a Cold at Christmas time sucks!!

Today was another awful day. I forced myself out of the house to get my license renewed and nearly collapsed in exhaustion when I came home. I hardly ate anything today. I just ordered Chinese and didn’t even eat a small portion of it. I just have no appetite even though I have been thinking about food all day. I still am coughing and wheezing. I feel so drained. I am congested and I just feel awful.

Tomorrow is Christmas and I don’t think I will join in the festivities. I haven’t even wrapped my gifts or finished my shopping. I guess it will have to wait till I am feeling better. I don’t care. This cold has forced me to think about things. Yet not to think about them at all. Am I being selfish because I have not done anything? I don’t know. I just want to stay in bed where it is nice and warm and I don’t have to deal with anyone.

I am losing the sense of smell. My tastebuds have already flown the coop as my dinner didn’t taste as good as I thought it would.

I am pissed off at Walgreens for not filling my prescription because they need to have it clarified by my doctor. I don’t understand it. It says take as directed. How can that be misunderstood?? My doctor has told me how to take it so why is there a problem?? And it’s Christmas which means I most likely will run out of my script as the new one can’t be filled yet. I am so mad and when I went to voice my disgust with my mother I lost my voice because she couldn’t hear me because of my raspy voice. Nothing like trying to talk sense to a deaf person when you are ill. I hope they get this straightened out soon because I need my meds. I will fight with this stupid pharmacist if I have to.  She is a good person but I hate that she has to verify every prescription she gets!! That just takes too damn long in my book!!

I just realized I have not written anything in my journal in over a week now. And there are only six more days left in the year. I guess I will start a new journal sooner rather than later. I just haven’t had the energy of writing a blog and then writing a personal journal entry. It’s taken a lot of energy just for me to write this much.

I was supposed to go over my Aunt’s house but I never do on Christmas Eve. I have always done my own thing. Or I have worked. This is the first Christmas that I am not working. I got asked today what my job is and I told them I was disabled. How depressing.

Don’t know if I told you about my neuro opthalmalogist appt went. They still don’t know what is causing my eye changes. I still have to get new glasses as it was recommended that a new progressive lenses might help. I had to return my other ones as I could not see out of them at all, or I could for a little while and then all went blurry. I hated them. I have worn glasses since the first grade but these I absolutely could not stand. I liked the frame and all but there was just something wrong with the lenses. So my Christmas gift to me is to buy some new glasses. Course I will only go shopping if I am feeling better!!  This cold sucks!!

living with disability

Been thinking how this is the umpteenth Saturday that I have been out of work and I have to say not working on a Saturday night is weird. I had worked nearly every Saturday since 1996, with the exception of when I had to take the day off for family functions or vacations. It sucks to be disabled and I still cannot believe how fast things went from sucky to downright horrible in four months. In four months, I went from working two jobs, to working none. After fourteen years of working at a major medical center in the heart of academia, I was done, finished due to chronic pain cause by a disc fragment the size of an almond pressing on my nerve roots. This didn’t happen overnight. It took ten years to progress to a condition called Complex Regional Pain Syndrome (CRPS), all due to the fact that after my foot drop, I never regained strength in my foot/ankle enough to walk like a “normal” person or at least the way I walked before this fragment wrecked my life forever. I still remember going to a physiatrist that my psychiatrist highly recommended, only to be told that there was nothing to be done. That I was to live my life as is for the rest of my life. That my foot slapping and weakness was never going to get better. I just wish that he took the time to give me some alternatives other than this. If I perhaps was put into an AFO (Ankle/Foot Orthotic) sooner rather than later, maybe the outcome would have been different.
I have been trying to work on a comparison paper for the past few weeks and have hit a road block. I don’t know where I want this paper to go and am stumped as to who to ask for help with it. It was my idea but the depression of last month kind of through me for a loop and I am now trying to get back to my writing. The hard part is that I think this paper sucks, or rather that my writing sucks, and I just can’t move forward on it. I lost whatever it is that I was thinking when I first wrote the paper and I just can’t get back into the groove. It is very frustrating. And having to deal with my ankle flaring up every night for the past three weeks has not been helping me. All I wanted to do today was work on this paper but after I read what I wrote I just felt defeated. I don’t know if there is any salvation in what I wrote. I do know that my own criticism of the paper is what is getting in the way. I think it is stupid and doesn’t have any merit, but then I think all my “good” papers are that way. Today I got a good review on my psychological pain paper that I wrote in college. I am still trying to work out how I can go back to school. I want to be able to finish my degree. I am just working very slowly to actually getting up the nerve and doing it. I just hope that I still have time for my credits to still be worth something. It has been four years since I left college due to a psychotic break. Talk about being psycho. Books, email, and the radio were “talking” to me. I was utterly convinced that every song on the radio had a hidden message for me, that all my emails were somehow going being linked to the biggest asshole in the hospital I worked at and he was going to get me fired. While I was reading books or papers, the words were “dancing” and speaking to me in different languages that only I could decipher. Not to mention the voices I was hearing and the paranoia I was feeling from the asshole. Then when the normal meds were still not working, I had to go into the hospital again to get things sorted out because I developed another delusion that a coworker was going to kill me. I was sincerely convinced that she was. But once my meds were on board and I had to take them, it made thinking difficult for me. I no longer could distinguish my thoughts from the voices and when things were silent, I just couldn’t function. I have been hearing voices since I was five years old. I learned to adapt to keep them a secret but when you take meds that are meant to control them, everything stops and you just cannot think. I had a hard time reading and writing. I found that I would read the same paragraph over and over and not comprehend what it was. Words lost their meaning. It was a very difficult time for me and so I decided that school was causing me a huge stress and had to be cut out. I just had to focus on my jobs and getting back to good. Unfortunately, this still hasn’t happened. But I am hoping that with me not working, I can finish my degree. I just am fearful that I will become psychotic again from the stress of deadlines and exams.

sense of sensing–proprioception

Proprioception

Proprioception (  /ˌprpri.ɵˈsɛpʃən/ pro-pree-osep-shən), from Latin proprius, meaning “one’s own”, “individual” and perception, is the sense of the relative position of neighbouring parts of the body and strength of effort being employed in movement.[1] It is distinguished from exteroception, by which one perceives the outside world, and interoception, by which one perceives pain, hunger, etc., and the movement of internal organs. (wkipedia 9-27-12)

We take this for granted until you get hit with Cauda Equina Syndrome.  Cauda equina syndrome is a particularly serious type of nerve root problem that can be caused by a prolapsed disc. This is a rare disorder where the nerves at the very bottom of the spinal cord are pressed on. This syndrome can cause low back pain plus: problems with bowel and bladder function (usually unable to pass urine), numbness in the saddle area (around the anus), and weakness in one or both legs. This syndrome needs urgent treatment to preserve the nerves to the bladder and bowel from becoming permanently damaged. I took a bad fall a few months ago and could not figure out for the life of me why I fell. I was trying to enter a cab and missed it by a foot. I just suddenly dropped with no awareness as to what the hell happened. I almost took another header the other day and realized I was tired and my proprioception was off. Usually I know where my feet are. When I lost this function back in 2001, I always made a mental note of all times of where my feet were so I wouldn’t trip over them. This vanishes when you become fatigued, mentally and physically. Then your feet can cause you trouble. I realized this painfully when I fell and nearly broke my arm and sprained my good ankle, again, when I fell a few months ago. I am sure that most people are saying what the hell is it I am talking about and it is complicated to explain. How can I not know where my feet are? It is because the nerves that tell me where they are has been damaged so I no longer have the sense of where they are. A couple of years ago, while exiting work in the garage, my car would stop and I had no idea what was wrong as I was hitting the “gas”. I looked down and found that my foot was really on the brake. Thank goodness or I would have been speeding around in the garage and god knows what kind of trouble I would have gone into. The few times this has happened was again due to fatigue and less awareness, a type of mindfulness, if I dare use the word, that has dissipated as I become tired.

To lose this ability is frightening. Not knowing where your feet are is a dangerous thing. I thought that after 10+ years I had developed the sense back but my fall can tell you I have compensated for it pretty well, that is until I become fatigued. Lately I have been more fatigued but thankfully I have not had any falls or trips. Sometimes if my leg is really tired, it will drag. I just cannot bring it up to where it should be while I walk. The AFO (ankle foot orthotic) has made things easier for me to get around but it still doesn’t help with the swelling and pain that I experience every day. Today I went to my monthly pain management appt with my primary doc. I asked him what I can do about the swelling other than elevating and icing like I have been doing. He says to wear a light compression stocking to see if that helps. Problem is that they are like $40 a pair and when you have a limited budget, it is difficult to spare that kind of cash. He also just advised to keep doing what I have been doing but to try and lose weight. I was like are you fucking kidding me? I can barely walk most days and you want me to keep moving? I love to walk but I get so damn tired that it is hard to do and with my ankle swelling up on me, I don’t think I can walk more than a few blocks without pain. I have tried. I hurt and then trying to get the pain under control just about kills me afterwards. It takes me at least twenty-four hours to recover and I hate spending time in bed doing nothing but keeping my foot elevated. I am glad I bought this trapezoid sized foam elevator thingy to raise my legs to where they should be. I can get very comfortable in bed now except I cannot sleep on my back. I am a side sleeper so the elevator ends up kicked to the floor or the foot of my bed most nights.

So I had planned on going on a diet anyways. A slimfast diet. Except I can’t keep my appetite controlled. I want to eat food not liquid. So I have tried eating smaller portions. Fail. Tomorrow a friend is taking me out for dinner to a restaurant. Now I need to watch the fatty foods and salt that goes into it. I really just want to lose the weight without having to think about it but that is wishful thinking. I have always been heavy. Started in gaining weight in 3rd grade and then when I got on psych meds, I just ballooned out because the side effects of the meds make you hungry. I find that the nerve pain med I take, neurontin, will triple fold my appetite. The hungry horrors come out the next day and all I do is eat. So I limit my nerve pain med to when the pain is so bad I cannot sleep, which is usually when I take it. So far my nerve pain has not been so bad. But then I have not been standing too long on my feet for some time now. Usually if I have a day of standing too long my feet will burn and have shock pains.

knackered, short story about Cauda Equina Syndrome

This is a Copyrighted chapter in the book Midnight Demon: My Suicidal Career with Mental Illness and Cauda Equina Syndrome. All Rights Reserved 2014. Collerone, G

Cauda Equina Syndrome: A complicated syndrome that often brings more questions than answers, more despair than hope. Questions like when will I have my old body back? Will my back/legs/feet ever be normal like they were before my injury? Will my bowels and bladder ever be normal and I won’t have to constantly think about the last time I went to the bathroom. These questions are always, if not in the forefront, are always in the back of the mind of those that suffer from Cauda Equina syndrome (CES as those of us call it). It is a neurological condition that occurs when the cauda equina (horse’s tail) nerves are compressed somehow due to a trauma injuries such as a disc herniation, fragments of the vertebrae, a spinal tumor, or some other injury that compresses the nerve, such as a surgery clamp. The cauda equina nerves ends around the L2 level where the spinal cord ends. The causes of this syndrome are many and as we have 5-6 levels of lumbar vertebraes, the different levels of damage vary. The most consistent rule is that soon as symptoms of weakness, unbearable pain, and/or loss of feeling occur, surgery should happen within 24-48 hrs.
Do we recovery after this? Anything is possible. Some of us do, some are left with permanent injury because treatment did not happen or was delayed or it was simply too late to recover. Some have seen recovery after a few months, a few years, some times more than that. Some have gotten worse after surgery as surgery itself holds its own risk. One thing that has gotten to be the never ending questions is, how do I live like this? How do I live with the pain, the never ending nerve pain that no narcotic can touch? How can I live when I can’t feel myself having a bowel movement or feel myself urinate. How can live with these dysfunctions, always in the back of my mind knowing where my feet are cause if I get distracted or am too tired, I will trip over them.
It has been eleven years since my first injury. Almost six since my second. My first diagnosis happened at level L4/L5. My second was at L2/L3, higher and more disruptive. It caused me to be where I am today, disabled to a degree that is permanent, more permanent than my initial injury. I do not know if all people that suffer CES x 2 will have what I have. I just know that I hurt, that I can’t walk more than a few blocks without debilitating pain, that I have to take meds everyday to live my life with some functionality. Otherwise I will lose my mind and be on a psych ward never to be a functioning member of society again.
The past year has been hard to deal with. I finally realized that my initial injury never quite healed the way I thought I did and so left me wide open for injury when I was hit the second time. Now while I am awaiting accommodations from work, I am doing what I do best. Writing my life story so it can be used as a voice.
By being a voice I can tell people who have been suffering with this condition that they are not alone with this. They have support in their pain and despair. We all have been through the learning to walk again, the painful spasms, the night time burning and shock pains that keep us up at night. The nights of lost sleep from the constant worry of being in pain and seeing endless doctors to find no relief or some relief. My voice can help answer the questions that arrive at each stage of recovery and when there seems like there is no recovery in sight.
It is an always constant reminder that you are not “normal” anymore. You have your good and bad days but a good day usually consists of making it to the bathroom on time or having some pain relief, even if it is for a few hours. A good day might be the day where you just collapse in exhaustion and sleep the day away because you were up all night in horrific nerve pain that just wouldn’t quit no matter how many pills you popped before bedtime. I still have not been able to find the right time of taking my doses. Though it has been a few weeks since the 2-4 am pain cycle, that doesn’t mean that it won’t be back. I think most of the time I have not been feeling too much pain is because I have been out of work the last month or so. Pain has become less but if I happen to walk too much or stand too long, I pay for it at night.
Most of the time, people think that you are fine because you don’t have anything physical wrong with you. I find that to be true because other than my foot swelling up, no one would know that my leg is hurting me so bad I can’t walk far or stand for more than 20 minutes. They might see the AFO (ankle foot orthotic) but that is what helps keep my foot aligned. So far I have not been questioned on this by anyone, but then this will be the first summer I will be wearing it. I got it in early November because I do not walk correctly due to the weakness in my foot. Instead of walking heel to toe, up/down, my left foot goes heel and swerves to go back to the toes. It has pulled my muscles and tendons so badly that when they flair up, I am in such agony, that all I can think about is killing myself. And this pain was 24/7. It drove me nuts because there was nothing I could do for it, nor was anything I was taking calming it down. I was on anti-inflammatories, narcotic pain meds, neuropathic pain meds, and still I was in bone crushing pain. All the tests, MRI and x-rays said things were normal. But if I was so damn normal, why was in so much pain??
Then there is the bouncing game where you go from one specialist to another hoping to get a new treatment, new diagnosis or just plain answers but all they can do is give you no answers and refer you to yet another specialist. My neurologist is good for this. She has sent me to a physiatrist, an orthopedic, and a physical therapist which all said they have no idea what is wrong with my foot. They have no idea what is causing the pain, be it from my back or from my foot (a mechanical problem as it turned out to be).
I have come to the conclusion that despite my many attempts to find the right doctor to see for my physical pain, there isn’t one out there. My last appointment this week was the last new doc I will see in a while. I am tired of being put through the tests and the endless questions just to be told maybe this might help, maybe not but go through it anyway. Seeing as I don’t have insurance at the moment, I say the hell with it. I cannot fathom going through something that might or might not help for six weeks and then be told, well at least we tried. Nowhere in the literature did I sign up for that. AND this is a NEW form of therapy so it might really not work at all. Not everyone is the same when it comes to pain. I don’t even fit the typical symptoms of what my neurologist diagnosed me with (complex regional pain syndrome) so how am I supposed to have confidence for six weeks, oh and did I mention this is a “drug free” program. I am supposedly weaned off my pain meds. SCREW that. I can’t function as it is without them. I can’t take a shower or go down the stairs or walk unless I take them. Living with this, Cauda Equina Syndrome, post (CESp) is life altering. Throw in mental illness and you got a time bomb of suicidality you don’t even want to think about. Most of my midnight demons comes from the pain I feel at 2 am in the morning. No doctor sees a patient at 2 am unless you are in the emergency room so of course my level isn’t astronomical at 11:40 am when I see a doctor or my psychiatrist. All I can do is shoot off an email at 2 am and tell them I am hurting. Sometimes I get a response, sometimes I don’t.
I’m done with seeing new doctors. As long as my PCP provides me with pain relief that is all I care about right now because otherwise I will end up 6 feet under. I can barely stand when I get up in the morning and no one understands. I don’t understand how the medical profession can know so much science and technology yet know so little about how to treat pain. I’m just getting fed up. Fed up and tired that no one listens and cares that someone already with a depressive condition is being made to suffer because of the “ills” of opioid therapy. Granted there are people out there who have addictions but these people can be weeded out if the physician just takes a little more effort in listening than prescribing to get rid of the patient. I still long for the day when I can page a doctor at 2 am and tell them I hurting because I really think then they will understand that I am not just some nut job but a person who is truly in pain and suffering a great deal but that day will never come. I will always be the one to suffer and as long as I do, whether it be physical or mental, I will have suicidal thoughts. I know that one day I will take my life by my own hand. I think at this point I am just too tired to even do that. Yes, TOO TIRED, EXHAUSTED to take my life, to end the pain and suffering caused by the damage of tiny disc fragments that compressed my spinal nerves for 5 long days. That was all it took to wreck my life forever. I often wonder if I would have finished my degree by now had CES not enter my life for the second time. I believe that this second occurrence is what truly disabled me, physically and mentally. I have more damage than I had before because a tiny fragment was left on my nerves for 4 days after my surgery to help me when I was losing control of my bladder. That problem was solved but then because of this tiny fragment, I was left with paralysis of my left leg, the leg that is now the vain of my existence. No one knows of this cauda equina syndrome, yet no one has suffered from it twice and been “okay”. I can still walk but I am tortured by it every day. Every day my ankle refuses to flex when I wake up and now it seems I have to take pain meds just to get out of bed and down the stairs to use the bathroom. That is if I don’t have to go urgently, then it’s screw the pains meds and go one step at a time down the stairs. This is what my life has become. Not one doctor in the entire city of Boston wants to help me. Mentally I can’t really complain. I have the best psychiatrist I could ever ask for. But medically, I do not have anyone I can truly trust. People just take it for granted that after surgery they will be ok. But no doctor deals with the aftermath of traumatizing surgery and the pain that comes with it. I am sure if I go to my surgeon today he will either want to do another one or refer me to a “pain doctor” for an injection but injections in the spine have not been shown to be useful. They might work in 50% of the patients but not all and some may even be harmed by this practice. I call it a practice of negligence.

This is a Copyrighted chapter in the book Midnight Demon: My Suicidal Career with Mental Illness and Cauda Equina Syndrome. All Rights Reserved 2014. Collerone, G