Libbys on the Loose:2 Humans. 2 Great Danes. 1 RV.: Jeanine's Story - Why do I want to do this?!

Monday, March 9, 2015

Jeanine's Story - Why do I want to do this?!


Jeanine’s Story
Retirement is the time in life that we are told that we must plan for, both by saving money and dreaming about it from the time we start working.  You are taught to do well in school so that you can get in to a good college so that you can get a good paying job so that you can retire and have the time (and presumably the money) to do what you want to do.  This is what is considered a normal life as an American…. school, career, then retirement/freedom.  This, to me, makes no sense - and I didn't always feel that way.  I used to think that life was all about possessions, what you have, and what you did.  This is a story about what has caused a drastic change in my outlook on life, one I have not fully shared with anyone, so please bear with me.

Nearly four years ago, I woke up and found it extremely difficult to move - at all.   When I did try to move, I experienced extreme pain in my lower back with pulsations of pain radiating down through my legs.  As scary as it was at the time, I wrote it off as a muscle spasm or pinched nerve.  Maybe I had slept wrong?  Maybe I had moved the wrong way?  I had seen back pain as a child.  My dad had a back injury that afterward he could re-injure doing the most simple tasks.  If he turned the wrong way, that would cause him to stand crooked for a few days. Then it would  seem to magically just go away.  It wasn't until my 20's when a ski accident introduced me to my own form of back pain.

In the years following the ski accident, I experienced intermittent muscle fatigue and low grade back pain - nothing that I couldn't handle.  I would take it easy for a few days and it would go away.  The morning that I woke up four years ago, the pain was extreme (and I was born with a very high tolerance for pain – just ask my mother!).  I was confined to bed for two weeks.  During this time, I did all the things I had always done to try to alleviate the pain.   Therapeutic massage, acupuncture, TENS therapy, chiropractor and exercises, but still no real, long-term relief.  The chiropractor diagnosed me with scoliosis (which I had been treated for previously from a young age) and sciatica.  With their recommendation, I underwent an 18-month program of multiple weekly adjustments and physical therapy.  While this brought me some relief, I would still experience flare-ups of pain and continued to suffer from muscle fatigue and pain in my mid and lower back and hips.

Deciding that this program wasn’t reaching my goals, I changed gears and started a new program. Two months of weekly medical deep tissue massage therapy with daily active isolated stretching - again, I had some relief, but only temporary and far-from-full.  Two months seemed like a reasonable amount of time to figure out if if was going to work or not.  To that end, the search for relief continued.   

Feeling frustrated and ready to give up, I got a recommendation for a back pain treatment center from some close friends of my parents.  Both husband and wife had received successful treatments and couldn't speak highly enough about the practice, so I went in for an exam.  Following a thorough exam,  a new diagnosis was given.  This time, I was told my pain was being caused by one of my legs being shorter than the other (-5mm).   I was required to wear a lift in my shoe and a engage in a weekly program of neurosomatic therapy.  If you have not heard of it, it is not a therapy that is pleasant in any way.  The therapist uses techniques to reposition your muscles by manually lengthening them starting from the ligaments and working their way along the muscles - not lightly.  Basically, the goal of this therapy is to teach your body the way to be properly aligned.   After 18 months of treatments and subsequent healing, I would still go through bouts of extreme muscle fatigue and back pain. 

Nearly a year ago (April 2014), I had what I call “another bad back day” where sitting was intolerable and bending over was impossible.   The following morning, I had a pain spike so extreme that it temporarily paralyzed me.  For the first time since my initial ski accident, I went to an emergency clinic seeking relief in any way possible.  Even though I had documented, genuine pain, with our drug laws, all they did for me was send me home with a strong muscle relaxer that put me to sleep.  Through a combination of some pain killers that I had already been prescribed and a regimen of  muscle relaxers prescribed by the emergency clinic, it allowed me to sleep through the pain on and off for the following two weeks.  During this time, I was forced to wait for a specialist to have availability and for my "insurance" company to give their blessing.

After my appointment and following an MRI, yet another diagnosis was given.  Unlike all of the previous diagnoses, this time there was irrefutable proof of just what was going on - VERY welcome news at that point!  Degenerative Disc Disease in L4-L5 vertebrae and L5-S1 vertebrae along with a torn annulus were the diagnosed conditions.  Unfortunately,  there are not many options in treatment for this disease that don’t involve surgery.  The first were epidural pain blockers that work by essentially “turning off” the pain receptor nerves in the affected discs.  They worked for me for a few months, but again, like all the treatments before, only so much and for a limited time.  On a positive note, I was able to begin a walking program not long after the injections followed by physical therapy a little over a month later.  I was finally starting to feel stronger and lose some of the excess weight I had gained over the years of not being able to exercise and lax dietary habits.  After three months, I had managed to lose 20lbs and was up to walking 2-3 miles per day, 5-6 days a week.  After about three months, the pain blockers began to wear off.  Even though the epidural had worn off, I managed to lose another 5lbs despite having to quit going to physical therapy and quit walking.  Again, I had to wait to get an appointment to see my doctor.  Once I finally did get to see him, all he had to say was "time for another round of injections".  Of course this meant even more time waiting…. waiting on the insurance company to give their approval.  More lost time.  

After attending a wedding in late 2014, I spoke with another friend who knew of a procedure that might be able to help by potentially regrowing and restrengthening the areas of my back that weakened.   The procedure was considered experimental, but many top athletes had undergone similar treatments with high percentages of success.  It also didn't involve steroids or manufactured medicines like epidurals.  Bone marrow was harvested from my hip to make stem cells that were then injected into the areas of my back to rebuild and strengthen the ligaments.  Blood was also drawn in order to make platelet rich plasma, PRP.  PRP was then injected into the affected areas of my back so as to speed up the healing process.

Since the initial treatment, I had a second set of injections of the platelet rich plasma and still undergo weekly manipulation to realign my sacrum and hips.  I also receive pulsed electromagnetic field therapy (PEMF) which helps speed healing by emitting waves of electromagnetic pulses into the muscles and ligaments of my back.  This is a relatively new technology but has already been proven to stimulate repair and regrowth of muscle tissues.  

 By the time I reach that age that society says it is acceptable to retire and do all of those things I've been dreaming about, will I even be able to enjoy any of it?  I think of my parents and the aches and pains that have been increasing as they have aged. I have already lost a lot of time.  Reduced activity over the last 4 years and nearly 8 of the last 10 months, I have not been able to be active at all.  I have stayed home when I wanted to go out and watched from the side while others have played.  I have cheered while I watch others experience life.

I am positive surgery is in my future.  I have avoided it so far for years, but I’m not sure that it's likely that I'll be able to heal this problem without it.  Because of that,  I think about my future a lot.  What will I feel like tomorrow? Next year? In 5-10 years? Is surgery the best option?  What happens if the surgery doesn't work or has complications?  What if surgery makes it worse or physically disables me more than I already am?  I still live with daily pain and am limited to what I can do.  But unlike before this last procedure, I don’t rely on painkillers to get me through most days, so that's positive.   I have just recently started 10 minutes of walking in a physical therapy pool a few days a week (all I can handle so far).  Although it's difficult to stay motivated to keep trying, I refuse to rely on prescription medicines to "band aid" the real problem and will continue to do everything possible to relieve pain as naturally as possible.

Living a nomadic lifestyle is a crazy idea to most.  Who wants to live in an RV when you can live in a nice big house?  I do.  My health problems have encouraged me to prioritize what's important in my life.  Right now, for me, that's concentrating on resting, healing and getting to see and do as much as possible while I am still able to do so.  In order to do that, for me, it also involves being mobile!  I still hope with this last treatment that I will continue to improve.  While I do try to always try to have a positive outlook, over the past few years, it has been a lot more difficult with the constant roller coaster of hope and failure with treatment after treatment.  With each one, it's harder and harder to think about what my retirement will be like...I want (and need) to work and I completely love what I do (despite my complaints from time to time!).  My work allows me to help a lot of people at the same time I help to provide stable employment for other employees - and that's important for me.  But, at the same time, I need to do what is best for me right now.  The best part about it is that I can do all of this from anywhere that I have access to the internet and a phone!  I have been working from home for years, so the transition should be seamless.  Now, home will simply be a matter of where the RV happens to be.  Remember, not all those who wander are lost.  Wish me luck...

2 comments:

  1. Loved your story and your experiences sound so much fun.
    We plan on traveling with a truck and rv. in the spring for a few months. Your comments on everything is great. Do you have any web sites to connect with other new travelers or which camping originization to join to get the discount on the sites and any other info would help us. Were new... I will keep in touch. I have to get a puppy possible a beagle.Not as big as yours.

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    1. Thanks so much for the comment! Congrats on getting on the road. As far as organizations that we are members, we have joined Harvest Hosts, which is a network of farms, orchards, vineyards, breweries, etc, that allow you to stay on their property (usually limited on hookups) for free providing you purchase something from their business. The other one that we are members is Good Sam club. This hasn't given us many discounts with the exception of Camping World purchases. It would probably help more, but since Eric gets discounts being a veteran (the discount for vets is usually more than Good Sam) we don't always see the savings. The traveling is definitely a different experience when you have a dog or dogs to share it with so we agree with your decision to get a dog, too. The only part to consider is that if you aren't taking he/she with you when you visit places, how will he/she stay in the RV? Just some things to consider. Glad you're along for the ride!
      Eric & Jeanine

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