Tag: tethered cord

Saturday Blog 25042020

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

Saturday Blog 25042020

My sister was going off on my mother this morning. I have no idea what the argument was about or if she was yelling just so my mother could hear her. She started attacking my gender identity as she call me “whatever the fuck I am”. I was so damn hurt. I still am hurt by this attack. I texted my therapist and she was supportive. She said that she was ignorant. I told her I felt like dying. It is always going to be a trigger for me when someone attacks my identity. I feel like I just have the back of my baby sister and my “kids”.

I had my MRI today. It went well. I was so damn hot in the machine. It was a newer machine so made things really hot. I was sweating. The heat felt good on my back though. Until I got a muscle cramp in the middle of my back. That was not pleasant. I find out the results of the MRI Wed when I see my surgeon. By seeing, I mean over the computer. I got my sister to take a pic of my scar so I could send it to my surgeon. He wanted to look at it the other day but I wasn’t able to position the camera so he could take a look.

Monday I see my therapist the same way. I kind of am glad I don’t have to leave the house to make these appointments and it is kind of good because there is no way I can travel by T right now. I am just not up for it. I nearly collapsed at the pharmacy the other day while picking up my meds. I really thought my legs were going to give out on me. They were shaking so bad. I was so fatigued. I knew I wouldn’t be able to do outpatient things. My therapist was telling me that right now I am not doing any of those things so not to worry about it. I do worry because I don’t want to be in the house all the damn time with the psycho sister of mine. I still am dying for an espresso latte of some sort. And a haircut! I am not sure how the barber is going to cut my hair from now on but there has to be a way.

I saw my psych last night. It was so good seeing her. We talked about things and I am so lucky to have her as my psych even if she doesn’t prescribe meds for me anymore. It is kind of weird seeing her just to see her though. I am still grateful for the opportunity. I really miss her. I think she misses me as well. We have known each other for so long that it is hard to separate ourselves. I have been in contact with her a few times a week, just giving her updates on how things are going. I can’t seem to break that habit.

chasing what is already gone

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

Chasing what is already gone

This song has been in my head for the past hour so I thought it would make a good title for today. It is a song by my favorite country singer Mary Chapin Carpenter. She has been doing some segments from home and it has been awesome seeing her like every other day with a new video of her playing her music.

Today I found out I am not as strong as I thought I was. I had to go to the pharmacy because they were not answering their phones. I went there and found out they were processing the wrong medication. I was livid. Then they told me it would be three hours before the script could be filled so I went home and my legs felt weak so I didn’t go food shopping like I had wanted to. I had to go back to the pharmacy to pick it up three hours later and while I was waiting in line, I felt like I was going to collapse. There were three people ahead of me. By the time the person in front of me was up, I was starting to feel weak in my legs. The tech couldn’t find the woman’s meds. It took her a while to find them. I thought by then I was going to collapse. Then the guy that was in front of her had his meds screwed up so they had to do it over because they didn’t have his insurance information. UGH. They called me and I felt so weak. I got my meds and the things my mother wanted and then I sat down. I was going to leave but I had to rest. The muscles in my legs were pulsating. I was worried I wasn’t going to make it home. By the time I reached the house next door, I was breathing really heavy. I sat on my porch for a bit before going in the house. It has been a couple hours since I came home and I still feel weak in my legs. My back is hurting me like the Dickens. I just took some pain meds. I sent a text to my therapist asking if it was ok to take my meds when I am hurting and she said yes. I somehow needed that reassurance that it was okay to take my pain meds when I am hurting really bad because sometimes I don’t feel like I deserve relief.

I got my headphones in my ears listening to Mary Chapin Carpenter as I recover from today’s outing. I am not planning on moving from my bed. I might go downstairs to have a bowl of cereal or pancakes for dinner. I don’t feel like cooking and don’t think it would be wise to do so. The pancakes are already made. I just have to heat them up. I love these pancakes because they have protein in them. They have a different kind of taste to it but other than that they are good. They are made by Kodiak.

I am using headphones because sound and air waves are bothering my foot. I hate this allodynia. Just hope it doesn’t keep me up tonight. I did a lot of standing so I might be hurting big time tonight. I am glad I took the pain med when I came home.

Saturday Blog 18042020

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

Saturday Blog 18042020

I am on day 999 of being at home. The weatherman was right. We did get snow so I won’t be going out as it is too slippery out. I was talking with my family last night and one of my cousins said her water boiler went so she doesn’t have heat. I am worried about her and her husband. It is cold and they just have a wood stove but it isn’t warming up the house. I hope she will be okay.

I have been in pain all morning. I woke up at 9 to take my morning meds and couldn’t go back to sleep. My back is all knotted up and shit. I took a shower and that made everything worse. I feel like my legs are not going to support me because my back is so out of it. I just took some meds to try and calm things down. I am so out of shape. I came upstairs and lately I just have been so out of breath by the time I get to my bed. I hate it. I don’t know when this endurance/stamina is going to come back to me. They say if you do it a few times a day you will get there. I have been doing this every day since coming home from the hospital and there has been no change. I just get so fricken tired so easily. And then I can’t sleep. I was up till 4a because pain was keeping me up. I felt like writing so I wrote a friend an email about my troubles. She was kind enough to answer the questions I had for her. She understands what I go through because she has gone through it herself.

I am trying to set up a zoom meeting with a friend for today. She is up in Canada. She is my best friend. We talk about everything and anything. It is so weird that we are so apart yet have the same symptoms and stuff. She used to cath but now she doesn’t. I hope that will be the case for me, though it isn’t looking like it will be right now. It seems every other day I need to cath and every other day I can void on my own. It is so weird. I don’t know why it is like this. It is driving me crazy that it is like this because it gives me the false hope that things are going back to normal but it doesn’t work out that way. I am so getting troubled by it. I need to talk to my therapist about it but I am not sure she will understand. I was so comfortable telling my other therapist of 16 years all about my bowels and bladder issues. I am not so comfortable with my current therapist. She is good and picks up on things. Sometimes that scares me that she does this because my other therapist didn’t so much. But then the other therapist liked to talk during the session rather than have me talk. In a way I am glad that I don’t see her anymore because I am getting the help I need with my current therapist. Eventually I will start DBT group and I am not looking forward to it. This will be when COVID flattens out a bit. I haven’t joined a group yet because of my back surgery and recovery and now the virus is making it so no gatherings are possible. Not sure how groups are going to be like when things resume. Maybe they will have a zoom meeting if everyone has the capability of doing so.

Foot has gone back to being a fuck. It is twitching again and there is nothing I can take to calm it down. I fucking hate this symptom of CRPS (complex regional pain syndrome). It started last night around 3 am and is continuing now. It is making me feel so hopeless and suicidal. I texted my therapist and she asked if I could take meds. I told her I took some but they aren’t really going to help the shaking/twitching sensation. I don’t know if there is anything I can take for this symptom. I asked my support group if there is something. Maybe there is and I just don’t know. My neurologist just wants me to increase the gabapentin but that makes me dopey as all hell and I tend to walk into walls if I take it during the day. This is why I take it mostly at night so that doesn’t happen. If I do need to take it during the day, I will take the least amount that I can to try and control some of the symptoms. My foot is fucking vibrating right now and not in a good way. It is so fricken painful. I think I might take some gaba now and see if that helps. I don’t have to leave my room till 5 anyway. It is 2 right now. I hope to get some sleep before dinner. My niece is making a ham and her mashed potatoes. Her mashed potatoes are the bomb. They are so good!

A Cuppa and a Shower

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

A cuppa and a shower

I had therapy this morning but because I didn’t wake up right away, I didn’t have time to caffeinate before the appointment. I miss having a latte. I don’t know if the Starbucks I go to is open or not. I heard some are closed due to the virus. I struggled to focus during therapy. I was just not there and then half way through session my therapist pulls the what is going on crap. She said I don’t seem right. Like something shifted. Something did but I didn’t know what. I just didn’t want to talk anymore. She wanted me to talk more about why I felt like I didn’t deserve pain medication. I am supposed to write about it. I think it is going to be on paper first and then I will type it up so she can read it. I am not sure if I am going to password protect it or not. Guess it all depends on what I write about.

I finally got the antibiotics for this stupid fucking asshole UTI I got. My brother in law picked it up for me and I am grateful because it is nasty out with rain and high winds. The winds are so bad it took out a branch of the tree that is just in the front of our driveway. My brother in law was not happy. I hope the antibiotics work in a day or two because it really hurts to pee right now. I can’t take peeing every fricken hour anymore. It is driving me nuts.

After therapy this morning, I took a shower after I had a cup of tea. I so needed it. I had some cheesecake with it. The shower felt so good. I wasn’t able to stand too long because I shaved my armpits. It has been raining and I have been hurting most of the day because of it. We had high winds that took out a tree branch and that branch is now blocking our driveway. It is going to be days before the city comes to get rid of it. I put in a tweet about it hoping to get a response but I haven’t yet. Even though the shower felt good, I was still exhausted afterwards. I wanted to nap but resisted as I haven’t been sleeping too good the past few days. I am just so exhausted from this infection and recovering from surgery. I still don’t have energy levels where they were pre surgery. I think the testosterone is helping build up my blood cells again. I have my shot this week so hoping this time next week, I will be feeling better and not so damn tired. The infection should be gone by then anyways. I am going to be careful every time I cath to avoid getting another infection. I think I got to start using wipes to clean myself before inserting the catheter. It can’t hurt.