killer bees

The past three days I have been thinking about what to write on here.  My topic was going to be about the killer bees and how they always seem to come out when I want to go to sleep.  The bees aren’t real. It is just this buzzing sensation I get because of the nerve damaged caused by a disc fragment in my spinal nerves.  I have been living with this condition, called Cauda Equina Syndrome (CES for short), for the past 9 ½ years. I actually got it twice. The second time was in 2006. I had it easier the second time around because I knew what to look for and how to get the proper care as well as what I knew to expect.  That helps big time as the first go round didn’t go well.  I was only 25 yrs old when I got it. My leg gave way one night, 12 hrs after seeing my chiropractor and got worse in the next 72+ hrs since then.  I had seen a doc the Monday as I could barely put any weight on my left leg and all the doc did was give me pain meds and a pain shot. He didn’t tell me about warning signs or nothing.  A couple days later I was to have an appointment with my psychiatrist, but by then the damage had spread to my right leg and I could feel my toes on either foot. I had foot drop in both, but the worse was my left where most of the damage was. I couldn’t walk at all.  She wanted me to call an ambulance right away but because of the current detours, I couldn’t be 100% sure I would end up at MGH so I decided to wait for my friend to come home and take me.  I was at her house anyway and didn’t have the key to lock up, plus she had 2 dogs so I didn’t want to leave the house open to them or have an incident where they attacked the EMT’s.  I know I added more time to the clock, but I didn’t want to go to some rinky dink hospital and then be forced to go to MGH in worse condition.  All this time, I just thought I needed some good PT and pain meds and I would be good as new. I couldn’t be more wrong.  Soon after I had my MRI (after being in the ER 12+ hrs and being up for 24), the radiology tech’s face was ghastly.  He said that I shouldn’t move.  I wanted to tell him, “buddy, if I could walk, do you really think I would be in this wheelchair???”  3 hrs later I was in the OR. My L4-L5 disc had ruptured. It was the size of an almond compressing my cauda equina nerves.   It took me a week just to wiggle my toes a little bit.  I had to learn how to walk again, which is probably fine if you are a kid. You can fall easily and not worry about doing damage. If I fell, I was afraid I was u going to end up back in the OR.  I had to wear orthotics called AFO’s to keep my feet where they were supposed to be while walking.  I had a long recovery.  In 3 months I was using just a cane to get around. I still have the walker.  I hope it continues to collect dust but you never know.  I was still having back pain all throughout this.  It wasn’t until my doc put me on oxycontin that I really got better.  I am off it now for reasons I won’t go into, but it really saved my life. I doubt I would be able to work 40+ hrs a week now if I hadn’t been on it. It helped me heal and push through the pain so I could get well. 

Six months into recovery, the nerve pain started.  My foot and left side of my leg from the outside burned something fierce. This lead to another wonderful med, Neurontin or gabapentin as its generic name is known.  Some people cannot tolerate this med and have had bad side effects. My system loved it and it has worked wonderfully.  With a high dose at night, I was almost pain free most of the day. Now, not so much.  I never thought much about the difference between brand name and generic, but with this med, there is a huge difference.  Once dose is usually all I need (on brand name). Generic I need a slightly higher dose to get me the same relief.  But the one thing it doesn’t change is my sleep.  This nerve pain is not something to mess with.  I have some nights where not even the bed sheets can touch me. Other nights, just before drifting off, the deep pins and stabbing begins, jolting me upright.  It drives me crazy because unless I take the gaba, I will be in pain. The side effect is that it takes me a long time to wake up after dosing. Sometimes I need at least 10-12 hrs of sleep to sleep it off or my brain is just foggy.  With my job, I need to be able to be places early in the morning so I can’t take it every night like I need to. Plus with me taking it with my other meds, it really knocks me out.

I have been having a lot of suicidal thoughts over the past few years. I have written so many wills and good bye letters that I know one day I will just end my life. Most of it is because of this pain I deal with every day and I’m not really talking about the physical pain. Mental pain is with me every day, every second. There is no escaping from it and there is no drug I can take to relieve it. I have a high pain tolerance. I just realized over the past few days that because I take ativan, I don’t seem to get the recurrent thoughts of suicide in my head as much. I think most of it is because of my physical pain caused by CES and the downfalls of having to keep track of things that no other “normal” person would think of, stressing me more than I realize.  How many people do think when the last time they urinated or had a bowel movement. If I don’t keep track it could be a week before I had a BM or significant long hrs since my last void that I am going to have an accident or a leak, well mostly a leak. I only had one accident and it was my fault as I should have gone to the bathroom before going home but I thought I would make it and I didn’t. Now I know that I can’t ignore those signals anymore and it stresses me out. 

Working long hours and days does help with the depression. It keeps the thoughts out that lead to planning and contemplating when I will and how I will kill myself. I know that I will someday and have already begun to do so. Maybe this will be my last writing before I die to tell you what really goes through the suicidal mind up until death.