Rough Week?

If you did not end your week with a 4 lb cat dangling from his claw painfully embedded your right nipple, you had a better week than I did!

Knee Blow-0ut & Rib Party

Ribs are not the only things he likes.

My week started with an emergency MD trip where hubs had 34 cc of fluid drained from his knee (it blew up for no apparent reason). In between, while preoccupied caring for hubs, our pure white Maltese managed to get into leftover ribs and have a BBQ party all over himself, the kitchen floor and into his crate (housed in the carpeted living room of course). Can you spell MAJOR CLEAN UP TIME?

Wind, Leaves & No Heat
Also included in this fun filled week: The day before my hubs hurt his knee, he removed the pool cover to add winterizing chemicals. That night we had a raging windstorm that blew a massive quantity of leaves into the now uncovered pool and brought us our first frost of the season. This necessitated moving plants and covering fruit trees. (can you spell SPONDYLOLISTHESIS ouch!) The aforementioned pool remains partially uncovered and full of leaves.
And BONUS....Our furnace is not functioning and without funds to repair, our home temperature ranges between 60 - 64 degrees...thank God we live in California.

Nipple Incident Revealed:

Innocent looking offender.

We have a very frisky 5 month old "kitten" named Shiloh. He brings much joy into our household. He gets quite excited to see me first thing in the morning. While getting my first cup of coffee of the day, Shiloh bounded into the kitchen and did a flying leap, ostensibly into my arms. This is a "new" trick" so I was unprepared for his acrobatic assault and as he hit me chest high, he attempted to grab on with his paws. While sliding down the front of my nightgown (it was the first cup of coffee of the day remember?) he managed to embed his very sharp left paw into my very large right breast and dangled there while I, screaming in alarm and pain, attempted to gingerly lift him, removing said embedded claw from my bleeding nipple. How I managed to do so without spilling a drop of coffee is beyond my memory recall.  All the while, crutch impaired hubs was sitting at his computer in the kitchen seriously trying not to laugh. By the time I extricated the cat, and showed him my wound (nipple exposure over morning coffee woohoo!) we were both laughing so hard we scared the offending cat away. BTW- If I were a Real Housewife of Beverly Hills I would have been knocking on Adrienne and Paul's mansion door requesting immediate intervention for nipple repair. Since I am a Real Housewife of Merced, I cleaned it, slapped on some antibiotic ointment and proceeded  to finally enjoy my first cup of coffee of the day.

It's Good for Balance
There is a fine line between laughter and hysteria....which we dance along quite often these days--it's good for balance.

If you had a rough week too, tell me about it! If I made your week a little bit better by making you smile, leave a comment and let me know.  It's kind of lonely doing this balancing act here!

Chronic shoveling.

Snowed in and disabled is not an easy condition to manage.

Chicago Blizzard of 2011

The whole country watched, and the news and the Chicago Red Cross tweets kept us all safe and apprised of the situation. It was disconcerting at times when the wind gusted to 50+ mph to realize that there was just 18 inches and a little bit of wood, brick, and insulation keeping us safe and warm during a 22 inch blizzard. But with a few days advance warning and good preparation, we and most others made it through just fine.

The aftermath….now that is another story.

Since I am disabled and so is my son, most of the leg work managed in this household is done by my husband. And although he is young(ish) and stays in shape attending the gym regularly, he has had three hip replacement surgeries and a knee replacement.

If we were employed, we would have a service to shovel/plow. We don’t, so he’s "it."

The sheer volume of snow that needed moving was daunting. There have been times where we “dug out” together, or tag team….not anymore. There is no easy way to ask or help. It has never been easy for us. This week I asked for help and am so thankful to the neighbors who pitched in.

Matt brought a snow plow and the brute strength of youth. Jim and Margie, though closer to us in age, are blessedly much healthier (Margie ran the marathon last summer) and brought compassion and shovels.

We may not be able to move much snow
BUT

We can bake. And we make a great team in the kitchen. Paula Deen would be proud---so much “Real Butter”!

So here are pics of some treats we made for the neighbors to thank them for their help.

BTW

Our house is still available for sale so these wonderful neighbors can be yours next…complete with a fenced yard…snowbanks not included.

Thank you Matt (Nicole and Vincent)
Thank you Jim and Margie.

Congress is making me Ill

Congress is making me ill.

They say that stress is bad for your health.
I am chronically ill, and the mother of a son with Marfan Syndrome. I consider myself an expert in Healthcare. And I am sick.
It is time for me to step up and say that the #GOP is making me sicker. Literally.

Because I am so passionate about our country, and because so much of our households survival depends on the availability of affordable healthcare, I feel compelled to speak up about what the #GOP is doing right now, their first week in the new session of Congress.
Instead of moving forward and helping to support small business growth (which many economists say is the true way to stimulate growth and create jobs) the #GOP is revisiting the Affordable Heathcare Act that passed, with majority and the basic overall approval of the country. The #GOP wants to repeal the Affordable Health Care Act completely, Point Blank.

No one on either side of the aisle thinks that the Affordable Health Care Act is perfect. It isn’t. It needs tweaking. As does Medicare (reducing fraud for starters) which would make it stronger. And Social Security (raising the annual limit) and instituting a cap on income to qualify to collect after the age of 65.

The #GOP wasting our tax dollars debating Healthcare Reform at this juncture is irresponsible, and down right detrimental to the whole spirit of the country. But more importantly, it is a slap in the face to many of their own constituents. The #GOP needs to man up and grow up and take care of BUSINESS, starting with the economy.
And when doing so, do not take defense spending off the table. If you have an efficient machine, then that machine can be trimmed down, made tighter and leaner, yet still provide the greatest national security and armed forces in the world.
The #GOP needs to regroup, create jobs, elevate education, and tackle the immigration issue.
Let Affordable Health Care settle in and tweak it as issues arise. Do not create side issues, diversions and waste our tax dollars on not moving forward….today.
Leave OUR Affordable Health Care Act alone.
Prioritize better.

Because, frankly, the stress is killing me.
There are too many people still out of work.
There are too many people still without affordable health insurance.
We need to protect our borders while reducing crimes along it.
We need to take care of each other, as a nation, create jobs and opportunities within our borders and share that production with the world. This is what will make us a great country again.

I'm just sayin....

YES, I wear size 11 And You're Point???!

My Marfamily recently inquired about larger sized UGGS for women. One of the hall marks of Marfan syndrome is long feet. Not so easy on ladies. My large feet have been a challenge all my life. I am answering their specific question about UGGS from my own personal experience.
Nordstrom carries UGGs in extended sizes but they are expensive and their sale prices are not too great. However, if you live near a Nordstorm Rack they have shelves and shelves of extended sizes, shoes, boots, sandals--everything year round. Look for the best prices off season.
Online Zappos.com
Not only do they carry extended sizes of UGG, they have a huge variety....they have great sale prices AND they have a huge variety. Best yet--ALWAYS free shipping (both ways if you return items).
And no, I do not work for either of them.
Buy shoes for my size 11's there and am big fan!

I have other "shoe" resources that I can share if you wish. Just ask in comments.
But tonight I am exhausted and packing and sorting and supervising and needing a rest. lol

Online Charitable Contests REMASH: Dear Beth K.

This post is in response to the Chase Community Giving Contest controversy and the many blog posts and articles that have ensued. This post is an open-letter response to Beth Kanters blog post linked below.

Dear Beth Kanter:

Re: http://beth.typepad.com/beths_blog

Thank you for all the time and thoughtful effort you put into your research re: cause marketing. Your depth of knowledge and dedication are amazing. Your hard work and passsion are an inspiration to many more people than you could possibly imagine. As I posted yesterday on Facebook, I think that we all (corporations, non-profits and individuals) are on a learning curve here and much can (and hopefully will) be learned from the Chase missteps.

And to All the Naysayers:

There ARE many non-profits that will happily continue to participate in any way, shape or form to increase their chances of funding. Especially smaller ones like the Ehlers Danlos Syndrome Network Cares
www.ehlersdanlosnetwork.org that is one of the 100 finalists in the CHASE contest http://apps.facebook.com/chasecommunitygiving/home/faq
I am speaking from experience as a volunteer for the

National Marfan Foundation www.Marfan.org. and believe me when I say that this is not a popularity contest to all of us who work tirelessly to promote awareness of all connective tissue disorders and chronic diseases. It is probably a safe bet to say you don’t know much about EDS. Do you know what Marfan syndrome is? Would there be much chance that you would hear about these organizations if those of us working so hard and trying to compete with more well named and recognizable charitable organizations for very competitive donation dollars were to choose not to participate?

A Mission and Vision
I am in the process of building a Non-Profit Organization to Fund Post Secondary Education for Young Adults who have chronic medical conditions such as EDS and Marfans syndrome and those who have survived catastrophic illness as children or teens. Many of these young adults have the tremendous talent, passionate desire and strong will to contribute (and do not want to go the route of SSDI/Medicare). However, in many cases, their chronic illness does not allow them to physically attend and complete a “traditional” university education on a full time basis. Nor do their parents have the financial resources to support extending their educational funding beyond the typical college student to the 7 to 8 years that would be the minimum necessary for them to complete a degree program. Especially since these families have been straddled with health care costs that supersede college investment plans. Even with “good insurance coverage”, between co-pays, coverage limitations, prescription medications and non-covered services many families struggle to keep current on their everyday bills. Again I speak from experience. And to compound matters, if these young adults do not attend college full time, they can no longer be covered on their parent’s health insurance and are “uninsurable due to pre-existing conditions” or “insurable, but with prohibitive premiums”. While this health care dilemma is a separate issue that myself and many other “full time volunteers” have been working on also, it is peripheral to the topic today so I will not digress further. My point is simply: these individuals want the opportunity to learn, contribute and pay their own way. With very few exceptions, the only way they will be able to do so is with assistance that is not available to them currently.

And Back to the Main Topic for Today

And therein lies the beauty and hope inherent with these Online Contest programs. Yes, I was a business major so I know all about the “marketing sense” that motivates companies to take this route. Yes, I can be as cynical as the next person if I choose to when considering the bottom line mentality of large corporations. Challenge their motivation all you want. But I challenge you to walk a day with me. See the hope that each new lead can bring to those who volunteer at the grass roots level, on a daily basis with just a slight opportunity for 1) the possibility of any funding 2) increasing awareness of their cause 3) networking

And to Beth
Who I quote “Do these contests really have impact? Do they really help nonprofits or distract from their work? Or is this just marketing?”
1) Yes, these contests really have an impact.
2) Yes indeed, they CAN help nonprofits, especially through funding. And any distraction factor to their paid workers is outweighed by the potential for a tremendous amount of increased CAUSE awareness and other intangibles (and in the case of EDS Network Cares and the National Marfan Foundation—most of the soliciting and networking for votes is done by unpaid but extremely effective and passionate volunteers).
3) Marketing yes, “just marketing" no. Call me a Pollyanna but I choose to see the good in everything and leave the cynicism to others for now. I have too much work to do to approach this any other way. Gullible? I don’t think so. Hopeful, hell yes. Motivated and driven, you bet. I and many more like me have too much work to do and too many things to accomplish to choose to be any other way.
Stephanie Parkinson http://stefparkspeaks.blogspot.com/
Stefpark@aol.com
I urge you -- please leave a comment. As a neophyte blogger with much to contribute, your support and comments are greatly appreciated.
I may be disabled, but I have a voice and a computer, passion, focus and drive so Open Mouth/Insert Topic.