Sharing the lessons along the way…

44th Birthday Presence

happy birthday return

On my 44th birthday last week, I flew to California for a training at Stanford University.  I knew the week would be challenging with the time zone change, the traveling with catheters and a walker, and with the intensity of the training all week from 9-5 during the day.

As you may know about me from reading my blog in recent years, I am always up for a challenge.  I am always up for an opportunity to test the limits of my abilities, and was very eager to see how it might go.

I hoped that if nothing else, my excitement for bringing this Stanford developed and researched program to the homeless folks HEP serves would help me through the challenges.

As life usually goes, there were some unexpected challenges and monkey wrenches thrown into the mix as well.

Me birthday44In spite of all of it, I am happy to report that I not only survived it, but rose above the challenges to (dare I say) thrive under all the challenging circumstances.  I learned a lot about myself in the process as well.

When I felt like I was in over my head by midweek, all it took was reaching out for some support to feel less so.  I did so without hesitation even (yes, I say this almost surprised myself).

I was fortunate that there were several cheerleaders on the other end of the phone at my organization.  By midweek, I was also able to get some quality sleep and work on only one time zone instead of splitting between east and west coast times.

During the intensive training that required much attention to a variety of details and processes, I was also still facilitating my online psychology course, compassionately helping others to manage their own difficult emotions, and visited briefly with family I hadn’t seen in nearly a lifetime.

Of course, I missed my dogs terribly and felt a bit disconnected from my own life here on the east coast.  I garnered a new appreciation for text messages that served to ease the disconnection, and received lots of updates about the dogs.  I met some very cool west coast folks with dogs to get a few dog fixes while away too.

I learned that traveling with a walker is a pain in the ass, but that I was making it more so by always wanting to have it with me on the trip out.  I let the airlines take possession and control over it on the way back, which certainly eased that self-imposed challenge.

I learned that I miss learning in that type of environment, and then remembered and could apply everything I knew about research, program development and implementation.  It seems like a lifetime ago that I did that stuff, and I didn’t expect that it would come back so easily.

The coolest part was that each day was its own day without much of an effort.  If I didn’t do very well in training activities one day, I applied the feedback I received to improve the next.  I never let one day negatively influence my performance the next.

My negative performance didn’t negatively influence the quality of time with my family from the west coast either.  I was just as present and able to enjoy those times, as well as some other really fun and fascinating experiences outside of the training day.

Having a chronic illness with energy and mobility challenges tends to impose its own limitations without me imposing more in my head.  So when I realized that I was doing that, I simply stopped doing it.

I didn’t have to use much effort to be present and open to the opportunities in the moments, and if I had to pick one thing that helped the most through the challenges, that would have to be the biggest one.

While I am happy to be back home with the pups, I couldn’t be more thrilled to have had this wonderful growth opportunity for my birthday!

 

 

Gratitude is…

gratitude

After a few really trying years, it really feels good to wake up each day with more things than I can count to be grateful for in this life.  Sometimes I wonder if I am not the luckiest woman on the planet, despite the unfortunate things that have happened in my life.

I remember a couple of decades ago when Oprah was first starting to talk about gratitude and how she recommended everyone keep a gratitude journal.  I certainly wasn’t close to being able to see and feel the gratitude I feel today, but I distinctly remember seeing that show and wondering if it could be something helpful.

Several times lately, I have been asked something and the only answer I had was, “I am the luckiest woman on the planet!”  I am asked often about my health, my mobility and my jobs, and this is all I can really say about any of it.

Today, I had the opportunity to share with a friend quite a bit of the very long list of things for which I am grateful.  I never imagined being where I am today, doing what I am doing today, having the perspective I have today, nor growing into the woman I have become today.  This friend has seen at least the last 10 years of growth and has definitely contributed to it.  Of course, countless people have contributed to my growth and development at various twists and turns on my journey.

Back then, all I knew was that I sought to heal old wounds, and grow into a more loving and compassionate human.  I knew I needed to shift my way of thinking and relating with the world.  It honestly wasn’t until I got this rare motor neuron disease that the growth started to translate into daily life, but it was more a matter of being able to get through the day at the start.

The shift in perspective happened gradually over a couple years until all I had sometimes was gratitude for the little things.  The little things added up over the years to where I honestly wake up most days feeling like the luckiest woman on the planet—even when I forget to make my coffee the night before and have to use a catheter to pee.

I don’t really believe in luck, for the record.  I am not even sure there are any coincidences or accidents in this life either.  I am as grateful for the hard times as I am the times like recent weeks where I am fueled by gratitude.  Growth continues to happen either way and there is a lesson tucked inside everything if you look hard enough.

The Power of Words

WORDS have power

I have written several posts lately, but have not posted them.  It is funny to me really.  It isn’t because I think they are bad or because I am not happy with them.  I simply decided not to post them.

Instead, I have decided to share what I learned from writing them and choosing not to post them.

Words have a lot of power.  Words have the power to lift us up, drag us down and all variations in between.  They have the energy and power to heal, and at the same time, I have come to realize, that sometimes words can be a bit empty and have harmful energy too.

With selfish or ill intentions, or no actions behind them, they are simply a bunch of letters strung together into words, put into some order that makes a sentence or three.

For me, words have great meaning and power.  I don’t often say or write something that I don’t mean and don’t often share things that I am doing unless I am doing them.  Stringing words together into meaningful sentences is almost a spiritual practice for me.  I cannot expect that is the case for anyone else.

What I have learned is that this is my personal practice and my belief system about the practice, but not necessarily anyone else’s.  It’s ok that it isn’t.  It’s ok if it is.  What matters to me is what I do with my words.

My goal with my words is to pay forward what I am learning from my experiences with chronic illness and life in general.  Someone out there in cyber land may find my words helpful, inspirational, or relatable.  The intention is to share the lessons in order to help someone else or offer hope.

The lesson for me in the not posting was somewhat liberating.  I am only responsible for what I say, what I do, and how I choose to be in this life.  While I may have known that already on some level, sometimes in my efforts to help others, I accidentally make myself responsible for them too. Fortunately, I am not!  Shew!  I feel like I have my hands full already with just my own!

Step by Step

step by step

For the past two weeks, I have been trying out a rather rigid routine for the dogs that has required me to walk a great deal more than I was.

My goal when I got this fancy pedometer was to stay around 8,000 steps a day because it seemed that over that made for a harder time walking.  The two weeks prior to adopting the new routine with the dogs, I only had a couple of days that were actually under the heart-healthy 10,000 steps, so I made an executive decision.

I decided that a better relationship with Ruby and a happier Duke were worth being well over my 10,000 steps by early afternoon.  To do this, I have switched around when I take the tizanidine, which is a systemic muscle relaxant in the same class as baclofen.  On most days, I take a small dose in the mornings now.  I had agreed to take a large dose at night, but was not willing to give up my brain in the day time hours if I didn’t have to.

There was a week where I was able to take it every morning (I had a week between classes) so I am not even sure I have that much of a noticeable brain function issue now.  I also found a decent enough ankle/foot brace that is helping to keep my left ankle more stable, and it even picks up my drop foot a bit too.  Once my quads get tired of lifting my feet high enough off the ground, I tend to trip more, so this brace seems to be helping the foot come up anyway.

It is quite a challenge to keep up a house, two dogs, a yard, etc. without walking over 10,000 steps per day.  Doing less means that not everything gets taken care of that needs to get taken care of, and that includes my dogs, groceries, etc.

I didn’t see any real difference as I have implemented these changes, except for more pain from tighter muscles in my feet and legs, and a bit more clonus later in the day.  At least it didn’t seem that notable until we got a second, but brief, cold snap.  It seemed back to par once it warmed back up.  We have an even colder one to come this week, so I will be interested to see how my body manages to accommodate to the extra walking.

The walker is a huge help in the longer walks with the dogs and there are some days that I probably wouldn’t be doing it if I didn’t have the walker to propel me forward.  With the cold (or the culmination of the two weeks of more steps), the steps got stiffer and slower, but the dogs didn’t seems to mind.

Since I get a lot of activity in the mornings, I am generally wiped out by evening time.  I am satisfied with that as a result if I am able to take care of my responsibilities each day.

 

 

 

Another Fallen Soldier

Fallen Soldier

When I said, “I feel like more people have helped me along the way in my life than I could possibly ever help”, he said, “Now, wait a minute.  I doubt very seriously that could be true.”

He always offered encouragement and was quick to point out when others sold themselves short—including me.  I was also allowed to call him out on it because he did it too.

He was one of the sickest men I have ever met from agent orange exposure in Vietnam, but one the most giving.  Since I met him, he has died many times and been brought back.  After more than four years of being dead man walking with aneurysms ready to blow in various parts of his body and minimal heart function, his heart is now at rest.

I heard today that he died last Friday.

When he talked about dying over the course of the last four years, he said, “I have been blessed and have lived a good life.”  He wanted to spend whatever time he had left giving as much as he could and enjoying his life as much as possible in between his dialysis schedule three days a week.

He recently lost his best friend to suicide and I am sure that took a toll on his overall health.

It was because of my Duke that he and I connected years ago.  Duke and he formed an immediate bond and my bond followed.

He didn’t talk highly of himself because of his past, but I couldn’t find a negative word to say about him in the time I had the pleasure of knowing him.  His take on giving was similar to mine.  We choose to give without any expectation of anything in return.  If we have it to share, we will share it with our whole hearts.

I watched him give to others freely and lovingly over the years.  It made him feel good to do it and I would imagine that he has helped out a heap of people himself, although he would share very little about it.  He was humble, courageous, like Rain Man with numbers, and truly knew he was blessed to be alive each and every day I knew him.

I was honored to know him, love him and admired his strength of character.  What he has contributed to this life will live on in all of us who had the privilege of crossing paths.  Rest easy, friend.  You will be missed.

 

 

 

dogs

One of my strengths is that I view the world in terms of what is possible.  One of my weaknesses is that I don’t focus enough on what is.  I simply see what is possible and continue trying to facilitate those possibilities.  Some situations require a bit more focus on what is and require a step back from what is possible.  What is possible can’t be possible without the step back to what is.

Let me give you a recent life example.  In August, I brought a beautiful greyhound into my home.  She has a lot of potential both as a therapy dog with me at work, and as a companion for me and her elderly brother Duke.

My new Ruby is a loving, smart dog with a tendency toward independent thought, much like Duke.  It is part of why I knew she was the one when I was seeking out a second dog.  Also like Duke, she comes with her quirks.  She has some tummy issues and is prone to anxiety with any change in routine. She seems to like to eat hard plastic items such as flower pots and Frisbees.

At the same time, Duke is experiencing an exacerbation of his quirks because he has to be on prednisone to manage his bad back.  He tends to get into garbage, eat paper products and now just about any food will become his in a matter of milliseconds.  He runs off both here and at work.

It is new to me to have two independent minded dogs living under the same roof to begin with, so her new quirks and Duke’s quirks have created quite a challenge for me to manage.

Over the past week, I became aware of the need to step away from the potential, and instead strategize better for the what is right now.  I paid close attention to what both of them needed me to do the most and then figured out the best way I could achieve it for them.

Ruby needs more consistency and better bonding with me to reduce her anxiety.  That is best done with our walks.  She needs all plastic removed from the environment, so yesterday’s focus was swapping out plastic pots and replanting plants.  Duke needs a closer eye and for me to pay more attention to what I leave him alone in the room with.

We started a new routine last week that pretty much ruins my plan for less walking, but seems to be helping both dogs.  It doesn’t hurt Duke to walk farther on days he doesn’t work because it keeps his muscles strong, so it is his new physical therapy.  He and Ruby are starting to really sync on walks, and all of us are developing a stronger bond as a result.  Then Ruby and I walk more after we drop Duke back off at the house.  Ruby’s anxiety when I leave the house has improved, her tummy seems stable, so we are going to keep this plan for now.  It is where we are right now.

As for it requiring me to walk more, I have gradually increased the steps, and increased one of the medications I take to reduce spasticity, so I will manage it.  It is what is in front of me, and it is the best of several tried strategies so far to make having two quirky, loving and independent minded dogs more manageable under the same roof.

My dogs historically have taught me so many lessons and made me pay more attention at very pivotal times in my life.  While this was about them, it was also about other areas of my life that were in need of a step back from the possibilities to the what is.

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