health

Socially living with CMT continued

2583_1112590137331_1304229188_30330927_7939951_n The next months were some of the best in my life. Times like these were what I had been aimlessly searching for, and my time was now. Still yet, I had the rather large task of keeping my health – specifically CMT, a secret from the love of my life. Masking my daily functions is a big deal, but it was worth the pain and discomfort to me. Our days usually consisted of talking. Some days we planned picnics and fishing trips. All in all, it was most wonderful, but the pain was still present, tossing me around, controlling my life and causing me to hide truths about myself, but worth enduring just to see her smile.

I definitely had stronger feelings for her but I struggled to keep them at bay, because certain circumstances applied. We both had voiced our opinions about a relationship, and both agreed that just staying “friends” was what we both wanted. She had just left a nasty relationship and I had been bouncing around with no happiness in sight. When we spent time together things just seemed perfect. I didn’t want to accept this at first, but I really could not fight off my feelings for her. After a few weeks had past with some quality time invested I saw a perfect opportunity to stake my claim. I knew, deep down, this could be a big mistake on my behalf. What if she said no? What if she didn’t feel the same way as me? These two questions were beating me up inside so I decided to bite the bullet.

Knowing she planned on returning to Florida in a few months I took a huge risk. Finally one day, I just swallowed, took a deep breath and looked up at her and said, Minda, (I paused), will you be my girlfriend? She was shocked, I’m sure, hearing that question coming from me after I had clearly stated I was just not interested in a relationship at the time. She looked up at me, smiled and said, “Yes!” Wow, I have yet to ever describe that feeling accurately but, if I had to I would use one word, it would be AMAZING! That night I was riding a high and feeling the best I had felt in years. Later on that night she said, “I never thought you would ask!” I thought to myself, if I had known you felt that way, I would have asked a long time ago! I knew this was the girl for me, never second guessing the decisions I had made.

After a few weeks, I decided to move in with her and her family so we could spend more time together. This was definitely an easy decision for me to make but, on the other hand my health and worries were extremely hard to hide. I constantly considered how I would do things so no one would ask about my feet. Even so, the occasional question would come up, someone asking me, “Why are you walking like that?”, or, “Did you hurt your foot?” I would quickly respond in a way so the question would be forgotten. These stressful thoughts often clouded my mind, distracting me from the important things happening in my life. Still, I was very adept in masking my pain and hiding my physical decay.

I kept a bandage and ointment close to me and my feet pretty much all the time, always keeping my feet hidden as to avoid questions about them. The pressure ulcers were becoming larger and much worse when they reoccurred. I counted on my family members to obtain my oral antibiotics used to treat the infections in order to avoid the doctor visits that would blow my cover for sure. Anymore, I was terrified for someone to even say the word “doctor.” But the pain was unbearable at times, sleep was almost nonexistent, and plain and simple, my life was deteriorating. Yet I had plans for Minda and me. I was determined to let nothing stand in my way, not even my sickness.

I was becoming really overwhelmed by everything happening at work and at home. My job was physically demanding and left me drained by the end of the day, not even wanting to be social at all. My feet hurt so badly, by the end of each day I found myself sitting down and thinking of any excuse to stay home. Pretty sad to tell you the truth, I was once a very social guy, on the go all the time. Now, I felt useless and non-deserving of the special person God had blessed me with.

After a few years together, we moved into a house we could call our own, home sweet home. We spent many hours working on our new home, we were so proud and feeling accomplished. Painting, sanding, and cleaning were very hard for me to do. Moreover, I was always dreading even a walk outside to the mailbox. I was in a lot of pain. Even so, some days were better than others. It was during this time we became engaged and started planning dates, looking forward to the big day. My life was coming together yet at the very same time, falling apart and nobody knew this but me. I felt completely alone yet I had tons of love and support all around me. My decisions were becoming my demise but, I had so much to live for and a great person in my life who would do anything to keep me safe, if only I would be honest with myself and with her, and let her into my secret, pain filled world so she could help me.

Socially living with cmt

2583_1112631178357_5656295_n My daily life became more challenging as time passed. Not a day went by that I didn’t wish I was someone else — with a love for life, more spring in my steps, and the will to make and accomplish goals in my life. Sad to admit this. I strived to make the best of what I had to work with. How I handled my physical disabilities was totally my choice, but keeping my problems a secret created an extremely difficult life. I made certain I looked fine – completely normal — to everyone. I kept Charcot Marie Tooth a complete secret – no one knew my condition, not even the doctors. I stubbornly ignored all the warning signs and symptoms. That was the life altering mistake I would later regret.

I lived with my grandmother, a single young man too embarrassed to let others know how I really felt – scared, overwhelmed, in so much pain. I was missing the best days of my life, spending most days in a chair, my feet elevated, nursing yet another infected wound that had flared up on one of my feet. Briefly, my feet would eventually take a turn for the better, but a few weeks would pass and, sadly I would be in pain and sporting an open wound yet again. These open sores are very difficult to explain to people who are not familiar with neuropathy. The feeling of no feeling, complete loss of sensation in your feet, yet at the same time, constantly throbbing in pain, falling and pitching, and just plain miserable. How do you explain no sensation yet throbbing pain simultaneously? When I developed an open wound, I could never feel it forming. I would notice a soiled sock and instantly my heart would drop. I spent more time searching for a place to prop up my feet and less time enjoying my young life. I imagine people assumed I was an introvert, a recluse, preferring to stay alone and inside even on an inviting, warm summer day.

I turned to social media to for most of my teenage life. The internet was a Godsend to me. I could sit and recover, yet be plugged into an active life. As a young man, I had dreams of becoming successful and meeting someone who would make me happy. In an odd sense, this made me happy and I felt active again. I made lots of internet friends who only knew me as being a funny guy, always joking and full of life. My friends never suspected the funny, full of life guy was hiding tons of hurt and anguish. I made sure to keep my distance from people, never revealing how sick I had actually become. I wondered if I would ever meet a special lady with whom I could be 100 percent “me”. There was always going to be that fear of pushing away someone for whom I cared. These are thoughts a young man should never have to experience.

I received a message via. facebook from this beautiful girl I had never seen before so instantly, I became overjoyed and hopeful. We communicated back and forth, I put forth all the witty charm I could muster and finally said the words, “would you like to hangout sometime?” A reply of yes, and I was glowing with hope yet nervous she would discover my secret CMT disease. The next day I jumped in my ol’ truck and was on my way to pick her up for the first time. I carefully planned a date that didn’t involve anything physically demanding. I sure didn’t want to give away my bum health immediately and risk pushing a good looking woman away from me. We rode around for hours just talking, it seemed so nice to finally connect with someone and seek comfort. For the meantime, my mind was at ease, not pondering thoughts about health and wellness. For the first time in a long time I was dulling the pain with happy thoughts.

That night, I had no intentions of developing feelings for her but I did. I honestly could not stop looking and smiling at this beautiful girl. I was being torn between a great girl and a degenerative disease. I chose the girl and decided to try and hide the cruel effects of CMT. I could not risk losing this special person. I had no idea what a meaningful blessing she would be to me. Lord knows I was occupying my mind with dreams and hopes of joy and not poisoning my thoughts with CMT. My life’s problems were beginning to simplify or so I hoped so…

A day in the life of me..

cold Most peoples’ daily routines start with coffee and breakfast. A day in the life of a person with CMT varies quite drastically and can be rather challenging. Please let me explain.

If we’re lucky, we had a great night’s sleep, and we need sleep and rest so badly to counter the naturally occurring fatigue plaguing people with CMT. Consistent restful sleep is critical, providing the energy to face the day. People with CMT desperately need lots of sleep. Unfortunately, we very rarely, if ever at all, get a fraction of the sleep we require, almost never, actually. I constantly toss and turn all night, as do most people with CMT. My arms and legs burn and ache, yet at the same time, are constantly freezing cold on the inside and feel extremely restless. Many nights, I just give up on the sandman completely. Many people, including myself, are caffeine addicts – morning coffee makes facing the day without sleep somewhat more tolerable. Most people shuffle into the kitchen, still half asleep and prepare a pot of coffee without even thinking about it. I reach for the coffee filters and the battle begins. My fingers will never separate just one thin filter – the filters all stick together. Wrestling with the stack, I eventually get one or two or some filters to separate. Good enough. I insert the filter(s), struggle with the lid on the coffee container, finally wrenching it off the container, sometimes spilling the contents, sometimes not. People with CMT have very little use of their thumbs and forefingers. A dog could make coffee just as successfully, a raccoon or a monkey probably more efficiently than a person with CMT. Scooping the coffee into the filter is yet another challenge. Precariously balancing the scoop, I slowly fill the filter with coffee grounds, and start the perk, not a matter of seconds, rather, this takes minutes to achieve. People with CMT learn to add precious time to every task.

Beep, Beep its go time! Coffee is ready. Yeah! I pour a cup, nothing quite like that coffee aroma so early in the morning, or that first delicious taste! A little bit of Heaven, especially after a long sleepless night. I grasp my mug, like I’m clutching it with paws, which, pretty much, is exactly what I am doing with my minimal to useless thumbs. Atrophied muscle in my hands renders the mug too heavy to hold. I must actually make a mental note to grasp the mug tightly, even though I cannot really feel it. This is also somewhat dangerous – this is hot coffee and the heat of the mug will burn my hands, but I can’t feel the danger, because I cannot feel the signal of pain. As I cannot feel the pain, I inadvertently forget it could be dangerous. Holding a coffee cup is second nature to most people. Only people with a neuropathy like CMT must mentally tell their hands to grasp the cup while being mindful not to burn their hands in the process.

Now I’m hungry. My favorite breakfast food is cereal. I walk to the cabinet and pull out a new, unopened box. Great, I think to myself, here we go again. Breaking into the glued cardboard is difficult enough but the plastic bag containing the cereal is my true nemesis. The cereal bag and I go to battle several times a week, usually ending in the bag’s utter demise. I completely destroy the bag attempting to open it. This is a typical site gag on T.V. but in real life – it really isn’t all that funny. I paw futilely at the bag which ultimately splits it in two, sending cereal flying, making a mess. If the bag holds at all, it is no longer very useful, resulting in stale cereal next time. Just a day in the life. Right now, you are thinking, “why don’t you just use scissors?” Good question. Stubbornly, for once, I expect something to happen the way it should happen, the way it happens for most people, using no extra steps or preparation. Definition of crazy – doing something the same way over and over and expecting different results. That’s me and those blasted cereal bags. Just once – open easy.

Plastic bags, ziplock bags (without the actual zippers), paper grocery bags without handles, large plastic garbage bags all have their own, special, evil annoyances. Opening bags causes frustration, but that chore pales in comparison to screw off lids on jars. People with CMT break a sweat trying to open jars – heck, sometimes we break the actual jar! For us, removing the jar lid without assistance is pretty much impossible. Those of you with CMT reading this blog are nodding right now. We spend much of our days wrestling with bags, prescription bottles, screw lids on jars, pull tops on drink cans. People with CMT become very Darwinian in their thinking. We gotta be smarter than the container if we want to eat or quench our thirst!

Daily living presents challenges but for every challenge, I manage to Darwin a solution. Incorporating different inventions, simple or complex, help me adapt to each daunting task, be it cereal, coffee, or tying my shoes. My pocket knife rocks. This is my favorite tool. Forgetting to bring it with me everywhere completely complicates my day. Rarely used for cutting, this tool provides the dexterity required for picking up objects dropped on the floor. Coins, keys, anything with a flat ¼ inch height or less are just miserable to retrieve. Without the assistance of my pocket knife, I don’t even bother – the object usually stays on the floor. Unless I’m extremely lucky, bending down to make a quick snatch doesn’t happen very often. More likely, I bend over and make several attempts to grasp the dropped item, running out of breath, all red faced and gasping, then stagger backward, and occasionally, fall. Other people look at me like I’m faking something or drunk. I get so embarrassed and frustrated. People assume I am angry. I’m not mad at all, just frustrated, and embarrassed.

Pull tabs are pried open with anything handy – a key, a fork, a writing pen. This doesn’t always go as smoothly as planned and either leaves me sticky or smelling of the can’s contents. I love my oversized keychain. I mean giant sized keychain — so big, it barley fits in my pocket. My hands can manipulate this monster keychain and I can fish my vehicle keys out of a pocket every time.

Honestly, the very best, tried and true tool I have discovered, a tool guaranteed to always work every single time is tenacity. I never give up. Ever. If I cannot achieve a task one way, I try another way, then another, then another. I will succeed and revel in my earned victory of success, big or small. The victories add up, so the positives add up. There’s always a pony in there somewhere.

Out of my hands, CMT and me.

cmt handsI’m pretty sure by now my friends following this blog are beginning to get it. I was constantly in pain, completely beat down, and losing my sense of direction and interest in life. I was extremely dissatisfied and very depressed. What do you do in a car with no steering headed down a hill? You ride the brakes hard, which only serves to cause more damage to the car. This was my life at this point in time – a car without steering and me so desperately riding the brakes smoking hard, grinding them right down to the rotors. I was living on borrowed time with my legs and feet but I haven’t even begun to share the problems with my hands…

As the CMT community understands, our hands give us a very difficult time, too. My hands look funny just to be bluntly honest. The muscle tissue connecting my thumb to my hand has vanished. This is a CMT trait called “muscle wasting”, and becomes progressively worse with time. My fingers want to do that “claw” thing — draw into me when I lay my hands on a flat surface.

Often, the simplest daily routines become a nightmare. At age 16, I noticed small things others might not even notice but these incidents set me apart from all my buddies at school. I could no longer hold eating utensils correctly, with the fork or spoon in my hand, grasped gently with the thumb and index finger, palm facing toward me. Instead, the only way I could manipulate an eating utensil would be to awkwardly clutch the fork or spoon like a gardening trowel, so embarrassing, like a mannerless caveman. If I did not hold it like this, I would drop it. I’ve since attempted to modify my grasp of eating utensils, but sadly, this is what I can manage so I accept it. The fatigue in my hands is really horrible, especially in the colder temperatures. Try squeezing a tennis ball really hard, repeatedly for 3 minutes, as vigorously as you can. Now hold a fork properly. You might sense the constant state of fatigue in my hands every day.

Similar to the pervasive fatigue affecting my lower extremities, I suffer equally with my hands, and the muscle wasting progressively takes its toll on my physical well being as the years pass. Charcot Marie Tooth causes persistent numbness and tingling that never goes away. This numbness and tingling – more like a burning sensation, reminds me of when we were little kids and someone would grab your forearm with both hands, twisting the skin in two different directions at the same time as hard as they could. If you ever experienced this, you know it burns like crazy. Well, the pain, tingling and burning I experience constantly feels just like that, only some days are much worse than others, and it never stops. Cold temperatures intensify the situation. If my hands get cold, they take a lot of time to warm up and ache and burn uncontrollably, like a really bad sunburn from the inside out. On a good day – I merely experience a pins and needles sensation like when a limb has been “asleep” and is “waking” again.

Cold temperatures seem to be my worst enemy and limit me to doing things a man just enjoys doing. I love to hunt and fish but the issues with my hands make it very difficult. My friends know I will keep on doing what I love regardless of these problems and this pain. I am very skilled at appearing completely “normal” — just an average, ordinary guy. “Masking” uses a great amount of energy in and of itself, simply attempting to fool the world and appear “normal”. I am actually struggling in my own little world.

Then there is this: my hands will actually cease working from time to time. Absolutely stop working, unable to do simple and common everyday things such as holding a cup, grasping a TV remote, or retrieving a dropped coin from the floor. This actually causes me to constantly drop things. An item will literally slip from my grasp without me even realizing, since I cannot feel the item in the first place. Guys don’t think about how much time it takes to shower and dress for the day, they just do it. But guys with CMT think about it. Heck, guys with CMT have to schedule it, like an event. Scheduling the allotted extra time to accomplish simple tasks like brushing my teeth and combing my hair is a daily burden. Most guys do not even give these simple tasks a second thought.

Here is an opportunity to experience CMT hands for yourself. I encourage you to try this exercise and time it. Take off your shirt and jeans. Tape the fingers of both your hands together. Tape all of them, even taping your thumb to the other four fingers. No opposable thumbs in this exercise. If you really want to experience what I feel to the fullest, wrap your hands in saran wrap first to dull the sensation, or put on a pair of gloves, then tape. Start the timer. Grab your jeans and shirt. Hey, if I can do it, you can do it. Now, let me know when you’ve wiggled into those jeans and that shirt using your taped up hands. No worries. Plenty of time, here. No cheating now. Wait, you can’t leave the house like that – your fly open and shirt unbuttoned? You are not dressed yet! But — are you frustrated yet? Keep timing! You will eventually get your fly zipped and your shirt buttoned, your socks on and your shoes on and tied. Don’t want to be late for work… How you feeling? A little winded? Exhausted? Almost aerobic?

My hands are not taped together, you’ve pointed out. Agreed. But there is absolutely no sensation in my hands. Moreover, my thumbs fold into my palms, no longer opposable. Might as well be taped up just like I suggested you try, obviously making a simple task like getting dressed, something accomplished daily by a 4 year old, completing daunting to people with CMT.

Before you untape your hands, try picking up a small object like a coin or a screw you’ve dropped on the nice, flat floor, not carpet. I wonder if my wife knows how much money has been swept under the sofa in frustration. There must be a goldmine under there! Ok, now you can untape your hands. Just a day in the life…

Fighting a losing battle

Dad and I

My prior blog briefly covered my first 30 years living with CMT.  Today I am sharing the next few years, a great life spent dodging countless CMT curve balls.  The mental anguish competes with the detrimental physical aspects of this terrible disease.  I spent lots of down time, patiently waiting to heal injuries, wondering — the what if’s, the “I wish I would have done that’s.”  This pesky, negative thinking occupied my brain much of the time.  My mind would wander off during conversations with people intently sharing their stories.  I learned to disguise my mental AWOL forcing frozen smiles, nodding, and adding an occasional “yes,” or “really?” at appropriate times to prove I was actually listening.  (My apologies to these people of course!)  Practice makes perfect — I was getting rather proficient at masking pain and hurt and pretending to be involved.  Unfortunately, mental fatigue began to take it’s toll.

Shortly after leaving my job at Walmart, I started visiting doctors searching for options to improve my health.  I was given a prescription for custom made orthopedic shoes. My foot deformity was extensive with very high arches, curled hammer toes and bone growth on the side of my foot, painful stuff to say the least.  The shoes were ready made in a shop but had to be customized to my feet.  With some tweaking by the podiatrist, I was ready to go.  Surprisingly, these shoes felt really comfortable.  But, as a fashion statement?  Well, maybe for Frankenstein.  Clompy, scary shoes — black leather bricks, heavy as anchor weights, exhausted most of my energy, as if I had any to spare.  Thank God I had already graduated high school.  I can’t imagine attending high school in these ugly shoes and dealing with the social trauma, too.  I already had quite a bit on my plate.

A year passed.  Now, the shoes were so worn out they were literally falling apart. Medicare would not cover the cost of replacing them and I could not fork out another $1,500.00 for custom made, orthopedic shoes. If I were diabetic, Medicare would have covered the expense.  To me this seemed so unfair – my disability did not matter.  This decision by Medicare hurt me very much.  So, desperately needing another pair of shoes, I was forced to wait.  Purchasing another pair at this time was impossible.  Back to $20.00 sneakers, constant, intense pain, and faking a positive attitude to the world, pretending to be normal, pretending to be happy.   My foot deformities – abnormally high arches, curled, hammer toes – coupled with poorly fitting shoes caused ulcers and callus buildup on my feet.  Foot drop also contributed to these issues.  Foot drop is caused by loss of nerves and subsequent muscle deterioration in my ankles and feet.  With foot drop, when walking, I have no control over the strike pattern of my foot.  Think of a floppy, broken hinge.  Gravity brought my feet to the ground, and my feet landed however they landed, without any control whatsoever.  The ulcers on my feet never healed since they were constantly being irritated.  Doctor’s orders over and over, like a broken record: Off your feet, take it easy until the sores heal, you will be OK.  So much idle down time to think.  I was a young man.  I didn’t want to spend my life sitting in a chair with my feet up like an old man, contemplating “if only” and “what if.”

Charcot Marie Tooth is a peripheral neuropathy disease affecting the nerves outside the brain and spinal cord. CMT related neuropathy begins in the extremities like toes, feet, fingers and hands, in varying degrees of severity, from one patient to the next. I always wondered why my feet were totally numb from my toes to my ankles.  Now, I know.  As soon as a sore would heal, another would appear.  I could not feel the sores, even when they became infected. The only thing I could do is use a mirror to check the status.  This caused me such mental torment.  I hoped for healing only to discover new sores daily.  It is beyond words attempting to share how really scary and out of hand this condition became and I just wished so much for it to go away.  Of course, it never did.  A local podiatrist would see me on a weekly basis and trim my ugly feet, wrap them in bandages, and send me home.  My regularly prescribed, cocktail of antibiotics would temporarily help, but this was just buying me time.  No doctor ever addressed the actual root cause of the problem, my deformed feet, or the CMT.  Instead, they treated the symptoms, over and over again.

I’m not about to tell you some days were better than others.  That would be lying.  I often wonder what others feel like when living a life forced to focus on an uncontrolled and relentless medical condition.  Think this: driving a car down a winding hill with no steering.  Even at the wheel, you are forced to be the passenger.  No control.  I had no control over my health or planning my own daily life, even after seeking help countless times and following doctors’ orders exactly.  My dad and I shared a lousy disease.  But I felt completely isolated and extremely pissed off.  I was physically exhausted and becoming more and more mentally exhausted from the frustration and lack of control living with this nightmare disease.  Pretending to be happy, always wearing the pasted, fake smile, eventually took too much effort.  Pretending simply became too hard.