Category: cauda equina syndrome

news broken and…

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

News broken and…

I broke the news about my having surgery and my mother burst into tears for god knows what reason. Even after her breakdown she didn’t know why she cried. She obviously doesn’t want me to have surgery. She doesn’t understand and my youngest sister tried to get her to. I don’t know how much of it was because she couldn’t hear or just couldn’t tolerate talking about it. My middle sister was adamant I was being selfish because I didn’t think of my aftercare. She doesn’t want to take care of me so I will have to have home services if I need it. Fuck. So will have to set those up as well as meal plan as I will be on my own and as much as I like Ensure, I really don’t want to be on a liquid diet while I recover. I will have to make sure I order some. I already have a $200 grocery tab going. Not sure I will have $40 for a case through Amazon.

I just googled the surgery and it is approximately four hours or more long. Fricken crazy. I wonder if I will have to shave my back. I got a lot of hair back there. The testosterone has made me so damn hairy. I hope I will be okay with everything. My sister was thinking of all the disasters that could happen. Thanks but I am already imagining walking in the hospital and being wheeled out. I have no idea what will happen if that happens. I might have to go to a rehab hospital for a bit but the house is not handicap equip and unless they give out loans to make the house accessible, I am not sure what would happen. Granted we are adding rooms to the house so I could take one but I would need an elevator to get to the second floor or some kind of lift.

I went to Starbucks today to try and write an essay and it didn’t happen. I got into watching traffic and social media. I should not turn on the WIFI but I did and well, 145 words got written. That was it. On the way home my foot acted up and two hours later I got the worse pain spasms ever. I was screaming they were so fricken painful. I just wanted to die. The voices started to ramp up during this time so in between screams I am hearing orders to kill myself. I couldn’t move so I just sat there being tormented. Once the pain meds kicked in, I was able to go downstairs for dinner. The voices are still murmuring in the background but not as troublesome. God they were so fricken loud. One of them is still trying to break through but I am ignoring him. He is eventually going to get pissed at me and I hope not because that will mean I have to listen to him and that will mean hospitalization. I wish I could get hospitalized without my family knowing where I will be going. Sucks I have to tell my mother where I am all the fricken time. I am 44 I think I can handle shit on my own like I have since I was 15.

Today is the official day I got diagnosed with cauda equina syndrome. You can google it or check out my blogs about it if you want. I am not going to say more about it. Because my psychiatrist and I first met some time this month, I think today is perfect to pick for our anniversary. I just sent her an email with my thoughts on it. Figures I would have a flare on my left ankle/foot on this day just to spook me. Having this kind of pain, numbness, and loss of function is what sent me to the ER, on my psych’s urging. She knew then something was terribly wrong and then when the residents called her, she told me at 4 am that I had this horrible condition. I still am and never will be 100% recovered. This is why I am hoping against hope that my surgery doesn’t have complications and that I can walk out the door instead of being wheeled.

painful day

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

Painful day

I woke up around 230 am in pain and my day has pretty much stayed that way. I have been in bed all day but I just cannot get up. I need to go to the pharmacy but I can barely manage the stairs right now so it will have to be tomorrow. I know it is because I did way too much walking Wed and Thurs for my appointments. Cold weather and having a cold just wipes me out. Next week I have four appointments. I am debating keeping my appointment with my therapist for Monday. I don’t see the point in seeing her. My anxiety is still going to be up. I am already starting to panic about Wed. Wed I see my neurosurgeon and we will be discussing what to do with my back and bladder problems. I have no idea how it is going to play out but I just hope he is on time.

Thursday I have two appointments, one with my therapist again and then seeing my pcp. Hoping that the pcp can do something about these bladder pains I have been having. Nothing is fucking wrong on scans. I really don’t want a cystoscope done. It probably is just inflammation from the catheter but I don’t want to live the rest of my life in pain because of this. WTF.

I see uro the following week so that is good. I really like my urologist. I am glad she is my doc. I know she will do what is best for me. I might have to switch catheters even though I really like the ones I have been using. They are just convenient for me. I just looked at some through the company that I am currently using. I requested some samples. I might call my supplier and see if they have samples as well. They gave me a bag but with the catheter I use, I cannot use the bag so it is useless for me. Things I never thought I would be talking about on a Friday night.

My eating has been poor the past two days. Yesterday morning I ordered nuggets from McDonalds and that has been the last thing I have eaten in the past 48 hours. I just had an Ensure as I don’t think I will be going downstairs. I need to go to the grocery store this weekend and get some more of the new cereal I like. It is by Special K and is called honey oat. It has multigrain flakes in it. It is so good. I hope they have a bigger box in the store than they have on the app that I buy my groceries from.

walking too much

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, recurrent major depressive disorder, suicide

Walking too much

Yesterday was my first double header since being sick. I am not 100% well so I was really tired when I got to my second appointment. I am glad the two buildings were close to one another but there was still some walking involved. Therapy was a little rough. I am experiencing so much feeling and she doesn’t put up with much in between stuff. She likes to stay on topic and squeeze shit out of me when I don’t want to. I have hid from my feelings for a long time so this is completely new to me, to have a therapist that actually wants to work on feelings and stuff. I talked briefly about today’s appointment with her as I didn’t want to be stepping on people’s toes. Everything is a gray area all of a sudden. I feel like I am seeing psych sub specialists for things that I used to see one person for. Yesterday’s events exhausted me and what the cold didn’t do was make me exhausted enough to sleep. My nose kept running and I felt like I had a leaky faucet for a nose most of the night. Same tonight. Then my bladder kept me up with its constant shit of having to be emptied. I also been having loose stool so I been trying to void on my own rather than use the catheter. It’s the only way for me to go.

Today’s appointment talked about boundaries and for the first time I felt like I wasn’t asking too much by wanting privacy in the bathroom. It has been giving me such anxiety so we creatively came up with ways to say I am in here so my mother doesn’t barge her way in. One is fixing the lock on the door. It has been broken for so long I honestly don’t know if it can be fixed. It will require YouTube and google or I might have to get another mechanism or part to have a working lock on the door. Most people would know someone is in the bathroom and respect their privacy however those rules don’t belong with my mother, least when they concern me. Going to try these things first before actually having to talk to my mother which isn’t going to fly with her.

Yesterday I had sent my psych an article about trans youth and suicide. She recognized the name as one of the residents where she used to work. She then asked me if I thought about coming out sooner would have changed the course of things. It got me thinking and I am still thinking about things because I realized last night, despite twenty-five years passing, I am still suicidal and I am pretty much in the same boat as I was emotionally as I was then that I am now. What is going to keep me here is what is going to make the difference. I sent my therapist a text last night of the question and she responded this morning that it was a good question. Last night I started jotting things down of what has happened and if I do have something this time around that I didn’t have back then. I am not sure I will still be around. My mind has been going and planning this for a while and maybe this time I will succeed. But I think I need to know if my therapist cares if I am to continue to be here. I think that is why I am getting angry with her is because the voices have been saying a lot of stuff about her and I just been listening to them. My messages aren’t being answered when I send them. She doesn’t respond to my texts usually. If I am supposed to work with her, I need to know she gives a shit, that I am just not someone to just fill a spot because she has an opening.

If I sleep tonight, it will be a miracle. Ankle was already hurting before I left the house. My legs are killing me from the walking around the Government Center area I was in today. It would have not been a big deal if I was “normal.” Being disabled really sucked. But I am glad I saw the psychologist today. I feel better knowing I was validated.

sick and in a flare

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, recurrent major depressive disorder, suicide

Sick and in a flare

I woke up around 5 am because my bladder said to. I then decided to stay up as my grocery delivery was scheduled between 830 and 9. I had two cups of coffee and a breakfast sandwich. After the delivery I put the stuff away and then got my haircut. I went without checking the bus schedule and was too early. I had sent a message to my doc asking if I had to see him because of the mucus being green from my nose. I didn’t get notification until after I got home so I had to go back out again. I just wanted to go to bed and sleep. I was so tired and I had a mocha after my cut. No amount of caffeine was going to keep me awake. I got to the doctors and had to wait. Office was busy. I got sent home with a “ I will live” and I cursed myself for going in. I was really exhausted and tired by the time I got home.

I was playing with my phone and had to use the bathroom. Coming back to my room my ankle flared up. I had to have my niece get my cane in my room. Now I am stuck here. I went to bed before grabbing some catheters so the next time I go may not be the bathroom. I have not been successful cathing in bed. I guess I will have to figure it out now.

I used to love Twitter. I used to get my news from there. Now, I rather be in the dark about the fucking news because every day my govt does something stupid or unconstitutional. Let this year be over so I don’t have to deal with the election bullshit (I will vote!!) and let Jan 31st happen with NEW admin that is Democratic or Pigskins anything but R. All I will say on the matter. If this offends you, I am not sorry.

Hope this weekend’s storm doesn’t kill me. My little suicidal brain has been calculating shit. I won’t get far if and only if my psych do what I told them to do. Other day when I was in painsomnia mode, the voices got out of control. I was thinking of going in the hosp but now with this cold, it isn’t going to happen. They don’t allow fricken cough drops on the unit and the ones that they do allow are the kind that a doctor has to write an order for and numbs you. I hate those kind. I also don’t think going in will be good for my bladder condition. I am too fearful of an infection happening, either because of my having to cath (if the unit allows ME to do it) or if I have to have a Foley and a leg bag. Psych unit bathrooms can be gross even if cleaned once a day. The voices are responding to the higher dose of Invega. I guess I will have to keep taking this dose despite side effects. Benadryl and Ativan will have to be my counter agents for the side effects. I switched taking it to the morning and haven’t had any sign of effects yet.

I’ve already decided that if I am still sick next week, I am going to cancel my appointments with my psychopharm and therapist. I didn’t have therapy this week because of being sick. I supposed I could have been seen today but I really didn’t want to so opted for next week. I am having the fuck its come into play where I don’t want to see either of them because I just feel so damn hopeless. I might cancel anyways or just one as I am supposed to meet both the same day but at different times. I don’t know why I do that because it kills me but it gets it out of the way I suppose. Guess it will depend on how much this virus and this flare will conspire against me and what my recovery will look like. Stay tuned…