Bucket List Additions & Can I make a Wish?

I remembered a few more Bucket List items:

14.  Attend the Tampa Florida RV Super Show (sent in registration for January 2014)

15.  Attend Dragon Con in Atlanta, GA

16.  Attend Comic Con in San Diego, CA

17.  Attend Rose Parade in Pasadena, CA

Also, I was thinking about the terminally ill children that get to make a wish through Make-A-Wish^®.  Is there something like that for adults?  What is the criteria for the illness?  Does it have to be an illness that kills you or is incurable good enough?  If by chance I could qualify for something like that, then that totally changes my bucket list into a wish list!

Be on the sidelines with my favorite team during a regular season football game?  Be a guest star on a few of my favorite TV shows, one of which is filmed right around the corner from my hometown?  Sing backup on stage for a few of my favorite singers?  Isn't it about time something good comes from this horrible invisible disease that has ruined the majority of my life??

I in no way mean to disrespect Make-A-Wish^®, I think what they do is awesome.  Just wondering is all...

Bucket List

Bucket List.  It's not just a movie, it is a written intent to engage in fun and exciting behavior.  I've always kept a mental list in my head but since my memory isn't what it used to be, I figure now is a good time to put it down in writing and put it somewhere that everyone can see.  Maybe someone can help me meet my goals or maybe someone might want to join in, either way, here they are for all to see.  Everyone should have a bucket list.  Not only does it give you something to look forward to but once an item is completed, you get a sense of accomplishment...something I rarely achieve or experience.  So to start off on a positive note, I will list everything, including the items that were on my mental list that I have partially or already completed.

1.   Attend a MLB game - done, Atlanta Braves & Cleveland Indians
2.   Attend a NFL game - done, Cleveland Browns & Pittsburgh Steelers
3.   Attend a NBA game - done, Cleveland Cavaliers
4.   Attend a NHL game
5.   Attend a college football game - done, Michigan State University in East Lansing, MI
6.   Attend a NASCAR race - partially complete; camped, went to infield to Fastenal hospitality tent and pit row, Lynyrd Skynyrd concert on track and driver introduction but race was rained out
7.   Become a Florida resident - done, obtained Florida drivers license & voter registration
8.   Go deep sea fishing - done, thanks to great friends who let us tag along!
9.   Ride on a Mardi Gras float and throw beads
10. Visit every Margaritaville in the continental United States with Kisa Travis Stahl - partially complete; Pensacola Beach Margaritaville Hotel & Panama City Margaritaville so far...
11. Airboat ride
12. Live in the Florida Keys
13. Paddleboard
14.

This list is a work in progress.  I am open to suggestions but remember they are just suggestions!  Also, please be mindful of my physical limitations.  Although if I am going to do anything physically demanding, I better do it sooner rather than later because my condition isn't getting any better.  But I still can't do anything that would involve extended use of my ankle.

Time Flies

Time flies when you're having fun...it also apparently flies when you're not!  That's not to say this summer has been totally awful.  I have had some fun, but it has been a rough summer health wise.

In my role of human guinea pig, I've tried several different combinations of medications, an invasive treatment and a week of self monitored pain medication detox.  There was the one that made me sleep all the time, get home from work, eat dinner and be in bed by 5:30 - 6pm.  Then there was the one that kept me up till 2am.  But they both made it hard to get up in the morning, go figure.  The invasive treatment consisted of a regular nerve block with a twist.  Instead of just injecting drugs with a giant needle, under x-ray, in my back, in front of my spine ... they ran a little radio frequency wand through the needle and burnt some nerves.  So the next week, in order to judge the success of the procedure, I began stepping down my pain medication until I wasn't taking it at all.  All by myself with no Celebrity Rehab facility!  Oh what a horrible feeling!!

After my system was clear of the pain medication, it was obvious that not only did the procedure not stop the pain in my right foot/ankle/leg, but the pain had spread to my lower abdomen and back.  My left foot/ankle/leg has also begun small pulses of the burning, electric shock, sandblasting, jellyfish stinging, caught on fire, whatever kind of sensation you can understand that my right side endures.  So back to the doctor and back to the pain medication.

My pain doctor is wonderful.  He's the only person I know in real life (I have lots of online friends who understand) other than my husband that truly understands the kind of pain I'm in, how it affects my body and just how bad my condition is.  So we are trying a new formulation of an old anti-seizure medication that I couldn't tolerate.  Apparently they fixed whatever it was that caused the adverse reaction.  I also see a psychiatrist.  He's not so much the talking kind of shrink but he manages all my other medications.  I used to have an internal medicine doctor do it, but it was clear he had no idea what he was doing!  So once a month I go see my shrink and we see how my meds are treating me.  After the two that made me sleep then kept me up, I suggested a third and he agreed.  It's nice to feel like you have a say in your own treatment!  So far, I think this one is going to work out pretty good. 

I've done a lot of research on my condition and learned a lot about the central nervous system and autonomic nervous system functions.  Especially since I've got a lot of things going haywire like panic attacks, digestive system and heart rate.  At this point it would appear I have what they refer to as "full body CRPS/RSD" because it's affecting my organs.  Just think of your "fight or flight" response when you're almost in a car accident, almost fall or going over the first hill of a roller coaster, the adrenaline rush you get and your heart rate increases, your palms get sweaty, etc.  Imagine if that feeling happened to you without provocation several times a day, every day and night, forever.  Welcome to my world.

So I carry on, sticking to the medication route (what I always wanted to avoid) and staying away from the invasive route for awhile (no spinal cord stimulator implants thank you).  Trying to eat healthy, taking quality vitamins designed for my blood type (shameless plug for Right 4 Your Type), wishing I could exercise but thankful I can at least make it to work and back.

Just like Riding a Bike

So it's been awhile since I've posted.  It's one of those things that compounds, days turn into weeks and weeks turn into months.  I'm always waiting for that great, amazing thing to post about but alas, it never comes.

While the past couple of months haven't been completely event free, there hasn't been any earth shattering news.  This will be my "getting my feet wet" again post and hopefully I can fill in the gaps after this one.

In health news, I'm pretty much the same.  No energy and lots of pain.  My medications have been wrangled down to the bare minimum I can handle.  Sitting here right now, my right foot feels like it's on fire.

Regarding my business venture as an Ava Anderson consultant, it's only doing as well as what I'm putting into it...so not that great.  Which is ok with me right now.  A lot of people are not ready to embrace the non-toxic personal care & cleaning product lifestyle but I'm working them slowing and will here for them when they are ready.  The dangers are getting more and more mainstream press.  And Tony and I are really enjoying the products.  Everything we've used has exceeded our expectations!  As I get more comfortable with the products and build confidence, maybe things will take off.  If not, I get a discount on great products and am able to help out those who are ready to reduce their and their family's toxic burden.

Then there's the "Right 4 Your Type" products that are based on your blood type.  The Unibars (which are great for all blood types) are my favorite and we always keep both flavors in stock.  And I love the Type A (Tony & my type) vitamins.  I also take extra B12, Flax seed Oil (for my 3-6-9 Omegas) and one for joints/mobility.  They also sell the blood type kits if you don't know your blood type and the books that go along with it.  Some people may not think much of the program but several years ago, Tony & I followed it to the letter and his allergies went away and I couldn't STOP losing weight.  But the diet plan is difficult to follow because it's restrictive but when I did it, I never felt so good.  The diet plan consists of "Beneficial" foods, "Neutral" foods, and "Avoids."  To this day, I still try to follow this when possible or when my will power allows!

And then there's the RV park.  Work is still going good here and it's a great bunch of folks to work with!  I even got to be in the Memorial Day parade!  I just wish I had more energy to hang out and interact with my coworkers off the clock more.

Well, that's all for now.  Let's not be strangers this time!

Doctors come and Doctors go

Today I gained a new doctor and lost another.  This morning I got a phone call from the neurology group that the doctor, who only 3 weeks ago, excitedly told me that she thought she could help me, that she did not believe I had fibromyalgia and she was confident she could make a difference for the better.  The phone call informed me that she was no longer with the neurology group and I needed to reschedule with the physician's assistant so I could be evaluated and assigned to a different doctor.  Caught off guard by this development, I rescheduled but later decided that I am going to call back and cancel as I was not impressed with the other 2 doctors in the group and I honestly think it's time to scale back on both doctors and medications.

Today was finally the day to visit the psychiatrist, an appointment I made about 6 months ago.  An appointment that was almost cancelled 2 weeks ago because the insurance company hasn't paid the doctor since January.  In January, Blue Cross Blue Shield of Florida sold their mental health portion to a company called New Directions who has been dragging their feet and making excuses on paying claims.  So the doctor's office called 2 weeks ago and wanted to either cancel my appointment or reschedule me for August, this was after already waiting 6 months!  All my doctors recommended that I see a psychiatrist, and honestly I wanted him to review my medications.  So after calling my husband Tony in tears, he spent the day on the phone and even spoke to one of the big guys and they assured us they'd pay.  As of today, they still haven't paid other claims but hopefully they will pay mine.  If not, they'll be getting an ear full from Tony again!

Anyway, the meeting with the psychiatrist didn't go the way I imagined.  There wasn't a whole lot of talking about my feelings.  He was shocked I was functioning at all based on all the medications I'm taking.  And furthermore, he said several of my medications were at such low doses that it was pretty much a waste to be taking them.  So the plan we came up with was to stop taking 3 medications right off the bat tonight, start weaning myself off another one slowly and replace them with another stronger medication used to treat chronic nerve, muscle and joint pain.  So he can pretty much manage all my medications except the pain meds.

And he's located a lot closer than my other doctors which is good, I'm getting tired of driving an hour and a half one way for appointments.  I guess I should go ahead and find other doctors close by.  I'll still go back to the ankle surgeon if and when that comes up again but I guess I'll wait another year before checking on it.  That's the problem with chronic pain in my ankle.  I constantly worry is it nerve pain or is there something wrong with the bone again?  I can't keep having MRIs every few months but I can't totally ignore it either.

So the conventional treatment saga continues...I know I can't continue taking all these medications long term so I need to get busy exploring alternative treatments and I need everybody's prayers.  I just want this pain nightmare to end!

Treatment Progress Report

Ok so obviously, conventional treatment is much easier and less painful than alternative treatment!  As much as I hate them, taking pills versus going to a yoga class or buying expensive supplements (that may or may not work) is much simpler.

So far I've taken 3 yoga classes, was supposed to be 4 but I didn't make it yesterday because I was in way too much pain especially my foot.  The pain started Friday when thunderstorms moved through the area and we had a 20 degree temperature drop.  It was a different type of pain in a different location on the bottom of my foot.  Usually the pain is sharp, burning, electric shock and/or like getting sand blasted (try walking on the beach on a super windy day!).  However this is a deep aching pain like when I get one of those muscle spasm cramp things that usually last 10-20 seconds and my toes curl on their own and all I can do is cry or scream till it's over!  Anyway I thought it would quit hurting when the storms moved out but it hasn't.

This week I finally (after waiting 6 months) get to go see a shrink at the recommendation of my internal medicine doctor, pain management doctor and neurologist.  I guess it's typical with chronic pain patients.  Not sure what to expect or how it's going to help but I'm trying to keep an open mind.

Also this week, I am hoping to try a tai chi class.  I took a 6 week class at the recreation center when I lived in Ohio and it really did help relieve stress and I enjoyed the class.  It's been hard to find one around here but a couple of martial arts studios offer it once a week, one on Tuesday night toward Panama City and one on Saturday afternoon toward Destin.  Once tourist season begins in a month, heading toward Destin will take extra long so I'm going to try the one on 30A toward Panama City.

Yesterday I finally reordered vitamins and supplements from the Right 4 Your Type site.  I know I have felt worse since running out of them but between medical costs and me missing work due to doctor appointments or feeling bad, I haven't had the funding to purchase them.  Thanks to my husband for buying them for me.  And also ordered powdered vitamin C to try "The High Dose Oral Vitamin C Protocol for Cancer (and Nearly Every Other Ailment)" even though I don't have cancer, the guy who wrote the blog says it can help with lots of other illnesses.  It's a great blog, "Chris Beat Cancer: A Chemo-Free Survivor's Health Blog" Nutrition & Natural Cancer Therapies, No Chemo.  I found him from a Facebook page called "Hard core nutrition for the prevention of cancer" after they posted that Chris was on the Ricki Lake show.

So I'm slowing working up to alternative treatments.  I don't see acupuncture in my future since the majority of my pain feels like thousands of pin (or needle) pricks.  Just don't think I can mentally or physically handle it!  I need to work on meditation and relaxation since it's very hard for me to quiet my mind and not be worried or anxious.  And that also means working on deep breathing or breathing in general since I seem to hold my breath a lot when I get anxious or when the pain is bad, not sure why.

In the meantime, I have a ton of medications and despite them I'm still in pain and still having anxiety or panic attacks and muscle tightness.  One thing they do help with is insomnia and as a lifelong insomniac, that's a good thing! 

Alternative vs Conventional Treatment

Ok, I'll be honest...I'm still not comfortable with my fibromyalgia diagnosis.  I don't doubt the diagnosis itself, actually the more I read and find out about it, the more it makes sense and fits what I've been experiencing.  But I'm just not "cool" with it.  I mean, isn't one weird neurological disorder enough?  Apparently not.

So I'm cruising along on my conventional, western medical treatment.  Most of my medication for RSD/CRPS translates over to fibro anyway.  But now it's time to start exploring all the fun (and insurance uncovered) alternative treatments.  Well, I guess the chiropractor is somewhat covered by insurance.  Although he was better covered last year.  Apparently as New Year's revelers celebrated the countdown to midnight and the change from 2012 to 2013, my insurance company was salivating and wringing their greedy little fists as my chiropractic visits when from covered with a $60 co-pay to not covered until my deductible is met and then the $60 co-pay.  The joke is on them, I have so may medical problems, I've probably met my deductible by now!

So tomorrow I get my back cracked and while it's probably not even related to fibro, it should help with the neck and shoulder pain.  I have 3 protruding discs and mild scoliosis which require occasional adjustments, providing sounds that resemble handfuls of snap and pop fireworks, stepping on a bunch of twigs or twisting bubble wrap.

Then Friday I'm scheduled for a massage.  Something I used to really enjoy but lately has become painful.  That's part of the fibro, I'm told.  But I still think it has it's benefits and I'm doing it on a Friday so I don't have to work the next day if it kicks my butt.  I do, however, have to drag myself out of bed Saturday morning for yoga class.  I finally got the guts to sign up.  Bought a Groupon deal for 5 discounted classes for "gentle yoga" and just hoping it lives up to it's name!  I've tried a few yoga videos but never quite gotten the hang of it.  The angles put an awkward strain on my bad ankle.  But now there's more at stake than just my ankle.

Should be an interesting next few days.  Probably going to be overdoing it.  But I can't sit here feeling sorry for myself forever.  Hopefully these things will help.  Next I will add in either pilates classes or tai chi.  I bought a Groupon deal for 5 discounted pilates classes and the studio also offers pilates and yoga classes on Stand Up Paddle boards (yeah right!).  Then there are 2 facilities locally that offer tai chi classes and the first class is free, so I need to work up the courage to try those as well.  Tai chi is great for breathing and relaxation.  I'll never forget watching folks doing it in San Fransisco on City Hall's lawn and in Golden Gate park.  I'd love to be able to do it on the beach someday.

Then there are the alternative treatments everyone and their sister has to offer.  From natural supplements, juice drinks and hocus pocus .  I know everyone means well and if I had unlimited resources, time and energy maybe I could try them all but right now I need time and space to figure out what's best for me.  If I did have the funding, I would be back on my Right 4 Your Type supplements and vitamins because I've never felt better than when I was taking them, I believe in them and the science behind them and they are great products.  Unfortunately funding is low and I can't afford them right now, but as soon as I can, I will be back on them.  I also follow the blood type diet when I can, as much as I can.  Now that I've been diagnosed with fibro, I really need to get back to following it more strictly.  But I also need to reduce stress so I'm taking baby steps right now and just doing the best I can.

Other alternative treatments include:

• acupuncture - won't be trying due to nerve related pain, don't think needles are a good idea
• meditation - I have a hard time sitting still and quieting my mind
• relaxation training - see above, to be able to do this I will need extensive training since this is not an easy thing for me
• counseling - appointment scheduled with former neurologist turned psychiatrist April 22nd
• supplements - see above regarding Right 4 Your Type
• hypnosis - I'm a skeptic that this is even a thing
• stretching - sounds like pilates and yoga will cover that
• diet modification - I've been working on this one for years anyway, cut way back on processed foods, no nitrates or nitrites, rarely eat pork or beef, rarely dine out, eat mostly organic, incorporate more fruits and veggies into diet, very little sugar or gluten
• biofeedback - still not sure what it is

In the meantime, I continue to take one day at a time and take my medications.  I go back to my doctors April 8th - internal medicine, neurologist and pain management.  Try to find joy in the little things, like my sweet dogs Dodie, Heidi and Margarita.  Catch a glimpse of the Gulf of Mexico every now and then.  Make someone smile even while I'm silently suffering in pain.  Keep up with friends and family on Facebook, sharing in their happiness and sorrows.  Offering a prayer or comforting word.  And hope everyday I wake up that maybe, just maybe I'll feel good, not looking for great, just good!

Life's a Beach

I'm not sure where the saying came from, "Life's a Beach" but as I sat there Sunday afternoon, I realized...life truly is metaphorically a beach.

When everything is great and sunny, there are plenty of people around, when the storms roll in and it's cold or rainy, no one can be found.  Some days the water is calm and it's smooth sailing, other days the waves are crashing and you get tossed around, the double red flags are out and the rip current could take your life.

Some people build beautiful sculptures in the sand and some of us just end up with sand in our crack!  For some it is a place to rest while others are busying themselves with activities - flying kites, throwing a football, playing volleyball or going for a jog.

Generations are represented from the new baby to grandma. Families gather in matching khakis for their annual photo. Folks line up in the evening to get the perfect sunset picture.  The beach is probably one of the most photographed backgrounds.

The wind and the weather change the shape of the beach over the years, the big storms more drastically, just as we are changed by our experiences - both good and bad.  Once in awhile the beach is covered with seaweed, something they used to haul away because it detracts from the beauty of the beach but plays an important part in preserving it from erosion, much like some of the ugliness that happens in our lives, building us up for something we can't perceive in the future.

Didn't Your Mama Tell You?

Didn't your Mama tell you, if you don't have anything nice to say, don't say anything at all?  Well, that's why I haven't posted in awhile.  As much as I'm sure folks get tired of hearing (reading about) me complaining about feeling bad, I get tired of talking (typing) about it!

But when that's the running headline in your life, it's hard to talk about anything else.  Especially when your health prevents you from getting out and experiencing fun and interesting things to post about.  Not a whole lot happens inside.  I did catch a glimpse of the St. Patrick's Day dog parade last weekend as it passed by with both dogs and owners adorned in festive attire.

So I'm still trying to adjust to my new additional diagnose of fibromyalgia.  I bought a book about it.  I joined a few online groups.  Several sources recommend "gentle" exercise.  Unfortunately, I'm not quite sure what that is apparently because everything I've tried from leisurely walking, stretching and bicycling has knocked me on my butt for days.  Maybe I need to read more of that book I bought.

Hopefully the warmer weather will help me be able to get out a little more.  There's so many cool things going on in the area.  I'm going to the Seaside Farmer's Market on Saturday and I can't back out because I placed an order from a local vendor.  I went there a few weeks ago with a couple of friends and came across Hale & Hearty, Wholesome Prepared Foods To Go.  Seaside is an awesome little town.  A "master-planned" community and the location for filming of the Jim Carrey movie The Truman Show.  Unfortunately, the weather forecast isn't looking favorable with a good chance of thunderstorms but at least I won't have to worry about cooking dinner!

Spring Breaks down in Panama

Ah, spring break.  I'm wearing jeans, a sleeveless sweater and a short sleeve  shirt and it's a little chilly on the golf cart with a brisk wind and only 66 degrees.  That does not, however, damper the spirits of the spring breakers, bless their hearts, determined to walk around in bikinis (the girls) and swim trunks (the guys) all day and well into the evening.

Although Destin is more of a family destination, there are still lots of partiers on hand and earlier in the week 32 underage drinkers were arrested just down the street from here.  It seems a lot more of the paryting has migrated over from Panama City, a location famous for it's rowdy spring break.  A short drive down Scenic 98 and the view is no longer of just the gulf of Mexico but of hundreds of kids replacing what just a few short weeks ago was only snowbirds.

House Party...busted!

It's an interesting time of year as the youngsters converge on the remaining snowbirds.  Signs announcing the early bird specials are replaced with band schedules.  Here at the campground, potlucks are replaced with hot dog cookouts and needlepoint for children's crafts.  Then there's those of us who don't really fit in any of those categories.  I'm not a college student or middle school child on school break, not a retired snowbird and not a family on vacation.  I guess we're the new hybrid local.

After a short winter, the traffic jams are back but it's good to see folks out enjoying themselves and spending their vacation dollars in this beautiful area.  Hopefully there will be a short lull just before summer, then we'll really get busy!  This is just the dress rehearsal!

Reboot

Ok so finding out I have fibromyalgia really knocked me for a loop and I haven't posted for awhile.  I guess I've been in shock or mourning or denial, not sure which and maybe a combination of all.  It's been hard enough dealing with RSD/CRPS, a weird neurological disorder but now I have another one?  People probably just think I'm crazy.  But the pain is very real and it sucks big time.

So hopefully in a couple more days I'll have moved past the paralyzing phase and can get back to blogging and other things.  And I've got to start working on different treatment options other than medications.  I have a couple of groupons (discount coupons) for yoga and pilates as well as a couple of free trial tai chi classes.  We'll see what helps and what makes it worse.  Too bad insurance doesn't cover things like that.  I'm hoping warmer weather will help and there's quite a few 70 degree days in the 10 day forecast!

Much like a computer that gets stuck or locked up and won't move forward, you have to unplug it or turn it off and reboot it to get it going again.  I've become stuck, locked up and unable to move forward so it's time for me to reboot myself.

Thanks for all the prayers, thoughts, well wishes, advice and support during this difficult time.

I Feel Great!

I really do...most days between 10:30-10:45am for about 15 to 20 minutes!

Hey, that's progress!  I'm thankful for any amount of time I can get that I feel at least a little bit normal.  I'm guessing it has something to do with my current combination of medications.  And the timing a result of my 9am dosage.

The worst part of my day is when I first get up, especially on work days or any day I have to be up before 9am.  Getting up at 6:30-7am is terrible, showering is exhausting and trying to blow dry my hair without stopping and laying down every few seconds is annoying.  I would probably have fallen and broken something (hip, neck) in the shower if my husband Tony hadn't been kind and clever enough to build a custom shower seat!  I think one of the reasons I have such a hard time getting up in the mornings is due to all the medications I take at night to sleep.  Vicious cycle but I'm a life long insomniac and the lesser of the two evils is being groggy in the morning, trust me!

Luckily my commute to work consists of a short walk, I certainly don't think I'd be up to fighting traffic in my early morning, pre-medicated state.  I wait till 9am to take my medication so that the rest of my day goes smoothly and my afternoon dose takes me into the evening.  And it starts all over again...

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!

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

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!

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/

Fit-Less

 

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)
- 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/

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

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

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!

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.

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.

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.

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...

You Go Girl

Ava was just 14 when she realized the issue of chemicals in personal care products and their potentially hazardous health effects.  Now 5 years later, having just celebrated her 19th birthday yesterday, her vision for providing the very best products without harmful chemicals is being realized and taking America by storm.

I decided to become an Ava Anderson Non-Toxic consultant because I was having difficulty finding safe and effective products.  I also want to let all my friends and family know the potential risks some products contain and offer an alternative.  It felt like a really good company to represent and honestly if I can make a little money doing it or just save some money on the products I use, then that's great, too!

Since being diagnosed with CRPS/RSD, I can no longer handle the stress and cognitive requirements of my previous employment as a mortgage underwriter.  CRPS/RSD directly affects memory and heightens stress.  It's my "flight or fight" nerve that's going haywire so even the slightest stress can send me into a full blown panic attack.  Then there's the medication, all of which may cause dizziness or drowsiness, interruption in thought and speech and who knows what else?!

I've been fortunate enough to find a great job in a beautiful location.  I enjoy working at an RV Resort on the beach and feel for the most part, I do a good job.  The stress is low but so is the pay.  So I was hoping to launch my Ava business on the side to help offset some of my medical expenses and reduce financial stress since any stress for me is bad.

My consultant kit is due to arrive tomorrow and I'm excited to get started.  I've never been good at sales but believe I can make this work because it's a good product and something I'm passionate about.  I'm slowly letting my family and friends know about it and I'm going to go out into my community and spread the word!  So hold on for a crazy ride because this is uncharted territory for me!

Be sure to check out my Ava Anderson Non-Toxic website for more information on the girl behind the name.

More Good News

Today was doctor day.  I remember a time in my life where going to the doctor was a once a year or less event.  Now it's at least once a month to several different specialists.  January was a busy month which included neurologist, internal medicine and today was pain management.  Throw in "walks into a bar" and it could be the beginning of a funny joke, but alas this is no joke and certainly not funny.

So the visit today was bittersweet.  My pain management doctor is great.  He's caring and smart, actually listens to me and offers a wide range of treatment options.  Unfortunately some of the options don't sound too good to me and none can provide any kind of guarantee for relief.  But the worse part of the visit today was his confirmation of something I was already pretty sure about...the CRPS/RSD has spread from my foot/ankle up my calf and to my knee.  There's nothing that can be done to stop it from spreading.  Well, I've spent the day mourning this development and now I have to move on.  In other news, I'm trying a new medication tonight so that should be fun.

Of course I don't have high hopes of miracle working medications and I hate the fact that I have to take them at all.  I've always tried to avoid medication but when you're dealing with neurological issues, well let's just say there's not an herbal supplement for that!  Not that I don't try.  Prior to my injury I discovered Dr. Peter D'Adamo's book, "Eat Right 4 Your Type" which is an eating plan based on the 4 different blood types.  I'm sure there's a lot of controversy on the effectiveness of the plan and the associated supplements but it worked for me (when I was disciplined enough to follow it) and when I incorporate the principals into my diet and take the supplements, I do feel better and have more energy.  Unfortunately the diet is very restrictive and hard to follow, however, I still take the supplements and can tell pretty quick when I've forgotten to take them.

The line of Right 4 Your Type products are made from high quality, natural ingredients.  I am Blood Type A.  I highly recommend these products that I've taken for several years.  In the past I've had trouble taking vitamins from grocery stores, drug stores and even places like GNC.  If you're interested and don't know your blood type, home blood typing kits are available on my Right 4 Your Type website.

Right 4 Your Type has played a significant role in changing my view on food and the link between what you eat and how you feel.  It sounds so simple and obvious but in this fast food, processed world we live in it's easy to get caught up in toxic food habits.  I never thought I would become the organic food shopper.  Or that some of my most beloved processed foods would someday turn my stomach but when you start eating healthy and "clean" and then try to go back to processed food, it usually tastes terrible.  As an example, I used to love Doritos®, now they taste like chemicals!

While I cannot pinpoint the specific risk factors or what I could have done to prevent developing CRPS/RSD, nor could I possibly figure out what caused my friend's brain tumor, I am on a mission to reduce toxins in my food and my personal care products.  Maybe I can reduce future suffering, maybe I can give my immune system a boost or a break, maybe I can help others avoid unnecessary illnesses...or maybe I'm just wasting my time and money.

But it's important to me to be as "natural" as possible in an unnatural society.  And that's how I came up with the name of my blog, "Melissa Unbleached."  One of the changes I made recently in my pursuit of being natural was to stop coloring my hair for the first time in over 15 years.  I'm still trying to get used to my natural "dirty blond" hair color but I sure don't miss smearing smelly chemicals on my head every six weeks!

Then I started to wonder what was in all the other stuff that gets smeared on our heads, bodies and underarms...and that's when I found Ava!

Melissa's Ava Anderson Non-Toxic site

Melissa's Right 4 Your Type site

"A journey of a thousand miles begins with a single step."

Lao-tzu

 

Although this is my second attempt at a blog, getting started is always the hardest part!  That and one of my biggest hindrance is the feeling I have nothing substantial to contribute to society.  But is that really for me to decide?  I've always been my worst critic.

 

So I'm diving in and not really sure what direction this is going to take me.  My intention is to share my journey, both figuratively and literally.  We all start our journeys much in the same way, just trying to get by, find a little happiness and make a positive impression on those around us.  I've had more than my share of bumps in the road and for now, I will start with my most recent bumps.

 

The catalyst, so to speak, occurred summer 2008 as I watched a young, vibrant and beautiful co-worker and friend fall victim to the most dreaded of all diseases...cancer.  There weren't a lot of early warning signs and it moved quickly and aggressively.  Then she was gone.  Why?  How does this happen?

 

I started paying more attention to potential toxins and carcinogens...and found they were everywhere.

 

Then came an even more personal event.  While walking in my back yard, my right ankle found a rather large groundhog hole.  What should have been a major sprain or minor fracture turned into a hellish nightmare that I am still dealing with almost four years later.  Early diagnosis and treatment are imperative and luckily I got those but when you're dealing with a complex, incurable condition...there's really no easy way out.  I have a neuro-autoimmune condition called Complex Regional Pain Syndrome (CRPS) also known as Reflex Sympathetic Dystrophy (RSD).

 

What is CRPS/RSD and why is it so bad? Try dealing with unbearable pain almost constantly, medications can take the edge off but my foot never truly stops hurting. Try having different functions of your sympathetic nervous system (SNS) going haywire. Most people don't even know what the SNS controls. The common symptoms of SNS disorders are slurred speech, loss of muscle strength, hypertension, headache, loss of memory, seizures, tremors, cardiovascular diseases, erectile dysfunction (not a problem for me!), breathing problems, and trouble with swallowing.

 

In addition to there being no cure for CRPS/RSD, there's no definitive cause.  Again my research has lead me to possible toxins in our food, household cleaners and personal care products.  Some may say I'm over reacting, worrying too much and maybe even being ridiculous.  But if there's something I can do, whether minor or major, to ease my suffering and educate others...why wouldn't I?

 

To be continued...

Melissa's Ava Anderson Non-Toxic site

Melissa's Right 4 Your Type site