I woke up around 0840 with my bladder close to bursting. I quickly took my meds and “ran” to the bathroom. I went back to my room to sleep for about an hour or so. I didn’t drink anything other than the sip or two of Powerade I had with my meds. My bladder was close to bursting again and it hurt so bad after I emptied it. I was like WTF. I know between my meds and stupid nerve injury, my bladder is fucked but fairly functional. I was so annoyed. I wanted to make breakfast burritos but was getting antsy. I was hungry so I had the one that was in the freezer with the picante sauce. I then took the longer way to the square, which required two buses. I went to Starbucks and had my espresso and wrote a little in my journal. It was fricken cold today but again I was wearing a heavy sweatshirt so I was roasting. I couldn’t write anymore so decided to use the bathroom (bladder was full yet again!) and then leave to go into town.
Caught the train and picked up my scripts. The “storm” is now slated for the evening/night. I could have rested today but whatever. I came back to the Square and just missed the bus so I caught a bus to the other bus location to the bus home. For what should have taken me 2 hours, took me three because I had to catch four buses. I was freezing and by the time I reached my house, my ankle was talking to me. I really needed some pain meds. I wore sweatpants that I swear just make you sweat. No breathable material.
I went up to my room and changed then got under the covers. I played on my phone until dinner was almost ready. My mother was making a turkey tenderloin. It was okay. I would have like breadcrumbs over BBQ sauce. My ankle was screaming by the end of the meal. I wanted to go back to my room but my fricken mother told me to put the veggies away as her back was hurting. Pissed me the fuck off.
Then I find out the “storm” is only going to be about six fricken inches at the most, which is NOTHING! And now it looks definitely like evening/night so I wasted a day, hurting my fricken ankle for an errand I could have done tomorrow. I am so pissed. The way this “storm” is moving, it probably will go out to sea by tomorrow and we won’t get jack. Fricken weather people just love to hype shit up!! I am so fricken sick of this. I heard one weatherman say last storm that it was going to be heavy snow turning to snow! What the hell does that even mean??!! Isn’t SNOW SNOW???? Unbelievable!
I need Pearl Jam but I got a fricken migraine so country music it is. I don’t know why every fricken time I turn on the radio app, I listen to commercials. EVERY SINGLE TIME! My sister called to tell me I need to make sure my niece is out of the house by 750. Yuck. I need to get her up at 730. I set my alarm after the call so I wouldn’t forget. I guess I will have an early start to making my burritos tomorrow. I am going to make them with two cheeses, cheddar and American. I should buy Monterey Jack as that is creamier than cheddar. Also melts better. Think I will put it on my growing grocery list. I think I am up to $175 in groceries, but a few items are meat so that is why it is so expensive. I want to get ribs again and some hot dogs. I found out they have a 16 count of my favorite brand that is a few dollars more than an 8 count. Score. I am also getting some eggs because I know we will be out by then, even though I just bought three dozen. I need at least a half dozen to make my burritos. I think that will be at least 3-4 burritos. They kept nice in the freezer and warmed up good, too, for my first trial. So it is worth it to make it in batches.
I rarely have pity parties. But tonight, something embarrassing happened to me that has been happening for a while and it just hit the wrong nerve. It depressed me because despite recovering from cauda equina syndrome (CES), not once but twice, I was ultimately disabled because of CRPS and chronic pain. Whether CES had a hand in it, I don’t know. It is doubtful as my last surgery was four years before my injury, a sprained ankle that was caused by intense spasms of my foot and ankle. That surgery was higher up the spine than my first surgery so I am not sure it affected my ankle and foot. There are a lot of what ifs, and I was pondering them today. Then the embarrassing incident happened and it hit me in the gut.
I can’t do much over what I have been dealt. I try to move on as best I can despite horrible pain. I am grateful my hands and upper extremities are not affected by pain. I don’t know what I would do if I couldn’t write anymore. I know there are speech to text things but I like the feel of pen on paper or the keys of the keyboard. I have my outlet with my blog to talk about how crappy the pain is and how it brings on my suicidality.
I was talking to my voices today, as I often do. We were discussing the use of testosterone and the effects of what they would do to me. That is if I don’t kill myself when I plan on it, which is soon. It all depends on how next week goes. I am nervous about it. I have even thought about assisted suicide, which may mean leaving the state and going to Oregon where it is legal there. It might take me a few months to save up for it, but what the hell. I can’t seem to get it right on my own. If a doc can prescribe me something to end it, that will help me. I don’t want to be in this level of pain or worse as I get older. It’s bad enough that just making my bed hurts. Making breakfast should not cause pain and I’m not talking something fancy, just making scrambled eggs and toast is a chore. I wanted to go to Starbucks today but my back was too painful because of the shitty weather, which is going to continue until tomorrow afternoon/evening. I’ll probably be in pain the rest of the week, more than my usual pain.
Right now my foot feels like it is being crushed. I’ve had to take my strong pain pill to quiet it down. That was an hour ago and I am still hurting. I am so frustrated that I have to wait for meds to work. Sometimes it’s 45 minutes. Others, up to two hours. I play with the Neurontin dose because I don’t want to be foggy the next day. I’ll take anywhere from 600 mg to 1200 mg a night. Some nights I don’t need it. It all depends. But when I flare, all the guns need firing. Pain today has been mostly in my foot. But my ankle hurt briefly. It piggybacks going up and down, from foot to ankle and back again. Sometimes it is the same pain, sometimes it’s a different pain in the different area of my foot or ankle. I never know what kind of pain I will get. The bone pain is the worse because that is harder to treat. It can be my malleolus or the metatarsals. And is always severe, like can’t move at all severe. I wish there was just one pill I could take for all of the CRPS pain. But there isn’t. And then there is an MGH resident that says opioids don’t work on pain at all. I like him to have CRPS. The meds might not take away my pain 100% but it brings it to a bearable level and that is all I need. Lately my pain has been rampant, a 7 or higher. Used to be a 6, now a 7 is my new “normal”. Before then, it was a 3. That was at least two years ago, maybe? What happens when my pain is a 10 every day? I probably won’t be alive to know. I hope so, anyway.
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.
• 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.
I didn’t have a good sleep. I woke up nearly every hour from 330-630. I was in pain but I was too sleepy to turn over to take my meds. Then by the time 0630 hit, I was really hurting so I couldn’t ignore it any longer. I was feeling kind of blah and didn’t really want to do anything. It was cold out so I took my meds and then went back to sleep for a few hours. I got up around 1130. My ankle was throbbing. I knew I should have something to eat but I didn’t know what to make. An hour or so later, I decided to order something.
After I ate, I went back to my room and holy pain! My foot turned into a block of ice and was so painful. I was feeling really down. I wanted to call PT to let them know I was not going back but I wanted to nap. I laid down and within fifteen minutes, my damn ankle bone went berserk. I decided to take the strong pain pill as I didn’t know what else to do and I couldn’t take my regular med for a few hours.
Today is the 17th anniversary of getting Cauda Equina Syndrome. I had lost feeling in my feet and had foot drop. My left leg was also numb. I was 25 and couldn’t walk or stand. It was a very difficult time. I had no idea if I would regain the use of my leg and it took months to walk unassisted. I was lucky that it was caught early and I did regain some mobility. I wasn’t 100% but that was okay. The shock of it is still with me to this day, made worse by being disabled by another condition that could have been because of the Cauda Equina Syndrome. I have no idea if it was or if I would have developed CRPS, Complex Regional Pain Syndrome, anyway. I still feel sad that I am no longer able to walk far like I once did. Even walking a block or two is difficult some days.
Another day of messing up
I woke up around 730 or so, I am not sure. I know I took my pain meds and then did my business in the bathroom. I think I recorded taking the pills in my Google drive excel sheet. I could have sworn I emailed the file to myself. Least I thought I did. I left the house around 0820 to go to Starbucks for breakfast. I had breakfast and then I went to work on the file. I had some difficulty connecting to Starbucks WiFi so I just used my hotspot. I check my email and there was no file attached. I checked my phone to see where it saved to and got nothing. I just figured I could work on the spreadsheet online. HUGE mistake. Either my computer was slow and couldn’t keep up or the internet connection was shit. Either way, whatever I did was saved, thus preventing me from undoing whatever I did. I lost ALL MY DATA FOR THE YEAR!!! I have no idea if there is a way to recover it or not. I was so annoyed I just fumed.
My cousin called me and told me my uncle was in the hospital. He didn’t tell me which one so I was like whatever. No one tells me anything anyway so I am not worried. I decided to go to my PCP’s office to get my scripts. As I was responding to some message, my sister called me telling me she was taking my mother to the doctors and that my uncle was at the place I was going to. After I picked up the scripts I went over to the building where my uncle was. A lot of walking. I stood the whole half hour or so while I visited. My ankle and back didn’t like that one bit. Around 1130, I left to go home and wished my uncle well and get better soon. He was thankful I visited.
I got home and wondered what time I had taken my pain meds. I figure around 1500 I would take them. I marked it in my med app to remind me of the next dose. I recorded it but didn’t take the meds. Then I got busy with my niece coming home from school and my mother coming home from the doctors. I had made a cup of coffee as my niece came home. I’ll probably be up all night but I think pain is going to be a major factor. My mother got settled and then I cooked dinner for my niece, my mother, and I. Nothing fancy just hot dogs and beans for my mother and I and mac and cheese for my niece. When we were finished and I was cleaning up, I didn’t feel right. I started feeling like I did the other day when I missed my pain meds. Uh oh. I went up to my room to take my meds but my damn bowels decided to act up. I had to run downstairs and I just made it to the bathroom. My ankle and foot didn’t like the run part at all. When I had finished, the liquid soap was out so I refilled it. That was the intention. I got the stupid soap every where because the hole in the bottle was small and caused an air bubble. I was ready to say fuck it when I figured out how to get it in. My back didn’t like standing while I emptied the small bottle of liquid soap and neither did my ankle. I was getting really dizzy and needed to get to my bed. Soon as went to my room, I took my meds. Now I got to fight off the withdrawal until they kick in.