Tag: writing

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.

writing vomit

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

Writing vomit

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.

Feeling like shit and crap I feel awful

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

Feeling like shit and crap I feel awful

I have been feeling weak all day. It is awful and there is nothing I can really do about it except fluids and rest. I have been trying to sleep but it hasn’t come. I am too anxious to sleep or sleep because of my med and bathroom schedule. I think once I am out for the night it will be good. I am still on steroids to calm this headache that pops up if I sit for too long. Tomorrow I need to call the surgeon as I have had some sweating on my back around the scar. It doesn’t smell horrible but the damn thing is dry otherwise so I don’t get it. Maybe I am just too hot for my own good, LOL. I just need to hold on for the next 15 hours or so when I can call the office. I don’t want to go to the ER if I don’t have to.

I asked my sister to take a pic of the scar and it looks good. No redness or swelling anywhere so this sweating is a mystery but then it could just be healing. I froze my room so am trying to warm it up again. I had opened the window the other day and had to close it as temp dropped to 39 outside and nearly 60 inside. I was cold and had to put on a long sleeve shirt. Hope that doesn’t contribute to the sweating episodes.

I have been in a weird mental state. I don’t seem depressed or suicidal and I find this somewhat disturbing that suddenly I am “fine”. I just worry about a setback. I sent a message to my therapist about it. Not sure if she read it yet. I haven’t gotten a response. I have a time tomorrow with her in the morning and I hope that I am semi awake. Our appointment last week didn’t go too well as I was out of it from meds. I still might be out of it as I feel so weak. I am trying my best to be with it but it is so damn hard. I just want to sleep but I can’t. so frustrating. I supposed if I took some Ativan or Zanaflex I would be out. Pain hasn’t been that bad today though I can’t seem to sit up straight without muscles tightening on me. The joys of recovering from back surgery. I am glad things went well and I can’t wait to talk to the surgeon about the surgery because I have yet to chat with him since before I was under. I have only seen his residents. This is partly due to the COVID-19 isolation that was going around the hospital so he wasn’t available. I am glad my pain is better but I am not liking the tightening of the muscles. I am glad I have Ativan as I think it works better than Zanaflex at times. But I might be biased. Benzos have always been good muscle relaxers. But the risk of addiction is what keeps them from being in use at times. And they are a hard drug to come off of when you want to stop them or need to stop them. Harder than anything, from what I heard. I hope I never have to find out because just missing a day and I am wicked sick with dizziness. I have been on Ativan for a while and know I have a dependence like you do most medications you take every day. I am sure if I were to stop my blood pressure meds there would be some side effects to that as well. Dependence is not the same as addiction. Addiction you need more of the stuff to achieve the high or whatever feeling you need. Dependence is when you are dependent on a substance through no fault of your own.

I just realized I haven’t done my meds for the week. I have Sunday meds so will do it tomorrow. I had planned a few days in advance just in case I wasn’t up to it. I am glad some planning worked. I have another few days of steroids that I need to fill my box with. I am taking it with Tylenol for pain. That is what they were giving me in the hospital so I am going with it. I will do my meds after my therapy appointment. I hope I am physically able to do it because it would suck to have someone else do it for me. It usually takes me ten minutes to do. We’ll see how long it takes with my back being the way it is. Probably will have to sit and do it not stand like I usually do. Standing has been a nemesis in all of this and I hate it. Just brushing my teeth hurts. I wanted to shower but I didn’t feel up to it. I don’t think I should take one while feeling like I am going to pass out. It might not be the best idea even if it makes me feel a little better. I will do that tomorrow. I need to change clothes anyway because of the sweating. I hope I sleep through the night. It has been a long time since I had a night where I didn’t wake up at 3 in the morning. I keep waking up because stupid bladder needs to be emptied. I am tempted to ask my uro for a foley just so I can sleep. But that might not help with the healing process of my bladder so I won’t call. I am tempted though.

one week post op

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

One week post op

I just had a shower to get rid of the hospital smell and to wash my growing hair that needs it. It has been a few days since I last washed it. My mother dried my back and she said I was hairy. She doesn’t get it. HAHA I thought she would know by now that I am on hormones seeing as I have facial hair but she isn’t making the connection and I am not going to enlighten her.

My groceries came today from a different vendor. I had my niece help bring them to my room as I couldn’t carry it. I am not supposed to be lifting anything but it is hard remembering. After the groceries were put away, I took a nap until my sister got into an argument with her daughter. I had no idea what the fuck they were arguing about. My niece left shortly thereafter, before I got into the shower. It was nice to shower but very tiring. I don’t think people realize just how tiring it is for people with chronic illness and pain to shower. I know my fellow pain sufferers understand this.

I plan on making a steak for dinner. Hopefully it will give me the protein and iron I need to get to feeling better and not so tired all the time. I also bought chili which I will have tomorrow with some tortillas. I love making a burrito with the chili and eating it like that. I wish I bought red potatoes. I would love a red potato salad right now, with oil and vinegar not mayo. I love a potato salad with oil and vinegar. It tastes so good. I like it with mayo too but will prefer oil and vinegar.

I read a chapter in my book. Seems I can read a chapter and then lose interest when it comes to an end. I want to finish reading the book as it is due in a couple of weeks. I don’t know if the library will be open by that time. Everything is still in lockdown with the virus. I haven’t kept up on the reports for how long it will be as I have been staying off Twitter with my recovery. It is hard to listen to all day long and about the rebellion of youngsters or even others who don’t care about themselves yet profess to care for others. The real trenches are the lab workers and assistants to get blood samples and other specimens processed. There are also the cafeteria workers and cleaning people that always seems to get missed in times like this. They do their job without opposition and they are often down cast but without them, trash would just be piling up and no one would eat in hospitals.

My sister was telling me that there were 50 nurses at the hospital I was at with the virus. I hope they recover and don’t die. I don’t know the age groups but sad to think that healthcare workers aren’t immune to this kind of stuff. Front line people. Makes me sad.

My other sister made beets. I was craving them so I am glad she made them. They were good. Just roasted them with salt and pepper. I wish I had ranch dressing to go with them but I don’t. The hospital where I was has good beets you eat at the salad bar. They are yummy with ranch dressing. I miss eating in the café. Maybe when all of this is over I will get some beets during one of my visits. I am going there next week to get my stitches out. I didn’t have OT or PT call me today. I found that kind of odd. The orders are there for them to see me but I think with the way the virus is, they are limiting people into homes. Sucks all around.