Category Archives: About Me

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Invisible Sufferers – Unseen Disabilities

I have been struggling with a dilemma for some time – get a handicap pass or not.  I am so worried about how I will be perceived when I get out of my car – not the handicapped part – but the part where I don’t look handicapped.  Often when I begin my shopping trips, I feel relatively fine.  When I walk into the grocery store, I usually don’t need my cane and so I leave it in my car.  However by the time I am finished, I can be very fatigued and the pain and stiffness can affect my walking.  Unless it has been a terribly stressful day out, I can still manage without my cane, just more slowly.

I am fortunate to have a husband who supports me and my restricted lifestyle, both emotionally and financially.  I also have two amazing kids, who seldom let me go out-and-about without one of them as co-pilot.  But my husband is military and sometimes must leave home, and my kids are nearing college age.  The reality I won’t always have their help and buffer is settling in and forcing me to deal with my fibromyalgia in a new way.

Many times when I have been overextending myself with errands, I resort to using the handicapped restroom facilities.  I feel self-conscious about doing so because I don’t look handicapped.  I worry about the person who might challenge me, setting off an anxiety attack.  Anxiety is a major trigger for my fibromyalgia pain which in turn triggers crippling fatigue. While I have learned to keep the anxiety at bay under normal circumstances, confrontations are very difficult for me and will usually put an end to my plans for the day.

I know I am not alone in my worry over perception and subsequent confrontations.  Sufferers of many types of disabilities, suffer invisibly. Sadly, it seems the stronger you are and the more you challenge yourself to live a normal life, the more you are disbelieved.  “You look normal,” becomes a burden not a relief to hear, because it always seems tainted with disbelief and accusation.

Now I am planning a trip to DC with my family to see all the museums.  I know I will need to rent a wheelchair if I am going to make it through the trip.  Luckily wheelchairs are available for rent at most public locations now.  It won’t be the first time I will resort to such measures; I have utilized the wheelchairs available at our military shopping facility.  However, on the base where people are more aware of the unseen injuries of war, I feel less self-conscious.

Over the years, I have learned that talking about my worries and my experiences helps me to both feel better and helps others feel informed.  So today I have chosen to cry, and write, and hope that by posting this I will feel more confident in my decision to get a handicap pass for my car.  And maybe if a concerned citizen decides to challenge me or another invisible sufferer in a parking lot someday, one of you readers will be there to come to our defense.

 

* The following is a painfully accurate account of another Invisible Sufferer  Privilege and Prejudice: Disabled Parking with an Invisible Illness

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Do You Like What Your School is Doing?

Eleven years ago, I felt the strong impression I needed to homeschool my two children.  While the concept of homeschooling was not a new one for me, it was one I was sure I would not pursue for many valid reasons.  However, I am not one to lightly disregard a deep, penetrating impression and so I began to reevaluate my conclusions.

Unlike many of the people deciding to homeschool at the time, I did not make the decision based on religious concerns, or concerns about the many “ills” a child might face in public school.  No, I simply took a closer look at my pre-school enrolled son and realized that he was already getting frustratingly bored with the limitations of group learning.

Never have I doubted the rightness of my decision, although it has been a tough road to travel.  The blessings have been boundless and the joy amidst the struggle, immense.

A sense of relief has now been added to my list of homeschooling emotions.  For while, I did not make my decision based on the policies of public schools, I find myself immensely relieved that I homeschool after reading a few news articles concerning the public school world.

I decided to write this post and put this list together after my daughter came and asked me to check on a story about school lunches she heard on the radio this morning. I also Google searched for stories about absentee punishments, but in this case the stories that popped up were terribly sad and from other countries.  On that topic, I do know of one Colorado school which has a policy in place whereby the student’s grade will be demoted each time the student misses class more than the allowed absent days.  Furthermore, excused absences which are only accepted when signed by a doctor, also count against the total.

When did we, as parents, sign over our rights and accountability for our children to the school?

School Lunch Police

Child Truant – Parent Jailed

Do children have the same legal rights as adults or are their rights lessened just as their punishments for crimes are?

Freedom of Speech Cases

Suspended for Banner 

Determining Speech Boundaries

Does the government owe our youth an education if the taxpayers are paying for it?

Suspended Child Sues School

Peanut Allergy Precautions 

Sports or No Sports

 

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Moments in Time: Monumental Lessons

The first moment I would like to share came when I was nine years old.  My mother, who was running marathons at the time, had a grave concern that I was going to grow up to be overweight, and thus decided to entice me to get fit with a bribe  She offered to take me to New York to participate in an all-female 10K, but only if I could run the distance without stopping beforehand.  The jog around Central Park was much more pleasant than the training runs, due mostly to the fact that my mom left me with some slower runners who were prone to take walking breaks. This moment in time taught me I could do anything if I tried hard enough, and that breaks make tasks much more pleasant to accomplish.

Jump ahead a handful of years to the summer when I was fourteen.  While my grandfather had dairy cows, a couple of his brothers had beef cattle and Quarter Horses.  I loved to ride, and would ride as often as I could convince someone to get me to a horse.  I had ridden with my mom and dad, with my cousins and brothers, even with a few uncles, but never with my grandfather, at least not since I was an infant in his arms.  That summer a unique thing happened, my grandfather took to the saddle one more time. With his older brother, and three grown nephews, he decided to revisit the days when he still used a horse to get the work done.  The men all had saddles, bridles and young mounts.  There was only one horse to be left behind, a thirty year old cattle pony which my mother had trained decades before.  My mom, neglecting to ask me or the men for permission, found an old broken bridle and without much warning, hoisted me up on the beautiful, wise, saddle-less mare. I was instructed to let the horse do the work, hold on and try my best not embarrass my mom.  Then off I went, chasing cows and jumping ditches right alongside my grandfather.  I had never before been as humbled or proud as I was on that day; the day I learned to hold on, stay quiet and cherish the moment.  Although my grandfather lived many more decades that was the last time he rode a horse, and the first time I really knew he was proud of me.

My next moment unfolded during the very first days of my sophomore year in college.  Over the summer, I had worked at a camp in Alabama teaching girls how to ride.  I had earned very little money at the camp, in truth only enough to cover the cost of unlimited riding lessons at college which I so desperately wanted, but which wasn’t covered by my student loans and grants.  It was a hard year to work at a summer camp, record rains kept us fighting mud and humidity.  Plus I had suffered a broken toe just a week into camp, causing me to limp through the remainder of the summer.   To my horror, after a week back at school and back in an English, rather than a Western saddle, my knee was painfully swollen and a trip to the doctor was in order.  As it turned out, all the limping from the broken toe had aggravated an old injury to the point where surgery was advised.  However, surgery was not an option for me.  Besides the fact that knee surgery wasn’t as nice and tidy as it is now; I didn’t have the insurance or funds to cover it.  Riding was therefore replaced by physical therapy. Therapy taught me that I could overcome the obstacle of pain and find a replacement for my lost love of riding. After months of working with the school physical therapist, I became healthy enough to train for the New York Marathon.

So with a marathon completed, I moved on to my next challenge: US Marine Corps Officer Candidate School.  In a mere seven weeks of the ten week program, I was left with tendonitis in all my toes, a torn muscle in my shoulder, a chipped tooth and various other minor injuries; all of which had not stopped my desire to be a Marine.  But then flu-like symptoms, unexplained leg swelling and dizziness set in and I was done. I decided that leaving on my own terms rather than in a wheel chair wasn’t quitting, it was just recognizing that my body wasn’t suited for what my brain wanted to do.   That summer I learned how to laugh instead of cry when I was in pain, even when the pain was from the heartache of leaving something behind.  

There are so many more moments in time I could share, but I will finish with one simple moment that occurred today when I was able to exercise for fifteen minutes on my elliptical machine.  Four years ago, I was advised by my doctor to take things slowly if I wanted to manage my fibromyalgia. When I asked what she meant, she replied, “Five minutes at a time.”  I wasn’t even sure how a person exercised for only five minutes at a time, but I was determined to learn.  I made a goal: have more energy when I turn fifty than I did when I turned forty.  I have had to overcome a lot of frustration. I have had to find a place to start and then I had to start again and again.  I have had to get creative and humble in my approach.   First I bought a cane so I would no longer feel so helpless when the fatigue hit.  Second, I bought a spinning wheel, for while I could not exercise without fatigue, and a strange feeling of guilt; I could spin yarn for hours and feel productive while doing it.  Finally, I gave myself permission to find strength in my weaknesses and opportunities in my limitations.

In our youth, time seemed endless, yet we rushed.  In our maturity, time seems brief, and we savor the moments we have left.

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Entitlement is a Symptom

I am a mother of two teenagers.  My boy turns sixteen in less than a month and my girl is in the first half of her fourteenth year. This fact does not make me an expert, however it does qualify me as a mother of our current generation of teens.

While my teens disagree with non-family adults at times, they are quick to apologize if they should act in a rude manner.  What I mean by this is that they speak their minds, defend their beliefs and apologize later even if they were in the right. They are good kids, they show respect for me and my husband.  They argue with us, as I believe they should because each argument leads to a lesson taught and learned.  They have said they are sorry for their attitudes more times than I can count and so have I (just not as often).  They have learned to respect people who deserve respect and have tolerance for those who do not.

I have the testimonials of others to confirm what I know from experience – I have good kids.  However, my kids didn’t get this way by chance and I didn’t win some good child lottery.  I worked diligently every day.  I went to bed praying every night to have better skills to teach my kids with, and forgiveness for my own shortcomings as well as theirs.  Too many days I yelled, too many times I became distracted, too often I waited longer than I should to give hugs and kisses.    I didn’t read to them enough, I didn’t play with them enough, but I did listen, observe and act.  I was in their lives, their faces and their business.  I still am.  I sacrifice for them. I give them all the tools they could possibly need to succeed. I drive them crazy with lectures, discussions and evaluations.  I am their mom, their confidant, their counselor and maybe just a tiny bit their friend.

It has not been, nor is it my goal to be their friend, but somehow, they like me.  Go figure, they like the grumpy, annoying, and nearly always right teacher, their mom.

So how have I managed this miracle?  Am I a Tiger Mom, or a French Mom or a Soccer Mom?  I am none of these things.  My success comes from spending endless hours talking to my kids, analyzing what they need, and acting.  In essence I parent them.

In 2004, Bill Cosby gave a speech in which he said, “We are not parenting.”  He also says that all the children “[know] is ‘gimme, gimme, gimme.’ These people [the parents] want to buy the friendship of a child….and the child couldn’t care less.”  He was talking to a very specific audience, an audience bigger than the one in the lecture hall that day.  His comments, which I advise all to read or watch, were directed to the lower and middle class black community of the United States, and he started a firestorm of fury.

However, I would like to direct his words to all of the middle and upper class of this nation, maybe even to the world.  I hear so much about the problem of youth entitlement, and how this is a “give me” generation, but where are their parents and grandparents in this debate?  Don’t get me wrong, I fully believe that the idiocy of the youth must be addressed, just as I have addressed my own children’s idiocy.  I have also addressed their grandparent’s idiocy of excess.  Excess money and toys do not make a child feel loved; only time and attention can generate that emotion.  Money and toys are easier to give and are a balm to the grandparent’s consciences when distance or busy lives keep them away from their posterity.  The child, old or young will not remember the money or toys when grandparents are gone, they will remember the games, stories and most of all the smiles and hugs that they shared with their “gramps and nanna”.

If it holds true that time and attention generate love, fondness and respect, then this recipe should work for parents as well as grandparents.

Often I have been told by working moms that they wish they could homeschool their kids as I do.  My answer has always been that they should use the hours of the evenings and weekends to work with their children.  Now, I don’t mean by heaping on more school subjects or doing endless housework (although working alongside your child is encouraged).  I mean that moms (and dads) should find a common interest or intrigue and pursue it together.  Yes, the zoo is fine or the museum, but unless you have a young biologist or artist in your home, try to find something else; something that you have to learn right alongside them, something new. It is amazing how much more open kids will be with you when the playing field has been evened.  Of course, word of warning, just like when teaching a child the game of chess you must help them win sometimes, while learning new skills and hobbies you should not outshine your child too much, let them compete with friends not parents for the blue ribbon.

When I hear adults complain about the “entitled youth”, I wonder about the parents and grandparents.  I wonder about the neighbor lady who is grandchildless, and the older gentleman whose children live far away.  How are they helping this generation?  I don’t think that the youth are the problem of today, I believe they are the byproduct of the problem.  Parents not parenting.  Grandparents spoiling rather than interacting.  Adults with kids grown, not volunteering in youth groups.  Society blaming the lost and not those who lost them.  Yes there will be some youth who will rebel or get lost regardless of the attention they recieve, but the effort should be made while there is still time left to make it.

I was brought up by a community of family and close neighbors.  When I had my children, I was not fortunate to have family nearby, so I found “family”.  I found aunts and uncles, grannies and grandpas, and even a few older cousins.  When someone moved away, I found a replacement.  I ensured that my children had a community of caring people in their lives.  I did this while I still worked full time and maintained it afterwards.  When my son faced a devastating internal struggle and his parent’s counsel did not help, we brought him to a loving “uncle” who spent time with him, listened to him and was always available, despite his own busy life as a father, husband and provider.  When my daughter struggled with self-doubt and low self-esteem, I found a bunch of “aunts” and “grandmas” who took her under their wing and nurtured her.

You will notice the word “I” was used quite often.  These are my kids and therefore I am accountable for them in their youth.

So what is the secret of my success, I spend time with my kids and I don’t do it alone – I don’t try to do it alone either.

(Just a note to the dads out their – all that I have stated, my husband agrees with, as parenting truly is a group effort.)

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The Natural Order of Life

Growing up on a farm, I learned the hard lesson that an individual life can often be shorter than the average lifespan predicts.

The natural order of life and death must be faced on a regular basis when living on a farm.  Our farm raised milk cows and so while I was fully aware of where our meat came from, I knew that the production of milk was the main goal.  This meant keeping the animals healthy and alive for a long time.

My role in the business was aiding my mother in nurturing the young calves. My mom was a great nurturer of animals and had a phenomenal survival rate with her charges.  At times she was even asked to guest speak for agricultural classes.  So while I was exposed to death on the farm, I only directly faced it with the very weak or very old animals.

This pattern changed drastically during the summer of my fifteenth year when an unusual virus took the life of fifty percent of the animals born that summer. While we did everything we could to keep the feverish newborns alive, in the end the strange virus was just too destructive.  By the end of that hot, grueling summer, death no longer seemed like something natural, but rather like a monster, unmerciful and unrelenting.  A new comprehension that the natural order of life and death could be traumatic settled in my consciousness.

That year was my last to work on the farm; the world around me changed and I changed with it. Over the years, the trauma of that summer faded and was replaced with a greater understanding that there are worse things in life than death.

Now I am older, a mother with my own teenagers who have experienced the death of many family members in their youth. While to my children, these family members were old, a few had died before reaching the “average” lifespan and by most standards, were still too young to leave this life behind.  I have tried to bring comfort to myself and teach my children that their grandmothers went to a better place; that their bodies had been worn out too soon, and that death brought an end to their suffering.

Just as the animals of my youth helped me face the realities of life and death and helped prepare me for the eventual death of family members, the animals of my children’s youth are teaching the same lessons.  Like the summer of my fifteenth year when an unusual heat brought an unusual virus, this year has presented odd shifts in the weather bringing untimely deaths.

Winter is supposed to be cold.  Animals grow extra hair to keep them warm during the winter, and unlike humans they can’t simply remove their coats when the temperature soars.  Sadly older animals, animals with weaker constitutions, and the very young often don’t survive when the temperatures soar one day and drop the next. Sometimes human intervention can help, but often times an animal, seemingly healthy one day, will lie down in the night and will rise no more at the dawn. This is life and life is not predictable. Knowing the average lifespan was met, is not a comfort.

Rest in Peace Bean – you taught us much about angora rabbits, made us laugh at your antics, and left a healthy posterity to carry on in your absence.  9 Feb 2012

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Answering the Call – “Mom …?”

I always knew that I would love homeschooling my kids during their teens.

When they were little, they needed seatwork and lots of encouragement.  I am not sure that I did so well in either of those areas.  Yes there was seatwork and yes there was encouragement, but did it all happen at the right time or get completely done? Probably not.  One thing for certain, I could never be far away from their desks if anything was to turn out well.

When they were in the middle years, I was able to have a little more time to myself.  They worked on their own better than when mom was around.  They tested their boundaries. They learned lessons from books and from their own choices: good and bad.  During this time, I was able to have creative time, sometimes with the kids and sometimes on my own. These were turbulent years for us in so many ways, and homeschooling was a blessing.  I am not sure how we would have gotten through them if we had not been able to go through it all together.  People question why my kids are so mature?  A lot of life happened in those few short years.  We all grew old faster than normal.

Now we have entered a new phase.  I spend the day at the computer located in my office just across the hall from their rooms and today it finally occurred to them why.  I am on the computer most of the day so I am near them when they need me.  If I were in my sewing room downstairs, I am not as available when they need an opinion.  You see I don’t grade seatwork any more.  I don’t check spelling.  The truth is they have surpassed me in most skills.  They are talented, smart and very creative, each in their own way.   However, they still need mom to explain, confirm and reassure them.  One of the two, watches the news, reads the news and thinks a whole lot on the world he is soon to enter and work hard to change.  The other one sees the beauty of the world and wants to help others see that beauty as well, but her eyes often get clouded with doubt.  Her doubt blocks her creativity. Her doubt often causes her to miss the beauty staring back at her in a mirror.

From one room the call comes, “Mom does this sound correct?”  Soon from the other room the same question is posed.  Laptops in hands, they each come to the office and show me their work.  While one waxes philosophical, one poetic, both communicate an awareness of the world around them.

Yes a new phase is here.  Phone calls to institutions of higher education, college level studies, and an awareness of the political, social and economic trials of our times have become the order of the day.  So I now spend many long hours studying the internet (intermixed with a few moments of Zynga gaming) all so I can answer the call, “Mom what does this mean?”

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My Political Disclaimer

Okay fans and any general public that wanders this way – here is my disclaimer:  I do my best to keep my political beliefs to myself. However I am only human and I have a great weakness for stirring the proverbial pot.  So don’t condemn me for the political stuff I share, I am just trying to spread interesting tidbits.  You may like them, dislike them or simply may not care, but I hope they encourage you to think.  With all the “stuff” social media offers the participants, I like the “stuff” that causes me to think for a moment about something other than the “stuff” of my daily life (a life I love, by the way).

So please don’t take offense at the political “stuff” I sometimes might share, but more importantly don’t try to define me by it.  You won’t get the definition right.

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Fibromyalgia and Me – it’s about more than just the pain!

While I appreciate the fact that TV commercials are bringing to light the existence of Fibromyalgia, it bothers me that the perception they present is that Fibromyalgia is only about the pain.  Of course it is the drug manufactures who are paying for the commercials, so they have a vested interest in promoting the pain reducing benefits of their drugs.

However, the very real and potentially disabling pain is only one of the many symptoms that Fibromyalgia sufferers face on a daily basis.  From my own experience, reading and conversations with medical professionals, it seems that Fibromyalgia affects individuals in various ways.  Some may get a few symptoms, some may get a lot. Symptoms can range from intense bouts, or to unrelenting daily ordeals.

The medical community’s understanding of Fibromyalgia seems to still be in its infancy or at least its childhood.  When I was diagnosed, I was very fortunate to have access to a medical provider who preferred using drugs only as a last resort. This was very fortunate for me because I have a tendency to have the side effects so often listed in drug disclaimers.

I will never forget the day when I finally became too frustrated with the pain and knew I had to find an answer.  I had just turned thirty-eight and could barely sit up straight.  I could no longer pinch my thumb and index finger together with any force, and for a hand quilter this was devastating.  Rather than give up I turned to my computer and did a search of my symptoms.  To my utter surprise Fibromyalgia immediately popped up on the screen.  What surprised me more was the list of secondary symptoms that accompanied pain.

Now I use the term “secondary” only because of the widespread notion that pain is the only symptom. However I do not consider these symptoms secondary in any way.  You see, I have suffered from Fibromyalgia since I was an early teen.  I can trace the symptoms back at least that far and can pin point two traumatic events that might have triggered the symptoms during those years. I was a functioning, productive person through my teens and twenties, never letting the pain stop me.  Truthfully, during those years, I didn’t realize I was different from anyone else, and for the most part I had learned to push the pain to the back of my brain where it wouldn’t interfere with my plans.

By thirty-eight other symptoms were becoming real problems for me.  The biggest was the “Fibro Fog”.  I began to really worry because my short term memory was terrible.  I would also have times where my vision and hearing wouldn’t seem right. Not to mention stomach issues, anxiety, headaches and dizziness. Everything just seemed to be falling apart and I felt really old. I was especially upset because commercials said, “Depression hurts!”  I knew I wasn’t depressed, my family knew I wasn’t depressed, but I did hurt and it wouldn’t go away.

I am not much of a “why me” person but more of “why doesn’t anyone understand me” type when I don’t feel well.  I kept asking the question, “How did I get this way?”  I knew that a spine injury at thirty had started my downward spiral.  I had been a runner before then, but even with great medical help and therapy, I just couldn’t get healthy.  Every time I would get back into my exercise routine I would feel like I had the flu.  Sometimes it would be so bad that I would take a pregnancy test because I felt like I had morning sickness.  So not feeling well, I would stop the exercise and sleep more.  Needless to say the symptoms would reduce for a while so I would try it all over again.  For eight years I did this.  I also put on weight, reduced my work load and became virtually stranded in my home. To all those who knew me other than my family, I seemed relatively fine, but the myth was shattered the year I turned thirty-eight because I knew my mom was dying and the knowledge was crippling me; my mom was only sixty-four.  When my recent visit to a hand specialist left both the doctor and me in tears, I knew that I had to find out if anyone else suffered like me.

I really have been blessed in so many ways during the years since I was diagnosed.  I have had great family support, good counsel from a companionate doctor, a bishop who would listen when I needed to burden someone besides my family and who would give me work to do so I wouldn’t feel so useless.

Regardless of the support I have received, one of the hardest things to overcome has been the confusion over what Fibromyalgia is.  There have been times I have wanted to carry the WebMD’s symptom sheet (http://www.webmd.com/fibromyalgia/understanding-fibromyalgia-symptoms) around with me just so that I wouldn’t have to answer the questions.  Sadly I get the feeling that people think, “Just take a pill”.  When I encounter people with or who have family who suffer from Fibromyalgia, I am asked, “What do you medication do you take?”

Well I don’t take Fibromyalgia medication, but I support those who do. I sleep when the fatigue is unbearable and I work when I am awake.  I try to eat well, and binge on cheese rather than chocolate when the pain is bad.  I try to drink water when my body tells me I am not thirsty but I know I should be.  I try to drink milk regularly because it seems to cut down on my heartburn. I use an electric blanket or really hot baths when my skin hurts and my bones feel frozen to the core.  I often take naps after sunrise and avoid driving at sunset.  I take pain killers when my head feels like it will explode, but avoid them for other pains. I have learned to exercise slowly and find new ways to keep moving even when it hurts.  Most importantly I look for positive things to do when I feel good.  I make the most of those prime days; days when the weather is calm and the barometer is steady.  Oh yea, I have learned to laugh more and I encourage my family to laugh more as well.

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Welcome to Pithy Ponderings

Over the years I have been known to say things worth remembering, but I usually didn’t take the time to write them down and now I have forgotten them.  At times I have instructed my children to write down my words of wisdom, but they too neglected picking up a pencil.

In the effort of recording my random thoughts and observations, I have started this blog.  Some thoughts and observations may be seem odd, others might be witty and many might contain wisdom, but by the random nature of random thoughts, they will be posted randomly.

So if you like what you read, be sure to follow me on WordPress, by email or at my PioneerLady Facebook page, as I will post a link to that page each time I post to this blog.

As a note please feel free to write comments if you would like, but know ahead of time that I will delete anything negative because this is my world of pithy ponderings and I want to keep it positive.