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.

Online Charitable Contests REMASH: Dear Beth K.

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

Dear Beth Kanter:

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

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

And to All the Naysayers:

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

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

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

And Back to the Main Topic for Today

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

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

A Tale of Two Cookies

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

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.