Training For The Next Big Thing

**Enjoy these pictures from yesterday!


A lot has been going on lately in my little world. Namely, modifications made in treatment plans, doctors, and field education. We have found some great doctor options after doing (on my dad's part) extensive research talking to old colleagues and friends (he was the VP of a large hospital for most of my childhood). We have some connections to Schwartzman and Miller in Philly, so that is one of our options minus the 3+ year wait. Now, it is time to make the appointments for consultations in their offices versus sitting on that papered table. I want that power differential to be minimized, and I plan on going in to interview THEM and see if THEY are willing to partner with me and help me manage this disease. I'm considering outpatient ketamine, but it terrifies me based upon my last experience with the inpatient ketamine. Oh well, I'll do what needs to be done. I was an athlete, we push the boundaries of pain and discomfort, and that is basically how I treat my life with this disease. I am training for my future, so I constantly act as if I am training for some big event, pushing the pain boundaries and treating my body like a temple and the vehicle it is for my victory. Right now, I am getting my body ready for whatever treatment is next by adding extra green juices and tweaking my diet, stretching, and strengthening routines. Over the next pain boundary is something worth pushing for, and that is why I am as mobile as I am today.


My daddy's birthday is today! Happy Birthday to the most wonderful man in the whole wide world!!!! I love you soooooo much!

All The Right Friends In All The Right Places

The day started off in a questionable state, but a change of my fentanyl patch set me up for a productive day, if you can get past the other side effects, which seem like nothing when the pain is FINALLY being somewhat controlled. Fighting with power point (and winning), completing a presentation, juicing with extra spinach, taking a ride with my mom to do some birthday shopping (for me!), eating pomegranate seeds by the fist full, steaming artichokes, snuggling with my pup and burrying my nose in his soft, sweet smelling fur, counting my MANY blessings, and counting them again, writing a letter to god asking him/her/it to heal me each filled my day with small victories. Isn't life just extraordinarily beautiful when your pain is somewhat controlled? The fog lifts, and you can see clearly, even if it is just for a few hours. I'll take it :-)

Tomorrow, I have an appointment with my current pain management doctor for refills and medication adjustments until I find a new, compassionate, empathetic doctor worthy of my time and effort. My dad was the VP of a hospital for most of my childhood, so he has inside men in the medical field, old friends, working on project doctor search for us.

Happy Healing!

Happy Halloween!!!!!!!

Does it get any better than this?!?!?!?!

Pictures Of The One Year Old Woman

Can you believe it???? ONE YEAR OLD! I swear, she looked older the moment she turned one, which was the Tuesday after the party. These photos were taken the day after she turned one.

As for me, I'm still struggling. Struggling, struggling, struggling. But, I'm going about my life, drinking green juices, and keeping the faith. I had a great cry in my father's arms last night, and 10 minutes later, I was happy eating a vegan cookie. Life goes on.

Enjoy!

Happy Healing!

"Doctor Shopping"

Finding the right doctor can be likened to finding that elusive, perfect pair of blue jeans (if they even exist), which can leave you with the same frustrations that spending hours in a dressing room tugging on and off less than perfect denims can elicit. Too short, too long, too loose, too tight, horrible listening skills, big ego, pushing an agenda, etc... you get the point. Just the thought annoys me...

So, how do we find our "perfect fit?" This is what I have learned over time and keep in my tool box:

RESEARCH:

Just as you would do research for an important paper topic, research your potential doctor. Find his (using "his" because most of the pain doctors I come across are male) credentials... where he went to school, who he studied under, who the person he studied under studied under... Look for patient testamonials on the web, look for medical journal articles/research papers he has written, check for malpractice suits. Leave no stone unturned (my dad does this step for me).


KNOW WHAT YOU WANT:

Know what you will and will not stand for. Show up with a list of "must haves," (from personality traits to treatments) and if he will not work with you, move on. There is always another doctor around the next corner. You'll know what is a non-negotiable for you, and stick with it. Just because he is the "doctor" doesn't mean he knows what is best for you. You happen to be the expert on your disease, and if you aren't yet, make yourself the expert.


FOLLOW YOUR INTUITION:

If something doesn't feel right, do not ignore it. Your intuition is a message from the divine, and you wouldn't ignore god if he/she/it was standing infront of you giving you a message, would you?


BRING AN ADVOCATE:

Bring someone you trust with you to take over when you become too emotional or flustered or overwhelmed. Someone who can vouch for you and backup your story, especially if you are a young person in a pain management clinic *cough, cough*


There you go! Good luck!

I have a long day on campus. Ugh!

Happy Healing!

EDIT*** Vegan Dad and Pain Update

EDIT*** Yay! What a lovely surprise! I am featured in How To Cope With Pain's Pain Blog Carnival! Check it out here: http://www.howtocopewithpain.org/blog/1496/pain-blog-carnival-october-2009/

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No, I'm not talking about my man (I wish!!!!)... check out this wonderful, insightful blog post off of crazysexylife.com:

http://crazysexylife.com/2009/vegan-dad/




This pain is testing my strength, stamina, will to move forward, pain tolerance(geeze, tolerance of anything at this point), patience, amongst other important aspects of survival and "thrival" (hey, I like that!) with this illness. My parents are helping me research pain doctors, and I am not going back for a second appointment unless they see and deal with RSD regularly and are willing to prescribe drugs like methadone and sustained release oxycontin. Basically, I am "doctor shopping" until I feel comfortable enough to put myself in the hands of a compassionate, forward thinking, professional. I'm not wasting my time or their time because the RSD clock is obviously ticking.

My man and the little lady just showed up at my front door :-)

Happy Healing!

Have A Little Faith

Beautiful song from this talented lady's new album. You really should hear it, but here are the words in case you can't. Grab a tissue if you wind up downloading it and have RSD. It's a tear-jerker.

FAITH - by Jordin Sparks

Hey there sad eyes, what's on your mind?
Don't look so down, give it some time
You don't have to be so hard on yourself
I know the world can be a brutal place
Please don't let it steal your smile away

'Cause when the sky's the darkest
You can see the stars
And when you fall the hardest
You find how strong you are

Close your eyes, rest awhile
It's been a long, long day
So come on baby-baby, have a little faith

Let those tears fall, you gave it your all
That's all you can do, I'll be here for you
There goes your pride, crushed on the ground
Sometimes it takes a wall to tumble down
For you to see who's gonna stick around

'Cause when the sky’s the darkest
You can see the stars
When you fall the hardest
You find how strong you are

Close your eyes, rest awhile
It's been a long, long, long, day
So come on baby-baby, have a little faith

Sometimes it gets worse before it gets better
And it takes so much to be brave
Sometimes you're afraid it will hurt forever
But when all the lights begin to fade

When the sky’s the darkest
You can see the stars
When you fall the hardest
You find how strong you are

Close your eyes, and rest awhile
It's been a long, long day
So come on baby-baby
Come on baby-baby, have a little faith