Month: February 2018

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.

Early morning wakening and other things

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

Early morning wakening and other things

I woke up around 530 in pain, after falling asleep sometime after 1. I was not happy. I took some pain meds and contemplated staying up or going back to sleep. I opted to go back to sleep, but I set my alarm first as I had my grocery delivery today. Alarm went off but I didn’t want to get up. I finally did and managed to brush my teeth. Then I made some coffee while waiting. I am glad I got up because the delivery guy came like 20 minutes later. I showed him where to put the groceries and then after he put them there, I put the refrigerated stuff in the kitchen. I also got the frozen stuff as well. The stuff that didn’t need to be in the fridge, I just left until I was able to put them away. I told my mother I bought her tuna and she had a fit that I paid 50 cents more than another grocery store. You’re welcome!

I drank my coffee and was getting hungry but didn’t feel like cooking. I remembered I bought some breakfast burritos so I got one out. The preferred method was the oven, but screw that. I microwaved it. It was okay. It had beans in it with eggs and Canadian bacon. I think cheese was in there too, but I couldn’t taste it. I wanted to have some pie that I bought but thought it was too early for that. All my ingredients for the casserole came. I plan on making it around 3 today. My mother said she doesn’t want it. I figured. She doesn’t like chili. I hope I am not going to eat the entire 9×13 pan by myself. That will just suck. I plan on giving some to my brother in law but not sure if his system is up from things spicy as he is getting over a stomach bug. I’m not sure my youngest sister will eat it. I know my youngest niece won’t even look at it.

I came back to my room and my damn foot went berserk. It was time to take another dose of pain meds so I took it. I don’t plan on getting up until it’s time to make the casserole. I am tired from running all over the house, putting things away. I didn’t realize I bought so much soda. It will last though because I don’t drink it every day. I still have my orange mango from Nantucket Nectars. I bought them last month and I think I just drank one. I bought 7Up, my favorite soda ever. I haven’t had it in so long. Only certain stores sell it so it’s hard to find a 20 oz bottle. I bought a 12 pk of 12 oz cans.

The casserole came out okay. I don’t think I will make it again. I don’t know why I bought cheddar cheese and sour cream. I didn’t use it when I had a piece. I was kind of full with just half a scoop. It was fun making it though my ankle and foot didn’t like it. My back is bothering me too. I lugged a quarter case of water up to my room and think I took my hip out in the process. I am so tired now. I want to nap but am afraid that if I do, I will be up all night. I could be up all night anyway if I stay up.

I listened to like 4 innings of the game before cooking. They were losing 3-1 when I left. I thought they would comeback and they didn’t. They had their first loss today at 6-1. There is a second game but it is only on TV. I am upset over this as I want to listen to it. I like listening to it better than watching. I had some baseball fix. The starting pitchers only pitch 1 or 2 innings before changing. I never noticed that before, but then I never really paid much attention to Spring Training. I usually just pay attention when the season officially starts but I need baseball in my life right now. It’s like a drug to me and I was jonesing pretty bad the off season.

I’m a duck

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

I had a difficult sleep, not falling asleep till 5ish. I woke up 15 minutes before my alarm and just laid there until it went off. I felt like shit but got up. As I was walking to the bathroom, I got the dry heaves. There goes brushing my teeth. I used the bathroom and as I was washing my hands, the heaves got worse. Phlegm at the back at my throat wouldn’t go up or down and it was gagging me. I got sick and then felt a little better. I had some queasiness in my stomach so took a Zofran. I got dressed and then headed to the bus stop.

I figured having a breakfast sandwich might settle my stomach, but I wasn’t so sure about the espresso so I just had 4 shots. The Zofran worked and the queasiness went away. I still wanted my bed but I had to see my therapist. I wrote for a while, not writing much. Time seemed to pass very slowly. I left Starbucks a little after 1 to catch the train to my therapist’s office. As I was crossing the street, I bumped into a former lab coworker. We talked for a bit. It was so good seeing him. I told him I had to run but it was good seeing him. I went to the train station and got off at my stop.

My therapist and I got caught up. He told me I was a duck. I asked what he meant and he said that above the surface, I looked like I was calm and collected but underneath, my feet were panicking trying to stay above water. He said that I was anxious. I said that I didn’t feel anxious and he said that is what I am noticing about you. I let that slide. It was a good session overall. Even though I had my doubts that he would work, it seems like he will. I am glad I stuck with him, even though there were plenty of times I wanted to end. Hell, in the first few months, I wanted to leave 5 minutes before our session started. Just run out on him. It has been 10 months in working with him. He is laid back, though I like that about him. It makes me more relaxed to be around him. I like that we are having more back to back conversations and I am not the only one talking the whole time, I mean, I do but it is followed by feedback, which was lacking the first few months.

After the session, I went to the butcher shop to get some ground beef. I want to make a chili cornbread casserole tomorrow for dinner. My check came in today so I ordered my groceries with the ingredients that I will need. I hope I have a decent sleep so I can make it. I don’t know if I am getting sick or not or if it is just being up all night that I feel so rotten. My brother in law has the stomach bug so I have been trying to avoid him so I don’t get sick.

I am really fatigued from being up all night. I hate when I am up past 3 am. Just feels like you did a double or something and trying to catch sleep that you never can catch. I do have to be a little more vigilant in taking my pain meds regularly. I was doing so good and then I kind of slacked and I think missing a dose here and there has caused me to feel unwell. It might have contributed to me feeling sick this morning.