This is the plan

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???!

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

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

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

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

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

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

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.