Tuesday, February 26, 2013

No News is Good News

So I passed most of my medical testing with flying colors!  In some areas, I'm quite healthy.  Unfortunately, it's the unhealthy areas that give me a whole lot of problems.  But I am pleased to learn I don't have any additional serious diseases or medical problems.  No brain tumors, no lupus, no MS, no diabetes and no RA!

What I do have is what I've had for almost four years now, RSD/CRPS and just for fun, the doctors decided to throw in Fibromyalgia.  Since there are a lot of similarities, it's hard to tell where one ends and the other begins.  So another new medication and another new doctor, but hopefully one step closer to feeling better.  At least I've ruled out what it's not, so I can focus on what it is and what can be done about it.  And it's not fatal, just really painful and annoying!

I have to admit I feel like karma is biting me in the butt right about now, since I used to think Fibromyalgia was a made up, hypochondriac thing.  I used to think that if a person changed their diet (quit eating processed food) and exercised, they would feel better.  Well, I'm already known as the "organicy" eater so it's not that, and even though I'm not doing a whole lot of exercise lately, I have been trying to do some on and off only to feel worse for days after.  I did start changing my perspective of Fibromyalgia when I first got RSD/CRPS.  And now I know just how really real it is!

The only other thing the doctor mentioned yesterday was some degenerative disc disease going on in my neck, which would explain the shoulder/neck pain I've been experiencing.  So it's back to the chiropractor for that and proabably no more roller coasters!

So I guess it's research time, gotta learn all I can about Fibro and how to manage it.  Maybe some of it will help the RSD/CRPS, too.  It's too easy to sit around feeling sorry for yourself when you are in a lot of pain.  But I have to somehow, somewhere find the energy to fight back...I just hope there's still some fight left in me!

Sunday, February 24, 2013

Tom Petty Was Right!

The waiting is the hardest part!  "The Waiting" is the lead single from Tom Petty and the Heartbreakers' album Hard Promises released in 1981.

But I doubt Tom was referring to doctor appointments and test results!  Tomorrow I finally find out the results of several tests.  Upper and lower body EMG (Electromyography) which was quite painful, head and neck MRI, ANSAR test (a painless, non-invasive diagnostic procedure that determines how well a patient’s autonomic nervous system is functioning*), and a ton of blood work.

All these tests were ordered and evaluated by neurologists at The Andrews Institute, a state-of-the-art, world class institute for orthopaedics and sports medicine facility.  Honestly I submitted to these tests to rule out any additional conditions other than RSD/CRPS so I could make the best treatment decisions for my RSD/CRPS going forward.  Now that it's come down to the final hours, I'm worried I could have other issues.  Of course I know it's probably just my mind playing horrible tricks on me.  I've been pretty stressed out the past few days as the appointment has gotten closer.

Of course stress is one of the worse things for RSD/CRPS but since I don't have any valium, it's up to breathing exercises to bring my heart rate down.  And I'm accepting all prayers!

Whatever the news I get tomorrow, I know I will have the best doctors to handle it.  And I know I will be strong enough to get through it because I've gotten farther through RSD/CRPS than I ever thought I would.  I have a strong support group of family and friends.

*From the website: http://www.tlcdiagnostics.com/patients/tests-and-procedures/ansar-testing

Saturday, February 23, 2013

Battle of the Bulge

I've been in a battle with weight as far back as I can remember.  In middle school, I wore a jacket all the time to hide my waistline and we're talking in Georgia...year round!  Do you know hot it gets down here?  And looking back at old photos, the only thing that looks worse than my waistline is me wearing a jacket with the sleeves pushed up in August!

About a year or so ago, I set a goal for myself to have conquered my battle with weight before I turn 40, no more yo-yo dieting.  But now with that date increasingly closing in and the scale barely moving each week, the odds are not in my favor to reach my goal weight by my 40th birthday.  Granted, I've had some major road bumps but there were times I had choices and I made the wrong ones.

The summer before I injured my foot, I was going to do the "Couch to 5k" training workout.  I did the first workout once...just once.  I was pretty good about walking, I just never enjoyed extreme cardio or running.  And then there's food.  I love to eat!  And in this super size world we live in, portion control is easier said than done.  If you don't get a big fat serving at a restaurant, you feel like you've been ripped off, like you're not getting your money's worth.

Now I can't do any high impact exercise because of my foot, even walking is difficult and I'm easily fatigued.  But I've been doing Weight Watchers online and having decent success with it considering I'm not exercising.  We've been making their recipes and they are actually very good!  They are easy to make, simple and fresh ingredients and taste great.  Even Tony likes them, he just eats bigger servings.  And I've gotten a better handle on portion size by measuring everything.  People think, "oh I'll just have one of these, a couple of those.." but it all adds up!

So maybe I will have conquered my battle with weight by May 10th!  Maybe I won't be at my goal weight yet but I'll be on my way and never going back.  I've accepted that Weight Watchers is probably something I am going to need for the rest of my life and if it helps me eat right, keeps my weight under control and keeps me healthier, then it's a great weapon to have in my arsenal.  And I can finally throw that yo-yo away!

Monday, February 18, 2013

Runners World - Records & In their Own

The canopies have been taken down, the record keepers and runners have packed their bags and moved on as life on the beach in February returns to normal.
24 Hour Sand Run
The events of the weekend were a great success!  Around $45,000 was raised for the Special Operations Warrior Foundation and the world record for the longest run in the sand in 24 hours was blown away!  Previously 83.04 miles, Joe Fejes, age 47 from Georgia, took the title with 134 miles. Connie Gardner, age 49 from Ohio, took the women's title with 116 miles.*

I was there when the 24 hour runners made their first lap, but due to the cold and windy conditions, it was time to head inside for the evening.  Sunday at noon I was back out on the beach staffing the aid station as the 24 hour runners made their laps and offering water, snacks and restroom privileges to the 50 mile, 50K and Relay runners as they passed in both directions.  It was a beautiful, sunny day but still pretty chilly (I had on a long sleeve t-shirt, hooded sweatshirt, jacket and gloves).  The runners, of course, were wearing much less and it appeared fluorescent was the color scheme of choice and matching outfits were not encouraged.  I suppose that's how they express themselves with their "flare."  There were also some tourists, either brave or not very smart, who were actually in the water.  How they didn't develop hypothermia is beyond me!

Running has it's own little subculture.  They know the lingo, have specific diets, dress similarly and typically travel in packs.  These runners definitely have some of the most determined will power I've ever seen.  How they push on through pain and extreme exhaustion is amazing.  It makes me think that we humans must all be wired differently, there's no way I could have that kind of will power.  Even before my injury.

I guess that's why not everyone is a runner.  And that's ok, I shouldn't be down on myself or compare myself to other people.  There has to be something that I'm meant to excel at, something that is my "running."  I'm still trying to find my place in the world since my RSD/CRPS diagnosis.  Maybe it's time I get help with that, maybe it's not something I can do on my own.  I have an appointment in April with someone who should be able to help me sort through all the changes this disease has brought on and how to adapt to my new life, I'm looking forward to getting some help because as much as I want to, I cannot do it alone.

Anyway, it was an honor to play a role, albeit a very small one, in such an awesome event!  Already looking forward to next year's Destin 50 and hoping for warmer weather.

*From Northwest Florida Daily News http://www.nwfdailynews.com/

Saturday, February 16, 2013

Fit-Less

 
Son of a Beach Athlete Challenge
Athlete Challenge
It's been an exciting day in Destin as 100's of super fit people descended on our little beach town.  And it's all for a good cause, raising money for the Special Operations Warrior Foundation, "a top-rated nonprofit organization that supports the military's special operations forces and their families through three programs:
- College Scholarships for the surviving children of fallen Special Operations Forces
- Family Services, including educational counseling
- Wounded Special Operations Forces Support"*

There's been several events today:
- Individual 50 mile run (military and civilian categories)
- Individual 50K run (military and civilian categories)
- Relay
- Son of a Beach Athlete Challenge (Elite male/female & Open male/female)Son of a Beach Athlete Challenge
- 24hr Sand Run - 6 runners will attempt to break the individual Official World Record for "Greatest Distance Run on Sand in 24 Hours" as certified by Guinness World Records (83.04 miles*), Camp Gulf just happens to be the turn around point!

I went to a local restaurant and sponsor of the event, The Back Porch, and watched part of the Athlete Challenge.  It was amazing to see how in shape these people were and how far they pushed their bodies.  At first it was inspiring and then it became a little depressing for me since I am very limited in what physical activity I can tolerate.  Yes, it is technically my ankle that's damaged but since my body stays in a constant state of fight-or-flight due to a confused sympathetic nervous system, getting my heart rate up and/or doing strenuous exercise affects me differently than it used to and I have to be very careful.  The last time I did cardio, I thought I was having a heart attack and was wiped out for about a week.  I've decided to take it a lot more easy doing mostly stretching, Pilate's and tai chi.  All I can say is I wish I would've been more fitness conscious when I had the chance.  Now I'm just a spectator and it's easy to get bitter and angry but it's not any body's fault this happened to me.

So I was out there cheering on strangers at the athletic challenge and I will be cheering on the six 24hr Sand Runners.  And if you're out there reading this and you have the opportunity to start an exercise program whether it's joining a regular gym, buying a Beachbody workout video series, participating in a Crossfit program or whatever fitness option you have, go for it!  There's those of us out here that would love to be able to do it and physically can't.

But back to the 24hr Sand Run, it's almost time to get started so I've got to go get bundled up because it's COLD!  We've had great winter weather down here for weeks but of course it decides to get cold this weekend with the low going down to about 35 degrees tonight and that's not including the wind!  I guess the 24hr runners won't mind but the spectators and record keepers will probably be a little chilly!


*From the website Special Operations Warrior Foundation http://www.specialops.org/

Wednesday, February 13, 2013

Beautiful Distraction

Deep down I knew playing video games would pay off someday!  The very thing that has been criticized for generations keeps me sane and allows me to function somewhat normally with a sometimes debilitating mental and physical condition.
RSD/CRPS Cycle of Pain
RSD/CRPS Cycle of Pain
They say chronic pain is all in your head and it is...literally.

"The problem comes when the original injury, the site (in my case the ankle), has healed.  Once the appropriate amount of time has passed, RSD/CRPS says NO!  It still wants to keep sending signals saying the injury is still happening, still going on, and that particular part of the body is still under attack.

This is when the problems really set in.  Many times, depending on what stage the patient is in, there may or may not be outward signs of the disease. But regardless of what is showing on the outside, on the inside, in the brain, the pain cycle is stuck in the firing position where it is continuing to fire repeatedly. The brain believes that the injury is still active, still there so you, the patient, believe you are still hurting because you are feeling the pain! The injury is real to you because the pain is real!"*

Other than the 8 lumbar sympathetic nerve blocks I've had (picture large needle in lower back) and anywhere from 4-6 medications at a time ranging from antidepressants to beta-blockers to narcotics, the only thing that's successful at taking my mind off the pain has been playing video games.  Not TV, movies, work, or even a good book have been able to do what an engaging game of Age of Empires Online has been able to do!  So it's been a great tool for me in coping with non-stop, 24 hour a day pain.

We all know pain hurts but I don't people are fully aware of the mental and psychological implications.  Obviously chronic pain causes depression, but there's also sleep disorders, trouble concentrating, anxiousness and irritability.  And it can all be just so overwhelming and sad.  Then I sit down and get involved in a game, and at least for a little while I can block most of it out, focusing on the game's objective instead of how drastically my life has changed and how bleak my future looks.

So until there's a cure or a treatment that puts my RSD/CRPS into remission, don't think it's weird if I prefer to sit inside on a beautiful day and play a video game.

*From the website American RSDHope, article "CYCLE OF PAIN OF CRPS OR MECHANISM OF RSD" http://www.rsdhope.org/crps-cycle-of-pain-diagram.html

Tuesday, February 12, 2013

Ready To Party!

avaSKIN
I was so excited when my Ava Anderson Non Toxic consultant's kit arrived...now I'm ready for a party!  The kit includes enough products to demonstrate their quality to others while allowing me to try a variety of items! 

There's just one problem, being the most unsalesmanlike person in the world, I've yet to book a single party.  Living far away from my family and friends doesn't help.  And dealing with a particularly painful CRPS/RSD week has definitely thrown me off my game, because unless you've lived with chronic pain, there's no way you could understand how exhausting, distracting and depressing it can be.  Just my luck that I take on a new business venture and my foot/leg pain flares up to new heights.  I guess I should look at it as a challenge...


6 Piece Travel Size Kit
My spirits were lifted today when I received a voice mail from Kim Anderson, Founder and President of the company!  She called to welcome me to the company and congratulate me on an amazing start to getting something going on in Florida!  So a special shout out and thanks to the handful of friends who have helped make that happen, giving me something to build on and confidence in myself and the product.

Next step is to have my first home party, guess I better get to filling out those invitations!

Sunday, February 10, 2013

Pay for it now or later

Every time I go to the grocery store I'm painfully reminded at the cash register how expensive eating healthy can be.  There aren't many coupons for produce, organic or non-GMO products.  Then factor in non-toxic personal care and household cleaning products and the dollar signs just keep adding up.

On the other hand, equally expensive are rising medical insurance, doctor visits and medication costs.  We have what is considered pretty good medical insurance with a reputable company through a medium to large employer, however, our monthly contribution is extremely costly and co-pays to specialists (all my doctors are "specialists") are $60 a visit.  Most medications are reasonable but a few of mine are new and without generic substitutes so they can get pretty pricey.  It's bad enough to have CRPS/RSD, I sure don't want to develop any other health issues!

But my CRPS/RSD aside, I am trying to eat healthy and use safer products in an effort to avoid more medical complications down the road.  As I've said before, yes we're all going to die of something but it's the quality of life as I age that I'm worried about.  Heart disease, diabetes, dementia to name a few, run in my family.  My diabetic grandfather was only 68 when he died of a heart attack, an uncle only 66 when lung cancer took him and my grandmother wasn't in her right mind for awhile before she died.

Then sometimes I wonder if it's worth it.  There are so many outside environmental factors we can't control, why am I wasting money on organic apples?  Then I taste one or an organic carrot or grapes and I can taste a difference!  Then I realize with every purchase we cast our vote.  Do we want a world of nothing but frozen pizzas?  If so, then let's load up our grocery carts and cast our vote for processed, artery-clogging food.  Or do we want to preserve a world where small-time farmers still exist, still bring their goods to local farmer's markets and local grocery stores?  I want small-time farmers to be around for future generations.  We need to take a stand!  I was pleased to read on Facebook that a new Kroger near my hometown has a lot of organic products.  We need to vote at the cash register and talk to Produce and Store Managers about stocking quality items.

And I also want to cast my vote for companies that spend research time and money to make safe products, instead of seeing how much cheaper and faster they can produce things without caring what affect it has on consumers or the environment.

Yes, these things cost more money but I like to think what we save in the long run is priceless.

Wednesday, February 6, 2013

Laissez les bons temps rouler

Let the good times roll!
Fairhope Mardi Gras parade 2011
The king cakes and moonpies are at the grocery stores.  Fast food commercials focus on their fish sandwiches.  The red and green decorations of Christmas have been replaced with purple, gold and green.  It's Mardi Gras season on the Gulf Coast!

Unfortunately the farther east from New Orleans you travel, the less festive it becomes.  It nearly slipped by this year unnoticed.

There was no getting away from it a couple of years ago while we were staying in the Mississippi/Alabama area south of I-10.  The first parade we attended was in Ocean Springs, MS and it was a lot of fun.  We thought the floats were great, the "throws" were good and the turnout was big.  But with each parade it got better and better until the one in Ocean Springs wasn't near as cool as originally thought.  Mobile, AL was probably the biggest and Fairhope was the coolest because it comes by twice but they were all fun, family-oriented events.

For some reason I, like many people, associate Mardi Gras parades with drunken exhibitions of depravity.  That may be true in New Orleans, but it was not the case in Ocean Springs, Mobile, Dalphne, Fairhope or Pensacola.  It was locals and tourists, young and old, rich and poor coming together to celebrate the culture and history of the area, tradition and community.  Yes, I'm sure it has it's roots in some horrible, evil pagan something or other but that's not what it was like to be a part of it.

There were elaborately decorated floats, items called "throws" consisting of everything from the stereotypical beads, to stuffed animals, coins, cups, frisbees, moonpies, and the less predictible but tasty ice cream sandwiches given out by costumed and most definitely masked members of "krewes."  It's the krewe members who organize the parades, decorate the floats and have extravagant formal balls as well (the dinner and dancing kind).  I would love to be able to join a krewe and throw from a float but it's not that easy and it certainly isn't cheap!  You have to know someone, most krewes are very private and the only way to get in is to be sponsored.  And then you're talking annual dues of around $1200.  Guess that's one bucket list item I won't be fulfilling anytime soon.

And then there's the regional issue.  While there are a few Mardi Gras events scheduled in Destin, they seem to be more corporately sponsored gatherings.  There's not much of a "historic downtown Destin" so it just wouldn't be the same as it is in the before mentioned cities.  Luckily I've collected enough beads from previous festivities to last a lifetime and if I'm that desperate, I'll go buy a moonpie, chocolate of course the other flavors taste like chemicals.

Monday, February 4, 2013

Super Hog

The big stories this weekend were Groundhog Day and the Super Bowl.  These events in the past have had me on the edge of my seat with excitement awaiting the individual outcomes with nervous anticipation.  This year I couldn't have cared less about either one.

For about 11 years, I suffered through seemingly endless northern Ohio winters with weeks where gray skies chased the sunshine away and sometimes months would go by without a single blade of grass to be seen, buried beneath feet of cold snow.  It was during those years I held out hope that Punxsutawney Phil would not see his shadow and winter would magically disappear and daffodils would miraculously bloom in mid-February like they do in the south.  But now I live where flowers (at least the hardier varieties) bloom all year and winter consists of a few pesky days below 40 degrees.  I no longer have to rely on a large rodent's post-hibernation outing's alignment with the sun to know when I can wear shorts and flip flops...I'm already wearing them.

And let's not forget while I used to find these furry little creatures somewhat cute and cuddly and the whole Groundhog Day an amusing bit of Americana, it was a groundhog hole that caused my broken ankle.  Let's just say I'm a little bitter and tend to hold a grudge.  Maybe if it had just been the broken ankle, it healed and everything was fine I could learn to forgive the groundhogs.  But that's not what happened and so Groundhog Day is just another reminder of what this condition/issue/disease or whatever it is has taken from me.  But hey, at least it's #2 of the list of 5 Crazy Diseases!

Then there's the Super Bowl.  I was so totally uninterested, I didn't even watch it for the commercials.  And I'm a football fan.  But once the Steelers were out and then the Falcons, well I'll just wait till fall.

Friday, February 1, 2013

And I do my little turn on the catwalk

I'm gonna be a supermodel!  Ok, stop laughing.  We all know I'll never be a supermodel but my doctor did put me on a different medication referred to by the blog, "Crazy Meds: The Good, The Bad, & The Funny:" as "Turning you into the stereotype of a supermodel: thin and stupid" even going so far as to say it makes you "dumber than a box of rocks."

So I'm going to lose weight!  I'm choosing to focus on the positive here.  Let's forget the increased dumbening and concentrate on being ready for swimsuit season, I live on the beach for crying out loud!  But seriously, I've already lost so many IQ points and brain cells since contracting CRPS/RSD, what's a few more if I can get pain relief (and lose weight).  Because that's the reason he prescribed this medication.  In the never ending search of something that will ease the pain.  It's my third try in the world of anti-seizure medications (and no, I've never had a seizure in my life) and hopefully it will be the winner.  If not he's has several other invasive torture-type treatments I can try from lidocaine infusions to the spinal cord stimulator.  But in the tradition of Scarlett O'Hara, I'll think about those tomorrow!  Or maybe I'll be too dumb to remember...