Tag: complex regional pain syndrome

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.

Writing Something is better than nothing

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

Writing Something is better than nothing

I woke up with my med alarm ringing. I didn’t know what the noise was but I wanted it to stop. It was ringing for a good ten minutes before I finally became coherent enough to shut it off. I took my meds and then went to the bathroom. I did my business then brushed my teeth. I needed caffeine if I was going to have therapy in an hour. I made a cup of tea as half and half seems to be a rare commodity these days. I need it for coffee but seeing as I didn’t have it, I made tea. It was strong and full bodied so I enjoyed my cup.

Therapy was a disaster. I didn’t feel like talking. It was too early in the fucking morning and I guess my therapist finally clued in that this time was not a good time to chat. We changed it for a later time next week on Tues. Just as well as I am not liking these virtual visits. It is so hard to think of something to say. I felt like pulling out my notebook that jotted down some stuff but wasn’t sure if she would approve. Frankly I just wanted to get back to bed. I didn’t care about anything else. I told her about the need to lay flat and that I have a leak. This recovery is taking its own sweet time. I don’t like it. It is too slow for my tastes. So naturally I got a headache today. Luckily, Tylenol took care of it. I was running a low grade temp last night that had me very worried. It didn’t go above 99.6 and ibuprofen took care of it. I have not been running anything close to 98 degrees right now. I am glad. I still feel like shit and if I do anything that requires effort, my heart rate goes nuts.

Last night my nephew was worried as I was so out of breath after I took my shower. It took me a while for me to catch my breath. My heart rate was bananas. I made up a container of water and then I made a container of Gatorade. I haven’t made one today. I should as I haven’t been drinking that much today. I will make a container when my sister leaves my house. I don’t feel like talking to her right now. I just am not in a talkative mood.

I am debating on contacting my therapist for another session this week. I feel like I should make amends to my non-talkative mood this morning. Part of me feels like she is mad at me but I know that isn’t true. I wonder if my therapist is sick of me. I always seem to go back and forth. Like I want to move forward but I rather do it two steps back to make sure I have room to fall. I’ve always done this with every therapist I’ve had. She is the first one in nearly twenty years to challenge me on my thoughts. She wants me to get better. The question is, do I want to?