A tiring Wednesday

I managed to shower today but I was not able to trim my beard. My back has been bad today. I also been wicked tired. I still haven’t been sleeping through the night. I keep waking up because I have to use the bathroom. By the time I finish my business, I am awake and find it hard to get back to sleep, even with a dose of ativan on board. Then when I do go back to sleep, I feel sluggish and tired.

Today I had a wicked bad headache/migraine. Nothing has helped the headache and as tired as I am, I haven’t been able to sleep at all. I tried two times to take a nap and failed. I hope I can sleep tonight.

The thing that is driving me nuts is the urge to pee isn’t there throughout the day yet in the middle of the night it wakes me from a sound sleep. It is so frustrating because I have to use a timer or my med app to remind myself it has been x amount of hours and I need to cath. I’ve been doing that all day. I’m hoping that I can sleep at least six hours straight so I can function.

Tomorrow the physical therapist will be coming. I think I have like 2 more visits with her and then they will stop coming. I got to make sure I am up and awake. She called today to see if I am still MRSA precautions and I told her I was because I haven’t had the third test done to make sure I am negative. I got to talk to my pcp about this. I am hoping he can do the testing to make sure I am not MRSA anymore.

God I am so damn tired. I am going to stop here as I am drifting off. Until next time…

An idiot, I am

Pain got the best of me this morning. Early this morning I was ready to doze off finally after being up all night. Laid down and within 15 minutes, pain got worse. I had enough so I got the elixir out. I wasn’t sure how it was going to taste. I took a swig. It was peppery and I checked the ingredients to make sure it didn’t have pepper in it or my stomach was going to reject my attempt. I kept taking shots but nothing was happening. I waited an hour. Nothing. By now it was like 6 am. I maybe dozed off for an hour or two, not consecutively though. By 0700, I gave up. The stuff wasn’t causing a reaction. I was mad and pissed and a jumble of other emotions.

I texted my therapist at midnight saying I wasn’t going to see her tomorrow. She thought it was today so allowed me to cancel. Mood was all over the place. Then she texted saying she couldn’t see me because she was really sick. That was the last text I got from her. I sent her a few more but got nothing. I went about my day.

I went to see my friend at the Navy Yard. We chatted for a few before he had to go back to work. I then went off for my appt with OT. We discussed the caths and stuff related. I asked her what would be best in cathing in bed and she told me it might be easier but I could get too comfortable with it that it would be the only place I would. Right now I am just planning on doing it when my ankle is 12+ level pain so I don’t have to go downstairs. I got a urinal and she showed me an type of catheter with a bag from the same company that makes the ones I use. She is going to recommend them to my uro so she can order them for me. These will be so much easier as then I don’t have to worry too much about wetting the bed with an accidental miss. Throughout the conversation I was having trouble keeping it. Concussion symptoms were in high gear today. Memory was finicky at best and my thoughts were not always on point. I would forget mid-sentence what I was saying and then totally blank out completely. Didn’t help that I sleep deprived.

After the appt, I went grocery shopping. I wanted burgers and turkey bacon. 4 things and I wiped out when I got home. I wanted to nap but couldn’t. I asked my mother to make burgers. She did, almost using the two pounds of meat I bought. I told her not to use all of it because I wanted to make dirty gravy. Now I need to buy more meat, which means going out in the storm tomorrow. Fucking fuck. I am so pissed she just did what she wanted with my stuff.

The only side effect from my failed attempt is a sore throat. I haven’t officially told anyone. I feel more hopeless and useless now than i did before. I put in a call to the NP as the therapist wanted me to involve her in this. She (NP) never called me so not sure when or if she will. I texted the therapist about it. Still got no response so she must really be sick. I don’t know if she is going to figure out i duped her with appt days. I did ask saying if there was an opening to let me know. I cannot see her Thurs but will if i have to. I see the behavioral med psychologist then. I cannot see the therapist and him on the same day as insurance won’t allow it.

I really don’t want to let on I tried to end things today. I feel like I will get in trouble if I do or worse, get placed back in the hospital. I will know more tomorrow if the therapist is feeling better.

Wed morning I see the concussion specialist. I am being evaluated for a TBI, which is what a concussion is, a traumatic brain injury, though a mild one. I am having a lot of symptoms so hope they can help. I know I have been bad about screen time and resting my brain. It is so hard though doing absolutely nothing sitting in the dark. I wouldn’t mind if I was drugged out on something or maybe I just need an ativan to help me sleep while my brain recovers. I still am getting headaches and pain at the back of my head where I banged it. Short term memory is shot. I can’t remember things like i used to and i have to write stuff down. The OT suggested I have an alarm set to start being on a bladder schedule so i know when to pee. I think i am going to put it in my med app as i can order it for every 6 hours or so without disrupting the time schedule. Trick would be at night so i don’t wake up in the early morning hours just to empty my bladder. But if i should have to, i now have the urinal and obviously the caths to do it. The OT also gave me a few higher quality chux pads. That was really nice of her. Now I can order them through Amazon. I haven’t decided if I should get disposable ones or washable. The price is pretty much the same, except for washable you get 4, disposable I think is 50. If I get the washable, I won’t have to reorder them, which would be nice.

I am feeling pretty worthless about failing, again. I guess I am just not meant to die. And this bothers me so much.

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.

2019May13 Misery and Insomnia Continues

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.