Saturday, April 27, 2013

Life is fragile . . . enjoy the time you have.

My beautiful Hootie
Life is so full of unexpected events and life is so fragile.  Last Tuesday I lost my robust and full of life kitty, Hootie.  I am grief stricken and so sad.  He was a gentle soul and he followed me around the house and out in the yard just like a good dog would.  Wills is grieving too and he misses his buddy that was always more adventurous and led the way with Wills 10 steps behind.  But is was Hootie's adventurous spirit that may have hastened his demise.  Hootie was outside with Wills and Gabbie and when they came in the house Hootie was full of dust.  He like to take dust baths in the loose Arizona mountain soil during this dry season so I didn't think anything of it.  Sid said that Hootie didn't look right and the fur around his mouth was wet.  I took Hootie outside to brush him off and check him over, but he ran away from me not wanting to be bothered.  I didn't chase him since I always give my cats their own control and I assumed he would be back on the porch within a few minutes.  But Hootie never came home.  I am thinking that he may have been stung by a scorpion and possibly went into convulsions and then died, although I haven't seen any scorpions around the house inside or out.  I will never know for sure.  It seemed logical that Wills, who is older and appears more frail and thin, would have been gone before Hootie.  It seemed that Gabbie would have been next since she is losing her eyesight to cataracts and lost her hearing at least a year ago.  But life frequently doesn't follow my logic and the orderly fashion I have designed.  That's when I am completely surprised by life events and I think, "But that's not the way I had planned it."

My precious Wills
Whenever life is snatched from those we love we try to make sense of it and think that if only we would have done something different the outcome would have been different too.  It's only human to believe that we actually have that much power.  The fact is we are quite powerless in many aspects of life.  The only power we have is the small amount of power we have to make decisions about our own life and about the attitude we choose to have.  That's all.  That's pretty darned pathetic when I think about it.  I like to think I have so much power over myself, but as I write my body is continuing to decline, which is actually true of us all.  Some maybe decline faster than others, but after age 20 our bodies begin their decline no matter what we do.  So the purest sense of power lies in our attitude and the manner in which we choose to live life.  It is important to me to live my life with courage and enthusiasm.  I have grieved my loss for several days, but then it is time to pick myself up and begin moving forward again.  Moving backwards or remaining stagnant is not my style.  I appreciate the time I have or have had with family, friends and all the living things that come into my life.  No matter how much time I have or how fleeting it may be, I am grateful and I let go of any personal agenda to control that time I have.  In that way my time is pure and it is quality time that allows each life the liberty that life deserves -- no controls, no possession, just being and enjoying each breath.

Cute Gabbie
I miss my little Hootie and I know I will miss him for a long time.  But I also know how important it is to let go and allow life to follow its own path rather than try to force a path that I have chosen.  Grief and stress are difficult, especially when dealing with a chronic illness.  Grief and stress always cause our symptoms to flare so it is important to manage and minimize the effect these two necessary and yet destructive forces can have.  We are survivors and we are warriors.  We have resilience and determination.  We may fall, but we always get up again.  I want to share a favorite poem.  I have enjoyed the spirit of this poem since I was in my 20's.

Edmund Vance Cooke
How Did You Die?     by Edmund Vance Cooke  (Born June 5, 1866; died December 18, 1932)

Did you tackle that trouble that came your way
   With a resolute heart and cheerful?
Or hide your face from the light of day
   With a craven soul and fearful?
Oh, a trouble's a ton, or a trouble's an ounce,
   Or a trouble is what you make it.
And it isn't the fact that you're hurt that counts,
   But only how did you take it?

You are beaten to earth?  Well, well, what's that?
   Come up with a smiling face.
It's nothing against you to fall down flat,
   But to lie there -- that's disgrace.
The harder you're thrown, why the higher you bounce;
   Be proud of your blackened eye!
It isn't the fact that you're licked that counts:
   It's how did you fight and why?

And though you be done to death, what then?
   If you battled the best you could;
If you played your part in the world of men,
   Why, the Critic will call it good.
Death comes with a crawl, or comes with a pounce,
   And whether he's slow or spry,
It isn't the fact that you're dead that counts,
   But only, how did you die?

From 101 Famous Poems, Contemporary Books, Inc, copyright 1958, pg 44.

Blessings to my beautiful kitty, Hootie, and blessings to you as you face all the unexpected events that life has to offer.  Life is so fragile and every moment is a gift!

Tuesday, April 16, 2013

In the Darkness of Night . . .

In the darkness of night I walk alone --
  I hear the night winds as they howl and they moan.
And on and on the winds howl and they moan.

I have no control as I search for some sleep
   and the restlessness over my body does creep.
And I search for my sanity and for some sleep!

I look out into the void of the dark,
  but the images I see are really quite stark.
And all that I see is the void of the dark.

As the night slips away to yield darkness to dawn
   I pace and I prowl across the dew laden lawn.
And I pace and I prowl 'till the light's early dawn.

As night turns to day I know night will return
   and that is the time again I will yearn
For sleep that evades me . . . I continue to yearn.

As night falls again that feeling appears
   and the night drags along into years and more years.
And that feeling creeps into years and more years.

Although it appears that alone I do pace
  while "It" creeps and crawls all over the place!
I know that alone I never do pace.

There are others that fight this battle not won
  from first hint of dusk until the first light of sun.
This is a battle that cannot be won.

A flicker of light in the east does appear
   and heralds the day and dissolves all the fear
As sunlight dances away all the fear.

And "yes" I'm still here!

My earliest recollection of WED/RLS was in my childhood, but the symptoms didn't start in earnest until 20 years ago following an injury.  I have actively fought nightly with this disease for the last 20 years.  Blessings to you as you walk alone through the night!

Willis-Ekbom Disease (RLS) Nightwalkers beware of MSG!

The Willis-Ekbom Disease Foundation is an excellent resource for anyone experiencing the symptoms associated with this disease.  Formerly known as the Restless Leg Syndrome Foundation, the Foundation has officially changed their name to reflect the seriousness and more global symptoms people frequently experience with this disease.  The WED Foundation distributes their quarterly publication to their members, which always contains valuable, cutting edge information.  The WED Fountation also conducts Webinars that are open to their members.

In the WED Foundation Winter 2013 edition of "Nightwalkers -- In search of a good night's sleep" there is an article titled "Can MSG Affect WED/RLS?" authored by Norma G. Cuellar DSN, RN, FAAN, Professor, Capstone College of Nursing, University of Alabama.  In this article Professor Cuellar discusses the hazards of MSG, which most often can be found in Chinese food and in processed foods.  According to Professor Cuellar MSG contains the salt of glutamic acid, which is naturally found in many foods such as vegetables and seaweed.  It is possible to develop glutamic acid toxicity if too much MSG is consumed; the body also has the ability to produce glutamic acid.  In addition, MSG has been known to cause allergic reactions that include skin reactions, headaches, dizziness or more serious reactions such as irregular heart rhythms, seizures and depression.  Professor Cuellar goes on to say that "MSG has been associated with cognitive disorders, endocrine dysfunction, migraine headaches, attention deficit hyperactivity disorder, Alzheimer's disease, autism, obesity, addiction, and sleep disordered breathing."  Food manufacturers are required to list MSG in the ingredients list on packaging labels so be sure to read the labels.  MSG continues to be added to processed foods and Chinese food despite the evidence that this food additive can be detrimental to your health.

MSG intake has additional health implications for those of us that are 'Nightwalkers'.  Glutamic acid is a neurotransmitter that may impact dopamine metabolism; dopamine is linked to WED/RLS symptoms.  A number of studies have demonstrated losses of dopamine in the brain following the intake of MSG.  There are currently no studies that have included WED patients so there is no research supported evidence that MSG affects WED symptoms, but some patients have reported improvement in their symptoms after eliminating MSG from their diet.

MSG is a food additive that has long been known for adverse effects therefore it is beneficial for everyone to avoid processed foods containing MSG.  But for those people that are the 'Nightwalkers' the implications are even greater.  To be informed about the latest information about WED, join the Willis-Ekbom Foundation and get connected to a community of people that provide support to one another and provide leadership for cutting edge WED/RLS research.  Blessings to you as you search for a good night's sleep!

Cuellar, Norma G., DSN, RN, FAAN, Professor, Capstone College of Nursing, University of Alabama. Winter, 2013.  Nightwalkers -- In search of a good night's sleep, pg 9.

Tuesday, April 2, 2013

Owee Kazowee . . . It's a pain!

Arizona sunset in my front yard
I read a number of blogs and a frequent theme is related to pain and pain management.  Why wouldn't it be?  Pain, whether it is acute or chronic, is always in your face every day no matter how much you try to ignore it.  Many of us use a combination of pain medications throughout the day and night in an attempt to manage our pain, but new findings have demonstrated that using these medications are actually counterproductive.  Long-term narcotic use actually magnifies any pain you may have anywhere in your body.  (Jaret, Peter.  2013, April, AARP Bulletin, Fighting Pain, pg. 10 - 12).  I suspected there was a rebound effect from pain medication use, because I experienced this first hand after using Vicodin for only a short period of time.  Prescription opioid pain medications are now the leading cause of drug overdose deaths in America.  Despite decades of research on how to manage acute and chronic pain there still are no easy answers.  Most pain management clinics are now weaning chronic pain patients off their opioid medications and replacing those medications with a variety of strategies to manage their daily pain.  I use my pain medications judiciously, but I am personally terrified of the thought that I would have no access to pain medication.  I've been there, done that and it didn't really work all that well.  Managing pain every day throughout the day and night is already a full time job.  I can't possibly spend the entire day meditating in an effort to control my pain.  That was the suggestion I received from a pain program I attended 20 years ago.  The reality is that opioid pain medication won't eliminate pain completely and so a number of strategies must be used to get through each day.  For me, balancing pain management strategies with sensible pain medication use currently seems to be the best approach.

A javelina at my bird feeder!
It's a mistake to take larger and larger doses of opioid pain medications so I stick with a regimen that provides enough relief to take the edge off my pain and I resist the temptation to increase my dose in an effort to get additional pain relief.  It just doesn't work and that's the bad news.  The good news is there are other strategies that give me relief throughout the day and using these strategies have become second nature so it doesn't feel as though I'm spending my whole day managing pain.  There are some days that are so bad -- I feel so sick, am plagued with exhaustion, and have so much pain that functioning is difficult.  Those are the days when I lay low and do nothing more than pamper myself and rest.  It's important to listen to our bodies, because they give us clues (some clues are louder than others!) about what they need, and to ignore that gets us into trouble.  I save Vicodin for bedtime, because it's critical to get enough sleep.  Depending on my activity during the day, Vicodin may not be effective, but I have other "tools" in my pain management toolbox.  I have found that distraction is the very best medicine and is far more effective than any pain medication I have used for my chronic and unpredictable pain.  Not moving is the kiss of death.  The hazards of immobility is something nurses learn in their very first class in nursing school, because to keep people moving is critical to everything that ails them.  When people cease to move, their body starts to deteriorate immediately on many levels.  It seems so opposite that we must get up and move when we feel sick, exhausted and in pain, but that's exactly what we must do.  I tend to reject the workout program thing.  Instead I incorporate exercise throughout my day.  The key is to do what you enjoy and brings you joy.  I enjoy going for short walks with my two cats and my dog.  They are all getting older and my dog has two congenital heart defects and taking Enalapril so they all move at my speed!  I also enjoy gardening so I have trimmed down the amount I have to do so it isn't overwhelming, but keeps me moving.  Caring for my cats and dog, and feeding the wild birds also keeps me moving and I have my daily routine to provide them with what they all need to thrive and that brings me joy.  When I stop moving I have a tendency to have more pain and I have to be careful not to overdo.  While I was checking out the bird feeder the other day I was surprised to find a 40 pound javelina grazing on bird seed.  Now that was a distractor from pain!  Ha!  Listening to music while I cook or during other activity distracts me from my pain.  I spend time with my kitties and dog . . . I'm sure that rubbing my hands in a fur ball lowers my blood pressure, diminishes my pain and is very therapeutic in a meditative sort of way!  And they love it too.  I socialize as much as I am able and I love to read; both great pain distractors.  It's all about focusing my senses on environmental stimuli that are able to override the pain I feel.  Night time is the biggest challenge and that's why I save Vicodin for bedtime.  At night everything is dark and when the lights go out there is very little sensory stimulation to override pain, so my complete attention is on painful stimuli.  When I am having difficulty sleeping I go out to the living room and turn on the TV.  I may also do some reading while I'm watching TV, which engages a number of my senses and helps to override the pain.  When I feel sleepy I lay down on the sofa and watch TV and then I am able to fall asleep.  So for those nights I need additional environmental stimuli to override my pain and other discomfort.  Sound machines in the bedroom serve the same type of distraction.
A javelina mug shot . . . Harvey the Javelina!

Another important piece of the pain relief puzzle for me is to maintain my sense of humor and not to give in to this monster that threatens to rob me of my life.  One element in my life that helps me to keep going is trying to keep up with Sid.  When I can't keep up with him I make concessions and alter my level of participation in an activity.  I maintain a mental attitude of wellness rather than sickness.  There's that old saying that when you pick an attitude make sure you pick a good one.  And your attitude determines your altitude. I make a point of getting out of the house every day and interact with the people around me.  I also joined the local garden club to give me some activity that gives some of my time structure.  I may not be able to do the heavier work, but I have skills that will benefit the club in a number of ways.

A javelina mug shot from the other side . . . bristled up and ready for a fight!
All of these strategies may seem so simple, but they do work to provide relief for at least a little while.  Pain relief efforts are just that:  effort.  It requires planning, work and lots of determination.  But that's a small task for a warrior!  All of us would love to be completely pain free, but that just isn't realistic.  The most important component of my pain relief program is being connected to all of you.  Being connected with others that are struggling every day to manage pain gives me a feeling of comraderie and I know I'm not alone.  It also gives me hope too.  Never, never give up hope.

Current research is working on a variety of ways to manage pain.  One approach is to block the pain signals from their source.  The experience of pain is a very personal experience and finding pain relief strategies is personal too.  We can give each other ideas with the strategies that we use, but each of us must define what works for us.  Some people have found pain relief from accupuncture, accupressure, tai chi, meditation and massage.  Whatever works for you, do it.  I'm sure there are some very creative ideas on how to manage pain!  Please share your thoughts with all of us . . .

Meanwhile, I think of you all every day and hope you are finding pain relief for even the briefest of moments and that you have hope and peace and joy in your life.  Blessings to you on this difficult journey!