Tag: CES

rainy Wednesday

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Rainy Wednesday

I got up at my normal time. I don’t remember if I had breakfast or not. I think I just had a cup of tea that my friend in the UK sent me. It was delicious. I really enjoyed it. I then set off to go to the hospital to drop off a urine specimen to see if I have an infection or not. It was weird because the bus was restricted to just the rear doors. You couldn’t pay your fare as the driver was blocked off. I had my walker and it was okay getting on and off the bus. I did have to pay for the trains. I had money on my card so I wasn’t worried. I then made my way to where I had to go for the lab. I had trouble getting the urine in the cup. I didn’t ask for a hat so some of the urine went to waste as I didn’t catch it all. I was pretty tired by the time I got to the hospital but I trudged on. Getting home was easier. I was really exhausted by the time I got home. I didn’t realize how tired I was until I started dozing off and almost fell off my bed. I leaned over a little too far and nearly fell. That was when I decided to lay down for a proper nap. Soon as I got settled, the results of my test came through. It does look like I have an infection. I need to wait two days for the culture to come back. I sent a message to my uro and then I crashed for a couple of hours.

It felt good to nap as my back and ankle were screaming at me. I had taken a breakthrough med and some Zanaflex for the spasms in my back. I didn’t want to take Ativan as that would really knock me out. I won’t be going back out again, unless it is to the pharmacy to pick up my medication, when the culture comes back. I have one prescription that needs to be picked up but it can wait till tomorrow. I will pick it up after PT if I am feeling up to it. Last time PT made me really tired and I needed a nap. She is going to be here between 1030 and 11 so I need to make sure I have eaten before she gets here and also have my coffee. I haven’t heard from the OT person and hope I don’t. I think she tried calling me last night but I ignored the call. No message was left though so I don’t know if it was her or not. I didn’t receive any phone calls today.

tiring Tuesday

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Tiring Tuesday

I didn’t sleep well last night. I kept waking up to pee. I couldn’t get back to sleep after I peed. When I did, it was only for an hour or so. I had an appointment with my TG doc today. I was planning on going out but after my shower, the energy levels went south and I stayed home. The appointment was via the phone so I didn’t have to be anywhere. The appointment went well. She said my T level was low for a trough but because of my sweating and acne, she didn’t want to increase the dose. I am okay with that. She called in a new script for T and said I could see her in a year. I am to have blood work done before the appointment. I hope things are back to some kind of normal by then.

I did some journal writing this afternoon. I wanted to write about the appointment and some other stuff as it has been a while since I last wrote in it. I don’t think I wrote in it since the first week I came home from the hospital.

I took out my gravy for dinner. I didn’t know I would be the one making dinner. My mother didn’t want to make it because her back was hurting her. I nearly collapsed after the pasta was done. I am so tired right now that it is hard not to just shut off this laptop and go to sleep. I didn’t do the dishes. There was no way I was going to do that. My mother cleared the table after I finished. I was so wiped out. I used the bathroom and then went back to my room to rest. I hope I don’t have problems sleeping tonight. I also hope to stay asleep through the night. Waking up at 3 am is not fun. Just throws me off for the entire day.

Tomorrow I plan on going into Boston to give a urine specimen. I need to find out if I have an infection or not. I am glad the urge to pee has settled down some. I hope it is because of the bladder medication I have been taking. I know that this medication increases constipation and I didn’t want to take it but the uro said it could help so I am taking it. I just got to keep up with taking the other medication for the bowels. I now have to keep track of the time between voids/cathing. It is a pain in the ass. I also got to keep track of the last time I had a bowel movement. The B&Bs always needs to be in the back of my mind. I hate that I need to consciously keep track of them. Because the moment I don’t keep track, things get fucked up.

I got a get well card from a friend in the UK. She sent me a bag of Yorkshire tea so I will be having it tomorrow morning. I can’t wait to try it. I was very happy to get a card from my friend. It means so much to me. She is a very good friend. I have known her for years. If I ever get to the UK, it will be a long trip to see all of my friends that are scattered throughout the country.

not too much to ask

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

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

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

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.