PT is exhausting
I went to PT today and it wore me out. I started having symptoms of CSF leak and that kind of got my PT worried. She made sure that I was ok before I left and gave me two bottles of water to drink so I was hydrated. I had only drunk coffee, nothing else so I probably was a little dehydrated. I was so fatigued. I can’t even describe it. I came home and made lunch. Then I laid down. I took a nap until my med alarm went off for my 4 pm meds. I took them and went back to sleep afterwards only to wake up again to my night med alarm. I am really wiped out. I didn’t too much today but apparently, I did enough. I am supposed to go up to 400 steps a day. I will do that tomorrow.
I really haven’t done much since coming home. I made a sandwich for dinner. Someone has been eating my hamburger rolls so I need to get some more. I have been using them for my sandwiches. It is a good bread. I like it a lot. I might get some more if my bro in law goes this weekend.
I did something to my right arm. It fell asleep and it still hasn’t woken up properly. I can’t make curls as it hurt and I can’t bring my arm towards me without pain. I don’t know what I did. I hope it gets better. I would be sleeping or laying down but I had to take some Miralax. I don’t want to lay down after drinking that stuff as it could come up on me. I have had it before and it doesn’t taste good coming back up. I hate reflux. Been dealing with gas pains the past two days. It has been awful. I don’t know why I have gas so bad. It could be because I am constipated. It has been more than three days since I last went. I hate being constipated. Just another fucking thing to keep track of. I have been having a hard time keeping track of when I void. I know it had been a while because I slept and when I woke up I didn’t pee. Then I fell back to sleep and when I woke up again, I didn’t pee. I forced myself to go pee and luckily I went. I am not sure if I emptied completely but I don’t care. As long as I went I am good. I am nervous about the urodynamic testing. They will test me and I hope I can pee but sometimes my bladder is stubborn and won’t go. It also gets shy so I hope I can go and prove that there has been improvement since the surgery. I was expecting to hear from the secretary today but I didn’t hear from her. I will try and call her tomorrow. Hope that I will get through without waiting for 10 mins like last time. The wait is so long.
I read one chapter of my book. It was all I could read today. I got too anxious to read anymore. I hate when that happens. I could have read half a chapter. But with me feeling woozy, I didn’t feel like it. I will read more tomorrow.
Sunday Blog 05072020
I woke up late. I didn’t want to wake up. I took my morning meds and then went back to sleep for more than four hours. I had woken up in the middle of the night, twice, to pee so I was tired. I don’t understand why I had to wake up so damn early in the morning when I cathed before I went to bed. This annoys me to no end. I didn’t have that much to drink after I took my night meds. Drives me crazy that I have to get up in the middle of the night to pee because my kidneys work. I am grateful that they do but wish they would slack off so I can sleep.
I was hungry but didn’t feel like cooking when I got up at 1430. I made a tuna sandwich. I used my last can of tuna so my next grocery order. My cousin is taking me shopping Tues so I will pick some up then, if I remember. I have to make a list of stuff I need to get. I know I want roast beef and burgers. And steak. I can’t forget steak. I have it at least once a month.
I did my med boxes for the week. I filled up the bottles that needed it. I had been winding down the bottles for the end of the month and I finally used it all. I put the bottles in recycle. I need to take down my recycle. I would have done it yesterday but I don’t think there is space as my sister had a BBQ. I might have to put them in the end of the week after the bins are empty.
I made iced coffee when I got up at 1430. It was good. I love that my Keurig makes it. It is so easy. Just fill a mug with ice and let it pour, mix with cream and sugar. And boom. Iced coffee. So good. I like the Peet’s dark roast that I have. It is really good iced. I like it better iced than hot. I of course have my Starbucks coffee that I will make either hot or iced. Lately everything has been iced because it is too hot for hot coffee.
Tomorrow I have PT. I should be getting a call in a few hours saying what time my ride will be picking me up. Hope it isn’t too early like last week. I had to wait a half hour last time because it was so early. And I couldn’t wait in the waiting room because of social distancing. I really hope PT helps my endurance levels because it totally sucks that I can’t do anything without being short of breath. It makes me sad that I don’t have the energy I once did.
Writing Something is better than nothing
I woke up with my med alarm ringing. I didn’t know what the noise was but I wanted it to stop. It was ringing for a good ten minutes before I finally became coherent enough to shut it off. I took my meds and then went to the bathroom. I did my business then brushed my teeth. I needed caffeine if I was going to have therapy in an hour. I made a cup of tea as half and half seems to be a rare commodity these days. I need it for coffee but seeing as I didn’t have it, I made tea. It was strong and full bodied so I enjoyed my cup.
Therapy was a disaster. I didn’t feel like talking. It was too early in the fucking morning and I guess my therapist finally clued in that this time was not a good time to chat. We changed it for a later time next week on Tues. Just as well as I am not liking these virtual visits. It is so hard to think of something to say. I felt like pulling out my notebook that jotted down some stuff but wasn’t sure if she would approve. Frankly I just wanted to get back to bed. I didn’t care about anything else. I told her about the need to lay flat and that I have a leak. This recovery is taking its own sweet time. I don’t like it. It is too slow for my tastes. So naturally I got a headache today. Luckily, Tylenol took care of it. I was running a low grade temp last night that had me very worried. It didn’t go above 99.6 and ibuprofen took care of it. I have not been running anything close to 98 degrees right now. I am glad. I still feel like shit and if I do anything that requires effort, my heart rate goes nuts.
Last night my nephew was worried as I was so out of breath after I took my shower. It took me a while for me to catch my breath. My heart rate was bananas. I made up a container of water and then I made a container of Gatorade. I haven’t made one today. I should as I haven’t been drinking that much today. I will make a container when my sister leaves my house. I don’t feel like talking to her right now. I just am not in a talkative mood.
I am debating on contacting my therapist for another session this week. I feel like I should make amends to my non-talkative mood this morning. Part of me feels like she is mad at me but I know that isn’t true. I wonder if my therapist is sick of me. I always seem to go back and forth. Like I want to move forward but I rather do it two steps back to make sure I have room to fall. I’ve always done this with every therapist I’ve had. She is the first one in nearly twenty years to challenge me on my thoughts. She wants me to get better. The question is, do I want to?
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.