Reprogramming

Yesterday, I updated my Interstim Device programming.  Since having the device put in the second time, I’ve gone back and forth to the office to achieve more optimal programming.  Knowing that my first device worked so well has encouraged me to not settle for “less than great” relief of my symptoms.  It’s been a struggle to have, then lose, then have, then lose the ability to control my bowel symptoms.  This cyclical life that I have been living for the past seven and a half years is overwhelming at times.  However, I am remaining positive that this time, with this programming, a difference will be made in my bowel control.

My device has been reprogrammed.  I am reprogramming.  Not only my device, but my mind and body as well.  I am encouraged that my device “feels” more optimal after this last set of changes. (time will tell).  I am doing all I can with diet and exercise to support the medical technology within me.  I am beginning to blog again, hoping to offer support in an effort to remember that my story is not mine alone.

Thanks for reading,

Lauren

Spring Training

Lately, I have found myself fixated on the fact that I just can’t work out. Because I fractured the wire on my first sacral nerve stimulator while engaging in aqua aerobics, I am worried, actually terrified, that something like that will happen again.  Since my “go to” when my emotions run high is food, I am gaining weight.  Gaining weight, mixed with an inability to exercise effectively, is a very wrong combination for me.

Prior to having my daughter, I always was an active person.  I enjoyed training, competing, and reaping the benefits of a healthy lifestyle.  After having my daughter, and extensive therapy, I was once again enjoying the benefits of going to the gym, being a reasonable weight, and a healthy person.  I even found that I could exercise carefully and effectively with my first Interstim placement.  Once pregnant with my son, and having my pelvic floor slip, being on bed-rest for 19 weeks, fracturing my Interstim wire, and recovering from another surgery, I have continued to lose that overall wellness I used to enjoy.

And I want it back.  But, I’m afraid.  I don’t want to fracture another wire.  I cannot afford the type of trainer I would need that would be able to look at my x-rays, determine wire placement, and recommend safe and effective exercises.  I cannot afford to spend weeks/months/years back in physical therapy.  I need something, but, I don’t know how to access it or afford it. I really would LOVE to be able to get something in place for “spring training.” Any suggestions?

Thanks for reading,

Lauren

“everything is fine.”

I think I’m over it.  I think, I’m healed.  And then I realize, come the final day in February, that the mind and the memories it holds, are powerful things.  I have been feeling “off” since this past weekend.  I’ve noticed myself tearing up at times, food numbing, spending time doing mindless tasks like surfing the internet, suffering extreme fatigue, among other things.  When talking with my husband about why I am seemingly depressed, his answer, “I’m not surprised…it’s the last day in February.”  And you know what, I’m not surprised either…now that I can logically draw a correlation between my segmented depressive episodes and my daughter’s original due date.

February 29th.  Due date. Leap year baby.  March 1, March 2, March 3, March 4, March 5, March 6, March 7, March 8, March 9, March 10, March 11, March 12.

12 days.  12 days overdue.  12 days to assess my situation. 12 days that something could have been done to prevent the trauma. 12 days.

Here’s what I did in those 12 days-back in 2008.

Ate ice cream.  Was told everything is fine. Went to post dates ultrasound. Was told everything is fine. Told my baby was 10 pounds 10 ounces. Was told everything is fine. Told to wait the weekend and come in on Monday, March 10th to be induced.  Was told everything is fine. Had failed cervidal induction. Was told everything is fine.  Had pitocin. Was told everything is fine. Had failed epidural. Was told everything is fine. Had failed epidural. Was told everything is fine.  Had failed epidural. Was told everything is fine.  In the hospital for 34 hours. Was told everything is fine. Had failure to progress in pushing after hour 3 of pushing. Was told everything is fine. Dislocated my hip when my leg was dropped. Was told everything is fine. Had failed forceps placement. Was told everything is fine. Had forceps placed. Was told everything is fine. Had baby delivered. Was told everything is fine. Had her whisked away with a bruised and battered face and head. Was told everything is fine. Had a severe postpartum hemorrhage. Was told everything is fine. Was given rectal meds. Was told everything is fine.  Had stitches for a 3rd degree tear. Was told everything is fine. Given my baby. Was told everything is fine.  Floor was covered in my blood, being tracked around by everyone’s footwear. Was told everything is fine.

So yes, as I subconsciously relive these 12 days, I should know “everything is fine.” Even though it’s not, and it wasn’t.

Thanks for reading,

Lauren

A Proud Message

Almost a year ago, I published a post called, My “Adult” Movie.  In this post I discussed the event of Medtronic producing a video about me in an effort to educate people about, and put a real face to, fecal incontinence.  Although it’s hard to watch myself, I am proud of the message I am able to portray in parts 1, 2, and 3 of my story.  I am linking the videos to this blog to allow others to easily access this information.  In addition to my videos, there are many other helpful videos that were made at the same time, talking about different facets of Interstim. These can be found once you view the videos I’ve linked below.  They will be in the sidebar.   I encourage anyone who wants further information about my personal story, or further information about Interstim, to take a look.

Thanks for reading, (and watching),

Lauren

Lauren’s Story, Part 1 of 3

Lauren’s Story, Part 2 of 3

Lauren’s Story, Part 3 of 3

 

 

 

 

We are never broken….

When my Interstim Implant broke, it was a moment of heartache for me.  That sense of security that I had relished in since August 2011, shattered.  The incontinence came back, full force.  Waves of devastation as I realized that I, once more, was pieces.  Physical and emotional carnage ensued….back to wearing protection, missing out on activities, physical pain and discomfort, emotional distress.  For me, all hinged on a successful re-implant surgery on November 21.  Sadly, even though I surrounded myself with the best surgical team, even though the surgery itself was successful, even though I spent 4 weeks in a restrictive lifestyle to give the implant time to heal,  the programming of the device has proved tricky this time.  The first time I had the implant (2011), I was lucky enough to get the right combination of programming right away, and within the first couple of days I noticed a drastic success.  This time, I am still waiting, waiting for that perfect combination of nerve stimulation to become programmed.

However, all is not lost.  After talking with my surgeon, I realize now that there are many combinations of programming that we have yet to explore.  Many ways that this device can make me whole again.  Many ways to heal these broken pieces.  Many ways to find peace.

Fittingly, this song has been on my playlist in our van as we have ventured out for the holiday season.  It makes me think about the birth trauma, my life after my therapies, my surgery, my role as an advocate, my current trials and tribulations, and the way that I can shape a negative experience into a positive one.  I hope you enjoy it as much as I do.

Thanks for reading,

Lauren

“Hands” By Jewel

If I could tell the world just one thing
It would be that we’re all OK
And not to worry ’cause worry is wasteful
And useless in times like these
I won’t be made useless
I won’t be idle with despair
I will gather myself around my faith
For light does the darkness most fear
My hands are small, I know
But they’re not yours, they are my own
But they’re not yours, they are my own
And I am never broken
Poverty stole your golden shoes
It didn’t steal your laughter
And heartache came to visit me
But I knew it wasn’t ever after
We’ll fight, not out of spite
For someone must stand up for what’s right
‘Cause where there’s a man who has no voice
There ours shall go singing
My hands are small I know
But they’re not yours, they are my own
But they’re not yours, they are my own
I am never broken
In the end only kindness matters
In the end only kindness matters
I will get down on my knees, and I will pray
I will get down on my knees, and I will pray
I will get down on my knees, and I will pray
My hands are small I know
But they’re not yours, they are my own
But they’re not yours, they are my own
And I am never broken
My hands are small I know
But they’re not yours, they are my own
But they’re not yours, they are my own
And I am never broken
We are never broken
We are God’s eyes
God’s hands
God’s mind
We are God’s eyes
God’s hands
God’s heart
We are God’s eyes
God’s hands
God’s eyes
We are God’s hands
We are God’s hands

 

A Bionic Pioneer

Last year, I was approached by a woman very interested in my personal journey with my Interstim device.  This amazing woman, Jennifer French, has co-authored a book about individuals and the way that neurotech medical devices have enhanced their lives.  I am one of those individuals.  Feel free to check out the press release and the book!  Thank you, Jennifer, for telling my story.

 

Thanks for reading,

Lauren

And this is why….

As you may have noticed, I have taken an extreme hiatus from chronicling my life and progress on my blog.  For whatever reason, be it moving houses , start of school year, 2 darling children that want their mother all the time, or starting a new job, my blog has been neglected, severely.  Regardless of the reason, I have found lately, that it’s been all too easy to ignore this part of my life.  Until today.

Today, two very important things happened in my life. 

1.  The bubble I’ve created around myself, the bubble that has existed as one of joy and wholeness from a fully functional Interstim device, has been shattered.  Sadly, while doing a seemingly uncomplicated water aerobic move I felt a snag, then a jolt, then a series of shocks in the area of my implant.  Upon further inspection, which included a week of me messing with programming, I realized today through x-ray images that my wires have moved.  The incontinence is BACK, the pain of a failing implant is severe, and my mood is sour.  Fortunately, all was handled expertly by my Medtronic Representative and rectal surgeon who have assured me that swift surgical repair of the wires will restore my functionality. Additionally, reprogramming of the device until surgical repair has offered some sense of relief.  And I realized, this is why.  This is why I need to continue to chronicle my own journey.  The incontinence never goes away.  This is a chronic problem.  A chronic problem with a wonderful solution (Interstim), but a chronic issue nonetheless, one I will struggle with, for the rest of my life.

2. Today I responded to 2 e-mails.  E-mails from women who have sustained incontinence as a result of nerve damage.  Women who are happy that they have found my blog in their quest for validating their own journeys in unfamiliar and terrifying territory.  And I realized, this is why.  This is why I write my blog.  My blog offers me solace, and it offers other people a hopeful message, an understanding,  and peace while dealing with incontinence issues, mental illness, and birth trauma.

 

And this is why, why I will continue to write.  Thank you for today, in validating my purpose and the purpose of this blog.

 

Thanks for reading,

Lauren

A Piece

Before.  Before I had my daughter, in March 2008, I was a person well versed in the art of lifeguarding.  I was a lifeguard, water safety instructor, swim instructor, special olympics swim coach volunteer, cpr/first aid certified.  I lived in the water from an early age, and at 15, decided to make lifeguarding my profession of choice until my college degree panned out.  At 15, I took my first lifeguarding course, and with ease, aced the physical and written portions of the exam.  Throughout the years, I kept up on all of my recertifications, and rarely did a day go by that my life wasn’t touched by water from 1995-2003.. I was either practicing, swimming competitions, teaching swimming, or lifeguarding. Upon graduating from college, I kept up on my certifications in lifeguarding, attending the requisite physical and written recertifications, but chose teaching in a land locked classroom as my primary objective in my daily life.  I always assumed I would keep up on these recertifications until lifeguarding would once again fit into my schedule, so as not to take the entire course over again.  However, that was not to be.

Another aspect of my life altered due to birth trauma.  Because of the incontinence, because of the pelvic floor weakness, because of the PTSD, because of all of these things-I was unable to keep up with my recertifications post partum.  In an instant, I lost a big part of me, a huge part of my identity as a person who practically grew up in the water, a person whose skin perpetually smelled of chlorine, a person whose very soul floated freely and happily everytime on the pool deck and in the water, doing something I truly loved.

This past week, I have reclaimed that piece of me.  Just another piece, previously shattered, picked up to create peace.  I have committed 20 hours in lifeguard training, experiencing and practicing intense and grueling physical rescues, as well as written examinations.  I have once again become a lifeguard.  I am able to once again watch the water and teach swimming lessons.  Why now?  Because I can.  Also, because I was offered a swim coaching position that required my certifications be up to date.  It was a battle, both physical and mental to obtain the courage and strength I knew I would need to regain this certification.  But I did it.  And, I’m proud.  

Thanks for reading,

Lauren

99 Calls

99 Calls.  As of next week, including my scheduled calls, I will have placed 99 calls as a patient ambassador for Medtronic.  In a little less than two years, I have spoken with 99 people regarding my experiences with Interstim.  99 “official” conversations about fecal incontinence have been expounded upon in an open and honest manner.  99 conversations that, prior to 2008, I could have never imagined having.  99 conversations that, on average, are 30 minutes a call, that’s 2,970 minutes, 49.5 hours, a little over 2 full days of talking about an issue that is stigmatized, traumatizing, and devastating to many people.

Modesty aside, I can say, I feel good about that.  I feel great that I am able to do something, able to help people at the time where they are questioning their future with fecal incontinence.  Able to alleviate fear and provide a sounding board for life’s stresses with fecal incontinence.  I feel as though I am providing a service that I so desperately craved at my time of decision, at the time where I was wallowing in the woes and uncertainty of a future filled with severe fecal incontinence.

The most amazing thing for me, however, is that 99 calls is just the tip of the iceberg.  The bowel disorders support group that I facilitate, the multiple e-mails I negotiate from my blog, and the conversations I have with people face to face all serve to get my story out there in an effort to let people know they are not alone! To date, this blog has been viewed over 17,500 times.  It is hard for me to even wrap my head around that number.  It is hard for me to imagine that those 17,500 + views have hopefully helped someone by educating them about my experience and hopefully provided empathy for the viewer’s individual experience.

I am grateful for the opportunity to share my story, and I invite you to pass it on.

Thanks for reading,

Lauren

You might scare her…

Sometimes, and often by well-meaning individuals, I am silenced from telling my birth story to others.  When in the room with certain individuals and a newly pregnant mother-to-be, I am sometimes told, “Don’t tell her your story, you might scare her.”  Aside from being condescending to my entire being, that statement is one that is pretty much in tune with the way things can be in the birth world.

The truth is, I “might” scare her, but more importantly, I “might” educate her about very real issues that were a result of childbirth for me, and, potentially, could be a result for her.  Too often, we paint childbirth as a time to be strong, to be courageous, to be natural…when we really need to paint childbirth as a time to be educated.  Not only do we need to be educated about the choices we “want” to happen, but the choices that “may” happen during the course of a child being born.  It is not enough to research and only validate one set birth plan.  It is not enough to think that nothing else will happen, simply because you are “strong.”  You need to be educated, educated in all possibilities, not just the ones that you think, or desire, to happen.

Sometimes, people like to qualify my birth experiences, often pointing to different points in my birth story as the “why” to “what went wrong.”  The truth is, I was not educated enough before going into the birth of my first child.  Sure, I had read EVERYTHING I could about childbirth, had attended birth classes faithfully, brought a list of questions to each Doctor’s appointment, engaged in conversation with my colleagues, friends and family.  But, that wasn’t enough.  Because the pervasive societal push is for natural, unadulterated, childbirth, omitted in mainstream literature are the gritty, nasty, true, and possible emotional and physical ramifications of a birth gone awry.  Too often, these stories are looked at as outliers, and sometimes even, scare tactics, where mothers are blamed for choosing too many interventions, or babies are blamed for malposition.

Yes, I might scare you, and if I do, good.  Maybe then you’ll seek to find out more.

Thanks for reading,

Lauren

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