Category: chronic physical pain

Win update and other things

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders

Win update and other things

My mother needed me to print off the email from Sears so she could have an itemized receipt of what she bought. I printed it out and when I got back on my bed, stupid thing popped up saying Windows 10 needed a security update and needed 8GB of space, minimum. Last time there was an update, I had to use my thumb drive to download and install it. This damn thing doesn’t give me the option and there is no way to minimize the fucker. I am not in the fucking mood to be dealing with this today. My pain is unreal because I made dinner for my mother, niece, and I tonight. Just one hour of cooking did me in. The cold rain and wind I am sure is not helping. Not that I felt great to begin with.

Last night, my leg was hurting so I massaged it. It felt really tight and swollen. Lovely! I meant to call my doc today but I woke up late because I didn’t sleep, again, through the night. Also didn’t help that I was a dumbbell and forgot to change the med reminder alarm to something other than 5 fucking AM. Scared the shit out of me! I will call on Monday, though I will doubt I will be able to see the twerp that is my PCP. I’ll probably see one of his associates.

I had my haircut done on Wednesday before I saw my psychiatrist. I woke up this morning and wanted to shave my head because it grew in and I wanted that close feel. I probably would have if my damn ankle wasn’t hurting so bad. It would have given me a reason to shower, though it has been more than a couple days since I have. I am getting bad at showering again. I can’t help it. It hurts to stand right now and I can’t shower sitting. Maybe if I had an enclosed shower stall or something. My previous house had one with a door. We have have a curtain and a some what high ceiling. Knowing me, I would get the water everywhere but on myself. Even when I am washing dishes, spoons especially, I get water every where. It’s like I take a bath along with the dishes. My mother tells me to move the head of the faucet inward but I forget or if I do, then water goes on the splash guard. I am terrible. Maybe tomorrow, if I wake up early (i.e., before 1 pm), I will take it first thing. I had wanted to make breakfast but it was past lunch when I got up. Oh well. Bacon is still going to be there tomorrow.

I wanted to write about CRPS for Rare Disease Awareness but I am having trouble with it. My brain is just not to focused. I’d have to research it a little more, even though I have it, I don’t have a typical presentation of it. I mostly just have pain that is unexplained, except when you look at my bone scans. That is what it took for me to finally get diagnosed as I have bone changes. Not everyone is that lucky. If I am up early tomorrow, I will try and write something for it. I think it is important to spread awareness about it.

Too tired from being in pain

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

I had a difficult sleep. I woke up every 4 hours or so. I really just slept all day. I was going to write about CRPS today as rare disease awareness but I don’t have the energy. Maybe tomorrow.

I texted my therapist about this flare. I am so full of despair. My heart is breaking. My cousin had a baby and she came up the house. I didn’t want to see her. I was hurting too much to go downstairs. I know the temp is going to drop and there is supposed to be rain tomorrow. Not like CRPS cares. I’ll hurt anyway.

I see the pain doc in two weeks. He better give me something for this or I’ll go insane. I need to sleep through the night not sleep all day.

I haven’t had any coffee today. I think I might make a cup of tea as it is getting late. I bought coffee cake. I had a couple pieces before dinner. It is smaller than I thought it was. I feel bad that I missed the game again today. I canceled my eye appt so I should be able to hear it if it is on the radio. I don’t plan on going out as it is supposed to be rainy and windy.

I hope I sleep tonight. My ankle is throbbing so bad right now and the bones ache. I feel so helpless. I wish there was something I could do to soothe but there isn’t. How can you combat bone pain? Just sucks.

Rare disease awareness week–Cauda Equina Syndrome

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

Rare disease awareness week

This week is rare disease awareness week and I thought I would write about one of my rare conditions called cauda equina syndrome. The syndrome is comprised of different symptoms when taken together requires urgent attention. At the end of the spinal cord, there are a bundle of nerves that resemble a horse’s tail, thus the name cauda equina. When these nerves are injured or compressed due to disc material or other trauma, they can cause serious damage. For those having back pain, it is important to know what the red flags are so that emergency surgery can happen to prevent further nerve damage that could become permanent.

They are:
• Loss of sensation of one or both legs
• Loss of sensation to the genital area or saddle area (basically between your thighs)
• Incontinence of bladder and/or bowels
• Retention of urine
• Weakness or numbness in one or both legs
• Severe back pain

Not everyone will experience all of these or might have some. It is important to get an MRI when you have a few or all of these. Don’t think that just because you don’t have all, you don’t have cauda equina syndrome. I only had severe back pain and weakness and numbness in my leg when I was diagnosed. Some docs think that you need to have bowel or bladder involvement to have this condition. THIS IS NOT TRUE!! The quicker you have the MRI and surgery, the better your chances for recovery. You have about a 48 hour window to avoid permanent nerve damage. It is important that you have a competent surgeon, someone who does spines. I prefer a neurosurgeon over an orthopedic surgeon because the neurosurgeon will have a greater knowledge of the nerves. That isn’t to say an ortho can’t be just as good. If the ortho only does spinal surgery, you might be okay. Just be sure they are board certified. You can check that out by checking on this website http://www.abms.org/verify-certification/
This is only in the U.S.

If you have been diagnosed with cauda equina syndrome, you may have a lot of questions about recovery. It is a multidisciplinary approach, from physical therapists, occupational therapists, urologists, neurologists, etc. It is important to know you are not alone and there are support groups out there. I have had this condition twice, which is rare. I had it at two different levels. Everyone that I have met with this syndrome does not have the exact symptoms or damage following surgery, even if the level was the same. It take a long time to heal from nerve compression. Don’t give up hope. Regeneration is a time consuming process, but with the right amount of physical therapy and home exercises, you can recover in time. It took me two years before I was able to get off my medications until I was hit with it again three years later. It took longer for me to recover but I knew what to expect because I had the support group behind me. No one is a cauda equina syndrome expert, not even the best doctors. Little research is done in this area. There are stem cell research going on for those that have paralysis and that gives us the hope that some day our nerves can be helped.

Check out my pages about cauda equina syndrome if you like to help you learn more about it.

Woke up at 3 in pain, yay!

by Midnight Demon, posted in Bipolar Disorder, Chronic pain, chronic physical pain, CRPS, depression, disability, mood disorders, painsomnia, physical pain, suicidality, transgender

I knew I was going to wake up when my pain med wore off. I thought the neurontin and Ativan would cover me. I was wrong. I have such intense burning going on and there feels like a little ball of pain toward the middle of where my ankle and foot meet. This is a new pain. Got to love CRPS and all the different pains it gives you. It is never the same pain twice, usually.

I just had some cornbread so that flared things up because I had to go down then up the stairs. I was hungry. I have decided to give some of my casserole to my barber and his pal. There is no way I can eat it all myself.

My big check came in so I paid my bills. Now I am broke again. Easy come, easy go. Sucks being an adult.

Pain is awful. I really wish I could have a break, if only for a few hours. I got into such deep despair last night because of it. I thought of ending things once again. I just don’t have a place to do it. I need to find one. I haven’t 100% made up my mind to do it, but having a place would ease the anxiety. I just feel everyone would be better off without me. I feel so useless. I can’t function anymore because I am not sleeping well. These broken sleeps are making me feel like shit most days. I’m never going to get better.

Been having a lot of gender dysphoria the past few days. My mother has been calling me miss and even though I correct her, she doesn’t care. I asked my sister to call me her brother and she said if I want to. I’m getting frustrated with the whole pronoun thing. If I didn’t have breasts, it might be easier. I don’t know when I can have top surgery or if my insurance will pay for it. I’ve been too scared to call and ask. I will ask the LGBT doc when I see him in a few weeks. O hope I don’t have to lose weight because that will be a hard battle. I’ve only gained weight because of my meds. I know I don’t eat right. I’ve been thinking of joining Nutrisystem. It is a weight loss program but I don’t think I can afford the food. I’ll have to look into it. I have other stuff I need to get done before I spend like $300 on food to lose weight.

I wish my breasts were smaller than they are. Women in my family have such huge breasts. I hate them on me. Actually, I think loathe is a better term. If I could cut them off myself, I would. Also been wondering if I should get a penile operation. I don’t know. I guess in time I’ll figure that out.

I requested my records from the pain clinic to see what they wrote about me. I think it is important for me to know. I have every right to see my records. I hope they come soon.