Testing

Just wanted to see if I can post to my blog by using an e-mail :)

Hugs

Anke Smith
raca040404@me.com
www.raca-smith-family.blogspot.com
www.cureJM.org

On this thought .... ;)

Uh, light bulb moment again!

I just realized that according to the far right (Tea Party, Romney and Ryan) I am choosing the wrong kind of friends!

I should be choosing friends that are rich and affluent, so when those medical bills come in I can make a request through e-mail, Facebook and Twitter that I need Donations to help me pay the bills.
I finally saw that this is how some of my Republican Friends are paying for their medical bills and then of course they don't see the need for Obama Care or better Health care. Why worry about something you have covered ;)

My big, no HUGE! mistake is that I pick friends that have huge hearts, are compassionate and supportive and are loyal but just don't have much money to share.

Goodness, where and how could I have gone so wrong???

Seems to me that the loyal, compassionate and supportive ones I love are not wealthy. DARN! DARN! DARN!

However if you know me you know I have a huge smile on my face right now because I would not trade them in the world and even thought some of you are able to pay your bills easily due to Donations (as I actually was told to do by a person named Rick Santorum, who?) then I am happy but also sad for you as you are missing the point completely. Do you honestly don't see that the reason you are out and about asking for Donations tells the whole world that your health care coverage sucks????

I am lucky we have the coverage we have and Connor is in the best hands that 'money' can buy but I am also still aware that not all have this same options and choices.
Just because you found a way to make your world work don't shut out the rest!

Oh, and you might notice I didn't even mention those horrid 47% of free loaders out there that are just robbing the Government. No wonder there is no money left to hand out for Connor. 

Rant complete!
Thank You for checking in.

Hugs,

R A C A

Found this after I wrote my last entry and it is part of what worries me!

OP-ED COLUMNIST

Death by Ideology

By PAUL KRUGMAN

Published: October 14, 2012 760 Comments

• 
• PRINT
• REPRINTS
• 

Mitt Romney doesn’t see dead people. But that’s only because he doesn’t want to see them; if he did, he’d have to acknowledge the ugly reality of what will happen if he and Paul Ryan get their way on health care.

Fred R. Conrad/The New York Times

Paul Krugman

Go to Columnist Page »

Blog: The Conscience of a Liberal

Related in Opinion

Nicholas D. Kristof: A Possibly Fatal Mistake (October 12, 2012)

• Times Topic: United States Elections

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Last week, speaking to The Columbus Dispatch, Mr. Romney declared that nobody in America dies because he or she is uninsured: “We don’t have people that become ill, who die in their apartment because they don’t have insurance.” This followed on an earlier remark by Mr. Romney — echoing an infamous statement by none other than George W. Bush — in which he insisted that emergency rooms provide essential health care to the uninsured.

These are remarkable statements. They clearly demonstrate that Mr. Romney has no idea what life (and death) are like for those less fortunate than himself.

Even the idea that everyone gets urgent care when needed from emergency rooms is false. Yes, hospitals are required by law to treat people in dire need, whether or not they can pay. But that care isn’t free — on the contrary, if you go to an emergency room you will be billed, and the size of that bill can be shockingly high. Some people can’t or won’t pay, but fear of huge bills can deter the uninsured from visiting the emergency room even when they should. And sometimes they die as a result.

More important, going to the emergency room when you’re very sick is no substitute for regular care, especially if you have chronic health problems. When such problems are left untreated — as they often are among uninsured Americans — a trip to the emergency room can all too easily come too late to save a life.

So the reality, to which Mr. Romney is somehow blind, is that many people in America really do die every year because they don’t have health insurance.

How many deaths are we talking about? That’s not an easy question to answer, and conservatives love to cite the handful of studies that fail to find clear evidence that insurance saves lives. The overwhelming evidence, however, is that insurance is indeed a lifesaver, and lack of insurance a killer. For example, states that expand their Medicaid coverage, and hence provide health insurance to more people, consistently show a significant drop in mortality compared with neighboring states that don’t expand coverage.

And surely the fact that the United States is the only major advanced nation without some form of universal health care is at least part of the reason life expectancy is much lower in America than in Canada or Western Europe.

So there’s no real question that lack of insurance is responsible for thousands, and probably tens of thousands, of excess deaths of Americans each year. But that’s not a fact Mr. Romney wants to admit, because he and his running mate want to repeal Obamacare and slash funding for Medicaid — actions that would take insurance away from some 45 million nonelderly Americans, causing thousands of people to suffer premature death. And their longer-term plans to convert Medicare into Vouchercare would deprive many seniors of adequate coverage, too, leading to still more unnecessary mortality.

Oh, about the voucher thing: In his debate with Vice President Biden, Mr. Ryan was actually the first one to mention vouchers, attempting to rule the term out of bounds. Indeed, it’s apparently the party line on the right that anyone using the word “voucher” to describe a health policy in which you’re given a fixed sum to apply to health insurance is a liar, not to mention a big meanie.

Among the lying liars, then, is the guy who, in 2009, described the Ryan plan as a matter of “converting Medicare into a defined contribution sort of voucher system.” Oh, wait — that was Paul Ryan himself.

And what if the vouchers — for that’s what they are — turned out not to be large enough to pay for adequate insurance? Then those who couldn’t afford to top up the vouchers sufficiently — a group that would include many, and probably most, older Americans — would be left with inadequate insurance, insurance that exposed them to severe financial hardship if they got sick, sometimes left them unable to afford crucial care, and yes, sometimes led to their early death.

So let’s be brutally honest here. The Romney-Ryan position on health care is that many millions of Americans must be denied health insurance, and millions more deprived of the security Medicare now provides, in order to save money. At the same time, of course, Mr. Romney and Mr. Ryan are proposing trillions of dollars in tax cuts for the wealthy. So a literal description of their plan is that they want to expose many Americans to financial insecurity, and let some of them die, so that a handful of already wealthy people can have a higher after-tax income.

It’s not a pretty picture — and you can see why Mr. Romney chooses not to see it.

Happy News! and some sadness on my part...

Sorry I have not been posting this sooner but on Sunday night I got two e-mails from our beloved Dr. Soep and the wonderful news are that Connor's X-Rays were in the clear! No Compression Fractures to be seen :)

This is truly a huge relief to me as we are planning our trip to Germany in just one week and I did not want this hanging over our head. Plus if he had been showing Fractures in his Spine then we would have planned on traveling with his Wheel Chair. I looked into how it would have been treated and truly it would have come down to bed rest, possibly a brace and pain medications. 

I was very sad to have missed the CureJM Conference in Baltimore this past weekend and I am happy to see on the CureJM Website and FB Page how much fun everyone had. I am hoping there were some news in regards to Research and to learn more about it in the coming weeks :)

I have been very busy trying to find information on how JDM is treated in and around Europe. I found a couple of promising write ups online that point towards very similar treatment options in Germany.
I have to tell you I am and always will be very saddened that there is no equality in treatments yet around the US and other countries. The fact that humans are not created equal or treated equal really lays heavy on my heart. I know I should let it go and be content with my place on this Earth but I just can't.
How can there be ways to make peoples lives easier or pain free, or even save life's in some Countries or States and not share this with everyone?
Why is a human life less worth if you are poor and not affluent with money?
Trust me I am NOT being critical about those that work hard and made a good living and are able to have luxuries as in vacationing, beautiful homes and cars. I am not envious to things that make your live more luxurious. All I want is equality in access to health care treatments. And if I am pushing to hard on this then I am even willing to limit it to our kids. Why punish a child who had no say so as to what family he was born into? Cancer, JDM, JA, Aids DOES NOT DISCRIMINATE ... so why do WE???

How I wish an answer to this!
So please please give me one if you have one ... I am not saying this in anger just in sadness as I really would love to know.

Hugs,

R A C A

Spine X-Ray

We got great news as Connor is scheduled to go in for his Spinal X-Ray tomorrow morning before his Water Therapy.

It will be comforting to know the outcome as we would love to know if we do indeed have to worry about compression fractures in his back or be in the clear and him having nothing but some back aches.

I will update as soon as we get the results.

Hugs,

R A C A

Catching up at School and another Surprise Trip :)

This past week went super fast and was a whirl pool of excitements :)

We were able to catch up on school and finish the Winter Semester for 2nd Grade, Connor got his last (for now - fingers crossed) Solumedrol and Methrotrexate Infusion on Friday! The day before he had his Water Therapy and the only hiccup during this week is the fact that Connor is complaining more and more about back pains and I have not been able to get in touch with Connor's Doctors about this yet. It seems that according to the JM Group, some of the kids had confirmed fractures in the Spine shown through an X-Ray while majority of the kids only got true confirmation due to an MRI.
I do not like having this hang over my head with the approaching trip to Germany hanging in the air....
I am also hitting a road block with making progress to get Connor some braces for his feet. It seems the Therapy Place is dropping the ball by not finding the prescription that Dr. Maynard had signed and now faxed to them already twice, This is frustrating as we are dealing with this now for 5 weeks :(

On a good note, the boys and I got to travel again this past weekend by organizing a surprise Birthday visit/party to my husband who was spending 8 days on call in DFW. Ron's best friend Len and I were talking via phone or txt messages and we were able to pull of a complete surprise when we knocked on the Hotel Room at the Park Inn in Irving, TX. The hardest challenge was telling my husband we would be off the phone and unable to talk due to Therapy when indeed we were on a plane and therefor unreachable ;)
After we arrived on Friday afternoon we all went out to Dinner with the Root and Lichte Family. It was fun to see everyone and spend some relaxing time together. I tried to tell Larisa to please have her Baby (due Date Oct 11) this weekend so I could be there and what happens? She gave Birth to a precious Baby Girl, Evie, last night! The original plan was for the boys and I to fly back again on Saturday Morning as Ron had to fly to San Juan for a two day trip but we changed course again when Ron talked us into staying in DFW and then heading home with him on Monday. So after Ron left for his flight, the boys and I had an amazingly fun but goodness COLD day at Six Flags over Texas with Auntie Pam. Not even the cold could stop the four of us from having lots of fun and so much laughter!!! End this Day with a nice BBQ Dinner and a Drink and it was labeled by all of us a huge success :)
On Sunday the boys and I were thrilled to spend more time with Pam as we headed to the Grapevine Mills Mall and then finishing the day with a yummy and very enjoyable dinner with Pam, her daughter Kim, husband Andy and of course Ron who had gotten back from his trip. Gosh was it wonderful holding Kim and Andy's Baby girl Kora. Just eight weeks old and cute as a button :) 

The next day we headed home and now we are trying to get back into the swing of things :)

The hardest part of heading to Texas is the amount of friends we have there and trying to divide time between all of them on each separate trip. With Ron on Reserve we will have more of these trips in the future so hoping to see all of you that we did not see on this trip :)

I admit I know why I love going places and being a gypsy at heart .... it is in a way a form of running away from everything because for those few days I am gone I can almost forget all the worries that follow me around when being at home. It is sad for me to realize that in a way home is not always a sanctuary for me and not having much control over anything that really weighs on my heart is a tough mind set for me to follow.

So I am making a conscious try to stay and remove myself from things I can't control and save my energy to work on the parts were I might actually be able to make a change in. Not an easy task for this one ;)

Thank You to the loving support for CureJM to the Makarewicz Family! The Logsdon Family! The Murphy Family! and The Bertelsen Family! Such generous hearts and Connor is now in overdrive working on his Thank You's :). I know this is the latest Fundraiser and so many of you reading this have already given so much! So Thank You as always and we do carry your support so close in our hearts!

Hugs,

R A C A

Travels Home and the last Landshark Race :)

See here is a definition on what some rate a successful travel experience and others might classify as disastrous :)

I am going with successful:
Yesterday morning the boys and I happily boarded our flight to take us home. We settled into a row of seats in the back of the plane and waited for boarding to finish.
The PA came on with the pleasant voice of the Captain, telling us that the Mechanics are looking over a problem and that he has not heard back from them yet and if he does not hear from them in the next 15 minutes he will contact them.
Connor became thirsty and was happy to receive a beverage from the very nice Flight Attendant we had on board.
Fifteen minutes went by and we were informed that the nose wheel had to be changed and that the plane will be jacked up by the landing gear and that we will receive a new wheel. 
The boys and I did not miss a beat and we pulled out the school books to work on some school papers the boys would have otherwise had to do at home.
All went well for a while until Alexander was getting irritated at the buttons on his shirt and kept messing with them. After telling him several times to stop and him getting mad and frustrated I decided to have a conversation with him in the lavatory. This was actually not as bad as it sounds as the lavatory was still as clean as it can be considering we had not left the gate yet and no other passengers have been to the back of the plane yet.
Yes, I did get some not so happy looks from passengers around us, not sure if they were not happy about Alexander and my disagreements or if they were not happy about the delay? who knows....
I attempted to actually pull of the buttons in the lavatory with no success and by then Alexander was crying as he did not want the buttons pulled off but also did not want to wear them either!!! Goodness sometimes his OCD and Button issue drives me insane!
We settled down after finally agreeing he had to wear the shirt but would not have to button the shirt (Polo Shirt so just two buttons).
We got back to the seats and were able to finish most of the school work before we were released from the gate 1 1/2 hours after departure.
Our arrival time a home was about 1 pm with enough time to start some laundry and take a little nap.
Then it was off to the final Landshark Race for the Fall Season. How Alexander managed to run is still surprising to me. Both boys have been missing sleep, a regular meal and any form of rest for about four days, but then my highly energetic boy ran his race in 11 min and 32 seconds. Over a minute behind his best time but he made it in!
The Reward was a beautiful Medal and a fun party for the whole Gateway Running Team at the local Pizza Hut. What an amazing team they made and what a great Family we all became. The boys love and look up to their Coach and we look forward to the Spring Season. This time Alexander will join the Track Team and hopes to run the 100 meters (thrills me as he will be following into my footsteps). This was one event I ruled in as a child :)
Oh, and while we hardly ever eat at Pizza Hut, those Cinnamon Sticks are amazing!!!! ;)

This month we are taking a break from Cottage School! While I will miss the companionship and Therapy from my beloved Mrs. Struble, Pippi and Alia, I know we have to take this break for several reasons and it should pay off.
Today the boys got to sleep in until 8:30 am and we started school about 9:30 am. We finished all the work we had set out to do by noon and then we had a lot of fun baking Brownies and Celebrating Alexanders Race. The boys reenacted it with a Ceremony and Cake Party. A fun and happy day at home!!! Just as I like it!!!

Hugs,

R A C A