My Stubborn Little Miss: A ONE-derful {Giveaway.}

My Stubborn Little Miss: A ONE-derful {Giveaway.}: Ellie will turn one on March 4. How the heck did that happen? (From the NICU to the swings.) To thank you all for reading this blog ...

You're Mama Don't Dance...

It has been a while since I last posted anything... in the world of Complex Regional Pain Syndrome: No news is good news!  My current treatment is working great!  I am receiving my spinal sympathetic injections every two and a half months like clockwork and still on the daily medication.

I still have extreme pain, usually about 1-2 weeks before my next injection but I will take it.  1-2 weeks in comparison to the hell that was my reality of excruciating  pain everyday is minimal.  I am one of the lucky few in the world of CRPS that have a treatment plan that is controlling their pain so well, I am truly blessed.

But despite a successful treatment plan there are still moments when CRPS robs me of everyday life.  About a week ago, two of my friends were married and my boyfriend, James  and I attended the reception. The day before I received my 8th injection.  My response after the injections are always variable.  This particular one left me with severe back pain and left hip numbness for about 2 days.  Due to the side effects of the injection, we were unable to attend the church ceremony.  But the thing that crushed me the most was not being able to dance the night away.

This was the first wedding ever that I didn't dance 'til the end of the reception.  It was painful to watch my friends party and dance.  I couldn't make it through the reception due to the physical and emotional pain.

But even if You're Mama don't dance... I am still blessed and hopeful with the amount of success we have had managing this horrific medical issue.

Shoes Off

Shoes off was always a rule in my home... I am a neat freak and the last thing I needed was to have my house all messed up by someone's shoes.   I completely respect and appreciate this rule in other people's homes.   I recently attended a party where we had to take our shoes off... my time at the party was minimal, my foot just can't do shoes off on a cold floor.

So now, I am a leave your shoes on kind of girl... CRPS can do that to a person.  I don't even think twice about someone having their shoes on in my home or even myself wearing shoes around my home.  More often than not if you stop by, you will see me with shoes on.

I am now 5 injections in... with no idea how many more will come and how many more will work.  I live my life with minimal pain 2.5 months at a time.  I never know if my next injection is the last.  It has gotten easier.  I have a plan, albeit temporary, I relish the moments of little pain and I don't take that time for granted.  I still have moments of frustration but they are fewer and further between.  But the part I love the most is that few minutes right before the injection... when all I feel is excitement and hope.

And one thing I have learned, is bring slippers to other peoples' homes.

Let the Countdown Begin

Only 2 more days to go until injection day... this will be my 5th injection in less than a year.  The days, hours, and minutes before my injection I feel like a child at Christmas time, eagerly awaiting Santa and the gifts he brings for the New Year.  My gifts are in the form of lidocaine and steroids in an epidural needle and the gentleman that delivers them is far from looking like Santa Claus.  Still those feelings of excitement, nervousness, and hope flood over me and no matter how fast the time passes, it never seems quite fast enough.

As of right now I am going into this injection in "better shape" then I have in the past.  If you gave me the VAS (visual analog scale) I would rate my pain at a 6 to 7/10.  Not bad considering usually at this point I am a definite 8 and escalating to a 9.

It is amazing how much bargaining and negotiating the human brain can do... most people would choose to live life at a 0/10.   I have negotiated and re-negotiated my number time after time.  Depending on what I am doing, how long its been since my last injection I live on a sliding scale of acceptance.  Knowing that I have only a few days left to go, I will take that 6 to 7/10.

So much like the countdown to New Year's when everyone places their hopes and excitement for the New Year in those final moments of the past 5...4...3...2...1... here's hoping that this next injection in combination with the medication brings results, as good as, if not better than the injection before.

November is RSD/CRPS Month! Raise Awareness!

If you surveyed my friends on what my month is, I would imagine you would hear 2 answers. March and October.  March because it is my birth month and October because many of them know, October is Physical Therapy Month.  Now, it's time to add November to the list.  November is RSD/CRPS Month.

This is the month to raise awareness.  Complex Regional Pain Syndrome (AKA Reflex Sympathetic Dystrophy).  Complex Regional Pain Syndrome is a malfunction of the sympathetic nervous system, typically in someone's limbs but can anywhere in the body.  It's estimated that 75,000 people will be diagnosed with CRPS this year in America alone.

Complex Regional Pain Syndrome more often than not is a lifelong battle.  Some lucky few enter remission and an even smaller few stay in remission.  It isn't always an uphill battle... sometimes there are valleys.  I am currently experiencing a valley and am beyond thankful for every minute of it.

It is because of this valley that this blog is later than desired.  I had the best intentions of publishing this at the beginning of November but thanks to a successful response to my new medication and the last spinal injection, I can proudly say, I've been too busy to blog.  My pain has been manageable and has allowed me to keep a hectic schedule and enjoy it.  Many of you probably wouldn't be thankful for a hectic schedule but I am.

This blog is still important even if published at the end of the month.  There is never a bad time to raise awareness, there is never a bad time to educate, to bring attention to or "vent" about this devastating affliction.  But most importantly, this blog is still important and on time even at the end of the month because it brings hope and it is never too late for that.


For further information on Complex Regional Pain Syndrome:
Reflex Sympathetic Dystrophy Syndrome Association

National Institute of Neurological Disorders and Stroke

1, 2, 3, 4... I found myself laying on the floor (sung to Coolio's jam)

This blog was a long time in the making.  The actual act of making a blog is a mere matter of moments, however the decision to have one and put it all out there is another story.  For me, it was an internal debate for months.  I am not always the best about sharing stuff like this and never wanted my blog to be construed as my complaining zone.  I wanted my blog to be an area to share, to inform and relate...

Yesterday, October 6th, I had my fourth lumbar sympathetic injection.  This is where they use an epidural needle and inject the chain of nerves that runs near your spine.  The injection is made up of lidocaine and a steroid.  The hope is by injecting the chain of nerves that the symptoms that I feel in my foot will be reduced.  Going into this injection I felt like a pro.  I know the procedure, the recovery, and the outcomes.  I have lived this three times before.

One thing I have always found intriguing in life is that just when you think you have it all figured out, you get tossed a curve ball.  Most of the time I love the challenge, but this time around I would have settled for the usual.

This injection was the most painful one I have experienced so far.  In order to maximize the injection's effect my MD made the decision to inject two areas as well as injecting closer to the nerve roots.  This resulted in searing and stabbing pain in my low back and left hip and thigh.  Let's just say the nerve roots really like their personal space.  I am now about 20 hours post injection and finally achieving the normal "post injection" pain and discomfort.  It has been a long 20 hours but I am hopeful it was worth it.

So now I am in recovery mode.  I am armed with a comfy couch or my comfy bed, pillows for proper positioning (can't turn off that physical therapist brain), and a DVR full of some of my favorite shows.  What a great excuse to indulge in my guilty pleasures of some pretty crappy TV.

My medications have been changed and we have decided to move the injections as close together as safely possible.  So while I am investigating the latest crime on Law and Order, cracking up to Chelsea Lately and busy Keepin' up with the Kardashians I sure have a lot to think about.

One Year 10.2

It had been one year since my injury.  One year since a simple accident drastically changed my life.  October 2, 2009 I missed a step and fell on the stairs catching my left foot behind me.  After x-rays and a MRI, I remember thinking how thankful I was that it was not broken and was just soft tissue injuries that most likely would not require surgery.   I had no idea that that day started one of the biggest and most frustrating changes in my life.  It was that day, that started my nervous system’s malfunction, CPRS.   (Complex Regional Pain Syndrome)

As I sit here a year later, on the cusp of having my fourth injection to subdue the breath taking pain I experience, I am sad, I am angry and I am frustrated.  Often when we think of someone’s one-year anniversary in medicine the most common is a cancer survivor’s one-year anniversary.  It is a celebratory one-year anniversary, they have survived, they have achieved remission, and they feel better.   My one-year does not feel celebratory.

I have not achieved remission, and I have not gotten better.   My fourth lumbar sympathetic injection is scheduled for Wednesday of this week.  I will have an epidural needle injected into the left side of my back, just along side the spinal column, past the nerve roots and into my sympathetic chain.  It is a painful procedure with many possible side effects and complications.   I experienced one of the side effects when one of my nerve roots was hit during the process and I felt as though someone had branded me in my upper thigh.  My thigh remained numb for 24 hours, thankfully not forever.  The injection is no guarantee; it is a Hail Mary pass for the end zone.  The goal is not a touch down but a reduction in pain and neurological symptoms for some period of time… a week, a month, no one really knows.  Secretly each time I go in, a little part of me hopes forever.  I hope each time I get the injection that this is the one that sends me into remission.  Still hoping.

I take medication daily, the maximum dose.   I know it helps some and I know medication is going to be a life long thing.  Tough pill to swallow for someone who has never liked to take medication, pun intended. 

For now, medication and injections are the best and least invasive plan of care I have.  So every few months I get the welcomed stabbing in the back and I swallow the pills daily.

Ironically, my anniversary date is the same as the international LIVESTRONG Day.  LIVESTRONG Day was chosen to be October 2^nd as it is the day that Lance Armstrong was diagnosed with cancer.   I have been a supporter of LIVESTRONG/Lance Armstrong Foundation from the first year the yellow bracelets hit the world.  I have worn one since 2004.    I am not a cancer survivor but I have learned a much deeper appreciation.   I understand the frustration of treatments that don’t work, procedures that are painful, the hope of remission, and the disappointment of not achieving it.  My diagnosis will not kill me, but it is a lifetime battle.  The likelihood of achieving full remission is small and dwindles with each passing day and procedure.

There are days when I feel pretty good and I can go for a walk or ride my bike, I love those days.  There are days when I can barely get out of bed because the pain of stepping down on the floor is so painful it takes my breath away.  But I wake up everyday, I go to work, I run my errands, I do my house cleaning, I hang out with my friends, and I try to do some type of physical activity daily; even if it is the walking around in the store getting the things I need.  I never thought I would consider shopping cardio… but now shopping is my cardio.  Just like many women have claimed throughout the years.  

I miss the gym, I miss sports, I miss being able to go out with my friends whenever I want to, I miss not having to hold your breath to step down on the floor getting out of bed, I miss my left foot being well.

I sit here today, a year later, I have not gotten better, I have not achieved remission.  I have cried, I have gotten angry, I have grieved, and I have accepted.  I know it is not fair and I know it never will be.  I have allowed myself to have a “day” or a few “days” where it was okay to feel bad for myself or to be angry or sad.    I will still allow myself to have those. This is a lifetime battle everyone needs a “day” or two along the way. 

I sit here a year later having not achieved much.  For an overachiever you can appreciate the frustration that brings.  But I have survived one year.  I have changed my life, I have changed my approach, I have learned to ask for help, I have fought hard and I have made my peace with it.  I sit here a year later looking back on it all and realize I have achieved something.  A year later on this declared day of survivors, I realize, that is exactly what I am.  I am a survivor and I LIVESTRONG.