heartbreaking day

Heartbreaking day

I left my house a half hour earlier than I wanted to because I just couldn’t sit around waiting for the bus after I shaved and brushed my teeth. I won’t be shaving the sides and back of my head anymore as I fucked up the back and sides top hair. The razor got too close. So now I will let it grow out. I might let my facial hair grow to, though my mustache is taking forever right now. I wanted to get my eyeglasses today.

I got to Boston around 1 and by 130 I was done. I only bought sunglasses as that was a priority. I was then told my insurance only covered one pair of glasses per year. Fuck. That would mean my glasses would be out of pocket and run at least $300 minimum. I might have to use the online sites to get them. I can usually get them for around $80 or so. I think I am going to try another place than the one I used before, only because the glasses need to be adjusted, though I don’t know what my pupil distance is. I don’t know if I still have the measurements from the last time I ordered. Will have to look.

I then went to the hospital and had something to eat at the café. I already had my Starbucks and didn’t need more caffeine. After eating, I pulled out my journal to write as I had an hour to kill before my pcp appointment. About twenty minutes later I get a phone call with the hospital number. I answer and it’s the psych department wanting to schedule an appointment with the new psych. I swear my heart took a dive and stayed there the rest of the afternoon. I almost lost it after setting up the appointment. I had to see my pcp in like twenty minutes and I couldn’t have an ugly cry breakdown. I stuffed the feelings and then got anxiety really bad. I think my heart rate dropped because after walking to the office and going up some stairs by heartrate was only 65. It should have been higher. My pcp and I talked about pain meds and he wanted to change it to something else, but he didn’t know how to do it. He is going to send me to a pain clinic west of Boston where I see my neurologist. He asked if this was okay and at the time I agreed. I got my meds refilled and then set up another appointment to see him in a few months.

As I was walking to the train station, the anxiety got worse. I didn’t have my meds on me as I didn’t wear the jeans shorts. It was too hot out. I listened to music, I didn’t care what kind at that point; nothing was going to calm me down. I got to the Square to wait for the bus home when it grew dark. T-storms were going to happen and I was going to get caught in it. Sure enough by the time the bus got to the main road where I get off at my stop, the skies opened up. The downpour was sort of refreshing but freaking cold. It came down so hard and fast streets were flooded. I must have walk into at least half a foot of water as my street is at the end of a hill. It was fun walking in the rain but at the same time, not so great for my ankle as it was kind of unsteady with water in my shoe with the AFO and the other’s laces untied. I was completely soaked by the time I got home. I was glad my niece was home as I asked her for a towel to dry off some before heading upstairs. We have ceramic tile floors and I didn’t want to go flying. I am glad my sister was home to get me a change of clothes. I dried off and then put my wet clothes in the dryer. I then got to my room to turn the AC on because even though I dried off, I was sweating a lot. The temp dropped 20 degrees but the humidity went up to 83%. After I cooled a little, I went back downstairs to put my sneakers in the dryer and get my portable charger out of the bag so the wetness didn’t ruin it. I had to charge it anyway.

With all the ruckus of the storm, my anxiety went away but it came back like an hour later. My heart rate was in the 70s so that was good. I thought it might be because I was hungry so had a protein bar. My ankle acted up so I didn’t want to go downstairs. I was kind of hungry but didn’t know what to eat. I didn’t want to cook anything. I still had the breakfast burritos but didn’t feel like having one. Those were for my really bad days. I had some pita chips and called it a meal. By the time I came back to my room, the pain had gone up considerably. I became suicidal instantly and finally made up my mind about it. I had always given myself dates that were a long time away and I had enough. So I may or may not go through with it soon. Guess it will all depend on how I feel that day and where I do want to end it. I am trying to stay so I can see my psych again but I just can’t anymore. The pain is too great and from what I read about the medication my pcp wants to try me on, I just can’t deal with both physical and mental pain at the same time. My heart is broken since I said a temporary goodbye with my psych and I hate having to continue my care at the place she was forced out of. I met her when I was a teen so she is a child psychiatrist. The new psych specializes in geriatric psychiatry. I have gone from one end of the spectrum to the other. I emailed my psych this but didn’t get a response. Also emailed her about what my pcp wants to do with my pain management, which isn’t going to be anytime soon. After 28 years of dealing with my mental illness, I have to call it quits. Monday I had to go to the ER to rule out cauda equina again because of my bladder issues and severe back pain. My degenerative disc disease has gone from mild to moderate and nothing can be done about it. So in addition to being in pain in one shape or other, what the fuck do I have to live for and why?

drunk me

Drunk me

This song has been in my head all fricken day. I haven’t heard it in a few weeks but damn these songs. The song is by Mitchell Tenpenny and called Drunk Me. Song just has been going around and around my head so I am sharing it.

I went out with friends today. I was kind of weary about it because I didn’t sleep really well last night. I don’t think I will be taking melatonin anymore. I seem to sleep every two hours when I take it. It just doesn’t seem to work like it did. I was able to get a solid 4-5 hours when I went back to sleep around 0630. I had a worrisome night while I was up from 0100 to the time I went to sleep around 0630. I figured as I couldn’t sleep, I would play on my laptop. I went to get up and sort of felt like water shooting out of me. I got the laptop and soon as I sat up, I had to pee. When I got to the bathroom, my underwear was wet so that water was obviously pee. I have never lost control like that, ever. Throw in the really bad back pain I had Friday and I was starting to worry one of my discs was going. I still have a sore back. It isn’t painful unless I press on it but I still feel the soreness. I have been fretting all day. I emailed my psych. I had to because she is the one person I can talk to about this, in greater detail, to vent off my feelings. This has set off my PTSD big time. I am really anxious, having thoughts/memories intrude, thinking I should contact my neurosurgeon, how I was in the hosp, all of it is flooding back and I am ready to lose my shit. I really, really hope it is just muscle but just for a peace of mind, I want my PCP to order a lumbar MRI with contrast. I really hope cauda equina syndrome (CES) isn’t happening. This is what went on when I got it the second time.

I am trying to think of how I am going to relate this to my pcp. I got to discuss with him my breakthrough meds. I think I need an increase in number of pills a day as what I am taking isn’t always working out for me. There are days I don’t need it or I just need one pill but lately, unless I am in bed the whole fucking day, I need something for pain while doing things. Otherwise, I can’t move, at all. The second thing will be my back thing. I am so nervous but luckily my doc is a calm person who I can talk to. He is very caring and I really like that about him. He has been receptive to what I say to him. I am hoping he can order the MRI without any problems. I really don’t think PT will help me if a disc is compressing a nerve root or something. God just talking about this is giving me an anxiety attack. I gave myself one earlier today, one in which I nearly thought of going to the ER after I had dinner with my friends. But I knew that the ER would go by the book and not take pieces of CES as being CES. The one thing I don’t know about my PCP is his knowledge of this syndrome. I can educate but dammit, I am so tired of doing so. I feel like every doctor/nurse I see I have to tell them what I have and what is affected and how. Which is why I didn’t go to the ER today.

I just messaged my psych as I need a voice of reason right now, and someone that understands what I am going through. I have my support group, who are phenomenal but I need a voice who will calm me down. I hate being this anxious. And having these symptoms of PTSD is not helping matters either. I used to know how to calm myself when I got triggered and such but have forgotten as it has been so damn long. Everything happening at once is going to kill me. And I know if I have CESx3, I am dead. I won’t go through with surgery just to be around family that doesn’t want to help me out or just do things their way without my input. God it will take all I have to get through tonight with my crazy thoughts. My psych said to call her tomorrow so I will when I get home after my eye appointment.

Trans issues 27.7.19

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.

random psych shit and things

Random psych shit and things

I had three hours sleep last night. I didn’t go to bed till 0730, woke up at 0930 and then again at 1030. I had to really get up at that hour because I had to be out of the house by the latest 1105 to catch the bus. Course I go downstairs, hoping to shave and my mother is in the bathroom wanting to wash up. Figures. I tell her I need to wash up and she says she will do so fast. She is never “fast.” I waited for her to get out. By that time it was around 1045 and I just brushed my teeth and got the eye crud out of my eyes by washing them. I couldn’t be bothered with the rest of my face. It would have to wait.

I had time to fiddle after using the bathroom, but not much. I got my clothes on before sitting on my bed. I tried to find a belt I could use for the pair of shorts I found in my drawer. They are a size 38, which after all the weight loss, I fit into again. I didn’t need to buy another pair of shorts as the size 42 is way too big on me. Not eating is not how I wanted to lose the weight but it happened so there isn’t much I can do except to keep it off, which I have and knew I would. I might have gained and lost the same three pounds the past few weeks but then I will drop 8 lbs the following week so I guess it evens out eventually.

I went to Starbucks and had my espresso. I had a new barista. I asked him for soy and all the baristas that I ever had have given me the container or a quart of it. This one pours a tall cup and hands it to me. WTF. I don’t care, I just want my fucking espresso. He was cheap with the ice so I just said fuck it. He looked to be a smartass anyway and I wasn’t in the mood to argue. I totally got my time messed up because around noon, I left for the station. It wasn’t until I was halfway to where I needed to be, I realized my appointment was at 1345. I was more than an hour early. Goddamn it. I went to the lobby of the building and just wrote in my journal. Then I washed out my reuseable cup and went upstairs. The therapist took me early. I was beyond tired by that point and wasn’t too chatty though I did try to have a conversation. The therapist kept on looking at her computer screen and then looked at me so fast I thought she was going to get whiplash. No idea what she was looking at. Somehow she asked me if I was in crisis or something and I said I don’t know, not right now. Could change in 24 hours, which it could. She said that wasn’t reassuring. Then she said “we need to monitor how you are and such.” I am thinking ok. Next thing I know she is telling me she is off next week and she will see me in two weeks. WTF seriously?? She didn’t offer a safety plan or who I was to call if I needed to talk to someone while she was away, nothing! I got pissed off. Because she took me early meant I would be home on time for my psych to call me.

I had just missed the bus when I got back to the Square. I had to wait a half hour for the next one. I just listened to my music. I tried to read Twitter but my eyes couldn’t focus and it was really difficult as the sunglasses I was wearing weren’t prescription. I have either thrown them out or they are somewhere hidden in my room. I won’t know until I try to find something else. Like today I was trying to find the key to my cash box and found my class ring instead. I thought I had lost it for good while I was working in the lab. I could have sworn it was in my lab coat that got thrown away. I am glad I was wrong. That made my day until my psych called me. We talked and then she said she had a question for me, would I be okay to see a psychiatrist they had assigned me. That psychiatrist contacted her and wanted her input before they contacted me. I then asked her ok until she sets up shop somewhere and when that would be. She said sometime in the fall. She then asked if I was okay with meds. I said I have one refill left on all of them so would be set for the next month, month and a half. And if I couldn’t see the guy, I would call her. I told her about the dissociation part of Monday/Tuesday night where I somehow scratched my wrist. There were a few marks. I have no idea what time it was, what it was with, or why I did it. I don’t even remember doing it. She said if it happened again to call her right away. My immediate thought was that could be a while as it took me all day to realize this when I emailed her around 2200 Tuesday night while waiting for the last survey for the study I am in to come through. I was going to sleep afterwards and I did until like 9 or 10 am. My psych said she would call me either tomorrow or Monday to let me know what the new guy said and what his availability is.

After the phone call, my heart dropped. I was completely hurting and heartbroken and angry. I almost had a meltdown but somehow prevented me from uncontrollable sobbing. Fall seems like forever right now even though, technically, it is only a few months away. She didn’t tell me where she would be. I didn’t ask. I was too stunned to know I was actually going to see a new psychiatrist after twenty-six years, least for a little while. She still wants me to keep her posted and stuff. I don’t think that will ever change. I’ve always have, even when she was away on vacation or out of the office or on medical leave. This week has been a blur and today just sucked totally. Once I knew I wasn’t going to fall apart, I made myself a cheeseburger, which my stomach is still not happy about, even though I liked it. It was really good. After I ate, I shaved my head and face. I got rid of the mustache as it was all uneven and hairs were longer in places than others. I looked in the mirror afterwards and I looked like I was 12. I sent the pic to my psych saying I was indeed 12, LOL. My face has slimmed up and with the facial hair gone, you can really see it. Losing around 25 pounds helps. I still can’t believe I lost that much weight in such a short period. My waist shows it though. I am not 100% sure it is the T giving me the loss of weight or the loss of appetite/not eating due to pain, or the combo. We may never know. All I hear is that people gain weight with T. I might be the exception.

Now I just wait for a stranger to call me or his secretary to schedule an appointment. Not sure if my psych is still wanting to keep tabs on me now or if she just wants me to keep her posted on things. I guess I will find out when she calls me.