Stay the fuck at home
here is a funny video about the corona virus. I find it funny. It is a wonderful message. It contains swears so it won’t be safe for work.
I waited all morning for PT to come to the house. I was getting mad that she was late and didn’t call. She had said she would be here around 10 and she didn’t come until nearly 12. My head was killing me waiting. I can’t seem to sit for too long. Back tightened up after all the exercises she gave me. She wrote them down. I don’t have to see her until next week. Thank god. I don’t want to see anyone else this week.
My cousin put me in charge of organizing a zoom meeting. So I have been sending invites. I don’t know who will come or not. We have a small family on my father’s side. I got a text from one of my cousin’s who deadnamed me. I want to respond to it but she may not know I changed my name. I don’t know if she knows I am trans either. I guess we can talk about it tomorrow when the meeting happens. I think it is just going to be a few people anyways. I can’t imagine there being a lot as it is at night.
I am in a weird mood today. I feel down and out but then I feel ok only to go back down an hour or so later. I just been trying to stay afloat with something. Twitter has been a blessing and a curse today. I am informed about the virus and also who has died from it. They are starting to list doctors who have passed from the virus. It is all sad. I can only read so much before having to switch to Facebook for a little bit. But facebook is not any better for distraction because it lists the past few days events instead of today. It is so annoying. I hate the algorithm. I spend more time hiding things to get things current than actually reading stuff.
I made coffee today. I only had one cup. It is all I really wanted. It was good with my sister’s granola bars she made. Chocolate and peanut butter with oats. It was so good. I have been wanting to make an egg sandwich but my back is too stiff today to try and cook. I made boiled eggs last night and that nearly killed me. I got to have a protein though or I get hungry.
I need to take a shower but I don’t feel like it. I feel dirty for some reason. Bladder has been off the wall today with strong urges. I feel like I just make it to the bathroom on time before it lets loose on me. I hate that I got to run to the bathroom. Just makes me feel like I don’t have control. I haven’t cathed today. I just been voiding on my own because the urge has been so strong. Yesterday was a cath day. Maybe I am going like every other day cath/void. Least my urine has been clear so I know I don’t have an infection.
Stitches are out
I had a very tiring day. I woke up with minutes to spare to catch the driver to get to the hospital. I am glad I dressed quickly. There was no traffic to the hospital so I was an hour early. I tried to get something to eat but they weren’t accepting cash so I didn’t get anything. I spent an hour in the empty waiting room waiting for the doctor. He took the stitches out and said things looked good. He said that the disc I was concerned about was compressing things so he fixed it. I don’t have to worry about it now. He did say that I had a dura tear that had to be repaired and that was why I had to lay flat. It took a good few days to be able to sit up right in bed. I still am not feeling well sitting up but I did okay on my way there. I had to walk all over because the place of pick up was at a different building than where my doctor’s office was. I am now paying for it as my foot has flared up.
I had a phone session with my psychopharm. We talked about how I was doing. She thinks part of the reason I am not so depressed is because of the anesthesia. She may be right. I don’t know how long the effect is going to be but it has been two weeks and despite feeling devastated at times, I feel okay. I told her that I was numb and I told her where. I felt funny telling her but she seemed to understand that this is complex and not something that is going to recover in a few weeks. It could be months before I have feeling back. Surgeon even said that. So I just have to take it day by day. She wants me to write more as she feels it could be a good coping mechanism. I cringed. I don’t see my writing as a coping mechanism. I just do it because it feels right. I have some things to express and I express them. They all go into a void for me and I don’t remember what I write usually. Granted right now I am not writing in despair or in a desperate state. I told her I haven’t felt suicidal but I have been hearing hallucinations of music that I have been having to take trilafon for. She asked if I had any side effects and I said my fine motor skills are affected. I can’t seem to hold a pen without shaking a bit. Writing is smooth once I start but I do tremble a little bit. I don’t know if it is anxiety or what but I hate that this is happening. I love writing in my journal and that this tremor is keeping me from writing when I need to. I also want to write to the therapist but I am not sure what to write. I will ask her when I talk to her next Monday.
My pcp messed up my pain meds so now I am behind a week with my other pain meds. He didn’t send off a 30 day supply. I now got to wait till this weekend to get it. I blame that stupid NP in the hospital for messing up the counts. I don’t know why she felt the need to give me a script when I already had a script and my doc would have done it not her. Would have been easier to do things through my pcp than through her anyways.
Surgeon asked if I was voiding and I told him I was. He asked if I could feel myself be full. I can at times but not 100% of the time. I still need to cath every day so I make sure that I am empty. Today I haven’t been voiding much on my own. I have had to cath because I just couldn’t feel full even though I know I drank enough that I should have been full. I still can’t believe this is my new life. It takes so much out of me knowing that I am not a full bodied person anymore. It kills me that this may not go away. I just worry about bowel accidents now because of feeling numb. I haven’t taken Miralax since I have been home. I keep forgetting to take it. It is hard because I don’t have a cup in my room to mix it up in. I keep forgetting to bring up a cup. I might use a water bottle for my mixing. I bought a 32 oz Gatorade bottle that I can mix my drinks in. I bought the powder to make Gatorade. I figure that might help cut down on buying the stuff. I would make a bottle now but my back is all locked up from this morning’s activities. I am really hurting. I am also so very tired despite taking a three hour nap. I just hope I am not up in pain all night because I slept during the day. I am feeling sleepy as I took my night meds an hour ago. I hope I am asleep before midnight. That would be good if I was able to sleep before midnight with no trips to the bathroom. Last night I woke up once or twice but was able to stay in bed. I didn’t have to use the bathroom. I think if I got up I probably wouldn’t have woken up at 9 like I did today.
Tomorrow PT is coming. I am not sure if nursing is going to come by or not. I usually will get a call in the morning if they are going to come by. I don’t think they need to because I saw the surgeon today and I am doing good. I am just worried about PT and what they will want me to do. I want to do what they ask of me but at the same time, I am not sure that I can do it. I forgot to ask the surgeon about it. Being fart brained didn’t help. I wish I had coffee before I left the house. It would have helped tremendously. I think I will have coffee tomorrow at my sister’s. She has a Keurig that is awesome.
I have been having trouble with the bathroom since surgery. My right butt cheek is numb and so is part of my genitalia. I thought it would have recovered by now but tonight after a bowel movement, I couldn’t feel myself at all. I knew I was touching myself but the feeling of wiping was not there. Now I know I have CES (Cauda Equina Syndrome) again and I am not happy about this. It is awful because I don’t know what kind of bowel prep I will need down the road. I am being frank about this because it is my life and now I have to deal with it. It is just complications from surgery and may go away with time but I know it will be painful. It always is. I am not looking forward to the burning pains or the other kind of neuropathic pains you get from nerve injury.
I have had a rough night and I should be sleeping but my brain is awake. I thought writing for a bit might calm it down some as it always does when I am restless. I went downstairs to my sister’s apartment for dinner and birthday cake for my brother in law. Today was his birthday. He was drunk as he was so difficult to handle. He would deny being drunk though if asked. He talked about the Orange Menance being a joke. Like we didn’t know this. It is all over the fucking news every day about him being in office is a joke. I just don’t understand why he still is there and not in jail but then I don’t want the zombie VP to be president because that would be worse.
Tonight’s discussion followed the good and bad of Jesus and the devil. My niece who is a scientist tried to intervene scientifically in the realm of things but alas was not listened to. It just came down to a matter of what your perception of god and jesus and the devil was and how good/bad a person you were. Thankfully the conversation ended there. I was feeling out of it because I still am not feeling good. I feel like shit on a platter. I did too much tonight by staying in the conversation and sitting for as long as I did. I should be out but I am still up because of this nervous energy I have. Mostly concerned that I won’t gain back my feelings again, the numb parts of myself that is new.
I have not dealt with this in some time. I was hoping it wasn’t going to happen. I am 11 days post op so I am still healing. I am just dreading it because I now have to be careful with my stomach. I have to watch what I eat and drink and take for bowel control. I fear that if I should have loose stool, I might not be able to feel it should it get loose loose. I would hate having to wear diapers again because of this. I was feeling fine until all this. Now I feel anxious and timid. I am not depressed though so that is something. I know that if I do lose my control of my bowels it will be a different matter. The loss of dignity that goes there is so great and there is no recovery from it. Some have laughed it off but only after years of dealing with it. This is still new to me and I just cannot fathom laughing this off after pooping my pants. I have a hard time even when I pee my pants, which thankfully hasn’t happened in some time due to the retention. I am still having to cath myself a few times a day. The last few hours I have been able to void on my own so I am taking that as a good sign that cathing might be a thing of the past soon. But it all depends on how things go. I know there are times I still don’t get the urge to pee. I am also waking up in the middle of the night to pee because I drink too much or my bladder just decides 3 am is a good time to use the bathroom. I hate the disruption in the night because my sleep is wonky as it is without the added bladder trips. I take anticholinergic meds at bedtime so they make me thirsty which really sucks when trying to sleep through the night. I need to talk to my urologist about this. Maybe she has some suggestions. I don’t see her until the middle of May when I have to have some testing done again to see if my bladder function has improved after surgery. The uro thinks two months is a good time to gauge it. I hope she is right but I think it will be longer. These nerves take a long time to heal and a two month time frame is too short, in my opinion.
Yesterday I was prescribe the bladder medication tolterodine. The pharmacist said to take it at supper time as that would be best so I took it when I got home as it was supper time. I have been feeling dizzy since. I am hoping with continued use the dizziness goes away. I just hope it doesn’t make my constipation worse. But wowsers, is the world spinning on me! I took my blood pressure early this morning and it was low. My pcp had said that after taking all my medications, my blood pressure could drop. Well it did. Whether the low blood pressure and dizziness are related I am not sure. I looked at side effects and apparently, nortriptyline and this med interact with some cardiac side effects. I got to watch that out. My psychopharm doesn’t want me using Zofran too often as it can lead to serotonin syndrome so fuck. All the side effects are similar so I am not sure when what is what. She gave me a list of side effects so if I get them all at once then I know it is the syndrome. I feel so taxed trying to remember everything plus keep track of my bladder and bowel movements. It is stressing me out. I plan on trying to clean my bowels up before surgery so I am not so constipated. My biggest fear though is pooping in the OR while I am under anesthesia.
My mother wanted me to go out today but I told her I wasn’t. I am not feeling up to it after my long day yesterday. I need to rest. I am still not feeling up to par from the side effects of this medication anyway. I feel so drowsy but then I was up almost 20 hours yesterday on 5 hours of sleep. I really didn’t sleep well as I kept waking up to pee. I had to set the med alarm at like 4 this morning because I didn’t want to sleep through with a full bladder. I have it set at five hours intervals, which is roughly the time it takes to cath five times a day. The uro NP wants it less than that but sometimes it is less than that because I could go every three hours or so, especially if I am drinking a lot. She wants me to increase my fluid intake by drinking 16 oz first thing when I wake up. That is half a bottle of Gatorade. I am going to go through a lot of Gatorade so I think I am going to order more next month. Just sucks that I can’t order a large quantity of the same flavor because lemon-lime is my favorite flavor. I get a warning when I am over 10 bottles. I usually order around 25 bottle and then 5-10 of a different flavor to break it up a bit.