the stuff downstairs. I realized I didn’t have enough cheese to make the burritos so I had to go to the store to get some more. I called the butcher shop and checked the price there. It was a good price. The next bus wasn’t for another half hour so I put all my bags into the bin that was in my room. That cleared up some space. I changed into a tank top and I was going to wear it to go to the butcher shop.

I went to the bus stop and as I was waiting, my nephew drove by and gave me a ride to the Square. I went to Starbucks and got an iced coffee. Then I went to the butcher shop and the little grocery store that was across the street. I didn’t plan on going there but I wanted to check the price of the cheese. It was expensive so I got some roast beef and turkey bacon. I also got some more tortillas as there were only a few left for the burritos.

I came home and there was someone in the bathroom. I so wanted to shower as I was soaked again. The T and the nerve damage is causing me to sweat so damn much. I can’t stand it. I have been trying to drink fluids throughout the day but I am not that thirsty so it is hard. I sort of have to remind myself to. I cooled off for a bit then when I was, I decided I was going to take a shower and then make something to eat. I bought burgers yesterday and made an awesome one with turkey bacon and pickles. I made the same tonight, though I didn’t cook the burger too good. It was really rare. I knew I should have let it cook for a few more minutes but I was hungry. Always happens. It was really good anyway but I couldn’t finish it all.

I just finished the burger and cleaned up the kitchen a bit. I still am buzzed from the coffee so I think I am going to attempt to change my sheets. I don’t think I can take another night sleeping with just a blanket on. I need to put a lidocaine patch on my thigh though. While I was at the deli in the grocery store, the guy there was lazy as he didn’t want to change the labels on the weight things. All three needed to be changed and when he realized this, he took his blessed time trying to find labels and change one weight thing. I must have been standing at the counter for at least 20 minutes while this was happening. When I went to the bus stop and finally sat while waiting, my thigh pain was so damn bad. It flared up again while I was showering. I am not fucking happy about this. My back has been acting up for most of the day while doing shit. Resting has helped but it is still sore. I really want to change my sheets but think I will have my mother put at least two lido patches on my back so I can get things done. Otherwise tomorrow I may not be able to move.

Sox are finally playing tonight. I HATE the All Star break. They were off four fricken days. I missed baseball so much, well Sox baseball. Tonight they are playing the Dodgers, the team we won the World Series to. I feel like tonight will be revenge and I am not looking forward to that. Game is in an hour so if I want to do the last two things of the day, I better sign off now. Till next time.

Pit of Doom

by Midnight Demon, posted in Bipolar Disorder, blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, suicide

Pit of doom

I didn’t think it was that long a period between blogs but I guess I am writing every 4 days or so. I don’t like it but some days it is so hard to get my thoughts together. I am missing the hell out of my psychiatrist even though it has only been two weeks since I last saw her. We have been keeping in touch through email but it isn’t the same thing. I went through the email communication while she was out during her hip surgery and it was torture. I didn’t see her for about 3 to 4 months while she was recovering. I seem to be emailing her at least twice a day, more if there is a response. I just miss her so much.

In the meantime, my mood has blackened. The suicidal mood that I was in in April seems to have returned. It isn’t quite as deep as it was then, but it is slowly getting worse. I am 100% sure the stress of being home and arguing with family nearly every day or every other has significantly contributed. I honestly don’t feel like I am wanted yet I am expected to do things even though my pain is through the roof. Sunday my youngest sister, who I thought was on my side, came up and put my clothes in the bin it was on top of, all without asking first. I did not want them in the bin because I do not want them smelling like plastic. She said she would throw in some dryer sheets. I got so pissed. I sarcastically thanked her and said it is going to hurt my back bending to get my clothes. She said I was being mean and to use my knees. Then she tells me to live my life, storms back up here and puts my clothes that were in a neat pile before, out of the bin in a messy fashion. I was in tears the whole fucking day as my pain just went through the fucking roof I was so upset. Later that night she calls me and I didn’t answer. She calls me a baby and tells me to be an adult. I say you tell me to live my life then call me a baby? Then she goes on about how living in a “mess” is unhealthy. I say I am not dead yet, nor have I been seriously ill. She then calls me selfish and I say good night. We haven’t spoken since. Last night they were having another argument with my mother, and again my fucking middle sister said to my mother “she wasn’t getting younger”. I have no fucking idea why the hell she is obsessed with age. She is 11 months younger than me and says she is old. WTF. I don’t get it. I do not like the fact they have my mother’s bedroom at the far end of the house while every one else is not near her. Something happens to her, we aren’t going to know till morning. How the fuck is that fair. Her sugar was low Saturday night and she came in my room. I was up because I had used the bathroom and couldn’t go back to sleep. She is supposed to navigate with a low sugar to get help or to the kitchen?? Obviously they didn’t plan this out or think this through.

Last night I was in a dark mood. I wrote a draft of what I wanted to say to my psych. Then sent off another email around midnight as I was in so much pain with my back and ankle I couldn’t sleep and was thinking of ending it. I have been slowly doing stuff in my room and it is costing me big time. I bought 6 bins to put my stuff in. I wanted to do stuff yesterday but all I got done was making space for one bin when I wanted to clear my bed so I could change the sheets. I had spilled Gatorade on the bedding so they need to be changed. I wanted to get it done today but I needed a shower, something to eat, and to pick up my meds. I actually had to go to the pharmacy twice because I forgot my ID at home. By the time I came back the second trip, I could barely make it home. I was sweating profusely, back and ankle kicked up two houses from mine, and I was kind of wishing I was fucking dead at that point. I had to change my shirt again. I wanted to jump into a cool shower but I don’t have the energy. Changing my sheets might have to happen Friday, if I don’t have to go to another pharmacy for my pain meds. Maybe I will go to a different chain this time. This new pharmacy always has problems with my meds every month since the other one closed. I am sick of it.

Back is so flared up my scar is hurting. I had to email my pcp to see if he knew of anything to help. He said maybe lidocaine. I have some lido patches so have been using that at night. It has been helping the pain but not the inflammation. I can’t use ibuprofen anymore because I have been getting flares of gastritis. I am on a PPI so I shouldn’t be getting the gastritis and having to use an antacid to settle my stomach. I switched from morning to evening and that has helped. I still don’t want to risk rocking the boat so am avoiding the ibuprofen. I just been taking Tylenol. Some times the pain med helps if the pain is severe enough but it is mostly muscle pain. I know I need to rest it but I got so much shit to do in my room. I thought every other day would be okay but nope. Just makes the pain worse and then I am out of commission for a week. I am just resting the rest of today. I had made a breakfast burrito so that should last me all day. I stayed in my room all day yesterday to avoid family. I didn’t go down to eat at all. I was going to when they had the meeting with my mother. I feel like my sisters are ganging up on my mother and I. All I had to eat yesterday was a protein bar and half cup of coffee. Think I might have had another protein bar before bed but my stomach was killing me so I don’t remember. I lost eight pounds in a week because of the stress. I either had no appetite or just didn’t feel like eating. I think last night’s stomach pains was hunger pains.

I am holding off on sending the draft to my psych. I have a tentative date I want to end things. I really don’t see the point of going on with the ongoing stress at home. I am trying to hold on to what she said of what I have to give to the world. A person on Twitter that I do not know had said the same thing. She had followed me for a while and said somethings that really made me think I mattered in what I say in my tweets, even if I don’t get likes or comments on them. A follower I know through the red sox said she found the courage to share her pain issues on Twitter because of what I write. It is so damn hard to continue living when you want to die yet know people out there, many you don’t know but know of you ether online or through social media, want you to go on despite you having no desire to.

Tuesday is Broken

by Midnight Demon, posted in Bipolar Disorder, blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Tuesday’s Broken

I was feeling pretty crappy today. Back pain was really bad and I just felt really, really down and worthless. I posted how I felt and someone responded with how I help people with how I feel with my posts and raw emotions. After I asked her if I could share her response and she said I could. I posted it on my IG and FB. I also sent a screen shot of it to my psych as she told me the things this person said, maybe not the way she said it, but the sentiment is the same. While I was thinking of all of this, Sugarland’s song, Tuesday is Broken popped into my head. I couldn’t find a more fitting song in that moment.

Last night I was transferring Gatorade from one bottle to another and ended up spilling it on my bedding. My back was hurting terribly so I wasn’t going to do it right then. I was cold because of the AC so I got some blankets and covered myself with those. The back pain didn’t ease up. When I woke up this morning to take my morning meds, I accidently doubled my dose of breakthrough meds and that made me very sleepy. I have been sleeping on and off all afternoon. I had sent my psych an email around 4 am saying I was worthless. I half expected her to call me but she didn’t. I also told her how suicidal I was feeling because my ankle and foot were no longer dissociating. I was getting crazy thoughts and wanted to go through with them so bad. I emailed her instead and that kind of lifted my load a bit. I have not heard from her at all. I hope she is getting my emails and they aren’t in cyber space somewhere. I haven’t been getting a “could not deliver” message so that is good. I think I have emailed her nearly every day this week. Been trying not to and the more I try, the more I fail. I just send her one email a day unless I am having a hard time, like I was last night. I honestly don’t remember being up at 4 but I must have because that is the time I sent the email. I think I also shut the AC off because of being cold. Today has been really hot that the AC is making my room cold but not an ice box. It is so fricken muggy in the house.

I made an egg burrito for the first time in ages. It was good. I put picante sauce in it before I rolled it up. I found that was better than spooning it onto it with each bite. I might make another tomorrow. I bought the flour tortillas. I have been eating them with chili. I fell in love with a Hormel chunky kind with beans. It has a little bit of a kick to it as my nose always runs when I eat it. I really want to make my cookies but it has been so fricken hot that I don’t want to be in my kitchen at all. Maybe I can convince my sisters to install a wall unit and shush my mother about it. It just makes cooking so hard in the summer.

I was still feeling a little sick after I ate. I think it was because of the pain meds. I took a Zofran so I wouldn’t hurl the contents of my stomach. I had coffee. I wanted another cup but my shirt was soaked with sweat and I didn’t want to stay in the kitchen anymore. The testosterone has so increased my sweating. I hate that I have to wear deodorant all the time now because otherwise, I stink within minutes in this heat, even if I just came out of the shower. I really hate that I have to put off top surgery until the construction is done. I am starting to look stupid because I have facial hair and female boobs. I so hate the things on my chest. I hate them more and more every single day. I think that is why I have been feeling such loathing and worthlessness. I have no idea how to counteract the gender dysphoria. I have been shaving again. I had wanted to stop to see what grew but my nephew said that if I keep shaving it will grow faster so I am doing that. There is one slight problem…I like having a smooth face so I am not sure growing a beard, even though I really want one, is going to be possible. I could just grow it and see how it feels and then if I don’t like it, shave it off. I am not going to let it grow crazy like my nephew does. I can’t stand when men do that. It just drives me crazy. I like when it is neat. Maybe it is just me.

The good news is that because I rested and took meds, my back isn’t hurting me as much. It could have flared up because the thunderstorms were passing through and the pressure changes set it off as well. Either way, I am just glad I can move without pain again. My foot is killing me but that is a constant thing that will never go away. I just hope it doesn’t make me suicidal again like it did last night. Pain had jumped from a 12 to a 15 to a 17 within a few hours. I am really exhausted from it, even though I really haven’t done much today. Tomorrow I want to take down the recycling in my room as it has been growing. I just got some study money for Amazon so I might order the bins I was looking at. I was planning on getting four but I might get six. I was going to buy another foam topper that DOESN’T fucking move but I am too afraid it is going to make me hot because of the gel. I also don’t have a place I can spread it out on for 24 hours. I might sleep in the recliner in the living room if I do get it. It has to air out for that long in order for it to “set.” It is also summer so being in the living room right now would totally fucking suck because it will be hot as hell and I won’t be able to sleep. I am completely heat intolerant because of the nerve injury and T. I might hold off till after the construction so I can maybe place it in the dining room floor for 24 hours and then carry it up to my room. I just hope it doesn’t sell out by then because I will be pissed!

Feeling anxious again so I took my pulse. It dropped 5 points since I last took it. It has been steadily dropping today. After I ate it went up to 89, then went down to 63 and now it is 58. It will probably get lower as the night goes on. I have no idea why my pulse drops when I am in pain. My blood pressure is good; I don’t get hypotensive or hypertensive. I just hate feeling fearful for no reason. I hope tomorrow I can do some more stuff around my room, like putting more clothes in the drawers that I cleared out. Or maybe just put my PJs in there so I know where they are, if I remember LOL. I also had trouble peeing today because I forgot to take my urine retention pill. I was having bad bladder pains and spasms. I was wondering why and then I realized I hadn’t peed since the morning. I wasn’t getting the urge to go because that fucking connection seems to want to work when it wants to work, not when it is supposed to thanks to Cauda Equina Syndrome. My sister was yelling at my mother for something so I didn’t want to go downstairs. I hate that I am walking on eggshells in my own house again because of the bitch bully.

Writing difficulties and dealing with shit

by Midnight Demon, posted in Bipolar Disorder, blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Writing difficulties and dealing with shit

***warning long read***

I have been having trouble writing my blogs. I have been going through some turmoil about my psych leaving. I have been in contact her with email but it isn’t the same. I feel like I lost a parent. Because of this, I have lost my words. Past few days, I have not been able to write because even though there is stuff to write about, I just can’t get it. It is really difficult. Before I left seeing my psych we talked about my writing and writing in general. I half want to send her a message telling her I have been having difficulty writing since she left but not sure that is appropriate as I don’t want to make it seem like her leaving is the reason I cannot write. I am so mad at the place she and I worked at because they forced out for obviously different reasons. I think this anger is what is getting in the way of my writing. She wants me to continue my care there. And frankly, I really don’t want to leave as I finally found a doctor that can work with me and has a good team that cares. That is rare to find these days.

Day before yesterday (the 2nd), I had my appointment with my TG doc (transgender). We discussed how things were going and I am pleased with the results. I sort of have a hair explosion which I knew was going to happen but damn, my legs are really hairy now. She told me that T can cause increase in sweating and OMG that hit me like a ton of bricks. I sweat really bad anyway because of my nerve injury and now it is worse. The weather has been really muggy and hot and because of the sweating, I had to go through like 3 shirts in one day over a couple of days. I couldn’t understand why I was so damn hot and now I realize it is because of hormones adding to my already messed up temperature settings. I asked her if she was going to increase the T dose and she said no because my testosterone blood level is in the “male” range. I had my blood drawn yesterday and I guess I made the cut off for running hormones as my T result came back. It was nearly double what it was in Jan. Holy crap. I looked up the normal range for males and I am close to being in the middle of it. So I will stay on the dose. My hematocrit has increased though my energy levels haven’t. Hematocrit levels shows if you are anemic or not. I was always in the 30s range. Now I am in the 40s. Thing is my numbers have steadily increased and she told me that she doesn’t want my blood to become viscous due to increase in blood production in the bone marrow. I am fine with the dose as it is. She also said that it is a time process so the longer I am taking the T, the more it will build up in my system. I felt good about that but also am a little impatient!

Before I started my blog, I had a chat with my nephew. I am so glad I can talk to him about men stuff. I had asked him about the facial hair and he said that shaving it will make it grow faster. I had wanted to hold off shaving the rest of the month to see what will grow as the fuzz around my face is becoming more noticeable but is not really dark enough yet. It is there but kind of faded. So when I take a shower today, I will shave. I might trim my sideburns a little bit. They are now past my earlobes so it will be only a matter of time before the rest fills in. One day I really want to go downstairs with facial hair just to freak my mother out. She has not been accepting of transgendered people. My brother in law’s nephew is trans and there was a period of time where we didn’t see him. When we did, he had almost a full beard and my mother exclaimed, “what the hell is on your face?!” I nearly died from embarrassment and also felt the sting of it because I knew then she would not accept me when I did grow a beard or when I came out to her. I was right about it and it still hurts. I have tried talking to her about it but she is adamant that she is “accepting.” When I was in the hospital, I had asked her during my last weekend there when is she going to accept me. Her response was in a strained voice as she said “she has accepted since I was born.” The other stuff we talked about I knew was making it uncomfortable for her. I can pick up things, I always have as I have been empathic and sensitive. We haven’t talked about it since, though she is trying to use my pronouns and name more, unlike my sister that moved in. She has yet to call me a him/he and will call me my birthname. I am glad my youngest sister is more accepting but if she messes up, she will correct herself. I am not sure if my brother in law knows I am or not. I haven’t told him and I am not sure my sister (youngest) has either. The kids (nieces and nephew) have been more accepting and I think knew before I came out to them. It has been a process for everyone. My online friends have been the most accepting and supportive. They really like the transition photos as they can see the changes. I had recently done a ten week transition post and even then you can see a change. I really don’t like my day 1 pic anymore. But I think that has more to do with me hating myself and being uncomfortable with myself for basically two reasons: I am not congruent to what I am and that my father called me ugly and fat my whole life. I do think I am ugly and obviously I am fat. The TG had the “weight talk” with me. Even though I had lost 12 pounds since I last saw her and I told her it was because of me not eating, she still wants me to lose more. I have no idea why doctors feel they have to say the obvious. I cannot stand it because it makes me feel more ashamed of myself.

I had appointments all week. Today and the rest of the week I am not doing anything. My legs are so sore from everything. Monday when I went to PT things looked good. I have two sessions left and then I will “graduate.” I have been going for nearly six months trying to get my right (good) ankle/foot stronger. I don’t think I can get the calf to loosen. It has been the most aggravating part over the course of treatment. Every time I try to stretch, I hurt the next day in a big way. I pretty much have given up on it. I have also given up on trying to get my balance better only because I need to be standing and my CRPS foot/ankle doesn’t like it. It can trigger a flare. Tues after I saw my TG doc, I had a flare and for the first time, a few hours later, I dissociated. I felt like I didn’t have a foot/ankle anymore and the pain was not there. It was very fucking weird. This lasted until this morning when I woke up at 2 am because of back and hip pain. I have gotten into this habit while sleeping to twist my upper body is one way and my pelvis/hip is the opposite. I had some pain that was about an 8 so I took my breakthrough meds and some Neurontin. When I was having difficulty going back to sleep, I took some melatonin. I now have a hangover from it but that is what coffee is for. I still don’t have mega pain and this worries me. I had emailed my psych about this but never got a response about it.

Yesterday I saw my eye doctor, which I am not going back to again. She didn’t really help me and I feel like she didn’t get what I was telling her as I really couldn’t see the letters out of my right eye clearly. No matter how I told her that, she just kept adjusting the lenses on the thing and nothing worked. Then she went to the other eye. After that she just said my prescription changed a little. I was like WTF. How the hell could it have changed a little when I cannot see out of my right eye from far away??? I had gone to see her not only for a regular eye exam but also due to my having double vision. I had told my psych as I thought it might be the Lamictal and she said it is. I needed to be under supervision to taper down the dose so she is trying to speed up seeing another psychiatrist. But after the exam, it turns out that my right eye is “lazy” meaning the muscles are weak and get worse when I am tired, hence the double vision. The problem is not problematic enough for me to have a prism in my eyeglasses, but if it gets worse, I will need it. I feel like I might need it now as I could not see just one frame the whole time she was trying to get me to see one. I kept on seeing two or the corner or half of the other frame. Again, she did not listen to me and just went on with her business. I will be seeing my mother’s eye doctor. He is an ophthalmologist which is what I sort of need. My mother confused me because she said a “nurse” did the eye exam and then he went over what they did to okay it. I tried to get more information out of her but she doesn’t know who the person is that is testing her vision. She never asks the questions just goes along with it. I am sure if the doctor said that if she jumped off a bridge would help her, she would. So now I got to get another eye exam, which needs to be on Medicare, not my eye insurance. I am not sure Medicare covers eye exams. I know the insurance that I have does but they will not cover it because I have Medicare. I am so annoyed at this. I won’t be getting new glasses until I get another eye exam. I want to make sure the prescription is right and won’t cause my eyes to strain or get tired while reading on my phone or while I am on the computer or even looking at something far away like a street sign or something. I have always known my right eye has been weak but hell, least listen to me when I say I cannot see the letters!

After the appointment, I sent an email to my psych telling her the double vision was likely not due to the Lamictal but having the lazy eye problem. I never got a response back. I then emailed her about still being in a dissociated state. I wish she would have responded but she didn’t. I miss her and it has only been a week since I last saw her.

I guess that is all. I might do a weekly blog if I don’t write every day or every other day, like I am doing now. I know it is long and I apologize. I just wanted to write how things are going for me. It has been a real struggle and my pain has not helped my suicidality. I still have my plan and I know one day I will go through with it. Just not now.