Tuesday, June 18, 2013

Why Are You Limping

Countless times people can be told that I have RSD/CRPS. The symptoms explained in detail. Burning pain. Muscle weakness and wasting. Cramping and atrophy, stiff rigid limbs. The feeling of broken bones in the affected limbs. Swelling. Redness. Thin skin. Brittle nails.

Some of these symptoms come on with no warning. Like the feeling of a broken ankle. Which means I'll limp because the pain is bone deep and horrific.

And the very people who claim to be praying for me are the same ones who ask why I'm limping. Go figure.

So if you don't mind me asking.....why are you limping?

K.I. Real

Sunday, June 16, 2013

When No One Knows My Pain

You say you know me
      But you don't know my pain
Like standing in a storm
     But you're not wet from rain
You say you're getting wet too
     From the water rising high
But you're safe inside your comfort
     So we know that's just a lie

No one ever weeps
Though my tears fall down like rain
It's a lonely life to live
When no one knows my pain

Don't tell me that you understand
      Your pity does't last
My world is always crumbling
     As I mourn things of the past
Like walking hand in hand
     With my lover on the beach
The sunset strolls together
     Are so far out of reach

No one ever weeps
Though my tears fall down like rain
It's a lonely life to live
When no one knows my pain
It's a lonely life to live
When no one knows my pain  

K.I. Real

Friday, June 14, 2013

Mourning Mode

Someone.....somewhere.....once said.....the eyes are the window to the soul.

I've been told many times that I have a beautiful smile. I've seen pictures. I know that I have a big smile. And that my smile is reflected in my eyes. They shine as brightly as my smile.

However, recent pictures look much different from those of the past. Pain has stolen that twinkle. Sadness has dimmed my once bright smile. That big smile is smaller and sometimes fake.

Please don't misunderstand, I love my life. But I grieve for things that I've lost. I'm disheartened by family that seem to care little about my pain or struggles. I miss friends who have given up on me because I'm no longer available to give, or do, or help. It hurts to see people go on with their life with little or no thought about me, a person they claim to love and care about.

I've just been in mourning mode lately. I'll be glad when I snap out of it.

K.I. Real

Monday, June 10, 2013

The Lemonade Stand I Call Life

I was raised with the mentality that if you wanted to succeed in life....if you wanted to live the "American Dream" you had to work hard. That if you worked hard you would be rewarded. I was taught to play by the book. Obey the rules and be a good person. Do unto others, etc. etc.

I started work when I was thirteen. I went to school. I went to church. I went to work. I did my chores. I guess people would have said I was a good girl. I was never suspended from school or even got a paddling. I didn't smoke. I've never been drunk. Never arrested or in trouble with the law. Heck, I've never even had a speeding ticket.

I went to work full-time right out of high school. Married and worked until I had children. Raised two boys. Went back to work. Volunteered at their school, was room mom and team mom for sports teams. I volunteered at church and traveled as a youth chaperon and assisted the youth minister. Taught Sunday school, helped with the youth ministry, worked in AWANA and sang in the choir. I coordinated Fall Festivals, worked in the nursery, VBS and bereavement ministry. All while my husband worked and traveled with a southern gospel quartet.

We were busy parents but we worked hard and treated people right. We played by the rules. We gave to our church, we helped friends in need, we were good to our family. We expected life to be fair.

Well, guess what. Life's not fair. Sometimes we don't get what we give. But as the saying goes.....if life gives you lemons make lemonade.

I could open up a lemonade stand.

K.I. Real

Saturday, June 8, 2013

Wake Up And Feel The Lightning

At 8am I was sitting on the side bed with a dizzy headache. We have a lot to do today.... I kept thinking that over and over. My back was hurting and my feet were burning. A sensitive burn. A kind of burn that feels hot and cold at the same time.

Like coming in from playing in the snow. Your hands feel like ice. So cold and frozen. You run hot water over your skin and rather than feeling warmth coarse through your veins you feel an icy burn. Stinging, prickly, stabbing pain.

Have you ever been shocked just by touching a door knob? Or by shaking hands with some one? Felt a jolt from a light socket or while hanging the Christmas tree lights? 

When one of these unexpected jolts hit, you might yelp from a combination of surprise and pain. For me it's more pain than surprise. Because I know it's going to happen, I just don't know where I'll be or what I'll be doing. But I know the shocks will be so intense I will see the veins pulsating. Imagine watching a vein throb so intensely that it bruises before your eyes. 

Now imagine waking up every day knowing this was going to happen through out the day. Anytime. Anywhere. And there's nothing you can do to stop it. 

K.I. Real

Wednesday, June 5, 2013

Life Is Not A Bowl Of Cherries

In my early twenties, if someone had told me that I would eventually have multiple health issues and be disabled I would have laughed in their face.

When I was thirteen I started working at a small service station about a mile and a half from my house. When I wasn't working I spent a great deal of time involved in church activities, going to school and doing chores at home. I've always worked hard and was raised to have an excellent work ethic.

At the age of thirteen I was diagnosed with high blood pressure. Other than that, and constantly battling my weight, I was always a pretty healthy person. And then I hit my thirties.

My blood pressure became harder to manage. I began having multiple health issues. None serious, just annoying and sometimes hindering my active lifestyle. Headaches, extreme forgetfulness and brain fog, dizziness, terrible neck and shoulder pain, back pain, fatigue and muscle cramping and stiffness. Multiple tests were negative. Blood work showed no abnormal readings. My doctor promised to keep looking. He put his hand on my neck, slightly squeezed (as a supportive gesture) and saw my face scrunch up from his touch. He realized I had Fibromyalgia. I had never heard the word. He told me to study up and return for a discussion and plan for treatment.
From there I began having other issues. The headaches became nauseating, the dizziness led to fainting spells and every pain became magnified. It seemed everything in my body was either hurting or not working.
By the age of forty I had had multiple surgeries. Surgery to remove bunions from both feet. One failed so there was a repeat surgery on my right foot. Female issues led to therm-ablation, having my tubes tied and then a hysterectomy. Once on bed rest for my blood pressure I got sick with a respiratory issue. It being the weekend I decided to take some of my mom's antibiotics, Levaquin. It was a life changing decision. I had a reaction call Stevens Johnsons Syndrome. First and second degree burns all over my body. This terrible reaction to half a pill. My doc said he would have eventually prescribed that antibiotic to me and if I had taken a full pill it most likely would have killed me. Health issues continued to plague me. I began having terrible intestinal problems. I've had my gall bladder and appendix removed. And later a diagnoses of IBS and Atrophic Gastritis. All the while pain and numbness in my hands and arms were interfering with my job and daily activities. Carpal tunnel surgery on both hands. Multiple hospitalizations for respiratory issues and pneumonia. Knee surgery to repair a torn meniscus from a fall in my yard that also fractured my ankle. And during all of this, unknowingly, an autoimmune disease was attacking my body. And unbeknown to me, at this point my spinal canal is narrowing and degenerating. My discs are also degenerating. The increased pain and numbness I believed was due to the Fibromyalgia. I would discover later that it wasn't. I had also developed severe pain in my upper jaw, believing it to be tooth pain. Three root canals, a five tooth bridge and several thousand dollars later I saw an ENT that diagnosed the problem as Trigeminal Neuralgia (a.k.a. the suicide disease). I left his office in tears wondering "what next?" ....Still having the neck and back pain I finally have an MRI which revealed three lumbar herniated discs and four cervical           herniated discs. One critical. I had cervical fusion surgery to repair the critical issue. One week post-op I was hospitalized for pneumonia and for a terrible allergic reaction that I had to the steri-strips. Not only did I have 4"x4" square burn on my neck I also had a goiter from the underlying inflammation. The only good thing about that allergic reaction and subsequent hospitalization was that the floor physician questioned my frequent bouts of pneumonia. He tested me for a deficiency in immunoglobulin G, antibodies in the blood that fight infection. I was positive for the deficiency and immediately began monthly IV blood treatments. Although my infections decreased my other symptoms were getting worse. As soon as I was healed from the neck surgery I had lumbar lamenectomy to repair the discs in my lower back. Between these surgeries it seemed every health issue I ever had and every symptom associated began to magnify by a hundred. Body numbness, dizziness, swelling, burning and redness in my feet. Extreme sensitivity to hot and cold temperature. Very little physical activity led to profuse sweating. Days and nights were filled with nausea and extreme exhaustion. Unexplained hives and rashes. Muscle cramping, twitching and weakness.
After a weekend of swollen feet and red burning skin I head off to see my general practitioner, photos in hand, to find out what's up. He takes one look at the photos, slumps his shoulders, leaves the room and returns with a neurologist. The news was not good. Diagnoses Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome. I've since seen a specialist who confirmed the diagnoses. Dysautonomia.... POTS..... RSD/CRPS. And he said that the RSD would likely spread from my feet up to my hips and lower back. He was right. It's spreading.
So here I am, forty-five, can't work and can't do the activities I once loved. I spend most of my time at home on the couch or pattering around the house. I rarely see friends or family.

Life is not what I expected it to be. And it certainly isn't a bowl of cherries.

K.I. Real

Tuesday, June 4, 2013

Lucy....I'm Home

Almost daily my spouse comes in from work and asks me about my day. Clueless as to why I didn't spend half my day outside enjoying the beautiful sunshine.

Well, since I'm keeping it real, let me give you a couple (dozen) reasons.

Once I get out of bed, go for a potty break, take my meds, take the dog out for a pit stop, grab a quick breakfast and finally hit the sofa, I'm not only exhausted, I'm sweating profusely and breathing shallow. So I eat, then rest. After I catch my breath it's time for round two. Trek back to the kitchen with my breakfast dishes, give the dog her morning treat and head to the bedroom to make the bed. Once the bed has been made I grab a load of laundry and make my way back to the other end of the house. Once again, time to cool down and rest. Round three....time for another potty break (the dog and me). Change out the laundry and then off to shower. Room temp water. Hot increases my body temp and cold makes my muscles and joints stiffen and ache. Out of the shower and sweating like I've ran a triathlon. I dress and make my way back to my trusty spot on the sofa. Time to cool down and rest. At this point I'm squeaky clean, yet sweaty and exhausted. Before I know it round four has quickly approached. My stomach tells me it's lunchtime and the dog has reminded me that her bladder is smaller than mine. Our quick trip around the house has caused my head to spin, my feet to burn and my skin to pour sweat. Back in the house I grab a quick bite to eat and take another rest. Next up, round five, check the laundry. Change out loads, fold and put away what I can. Clear away my lunch mess and rest a bit more.

Sounds monotonous, huh. It is. So why don't I spend my days soaking up the rays. Basking in the sunshine. As if the above routine isn't reason enough, honestly, I can't stand to spend time in my neglected yard. The yard I used to take so much pride in. I would brave the heat, relax in the pool and get completely lost in the beautiful place I called home. Now there's nothing pulling me outside.

So when my spouse walks in the door every afternoon I feel a bit like Lucy Ricardo. "Ricky" expecting to sit at the table with a five course meal, hear about my productive day.....all while I'm dressed in my Sunday's best.

Some afternoon soon I fully expect to hear him yell....."Lucy, I'm home."

K.I. Real

Monday, June 3, 2013

Do I Have To Write It Down For You

Somedays i feel like I need to take a Sharpie marker and write LOOKS CAN BE DECEIVING across my forehead. Okay, so I wake up, don't complain, get dressed and try to look presentable (especially if I'm going out). So I look good. That's what people keep telling me. "Well hey. You look good. You must be feeling better."

One time I just want to say, "No, you idiot, I still feel like crap."

I still can't sleep well. I can't sit, stand or lay down for any length of time without feeling terrible pain. I can't stand without getting dizzy. Sit without my legs and hips going to sleep. Walk more than a few feet without causing my legs and feet to burn like fire. I can't stand to feel my shoes on my feet or my bed sheets touch my toes. Some days my senses are not working correctly. They are in high over drive. I can't handle loud noises, strong smells or bright lights. My taste buds are either bland or burning. Often my head feels like it's about to explode. My skin is itching from the hives brought on from an out of control immune system. Taking a shower brings on more pain from feeling the water roll off my skin. Any movement at all causes dizziness and extreme bouts of sweating because my body does not know how to regulate temperature or blood pressure.

OK. So my friends know that I have a multitude of health issues. I've explained all of this before. But if I look good, well by golly I must feel good. That's TOTALLY NOT TRUE.........DO I HAVE TO WRITE IT DOWN FOR YOU.

K.I. Real

Sunday, June 2, 2013

Someone Else's Victory

Per www.wikipedia.com ....Envy can be defined as a resentful emotion which "occurs when a person lacks another's (perceived) superior quality, achievement or possession and wishes that the other lacked it."

Bertrand Russell said that envy was one of the most potent causes of unhappiness. Not only is the envious person rendered unhappy by his envy, but they also wish to inflict misfortune on others. Although envy is generally seen as something negative, Russell also believed that envy was a driving force behind the movement towards democracy and must be endured to achieve a more just social system. However, psychologists have recently suggested that there may be two types of envy: malicious envy and benign envy - benign envy being proposed as a type of positive motivational force.

At times we all have to feel some sort of envy. Rather malicious or benign, envy is a natural feeling. Especially when your entire life you have followed the rules, done what is right, worked hard and been a good person, yet things aren't going your way. Or what you believe is "your way."

My idea of what I deserved out of life was health and happiness and hard work that led to financial security and a descent life. A family I loved. A job I enjoyed. A home that I looked forward to going to every afternoon when the work day was finished. Vacation days spent relaxing on the beach with my hunny at my side, a book in my hands and my toes in the sand.

Instead I spend my nights in restless sleep and my days fighting pain and nausea. Forced to give up a job I loved along with health insurance and a salary that offered our family financial security. No worries of paying the mortgage or having money for new tires or auto repairs. Trips at the spur of the moment were common place. Yearly tropical vacations were well planned, happy and care free times.

It's difficult to not have feelings of envy when all of your life you have worked hard and followed the rules. Yet you have lost your financial security, your health has failed you and the activities you once loved you are no longer capable of doing.

Social media can be a blessing and a curse. While it keeps you connected to the outside world sometimes it can be depressing looking at pictures of happy families playing on the beach, sitting poolside sipping a fruity drink or bundled up about to hit the slopes.

I can honestly say that I believe my envious feelings are not malicious. I don't wish for others to not have healthy happy lives. I just believe if I expect that for myself that I'm not being unreasonable.

Just remember....someone else's victory is not your defeat.

K.I. Real

Saturday, June 1, 2013

Up And At 'Em

Nights filled with pain. Restless sleep. Doze off. Wake up. Toss. Turn. Move to get comfortable. Is that even possible? Not since I can remember.

People take for granted the simple things in life. Like a good night's sleep. Buying shoes that are stylish. Going to the mall. Planning lunch dates. Sitting through a movie.

Chores may have once been a nuisance. Mowing the grass. Shoveling snow. Washing the car. Now become things you long to do. Wishing you had not only the energy to do chores but an able body.

Lying in the bed. Mind racing from what needs to be done to what you know you can't do. No one realizes that you not only think about days past and what things were like. But you grieve for those days. What you know will never be.

So let's get up. Take our meds. Try to live. Doing little. Saying little. Feeling very small.

Up and at 'em.

K.I. Real