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!