stephanie: open mouth, insert topic

Rough Week?

2011-12-06T11:51:00.001-06:00

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!

Point Redemption for Holiday Purchases? Do The Math!

2011-11-27T14:57:00.025-06:00

Who doesn't have a tight budget for the holidays? Creative planning and redemption of credit card rewards points can help you stretch your holiday purchases. If you are a serious planner and want to use those membership points most effectively, then do the math, do the math, do the math!
Consider purchasing store gift cards with those points and using the gift cards to purchase gifts. Point redemption values are not all equal and when you compare values, you can sometimes find enormous savings, hidden on your credit card reward sites!

For example: I recently wanted to redeem points for a new IPod for my son's November birthday. He is a young adult musician so he requested an IPod with the most storage. On my credit card redemption site, the point redemption value of the "largest" IPod model was 91,500 while a smaller version was available for 70,250 points.

This seemed outrageous to me so I did a bit of research. I checked Best Buy online and saw the largest model IPod was available for about $250.00 retail. Returning to the aforementioned credit card site, the point redemption value for a $250 Best Buy gift card was 25,000 points--a savings of 66,500 points! That's a HUGE difference. Redeeming my points for a $250 Best Buy credit card and purchasing the IPod at Best Buy proved to be the most cost effective way of using my points to purchase this gift.

Let's review

o 91,500 Redemption points needed for IPod
o 25,000 Redemption points needed for one $250 Best Buy gift Card

o 66,500 Difference in points for gift card vs points for IPod

With the points savings I could redeem another 50,000 points, receive an additional $500 in Best Buy Gifts cards and still have 16,500 remaining in rewards points.

Net effect--for 75,000 points, I have the desired IPod PLUS an additional $500 in Best Buy gift cards for more holiday shopping!

Those are real numbers and seriously significant savings!
Note: (Apple is NOT a wholesaler friendly vendor and rarely discounts its merchandise which leaves third party sites like points rewards programs having to charge premium redemption rates for any Apple products).
Credit card redemption rates vary from site to site but a little research and creativity can help you save money using point redemption this season.

It pays to do your homework and plan in advance. It will take about three to four weeks for us to receive our $250 ‘rewards’ Best Buy card. While delayed birthday gratification is OK with our adult son, the timeline for using reward redemptions in this manner requires a bit of planning ahead. However, with proper planning and a little creative research, you could have some of those rewards points in your pocket (by way of redeemed points credit cards) to spend while hoofing it to your favorite stores on Black Friday or Small Business Saturday.

Let me know if you find similar creative ways to save using your point rewards program!

We have landed!

2011-05-30T20:31:00.004-05:00

It’s a far cry from Chicago….

Our first Spring in Merced, Ca has been full of delightful surprises and although the “natives” here claim that it has been a cold, wet spring, we are relishing the mild temperatures, bright sunshine and cool evenings that enticed us to relocate our family here.

We are thrilled to have harvested three green beans from our home garden already, have healthy cucumbers on the vine and a variety of thriving tomato plants. In Chicao, May 15th was the absolutly earliest you “should” plant and there was still a risk of losing your garden to frost (and even freeze).

Suffice to say, we feel like we are living in gardening nirvana.

Things are hopping at “The Gardens” and Brad has been busy meeting local suppliers, growers and most importantly, customers, who we hope will become long time friends. We have been warmly welcomed by the community and are delighted when people stop by and comment on how nice the place looks. Brad has been working hard to ensure that we are well stocked with all variety of spring planting needs. We are meeting local growers and suppliers and look forward to learning the ebb and flow of the seasons as we continue to gain knowledge of the local planting and harvesting cycles.

This week we are busy planning our Grand Reopening & Parking Lot Clearance Sale. Think of it as “The Gardens” spring cleaning sale. We will be offering many varieties of roses, fruit trees, shrubs and planting materials, all priced to move from our garden to yours!

Bring Dad by and have him pick out his own Father’s Day gift, or purchase him a Merced Gardens gift certificate. The sale starts at 8:00 am Friday and Saturday. We will be serving refreshments throughout the day. Stop by and visit us at 1007 Tahoe Street in Merced

Chronic shoveling.

2011-02-04T15:35:00.013-06:00

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.

Affordable Health Care Act Revisited? Why?

2011-01-18T11:58:00.006-06:00

It is a shame that John Boehner and the GOP are wasting millions of taxpayer dollars (OUR MONEY) on political posturing and blowing hot air over an issue that was debated, passed by both House and Senate and signed by the President in December.

The Affordable Care Act will not be repealed. The Senate will stop it or President Obama will. It is a done deal, good for our country and citizens.

What is wrong with the GOP is that they think it is a good idea to revisit this issue when our country desperately needs leadership and consensus in the areas of job creation, immigration and economic growth. Shame on the GOP for NOT focusing their time on what really matters TODAY.

The political slogan we need to remember and revisit is "Change we can Believe in"

The GOP obviously STILL has not gotten the message as they insist on continuing their legacy of SOSO politics (Same Old Same Old political posturing).....what a waste.

Fed up with wasteful and inept leaders?....Tell them so---speak up--speak out

Contact your Congressman here

Contact your Senator here

Congress is making me Ill

2011-01-07T22:30:00.006-06:00

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....

This is the plan

2010-09-07T13:01:00.010-05:00

Dear Family and Friends,

This is the plan.....

This is what I have: Spondylolisthesis
(hence, the new nickname "Slinky Stef")

We have an action plan of Physical Therapy, Excercise and Rest.

Our House in Chicago is for sale.

This is where we hope to move: Merced, CA

If you want more details, follow me on FACEBOOK or Twitter @stefpark.

We will keep you posted as soon as we can. (when I can sit upright and type with minimal pain).

Happy Fall

<<<<-----one of my "Favorite" VINTAGE Fall Brooches

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

2010-08-04T18:20:00.009-05:00

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

Coming Clean

2010-06-30T13:53:00.007-05:00

Sick in the Pit of my Stomach

I should be paying bills...but I'm not... because every time I look at a bill I get a sinking feeling in the pit of my stomach. Not unlike the feeling you get when you learn someone you love is incredibly ill or the feeling I get when I watch the increasingly sad news from the Gulf of Mexico oil disaster.

Those of you who know us, know a bit about our circumstances. For others, I will come clean....(why I feel like our situation is akin to a dirty little secret that I need to "come clean" on is the topic for another blog post, another day..)

One of "THEM" (squared!)

So here it is....We are one of "THEM" and actually, in more than one category... Not only are we one of the "long term unemployed" who Republicans consider slackers and not deserving of extended unemployment benefits (even though unemployment rates are at the highest levels since the "Great Depression") but we are also a family with a disabled son who needs health care in a society where his medical history and disability actually disqualify him for health care. But for the grace of God and President Obama's Democrats who passed much needed Health Care Reform our son is now eligible to stay on our COBRA policy even with his age and non-student status. While this sounds like we have been saved, understand this--Our COBRA premiums currently cost us over $1000 per month. This cost includes the Federal subsidy that will run out soon thereby increasing our COBRA premium to over $1500 per month. My husband is still unemployed and received notification today that his unemployment benefits have run out. (this hits especially hard on the heels of Congressional Republicans refusing to pass legislation last week extending unemployment benefits to millions of families like us).

The American Dream=Reversal of Fortune
While we consider ourselves better off financially than many other families struggling with similar issues, it does not feel great when you sit down to pay bills and know that each penny you spend comes out of your life's savings. The same savings you worked so hard for, for so many years. The same savings that was to be your retirement, your nest egg, your college funds and a million other dreams you worked towards. The American dream---work hard, take care of your family, give back to your community, care for others who are less fortunate, and in the end, take a deep breath and enjoy your twilight years reflecting on the good life you have lived, the child(ren) you have raised. Spoil the grand kids and enjoy the spoils of your labor. Each time I sit down to pay bills I see that dream slipping further and further away.
In the past 15 months, we have watched our "cash" assets drop over $40,000. Medical co-payments and prescription medications account for over $13,000 of that figure (and that was BEFORE we added in monthly COBRA premiums of $1000 a month). And don't forget...we are insured...for now. But bills come monthly, mortgage, utilities etc. and although we continue to be unemployed...there is no more unemployment.

The "Fortunate Unfortunates"
Yet, even with these numbers, we are some of the "fortunate unfortunates"(i.e. we had $40,000 in the bank to pay these expenses). For we made choices along the way that have served us well up until this point. We chose not to buy the McMansion and mortgage our lives to the hilt. Instead, we stayed in our modest home and remodeled. (And yes, part of that remodel was my dream kitchen). As a result the value of our house is currently between 3 to 4 times the outstanding mortgage....even with the downturn in real estate. That is so much better than most that we feel blessed....
We also made the choice to aggressively save as opposed to aggressively spend (which seems to have been a huge pitfall of many six figure income families in the suburbs). Therefore, we did have the recommended six month's income (and more) in liquid assets. This has served us well...at least up until this point. So now it is up to us...on our shoulders alone. But our shoulders are broad, and we are strong, resolute and resilient. We possess some of the traits and work ethics of our forefathers who founded this country. So now we are at a cross roads... While watching our life savings dwindle we have been forced, by virtue of extended unemployment and health concerns, to re-evaluate our lives and we have "come up wanting."

How Do You Plan for Your Future When You "Come Up Wanting"?

"Sometimes the universe provides you an opportunity to make a change you would not make otherwise"...so we are taking this opportunity to make some changes.

Our wants:
-A better climate to assist all three of us with various pain levels due to disability, joint replacements, arthritis, etc.
-Medical providers trained for the specific care of Marfan syndrome patients.
-Affordable housing (by comparison to the Chicago suburbs...not too difficult).
-Commuting distance to good University system should Cory recover enough to return to his pursuit of higher education.
-An economy with potential for growth with the advent of a national economic turnaround.

Sounds like we "want" a lot doesn't it? Well, we have been researching for a number of months now and are ready to move forward with this "contingency"plan. (Contingency = "what will we do if Brad does not find a job?"). While surgery is pending for Cory (July 14th), shortly thereafter we are taking a "look see" trip to the inland valley area within commuting distance of Standford, Ca. We are in the process of cleaning out our house and will have it ready to list by mid-July. Our hope is to NOT spend another winter in Chicago....not purely due to weather considerations...but in an effort to preserve as much of our remaining "nest egg" as possible which will allow us to have more options wherever we land.

Pay attention President Obama, Democrats and GOP

So here is our plan. Preserve our remaining savings, sell our house, move to a smaller community with more affordable housing. Invest in a small business, provide local jobs in our new community with benefits that will include affordable health care for employees.

As I said before our shoulders are broad, and we are strong, resolute and resilient. We accept the challenge of making the changes necessary and embrace the opportunity to follow this new path with optimism, faith and a bit of trepidation.

But we cannot do it completely alone. We need to know that if we are willing to turn our lives around 180 degrees, sell everything we have, and invest in our future (thereby investing in the future of our country) that when we get there, we will have affordable Health Care....for us, and for others. That's all we need. The rest we will do ourselves. The good old fashioned way-- like our fore-fathers, with initiative and hard work ...God willing and the creek don't rise.

Please leave me a comment. Let me know if you would like to hear more as our plan progresses.

NIH Funding

2010-05-29T14:50:00.009-05:00

RE: LEGISLATIVE ALERT - NIH FUNDING

Senator Bob Casey is circulating a sign on letter to increase funding for NIH.
See letter here.

As a parent of a young adult with Marfan sydrome I can state unequivocally that the NIH funding of research grants is a vital link propelling forward progress in medical knowledge, treatment protocol and possible cures.

The following is an excerpt from an email sent out by the National Marfan Foundation

Please see the message below from Senator Bob Casey's (D-PA) staff regarding the Senate sign-on letter requesting $35 billion for the NIH in FY 2011. In addition to Senator Casey, current signatories include Senators Charles Schumer (D-NY), Debbie Stabenow (D-MI), Russ Feingold (D-WI), and Daniel Akaka (D-HI).

The National Institutes of Health will face a "crunch" in fiscal 2011 when a two-year allotment of $10.4 billion in stimulus funding for research runs out, NIH director Francis Collins told House appropriators ... at a hearing on the agency's budget. "There is no question that if you measure what happens in terms of success rates - that is, what's the chance that an investigator who sends a grant into NIH is going to actually get funded - that is going to be a tough number in FY '11," said Collins, making his first appearance as NIH director before the House Appropriations Subcommittee on Labor, Health and Human Services, and Education.

NIH grants not only fund critical research: they also create jobs for researchers, lab assistants, and others. The NIH has estimated that the ARRA funds will create or retain 50,000 jobs, and Families USA estimates that every $1 of NIH funding results in more than $2 in additional business activity and economic output. Without sustained investment in the NIH, future generations of researchers will seek other work, instead of constantly competing for grants to fund their research.

Please contact your Senators and ask them to participate by signing this letter.
The deadline for senators to sign the letter is Thursday, June 3rd.
If you need information on how to contact your Senators click here.

A link to the National Marfan Foundation can be found in left side column under the heading "All Things Marfan."

Saving Healthcare Reform

2010-03-08T19:35:00.008-06:00

How we can Save Health Care Reform:

IMPORTANT POINT TO DEMOCRATS:
People come from all over the world NOT for our Health Care, THEY COME FOR OUR DOCTORS who are the best in their fields, Worldwide.

What we are missing in this version of HCR is the public option.
Well here is a plan.
Pass this bill and then tweak it. There are over 40 million people that need affordable health care. Those in that group who are disabled already qualify for Medicare. So they are getting public option care already.

It seems to me that a good number of people needing affordable health care are not ill. They are young graduates, out of work after college with bills to pay and no one to hire them. They can not stay on parents policy, yet they can not find a job that has benefits. Another segment of the population that would benefit from a public option are be entrepreneurs. Entrepreneur/small business owners who can not afford to insure their employees (let alone themselves and their family) without one of the spouses working somewhere with good benefits. But that particular American dream is fast becoming history.

We are talking about a pool of 43 million and I don't buy that they are all sick. If there were an affordable public health care option, then more people would be able to start small businesses without the fear of going broke due to medical costs. Has the news not been saying that to save the economy, we have to spur small businesses growth? Wouldn't having a public option available to small businesses give them another option for insurance. And don't choices in insurance mean competition. And isn't competition good for keeping costs down?

Oh - but there is no public option so where will it come from?

OK, in plain language THERE is a PUBLIC OPTION DELIVERY AND PROCESS SYSTEM already in place--
Medicare is so sacrosanct that the Republicans do not want it touched. OK but there are plenty of revisions to Medicare (truly a bipartisan agreement) that need to be done.
Do the Medicare reforms and make the program more efficient and effective. Run it like an insurance companies would, but instead of lining the pockets of board members and stockholders with profits, pour them back into making the system even better and more efficient. Give the insurance companies competition and give the US citizens choice! Choice between Aetna, BCBS or USA.

Using an already existing "delivery system" means efficiency and not "re-inventing the wheel".

Pass Health Care Reform and then tweak it. Tweak it to the new, streamlined and efficient Medicare: the true public option (that already has an existing infrastructure and delivery system).

BTW If you pass HCR and the groups I have mentioned(college grads, entremprenuers, small business owners, chronically ill) are positively affected and there is growth in the economy--you won't have to worry about re-election.

And wait there is more:

Use the new efficient and prosperous MEDICARE for all Government employees. That's their health care plan. Or they can buy private individual policies from insurance companies. Oh Gosh. Would that make MEDICARE the single largest one payer provider in the US? Maybe. And who likes efficient large, single payee groups? Well hospitals and doctors. The very same doctors people come from all over the world to see. More providers will join the list as Medicare providers (considering it would be the largest "single payer" to PROVIDERS). And with competition,MEDICARE would be able to pay Physicians fairly and competitively.

Make the already existing system more efficient, effective and economical. Start phasing people in as suggested in the current HCR Bill with one major addition: The first group to be able to "buy in" should also include the chronically ill. Some have private insurance thru spouses or parents, but many chronically ill fall between the gap that would cover someone in college and the ability to get it on their own after college.

Use the majority that you have now to pass HCR.
And the stronger majority you will get subsequently to tweak HCR.

Put the US back in USA. Listen to the people.

No Name Calling, No Tea,

No looking over your shoulder,

For our children
and beyond

2010-03-07T16:57:00.021-06:00

A message from Stephanie Parkinson

February 19, 2010

Dear Family and Friends,

February is National Marfan Awareness Month.

Our son Cory was diagnosed with Marfan syndrome at the age of 16 while attending Downers Grove South High school. While at Downers Grove South, Cory excelled not only academically, but musically as well, garnering 7 IMEA State Composition Awards, several National and Community Awards and representing DGS in the All-State Honors Choir.
After graduating DGS with honors in 2008 Cory was proud to attend The University of Michigan School of Music as a Music Composition Major. Unfortunately, during the spring semester of 2009 he was forced to withdraw from the University of Michigan due to health complications of Marfan syndrome. He is currently residing in Downers Grove, receiving available treatment for his condition and hopes to return to the University of Michigan in the future. The above picture is Cory playing the piano in the atrium of the Mayo Clinic during the 2009 National Marfan Conference.

Since Cory graduated from DGS, I have been an active volunteer for the National Marfan Foundation www.marfan.org and have been working to increase awareness & education, providing online and local support to Marfan patients and their families.

In honor of National Marfan Awareness Month I am hosting a three part Fundraiser to benefit the National Marfan Foundation:
1) A letter writing campaign for family and friends asking for a contribution*
2) An online campaign via email/Blogging/Facebook/Twitter requesting donations*
3) A Spring Floral Design Program/Fundraiser hosted by Heritage House Florist in Downers Grove on March 11, 2010.

Please consider making a donation* to the National Marfan Foundation
Donations* can be made online by visiting:
http://www.firstgiving.com/stephanieparkinson

*Any donations made prior to March 30th, 2010 automatically enters you in a drawing for a FABULOUS gift package which includes a CD of original compositions and vocal performances by Cory Parkinson, a CD by Chicago Indie artist TEAMROCKIT an NMF T-shirt, hand created heart jewelry and many other wonderful surprises. Random drawing will be held on April 1, 2010.

Thank you in advance for any level of participation in support of this worthy cause!

If you have any questions, please contact me at stefpark@aol.com

Information about Marfan syndrome and the National Marfan Foundation can be found at
www.marfan.org

Time is NOW to Speak Out on Health Care Reform

2010-03-05T10:21:00.022-06:00

I consider myself a health care reform advocate. It is a deeply personal issue to me and my family. I am also informed. I owe it to myself and my family and future generations to keep informed be researching the facts and rising above the rhetoric. There are several individuals and organizations I feel are also fighting the uphill battle of keeping informed and spreading the current news on HCR. I will be posting links to those sites at the bottom of this post.

THE NUMBER ONE THING I WOULD LIKE YOU TO CONSIDER:

What is happening now in YOUR government, of the PEOPLE and FOR THE PEOPLE is historic and YOU can make a difference. Please do not sit idle. PLEASE MAKE NOISE.
It is apparent from the past few months of bickering and partisanship that the majority of our elected leaders are not doing what is best for WE, THE PEOPLE. We are at a pivotal point in HCR. It has basically come down to now or never. And P.S. I do not claim that this HCR bill is perfect. What I will say is this:
This issue is too important to our country to ignore. We need Health Care for all, and we need it now. Pass this HCR legislation. It can (and should)be tweaked later, the very same way every administration tweaks legislation and programs re: Taxes, Education, Energy,etc.

Today, President Obama is asking you to make yourself heard: Link to video:

President Obama "Make your Voices Heard NOW on Health Care Reform": http://www.youtube.com/watch?v=QtZLvFrl6qk

Other Links to help you MAKE NOISE.

How to Contact your Senator or Congressman

Senate: http://www.senate.gov/ (Search box top right of page)
Congress: http://www.house.gov/ (Zip code search box top left of page)

Then A) send them an email TODAY B) call them TODAY C) send them a good old fashioned letter TODAY! JUST MAKE SOME NOISE!
Let them know that the time is NOW; to step up and do the right thing.... FOR THE PEOPLE, BECAUSE HEALTH CARE REFORM IS THE RIGHT THING TO DO!

Here is an link to an article "Ten people who could decide health care reform"

http://www.politico.com/news/stories/0310/33957_Page2.html#ixzz0hK4GdThw

Please read this list. If any of your representatives are listed, it is especially important for you to contact them TODAY. Even if your representative is not listed, pick one or two (or all) on this list and email/call/contact TODAY and let them know how vitally important health care reform is, to you, and to our country.
Put politics aside, vote for an issue that will strengthen our country and allow WE THE PEOPLE to move forward and be the best we can be.

Other links On Health Care Reform:

National Small Business Association http://www.healthreformtoday.org/about.html

Video "450,000 Physicians Can't be Wrong" http://www.youtube.com/watch?v=EkGGDOp4uUg

Socialism!? Not really--definitions and facts: http://www.healthcarereformtoday.com/

Blue Cross Blue Shield KC on Board with HCR http://www.kchealthcarereform.org/

Want more information--timeline where we are and how to get involved now?
Health Care For America NOW:
http://www.healthcareforamericanow.org/site/content/steps_to_win/#2

Resources:

Advocacy for Patients with Chronic Illness http://www.advocacyforpatients.org/

@WorkWithIllness Chronic Illness Career Coach http://www.cicoach.com/about.html

As always, I welcome your comments and questions...

Rare Disease Recognition Day

2010-02-28T18:09:00.000-06:00

Today is Rare Disease Recognition Day. I am dedicating this blog post to all those who have been diagnosed with a rare disease, and their caregivers who struggle every day. As a parent of a child who has a rare disease I know what it is like. Not only to deal with illness every day, but the fact that the general public probably has no idea what it is like to live with illness and how it can affect the whole family.

Many of you know that I am an active advocate for the National Marfan Foundation and work daily to increase awareness, provide support to affected families, and work on NMF Fundraising projects. Today, instead of going down that particular path, I am going to suggest that if you would like more information about Marfan syndrome please visit www.marfan.org because today I have decided to share a story. It is a very personal story. It deeply affected me yet I somehow feel that if I share this story, it may allow those who are not touched by Marfan syndrome or some other rare disease* to understand the affect it can have on the tender hears and psyche of those who suffer….especially if they are children

My son Cory was diagnosed with Marfan syndrome in 2006 at the age of 16. In July of 2007, while attending a summer program in Music Composition at the Interlochen School of the Arts, he had an aortic dissection http://bit.ly/a5VBCo

Although this is not uncommon for Marfan syndrome, since he had been diagnosed and was under the care of a cardiologist experienced in the treatment and heart complications of Marfan syndrome, this was indeed a surprise and emergent situation. After surviving life saving surgery in Traverse City, Michigan, we brought him home to begin his recovery. Nine months later, through hard work, determination and true grit he graduated high school on time, with honors, garnering several State Composition awards along the way, as well as the National High School Choral Award. He was accepted into the University of Michigan with a major in Music Composition where he thrived for his first semester. However, as rare progressive diseases tend to change, medical complications necessitated he leave school partially through the spring semester of his freshman year. The word disappointment cannot begin to describe the torment he has felt over the last year. Each time a new semester rolls around we accept where we are right now, hope it changes in the future, and that his condition improves and stabilizes enough to return to UMich.

However this is just background information for those of you who do not know our situation. The story comes now, as we are finishing up a week of trying times.

Cory’s condition has not improved. He has pain daily. The pain is systemic and there seems to be nothing that the MD’s can “throw at it” that seems to help much. He is 20 years old and struggles with the questions that would plague anyone with a rare disease who “should be” on the cusp of adulthood, living independently, and forging forward pursuing his life dreams. He is not. He is dependant on his family, physically, financially and emotionally and struggles with the questions:

Is this the best it will ever get for me?

Will I ever be able to go back to UMich and pursue my dreams?

Will I always have to live at home and depend on Mom and Dad for everything?

Will I ever have anything that comes close to resembling a "normal" life?

While struggling with these questions, dealing with extreme and chronic pain and dealing with side effects of necessary medications he is left in a fragile and vulnerable place.

Last week he asked me if we had “any more crosses around the house like the one that was on Grandma’s casket that you gave me?” Although he is not actively practicing, he was raised Catholic and recently has developed the desire to reconnect with his Catholic roots, after years of struggling with his faith. He possesses a foundation of faith and belief, and much like many others his age, is searching to find a credo that fits. Meanwhile, he has retained a deep connection to certain religious symbols, one of them being the cross (of which he has a small collection hanging on his wall), and others being the Star of David with the Hebrew word “Shalom” beneath, Native American religious symbols (of which he feels particularly fond), his grandmother’s personal holy water font, and a good-luck Buddha. I thought for a moment and told him that I had a few rosaries but no other crosses per se. I asked him why. He struggled with the answer, but somehow communicated that he just felt a need, basically intangible but mostly instinctive, that at this moment in time, he just needed something more to hold on to. Something in which he might find a modicum of comfort to help carry him through this very painful and trying period in his life. It happened that I had to go out that afternoon so I stopped by one of my favorite antique malls where I found an old, inexpensive “charm size” cross. It was well worn, but felt so comfortable in the palm of my hand that I did not hesitate to purchase it. I brought it home to him. After having spent a painful and restless night, he was still asleep and feeling drained. I took the cross into his room and he took it in his hand, performed the ritual sign of the cross and raised it to his lips and kissed it. He whispered “thank you Mommy” and clenching the cross in his hand, rolled over to try and get some more rest.

Later this week, after a particularly difficult day, marked by extreme pain, occasional heart palpitations and an isolated incident of shooting chest pain I went in his room to check on him. It was about 1:00am and he was trying to sleep despite a pain level that made it difficult to get comfortable. In the quiet of the night I could hear his prosthetic valve emitting its rhythmic click, click, click. Something I had become accustomed to after his heart surgery in 2007 and find oddly comforting. There were countless sleepless nights during his long recovery, while we were all reeling from the enormity of the emergency surgery and just how sick he was, that I would sneak into his room and just stand there, listening for that sound, the clicking confirmation that blood was indeed pulsing through his broken heart.

This particular evening, at 1:00 am, looking at him shifting uncomfortably in bed, not quite sleeping, yet not quite awake, I sat on the side of his bed. He reached for my hand and placed it over his heart. Ever since his surgery it seemed to bring him comfort if I would just reach under his shirt and place my hand against his skin, over the scar, on top of his heart and rest it there. It brought me comfort too. Most times I would rest my hand over his heart, feeling the click, click, click, my thumb resting on the wire band beneath his skin that still holds his rib cage together and pray. I prayed hard. I prayed for his heart, so close to my palm, to heal; be stronger, make him well, at least well enough that he would able to pursue his dreams. Part time would be OK, really! I prayed that he would somehow be well enough and stable enough to gradually regain his footing reclaim his life. Many times, as I sat and prayed I would notice his breathing becoming less labored, more even and feel him relax while I willed healing energy though my hand to his hurting heart. On this particular night I gently removed my hand from his grasp and reached up under his shirt preparing to say my silent prayer while he rested. I laid my hand over his heart and “started”. He whispered “please don’t laugh at me” as he lifted up his shirt and showed me what I had already guessed. After having such a rough day, he had taped his new cross to his chest over his heart. He said “I was scared and I thought it was a good idea, that it might keep me safer.”

It does not matter, the explanation. I did not laugh. I almost cried. Such a brave man grasping for comfort and hope in such a rudimentary way. Hoping against odds and evidence to the contrary that his heart would be taken care of--by silent faith and the comfort of a cross pressing against his chest or clenching the cross in his hand

This is a very personal story. It moved me deeply at the time and it continues to move me. It was so personal, revealing a depth of vulnerability that I was privileged to share with my son in that special moment. It is for that very same reasons that I struggled just as much with the decision to share this story with all of you.

What swayed me were these thoughts:

--Today is rare disease awareness day and Cory has Marfan syndrome, among other chronic illnesses that aren’t quite so rare (fibromyalgia, diverticulitis, others…).

--In sharing this story I hope that maybe I will touch someone who has never had to manage the care of anyone with a rare disease and by doing so allow them a glimpse of the humanity behind the tag. (Whatever disease it may be.)

--To let others who are caring for, or who are dealing with a rare disease themselves, knows that there are others out there. We struggle every day. Yes we are human, we get worn out, some days are better than others, but in the end we grasp whatever modicum or glimmer of hope there is, We grasp it, we hold it in our hands and we move forward.

Online Charitable Contests REMASH: Dear Beth K.

2009-12-21T13:47:00.001-06:00

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.

A Tale of Two Cookies

2009-10-31T18:46:00.010-05:00

This is a story of two cookies. One cookie lives in Los Angeles. He is quite large at over 12 inches in diameter and decorated in frosting depicting the finest of Halloween. He is a proud cookie. As he looks around in the bakery section he sees no finer cookie. He is sure he will be bought and taken to someone's home and be a much appreciated tasty holiday pleasure.

The other cookie is from New York. He is a small cookie. This small cookie sits atop a mound of other small cookies of varying shapes that have all been similarly decorated to celebrate Halloween. The small cookie is no where near as grandiose as the large cookie but he also feels that decked out in his pumpkin finery, he and his plate-mates will also bring holiday pleasure to some family soon.

As unlikely as it seems and although they come from different coasts, both of these cookies are destined for the same family in Illinois. This family in Illinois has been having some difficulties of late so a relative from each side of their family decides to purchase them a special holiday treat and mail it to them. Both purchase their favorite treats and put them in a USPS Priority shipping box.

One day before Halloween, both surprise treats arrive at their destination
in Illinois: The proud Mega-sized decorated Cookie and the plate full of small but wonderfully decorated cookies.

But alas, upon opening the treats it is obvious that something had gone awry.
The proud large finely decorated cookie arrived at it's new home shattered. It was a crumbly mess of has-been frosting decor and small pieces of cookie that had been battered and beaten much like sea glass when it spends a decade in the ocean.

On the other hand, the small cookie perched atop the tray of other finely decorated treats arrived in perfect condition. Small but proud he sat high on the pile and accepted the oohs and aahs of pleasure at his arrival. He knew he would be a welcome holiday treat in his new home!

The difference?? Although shipped in the same box, via the same USPS:

The tray of small cookies had been thoughtfully surrounded with small Styrofoam peanuts, while the large cookie had not.

Now the moral of this story could very well be that a little bit of thought goes a long way when shipping a fragile item. HOWEVER, this is not a story about the foibles of shipping. (I think you could find many of those on EBAY if you wish!)

This is a story about thoughtful gifts to others who are having a bit of a rough time. The thankfulness and the genuine pleasure at the surprise and kindness it bespeaks. And the gratitude that our Illinois family feels for all the love and support.

Oh, and the crumbled cookie? It still tastes pretty good---especially when you put some in a bowl and cover it with milk and eat it like a bowl of chocolate chip cereal! Happy Halloween!

Thanks Aunt Lynn

Thanks Aunt Monika

2009-10-31T18:33:00.006-05:00

Optimism, Schizophrenia or Survival Skill?
This post was written on September 29th.

Everyday I post on Facebook, TWITTER, NMFConnect and answer countless emails. Since a goodly percentage of my contacts are either aware of my (and/or my son's) chronic illness, have their own chronic illness, or are a family member of someone with a chronic illness I receive many questions along the line of "how are you doing today?" or "how are you really feeling?". So here is the deal---when I write a status post on any of the aforementioned sites, I am telling the truth, always. So where is the problem? Well, while posting this weekend I came to the realization that since I subscribe to the philosophy of "positive thoughts, speak and action" --what I fondly refer to as ALOTBSOL (credit Monty Python--Always Look on the Bright Side of Life) that the result has been a development of a duplicitous existence--at least on the web. "Public persona" vs "personal/private persona" as it were.

The complete irony of this will not be lost on certain members of my family and very close friends who know that I grew up in a family culture that due to alcohol, ignorance and bad choices, was completely ruled by this duplicitous lifestyle. Most who knew my father, would always say what a sweet, funny, good man he was. And he was....always...in public. His "private persona" however, was much different---What most people (including all but immediate family) did not see was the angry, mean, abusive man that he was in "private". The man that actually showed glee at behavior that humiliated and demeaned. The type of behavior that should have been disavowed and prohibited by any decent husband or father.

This dual manifestation has unfortunately been his legacy to one of my brothers who continues to perpetrate the same split personality which allows him to present a public persona of decency--a model citizen, teacher, father, and until recently, loving husband. While privately, he is abusive, controlling, demeaning, spiteful and wraps it all up in a huge ribbon of rage fueled by a skewed sense of entitlement. And yes, he too is an alcoholic, however, his abusive, controlling, meanness, irrational entitlement and bursts of unprovoked rage manifested themselves at a much earlier age----way before alcohol became his best and most loyal friend.

However, I digress. This was not meant to be a bearing of the soul of my dysfunctional childhood and family. However, there is a parallel at play here, but it is a much more kinder, gentler duplicitous existence of which I have chosen to live out. As a person with a condition that causes chronic pain and fatigue I have two distinct and very real existences at play ever day. For example:

Today on my Facebook status I wrote:

Cooking up a storm this weekend in prep for Brad's surgery. Stocking the freezer with meatloaf, chicken enchiladas, meatballs and sausage. Started Friday night, and of course, in the midst of all the cooking, the kitchen sink starts leaking. Good thing we have a neighbor who is also a plumber!

Well, this is all true. Every word, every meatball! LOL. Makes me sound like a normal (albeit Type A) wife and mother spending her weekend in preparation for her spouses' surgery. However, how I really feel this weekend is: absolutely worn out, exhausted-like I am clinging on by my fingernails. Every part of my body hurts, my feet, my legs and hips, my wrists (which makes all the cooking so pleasant!!), my back, and especially my neck. In between the chicken and meatloaf yesterday I had to lie down. I did take a two hour nap--it was the only time yesterday that I was pain free: while I was sleeping.

The reality of our situation is that Brad is our healthiest family member. And he will be needing the most care over the next several weeks.. I will gladly step up and care for him, as he does for me--always. We do not have family near us, nor do we have the kind of support network here that would step in and help the way family would. That is nothing new to us, we have been through so much these past few years and have managed pretty much on our own. We have received the occasional meal from those who live near us who we consider good friends, and we are so thankful and appreciative. However, the point being, we have to do this ourselves, we know that, and we do, with ALOTBSOL and adrenaline. I CHOOSE to post positive comments and updates. I do not want to ever become the person who lets the pain and fatigue over-take her spirit. Although there are times where I am just so spent and see no relief ahead---and that CAN be discouraging. If it wasn't, there would be something seriously wrong with me. These next few weeks will not be pretty. They will be challenging. They will test my physical ability to 'keep up" in many ways. I will dig deep and find whatever reserves are hiding in the deep recesses--somewhere.

So there you are---my upbringing in a duplicitous environment has trained me well. I can feel like I've been hit by a truck and still project a positive, supportive, hopefully humorous persona. And while I profess that this is a conscious "choice" on my part--I choose to be positive. Maybe, upon examination it is actually more than that.

2009-09-06T11:14:00.010-05:00

30 Things About My Invisible Illness You May Not Know
by Stephanie Parkinson

1. The illnesses I live with are: Systemic Lupus Erythematosus (Lupus) and Fibromyalgia
2. I was diagnosed with them in the years: 1990-Lupus, 2002-Fibro
3. But I had symptoms since: 1989
4. The biggest adjustment I’ve had to make is: Giving up so MANY activities I love. Having to make either/or activity choices everyday single day.
5. Most people assume: That I am much healthier than I actually am, and that both of these conditions are treatable to the extent that allows for a "normal" daily lifestyle; that, because I CHOOSE to be upbeat and positive on a daily basis, I feel well.
6. The hardest part about mornings: When I first wake up, I try to go right back to sleep because it is the only time I do not feel pain. As I gradually awaken, the neurons in my brain start to receive the pain messages from throughout my body. During these first few moments, I assess the level of pain I will be starting this particular day with.
7. My favorite medical TV show is: Nurse Jackie--"it's a hoot!" and provides much comic relief.
8. A gadget I couldn’t live without is: My laptop. It is my link to the world--my main means of communication.
9. The hardest part about nights are: Falling asleep when I have taken the absolute maximum dosage for pain relief and I am still in incredible pain. And while I am awake and in pain, feeling such a sense of loss for things I cannot do, people I can not visit, feeling inadequate as a wife, mother, friend, sister-in-law, aunt, niece, cousin because there is so much more I would love to be able to do and can not.
10. Each day I take: 13 - 18 pills & vitamins. (No comments, please)
11. Regarding alternative treatments: I have been there, done that. Still don't rule out anything. What is most effective for me is massage therapy but since it is not covered by insurance, I am rarely able to seek treatment.
12. If I had to choose between an invisible illness or visible I would choose: Invisible. I know it is vanity but getting "cleaned up and dressed up" sometimes makes me feel good. And there are times when I am meeting new people or seeing "casual/business" acquaintances that I prefer not having my disability obvious.
13. Regarding work and employment: Miss it, wish I could pursue some of my career dreams--sometimes desperately. As an alternative, I volunteer. I give the best of my talents, education, and experience from my "previous life." I know absolutely and exactly what my strengths are and the areas of ANY volunteer organization where I can excel and make the most immediate and productive contribution. Because of my limitations, I know how to generate a great deal of organizational excellence with a high level of efficiency. As a person with a disability, I take a tremendous sense of pride in my volunteer work.
14. People would be surprised to know: The level of pain I am in. Daily, constantly, and unrelenting. And that all the medications available for my conditions only suppress the pain, never relieves it completely.
15. The hardest thing to accept about my new reality has been: Never being able to live a "fuller life". Giving up so many things, everyday, even minor things that I have to surrender.
16. Something I never thought I could do with my illness that I did was: Start a volunteer organization from ground up and after two years "graduate" to a different phase of life leaving behind a vibrant, highly organized, well trained, efficient and very effective organization that has gone on to grow and thrive.
17. The commercials about my illness: Are benign at best and mislead people to believe that there is a treatment much more effective than what is truly available.
18. Some things I really miss doing since I was diagnosed: Golf, volleyball, weekend getaways, art shows/fairs, jewelry design and other art projects.
19. It was really hard to have to give up: Golf and just basic walking/getting around.
20. A new hobby I have taken up since my diagnosis is: Volunteer Leadership and online support. Collecting Vintage jewelry.
21. If I could have one day of feeling normal again I would: Just keep moving! everywhere, doing everything with lots of walking, shopping, lunch out (of course, all of this done in the company of those I love). And end the day by hosting a huge indoor/outdoor dinner party ending with a poker game that would run way into the wee hours....mudslides included!
22. My illness has taught me: To embrace "where you are" in your life, accept the changes, make the most of what you CAN do.
23. Want to know a secret? Things people say that get under my skin:
Most Platitudes. For example: "God only gives you as much as you can handle"(give me a break--God is not sitting there doling out misery and challenges on an individual basis and keeping track! AND please do not assume that I CAN handle everything I am facing--walk in my shoes for awhile and see how YOU feel about that). or "There are so many people in the world who have it worse than you do" (you think I don't realize that! but what makes you think that their degree of suffering is supposed to make me feel better?). I actually could go on and on with with this question but won't! LOL. This will probably be a future Blog topic!
24. But I love it when people: Acknowledge that my life really does suck and that I/we have had an extraordinary amount of bad luck, challenges, tragedy, loss and pain---more than most people have in their lifetime. I love it when people say "It really does suck to be you!" because it is SO VERY TRUE and I laugh every time I hear this. And I do not hear this often enough.
25. My favorite motto, scripture, quote that gets me through tough times is:
"Sometimes the universe provides you an opportunity to make a change that you might not make otherwise" AND (from my beloved mother-in-law Alice,) "when things get really bad--that's when you have to be especially nice to each other"--I love that--we live that!
26. When someone is diagnosed I’d like to tell them: Well first of all "That Sucks" then...Take a deep breath, don't panic. Yes, your life is going to change, maybe a little, maybe a lot. With these illnesses symptoms vary quite a bit from person to person--- and they can ebb and flow. There are many wonderful people living with this condition who will be glad to share their experiences with you. If you have ANY questions at all, just ask, if I don't have the answer, I can point you in the right direction to get your answer.
27. Something that has surprised me about living with an illness is: The gratitude I felt after I acknowledged my inability to work and "keep up". I looked at the glass half full and thanked God for being able to spend more time with my family and realizing that even if I could not go-go-g0, I could still grow, contribute, learn, teach and most importantly Laugh and Love.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Make a meal and drop it off for my family. It was enough to last two days and it provided such a welcome and much needed break for my husband, who bears the brunt of household duties including meal planning and preparation.
29. I’m involved with Invisible Illness Week because: We need to increase awareness. Big Time. Recently, someone I love, had a very disturbing incident while parked in a handicap space (with placard prominently displayed). He was verbally assaulted, his access to leave was blocked and he was afraid he might be physically assaulted. All because he has an invisible disability and was dealing with an ignorant person.
30. The fact that you read this list makes me feel: Like I am increasing awareness on many levels. Less invisible, more understood and productive. If one person gains insight and compassion after reading this, I will have succeeded.

Too many People, Places and Things

2009-09-04T13:00:00.004-05:00

There has been a mushroom effect in my life as of late---yes, this is a GOOD thing. As a result I have started this blog in an attempt to gather all the wonderful people (family, friends and frienemies), places (online and on land), and things (causes, objects d'art, miscellany) here. Hopefully this will help relieve some of the everyday frantic switching from FB, aol, NMFConnect, Twitter, ---catch my drift? Honestly, I do not know if this will work. It may help a little, it may help a lot, or it could backfire and add one more place I need to maintain. And I do not have any idea how long it will take until this space reflects at least a basic "shell" of information that I envision. But I hope, more than anything, that this space will inform. The life path that has been laid in front of me as of late, although curvy, winding and muddy, has proven to harbor a treasure trove of wonderful people and web sites who are embracing "life" "living" and "giving" in a way that is both powerful and inspiring. Hopefully, while I am attempting to streamline the many "communication mediums" that threaten to spiral me into a chaotic and a frantic existence, you will meet some of these people, places and things....may they touch and inspire you, the way they have touched and inspired me.