Category: physical pain

Trans issues 27.7.19

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, CES, Chronic pain, chronic physical pain, CRPS, depression, disability, grief, mental illness, mood disorders, painsomnia, physical pain, transgender

I can’t wait for top surgery. Things on chest are giving me such a hard time. I feel so ugly and humiliated. This isn’t me when I see them.

Kind of worried with the CRPS on left side. That is the side my left ankle is affected. The way they described how they cut the nerve to the nipple makes me nervous. I could lose feeling but that isn’t a major concern for me. I just want the fucking things off!! The right one might be more of a problem as it is bigger. Swear I have an orange on left and a small watermelon on right. And fuckers are heavy. But it might be that I just hate them so damn much. Worst part is they have become hairy which really bothers me. Becoming a man is so hard. Makes you feel really fucked because you aren’t congruent with how you feel.

The major thing is getting these things off. I would tomorrow if I could but I am being “selfish” waiting for the damn construction of the house to start and finish. I thought it would at least be started but it hasn’t. I haven’t asked my sister for fear of another argument. Been doing small stuff in my room as it is all I can handle.

Yesterday just putting groceries away flared my back up. It really scared me as I couldn’t touch my back without it hurting. I haven’t had that bad of pain since getting cauda equina syndrome x2. I have no red flag symptoms but I didn’t last time. I lost function of my bladder today. Things with it have been messed up since the middle of May. I moved to sit up and reached for my laptop which wasn’t too far from my grasp when urine squirted out. Luckily it wasn’t too much, but freaked me out. That was how I got CES (cauda equina syndrome) the second time. I had severe back pain and then started leaking more than I usually do. The disc was a different level than the first. And according to the surgeon it was huge. He had no idea how I was still walking. Been having intrusive memories most of the night and right now as I am describing it. I’ve never really talked about how I felt about it. I knew what I had and just focused on getting better, making sure I didn’t do what I did the first time, which was basically not having a clue what to do or who to see. I didn’t go to Spaulding, which is a huge rehab hospital because I’ve dealt with their lab and just thought all the people there didn’t know what they were doing. I was wrong and I am glad I was as i got a terrific PT now for my CRPS (complex regional pain syndrome) stuff.

I hope doing all the things I’ve been doing doesn’t cause me to blow a disc that is already herniated. I have herniated discs from levels L2-S1, worse at L5-S1 and again at L2-3 where I had CES x2. My first diagnosis was at level L4-L5. I fear if I have surgery again, I might need a fusion and I’ve heard bad stories about them. No one I know has found relief from them. And the stuff I read was fusions were only to be done on the neck, not the lower vertebrae. That is why I never want to have it done. I’d rather be in pain, but if other stuff is going on like loss of bowel/bladder, weakness in lower extremity, numbness from anywhere waist down (including saddle area and sex organs), then I will consider it. But only if I have a capable surgeon one who has done them a lot of times and have had success with them. I don’t want a neurosurgeon who only does the brain or pituitary gland. The whole thing scares me.

When I was able to see my therapist again (the 16yr one), she kept on telling me I went through a trauma. I stay away from that fucking word so much. I denied it tooth and nail until I started having PTSD symptoms. To this day I cannot go near the 3rd floor of the hospital where I worked. That is where the operating rooms were. I always wanted to see them but not as a patient!

I sent my psych an email about the top surgery and how I felt about it. She will sign me off on it but I really want to have a discussion with her before she does, just to make sure I am ready and she knows I am ready. It is a huge deal and I’ve gone back and forth with it in my mind. From i am attached and what will it mean to not have them there to seeing a man’s chest and saying I want that. I want to be flat and not have these things. I tell you, when they started developing, it threw me for a fucking loop. I thought getting my menses was bad. Nope. Having things grow was not what I wanted. Then to have a mother molest you because of “concern” more than once because one was bigger than the other and sending me to see a cosmetic surgeon when I was 13, fucked with me so fucking bad. I was so embarrassed this male doctor was talking to my mother about it but it would be when I was older. I nearly wanted to fucking die on the spot. I didn’t want them to be the same, I wanted them fucking gone!! I had already started hating my mother since I was 10. This just added to it more. Makes me feel so ashamed I have them and aside from cutting them off, there is nothing else I can do. Makes me feel really depressed, like I am in this pit I can never get out of.

But none of this matters if my CRPS pain isn’t controlled better. I have a date planned to end it. I am trying so hard not to think about it as I want to see my psych again. At the same time, while the cat’s away, the mice will play keeps running through my mind.

2019May13 Misery and Insomnia Continues

by Midnight Demon, posted in Bipolar Disorder, Chronic pain, chronic physical pain, CRPS, depression, mental illness, mood disorders, painsomnia, physical pain, psychache, suicidality

2019May13 Misery and Insomnia Continues

I barely slept last night. I was up till around 0530 because my ankle decided to go up to a level 12 at midnight and stay that way most of the night. It went down to an 8 when I woke up around 10 but after I brushed my teeth, made lunch, washed my dishes, and folded my bedding, pain shot back up higher. It is now around a level 13. I am so disgusted.

I was so frustrated and had bad urges in the early morning hours. I was in such despair. I realized around 4 am that if I go in the hospital, I am not going to have my meds at my bedside. I would have to walk to the nurse’s station to get meds and then walk back to my room. Walking is not a good thing when you are in a fricken flare. So I emailed my psych this and haven’t had a response. I sent her another email asking her if she is going to force me in the hospital. I am done with messaging her today. Either she responds or she doesn’t. I told her I can talk to her tonight or tomorrow, or the rest of the week. I don’t care but I am not going in the hospital. It isn’t like being on a psych unit you have a call bell to have the nurse come to your room. And because the nurse needs to scan your wrist band to give out meds, it is just not a good situation for me.

I am fricken exhausted. Past two nights I barely slept more than 8 hours. I am running on fumes. I had coffee because I needed it. I hate this is another day of not being able to do anything in my room. I haven’t done my PT exercises and don’t care to. I have been doing the calf thing trying to get it loose. I have not used the new band for the foot exercises. I am just so frustrated I don’t want to do a damn thing. I have been doing the foot thing where I am trying to get my foot to be flat. Because my calf is tight, my foot is always bearing on my toes rather than be flat. I have been this way for years so I don’t think that is going to change. I tried it while I was on the bus and train Friday and it was killing my muscles. I am just not used to it. I try and hold it for a little longer.

My psych just responded and wants me to call her tonight or tomorrow morning. For some reason I am scared. Even though I have known her more than half my life, I always fear she will throw me in the hospital and throw the key away. I know this irrational. So I will call her later. Rather face the music today than tomorrow. I will be a nervous wreck if I wait till tomorrow morning.

To the person who commented on my blog yesterday, I hope you are feeling a little better today. I know you are probably hurting a lot. You will get through it even though it might seem impossible right now. Hope you are continuing to read my blog so you see this message.

I took some gaba to help with the pain. Not sure that was an good idea if I got to talk to my psych tonight. Last night I was a little dissociative before trying to sleep at 130am. I have been doing anything and everything I can to control the pain. It most likely is flaring due to the weather. Temp dropped about 14 degrees last night. I so cold. I had to put another blanket on my bed because I put my fleece one in my bag I was planning to take to the hosp. I still am hoping to be a free bird this week. Not sure yet. Will find out when I talk to my psych tonight. Hence why I am scared. She very insistent Friday when we met. I know she is right but I am getting upset on how it will be and it hasn’t even happened yet. A friend said to “let it work” but I am very sure she has never been in the hospital recently, or at least where I live. If I had a therapist, maybe things would be better. The social worker got back to me about the therapist situation. Unfortunately the director is in Africa for a few weeks so she doesn’t know what is going on until he is back. Wonderful. Just reinforces the notion I am a hopeless case no one wants to take on. Other might be helped but after 28 years of getting help, it hasn’t worked out yet for me.

Tales of the Midnight Demon

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

I’ve pretty much have been in a flare the whole week. It has been go go go past few days. I was supposed to rest today but I stupidly ordered my groceries to be delivered today. I had used a different app, which I will not use again because of the 20 items I ordered, 13 were delivered, 1 item was supposed to be refunded but was substituted to another similar product I don’t like. So I have 3 bottles of Starbucks dark roast coffee. I will try it. If I don’t like it, I guess I will dump it. I have no use for it and no one else like Starbucks coffee.

I did an errand after my deliveries were put away. Got annoyed with the bank my mother uses. Every single time I go, there is a problem even though my mother put my name on the account. I hate this bank so much! Then I went to pick up my meds. I had to make two trips because one was ready and the other had to be pre-authorized by my insurance.

I came home from the 2nd trip and immediately in a flare. Both times I did not wear my AFO brace. My leg, which has been acting up lately, got really painful on my walk to the pharmacy and only got worse on the way back. I was in such a flare up I couldn’t bear to listen to sounds. This meant I couldn’t distract by listening to music. I just rested in agony. I took my pain meds and some gaba. I stayed on Twitter for most of the time trying to distract. I was also on Facebook. Nothing was helping the leg pain and I knew it was from walking too much. I must have walked miles in my house, going from my room to the kitchen to the living room and back to kitchen thousands of times in the past few weeks. I am not walking correctly. I overusing my leg muscles as well using muscles to compensate for the overused muscles. Only way to remedy this is to completely stay off my leg. This is hard to do because I cannot stay in bed. If I don’t feel well I can but I need to have coffee and eat so need to go to the kitchen as well use the bathroom. Now I really need to limit going downstairs.

As I was resting and keeping track of the game, the extreme suicidal ankle pain exploded. I so overwhelmed and intense suicidal ideations occured. I wanted to end things tomorrow (today). I was thinking of emailing my psych to tell her I’ve had it but decided to call her instead. I paged her and she called me back right away. We talked and I told her how dire I was feeling. I told her I had two suicidal pains around my ankle, one worse than the other. The worst one was why I was calling. She asked if I was going to act right away. I said no. She asked if I needed to be picked up and I said the ER is not what I need right now. We talked some more about the new med changes and how it will be a few days until I know if it helps or not. One dose isn’t going to help, though it sort of did. I told her I didn’t think I was going to be around for my niece’s graduation party. She said we will take it one day at a time. Then she said I needed to call her when I got up. So before noon, I will call her, if I am up. I said I would but it is almost 3 am so is probably doubtful I will.

My foot has been doing the dystonia thing again. It is part of the reason I am still up. The area where the extreme suicidal pain is still hurts but not as bad. My foot has swelled up pretty good where it feels like it is going to burst. My veins have popped up giving my ankle a bluish hue. The ankle bone is also been hammered by unknown entity. I hate bone pain so much. I’ve taken two doses of gaba. I am contemplating taking a third. If I am still up around 4 am, I will.

Today has been such a shitty day and is not over yet. A friend wanted to give me tickets to the Sox game last night. I was in a major sensory overload flare when I was asked and I had to decline. I really hated doing so because baseball is my love. But I knew walking to the park and finding my seats and staying for a minimum of three hours would really kill me after having a nasty flare up. I made the right decision and my psych agreed with me. She was saying no, no, no which was basically doctor’s orders. I am under her clutches again and I fear I am going to burn her out. I am so suicidal and want to fucking act but like I said in my previous blog, I don’t want to do it in my room. I was thinking of doing it Friday but it is going to fucking rain again. Fucking weather. Being pissed off about this is not helping. My psych asked if I was going to act in the next few days and I told her it was a coin toss.

I honestly have no idea if I am going to survive this year. I got the impression from my psych and I think I heard her say not on her watch or something to that effect. What the fuck is wrong with me? Why can’t I fucking go through with my thoughts?? I feel like such a fucking wimp. I am so annoyed with myself. If I loathed myself before, it is 100x more.

My psych is going to try her damndest to keep me here and I don’t think pushing her away is going to work. I told her I only called her because I knew if I emailed her, she would call me. I really needed to talk to her or someone, well someone that i trusted. Right now she is the only person I do trust. I can’t risk telling someone else my dark thoughts. They will freak out and things will be bad.

I am falling asleep so will end here.

Clearing room and pain

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

I’ve been slowly making some progress in my room. I was making room so some office stuff could go in. Then I talked to my youngest sister and she said I should just be clearing my room so they could rip up my rug and fix the wall in my room that is bubbling. News to me. I know they wanted to do this but where they were to put my bedroom stuff and office stuff remains a mystery to me. Unless some of it goes in my Mother’s room while they do the stuff and then vice versa. Yes, they want to rip up my mother’s rug, too. I wouldn’t mind having linoleum. I have always hated having a rug but it was what my mother wanted, not me.

I have been talking to someone on Twitter past couple of weeks, maybe more. My moods have been volitile, not in a violent sense, but in how morbid and suicidal they can become when my chronic pain flares up, which has been awful since the stress and moving/clearing stuff has started. So me and this person talking and I’ve been telling them how suicidal I was. Last night, I was letting go of my feelings, not only talking privately but also in my Twitter feed. The person got concerned so reported me. I was pissed off, worried cops would show up at my house later this morning. I am not sure how Twitter handles such a threat. I may lose access to my account for a bit or I would get a thing of saying someone reported me and I should call a hotline. Or both these should occur as well as a wellness check by local PD. We ended up talking through stuff. I venting to her the frustrations of things but not really saying why I stressed. We go into the dynamics of suicide prevention. She suggested moved to Houston. I told them I thought of going to Menninger for treatment but they just use treatment as usual, which I am not quite sure what that is. I just know it is a 6-8 week program which may help keep some of the demons at bay. One study they did was actually successful in preventing relapse. I forget the discipline they used, but I think it was some kind of CBT. I know David Jobes had tried CAMS with suicidal persons but there was a lack of communication between study personnel and staff. Also some staff had attitudes of “they are just going to do it anyway”, which is a myth. Anyway, as moving doesn’t seem to be an option, I am unable to access the programs the Twitter person mentioned. They were still concerned for my safety and I kept reassuring them I okay. I couldn’t say it with 100% certainty but I knew I wasn’t going to do it last night. I have a baseball game I will be going to tonight and then I am to see my psych Friday. The weekend is up in the air.

I’ve been thinking of ending things for so long now. I probably should be in the hospital but I can’t for fear of what my sisters and mother will do with my stuff. My middle sister has “given” me a month to go through my stuff in the living room. My youngest wants me to go through the stuff in my bedroom. Problem is I cannot be in two places at once. Nor can I do stuff on a daily basis. My pain was through the roof just to finishing clearing 1 box in my room and then setting up my new modem. Now I just need to vacuum the area and go through my bookcase so I can get some books off the floor. I got approximately a shelf and a half, maybe more as there are some books I just want in boxes to put the newer books. I also want to get rid of my subwoofer and desktop computer to make room on my desk. I was going to part with it but have decided not to. I can put some more books on it as well as store my office supplies once I go through the drawers.

There is no doubt my mood has tanked horribly and so fast. My appetite has come back but my normal level of depression has not. I am so stressed with my sister here. She has taken over nearly every room. The kitchen is full of her stuff that there is no counter space like there was. I have no idea why she wanted to have her kitchen stuff here. We don’t need two mixers and can openers as well as towels and utensils. It is too much. And the bathroom! Omg. Her son and her have so many bathroom stuff. I know my mother and i had a lot of bathroom stuff but they have double what we have. JFC.

I need to have my eyes checked. I am not sure if my pain or exhaustion causes my eyes to become unfocused at times or my glasses just need to be updated. Although with my current “extra” money going towards my cable bill this month, I am not sure when I can afford new glasses. I have a pair of frames that I want to have the lenses but not sure they will do that at the eye place I go to or if I have to go else where for the lenses. Last time I just tried to do this, it costed me the same price as getting a frame and lenses. But I think my I insurance will cover the cost so it won’t be as expensive. I want to get the kind of lenses that repel dust and smudges, a type of oil repellent as well as anti glare. This kind is expensive but if it saves me from having to clean my lenses two, three times every day, it will be worth it. The type of frame I have I think will be better for multifocal lenses as they are bigger than what I am wearing now. I hate having to wear glasses all the time because if I don’t my eyes become unfocused and everything becomes blurred. It really hurts my eyes because I am straining them to see.

So this is the update. I wrote this on my phone so if there are typos or words missing (my phone has gotten in the habit of erasing words after I type them) please let me know so I can fix it. Thanks