Tired

Sometimes I feel pain and smile. I smile because its what people expect. It's what they want. When they ask, "How are you today", what they want to hear is "I'm fine", "I'm doing great". They don't want the truth. They don't want to feel bad. They don't want to feel guilty because they feel good and you feel bad.

I'm tired of pity. I'm tired of the sad looks. I'm tired of feeling bad. Tired of hurting. Tired of pain. Tired of rarely hearing from friends. Tired of people not understanding. Tired of hearing people refer to me as their friend yet they show no sign of friendship.

I'm just tired of it all.

Blessed to have a great husband, great children, great mom.

Imagination Living

I'm totally wiped out. Functioning throughout the day, lately, has been an up hill battle. These days feel fruitless. Waking up exhausted. Going to bed sore. My body full of pains and aches. In the meantime I try to do what is absolutely necessary. Otherwise I veg out and pretend to be active, living vicariously through my television programs.

Chasing bad guys through dark alleys, solving "whodunit" crimes or singing on stage with my favorite star/judge. Spinning a wheel to win the showcase or solve the puzzle. Or I could be racking my brain for the top six answers to some crazy question asked to 100 men.

There are lots of things to do when you are home bound. You just need three things: A working television, cable and an active imagination.

:)

Dog Toys & The ENT

My favorite part of summer is swimming. Weightless movement and exercising with no worry of pulled muscles, profuse sweating or annoying sounding video instructors. Yes, swimming is fun, refreshing and the most fun exercising that it almost doesn't feel like exercising at all. But swimmer beware: Diving in the deep end can cause countless hours of painful earaches.

Having never had swimmers ear or a ruptured ear drum, and rarely an ear infection, I found myself in quite the conundrum. I dove into the deep end to retrieve a sinking dog toy. My ear drum popped, as it had before, and I thought nothing of it. Until the ear ache began. Then the swelling and drainage.

After ten days of ear drops, prescription antibiotics and pain I finally made my way to see the ENT. Diagnoses....all of the above. Yay!! Gouging, suction, washing, more suction and two ear-tampons later I'm headed out the door with one deaf ear, two prescriptions, two shots in my rear cheeks and an appointment card to return for more fun two days later. Yee-haw!

So, better safe than sorry. Ear plugs for future swims and the dog can retrieve her toys.

Happy summer and safe swimming.

If Tomorrow Never Comes

August 8, 2013, my brother Roger would have been 50 years old. It's difficult to understand how a seemingly healthy person can walk through the front door of a doctor's office and leave through the back door headed to the morgue. When Roger died last December of a pulmonary embolism we were all saddened and heart broken. As a wife I can't imagine living one day on earth with out my beloved husband. As a mother it seems unnatural to out live a child. As a child the death of a parent is a tragic loss when they mean so much to you. But we all have an appointment with death. Knowing that exact day would alter our life. Perhaps in a negative way. So what are we to do???? For me....live each day to the fullest. Forgive, love, smile, cherish, believe in a life ahead that will be a never ending time of peace and happiness. We miss Roger. His sudden death emphasized the need to take nothing for granted. 

Judge not what you can not see. Simply because a person looks healthy on the outside does not mean that all is well inside. 

Be compassionate. Find goodness. Love like there will be no tomorrow. You never know when you will draw your last breath. And personally, I want my last breath to be remembered as that of love and kindness. 

Innocence

Warmth washes over me

Like the sun kissing sand
The shore embraces waves
As a mother holds her child

Flowers bloom from rain

May is full of fragrance
Trees are filled with songbirds
Sweet songs fill the air

Lay on a bed of green
Watching the earth spin
Clouds float in the sky
White fluff on a canvas of blue

Light fades to black
Stars light the way
Darkness is quiet
Though the night is loud

Crickets play a symphony
Frogs sing bass
Children chase fireflies
Unaware of innocence

The Ferguson Birthday

How do you love and accept a person that someone else chose to be a part of your family? I can tell you how I did it.

As a mother we consider what choices our children will make. Their career? Their mate? Will they have children and how many? We wonder how these decisions will affect their life? After all, what we want is for our children to be healthy and happy.

My eldest son, Zayne, chose a family member for us. Her name is Irish and she was officially added to our family July 18, 2009. After their dating period and four years of marriage I can tell you that I love her more now than I ever have. I made a point to get to know her. We talked, shopped, swam together, had lunch, discussed books and movies and played lots of board games with our family. We made time for each other. And now we have a relationship that is beyond what I imagined possible.


Over time I saw a young woman much more mature than I had thought. She was responsible beyond her age. She was at first a bit shy and introverted but soon, after time spent with this very loud and boisterous family, she was forced to reveal her survival instincts. Zayne chose this wonderful family member. And I must say he did very well.

 Over time we discovered that Irish is a kind hearted woman with an overwhelming knowledge and love for the outdoors. She loves animals with a passion. She has a desire to excel in what she chooses to do. She cares for me like, I feel, a daughter cares for her mother. She fits our family so well (now that she has learned true sarcasm). She knows our routines (like doing dishes as soon as we have eaten). She offers her time (like driving me to doctor’s appointments). We both love Contemporary Christian music. :) She loves her friends and family, no matter what. She’s thrifty, unless she’s buying for those she loves. She's just wonderful. She's a rare person, beautiful on the inside and on the outside. A beautiful jewel. 

She’s exactly what I would have wanted if I had given birth to her on March 14, 1990. That is the birth date that she shares with her parents.

As for me, I send Irish a “Happy Birthday” gift every July 18^th because that’s the day she joined our family as our daughter. Happy "Ferguson" Birthday!! We love you sweetheart!!

The Dust Jacket

When you deal with chronic pain daily you have time to read (if that’s something you enjoy – which I do). Recently I read a mystery novel. The dust jacket is sleek and shiny black. The title is of gold letters that seem to pop right off the cover. It’s written by a well-known author and I have read almost all of his books. But honestly, I’m a bit disappointed in this book. This tells me that just because most of his books are good, the dust-jacket doesn't make it great. It's also a reminder that just because the outside of an item, or the facade of a person, appears radiant and beautiful, the inside can be a total mess.

Have you ever met a person whose “dust-jacket” appeared faded and tattered but later you discovered their content refreshed your body and encouraged your soul? That's happened to me. Soon I looked right through this person's outer appearance and saw nothing but humility and love.
Life teaches us so much and there are so many lessons to learn if only we will open our minds to comprehend. We should look with our heart rather than our eyes.

No matter if my hair shows gray, my weight is not ideal or my clothes are not the latest fashion, I am so thankful that those who love me look beyond my “dust-jacket.” and knows that I am worth their love. Let's all read a "book" today whose dust-jacket looks less than desirable. Perhaps we will be touched, inspired or encouraged by its content.

Dealing with chronic pain, I know that I want people to see what's inside. Not the familiar smile that's forced. Or the pretty dress and painted face. We should give what we want to get. 

XO

Carmen

Dis-auto-no-me-what????.....Dysautonomia

The name sounds kind of funny

Dis-auto-no-me-what?

Most folks have no idea

When I tell them what I've got

The autonomic system

Controls the fight or flight

My brain and nerves misfire

They just do not work right

Simple things should be controled

Blood pressure, breathing, heart rate

Oftentimes I sweat profusely

On medications I gain weight

My stomach's always hurting

Food allergies, nausea, bloating

Poor digestion, crazy taste buds

Little movement, excessive sweating

I rise up in the morning

Restless legs and more poor sleep

Dizziness, low pulse and weakness

I lay in bed and sometimes weep

The day brings on more struggles

Flushing, hives and tender skin

Heat intolerance and fainting

Clamminess and constant pain

Going out to church or work

Seems like an easy task

Anxiety and feeling wired

Chest pains and short of breath

Sensitivity to light and noise

Skin that's tingling, numb and aches

Disabling fatigue, nerve pain

Brain fog, severe headaches

I have so many problems

Health issues times fifteen

You say you had no clue

Just try listening to me

To My Husband & Others

I love him so much

He's always here for me

Without his loving support

I wonder where I'd be

When I wake up groggy

Because of countless meds

He'll make my favorite coffee

That he'll bring to me in bed

Spur of the moment trips

Are something of the past

He's sometimes disappointed

But that never really lasts

Headaches, nausea, cramping

The feeling of broken bones

Ringing ears and itchy eyes

A few reasons I stay home

My back is always hurting

Not just a little bit

My feet and legs are burning

A blaze that nerves have lit

The dizzy spells and sweating

Sore muscles, hurting skin

I can disappear for months

Not one call from my "friends"

They can't see my torment

They judge me needlessly

I just wish they understood

What's it like to live with me

He watches me so closely

I'm so proud to be his wife

This journey would be different

With out him in my life

You Used To Be My Friend

What constitutes a friend

Someone who's always there??

They say call anytime

Because they really care

We used to do a exciting things

Past times were always fun

Then my health began declining

It seems our friendship's done

No matter what you say
Your actions do speak loud
This betrayal hurts my heart
Is this what makes you proud

You don't have time to visit
You never even call
How can you claim to be my friend
You've got a lot of gall

To turn your back on something good
Because you don't have time
You may be someone else's friend
But let me tell you you're not mine

Play By The Rules To Lose

Wake up in the morning

Another restless night

I shuffle to the kitchen

Things just don't seem right

I grab a cup of coffee
And think about my day
Places to go and things to do
But there's no possible way

I used to go to work
Happy to be there
Now I stay at home all day
Does anyone really care

My passions have died
I didn't want them to
But my body isn't able
What else could I do

People say to keep my chin up
Sometimes that just gets old
This comes from those who have no clue
No matter what their told

It may seem mean or spiteful
Everyone thinks they know best
They live a fairly normal life
Separated from the rest

Those of us whose life has changed
Through nothing that we've done
Just because we've played by the rules
That doesn't mean we've won

What You Give Is What You Get......Really??

Living positive can be a lie.

Wake me from this nightmare.

I feel like I'm dying silently.

Does anybody really care.

You can't see the truth.

The reality of my pain.

In your world the sun shines.

Every day I live in rain.

What you see is what you get.

That's really such a lie.

You see my smile and hear me laugh.

Inside I want to die.

So take a look at how you live.

The fun things that you do.

You complain about your job.

You're lucky to be you.

The things I want to do are simple.

Shopping, gardening, church and parks.

Things that used to brighten my day.

Now I stay at home and feel alone in the dark.

If you have an able body.

Don't complain about your chores.

So many people want good health.

And desire so much more.

So don't judge a book by it's cover.

You will likely be deceived.

What you give is what you get.

Is that what I've received?

Sick And Tired Of Being Sick And Tired

You don't understand. You see me out and about. You think I must feel well. You see me parked in a handicap space. You roll your eyes. You scrunch up your face in disgust. You're tempted to speak your mind. Tempted to tell me that I'm scum for using someone's handicap placard.

You get up every morning. Anxious to start your day. No thoughts of medication. No consideration to stabilizing equilibrium. No worry that your body will not regulate your blood pressure or heart rate. Taking a shower is refreshing rather than a chore that wears you out and causes profuse sweating.

I'm not only sick and tired of being sick and tired.....I'm really sick and tired of ignorant judgmental people who have no clue what my life is like and no appreciation for their good health and wonderful life.

K.I. Real

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

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
   

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

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

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

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

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