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We are so excited about our support bracelets getting here… please contact us if you are interested in wearing your support wrist… Thank you all for your continued support, without you… we are nothing…
That makes me sound so OLD!!! Hehe… be assured… I am not… I found my self lost tonight reading all these BLOGS on CF… I have never noticed how AWESOME that is!!! I am going to get better about writing here, even if nothing really cool is happening… and I am not going to make it all about my CF either… I am going to make it about ME!!! Though my CF is part of that… it is far from most of it… Though right now, Breathe 4 Tomorrow is my number one priority, so it probably will be about that… ALOT!!!
What I wanted to share with you tonight is how amazing our CF community is and how there are SO MANY OUT THERE!!! I feel like I know alot from Myspace (www.myspace.com/breathe4tomorrow) and Facebook ( I have NO idea), but tonight I realized how many I don’t know… and how I have a passion to know more… I think that is what I love about life… Being able to meet and love new people and if even one person’s life I make easier… I have succeeded… I will end sharing a stoy with you… Today I was wearing my shirt that says “Save the World” and people laughed at reminded me numerous times that no one can “save the World” and to them I have a story (that by the way I am TOTALLY doing from memory)
One night, no, I mean day… a woman was walking down the bech picking up sand dollars and throwing them back into the water (because the tide had gone out and left 1000s of sand dollars to bask and die in the sun… )As she picked them up a man walked up to her and asked… “What are you doing? You know you are just wasting time throwing those back in you can’t possibly think you are going to save all of those sand dollars.” As they looked down the beach at where the tide had been and 1000s of sand dollars lay. The man continued, “throwing them back one at a time isn’t going to make a difference.” the woman leaned down and picked up a sand dollar, “I disagree, you see…” as she threw it into the bay… “Just made a difference to that one”.
I love the moral of that story… One family, one person, one child at a time… We will make a difference…
Much Love~ Sarah
We are still patiently waiting!!! Not so much patient at this point… The attorney we were using droppped the ball and that is why it has taken so long… So his boss called us and told me HE is taking over and going to get us our designation… so YAY!!! I just wanted to let you all know we are still here and we are going to kick it back into high gear… We have had the priviledge of helping a couple families this year and we are looking forward to helping so many more… The need is so huge at this point, and unfortunately supply and demand doesn’t apply here… In fact it is the opposite… When the demand (I prefer to call it “need”) is high the supply is low and when the supply is high and available, the need isn’t as high… SO I am turning to our CF community… please pass this along to your friends and family and have them go visit our memsaic wall…. It is so cool… You have the ability to purchase a brick and with that, you can post a picture and write a little memo in support of CF!!!
http://www.memsaic.com/app/launch.cfm?sid=08DEC7B2AEEBD1
OK, so I just wanted to update all of you out there that visit our blog… It has been a while, but I am back and ready to discuss some of the issues bothering me right now… but I am going to so that later, for now I just wanted to post an update and a “poem” that a friend of mine wrote about CF:
We have infections that cause inflammation and we have inflammation that causes infection. We use antibiotics to kill the infection just to have the antibiotics kill our livers.
We awake each morning to live another life, yet we complain as to how CF intrudes on our life. We complain about the three weeks of IV’s but people in this world do IV’s year round.
We choose to rehabilitate our lungs just so they can be trashed and replaced. We have implants to save our lives when others have implants just to make themselves prettier.
We never thought we would live this long, yet we did everything the doctors told us to. They say mapping our Genes will lead to a cure, yet genetic manipulated fruit is bad for us.
The world is 2/3 water and mostly salt…all I need is salt to make my cells well. We know things about life that people never figure out, yet everyone feels sorry for the life we live.
They say this is a disease that affects the digestive system and the lungs, but in reality it affects my friends, my family, my car, my house and myself. There are days of endless coughing and pills, but each day I choose to live for another one.
Most people go through life not konwing what their purpose is.
I know my purpose, do you?
You are all in my heart and I thank you so much for your continued kind words and inspiration and your support….
Sarah Jean
WOW!! What an experience this has been… Things are going well, we are still just patiently waiting for our 501(c)3… We have our first walk-a-thon planned for June 8th!! I can’t believe how excited we are!! It’s just hard because we have ask for donations that are not tax deductible yet and that is going to be really hard to do… So everyone say a little prayer for us… We have a band playing and a 5mile walk… around beautiful Capitol Lake… We will hopefully have fliers out soon… but of course we would like to have our sponsors set up first… and getting sponsors with no 501(c)3 is going to be hard to do… so ahhhhh…. if anyone knows any companies that would be interested in sponsorships, please contact me at 360-556-5180…
Thank you all so much for your continued support
The other day I am out riding my horse and I decide to push myself a little harder than I usually do… In my head, I wonder if it is OK to do so or if I should take it easy… After an hour of riding, breathing hard, sweating, I get off of my horse and head into the barn… My trainer, who isn’t feeling well, says she has to haro(plow) the mare pasture and I offer to do it for her… So there I am, driving the big tractor through the pasture… to me, it is so meditative… I do breathing exercises and just concentrate on my lungs and how good it feels to take deep breaths… I thank God for my health and really put myself in a great place… The whole tractor is vibrating and I get 2 hours of thankfulness along with the benefits of a vest… WOW!! But then I wonder if maybe today I had pushed myself a little too hard…
I get home, take a shower, and sit down to relax… Of course coughing just comes along with CF, but tonight, I am paying more attention to it… Then it happens, the dreaded coughing of the blood… eekkk… I HATE IT!! Even though I know that it happens and that it is normal, I HATE IT!!! So then of course, I am concentrating on it and noticing that it isn’t stopping… darn it, I did overwork my lungs today…
When I get to my boyfriends house I decide to share with him what is going on… that is always a little scary because to us (CFers) we know that a little blood in our mucus isn’t necessarily as horrible as it sounds, but to a person who is in love with us, it can be really scary… He shares with me that maybe I shouldn’t go riding tomorrow and I should just take it easy, but that is not me… I DO NOT LET MY CF LIMIT ME!!! I never have and I am not going to start now…. maybe that is good?? maybe it isn’t?? Ahhhh… Needlesstosay, I went riding the next day… hehe… it’s my downfall… I’m stubborn when it comes to my CF trying to limit me…
I need my fellow CFers opinion on this… Have you experienced this at all?? and what did you do?? Do you think I should start watching how hard I work myself?? I just don’t know if I can…
Thank you all for your help in this manner…. I appreciate it so much…
Sarah
I’m 31 and I was recently pondering an area of my life that is semi-lacking and am just wondering how other people out there feel about it… I was so lucky to have found love a few years back when that ended I found myself wondering if it had to do with my CF… I had walked in one day and Justin was sitting at our desk, as I got closer I noticed he had pulled up a website on CF and all the stats… He turned around and had tears streaming out of his eyes… I explained to him that I was healthy and that no one is guaranteed tomorrow… I told him that my CF was not going to kill me and to be honest with his past-time hobbies (Motocross, ultimate fighting, quadding) that I should be more worried than he should… He assured me that it wasn’t a big deal and that he loved me and my CF was not going to play a part in it… As time went on and we found ourselves engaged and talking about children… He was tested to see if he carried any of the CF genes and it came back he didn’t… We were so ecstatic about the news… A few months later we were over with no real reason why… He would swear it had nothing to do with my CF, but it is the only logical reason I can explain how a relationship like ours would just be over…
This was not the first time something like that had happened, it was just different because it appeared that my CF wasn’t going to play a part in our relationship… A few times in the past I have had relationships that have seemed to have ended because of the CF and the fear that comes along with being in love with someone with a possible life threatening disease… I think that men with CF may have an easier time finding a gf/wife that is OK with it because women have the need to take care of someone, so it works out better in that case, I think… That is just my opinion though and I am SO curious what you think about the subject… Has anyone else out there found that once their CF is mentioned, that the relationship changes…
Little Reece Thompson is a sweet angel and has probably indured more in his 5 years than most will in a lifetime… He has been hospitalized numerous times in the last couple of years and once again is on his way to UNC, Chapel Hill. His doctor has done bronchs, CT scans & a perfusion scans to find out he has NO function in the left lung. She thinks it staying in there will just make Reece sicker & seed infection into the right lung. (which has a function of 64%) They have decided that removing his left lung is the best option. Thats why they are going to UNC, to give the doctors a chance to meet Reece andexamine his scans and then meet him for themselves. They will do a bronch at that time and if they think they need to, they will remove his little lung right then & there.
The Thompson Family has turned to Breathe 4 Tomorrrow needing alittle help with some of the travel fees. They will be 4 hours from home and have no set schedule when they will be returning. The expenses between gas, food, lodging and other life expenses add up and we would love help their family. We are still in the beginning stages and unfortunately don’t have the funds right now. So we have put together a little fundraiser to help the family. Although we have not received our 501(c) 3, so your donations are not tax deducable, any help will be greatly appreciated by the family. Please visit our website at www.breathe4tomorrow.org and click on the “Donate” button to leave a donation, if you don’t have a paypal account, you can send checks or go into any Bank of Americaand donate that way as well. 100% of all donations received between now and January 29th will go directly to the Thompson family.
Thank you so much for your time~
Sarah
I came across this today on myspace and just want to share it with everyone… It is amazing to me and makes me SO ANGRY, but what can you do? Write your local congress person. Make sure you are reading what the candidate you are voting for stands for and believes… It is so sad to me that people make money off of the sick and this is just another article that proves that… PLEASE LEAVE A COMMENT!! Let’s make a difference… this is an example of how our foundation will be helping people… we would like to be able to pick up where insurance leaves off, though, let’s face it… the real problem, the drug manufacturing companies combined with the insurance companies… dangerous combination…
Thank you once again for your time
Sarah Jean
Body: This was in the NY times about CF & insurance issues. Please, read! This WILL take your breathe away. By: Steve Lopez, NY TimesI was on my way to the Encino home of a 10-year-old boy named Preston, but I could have gone in any direction for the same kind of story.Ever since I wrote a few years ago about a San Gabriel Valley woman who had breast cancer and couldn’t get health insurance (her family resorted to a yard sale to pay her medical bills), I’ve gotten a steady trickle of similar tales. Last week, I had one involving an oncologist whose cancer treatment is not being covered because his health insurance company says his illness is a pre-existing condition.Preston doesn’t have cancer, but he was born with cystic fibrosis. And the cost of the medicine that keeps him breathing just shot up like a rocket, thanks to an insurance company decision I’m still trying to decipher.
I’ll get to the details in a moment, but first, some political context.
The last place to expect a workable healthcare reform proposal is in a presidential campaign, and this one will be no exception in the end. There’s way too much money riding on keeping things as they are.
Here in California, Gov. Arnold Schwarzenegger and Assembly Speaker Fabian Nuñez would have you believe they stepped into the leadership void with last month’s health insurance-for-all proposal.
But all they’ve done is come up with a shaky idea to require nearly everyone to buy medical insurance from the same companies we’ve all become so fed up with. Employers and hospitals would have to pick up part of the tab, and there might be a new tax on cigarettes to provide some support. But even if the vague and dubious funding proposals come to pass, there would be little or nothing in the way of additional controls on insurance companies in terms of what they cover or what they charge.
State Sen. Sheila Kuehl, one of the legislature’s strongest advocates of healthcare reform, eviscerated the Schwarzenegger-Nuñez package in a Dec. 17 analysis you can read on her website ( www.dist23.casen.). She said if it came to pass, and insurance companies were forced to take on everyone who is now uninsured, premiums for the rest of us would balloon.
“And it seems to me that they will probably have to resort to more and more denials of care,” said Kuehl. Her single-payer proposal would take insurance companies and their profit machines out of the equation, but it has languished for all the predictable reasons, including the huge influence of the insurance lobby.
I began telling Kuehl about Preston and his family’s issues with their insurer, but halfway through I stopped myself, figuring she’s heard hundreds of similar stories.
“No,” she said. “It’s in the thousands.”
Preston, a cute, curly-haired lad with bright blue eyes, leads a relatively normal life, albeit with strict dietary restrictions and 20 pills a day. He showed me how he straps on a percussive vest twice daily. The vest is attached to a pump, and forced air makes it vibrate roughly, loosening the congestion in his lungs. That and an inhaled medication called Pulmozyme keep him breathing.
But last month, the cost of that Pulmozyme blasted through the ozone.
It had been running them $30 a month.
Suddenly it was $784.
“They never called,” Marla, who takes care of Preston and 5-year-old Tyler, said of Blue Cross.
“They never talked to our doctor,” said Jeff, a self-employed financial investor.
With no warning, the insurance company decided to pick up less of the cost, leaving Preston’s family to come up with an extra $9,000 a year for his medicine.
If a cheaper generic were available, they’d gladly switch. But they said there is no substitute for Pulmozyme, an enzyme-based medication that controls mucus secretions and was developed specifically for cystic fibrosis patients. Their doctor confirmed this.
“It was a big surprise,” Eithne Maclaughlin, of Childrens Hospital Los Angeles, said of the sudden price inflation. “And it’s very upsetting.”
Maclaughlin said several of her patients had been hit with the same spike in their co-pay cost.
“They’ve got you by the neck,” she said of any insurance company that jacks up the cost of breathing freely. “It’s all about money, let’s face it.”
At the Cystic Fibrosis Foundation, Laurie Fink said the trend was not limited to Pulmozyme, or to Blue Cross. A poll by the foundation found that 21% of people with cystic fibrosis have skipped doses of medicine to keep costs down and 13% have delayed seeking treatment for the same reason.
In Preston’s case, Maclaughlin cut his dosage back to see if he did OK on that regimen, which would save a big chunk of money for his parents.
Preston’s dad was not flatly contemptuous of Blue Cross, which he said has been a life saver for the family. (Not that their premiums are cheap, at $1,200 a month, even with big deductibles.) He also granted that Pulmozyme is extremely expensive — the real cost of the medication is about $1,500 monthly in his son’s case, and Blue Cross had been picking up the bulk of the bill.
Hoping for an explanation, and reconsideration, Preston’s parents filed a grievance. Blue Cross quickly rejected it.
“Pulmozyme is no longer a Formulary medication,” said the virtually incomprehensible letter, which gallingly suggested the increase was part of Blue Cross’ commitment to providing its customers “the best possible care and access to medications.”
Preston’s parents are appealing the rejection to the state Department of Managed Health Care, which said it would have a ruling this month.
As I understand it, formulary drugs are essentially drugs a health plan recommends as effective yet less expensive alternatives to non-formulary drugs. Think generic versus non-generic. But in the case of Pulmozyme, a cheaper imitation does not exist.
When I asked Blue Cross for an explanation, I got this by e-mail:
“As with other health plans, the decision to add or remove a drug from the formulary is done through a review committee made up of medical experts. At Blue Cross, this group is the Pharmacy and Therapeutic committee. Pulmozyme is currently considered a specialty medication and is covered for our members, but at a higher member share of the cost than other medications. The goal of these ongoing reviews is to assure access to all necessary drugs while also keeping costs as affordable as possible for all of our members.”
Takes your breath away, doesn’t it?
Here at B4T, we are trying to promote a positive attitude amongst those of us with Cystic Fibrosis. We really want to make a place that people with a positive attitude about their CF can come and share about their outlooks. Through this we have had the opportunity to meet some really amazing people. Two of them have created a website and I want to share it with any and everybody. So please go check them out and let me know what you think of their website:
Thank you for stopping by!!!
I’m sitting here tonight and I am trying to ponder the idea of how our government makes money off sick children. It makes me absolutely heartbroken. I want to know what our government is doing to help cure our disease. I feel like such a conspiracy theorist when I think the way I am thinking tonight. I feel like they make so much money off of us being sick, so why would they cure CF? I hope with all my heart that that is not the reality of it, but I just want to know if anyone else out there feels like that? Nothing surprises me from our government anymore. It seems like we have all of these medications to subside the problems, I feel like it is time to find the cure…
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