Category: cauda equina syndrome

Sunday Blog 12092021

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

Sunday Blog 12092021

I’ve had a lazy day today. I woke up in the middle of the night to pee and struggled getting back to sleep. I woke back up around 5 but for some reason I didn’t get up. I just turned over and went back to sleep. I got up at seven to have coffee and drain my bladder. I have been on a four hour schedule and it has been going pretty well so far. I have been drinking a lot because I want my veins to be good for tomorrow’s MRI. I have been having abdominal pain all day despite being good on emptying my bladder. I used a hot pack that the hospital gave me post op. It helped a little bit. I have been taking ibuprofen and Tylenol. I don’t want to take the BT med if I don’t have to.

My neighbor had a BBQ and my brother in law brought over some food. I had some pork and a potato that was very good. I love potatoes and this was like a double baked/grilled thing. It was so good. I had made a fluffernutter for dinner so I am glad I had some protein so I won’t be hungry later.

I am still having yellow discharge so I sent a message to my surgeon about it. I don’t know if this is normal or if I still have an infection. I just hope I don’t have to call because I never get anyone on the damn phone. I always get someone’s voicemail. So annoying. I haven’t been wearing boxers, just female underwear and a pad. I hope I don’t have to see the surgeon again after she said see you in four weeks. That will suck. But I don’t want this to turn into something bad either.

I shaved my head and face today. I trimmed the goatee to a stubble and then shaved around it. I also trimmed my mustache because the hairs were making my nose itch. I can forget about a thick mustache. It would be too itchy for me.

I set my alarm for 0700 tomorrow morning so I will be up in time to have coffee and breakfast before my MRI appointment. I am kind of nervous. I have to remember to take with me my meds so that I can lie on the table comfortably. Otherwise I get up and I can’t really move for a few minutes because my back hurts a lot. I just got to remember to bring water with me. I just put the meds in a travel pill box and put it in my bag so I don’t forget. Trick is going to be to remember the water. I always forget it when I leave the house.

I have ten dollars left on my T pass. I will have to put more money on it when I get paid next. Tomorrow should be my last travel day unless I need to go to the square for something. I do need to get cheese for my mother. I might get some burgers, too as I will be at the butchers. Oh and some steak! It will have to be Tuesday when I go because Monday I have therapy after my MRI and I don’t have time to shop. I need to catch the bus home. I think if I time it right, I might have therapy on my front porch. It will be a good day to sit outside some and have some fresh air. No one will bother me as it is pretty quiet.

I can’t believe how much pain I am in right now. I don’t know if it is my bowels or just the surgical area. I haven’t moved my bowels since Friday. I have been taking the Miralax but that isn’t always reliable. I didn’t take it today because I don’t want to be shitting tomorrow at unknown times. I used to be able to go in the morning soon after I wake up but that hasn’t been the case lately. I also don’t know if the pain is because of the discharge or not. I sent a message to my surgeon today to ask about it. I figure if they check the messages first thing in the morning my message will be right there for them to see. I messaged my psychiatrist but I haven’t heard back from him so I sent the same message again. I don’t see him till Oct, which really sucks. I am approaching eight weeks that I have been on Pristiq. I haven’t noticed any change with my mood. My pain has been less but that is usually the case after I have surgery. I think I have had only two flares during my recovery so far. Right now my ankle and foot is calm. Pain is like a 2 as it is throbbing just a little bit. But the nerve pain in my thigh has been horrendous. That is still ongoing. I am glad I got an MRI this quickly. I just hope I don’t have to see my neurosurgeon again. That will suck big time. I don’t really want another back surgery.

I took my meds a little while ago. I think taking them might help with the pain a little bit. I just took some BT meds because I am so uncomfortable. I hope the discharge is just leftover from the infection I had and not something new. I really don’t want to be on antibiotics again, especially that flagyl I was taking. It was horrible. I had to take it fast before it melted in my mouth with the bitterness. Yucko.

Red Sox got beat by the White Sox today in the ninth inning. I am so disappointed. We are tied for the wild card. It is our only chance of making it to the post season. We are playing Seattle next. These will be west coast games which means late starting times. I might just have to check the scores in the morning because I am not going to stay up till 2 am listening to the game.

derm and other things

by Midnight Demon, posted in blogging, cauda equina syndrome, CRPS, depression

Derm and other things

I got up with a very full bladder at like 10. I didn’t want to get up but I had to as I was hurting so bad. I took my meds before going to the bathroom. I didn’t cath but I peed a lot for a long time. The flow was really slow. I made coffee afterwards and had something to eat. I then went back to my room to charge my phone. While the phone was charging, I shaved my head and brushed my teeth.

The bus was coming soon so I got dressed quickly once my phone was fully charged. I went to the orange line and when I got off at my stop, I got kind of lost as they changed the layout of the station. Took me a while to figure out how to get to the street where the shuttle was. I was hoping I was at the right spot as there could be many places for the shuttle to stop at the street. Luckily, I chose the right spot when the shuttle came. I was early for my appointment but was seen soon enough. The doctor was really fast but answered my questions of concern. He said that I have a mole on the bottom of my right foot. He looked at it for some time. The mole that I had concerns about was not a concern to him because it was growing hair. Good to know. The visit was over in like fifteen minutes after the medical assistant took a pic of the mole then I left.

I waited at the shuttle stop but I was really thirsty so I walked to the CVS that was nearby. Starbucks was across the street so after I bought a water, I got a mocha. I drank it on the way to the station. I figured I would walk. I did really good without any back spasms and such. It was my longest walk that I took since my back surgery from last year. I was really proud of myself for walking that distance. I caught the red line home and the bus was waiting when I got there so score. I came home and there was a package for me. It is my frame for my Eddie pic that I had printed. I love him so much. He didn’t do good on his last outing, which is sad because he was good at his previous start. He is still my favorite pitcher.

I called to schedule my MRI and I made the appointment for Monday. I also called for my eye exam and that will be next month. I am kind of nervous about the MRI as I have been having pain. My neuro was able to order it based on my symptoms of pain in the L2-L3 area. I just hope the disc that has herniated isn’t more herniated. I really don’t want to see my neurosurgeon so soon after he discharged me in Dec. I sent a message to my neuro to tell her the scan is scheduled for Mon.

I am really tired. I think I am going to make scrambled eggs with cheese for supper. I don’t really want anything else. Sox are in Chicago playing the White Sox tonight. Game is at 8. Hope I can stay up and listen to the game for a few innings. I am not sure how Chicago is doing this year. Sale got put on the Covid IL today as he tested positive for the virus. He is out for the next two weeks or until he is negative. I don’t know if he is having symptoms or not or if he is vaccinated. I don’t know why they are keeping this a secret when it is a public health issue. Just ridiculous.

Three weeks post op hysterectomy

by Midnight Demon, posted in blogging, cauda equina syndrome, chronic physical pain, CRPS, depression, gender dysphoria

Three weeks post op hysterectomy

I had an appointment to see my surgeon this morning and got up late. I just finished my coffee when I had to rush to get dressed and out the door to catch the bus. I was right on time for the appointment as the bus was late. The surgeon and I talked about my bladder and how things were going. I said I feel like I am being controlled by my bladder because I am so aware of it all the time and on a schedule to go. She said this wouldn’t be forever and to resume taking the tolterodine for bladder control. She said that while operating she could see that my bladder was inflamed from the nerve damage. We also talked about increasing the Neurontin. She agreed that taking it would help with the pain so I will be taking a dose in the afternoon and at bedtime. She also said that if I have a big day to take an ibuprofen before leaving for it. She wants to see me in four weeks unless something comes up beforehand.

I came home from the appointment and ordered Chipotle for lunch. I emptied my bladder but there wasn’t a lot of urine. I tried again after I ate and still nothing significant. I took some pain meds as I am in pain and the bladder is empty. I took a short nap kind of sitting up on the bed and my back didn’t like it. So now my back hurts.

Over the weekend I sent a message to my neuro telling her about the increase in nerve pain in my thigh. She just got back to me and looks like I will be getting an MRI to see if the L2-L3 herniation is worse. Tomorrow I can call scheduling to schedule the test. I was able to find a lidocaine patch to put on it. I am so happy because I threw out the box that I had because they were expired. I don’t know how well this patch will work but will find out soon enough.

Yesterday I ordered a half black olive pizza and I have one slice left. That will be my dinner tonight. Or was. My sister threw it away. I am so angry at her for doing it. I went downstairs to my other sister’s apt and had some pita bread with fig and some chicken that my niece didn’t want. Greek food is good.

I am so tired I just want to take my night meds and go to sleep even though it isn’t close to 7p yet. I usually take my night meds between 7 and 8p. I did a lot of walking today at my appointment. I then went to Starbucks for a mocha and a pumpkin scone, my first of the season. There is no Sox game tonight so I am glad I don’t have to be up till late. Their games have been averaging at least four hours these days. Long time for a ball game but they also have gone into extra innings some nights.

On a fun note, I colored a page from a coloring book called It’s about to get real unprofessional last night when I couldn’t sleep right away. It is themed as interns should get paid at their sites rather than not, which happens most of the time. It really sucks for a financially strapped grad student working on their final degree. The page has been retweeted a few times and I think that it’s great to give them the exposure so that more books can possibly get sold. Coloring has been a good distraction for me. It also helps me to relax from anxiety and overwhelm. My therapist replied to my message about being overwhelmed with gender dysphoria. She said to journal and write to organize my thoughts. Sometimes I am not able to do that but coloring helps to calm me down enough so I can write. I don’t know why I have been having trouble writing when I am upset. During certain times I am able to but others it is like I write a sentence and then I go blank. My thoughts become frozen and I am unable to carry on with journaling. It is very frustrating as a writer for this to happen. I am glad that this blog has helped me overcome some of the frozen thoughts as I have been able to write at least 500 words most days. If I do less, I do less. Some days I can’t so I just post a picture of an animal.

Tomorrow I see dermatology to get my skin moles looked at. I am kind of nervous about getting there because I have to take the Orange line and then a shuttle bus to get there. It is going to be a long day.

can’t sleep so I have been up since 0530

by Midnight Demon, posted in blogging, cauda equina syndrome, CES, chronic physical pain, CRPS, depression, disability

Can’t sleep so I am up at 0530

I feel like I have been up every fricken hour after having weird dreams. I gave up at 530 and at 6 had some coffee and a banana bread biscuit from Belvita. Nothing is going on on Twitter so I decided to write.

I honestly think the Flomax I was taking was causing urges to be strong. Since discontinuing it, my urges have been way less than they are and that makes cathing a whole lot easier. I haven’t experienced any bladder spasms so taking the tolterodine was kind of useless.

Yesterday afternoon I had a bowel explosion. Shit was everywhere and I got it on my hands while wiping. It was very soft shit so I couldn’t hold it in. After I cleaned my underwear and the toilet, I took a shower to clean myself to make sure I was clean. I felt so awful after this happened. I hate when it happens. I have no control of my stool once it reaches the rectum and enters my anal canal. I just don’t have the function of holding it in. I have nerve damage to that area. I have been trying to be gentle with myself. I colored a difficult piece of art yesterday after the accident. It took me a couple of hours to sort the colors out. And then it took me a couple of hours to color. It took my mind off my troubles as I was thinking about what color to use next. My finger got pencil coloring on it and I felt like a painter doing work.

Today is supposed to be sunny and hot. I plan on going to the mailbox early to mail my ballot. Every time I get the mail in ballot I have to do it like three times before it is accepted. The first time I didn’t receive the ballot, just the envelope that had to be signed. The second time I received the white envelope and the ballot nothing more. Third time I received the yellow envelope and white envelope with a note saying that my ballot had to be in the yellow envelope and signed. Hopefully this will be the last of it as the election is coming up soon.

I need to shave my head and face today. I have stubble that is turning into a beard. I have finally mastered the goatee so I need to shave around it. I want to use the electric shaver but I need the mirror and I don’t know where it is at the moment. I like that I can shave in my bed. I can’t do my head with the shaver because it has hair dust that stays and I will have to wash my head afterwards. Besides, I get a closer shave with a razor than the shaver. I might use my five blade razor today. Just hope I don’t nick myself with it like I have in the past.

I bought some new books that I want to read about medicine history and the enslaved people it experimented on. The book got delivered but I don’t remember where I put it. I think it is in the unopened Amazon box. Maybe I will read today rather than doom scroll on Twitter. It has been a while since I read a book. I am still working on the MLB book. It is a big book with over 500 pages. I have learned a lot but I don’t think I can write the book I want to using this book as a guide. It doesn’t give me the right information I am looking for. I don’t know where I can find it. Seems teams names changed every year before 1901 as owners changed hands. Some teams were dropped off because they didn’t collect enough tickets to be worthy of playing so their players were switched to other teams that did collect enough tickets. It was kind of confusing at first but I think I got it after I read a little more. I have a reading challenge going on like I do every year. My goal for this year is to read at least 12 books. I tried to do the 20 books but always came up short. I figured 12 would be one book a month but I haven’t finished any book since Trauma and Recovery by Judith Herman. I have read 6 books so far so I only have 6 books left. Should be easy if I get off Twitter enough. I am a quarter way through the MLB book. I also bought Jim Acosta’s book, Enemy of the People. I can’t wait to start that one.

I wrote to my psychiatrist to tell him how awful I feel about my bowel and bladder issues and how I don’t think my therapist is going to be validating me on them. I feel so alone about it. Since stopping the medication, I have to keep myself on a schedule or otherwise I will forget to pee because I don’t have the urge. Also right now having a full bladder causes me abdominal pain because of the hysterectomy. I still have the stitches in me. I tried taking it off but it wouldn’t come off so I just left it. I am entering my third week post op. I don’t know when the stitches will fall off. I need to ask the nurse that when I talk to her hopefully tomorrow.

I bought some marigold seeds that I want to plant. I had bought some soil and terracotta pots for a seedling my cousin gave me but my sister was able to plant it in her pot so my pots have been sitting on the porch all this time. I might give it a go sometime this week. Marigolds are my favorite type of flower.