Category: cauda equina syndrome

Murphy’s Law

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

Murphy’s law

I had set my med alarm for my pain meds last night so I wouldn’t miss a dose. I woke up around 6, took my meds, and then went back to sleep. I woke up some time after 9 and decided to shower. By the time I was done, it was too late to catch the bus. I thought about taking a cab and I should have, but I didn’t want to spend $15 when it wouldn’t cost me anything for the bus. I waited until it was time to get dressed and leave. I grabbed my insulated cup and left the house.

I waited and waited for the bus. I checked the schedule to see if there were any delays and there wasn’t. I also checked to see if I had the schedule wrong due to a change. Nope. The bus just never showed up. I was fuming. I caught the next bus, which meant I had to catch another bus to the square. While I was waiting, my cup fell out of my bag and broke. I was so damn sad. I loved this cup! I had been using it all year. I saved the straw as it was new. I would recycle the plastic when I got to Starbucks. But because I was getting there until an hour later, I decided to go to Dunks for my favorite sandwich and then go to Starbucks. Fuck the chains. I didn’t care. I ordered my espresso and I thought about buying another cup but I found my trenta cup so hope that doesn’t break.

After I ate and had some caffeine, I was a little less hangry. I was kicking myself for not getting a cab or uber. I went to my barber for my haircut and he did a really good job. I paid him double and told him I would be back in two weeks. He said save your money and I said I can’t. LOL I end up using it for food or something stupid. Best to put it in his hands. He said okay. He asked what I was doing the rest of the day and I said I was thinking of getting my new glasses as they just came in. So when he was finished, I went into town. It was a lot cooler than it was yesterday so it was a good day for the walk. But not a good day for my pain levels or having bronchitis. I was wheezing by the time I walked a little ways to the station. I used the inhaler so I could breathe better. I did okay getting to the optical shop but not so great on the way back to the station. I was out of breath again and my groin was hurting me. I think I am using my hip muscles instead of my legs so it’s pulling. Fun.

By the time I got back to the Square, I had to wait 40 minutes or more for the next bus. Screw that, I called a cab. I didn’t care and my legs didn’t either. I was hurting and forgot to put my pain meds in my shorts. I missed my noon time dose. The cab came and I was grateful. My niece tried to scared me when I got to the door but I was so concentrated on things, I didn’t really notice. I got her though as I went to her house to drop off the mail. HAHA payback.
My mother had a low blood sugar and asked me to make dinner for her. I said okay. I wasn’t hungry yet as I was just trying to recover from being out. I decided when I came home, I was taking a cab to the station tomorrow as I need to see my psychiatrist. I downloaded the app and registered. I then booked a cab for the morning. I made my mother something to eat and then my sister called asking to cook something for my niece. I had leftover pulled pork then made mac and cheese for my niece. I also had some. I was kind of wheezing while I was cooking but I had just used the inhaler.

After I ate, I cleaned up and then went up two flights of stairs to my room. My lungs protested big time. I was so short of breath and wheezing. I was also coughing a lot so took the cough suppressant. I am now so exhausted after I recovered and breathing normally. My ankle flared up within minutes of sitting on my bed. I was thinking of listening to the game, but I am too fricken tired. I am going to take my meds and call it a night. If my brother in law comes to put in my AC and screen, that would be good. Going to be humid all weekend and I know I will be uncomfortable.

I finally had a bowel movement today. I took some fiber last night and again when I got home. I knew I was going to go as I was getting really bad cramps. Only problem was I didn’t poop enough so I am still feeling uncomfortable. My friend told me to drink a lot of water but that has problems of its own. I already changed underwear twice today and don’t want to do it a third time. I have been trying to drink fluids anyways because I have been sweating a lot. I think I am going to wear a diaper tomorrow when I go to the ball game. Sucks but at least I don’t have to worry about wetting my underwear. Nerve injury sucks. That is all for now. Pain has reached a 13 and I need to take my meds before it gets worse.

some good news, some pain, and other things

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

Some good news, some pain, and other things

I woke up again around 3 am to pee but was able to get back to sleep. I honestly have no idea how I didn’t end up in the floor of my bathroom as I was catching myself going back to sleep while on the can. My med alarm went off at 0715 which I just changed to 0850. I took my meds and then dozed off, waiting for my mother to call to put her socks on. The call never came and I lightly slept. When I woke up at noon, I was totally disoriented to what the hell day it was. It was raining pretty good and the wind was splattering the rain against my window, which at times was startling me.

I went downstairs and found the stove dismantled. My mother was cleaning it. Guess making burritos or tea for that matter, wasn’t happening. I was kind of dizzy but wanted some food. I heated up the pancakes I made yesterday. They were okay for day old pancakes. I didn’t drink anything with it because I was too tired to get something to drink. I chugged some powerade when I went back to my room. I also took pain meds. I must have been on my bed for about an hour or so when the atrophied part of my ankle just went nuts. I hurt so bad, I cried. I kept thinking about killing myself. I just can’t go on like this. I wrote a post on Facebook about how animals are treated more humanely than humans.

I took some pain meds and the pain settled down. I wanted some lunch so made a pizza. I finally found the right temperature to make it crispy. I sort of forgot about it when the timer went off because my mother was busy with the stove and wanted me to put the things I bought her on the pilots. They are a removeable thing that makes cleaning up easier. I checked on my pizza and it was almost burnt so I got it just in time.

My mother was making chicken for dinner and I wanted to make the red potatoes I bought. I washed them and cut them up, ready for my mother to make them when she was making dinner. I then went back upstairs. I rested for a bit. I was suddenly drained. I felt like I had the flu but not really. I couldn’t believe how wiped I was. I wanted to sleep but knew my mother would call me soon as I got to sleep saying that supper was ready. It takes me at least 45 minutes to get to sleep. I was on my phone when a FB message came from someone I wasn’t friends with. The message was from a teacher asking if I was the author of Darkness Always Wins. A student of hers wanted to use one of my stories for prose. She was asking whether the work was fiction or not. I told her it wasn’t as it was based on my experiences of mental illness. She thanked me and said my work was touching. I was so flattered that a student in Texas read my book and wanted to expand on it. I have no idea if the student was high school or college level. I guess maybe high school. I didn’t ask as I was just happy someone liked my work. I haven’t sold many books but some of the writing is from my blogs.

My mother told me I had to clean up after dinner. Fuck. I was really dizzy and needed a cup of tea. I made a cup and my mother wanted coffee so I made her a cup as well. When I was done with my tea, I washed the dishes. Normally I don’t use the dishwasher but today I did as I didn’t feel like washing. That is what it is there for, right? I loaded it and then just washed the pans. I even put the utensils in the washer. HA, it was an easy clean up.

The baseball game for today was cancelled due to rain. There isn’t a game until tomorrow late night as they are on the west coast. I hate west coast games. Game time isn’t until 10 pm. I need to sleep so I probably won’t be listening if I drift off before then. We will be playing the Angels and our first game is with their new ace pitcher Ohtani. I don’t know where he is from but the static about him is fierce. I don’t remember who we have pitching tomorrow. I want to say Price but I could be wrong.

I think my experiment of splitting my meds is over. I can’t handle the dizziness anymore. So it will be back to “eating a meal”. I just wish my meds didn’t make me so bloated after taking them. It is like eating a meal after taking the 12 or so pills. I also need to vamp up my fiber tomorrow. It has been more than a few days since I had a bowel movement. I know it is partially my fault because I got things loose and then stopped the senna for a night. Now I can’t go at all. I had two doses of fiber yesterday and still nothing today. I would take the fiber tonight but one time it started to work at like midnight and then I was going until 2 in the morning. Not a good idea. Thank you CES for causing my bowels to become so unpredictable and to keep going. I hate when this happens. I won’t go for days and then when I do, I can’t stop. Make up your fricken mind, bowels!

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.

Eclipse 2017

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

Eclipse 2017

My sister was in the path of the eclipse as she was down in South Carolina. She got really cool photos, which were similar to those on Facebook and Twitter. I was in Starbucks and didn’t care much for it as there was overcast. I saw some guy in the foyer outside with the special glasses and did see things go dark for a little bit and then bright again. I stayed where I was inside the store.

I wrote in my journal as I was having my espresso. I didn’t leave as late as I wanted to as I got up around noon time. I caught the 1300 bus, which had some kind of idling or brake problem as it was making awful noises at each stop or red light. I had bumped into a family member while waiting for the bus. They are still contemplating therapy but is scared of being put in the hospital for “being crazy”. As much as I have tried to reassure this person that will not happen unless they are a threat to themselves or others, I still am not getting through. It hurts me so bad to see them suffering so much.

After I couldn’t write anymore in my journal and saw the loads of pics of the eclipse on Facebook and those my sister sent me, it was time to catch the train to see my therapist. He didn’t pick his nails as much today and was attentive to what I was saying. It kind of freaked me out a little because I was getting used to him being silent all the time. In the beginning of session, I had to hold back laughter as he was wearing cranberry pants. It looked totally ridiculous but whatever. Who am I to judge?

My ankle was getting sore on the way home. I caught the first train that came to the station and luckily, the bus had just pulled up. I didn’t have to wait for the 1730 one. I was looking forward to chicken cutlets but when I came home, I smelled stir fry. I was totally disappointed. I was a sweating mess and had to change. I made a dish and had supper. Then I took a much needed shower. I had wet myself and needed new underwear. I drank a lot of water when I came home as I was really thirsty and didn’t feel like making iced tea like I usually do. I’ll probably have to use the bathroom soon as water just goes right through me for some reason.

After the shower, my ankle was cramping on me while I was drying off. I was due my next dose of pain meds so I took them when I came to my room. Now an hour later, my ankle bone is being tortured. I fucking hate this shit. I need to be up in 12 hours, I’ll be lucky to get to sleep tonight. I’m glad I took a shower so I don’t need to in the morning as I have a feeling it is going to be rushed. I need to catch the bus in the opposite direction I usually take as I got to go to another train station to see my neurologist. It’s an appointment that I need to go to only for her to email my docs about her diagnosis of CRPS. I want her to do it in triplicate for my PCP so I don’t have to go to anymore new docs. I am just seeing the specialist and hopefully he won’t recommend me seeing anyone else because I’ve had it with the profession, except for my psychiatrist of course. I took a strong pain pill. Lord only knows when I will have a bowel movement. I thought it was going to be today but nothing so far. I really hope I don’t get hit tomorrow while I am out and about. I am about an hour and half away from home, 45 mins of which I am on a train the whole time. Just makes me nervous because my bowels can be unpredictable at times and when I need to go, I need to go NOW, there is no holding it in because of my nerve injury. I haven’t taken stuff to go because I am out and about. It is going to suck so bad when I do go. I am not looking forward to it.