Tag Archives: Disability

Never give up

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I know it’s hard.

We all have days when our CES issues are so bad that we just want to curl up in a ball and give up.

But, we can’t give up.

If we do, the CES wins.

Sure, it gets real discouraging when you hear or read the word “permanent” in relation to the CES you have had for years on end. I see that word and quickly realize that I am going to be like this the rest of my life. You can read CES articles and testimonies for hours on end and you will not find any stories of a person who had the “miracle surgery” that completely cured a CES patient of this dreaded condition after years of misery.

Sure, they have procedures and treatments that can possibly help some of our symptoms, like my own tendon transfer and spinal cord stimulator surgeries, but they have yet to find the magical “Cure CES Forever” surgery that we all dream about.

But, we can’t give up.

We can’t let the CES win.

Let CES take it’s best shots. Let it punch away on us.

CES rears it’s ugly head every day.

And yet we are still here.


Still fighting.

Never give up the fight.

Never give up.

When it seems everyone has forgotten…….

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This post may ring true for those of you that have had CES for more than a decade, and for those that have severe problems that keep you from being able to work.

I have had CES since early 1999. Despite two attempts to return to my career, my CES has resulted in my being permanently disabled and pretty much home-bound since the months right after my injury. Like many of you, I suffer from the wonderful symptoms of bowel and bladder dysfunction, crippling nerve pain, numbness, foot drop, decreased circulation, depression, etc.

I am married and have three children. In the years since my injury, my two oldest children have long since finished school and moved away from home. Now, the household is just my wife, our youngest son (age 16), and myself.

My wife works at a career in the Education Field in which she spends upwards of 60 hours a week working. Our son has school, sports, and works about 20 hours a week after school. During the school year, I am pretty much home alone during most of the weekday hours.

My family has been my greatest support during all the many years that I have been disabled with CES. Without them, I don’t think I could have made it. I have had countless days where I could just not envision going on with a life of living with this terrible “Invisible Nightmare”.

As I have written on this blog many times in the past, most of my days are ones of boring monotony where seemingly every minute of the day is filled with battling various aspects of my CES.

Because most of our symptoms are invisible to everyone else, our battles with this condition all happen internally. Others cannot see when we are having problems unless we tell them, or unless we are asked how we are doing. Others cannot see the crippling nerve pain. They cannot see the constant battle with the bowels or bladder. They cannot see the numbness and tingling that could easily drive you mad. Simply put, they can’t SEE THE CES.

But, it’s there.

It’s always there.

And it’s real easy for us CES sufferers to find ourselves in a position where we feel that everyone around us has seemed to forget that we still have CES and that for most of us, we will have it for the rest of our lives.

I can’t remember the last time that a member of my immediate family asked me how bad my pain level is. Family members come home, ask me what I did all day, to which I often reply “nothing” or “not much”, and the conversation usually ends there. Sometimes I sense that THEY wish they could have days away from school and work where they would end up doing “nothing” or “not much” over the course of a long boring day. Sometimes I will add that I have been having bowel issues to try to explain my lack of getting anything done, and again, things are usually left at that.

I don’t volunteer the fact that I am in constant pain in my legs and feet from the CES, mainly because I know the standard response will be “go see a Doctor”. What is the Doctor going to do? I have had this pain for nearly 15 years. They have tried medications, surgeries, injections, and even a spinal cord stimulator to try to ease the pain.

The narcotic pain medications did ease the pain somewhat, but they also brought horrible constipation which caused me many bowel problems on top of the bowel problems I already have. Due to this, I have not had any narcotic pain medications in nearly a year. The many spinal injections and nerve blocks that I have had over the years had no effect on my pain. The spinal cord stimulator that I have had for nearly 18 months does very little to relieve the pain in my legs and does not alleviate any of the pain in my feet.

Many days, I curl up on the couch, in pain, and watch TV for the majority of the day. I try to do as much as I can around the house. Even with my CES issues, I manage to do 90% of the laundry, dishes, grocery shopping, paying of bills, housecleaning, and yard work. Some days, I cannot keep things as clean as I would like and dishes and clutter start to pile up, which usually results in my being chided for leaving the kitchen or another room “messy”.

What I’m trying to say is there MAY be a time after many years where it seems like the whole world, except you, has completely forgot that you are even disabled and have CES.

I would trade anything in the world to be able to go off to work or school every day and live a “normal” life once again. Truth be told, I have forgotten what a normal life even felt like. I will sometimes mention that I got up at 9am on a particular morning and will get a comment to the effect of “it must be nice to be able to sleep in” or something to that effect.

Trust me, if I do “sleep in”, it’s usually because I tossed and turned half the night with the maddening pain and numbness in my legs, or I was up multiple times trying to use the bathroom like a “normal” person.

Everyone around me forgets my issues, and I have forgotten what my Pre-Ces life was even like. I would give anything to be able to just go to the bathroom normally, without my stinking bowel problems ruling seemingly every hour of my day. I would love to be able to feel my legs and feet again. I would love to be able to actually jog down the street one day. I would love to be able to just “walk” normally without this damned foot drop that causes me frequent trips and falls. I would love to be able to sit here at my computer for an hour without my legs turning purple and blue because of the crappy circulation. I would love to be able to have a normal sex life again, but nearly 15 years of sexual dysfunction caused by the CES has totally destroyed my wife and I’s sex life.

I would love to be able to WORK. Actual, out of the house, working with others, WORK.

My son bags groceries at the local grocery store. I envy him. I would give anything to be able to just bag groceries and carry them out for customers, no matter how low the pay. If only I could stand pain-free for hours and did not have the damn bowel issues which threaten to pop up, without notice, any time, any place.

Many days, I just lay here on the couch and try to calculate just how long I may end up living. I try to picture three more decades, or more, of living with this nightmare. I know that I will NEVER get better. If things hold true like the past 15 years, certain aspects of my CES will actually get worse. It’s just a nightmare with no end in sight.

And many days, it feels like I am the only one who even remembers that I am even disabled.

So, how am I doing today you ask?

“I’m in constant pain, I can’t go to the bathroom normally, I’m depressed, and for about the hundredth time in the past year, I tripped over an invisible crack in the floor and fell down, in a quiet, empty, boring house, but other than that, I am just fine”.

I appreciate you asking.

Exercise, Exercise, Exercise

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Easy to say, many times hard to do…

Especially when you have CES.

Bowel problems, Bladder Problems, Constant Pain, Numbness, Drop Foot, Decreased mobility, Partial Paralysis, etc. These are not issues that make it easy to actually get any kind of healthy exercise on a daily basis.

When I got CES in 1999, one of the after-effects was that I instantly became home bound. Many days, I was bed bound.

This resulted in my gaining weight. A lot of weight.

When I was much younger, I ran Marathons at 155 lbs.

A few years after CES, I was at 300 lbs.

I tried various forms of exercise with little results.

I tried walking around my neighborhood but the strain on my legs and feet was too great. For much of the early years, I wore AFO braces on my bad foot and these braces just tore up my foot if I walked any great distances.

I purchased an expensive treadmill for in my home. I figured the cushioned walking pad of the treadmill would put less strain on my feet and legs. Well, the pad was cushioned, but the walking was still difficult and painful.

I was at Physical Therapy one day for one of my myriad of CES-related issues and the Therapist had me ride an upright stationary bicycle. The only hard part was climbing on and off the thing, otherwise, riding it was extremely easy.

I found that if I rode the bike fast enough, and far enough, I would break a good sweat and would get my heart rate up. I climbed down off the bike and found that my legs were tired, but not hurting. I had found a way to exercise!

I bought myself a Stationary Bike and set it up in my living room at home.

I started riding it in January of 2011.

I rode as much as I could when I did not have something better to do while trapped here at home. With my health issues, there was many days and weeks when I could not ride, especially when having bowel difficulties, and I was usually only able to ride about 6-7 miles at a time before needing a break, but I would climb back on that bike whenever I could not find anything to keep me occupied.

I ended up riding over 11,000 miles in 2011 and 2012 combined.

Within 6 months of starting riding, I had dropped 40 lbs of weight.

Of course, when the CES issues would keep me off the bike for any extended periods, much of that weight would come right back, but I was able to stay much healthier when I was able to use the bike.

***I use a step stool in order to help me climb on the bike, and have stirrups on the pedals in order to hold my numb feet in place. My butt is numb, so seat comfort is not an issue, but you do have to wiggle around a good bit in order to get properly balanced while riding. Riding for extended periods does put a bit of a strain on your lower back, so I tend to not ride much more than 20-30 minutes at a time.***

In order to avoid boredom on the bike, I always ride with my IPOD blasting my favorite music, and I started doing “virtual” rides around the US and CANADA.

Basically, I picked a starting point on the map and then started pedaling. At the end of the day, I checked to see where I would be on the map and then blogged about my current location, with pictures of that town, on my humor blog that I wrote at the time.

Each day, I rode in my living room, while I was “virtually” riding from town to town across the US and Canada.

This year, I decided to fly my Exercise Bike over to the United Kingdom in order to start a tour of Europe that will take me all year. I started in Scotland and hope to visit as many countries as possible before years end. I am hoping for 10,000 miles this year, as long as the CES will let me stay on the bike.

I used to be a runner, but CES stole that from me.
I also love the activity of Hiking, but CES has stole much of that from me.
I used to love long walks around my town, but CES has stole much of that from me.

When CES allows me to climb on the bike, I CAN and DO beat the CES for as many miles as I can pedal. My family looks at me like I am crazy. I will pedal for 20 minutes or so, climb down, do other things, take a few hours off, then will climb back on and pedal another 20 minutes, with this being repeated during most of the day. Why do I do it? Because I NEED to do it in order to try to stay somewhat healthy and to keep my weight down, but also because ALL THESE MILES ARE MILES THAT CES HAS NOT STOLEN FROM ME.

A Doctor with no clue about CES might look and say “Well, how can you ride over 11,000 miles if you are disabled with this so-called terrible condition that no one has ever heard of?”

I would answer that by saying….. “Yes, I rode over 11,000 miles in two years on an exercise bike, with CES, but without the CES, maybe I could have ridden a REAL bike twice that distance”.

Out of the 730 days of the last two years, I was able to ride on about 300 of those days. As you can see, CES won the majority of the days by far and kept me off the bike. But, for those 300 days, I WAS THE WINNER.

What forms of exercise have YOU found that are possible with CES?

Please share other forms of exercise in a comment so others can give them a try.

Any exercise is GOOD exercise.

I urge you to try to find what exercise your body can tolerate with your CES issues and try to do that activity as much as possible.

I am tracking my “virtual” progress across Europe on a new blog that is here. My European CES friends might want to watch outside their windows because sometime this year, this Idiot from Texas, on a Exercise bike, might come pedaling down your street.

A Question about being born with CES

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**The following comment from reader “Cloud” appeared on another of my CES posts and I thought it might be useful to make this comment into a post so this reader might get some answers to his question. This regards something I have not read up to this point about CES, the horrific prospect of actually being born with the condition. If anyone out there has any information related to being born with CES, please let me know. Thanks.

I was born with spinal issues – numbness waist down , I did not walk, crawl, sit alone until age of 5. Then age of 12, I had my first bout of legs going numb, peeing on myself etc. This occurrence has occurred off and on for years.

I’m 50, so you can imagine how many years I’ve dealt with this.

In 2003, TWO Neuro-Surgeons said they would NOT put me through the risk of being paralyzed. It was 110% chance I would end up paralyzed, 75% it would occur on its own. They chose to let nature take its course.

They diagnosed me as being born with Cauda Equina Syndrome .

In the past 8 years I haven’t been able to work beyond 30 hrs due to pain. Then this year – June, after a 3 hr road trip, worse pain imaginable just from sitting. (The first), and then August-Sept I ruptured L5-S1 , not sure if it occurred at work or home. The New Neuro-Surgeon seems to be all gung ho – about doing surgery.

My Gut Tells me don’t do it……

Has anyone else been born with it?

A Cruel Dream that I Have……….

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There is a cruel dream that I have…….

That I am sure most of you have also shared.

Whether you have CES, another Chronic Illness, or whether you are in constant pain on a daily basis….

We have all had these same thoughts on many occasion.

A little backtracking before I get to the dream.

Whether it be CES or Chronic pain…

Whether it be in the USA, Canada, the UK, or some other country…

The truth is that we treat damaged cars better than damaged human beings.

Case in point:

In most countries, you have Auto Insurance to protect your vehicle.

Your car gets in an accident.

You call your Insurance carrier.

You tell them your car is damaged.

They arrange to have the car quickly inspected by an adjuster.

The adjuster determines that your car is indeed damaged.

The insurance company then pays for you to have your car repaired, or even replaced, often within 1-2 weeks after your accident.

Then we have actual human beings.

Something happens and you end up injured. You now CES, another Chronic illness, or now am in chronic pain.

You see Doctors.

The Doctors determine you are indeed injured.

You go to whatever agency in your Government that handles benefits for the disabled and injured. You apply for those benefits.

In most cases, you end up waiting MONTHS or even YEARS before you finally are awarded benefits, if you are awarded benefits at all.

I have read countless comments from other CES sufferers out there, no matter what Country they reside in, that are having nightmares in trying to get the benefits they deserve from their own Governments.

We will pay to fix a damaged car, seemingly in the blink of an eye, but will drag our feet forever before paying to take care of a damaged human being.


Well, in the case of CES or Chronic Pain, it is because we have an invisible monster lurking over our shoulders at all times.

We are like the young child who wakes up screaming in the middle of the night, screaming for his/her parents, telling them that there is a scary monster living under the bed, and that the monster wants to eat the child…

The parents, of course, look under the bed, see nothing, and then calmly tell the child that everything is alright, go back to sleep…..

The child continues to wake up screaming every night.

The monster is real. They see it. They know it wants to eat them. Why do the parents not understand this?

Because, the parents cannot see the monster.

We CES and Chronic pain sufferers are saddled with an invisible monster that most people cannot see. The vast majority of our symptoms are invisible to everyone but us.

We go to our Government agencies, seeking assistance for our disabling symptoms, we list all these disabling symptoms, and then we are met with a huge “PROVE IT!!” type response.

Many of our symptoms, pain being the main culprit, cannot be proven.

We spend the rest of our lives spending endless days trying to PROVE to the outside world that our monsters do indeed exist.

Like I have said on many occasions, like many of you, I look pretty normal, health-wise. I have a limp due to my foot drop, my left leg is atrophied due to nerve damage, but other than that, I look HEALTHY. Like most of you, my problems are all internal, hidden from public view. I have hidden monsters.

For the benefit of all these people and agencies that question the existence or disabling characteristics of our monsters….

I have my cruel dream.

To the person, agency, or Doctor that is thinking over the question as to whether or not I am truly disabled, and whether or not I should receive benefits…

I would wish that they live ONE WEEK in my shoes.


ONE WEEK of near constant pain in the back or in the legs.

ONE WEEK of sleepless nights due to the pain.

ONE WEEK of going to stand up from a chair, only to lose control of your bowel or bladder.

ONE WEEK of being out in public when you lose control of your bowel or bladder.

ONE WEEK of wanting to be intimate with your partner, only to find that the “sexual areas” of your body are completely numb.

ONE WEEK of hobbling around on a bad foot, or two bad feet, that are crippled with the effects of Foot Drop.

ONE WEEK of having many parts of your lower body completely numb. A WEEK of not being able to feel your feet or your shoes, your butt, your groin area, your lower back, etc.

ONE WEEK of crippling Depression brought on by the fact that you are constant pain, are constantly worried about losing control of your bowel and bladder, you have difficulty just walking across your home, and the belief that most people probably think you are just a whiner and complainer who is exaggerating everything since they cannot see most of the symptoms you CLAIM to have.

If only these people could walk in our shoes for ONE WEEK!!

Then, maybe…. just maybe…..

We could get treated as well as damaged cars.

We could be injured with CES, have this verified by a Doctor, and then have our Government agencies pay us the benefits we DESERVE…..within 1-2 weeks just as if we were a damaged car…..rather than dragging out our cases for months, or years, and without making us go through miles and miles of red tape and paperwork in order to prove that our monsters are indeed real.

We like to say that we would NEVER wish CES or Chronic pain on anyone….

Well, I’m changing my wish…

To all those that doubt us, I do WISH they would spend a week living in our shoes.

I seriously doubt that they would enjoy the experience.

That’s my dream!!

A Question: Venous Insufficiency and Blood Clots

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Does anyone else out there in CES-Land suffer from Venous Insufficiency as a result of their CES?

In all my surfing of CES-related materials, I have found very little mention of this condition in relation to CES patients.

My CES nerve damage has affected my left leg and foot much worse than my right leg and foot. Ever since I woke up from the surgery that crippled me, I have had limited movement in my left foot and ankle, resulting in immediate foot drop, and I have also had numbness and nerve pain issues to quite a severe level in that foot and leg. Right from the moments after the surgery, it was obvious that the circulation had also been damaged in that leg and foot. My left leg and foot were always purple and swollen, whereas my right side appeared pretty much normal.

I got my first blood clot (DVT) in my left leg about 1 month after my surgery. I spent a week in the Hospital undergoing blood-thinning treatments while worrying myself sick that any slight movement might dislodge the clot, travel to my lungs, and kill me.

After that first clot, I was put on daily doses of blood thinning medications AND was prescribed anti-embolism stockings to wear in order to help the circulation in my legs.

I got my SECOND blood clot in that same leg three months after my surgery, and after I had been on medications and wearing the stockings for two straight months. Back to the hospital for another week, and another week of worrying that any slight movement might kill me. The Doctor was shocked I had gotten that second clot, considering I was taking every precaution, including medications, in order to prevent another clot.

Most worrisome with both clots was that due to the CES symptoms, I was unable to recognize many of the symptoms of the clots themselves. Clots in the leg are usually very painful, whereas my legs were basically numb most of the time due to the CES. The pains I did get in the leg were due to the nerve issues courtesy of the CES, I never felt the pain from the clot itself. The clot will often cause your leg to swell noticeably, and also the leg will turn red, but I had those symptoms from the moment I woke up after the surgery.

This ended up being the main factor that killed me ever being able to work again. I was told to stay home, rest, and hope that my condition improved, meaning the circulation would have also improved, and that I could hopefully then resume my career. My condition never improved. All the CES symptoms persisted, along with the horrible circulation in my left leg.

** A specialist relayed to me that the nerve damage to my spine was so severe in the nerves that lead to the left leg that the leg was not getting the necessary inputs from the brain to pump blood back up towards the heart, resulting in the blood tending to pool in my left leg and foot. **

I have been taking large amounts of blood thinning medications every day since that first clot in 1999. I have been on these medications for nearly 14 years now. Taking high doses of blood thinners is fun in itself. The smallest bumps into an object turns into massive cuts and bruises. Just brushing my teeth often makes my gums bleed. Getting an injection of any kind often results in a good deal of bleeding that still freaks out all my nurses. Any type of surgery requires that I be off these medications for at least a week in advance so that I do not bleed to death on the operating table.

I’ve resigned myself to the fact that I’ll be on these medications the rest of my life. I have not had blood clot #3 YET, and have not had a clot since June of 1999, but I like to think that the current high doseage of the medication, along with my practice of frequently laying down during the day has allowed me to beat clot #3 thus far.

My left leg is still crap, is still frequently swollen and discolored, and is the cause of all my walking difficulties thanks to the severe drop foot.

Has anyone else out there run into any problems with their circulation since getting CES? I know mine is directly related to the CES because I never had a circulation problem in my life prior to that surgery.
Have any of you also suffered DVT blood clots in your legs due to the CES?

I’m just curious.

How are you feeling today?

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How are you feeling today?

Probably the single most important question that I wish family members would ask me on a daily basis.

Do you ever have days when you are hurting, or are battling other aspects of your continuing CES nightmare, where the only people to ask you how you are doing that day are your online CES friends or other friends outside of your family?

If you have been battling CES for years, do you sometimes feel like people in your family have somehow forgotten that you are hurt?

Do you sometimes get the impression that your family is somehow annoyed with your continuing health problems?

I’m no Psychologist, but I get these feelings all the time in my own battle with CES.

Like most of you, my days are a constant, never-ending struggle. Whether it be battles with chronic pain, difficulties walking, bowel issues, etc… it truly never ends.

I cannot remember the last day that I felt 100% completely “normal”. This is most likely due to the fact that I have been like this since 1999.

Most days, during the school year, I am home alone for the majority of the day while my wife is at work and my son is at school. As such, I fight my daily CES battles alone. Most days, my family will come home and we will discuss the wife and kids days as we eat dinner. I usually have nothing to add to the conversation, in that most days I do nothing of note other than trying to keep the house clean, pay bills, do laundry, etc. My daily “job” is fighting the effects of CES. Talk about a depressing job!

Most days, no one asks me how I am doing physically, or mentally.

They all know that I am in near constant pain, that I have bowel problems, that I have trouble walking, and that I have battled crippling Depression for years.

Yet most days, the only inquiries I get as to how I am doing, come from my fellow CES sufferers or from a small group of online friends who have been reading my humor blog for years.

I’m a walking contradiction.

On one hand, I’m a very private person when it comes to my health issues. I really don’t like talking about them in person, with anyone. I don’t really walk around just volunteering information about what particular health issues are giving me problems on any particular day. Bottom line: I don’t like talking about my CES.

On the other hand, I have a tremendous need to know that people still care about how I am doing. Even though I don’t like talking about my CES struggles, I want those around me to at least ask me how I am doing. This at least reinforces the knowledge that people care.

I know my family loves me more than anything. I know they care about my health and about how I am doing.

I think that after so many long years, they have just gotten NUMB to the whole CES nightmare. Day after day, week after week, month after month, and year after year of the same old nightmare, just gets old after awhile.

They can ask me how I am doing on any particular day and they would most likely get the same answer. “I’m hurting”.

There is nothing they can do to alleviate my pain, nothing they can do to help me walk better, and nothing they can do for the bowel issues.

I would bet this leads my family members to feel totally powerless.

So, after so many years, my health is just what it is. I believe they think there’s no need to ask me how I am feeling every day. They already know what the answer will be.

But, that doesn’t mean that I still don’t desperately want loved ones to ask me.

CES is lonely enough as it is. It does help us immensely to know that people in our families still care about how we are feeling on any given day.

So, how are YOU feeling today?

Freedom from CES

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** This post is actually a wonderful comment that CES friend Michelle left in response to my earlier post about hiding from CES. This was such a beautifully articulated and thoughtful comment that I thought it would make a great post in itself. In this comment, Michelle lays bare some thoughts and feelings that we should all keep in mind when it comes to our daily battle with CES. Thank you so much Michelle! **


Ahhhhh- Freedom from the nightmare that is CES!

It’s more than a wish- it’s a daily goal! ANY little “reprieve” we can get we savor as if it is the most buttery piece of steak on our fork to bless our palate.

Take that freedom EVERY minute you CAN and do NOT apologize for doing so!!!

Though I am CONSTANTLY reminded of the chains that bind me to CES physically (because of the incessant and extreme physical and neurological pain) I STILL can “escape” the Demons of CES mentally at times.

The psychological “damage” that CES does to us- from reminding us of our limitations and driving us into the depths of severe depression- is so relentless and extreme at times that we often feel we CAN’T escape our shackles.

The chains bind us to it so deeply that at times, and I shudder to think of this because of the TRUTH involved, some of us may consider (or even just “think about it”) that our only “real option” for relief and escape would be death- a permanent solution for “freedom”.

But there is ONE area where we CAN have the freedom we crave (and SO deserve!) because WE can have control over our thoughts, feelings and emotions. This is not to say that depression should be minimized or thought of as to be our “fault” IN ANY WAY because we didn’t “control” it. NO!!! On the contrary, we CANNOT control depression mostly because there is a chemical imbalance within our bodies that “helps” to push our negative, helpless and hopeless feelings even further down.

When we are NOT suffering from the evil Demon of depression, we CAN control how we respond to ourselves. And we CAN learn to LOVE the “new us” that was created (out of our will and control) by CES. For example I can learn to LOVE myself despite the fact that I CAN’T run. I CAN learn to love that I have a very creative mind and I can use it -and that is something CES CAN’T take from me.

THOSE are my moments of “freedom”.

They may be short lived at times but they ARE tangible, sought after, cherished. My freedom is in my mind where I can rock climb, run, go caving and hiking without any problems.

In my mind I can do anything I’ve ever WANTED to do.

In my mind I can find peace and contentment at times.

In my mind I CAN be FREE- even if it is for only a moment.

In my mind.

Hiding from CES

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I know the title of this post is misleading and false. You can’t hide from CES. You can try as hard as you might, but CES will always follow you without fail.

That doesn’t mean that we can’t TRY to hide from our CES on occasion. Sometimes, hiding from your CES can give you back a small piece of the life you once enjoyed. Rest assured though, these periods are brief, because no matter how hard you try, CES will always succeed at resuming control of your life.

I have been hiding under my CES rock for quite awhile now. I figured if I hid long enough, maybe the CES Demons would give up waiting for me to come out and would then go away and leave me alone.

As most of you know, I am dealing with the continuing saga of my severe foot drop that has made simply walking into a real chore. After a failed surgery and after trying every kind of brace on the planet, my Surgeon wants to fuse my lower leg, ankle, and foot together. Given my poor circulation in my bad leg, this would require two months of bed rest after my surgery. The prospect of being trapped in the bed for two months, with the horrendous bowel problems that CES has “blessed” me with, is just too much for me to bear.

Like many of you, I have quite a few bad days where my bowel issues control seemingly every waking minute of each day. I do NOT want to endure those bowel nightmares while confined in my bed. I know this surgery is my last hope of saving the foot before amputation becomes my only alternative, but I just can’t force myself to give the Surgeon the OK to schedule the surgery.

A few weeks ago, I went into my closet and was shocked to find a brand new pair of shoes that had never been worn. I had bought them quite a while ago, right before one of my recent foot and leg nightmares, and had never got a chance to wear the shoes. I put them on. I was able to walk fairly well because the brand new shoes still offered a great deal of support. I knew that within weeks, the shoes would start to break down as my ankle and foot struggled to roll over as I walk. I figured I had maybe three weeks of walking with these new shoes before I would be back to hobbling along like a crippled 100yr old man.

I then thought that maybe I could just buy a new pair of shoes every three weeks or so. I could look at it as a new medical bill that had to be paid each month. I was just putting off the inevitable, but at least I could walk fairly well for a few glorious weeks each month.

I wore the new shoes and happily walked better than I had walked in months.
It was heaven to go out and walk and NOT be constantly reminded of having CES.

I tried to block CES from my mind and life completely.

I stopped visiting the CES support groups on Facebook, stopped reading about CES on the Internet, and basically just did everything in my power to keep CES out of my mind.

Those bowel problems? “Must be something I ate..”
Those constant pains in my back and legs? “Must be that truck that hit me”

I’ve tried to pour my energy into new posts on my humor blog, using the one trait that CES has not damaged, my warped sense of humor.

But, like I said before…. you can try as hard as you want, but CES will not let you escape. The bowel or bladder problems will come screaming back, the nerve pains will strike, the walking difficulties will hit you, and the Depression demons will again track you down.

That’s not to say that I don’t highly recommend trying to escape CES whenever you get a chance. Enjoy your brief periods of freedom and brief episodes of happiness.

I’m a realist. I know the new shoes will break down on me in ever quicker fashion, and that my foot drop issues will soon make it so that NO shoe or brace will help me, thereby making this radical fusion surgery my only available option.

I know that at some point, I’m gonna have to just face the fact that I will have to endure the two months on the bed and that I can’t escape that.

I know that if this surgery fails, the only option left is amputation.

But, until the day comes when I break down and schedule the surgery for the fusion, I’m gonna limp around fairly well on these fairly new shoes, and I’m going to continue to try to hide from the CES demons that are looking for me.

I thank all my CES friends out there and apologize for suddenly disappearing off the face of the planet. I totally appreciate how much we all need the support and understanding that only fellow CES sufferers can offer us. Hopefully, someday, in our lifetimes, Medical Science will find a way so that we CAN outrun our CES Demons, hopefully allowing us to have our old lives back. Until then, I’m still going to have the occasional episodes where I try like mad to hide from my own CES.

One day I will win.

As will you.

CES Specialists… Do they even exist?

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You know, I bet you could probably count the number of Doctors that solely specialize in Cauda Equina Syndrome, and nothing else, on one hand. And that is worldwide. I really think that so-called CES Specialists do not, for the most part, even exist.

The closest I have ever found, in my case, was a Neurosurgeon in Indiana who treated many CES patients, but CES was NOT the main focus of his practice.

If you are like me, you have CES, and you also have a pretty substantial list of Doctors that you see for the myriad of symptoms that CES has given you.

In my case, I have a primary Family Doctor. She sees me for all Non-CES related health issues, and also treats my CES bowel incontinence issues and monitors my blood-thinning medications.

I have an Orthopedic Surgeon that deals mainly with my Foot Drop issues, and with the two fractures in my feet and my ankle that I have gotten as a result of my CES-impaired gait.

I have a Pain Management Specialist that monitors the Spinal Cord Stimulator that was implanted in my back, in order to reduce the constant pain related to my CES, and he also monitors my pain medications.

I have a Neurologist that deals with all the issues related to my chronic nerve pain. When needed, he has given me Epidural Injections in my spine to try to aleviate some of the electrical-shock pains which frequently drive me insane.

I have a Dermatologist that treats the Skin Cancer I have been afflicted with for the past decade. The Skin Cancer is not related to the CES, but when cancers have to be surgically removed from my legs, which have poor circulation due to the CES, certain additional precautions have to be taken.

I have a Urologist who sees me for Bladder-related issues due to the CES.

I have a Psychologist who I see for Depression related to my ongoing battle with CES.

That’s 7 different people I go to. That does not include the Physical Therapy folks I see after each surgery.

I bet most of you probably see multiple Doctors as well in order to battle your CES.

Like many of you, I seem to spend most of my time each month bouncing from one Doctor to the other.

Each Doctor knows that I have CES, but for the most part, they really know very little, if anything, about the condition, aside from what they have learned from me.

I would bet that I am the only CES patient that they currently treat.

Each Doctor just concentrates on their one area of specialty. The Surgeon deals with the foot drop. If the foot drop suddenly starts causing new neuropathic pains in my foot and ankle, then I have to go see the Neurologist. If one of the Doctor’s prescribes me something that causes Diarrhea, which is bad when you have incontinence issues, then I get sent back to my primary Doctor to deal with the incontinence.

It’s a non-stop routine of bouncing from one Doctor to the other.

Apparently, we are “lucky” enough to be saddled with a condition that is so rare, that even today, their are not really CES Specialists where you can go and be seen for ALL of your CES problems, in one office.
You can look at the directory of a major Medical Facility and will see Doctors specializing in every condition under the sun, including many that you have never heard of, but I doubt you will find a “CES Specialist”.

You might have such a Doctor if you live in a large city, but if you are like me, and you live in the country, you are up a creek. I’ve had CES since 1999 and have been bouncing around from Doctor to Doctor ever since.

I don’t think that will ever change.

Have any of you been lucky enough to find a CES Specialist? Someone that focuses most or all of their practice solely on treating CES patients? If yes, if you don’t mind listing the name and location of the Doctor, it might be useful to other CES sufferers in your area that might be looking for such a Doctor.