Tag: disability

Saturday Blog 09052020

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

Saturday Blog 09052020

I did nothing today except to read a couple chapters of Unquiet Mind. It is a well written memoir that talks about the pain of having to deal with a mental illness all the while working in the mental health field. I was glad that those that knew didn’t hold back her tenure at UCLA. It must have been a bittersweet moment to have tenure. I don’t think I could do the academic teaching thing. I often wonder if I had kept on track and not gotten ill while working on my bachelor’s degree where that would have taken me. I was only about a year and a half away from graduating when psychosis ended my academic career. Now I won’t be able to go back because of it being so damn expensive.

I got my new thumb drive. It is a USB hub and is so tiny. I could easily lose this so I am going to keep it in my laptop or it will get lost. I plan on just saving my blogs on it rather than putting them on the cloud like I have. This way I can store them a little more organized

I didn’t do well last night. I had a hard time trying to sleep. I finally decided to sleep with my feet on my wedge so my legs were raised as I slept on my back. I passed out soon after I was all comfortable. But I kept waking from weird dreams. I had to pee around 4 am but managed to go back to sleep for a couple more hours before I *HAD* to go. Around 7 I did my business and then took my morning meds so I wouldn’t have to wake up again in an hour. Some idiot called me around 10 and then I was up. I was trying to be a good boy and just relax today but it was so damn hard just lying there in bed. I was bored and not really tired. I wish I could have read but my head was hurting so I couldn’t. It was frustrating. Between the headaches and blurred vision, I was surprised I was able to read at all today.

For those reading my blog for the first time, I had back surgery 6 weeks ago and suffered a spinal leak a couple of weeks ago. There is spinal fluid in my spine that is causing headaches, palpitations, and tachycardia. The blurred vision is new because I had to bring myself to the max the past two days. I went food shopping and showered. Then next day went to the pharmacy to pick up my meds, but I had to go twice because half way there I forgot my mask. I still am not used to carrying it with me. But as the cliché goes, the new normal will soon be upon us and it will be like grabbing keys and cell phone before leaving the house. The reusable masks that I bought have not come in yet. One of my packages is stuck in customs in Los Angeles. I don’t know when I will be getting that package. It is from China so I am sure needs to be in quarantine or something before it can be released.

did too much and paying for it

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

Did too much and paying for it

Yesterday I did grocery shopping and showered. Today I went to the pharmacy because I forgot to go yesterday. It was hard. I walked half way there only to realize I left my mask at home so I had to walk back. I had to rest because I was short of breath. I got my meds and then collapsed when I came home. I have been sick since 11 am. I have tried to keep up with eating and hydrating but it has been difficult. My bladder is giving me signs it is not completely healed. I have been experiencing some hesitancy to go and then some starting and stopping when I do go. I am frustrated. I then had to go again an hour later and I had a full bladder when I cathed. So I can’t rely on voiding anymore. I usually cath at least three times a day but now it might have to be more. We’ll see. It is still early and I am still drinking to keep myself hydrated but it is hard when I am not thirsty.

I got headaches, palpitations, and high heart rate going on. I have been lying flat but I couldn’t stay down. I was too antsy. I should have taken an Ativan to calm down. I think I have to drug myself in order to get the much needed rest I need to get rid of the fluid. My friend said that it is like a bruise. Another person said that I need a drain. If I have to have surgery, I think that is what is going to happen. I am kind of scared of surgery because I already have arachnoiditis and I don’t want it to get worse or add to what I have. I am starting to have immune response to surgery and that isn’t good. Arachnoiditis is sort of like an immune response to surgery. My friend said that it will not go away. I am stuck with it but I need good pain control. Trouble is with Covid, I am not going to be able to see the new pain staff my pcp wants me to see and I know that I need an increase in pain medication. I don’t want to switch meds. I just want to increase what I have as the non-opioids are not doing much for me in terms of pain control. I have been on a stable dose of meds and just haven’t had too much relief except for the extra I take when pain is really bad. It really isn’t an “extra” as I don’t have much room to take more than I need on any given day. I hate that I sometimes have to ration my meds because otherwise I will run out before I can get a refill. It isn’t all the time that this happens. But with recovering from surgery, I have been in more pain than expected.

I want to write more but I need to lay down. Head is pounding and vision keeps getting blurred. I think if this keeps up I might have to go to the ER. I hope not but I don’t like these symptoms I am having and my gut is telling me something serious is wrong.

We Were

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

We were

This song was playing when I started typing so I thought I would share it. It is a song by Keith Urban and called We Were. I really love this song. It is on his new album, which I am not sure has come out or not. There are a few artists that I haven’t gotten their new stuff yet. I know he is one and Blake Shelton is the other.

Surgeon got back to me finally. I am to manage the tachy and headaches with rest but still try and walk around. If this continues, then it needs to be explored surgically. So I am done complaining about this matter. No way I am going back under.

There is another song that I am listening to right now by David Nail. It is called Oh Mother and it deals with the depression that he suffers from. It is a beautiful song. https://www.youtube.com/watch?v=j01POMsqQGU

Back has been bothering me most of the day today. And my ankle too. I have taken my BT meds and some Zanaflex for the spasms. It helped a little bit. I am still in pain. I wanted to take a nap this afternoon but I kept on dreaming weird shit so I couldn’t doze off. I was too afraid of what I might dream.

I have been in a sucky mood for most of the afternoon and early evening. I just feel so depressed and the surgeon’s reply made me feel more depressed. I asked him if being on steroids again would stop the need for surgery. I really don’t want to go under the knife again. But I also don’t want to be walking around places with my heart beating rapidly and then become short of breath.

thoughts while reading

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

Thoughts while reading

I have been re-reading Unquiet Mind, Kay Redfield Jamison’s memoir of her bipolar illness. I read the part where she describes coming to terms with her need to take medication and how she lost a patient through suicide. I had highlighted the chapter, probably because I saw there was no point in keeping myself alive. I had always said I was to die by my own hand. I had come terribly close last December. I don’t know why I am still here.

Last night, after I ended my blog, I got the results of my MRI of the past week. It said that I had a large volume of fluid in my spinal canal. It also said that I had arachnoiditis, basically clumping of the cauda equina nerves. This occurred post operatively. I don’t know if this is going to go away. I know that it is a painful condition. I guess it is good that I already am on pain medication because without, I would probably be really hurting and be stuck without pain management. I am to see my primary next week. I want to ask him to increase my immediate release dose so that I am taking the same dose for extended release and for breakthrough. I don’t know if he is going to be open to it. I figure I don’t have much to lose by asking.

I had made some notes about the book on an index card I am using as a bookmark. There is a lot of stuff that is important to know if you read this book. One is that treatment of a mental illness is as good as the medication treating it. Lithium is very good for bipolar/manic depressive illness. I am finding that duloxetine finally is working for me for my depressive illness. I don’t have bipolar disorder. I have recurrent major depression and it has taken a lot of trial and error to find a medication that works for me. I currently take 50 mg and it seems to work. My symptoms are lower than they were though I am still in the severe range. It is just that I don’t always feel every symptom of depression every day. Some days I can feel it more than others so results will vary. But Jamison’s take on medication is something every patient goes through when they have to take medication for their illness. The struggle to stay on medication is real. You can’t change my mind on this. Everyone I have ever known struggles with being on medication, even more so with psych meds. The stigma that you should “fight” without it kills me. It is what keeps a lot of people in pain because they feel they shouldn’t be on medication for whatever reason, usually because they don’t want to feel “weak”. I call bullshit. You are far from weak if some pill will help you with your problem. Unless the medication you are using is the problem, that is a whole other can of beans.