Sharing the lessons along the way…

Posts tagged ‘changing beliefs’

Here we go!

duke tribute cake

Today is the first day of November 2015.  It is the first day of the setting back of clocks one hour.  It is the first of all of this that I am starting without my Duke in the house balking the change of feeding times and walking times.

Ruby is a fan of routine, but she is fine with an hour or two differences in routine on the weekends.  She does not even care if the walk is happening in the dark in the mornings or in the day light, as long as she is getting a walk.  I will be curious about how she feels about the evening walk in the dark this week, actually.

I have enjoyed the additional hour of sleep today.  I have enjoyed being one hour ahead of myself all day and feeling like I was getting so much done before the time it would have been last Sunday.

Just the same, I am not sure I feel any differently physically about what time it is now.  I am as tired as I would be at 8pm even though it is barely 7pm as I write this.

I am excited for a new month, no matter what the time and daylight situation is because October has kicked my butt.  There was so much change in such a short period of time that I am not even sure what has happened last month.  It was all good—that I am sure of, but the rest is blurry because it happened at a warp speed that I am not yet accustomed.

There are intermittent distractions, but overall, I am focused and I am authentic and I am all about the mission before me.  I am struggling to keep those involved also focused on the mission, but I personally am quite focused.

What is interesting is that the mission as I see it has gotten larger as the days of October blew past.  The big picture is bigger and the mission is larger than I first thought as I entered into October.  It is ok.  I am rolling with it and it makes sense.  What is happening is bigger than me.  It is bigger than anyone who is involved in the mission combined, really.  That is ok.

I will rise to the occasion.  The folks involved will rise or not.  It is ok either way.  The mission is moving forward with or without us and that is quite clear.  Let us all rise and move toward something more!  Duke would want that.  Duke would expect it to happen, so here we go!





Surgery Anniversary Week

Jaycee's Birthday Present from Gramcee

Jaycee’s Birthday Present from Gramcee

“If you have already lost everything and made your way through it, what do you have to lose by trying to create something new?”

I have asked myself this question nearly every day for the past eight or nine years.  This question was part of a discussion or three that I had yesterday.  Because of that, I found myself thinking about just how critical it was to what happened next in my life.

It certainly became a valid part of moving outside of my comfort zone after illness, homelessness, nursing home…This shift got me out of isolation, guardedness and fear.  It allowed me to create a better quality of life, develop a social support network of quality people, and restored my faith in humanity in general.

This shift made room for growth in every area of my life.  I stopped fearing the risks.  I was empowered and more confident in my own ability to cope with whatever might come next.  Even through the last few years of pump drama, I felt confident I would figure out how to manage eventually.  I felt confident that I had many cheerleaders lifting me up to do just that.

My deepest fear was a repeat performance of losing everything, and I was often struggling with letting go of that fear.  The day I realized that it could never get as bad as it once was, and took back my own power, was the day I let that fear remind me of my strength.

Yet another pivotal shift in thinking that accelerated growth, allowed me to move through the pump drama, and ultimately the pump’s removal, to see the other side with more clarity.  It certainly isn’t perfect over here either, but it is lovely just the same.

This week, it has been a year since the surgery to remove my second baclofen pump.  While I continue to feel frustrated with limitations, pain, and such, I continue to move forward.  I continue to grow.  I continue to take risks, even when it would be far easier to not.  I continue to work, and I continue to feel grateful for a life that is overflowing with blessings.

It is almost as if I am finally growing into the very shoes I was meant to wear in this life.  There is a sense of quiet contentedness in being who I am; more so now, than I can ever recall.  It feels comfortable without feeling stagnant.  It feels like home, with the understanding that new paint on the walls and rearranging the furniture will always be necessary to improve upon it.

There is not anything in particular I am searching for anymore.  It was here all along just waiting for me to stop resisting, to stop fearing long enough, to look within to find it.

What do you have to lose by taking a risk?  The better question is really what do you have to gain?






Lessons from Amore

Post-op Amore

As I moved through my day yesterday, I realized yesterday’s post wasn’t a detour at all.

I couldn’t see it until after my Amore was home from the animal hospital and in my direct line of sight, however.

Talking about concern for one of my dogs isn’t a detour, as they have been significant parts of my life for the last 12 years.  They have also been some of my greatest teachers, and learning from them has been a true blessing.

I thought I detoured from the latest decrease effects and the pump removal saga that is unfolding day-to-day here in the blogosphere.  I thought it wasn’t of interest of you to mention.

Thursday I spent a couple of hours in my friend’s pool, so my legs were feeling better.  I wanted to share about that, and that I am starting to get used to my new legs and feet.  I even tried to write something and kept deleting it.

But I couldn’t NOT share about Amore’s tumor and surgery, as everything in this life seems to be connected.

While my big goofy dog lay on his dog bed, in my range of sight above the computer screen, his dopey face and eyes smile at me.  His eyes want to close, but he meets my gaze and opens them again.

He is happy to be home.  His brother is happy to have him home.  I am happy to have them both back here together.

That’s precisely why it wasn’t a detour.

The big dog over there has a huge part of his body shaved with a large incision down his side.  He doesn’t know he isn’t supposed to be anything other than happy to be home.

He isn’t worried about the cytology results or what kind of tumor it was or how extensively the vet had to dig around to remove it.  He isn’t even worried about how much it hurts or how much more it will hurt in the morning.

All he knows is that he is happy to be on his dog bed with his pack at the end of the day.

This is a step above adapting to circumstances if you ask me.  It is almost like the circumstances are irrelevant as long as there are a few constants—for More’ this includes his brother and me.  Sharing about my dog allowed me to see just how he transcended his circumstances—and probably with little effort.

If you ask me how I can smile though pain, keep moving forward so optimistically in spite of the literal and logistical difficulties in doing so, I might have to say it is because I learned it from my dogs.

A couple of years ago when we almost lost Duke, my vet said, “He doesn’t know he’s supposed to feel bad.”  What he meant was that dogs haven’t learned what it means to be sick or in pain the way humans have—we are supposed to behave in a certain way to fit that label.  Dogs have no use for labels, really.

Yes, a surgery, a tumor, cancer, or a diagnosis of a chronic, progressive illness can change the landscape of our world, but what if we live our lives as if we don’t believe that it has to?

***Thank you all for sending your love and good thoughts yesterday!  We felt them, really we did!

There is always a choice

“So, I read your blog today…”

Cool, and…?

“Should we take a minute to chat about your anxiety about the next decrease?”

Oh, well, I don’t think so.  I am anxious for all the same reasons I have been anxious each time—just the not knowing, but it feels pretty manageable.  Going below 50% seems a little different, but it is really just the same stuff…

“Ok.  I just wanted to make sure.  What is the plan?  Are you driving yourself?”

Ok, cool. Yes, driving myself.  Wednesday is when it will matter and Duke and I are going to work, so the backup plan for that is the same.  I think I got this.

photo (13)

By the time I had this conversation yesterday, I could hardly remember what my blog was about.  Blogging every day is wonderful, but I do tend to get them mixed up in my mind.

In the meantime, Duke and I had been to HEP in the heat.  I rocked the stairs while Duke, the cutest dog in all the land, rocked the rest.  During this conversation, I was in the floor with the cutest baby in the land.

I hadn’t forgotten I was anxious, but I had been amply distracted.

There really is nothing that different about this decrease than any of the others.  The gradual nature of the decrease in doses isn’t likely to create a scenario that doesn’t already have a plan.

I have been as proactive of a planner for this as I can imagine being, so it is only when I forget that there is a plan in place (and several backups) or forget that I can handle whatever happens, that I tend to feel anxious.  That has happened more in the evenings on the day of the decreases.

If I let myself go back in time to compare where I was early in the illness to some of the symptoms I have started to have again with the baclofen decreases, I can freak myself out a bit too.  I wonder sometimes if that happens unconsciously when I am less distracted.

While knowing the relative order of symptoms from pre-diagnosis, pre-pump years is helpful information, it comes attached with some seriously intense emotions.  Even recalling my symptoms during the pump swap in 2011 has some serious fear attached.

Those emotions are great for my book and for relating my story to others, but aren’t helpful to conjure up now.  Fear isn’t center stage on this leg of my journey.

That was how it was, but it is not what I choose this time.

Bring it, Monday!

photo (5)As a kid, I used to want to learn how to play new games that my big brother always seemed to already know how to play.

I would ask him to teach me.  He would, but he always seemed to change the rules around just as I was getting the hang of it.

I threw a fit because it was so unfair.

There are situations in life just like that older brother’s “teaching” style.  The rules change just as you get the hang of something, or someone changes the rules before you can.

We collectively have fits because life is so unfair.  Living with pain, chronic illness and a whole host of other issues isn’t a fair game.

But what happens if we change the rules as they apply to how we handle these?  What if I can change the rules preemptively or at least soon enough to skip the pity party about how unfair it all is?

I have decided to do just that.  I have decided this week will be different from the previous two.  I will create my own rules of dealing with the decrease in intrathecal baclofen.

It is no longer ok that my life is put on hold while I wait the 24-48 (or 56) hours for each decrease to take effect.  It wasn’t ok that I was buying in bulk and doing tasks in the days before either, so I changed that.  I changed it to be on my terms, which was an improvement.

Now I change the rules even more.  I go back to doing as much of my “normal” schedule as is safely possible  while I experience whatever the decrease has in store.

It is no longer unfair that I just get used to one level of mobility before moving to another.  It is very fair.  It means I have more time to rehabilitate each loss.

It is a new week.  The game hasn’t changed this week.  The rules I intend to follow will not be my rules from earlier weeks, however.

What rules can you change so we can compare notes?

The Past, the Present and Perception

IMG_0324Everything we see in our day-to-day life  is seen through the lens of the past.  In fact, our brain’s perceptual system is wired to interpret everything based on what we already know.

I teach this to my students, and each class, I am able to understand another level of my own thoughts, beliefs and behavior through our discussions of the topic.

I appreciate the irony that this has been the week we discuss this topic.  When we are present and aware, we can override our brain’s natural tendency to put things in past perspective.

I have shared some about my attempts to stay present as I wait to see what happens next with each baclofen dose decrease.

All I have to go on to attempt to anticipate or predict what is next, is the past, which quite frankly is only somewhat relevant.

What I know about the past without the pump has allowed me to prepare so that whatever level of mobility I avoid unnecessary injuries.  That is important and is the grounding I need to move forward.  That should be that.

But it hasn’t been.  I have continued to spin it around in my mind.  I have tried to remember each stage of the increase of the dose when this pump was implanted to have a better idea.  That isn’t grounding for me.  I am missing right now.

Monday, my neurologist summed it up nicely when we were talking about my pump doctor’s reluctance to continue the decreases.  “We cannot know what will happen until it happens,” he said.

When I relayed this to my pump doctor Tuesday, he laughed.


Kitt O'Malley

Bipolar Writer and Mental Health Advocate


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