Not too much to ask
I am listening to Mary Chapin Carpenter’s Not too much to ask. It was a song that she did with Joe Diffie. Joe recently passed away due to the corona virus. I always loved the song.
I had therapy this morning without coffee. She said I wasn’t catastrophizing and she wasn’t sure why. I find it funny that she thinks these things. We talked about how I have skills and use them when needed. I just didn’t know I was using skills to cope with stuff. She wanted me to take in these things for when I am not feeling well. She also wants me to think about how to cope using these skills when I am having a hard time. It was a productive session even if I blanked out towards the end. I was tired and my back was hurting me most of the day today. It just hurts to move.
I didn’t receive a call from OT and hope she doesn’t call tomorrow as I don’t want to see her anymore. I just don’t think there is anything she can do for me. I am able to do stuff. I just don’t have the stamina to do it for long. I went to the store and back and I had to take a nap. I was so exhausted. My therapist thinks that because I am recovering from surgery I don’t have the emotional bandwidth that I normally have. It makes sense. I can only recover and until my body is 90% or so, I am not going to be with it. I guess that is why I have been in a weird mood, neither depressed nor happy. If I were to name it I would say that I am content, which is what I always strive for. I don’t believe in happiness. Happiness is just a fleeting emotion like everything else. Being content is what makes me feel right. I don’t know if this is going to last but I will take it. Beats being in a depressed state.
I need to shower but my back has been in spasms most of the day. Walking to the store really strained things. I have been in a state of exhaustion since coming home. I took two naps and I am still tired. Tonight I have decided that from now on, around 7 pm I am going to blog. I want to get into a routine again and seeing as I have a shit load of time on my hands I think setting a time aside to write will give me some sort of routine. If I feel like writing during another time of day, that is okay as long as I use this time to write my blog or journal or whatever. The important thing is that I write. That will be my goal each day to write. Seems simple but it really isn’t. But you got to start somewhere.
Saturday Blog 04042020
I had a successful family meeting last night. There were about 7 of us and my sister joined. I really liked talking to them. It was good that we could do this. I have to send out an invite for another meeting next Friday. I guess this could be a regular thing. The only thing that sucked was that I was deadnamed and the wrong pronouns were used throughout the meeting. I am not sure how to correct this. I think I will correct it the next meeting. My cousin liked my sideburns and facial hair. That was unexpected.
Meeting with my psych went well. I had it on my phone and once I got the audio going we were going. It was a good meeting. We got caught up and I told her how I liked the new psychopharm as she is trans and gets things with me. It is the first time that I am in a medical specialty where I don’t feel like an outsider. She liked that I am having a good level of care and she doesn’t want to mess with it. I don’t know what that means. I still want her as my doc. She said the next time I feel like chatting to hit her up and we will have another meeting. She does want me to stay in touch with her. I can’t imagine not sending her an update on me and stuff. She means too much to me to just drop all of a sudden.
I was exhausted after the family meeting. We talked for more than an hour. It was fun though. I had taken something to calm my bladder and it worked. I took another one today and it is slowing down the frequency I use the bathroom. I don’t know if I have an infection or not. Urine is clear at times so I don’t think it is an infection though symptom wise it could be a UTI. I haven’t cathed I just been voiding because the urge has been so damn strong I don’t have time to pull out a catheter to insert it.
My sister made cinnamon buns. I had a big dinner so I haven’t had one yet. I plan on it next time I go downstairs. My sweet tooth needs a fix. My CRPS foot has been flared up the past two hours so I am not keen on going downstairs at the moment. The bones in my foot and toes are hurting really bad. I took some medicine for it. It is making me drowsy. I don’t think I am going to be up that much longer. I hope to be asleep by midnight. Just hope the bladder calms down some because running to the bathroom has sucked all day. I hate that this isn’t getting better. I could take some antibiotics and see if it goes away. I have an order for it but I never filled it because it wasn’t a definite infection. I had three different cultures and they all showed different things each time. It was really frustrating. And the UA was negative each time. Monday I will go to the hospital to drop off a specimen. I will go by T as I can’t get a ride. That is going to tire me out big time but I think I will be okay. I will try and increase my activity tomorrow to see if I can walk down the end of the block and back to my house. I need to go to the pharmacy to get my meds as well. That is going to be really taxing. I thought my meds would be ready today but they are showing that it is still being filled. I will call in the morning so I can just pick it up by the afternoon. I need the meds as I need to do my boxes for the week.
I am being overwhelmed by pain right now. I think between the PT and going up and down stairs has taxed my thigh. It could also be a reaction to the testosterone as I had the shot yesterday. Thigh has been sore since giving it. I have to inject there because I can’t keep using my right thigh. I sometimes go to the TG clinic and have the nurse give the shot if I feel like my leg can’t handle it. The good news is that it will be four weeks before I have to use my left thigh again for injections. The nerve pain always makes me think something bad is happening when it is just irritated. I hate that PTSD gets activated by pain.
My niece brought up my Gatorade bottles that I ordered. I have plenty in my room now. It should last until next month. I am scared to look at my checking account because I know I am in the red again. There was no way to avoid it this month. I just have too many expenses and not enough income. If I could work part time that would help things but I can’t work at all. Just sucks that I am limited because of my physical illness.
I have been thinking of writing to my therapist but I don’t know what to say. That partly spurred this blog. I just wanted to write my thoughts because the COVID-19 shit is getting to me. I feel like I am never going to go out again except to medical appointments and that doesn’t seem right. I want to get a latte or mocha but I don’t think Starbucks is open. A friend was having serious trouble finding one for her latte needs. Everything is still shut down and I don’t think they are going to be open for another month or so. Schools are still closed. What is pissing me off most is that these states have to bid on equipment for their state. WTF. There should not be a bidding war when it comes to a person’s life for crying out loud. This is so damn wrong I hate the greed of these people. I had to mute the conversation on Twitter because it was bothering me so much. I rarely mute current events so for me to do this, you know it is bad. I muted the words for 7 days. I am sure that there are other words that will be in place instead of COVID. I know Coronavirus will be there too. It doesn’t bother me yet. But the buffoon in chief’s mishandling of everything is really going to cost American lives. So are the states that don’t have a stay at home order, like the idiots of Florida.
I invited family for a zoom meeting and didn’t get any responses to it but then I am not sure how the thing works. It doesn’t say that so and so is going just that I invited them to join. My sister thought it was tonight but I told her it was tomorrow night at 8. She said she would download it if she remembered. Great. I have my meeting with my psych tomorrow. It will be so good to see her again. I am not sure what we will be talking about. There is a lot going on yet there isn’t. I miss baseball so damn much. Sox had wallpaper of Fenway and I took one of the left field wall. It is the scoreboard and Green Monster. There has been nothing in the news about any sports other than the billionaire Kraft giving masks to the people of Massachusetts. He used the Patriots (football) plane to deliver the items from China. That is what medical personnel need is personal protective equipment (PPE). We use them in the lab all the time so I know what the term is. I can’t imagine working without that kind of stuff. Yet today the PT was in protective gear from me because of my MRSA status. I need to get cleared of it and I am not sure how. I need to ask my PCP. He works with infectious diseases so I am sure he can get me cleared as I have had two negative nasal swabs and no infections since that stupid nurse took my urine from the bag instead of the catheter.
Back has been tight all day and now I just want to rest it. I have no appointments tomorrow except for my psych but that isn’t until evening so I don’t care. She wants this to happen and I don’t blame her. I know she is worried about me. I just hope I don’t get hungry and need to make myself something to eat like last night. I have been getting hungry at night because I am not really eating during the day. I am craving an egg sandwich right now and it will be so good to make it tomorrow. I just hope my back is up for it. I boiled eggs last night and it killed me. Course with today’s rain it didn’t help my pain.
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.