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
Showing posts with label marfan syndrome. Show all posts
Showing posts with label marfan syndrome. Show all posts
Wednesday, August 4, 2010
Wednesday, June 30, 2010
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.
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.
Saturday, May 29, 2010
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 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."
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."
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