Thursday, February 16, 2012

On The Dark World...Of Valentine's Day Flowers

The Dark World… of Valentine’s Day Flowers

There is a secret world, a dark world.

A world shrouded in mystery and deceptions, lurking in the advertisements you see, hear and read.  The images forced upon you leading up to the most simultaneously loved and hated day of the year–Valentine’s Day. That world (dramatic pause) is the world of corporate flower sales.
Corporate flower sales? Really? Doesn’t sound too controversial, or mysterious, or even interesting. But these “big dogs” are ripping off unbeknownst consumers and shutting down local businesses in greater numbers each year.

Sunday, February 12, 2012

The Dysautonomia Dementors and POTS Patronus

I love Harry Potter.  I love the books, I love the movies, I love the brilliant world created by JK Rowling.

My life right now is pretty consumed by POTS and Dysautonomia, so I find myself making comparisons and analogies everywhere I look.  Which is actually not many places, considering I am home bound at this point - but does involve lots of movies, online stuff (no porn of course- I swear!), and books.

So when I last watched Harry Potter and the Prisoner of Azkaban (while in the hospital), which is when we first see the Dementors, I burst into tears.  I saw that dark black ghostly scary looking thing sucking the life out of Harry and them him passing out with the screaming noises in the background - and all I could think of was how that was how I felt day in and day out.  That was at the height of my "dark times", but I think many people struggling with dysautonomia and other life force/energy-sucking diseases can relate. POTS, Dysautonomias, CFS/ME, Fibro, Lupus, people going through Chemo, RA, any of the "spoonie" illnesses - we all struggle with days when the Dementors swoop in and gobble up every last bit of energy, happiness, and the ability to move and function.

Times like these, I usually have "overdone" it the day before, or even a few hours before - and it all catches up with me and my body shuts down.  Literally just stops working.  And overdoing it (in my current state) involves playing on the floor with my son for 20 minutes, or wheeling into the kitchen and standing up enough to make coffee, or rocking the baby for 30 minutes while in bed when she's fussy.  Showering is the real "Dementor's kiss" of death for me - warm (no hot allowed!) water causing vasodilation (veins dilating) coupled with arms raised above heart level to wash hair making my heart rate faster equals total body shut down.  I have to plan my showing carefully.

This body shut down - or the lifeless I've-been-attacked-by-a-Dementor feeling is pretty unreal.  I've never had it this intensely before, even after all these years of dealing with POTS.  I will literally feel it coming on, know I need to be laying down, and then my muscles stop responding and working.  Then I start shaking. Its an internal shaking feeling as well, similar to adrenal surges, all wrapped up in a nice ball of pain.   All I can think of is how I must close my eyes, must sleep, and hope I wake up with a body that responds again. I then pass out and sleep for a few hours, or lay in a semi-conscious state. Just like Harry.  Except I think he woke up faster, and chocolate helps you recover from Dementors.  Oh, how I wish chocolate would fix this with me!

This ties in with the whole Spoon Theory; having to delegate your energy to avoid this horrible crash.  My (and other "spoonies") life revolves around picking and choosing what activities to do for that day - and everyone has a different tolerance level.  I used to be able to work 16 hour days, or push through making flowers for 5 days straight over Valentine's, but would get very sick and need to recover for days after.   Now it's only one to two activities a day keeps the dysautonomia Dementor away.

My POTS Patronus (the spell that creates an animal Harry and the others use to defend against the Dementors) is currently an Octopus.  No particular reason except that octopi are super cool, and I'm a marine bio geek.  They are the smartest of the cephalapods (squid, cuddlefish, octopus, etc...) and mimic their surroundings to avoid prey animals.  They have 8 legs to get things done - so I'm assuming they are multitasking type-A non-stop workers like me.  I want that back - the ability to act physically the way I feel mentally - and get up and move again to get things done.

What's your POTS (or other Spoonie) Patronus?  Why? What do you do to avoid the crashing Dementors Kiss?  I'd love to hear!


Sunday, February 5, 2012

Get Edumacated! 5 Worthy Causes in 2012

Get edumacated in 2012!.  

Oh, and maybe pick a cause and get involved too. 

I'm a little late posting this, my health and getting my other projects up and running caused some delays.  But it's only February, so there's still plenty of time to do something to help someone else out this year, and make a difference. 

1. This is totally self serving, but the only self related topic on the list (I promise!). I have a chronic illness called POTS, part of a larger family of diseases called dysautonomiaNational Dysautonomia Awareness Week in 2011 was Sept. 12-19th, and I didn't even know about it!  2012 will be different.  We HAVE to get doctors and the general public edumacated about this extremely disabling disease - it is thought to affect over a million people in the US alone. That is too many for so few people to know NOTHING about it. There are ZERO neurologists in Hampton Roads (population ~1 million) who know/deal with it. Sucks for me.  There is lots of promising research going on, but with only a few institutions involved.
What you can do: Spread awareness! Link back, re-post, whatever it takes. Or, donate to the National Dysautonomia Research Foundation. I started a site called STOP POTS Virginia, and have teamed up with other bloggers to raise awareness at Team Fight POTS.  Follow us and spread the word!

2.   The hunt for dolphins in Japan's Taiji Cove is on.  20,000 dolphins are killed annually in this secluded cove in Japan.  Japan is a huge broker of dolphins for entertainment, and dolphin (and whale) meat is a popular delicacy there.   Dolphins are herded into the cove, where a few are picked out to be sold (usually for $30k plus each) to zoo's, theme parks, and "swim with the dolphins" programs. I won't comment on the value (or harm) of captive dolphins used for education here, that's a whole other post. But, the remaining members of the pod are all killed.  They are family groups, animals with higher intelligene, and the only other animal besides humans known to have sex for fun. They are beautiful, amazing, and deserve our protection. And they are not just killed; but drowned, beaten, shot, and all around slaughtered.  It's brutal and I was shocked to read more about it. 
What you can do:
Stop the Senseless Slaughter of Dolphins in Taiji, Japan! Support the Sea Sheppard Cove Guardians.
There is a ton of info on their site, and links to resources.   Feeling a bit more extreme? Boycott Japan's products all together, or tweet the prime minister directly
Cove Guardian Reports

3. SOMALIA and the famine in East Africa: The entire time I was in the hospital, and started feeling sorry for myself, I chanted (in my head) "I don't have cancer, and I don't live in Somalia". In Summary, according to Amnesty International: "Armed conflict between armed Islamist groups and pro-government forces continued in southern and central Somalia. Thousands of civilians were killed or injured as a result of indiscriminate attacks and generalized violence, and at least 300,000 were displaced during the year. Access by aid agencies to civilians and the displaced was further restricted by armed groups and insecurity. Humanitarian workers, journalists and human rights activists remained at risk of killings and abductions. Armed groups controlled most of southern and central Somalia and they increasingly carried out unlawful killings, torture and forced recruitment."
Also - the ENTIRE Horn of Africa is suffering a terrible famine: Kenya, Somalia, & Ethiopia have been hit hard, and children are especially susceptible to famine. 

What you can do:  Read up at Amnesty International, and check out these other sources for info and places to donate: Unicef, Childcare Woldwide, and Wold Vision.

Linda Norgrove
4.Get involved with women's rights in Afghanistan, and other war torn regions.  We think we have it rough in this counrty - and yes, the system isn't perfect (women get paid 25% less than men on average for the same positions in the workforce).  But we have RIGHTS here, and in many parts of the world women are viewed as second class citizens, and have very few rights, opportunity, or the option to even get an education.  My brother is very involved in Central Asian politics and relations, and through reading his articles I have discovered some inredible organizations fighting for women in war torn areas.  The Linda Norgrove Foundation "is a new grant-giving trust that provides funding for women and children affected by the war in Afghanistan. The Foundation provides help in the following areas: education, health, childcare, including orphanages, widows, who make up 1 in 5 of the adult population."  The foundation was set up in memory of Linda Norgrove, who was a devoted aid worker in Afghanistan that was kidnapped and killed, and sounds like an amazing woman.  You can read more about her and what the foundation is doing at their website.
Another great organization to get involved with is Women for Women.Org. "Since its creation, Women for Women International has given hope to more than 299,000 women survivors of war and conflict and helped them move toward economic self-sufficiency with our year-long program of direct aid, rights education, job skills training, and small business development." Go to their website to see how you can help - this is their program model:

5. Hookers for Jesus.  That's right - HOOKERS FOR JESUS! I saw a retweet by this group, and thought it was a joke.  I ended up reading their website from top to bottom, I was so enthralled by the founder Annie's story, and what they do to rescue women from the slavery that is prostitution, focused in Las Vegas. "The primary services and programs of Hookers for Jesus are mission driven and are designed to minister healing and restoration of individuals and families affected by sexual exploitation. The primary services of Hookers For Jesus is to Hook (Outreach), Heal (emotional & spiritual restoration) Help (Transitional Assistance) through the Destiny House program." Hook, Heal, and Help.  I love it.  They are providing safe homes for men and women, they patrol the streets of Vegas looking to help prostitutes, and do many other incredible things to save sex slaves from their captors.   Go check out their site and find one of the many ways you can get involved in this very real problem that exists today.