Sharing the lessons along the way…

Posts tagged ‘intrathecal baclofen pump’

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?







Once I Knew a Woman…

The Tawny


She was living each day as if it was her first.  She was trying new things, and marking things off her list that she had wanted to do but never took the time to do before she became ill.

There was little that doesn’t spark excitement or intrigue.

The only evidence of her past life in the wheelchair was a titanium baclofen pump, which was visible only if she took off her clothes.  Only then did offer some explanation of what it was for, and only then did she have to acknowledge that past reality.

She could talk freely about the past and the wheelchair, but the story was void of emotion.  She could talk about the homelessness and nursing home experience, but it had become a story that was about some other 30-something-year-old woman.

There was no emotional connection to it, at all.  At least not until the day she toured the homeless program in preparation for her return to volunteer with her newly certified therapy dog, Duke.

She was clueless really that she had separated herself so much from that former life until that day.

It wasn’t really until the pump drama began shortly after that day, that she realized the amount of scarring this time in her life created.  The intensity of emotion was often overwhelming.  The thought of life without the pump was so scary that she would have done anything to keep a pump in her body.

This desperation proved costly for her, but the time spent experiencing problem after problem at least allowed her to acknowledge the trauma and begin to heal it.

Without the pump entirely, she still grapples with the integration of both lives—life with the pump and without it.  Life without the pump is different from how it was before the pump, with the pump, and different still than in the early months of the illness.

Sunday Sum Up #11

Week #11

This week has been quite an interesting mix of events.  I realized just how well my rehabilitation plan is working for me when I once again found my way up the stairs at the Homeless Emergency Project.  I am thrilled at where I am with the illness symptoms heading into the surgery to remove the Intrathecal Baclofen Pump.

Thursday, the long-awaited surgery to remove the pump actually happened.  As I waited to go into the surgery, I did a mental check to make sure this was indeed what I felt was the best decision.  I had no doubts it was time to let go of the pump.

Apparently, I had relief the moment the catheter tip was removed from my back Thursday because that is what I told the doctor during my surgery.  All of the hardware was removed and I am recovering from the three incisions.  I still have to wear something to keep pressure around my spine in the area where the catheter tip was to prevent a cerebral spinal fluid leak.

I spoke with the doctor and found out that there was a reason I was having so much pain and strange sensations in my back area where the catheter tip went into my spine.  It is nice to have some validation after 2 1/2 years of hearing I shouldn’t be feeling pain or that the burning torso has to be from something else.

Duke and I are taking the week off from the Homeless Emergency Project, but I will still be tending to my classes online while recovering.

The surgery pain seems to be getting slowly better each day!

I Can’t Believe I Am Here!


I cannot believe I am here.

I am in a place in my life where I am being transparently vulnerable in cyberspace.

If you had told me ten years ago I would be here, I would have laughed and laughed and laughed.

Being vulnerable was simply unacceptable.  Being openly vulnerable was unheard of in my world.  I did not know back then what it would take to change that.

I was actively working on it, but making only the slightest progress before becoming ill.  Through illness came opportunity for change because everything changed.

While I do not share every detail of everything with you, I am sharing the day-to-day trials and lessons from my experiences in most of the areas of my life.  My life includes titanium hardware and a progressive motor neuron disease, but my life is so much more than those things.

I could not have imagined sharing so much ten years ago or two years ago for that matter.

Today, I cannot imagine not sharing so transparently.

It is being vulnerable that makes us human.  It lets us be in touch with our humanity.  It allows us to see our interconnectedness.

It isn’t a bad thing.  I always thought it was, but it isn’t at all.  Our society isn’t a fan of vulnerability and has taught us many ways to avoid it at all costs.  Avoiding it is painful and lonely.

If I share, you share back.  We see how alike we are.  We no longer feel alone.

A week doesn’t go by that I don’t hear someone say they have lost faith in humanity.  Perhaps years ago, I had too because I was so out of touch with my own humanity.

Being vulnerable with you keeps me grounded in my humanity.

I cannot believe I am here.

What about you?  Do you find vulnerability scary?  Have you lost faith in humanity somewhere along the way?

Unpredictable Tuesday

baclofen pump image

Each Tuesday, I go for a reduction in my baclofen dose.

They place a sensor on my belly above the pump that’s under my skin, enter in what they want the new dose to be, then it is done.

It takes, at most five full minutes.

This time, I was there for nearly three hours.  It seemed the programmable part of the Medronic pump was unhappy being decreased any further because of the medication concentration—or something, I am not sure I really understand it.

What happened next is fuzzy in my memory, and even fuzzier is what happened after that.

Even as I write this nearly 12 hours later, I am still dopey, dizzy and incredibly sleepy.  My task is to stay awake for the doctor to call back to check on me.  It appears in the attempts to dilute the concentration of what was in the pump, I ended up with too much baclofen when it was all said and done.

I am going each week to reduce the dose so that I do not suffer from baclofen withdrawal syndrome, which can be fatal.

Having too much was never my concern, and although it is temporary, can also be bad.  It should be back to the new decreased dose by mid-morning today, but it was a pretty scary evening.

I could walk well and had no muscle spasms, but couldn’t see straight.  I was thrilled to be able to see straight enough to share this with you.

I barely remember getting home—my friend and her husband came to get me and the car.  Then I slept until Duke pawed me insistently to eat dinner.  I couldn’t remember later if they even got their medicine with dinner or if I had let them out when I got home from the doctor’s office.

As I tried to recall the day’s events and details, I realized something.  Just when things start to get a bit more predictable, they stop being predictable at all.

Sunday Sum-Up Day #7

photo (25)

Has anyone noticed that I have been blogging every day for more than 30 days now?  I am in disbelief about the amount of time that has passed, and here we are again on a Sunday catch up post.

It might be a challenge to do the past week justice in a post of 500 words or less, so we’ll see how this goes.

Yesterday, I shared how I fully grasped the lesson of transcending my circumstances.  When we look beyond our immediate circumstances, we find what is true, real, and important.  I learned this after one of my 12-year-old dogs had to have a large icky tumor removed and I was observing his reaction to returning home.

Dogs don’t have all that we have attached to surgeries, tumors, illness or pain, so we could learn a lot from watching them.

I am happy to report that after a rough first 30 hours after surgery, Amore’ is resting more comfortably.  Today, he should be behaving a bit more normally.

All of this came on the heels of my increased difficulty with mobility after the pump dose was decreased to 70% of the original dose.  I am walking quite stiffly and the clonus is worse, but I was able to make some gains after a delightful workout in my friend’s pool Thursday.

Even before the decrease, I had made the decision to use a power wheelchair when Duke and I work at the Homeless Emergency Project (HEP) last Monday.  While I was ok with that decision, it still felt like a huge emotional step to take.

I got through it, and learned many important things in the process—the biggest one was that it might not mean it is permanent.  I keep forgetting that the amount of rehabilitation I can do with each decrease is limited because of the pain.  I intend to do so much more work and to be doing so much better before this is all over!

My challenge for work at HEP tomorrow and Wednesday will be managing the walk from the car to the power wheelchair that stays there for me to use.

There is already a plan in place for Wednesday, as the next decrease is taking effect, for a different place to have the chair that is a bit shorter distance.

There are only three decreases in baclofen left before my pump will not be delivering anything.  I am sure more emotions attached to all of that will continue to surface in the next few weeks.

I am thrilled to be driving at only 30% of the original dose.  I might not be able to walk far into a store once I drive there, but I can still drive there.  I am still learning and growing through all the weeks’ events as well.

You folks are really a supportive and encouraging bunch, and my dogs and I appreciate all the love you shared this week!

***By the way, I have made a new menu option for the weekly catch up posts up at the top.

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