Friday, April 8

Strawberry Picking in SC

COLUMBIA, S.C. – South Carolina Agriculture Commissioner Hugh Weathers kicked off the strawberry season at James R. Sease Farms in Gilbert, SC with the first “official” pick this morning. Spring has sprung in South Carolina and it’s primetime for everyone’s favorite treat: farm fresh strawberries.
South Carolina is home to over 40 strawberry farms offering both “U-pick” experiences, as well as pre-picked berries. Spartanburg County leads the state in strawberry acreage, followed by Lexington County.
“Getting out to the farm is a great way to show support for South Carolina farmers after the very challenging year they faced in 2015,” said Commissioner Weathers. “It’s also a great opportunity to meet the people growing nutritious food for your family, all while enjoying fresh, local fruits and vegetables.”
Strawberry farms are open April through May, but visitors should check the farm’s Facebook page or website for specific opening dates, hours of operation and directions. For a full listing of strawberry farms, visit scfarmfun.org.
SC Agriculture Commissioner Hugh Weathers picks the first strawberries of the season at James R. Sease Farms in Gilbert.

 Editor's Note:  This is the same place I pick strawberries each year.  Great location.


Thursday, April 7

Minimalism: Grocery Consumption. Tips on Minimalist Living

When my kids grew up and moved out, I began to think about downsizing, which led to a surprising discovery that I was part of a burgeoning reinvention of a "minimalism movement" and I wasn't very unique at all.  (Stories of other minimalists. Ways to ease into minimalism.)

I began with the Tiny House Movement and built a 750 square foot apartment in my husband's enormous shop on our property in which I could live.  Unfortunately, I quit blogging in March of 2014 so I could devote my spare time to salvaging the un-salvageable and I did not document my journey into minimalism.

After a tumultuous year in my new habitat, I am loving it! 


Basically, I want to own less, maintain less, consume less, spend less.... you get the picture.   One day I decided I want to go grocery shopping less.  Thanks to my local high school FFA, I have my cucumbers, squash and maters started, I'm not talking about producing my own food though.  I mean this:  Use what I have.  See how long I can live without purchasing groceries.

I challenged myself to empty my fridge, freezer and cabinets without purchasing more stuff.

I'm now down to some weird stuff, probably stuff you'd imagine:  a whole box of white rice, a bottle of Lupo's Spiedie Sauce and no meat for it, peanut butter, bread crumbs, a few eggs.

Today's creative meal was so good,
I have to share:


Ignore the hotdog in the very old bun.  Although it was good. (Applegate Farm's organic, nitrate-free, grass fed,etc.)

This is the good stuff:  I made some minute rice and topped it with sauteed onions, green beans and broccoli. (with Happy Cow butter) The best part:  I sprinkled half a lime and half a lemon over it and that turned it into something crazy good.

It's the small things that make life so grand.
Live Small.

Tuesday, April 5

Rock Climbing in Ireland

End of post contains travel info.

While traveling in Ireland, if hiking, rock climbing or mountaineering is your thing, get in touch with the awesome people at the NUIG Mountaineering Club.  The Club membership is limited to students, alumni, staff, etc. of NUI Galway, but they'll give you good advice and let you hang a little.

So I found a few of them climbing up a rock face, smooth like a baby's bottom, on Day Four of my drive around Ireland.

I was headed up the Wild Atlantic Way from Doolin towards Galway, having just dropped my jaw where the choppy shoreline meets the dry, hard and deserted Burren. (more on that in a later post)




I laughed out loud at my Irish luck, and with windows down, music up, I screeched to a stop and fell out of the car with my 300mm around my neck, pulling me like a dog on a leash.  I used a rock like the one above as a tripod and took pictures of other people having a GREAT time, off the couch, away from electronics, in the wild outdoors of Ireland.  They smiled at me and I smiled at them, they waved at me and I waved at them and we were all so doggone happy.


The guys told me they were with NUIG and later told me that this area is called Ballyryan and is situated between two villages, Fanore (to the North) and Doolin (to the South.)

They went up...

 ... stretched...
 ... and went back down.....

Sunday, March 13

You might be driving in Ireland if:



You might be driving in Ireland if: 
  • You see a Dan Dooley car circling the round-a-bout a few times before choosing an exit.*
  • You can’t understand the traffic signs.**
  • You are going 130 kmh on the N69 trying to catch the ferry.
  • You see many Dan Dooley cars doing U-turns or pulled over while the driver gazes at a map.*
  • You notice all the deer crossing signs have cows on them.
  • You see a tractor pulling a trailer of hay bales, going 15 kmh on the M50.***
  • You see a Dan Dooley car taking a turn on 2 wheels, narrowly making his turn.
  • The town you enter proudly displays its “TidyTown” award.
  • You see a farmer using 16th century castle remains for their cows and donkeys.

* At Dublin airport, you can rent an Avis, a Hertz or Dan Dooley.  A Dooley comes with no GPS.  GPS is ten euros a day extra in a Dooley car.  If you're saving cost by renting a Dooley, you're not paying extra for the GPS.

Having said that, my Dan Dooley rental was great.  It was a modern, nice car in great shape and the staff were all very nice and helpful.  If he has the best rate, go ahead and rent from Dan Dooley.  I am mocking the drivers here, not the rental company.

If you haven't driven on the left side of the road before, follow someone first for about fifteen minutes until you get the hang of it.  Then get out of Dublin, visit Dublin last after you become proficient in left-side driving.  

*** The M highways are what Americans call Interstates.
** Crazy traffic signs.  Here's a few:






Wednesday, December 2

Pigeon River Pottery in the Smokies

When I downsized into my tiny house and began adopting the tiny house movement's philosophy of consuming less, producing more and supporting others in this endeavor, I gave away most of my kitchen supplies and kept the bare minimum.  Since then, I've been replacing my bare minimum with quality craftsmanship usable art, which, my friend, is expensive.


Each time I visit the Smokies, I swing by The Old Mill Pigeon River Pottery and pick up a piece or two.  Potter Tommy Bullen has made a lot of what I've adopted and a young guy on the scene, Leiva, has made the more recent pieces.  Pigeon River Pottery is made on site with materials from the region.  It is lead free and safe for the microwave, conventional oven, freezer and dishwasher.



On this past trip, I got to see Leiva in action.  So I purchased his casserole dish to commemorate.  Most of the pottery I've purchased is from the Hazel Creek and Blue Smoke lines.



The green and gold blend of Hazel Creek is reminiscent of the hazel tree with its brown hard-shelled nuts and leafy green vegetation....

Tuesday, October 6

Symbolism in Coat of Arms

A little late, but as promised, here is an explanation of the symbolism in my new coat of arms.  Again, a photo:


Motto:  Faith and Fortitude

Crest:  Tree Stump - a symbol of worship and rebirth.  I have a Cypress tree (death and eternal life) and a Palm tree (righteousness and resurrection) growing out of my tree stump to signify regrowth.

Torse:  Azure in color to represent steadfastness, strength and truth.  It is securing the Bible in place.

Helm:  The Word of God, secured with the Torse.  An open book like mine signifies manifestation and learning.

Shield:  The shape of my shield is the Old World style and the V in it stands for military strength or fortitude....

Sunday, October 4

Mid-Life Change Requires a New Coat of Arms




Life is fairly predictable.

When we first become adults, we think we are quite special and quite unique.  We hear the clichés about life and think:  That's not going to be me/usWe are tremendously different.

As young adults, my husband and I were crazy with love.  (I have a box full of thirty-year-old poems and love notes to prove it)  We never thought we would do anything typical or cliché.  I would certainly never experience menopausal madness and cruelty.  He would certainly never experience a mid-life crisis and start acting like a twenty year old when he is fifty years old.  The kids were absolutely never going to grow up.  I'd be waking up for midnight feedings forever.  And of course, they would never move away or marry, they would be mine forever.....

Saturday, July 18

Summer Bible Studies


http://blog.lifeway.com/womenallaccess/online-bible-studies/#.VapdSPlVhBc

There are two Lifeway online summer Bible studies that I am doing this summer and fall.  These studies consist of
  • purchasing your book
  • doing the weekly Bible reading and question/answer pages
  • watching the short video from the workbook's author.
After watching the video, you can leave comments and read the comments, so it is almost like being in the group study with them in person.

http://blog.lifeway.com/womenallaccess/online-bible-studies/seamless-online-bible-study/#.VgUxYMtVhBc

I'm doing Seamless by Angie Smith first, along with a friend that I get together with in person.  Click the image to get started!  In the Fall, I plan to do What Love Is by Kelly Minter.  Click that image if you'd like to start that one now.

http://blog.lifeway.com/womenallaccess/online-bible-studies/what-love-is-online-bible-study/#.Vape6PlVhBc

I was born and raised in a church and I have been a Christian for 40 years.  The Seamless study is still teaching me new things.  That's how the Spirit of God works -- always revealing new things when you need them most.    Seamless brings the entire Word of God together in chronological order and we dig into why these particular historical stories are included in God's Word.

If you are looking for a new study or if you enjoy building relationships and communicating through the web, try one of these!  You can go at your own pace and watch the videos anytime you'd like.


Thursday, June 18

Win a Pair of Adlens Sundials Adjustable Sunglasses

Summer Fun in the Sun

Package Give Away

$58 value includes Sundials, sunscreen, beach towel and a magazine.

Contest is over, Fern has won the package.
Thanks, Lois, for your comments as well.

Simply leave a comment about what you do for Summer Fun in the Sun and you will be entered in the random drawing for this Summer Fun Package donated by Adlens.  You must be 18 years of age or older to enter this contest.

Winner will be chosen on Sunday, June 28th and notified in a blog post on Monday, June 29th.

I was approached by Adlens Sundials™ to review a pair of adjustable sunglasses, a concept in eye wear that I didn't know existed.  I was very intrigued because I currently use prescription bi-focals, readers, sunglass readers and sunglass bi-focals.  If I'm outside, I'm wearing sunglasses -- I'm one of "those" types of people.   I had perfect vision until I hit 40 and it's been downhill every since.

With Adlens Sundials™ you can see up close, into the distance and all around you, at the turn of a dial. These sunglasses can instantly go from poolside readers to longer distance glasses, from -6D to +3D diopters.  They have UVA and UVB protection and a single pair can be adjusted to improve vision for 90% of eyeglass and contact lens wearers who do not have astigmatism.

Within hours after receiving my package in the mail, I took the Sundials out for a trial.  I thought they might look goofy, but they didn't.  (I'm thinking about purchasing the John Lennon Sundials and they really might look goofy, but fun.) 



I loaded my kayak and jumped in the truck.  The power of each lens is varied by moving two wave-shaped polycarbonate plates via a dial on each upper corner of the glasses.  I reached up and twirled the dials into place so I could see far in the distance as I drove to the lake.  My eyes are different so I adjusted each lens accordingly.  That was a big advantage of these sunglasses over regular bi-focal sunglasses....

Tuesday, June 9

ASCO 2015 MPN Recognition and Progress

The American Society of Clinical Oncology Conference (ASCO) was held in Chicago last week, June 3 - 7, 2015.  Giant leaps were made in the presence of and discussion of blood cancers at this conference this year - myeloproliferative neoplasms (MPN) such as the one I have - Polycythemia Vera (PV).  Historically, this conference has focused on tumor cancers and hasn't included much on MPNs, leaving it to the American Society of Hematology conferences.

This is a big step for us rare MPNers and I've been watching the conference news reports as they trickle in.  The biggest news came from Baxter/CTIBiopharma on their Pacritinib data, a drug for myelofibrosis patients with low platelet counts.  (I have the opposite problem, high platelets.)  Also the conference reported information on allogenic stem cell transplants for MF.  Scroll down for links to some articles from the conference.

In addition to new drug trials, researchers have started combining drugs and watching intently for effective treatments.  The key to the drugs we have so far is personalized treatments.  Some patients adopt a wait and watch attitude while some are more aggressive and proactive (me).  One patient at the conference reported, "I feel like a thorn in my doctor's side."  Exactly.  Me, too.  It's difficult to feel that way after appointments and many times I want to give up and say "whatever."

Much research focuses on trying to reverse the disease process, in other words, trying to keep it from transforming to MF or Leukemia.  And secondary to this, is trying to create an acceptable quality of life.  That's pretty much where I focus and push my doctor.  I'm a HUGE believer in quality of life over quantity.

"The process of scientific advance with patients is a little bit like watching sausage being made -- ups and downs.  For some, pulling back that curtain or that process can be too much information, but I do think the partnership between physicians and patients, particularly in these kinds of diseases, really is key.  A lot of the advances have really been made by patients being so generous with their time or involvement in trials, or a lot of their bloodwork to be used for research -- All of these key advances have really come from those sorts of efforts."  - Dr. Ruben Mesa

MF and Leukemia are the biggest fears of most patients with an MPN.  PV or ET, two of the four MPNs, can evolve into MF or Leukemia, but it doesn't happen to most of us.  It happens to under 10%, maybe around 3% if I remember correctly.

Also at this time, those of us in the MPN world are celebrating the tenth anniversary of the JAK2 discoveries, chiefly the JAK Inhibitors.  I may not have this perfectly understood, but here's my understanding.  The mutation of the JAK2 stem cell results in this rare cancer.  Therefore, finding meds that inhibit the mutation are a better treatment than simply slowing down the cell production.  The JAK2 mutation is how I was originally diagnosed via a bone marrow test in a small doctor's office where I was dazed and confused, surrounded by struggling chemo patients and loving care givers.

I am currently on an oral chemotherapy called Hydroxyurea.  We check my blood counts every other month and adjust my dose.  It's all a numbers game right now for me.  When my blood counts are in a certain zone, I itch like crazy.  In another zone, I am tremendously fatigued and fight foggy thinking or "chemo brain."  In another zone, I suffer bone pain.  All my life, my parents, husband and doctors were helping me try to find out why I suffer "leg aches."  As a child, we called it "growing pains."  I now know that a lot of it is bone pain from this disease.  When the blood counts are in another zone, I get restless leg syndrome and can't sleep well.  And always, I have abdominal pain; in fact, that is what took me to the doctor in the first place.  We think it is spleen related, but not sure because my spleen isn't enlarged enough yet to show up on the MRIs.  Etc. Etc. Etc.

Most hematology/oncology doctors don't know much about this and have very few patients.   When my doctor was hedging some of my questions, I asked him if he currently has any other PV patients.  He hedged his answer and basically admitted he has had very few in his career.  When he first diagnosed me, he said it wasn't cancer.  After my research, I asked him if it's cancer and he admitted yes.  At first, he told me 8 years is the average life span after diagnosis.  After I did research, I saw that this information is outdated.  Currently, the average life span after diagnosis is around 20 years.

Upon my diagnosis, I visited specialists at Mayo and Duke and together came up with a game plan which I brought back to my small town hem/onc.  I regularly check the Internet for more information and have joined several support groups.  Everybody is just as confused as I am.  But the camaraderie is tremendous.

Links:

MPDchat - If you or a family member has an MPN, join this Google Group, there is no fee to enter. By far, this is the best "support group" I've found.  Top level questions and answers.

Allogenic transplantation for myelofibrosis:  Final analysis of a prospective study after a median follow up of 5 years

ASCO 2015 - JAK Inhibitor Pacritinib Proves Effective for Easing Symptoms of Myelofibrosis

An ASCO Primer:  Which Drug Makers are Pursuing Which Kinds of Therapies

Watch a Roundtable Discussion on MPNs


Sunday, May 24

Eosinophils and Basophils Explained in Myeloprolific Neoplasm Blood Disorder

In a previous post, I mentioned for the first time that I have polycythemia vera, which is a myeloprolific neoplasm (MPN), which is a mutant stem cell in the bone marrow that results in the overproduction of any variety/combination of blood cells.

On of the very, very minor effects of this is pruritis - terrible itching.  If you know me, you've seen me itching like I have fleas at times and it's embarrassing sometimes and annoying all the time.  It is due to increased histamines, similar to an allergic reaction, due to increased Eosinophils and Basophils in the blood count.

This video is the best explanation I've found, so for you fellow MPN people, take a listen.  Also, allergy sufferers, this will help you understand your reactions better:  Dr. Susan Leclair.

Thursday, May 21

Canoe Trail Aiken State Park, Edisto River, South Carolina

May 2015:   Winds:  12 - 14 mph   Water Level:  7' 
South Fork of the Edisto River -  1 3/4 mile from launch to take-out dock
75 minute trip by experienced kayaker going slow


I decided I was ready for my first solo kayak trip.

I have polycythemia vera, a rare blood disorder with a twenty-year shelf life, and was coming off a normal three-day fling of fatigue.  I needed fresh air, sun, water, birds, mud and snakes.  In other words.... no humans.  I've learned that if I just roll with the fatigue when it hits, sleep 12 hours straight, take some time off work, it'll pass with little notice..... and a little lovin' care by my daughters.

Choosing a waterway with which I am well familiar, I checked the weather, the wind and the water levels.  I notified the adorable park ranger (so young!) that I was headed out alone.  I asked him about the navigation and he assured me it was typical.  No surprises this trip.  He was right.

I put in at the top of the canoe trail and the water level was hovering below 7 feet.  I prefer 8 feet, but felt confident 7 would be deep enough for the submerged logs and shallow enough for the low trees.  An ice storm hit a couple winters ago that made the water impassable.  My husband and I navigated the jon boat while our good friend Doug ripped a trail through the river with his chainsaw.



At 7 feet, I had some stump-jumping to do.  The first one caught me off guard and I approached it at an angle.  My adrenaline performed magnificently and I got myself straightened out after only two or three seconds of being out of control.  The second and third jumpers came as no surprise, I hit them straight on and wiggled my way across.

I remained silent most of the trip so I could see and hear the animals in their natural habitat.  At times, I made some noises before passing under low hanging branches that might contain snakes.  I saw one snake and he let me pass comfortably.  I heard three other snakes plop into the water from their lofty branches several feet before I passed under.  Always be aware of the snake on the low branch that might jump into your boat.

The 12 - 14 mph wind.  OK, let's talk wind.  12 - 14 mph feels nice, a cool breeze.  However, when you are alone on the water, floating under broken tree limbs that creak as you pass by..... 12 - 14 mph feels like 50 mph.  I expected to see Jim Cantore around the next corner in his rain gear, dangling off a branch shouting at me to evacuate, for crying out loud EVACUATE!

But that didn't happen.  12 - 14 mph winds are perfect for a kayak trip on the Edisto.  If you paddle on the lower part of the Edisto, be sure to check the tides.  There's no reason to paddle against the tide both ways unless you just want to..... or plain don't know better.  (ask me how I know this)

I saw one other boat on the water, a lovely couple fishing in a jon boat....