Category: cauda equina syndrome

Sunday Blog 19042020

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

Sunday Blog 19042020

I didn’t sleep well last night so I slept for most of the day today. I took my night meds early so I could possibly be asleep by 9p tonight. I already took muscle relaxers because my back was spazzing up a storm. My sister never went grocery shopping so I am hoping tomorrow my brother in law will take me. I need cereal, Gatorade, and other stuff. Most importantly Gatorade as my supply is good only for about 5 days. I really would like 32 oz bottles rather than the 20 oz that I have. That 12 ounce difference makes a huge deal. I’m hoping that it will be after 11 am when I am free. I have a 10a therapy session so I won’t be able to go until then.

I have been thinking of upgrading my phone but I am not sure I can afford to do so. If I do, I will have to take away the extra line I am paying for. I should do that anyway as the line is not being used at all. I wanted to keep it so that I had another number in case I wanted someone to call me but I got a google voice number to give out now. I got a text only number for my kindle as well so there is no reason for me to pay for another line. I still have the phone in case something happens to my phone. I paid off so both phones I own. I would like to get the Samsung 10 Note. I know it is bigger than my current phone but it comes with a pen and I would love to be able to write notes on my phone which I can’t do on the one I have. Or I might just wait till the dust settles for the Galaxy 20 model.

The PT I have called me tonight to set up a time for tomorrow. I won’t be able to go shopping like I thought I would. I might have to have my brother in law drop me off and pick me up. Depends how I feel after PT. I wish I could just order online as that would be ideal but I don’t have the money right now to do so. I just have my food stamps which can only be used in stores. Hope one day I can use it for online shopping.

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!

about pain meds

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

About pain meds

“It’s ok to be on pain meds. Can we stop acting like not taking pain meds is some sort of moral success? Being in pain doesn’t mean you have an addiction. It’s okay to not want to be in pain. I’d go so far to say that it’s normal.” Lupie Linda

I feel like I don’t deserve pain meds because I’m a bad person. I sometimes feel evil so I feel that I deserve to be in pain. I also feel guilty about taking pain meds because I know there are plenty of chronic pain patients that don’t have access to pain meds anymore. I know I am dependent on my meds and though there maybe times where I take and extra breakthrough med here and there, I am not addicted/ Pain levels dictate how I take my meds. If it’s above a 10 I may take more than when my pain is a 7. Often times I will go about my business and pain levels will go from a 3 to a 12 in a blink of an eye. It’s at these times when pain is a 12, the here and there come into play. I feel bad about taking the extra pain med I need to calm down the level of pain I am in. I know what works, usually. The bad part is my pcp doesn’t want to go up on my BT meds, even though I think it will be beneficial for me. He wants to put me on methadone and I don’t want to be on it. The people I know who take it don’t get relieve of their pain while on it.

I sometimes feel that I shouldn’t complain about my pain to my providers because of the ping pong ball back and forth I get. Almost like pass the buck. Or I get the sorry you’re in pain there is nothing I can do for you. That is the one thing that makes me feel so suicidal. Doc knows I am in pain but can’t do anything for me. So I feel like a) I got to manage anyway I can with what I got and b) have the why bother taking anything at all if it isn’t going to help? I flip through a and b frequently. Usually it’s 3am when I cry uncle and take something for the pain because all the non-narcotic meds haven’t done shit for me.

The downside to trying to play catch up to the pain is I may look “high” as my lil sister has constantly pointed out to me. My eyes appear dilated to her. I will not feel high or drugged out. I won’t even feel good. I usually just feel nothing or “normal”. I hate that she judges me like this. It makes me feel bad and guilty for trying to ease my suicide level pain. I try going without pain meds when I am below a 10 but CRPS pain can change in an instant. The level 6/7 can quickly become a 12 or higher. I use numbers above a 10 beciase chronic pain doesn’t fit neatly into the 1-10 scale. Chron pain scale is 0 to 14+ (see photo of scale). Level 14 is unbearable pain where you cannot function and wish you were dead. My breaking point is usually a 12 though. It will last for hours to days when I am in a flare, especially if the weather is whacky like New England weather can be. I feel it when the barometric pressure goes up and down. I have kept a record of it and usually the barometric pressure of 29.5 to 30+ will increase my pain. I don’t sleep during these flares which only makes the pain worse to cope with. I have found that the higher my sleep deprivation is during these flares, the more likely I am to think of suicide and plan for ending my life. Once my sleep is some what back to normal, the suicidal impulses are lower.

Saturday Blog 04042020

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

Saturday Blog 04042020

I had a successful family meeting last night. There were about 7 of us and my sister joined. I really liked talking to them. It was good that we could do this. I have to send out an invite for another meeting next Friday. I guess this could be a regular thing. The only thing that sucked was that I was deadnamed and the wrong pronouns were used throughout the meeting. I am not sure how to correct this. I think I will correct it the next meeting. My cousin liked my sideburns and facial hair. That was unexpected.

Meeting with my psych went well. I had it on my phone and once I got the audio going we were going. It was a good meeting. We got caught up and I told her how I liked the new psychopharm as she is trans and gets things with me. It is the first time that I am in a medical specialty where I don’t feel like an outsider. She liked that I am having a good level of care and she doesn’t want to mess with it. I don’t know what that means. I still want her as my doc. She said the next time I feel like chatting to hit her up and we will have another meeting. She does want me to stay in touch with her. I can’t imagine not sending her an update on me and stuff. She means too much to me to just drop all of a sudden.

I was exhausted after the family meeting. We talked for more than an hour. It was fun though. I had taken something to calm my bladder and it worked. I took another one today and it is slowing down the frequency I use the bathroom. I don’t know if I have an infection or not. Urine is clear at times so I don’t think it is an infection though symptom wise it could be a UTI. I haven’t cathed I just been voiding because the urge has been so damn strong I don’t have time to pull out a catheter to insert it.

My sister made cinnamon buns. I had a big dinner so I haven’t had one yet. I plan on it next time I go downstairs. My sweet tooth needs a fix. My CRPS foot has been flared up the past two hours so I am not keen on going downstairs at the moment. The bones in my foot and toes are hurting really bad. I took some medicine for it. It is making me drowsy. I don’t think I am going to be up that much longer. I hope to be asleep by midnight. Just hope the bladder calms down some because running to the bathroom has sucked all day. I hate that this isn’t getting better. I could take some antibiotics and see if it goes away. I have an order for it but I never filled it because it wasn’t a definite infection. I had three different cultures and they all showed different things each time. It was really frustrating. And the UA was negative each time. Monday I will go to the hospital to drop off a specimen. I will go by T as I can’t get a ride. That is going to tire me out big time but I think I will be okay. I will try and increase my activity tomorrow to see if I can walk down the end of the block and back to my house. I need to go to the pharmacy to get my meds as well. That is going to be really taxing. I thought my meds would be ready today but they are showing that it is still being filled. I will call in the morning so I can just pick it up by the afternoon. I need the meds as I need to do my boxes for the week.