In which I stand for something and face getting voted off the island.

I usually try to keep any cancer related posts on my caring bridge page but this one is a little different and I think may reach a new crowd here, one that really seems to need to be reached. Over there, it's more about me or fellow cancer warriors and well-I think we get it. And a warning-this is a bit of a snarky moment...but for a few good reasons.

Now I have to be honest real quick, about something that definitely would be better understood over there. But to be real, and honest. I'll admit this one little thing and hope that in a way you may understand. It's the color pink. Which is one of my favorite colors. More specifically the pink ribbon-the one that is used for breast cancer awareness. While all cancers suck (there's no polite way to really say that sorry), those who have been afflicted with another type understand about the pink ribbon. And how it's a bit, um, overused. In all fairness it is for a good cause. But again to be honest, because all cancers suck and are not at all discriminating in who they affect it would be nice if other cancers got the same amount of attention and support brought about like the pink ribbon does for breast cancer. I think I've seen the pink ribbon on just about any item you can think of and I imagine that everyone knows what that represents. However, unless you or someone close to you has been affected by another type of cancer, you probably have no clue what color ribbon represents each cancer. There really isn't a problem with awareness and fundraising for any cancer, it's just that all cancers need to be recognized and contributed too. I'd just love to see the great efforts of the pink ribbon for breast cancer awareness spread to other colors for other types. All people owe it to themselves to be able to recognize possible symptoms of any particular cancer. All cancers deserve to have fundraising and research and outreach. So that's my little snark about the pink ribbon.

But my irritation this week is actually in support of breast cancer awareness and particularly the efforts made by The Susan G. Komen Foundation the leaders in raising awareness, money and research for breast cancer. The foundation tries to reach as many women as possible including those that may not have insurance or a family doctor. Such as the women that may utilize Planned Parenthood for all of their health care including female care. In fact for those women, PP may be the first line of detection for those who otherwise may not be able to receive other forms of care. If you happen to be one who is against health care reform then I would say that PP is an organization that is helping reach those who may not otherwise be reached especially without health care reform. SGK donates funds to PP that are directly earmarked to be used for breast care including mammograms and other exams that could potentially catch a life threatening disease as early as possible. Makes sense to me that SGK would want to include PP in their efforts as this is all about saving lives.

However, PP is seen by some by only one thing-abortion. Some people are not able to see that there is far more good health practices available at PP including breast cancer detection and treatments than there is abortion. I'm in no way turning this into a pro-life or pro-choice argument. I only would like to point out that as I've mentioned the vast majority of the efforts at PP are for positive health care. According to the PP annual report only 3% of the services offered are abortion service. Yes, ideally that would be better at 0%, but that is not reality. If anything PP promotes ways to avoid an unintended pregnancy and potentially avoid abortions. For those that believe PP actually promotes abortions, I ask you to look at the numbers and use some critical thinking skills. The big picture here is that PP offers 97% of services again for good health related things, including cancer screening and prevention. Again SGK is the leading foundation for providing all things breast cancer related and again any money given to PP is specifically used for just that. Nothing else.

So you're probably wondering where this is all coming from? Earlier this week a blogger who's target audience is fairly large and targets women, took a stand-against the SGK foundation being advertised on her blog because they contribute money to PP who does offer abortions, a sad but legal option in our country. However, I can't reiterate it enough-the money SGK gives to PP goes towards breast health only. It does not enable more abortions to happen. End of story.

I do believe that it was this blogger's right to choose what she wants advertised or not advertised on her blog especially because I believe this blogger's ad income is now her family's sole source of income. One of the problems that I do have is that SGK is only one of many organizations that supports PP. While taking a stand against an organization who again is the leader of breast cancer support and thus helping to save many lives, there are an astounding number of companies that also support PP. Many of these companies develop and sell products that could be considered fun or even luxury items. This same blogger has decided to not boycott the companies that make these items, regularly uses and enjoys these items and by purchasing the said items obviously contributes to the overall income-some of which goes to PP. Over the past few days I have just been trying to grasp this blogger's line of thinking. Why take a stand against a foundation that's sole purpose is to help save lives but not take a stand against a company who makes photo editing programs that the said blogger admits to "utterly obsessed with editing my photographs" and publicly acknowledges the maker of her preferred editing programs as those made by a company that also supports PP financially?

I am having trouble comprehending this line of thought and action. It seems to be one of convenience at the least. At the worst it's possibly turning away the support of the many readers of the said blog and their further support of SGK. Many readers did express that this information was new to them and thanked the blogger for making them aware so that they could discontinue their support of SGK-even those who were avid supporters up until this time. What a shame! And what a disservice! Not only is that less support to a foundation that helps to save lives but also these same women may one day find themselves diagnosed with breast cancer and may feel so strongly against this foundation now that they themselves may choose to not take the help of SGK in saving their own lives or the lives of their family members.

What good can possibly come from this? I realize that speaking up and out against this will probably not put me in good favor with some. However, this has been weighing on my heart and mind for a few days. As a healthcare professional, the survivor of a blood cancer, and a woman I feel I need to speak out. As the blogger in question stated herself "If you don't stand for something, you'll fall for anything". I believe those to be very wise words and I hope that many will see this whole debacle in a new light.

And you know what? In the spirit of raising awareness, I think I may share this on my caring bridge site anyway!

Read more...

A quick thank you...

To all of you who have taken the time to read my thoughts from the earlier post and who have left comments. I encourage all of you to speak up. I do moderate comments and as long as they are not threatening or full of profanity, they will be posted. As I mentioned in a comment, we are all in this together.

I did lose a reader here or there. That was disheartening not from a financial aspect as the blog isn't monetized...but maybe they'll have a change of heart. If they just could realize that I entered a career field that is about saving lives. That is most important to me. Then to add my experience as a patient, it was really eye opening. We all have our passions and this is mine.

Currently working on my newest post...it's about bad habits that aren't so bad after all. Pretty interesting and makes me feel better about some of my own bad habits. Maybe it will help others feel better, too. I hope to have it finished tomorrow.

But for now just wanted to say thanks and that I love y'all!

Read more...

so um, health care reform, well...

There were actually some pretty fun, light-hearted blog posts that I wanted to share. I guess the big news lately, though, is the progress of healthcare reform. Since my thoughts about all things health care have been shared before, instead it seems natural to say something about it, now.

I'm going to be totally and completely honest with my thoughts. Which may be hard because I *think* I know my audience and I don't want to alienate anyone or make anyone really mad. But if I don't speak my mind because of that fear, then it will probably just keep me awake all night and I really like my sleep.

OK so in full disclosure, I didn't realize anything had happened. It seemed that any hopes for progress with reform were doomed. And feeling hopeless like I did, well I just quit keeping up with it. Logging on to Facebook today though, wow, yeah that was an experience. It was pretty 50/50 on the response. I won't go into further details about the demographics, but there *was* a couple unifying factors on who felt what way. All in all however, I decided to just not say anything. I posted a funny update about Bethany and logged right off. Said a prayer. Then promptly went outside to do something with the girls.

My thoughts didn't go too far away though. And I think I need to let them out. Not so much about health care situations, cause let's face it...I've shared enough from the medical battle grounds already and if I didn't reach you with that, then I never will. To me it's not about politics or Democrats or Obama or even Pelosi. No, to me it's about the many, many patients I've met either as I've cared for them or as I was treated along side of them. Those people. Which for the most part are just like me...and you.

It was me, it is still me. And many others. I have Medicare now, which is "government healthcare". Well, actually it's my secondary insurance. I have a private insurance as my primary. For as long as they choose to cover me. I learned the hard way that you can in fact be fully insured with a reputable major medical policy. You can pay your premiums on time, every time. Starting off being healthy and then having a catastrophe. Ya know, the kind that "won't ever happen to me". Right.

Try having a *pre-authorized emergency medical admission* complete with heart surgery only to have the claim denied for no.good.reason. It was pre-authorized! That means the insurance company was brought the details of my case, established that it was in fact an emergency and needed to be treated at a tertiary care hospital, and approved it. Then took it back. Leaving me with a bill bigger than my mortgage. Unfixable through appeals.

You don't think that could happen to you? Neither did I. But at the least, I got treated. Way too many, way too damn many, don't get treated. You want to talk about "life" as an issue? Just think about that!

I've rambled on and on about all the other problems that patients have run into on this blog. They run the gamut. Not sure if I ever shared the problems that healthcare facilities have. But think about it this way...if an insurance company reneges on an obligation to pay a large amount of money for treatment, money they can't drain from an unemployed, disabled, sick person...who do you think pays that facility? And I'm not talking about bums who don't work, I'm talking about the person who went to their full-time job one day and found themselves in the hospital the next. Well, everyone does! Have you ever seen the cost of a single dose of Tylenol at the hospital?

Over the past year or so I've paid attention to the comments people make about health care reform. So many are insured through great major medical policies. Their concern? "Well now I may lose what I have!" Um, wow. If you feel this way, let me ask you...do you think it's possible that you may have a false sense of security? And my word, where is the compassion for your fellow humans? Good people...like you?!

The other one that bugs me, "God help us". Hello! God is IN CONTROL ALWAYS. I'll admit to a few "God help us" though, like for example when we started a preemptive war when we already had one war going on. Way to spread our troops thin when they need to be strong. "But they had WMD's-we know it!". Just like some claim to know all about death squads who want to kill off our senior citizens. "Just look! It's on page um, page um, it's right here, no not there, wait maybe here, no. Well, hmm...it's here. Somewhere!" Right.

Sorry for the rant. But. Please. The system is broken. Do I know how to fix it? Nope. But atleast someone's willing to try. I'm sure to have some people "UNFOLLOW!" after this. I hope you don't, really. Though we may have different views does not mean I don't appreciate your friendship, because I do. I appreciate you. I care about you. But for anyone who feels led to dump me after this...I sure as heck hope you are going to decline Medicare when you retire or become disabled and are eligible for it. If you feel that strongly against the government's help and all...

One last thing, and then I promise I'll go back to the fun stuff. I even have a contest planned! President Obama? Yes he is our President. He deserves the same respect that any President past or future deserves. But, for the love, he is a man. Created by God. And that's all I'm going to say about that!

Read more...

Reconnecting with a friend who made me her "hero"!

Growing up I lived in Ohio. I would spend about a month of every summer vacation with my Grandma and Grandpa Roger who lived several hours from us. As a kid it seemed like it took forever to get there. Though the drive was definitely worth it-I loved visiting my grandparents!

One of the perks of visiting was spending time with their neighbors including, Tammy, who was my age. I absolutely had a blast with her! She was one of my favorite friends. I wished that we lived closer and could have been able to see each other more than once, sometimes twice a year.

When I was 10 we moved to Florida and my grandparents did as well. Sadly, I didn't get to visit my awesome friend anymore and we lost touch. That is until a few months ago when we reconnected on Facebook after 25 years! As a side note, I am so thankful for Facebook. I have reconnected with so many people from all the different times of my life and places I've lived. I am also connected to people that I know now, too. It's really a great thing!

Since I had just recently reconnected with Tammy, she didn't know about my experience with Non-Hodgkin's Lymphoma. I was really surprised when I saw that she was participating in The Leukemia and Lymphoma Society's Team in Training. It's a charity sports training program that has raised a lot of funds to support various aspects of the blood cancers leukemia, lymphoma and myeloma. Click here on *Team in Training* to learn more about the program.

I told her that I had fought NHL, thanked her for participating in such a great cause and that I would be making a donation. She was shocked to hear about my experience and asked me to be her "hero", the person she is running for. That is such an honor for me!

Please check out *Tammy's fundraising page* and consider making a donation to help her reach her goal. All donations go to a great cause dedicated to funding blood cancer research and providing education and patient services.

Thanks!

Read more...

stuck.

because i don't think of politics all the time nor do i keep up with the political world all the time, the potential impact of ted kennedy's death never occurred to me. i feel silly admitting that. it just never occurred to me. what was in my mind was that it was a sad event and the end of an era. that's it. and really i only know of the concept of that era. i'm not old enough to have been around in the days of the kennedy prominence and greatness. i do remember when JFK Jr. died, it occurred while kelley was being born. i also remember when jackie onassis died, which now means more to me as she died of non-hodgkin's lymphoma. so even though i'm not old enough to know the legacy, the legacy has found it's way into my life in ways that i will never forget. so again, ted kennedy's death touched me and i thought no further.

that is until he was replaced. i don't need to explain why this stands out as important. you already know. now i realize the full impact. it upsets me, however, i can do nothing about it. except think and share my thoughts, as i've done before on the subject of health care. health care. it's something that i can't get away from. i've left the career field but the experiences and knowledge remain with me. the good, the bad, the people, the business, the inner workings. all of it...stuck. then the personal experience, being on the other end. having a diagnosis that will remain with me forever and will go on my permanent record. even if the disease is gone, it leaves it's mark physically, mentally, and again on my permanent record. all of it...stuck.

i woke up the other night with such strong feelings that i needed to pray for our country. the people in charge. the people, like me, who are not in charge. not knowing exactly why i was called to prayer. but i prayed. after that i was restless, i was thinking about politics. health care reform. and how it's inevitably and likely going to be...stuck. i wasn't able to fall back to sleep.

since then i've wondered why do i care so much? i am not one of the uninsured. i have private insurance and medicare. i've heard so many voices against reform, so they don't care unless it changes. i've heard that people who don't have insurance are not in need, they simply don't want it. if only those people knew what i know...but they'd never listen. so why do i care? are there actually people in our country who would desperately give to be insured but can't be? yes, there are. and so i guess that is why i care.

i've seen uninsured people denied care and they've died. i've seen people fall through the cracks and they've died. i've seen insured people lose their insurance because they got sick and they've died. but i guess that doesn't matter to so many who think things are just fine. things are just fine for me too. but i also know that my private insurance can dump me at any point because i got sick. it happens and there's nothing to stop them. i'd likely never get insurance coverage again because i have a pre-existing condition...on my permanent record. fortunately i still would have my coverage with medicare. the government run insurance program. the same one that most people gladly accept when they reach retirement age. even if they don't believe in government health programs. that's so ironic to me.

some have said that they don't want their great private insurance to change or cost more money, even if it meant everyone could be covered, and that is why they are against health care reform. wow. and i'm the one losing sleep. but i bet they don't realize how easily that great insurance could be lost. and how impossible it could be to find new insurance. people get sick. all the time. i've met enough people to know that non-hodgkin's lymphoma does not discriminate and it's considered a rare cancer. with each day everyone ages and the odds are really against us when it comes to becoming ill. heck, you don't even have to be sick to become uninsurable...i just found out that babies who are born prematurely get that put on their permanent record. yep, being a preemie can be considered a pre-existing condition.

so i ask myself why do i care? maybe it's the nurse experience. or maybe it's the cancer experience. or maybe it's just the bleeding heart liberal ways i have. whatever the reason, i care. not just about myself or just about my family or even just about the people i know, but for the unknown too. i try to rationalize my way out of caring and i realize i can't, i'm stuck. and with the passing of ted kennedy, any possibility of a feasible, realistic and workable way to health care reform is likely stuck too. am i the only one who cares? does this bother any one else?

Read more...

a health care misconception or even a cliche'

ya know some things have become so cliche'. a non health care related example-how many times have you heard about the person in front of someone at the grocery store who pays with food stamps and has nothing but junk food, or they buy groceries with the food stamps and seperately pay cash for beer, or my all time favorite...the food stamp offender *always* leaves the store and loads their stuff into a fancy, expensive vehicle (usually it's an escalade or something)?! now in all of my trips to the grocery store, i have never witnessed these things and especially not the escalade part. maybe i'm not paying attention. i'm not saying these things never happen but really is it possible that it has become just a bit of a cliche'? the scary thing is that these types of things become "facts" to people.

there is a misconception i hear about health care all.the.time. so much so that it's rather cliche'. but i have to tell you that the following is not exactly true! now i have no source to quote and can only use my experience as an RN who worked in utilization review and case management as well as my experience as a cancer patient. with that i think i have a pretty good grasp on things.

uninsured people (often times with some descriptive term like lazy) can go to any ER in america and get their care for free! the ER has an obligation! and of course the rest of us (descriptive term hard-working) get to foot the bill! yes this is true! the ER is a catch all. ever wonder why the staff is grumpy? well because they've become hardened as they see way too many non-emergencies walk through their doors. people who are walking through the parking lot just fine, maybe laughing and the moment they enter through the ER doors they are doubled over, can't walk, groaning. people who come to the ER for a pregnancy test instead of just buying one at the pharmacy (heck you can even get them at the dollar store and they are about the most sensitive and reliable out there). or they come in with some ailment that could and should be treated at a doctor's office like a urinary tract infection. the person suffering some affliction for three weeks and suddenly decides to pop on in to get it checked out. throw in some drug seekers and those that arrive at the end of a rousing weekend seeking a doctor's note to miss work on monday. now i have to add on a personal note that the staff should not be grumpy, it's unprofessional-but these are good causes. and yes this is all pretty cliche'.

now on to the misconception and why i feel the need to speak up. the ER is a catch all but it is not a cure all. and for those who go uninsured because they feel that they will always have a back up plan-think again. your life may depend on it. i will share a true story of a patient that was well known at our hospital. no names or extremely personal info to respect HIPAA. and if you think you know this person-you don't.

this 20 something year old man was sick and unable to work. his wife's employer family insurance policy and those available privately were more than they could afford on only one income. however, she made too much money to qualify for medicaid.

he came to our ER with a "symptom" and that "symptom" was our obligation to treat. he had an infection, was admitted to the hospital and received IV antibiotics. the infection was cleared and he was sent home. again he came to our ER with a "symptom" this time being intractable pain. he was admitted, his pain was managed and brought to a controlled level and then he was sent home.

the important thing to note is what caused the "symptoms". it was cancer. this was also why he was unable to work. and this is where the cliche' or misconception comes into play. the ER/hospital was obligated to treat the "symptom" that brought him in. however, the hospital is NOT obligated to treat the underlying cause if there is one. in this man's case the underlying cause was cancer which nobody treated because there was no obligation. see why the catch all ER is not the cure all?

the admitting doctor wrote orders for this man's hospital care which included oncology consults. being a rural hospital with only two oncologists on staff who were partners of the same practice, the choices were limited. the oncologists had an obligation to assess the patient, which they did. and upon knowledge of his lack of payer source they refused, yes refused(!)to take him on as a patient. and that is completely ok and apparently legal. at some point as a nurse, case manager and human being-i would think that someone should have felt some sort of obligation to treat this young man, husband and father. if not for any reason other than an act of kindness and because it was simply the right thing to do. even as a charity case. we all went round and round. the admitting doctor ended up in a tear filled yelling match with the oncologists. we the nurses of case management called every single, possible agency for some sort of help for this man which failed and we were tear filled as well. truly words can not describe the weight of our failure for this very sick and kind man.

in the end, he received symptomatic care only. never one drop of chemotherapy or any other cancer killing agent. and as you have likely guessed this man died.

by sharing this story i don't know what i'm trying to accomplish. maybe to dispel a misconception? make it less of a cliche'? encourage those who can obtain health insurance but choose against it to change their minds? encourage everyone to believe in and speak up for health coverage that is obtainable for everyone? or maybe even save a life? that one life lost was one too many. but i am fairly certain that there are many, many others out there who have faced or are facing similar circumstances.

Read more...

ramblings from a healthcare advocate

i'm sure that many of you have noticed that my passion in all things "political" is healthcare. recently i was involved a conversation about healthcare being a "right" vs. a "privilege". i know that lots of people view quality healthcare as a privilege. but to me i feel it should be a right. maybe it falls under "life, liberty and the pursuit of happiness" from the declaration of independence. the inalienable rights of man. unfortunately this is just an opinion and not one i can make changes with.

being a nurse and a patient has allowed me to see both sides of the healthcare situation. and i certainly think there is a problem. maybe it's me, but i can't bear knowing a person is sick, in pain, and not able to get the treatment they need. as a whole i think our doctors are pretty good. but remember that in every graduating class of doctors, someone was at the bottom of every class. i definitely think that if you have an illness it behooves you to learn as much as you can about it. more than once have i had to lead my own doctors in a direction to help me. and i do think very highly of them. i've also encountered doctors that aren't so great. as i'm sure a lot of you have too.

as for insurance companies? to me they are a gamble...if you have insurance the company is gambling on you not becoming ill. if you don't have insurance you are gambling on not becoming ill. it's a shame that some premiums are so expensive. i can see where people may not be able to afford a major medical policy. one job i had offered a policy that would have cost $1400 a month for family coverage. of course i couldn't afford that. fortunately i was able to find a policy on my own. but even that was not cheap plus it had very high deductibles, no copay system. it was only helpful in the event of a catastrophic situation. during my catastrophic illness, i had a policy with a well known company which served me well at times and not so well at other times. i've had to fight and fight to get things covered, to get medications i need, etc. i haven't won all of the battles. but some i have.

i guess the point of this isn't so much about the political fight going on about healthcare reform is it? my advice as a nurse and patient is this...be your own advocate. fight for yourself! i have seen a friend-a fellow nurse and lymphoma patient-who would no longer be with us if she had not stood up and taken charge of her own care. thankfully she knew that she could do that and right now she's in complete remission!

some strongly believe that our politicians have no place in our healthcare. me? i'm not really sure where i stand. i do know we have a problem that needs to be fixed. but who should fix it? as for politicians, don't we elect them to serve us? it seems to me that fixing our broken system is a way that they could serve us. i do agree with many who feel that they should not be making our personal healthcare decisions for us. only we should be making those decisions. to me it is two entirely seperate issues... making business changes that will allow access to quality healthcare for everyone and those leaders making personal healthcare decisions for us.

please feel free to share your thoughts with me. is healthcare a right or a privilege? do you think we need to make changes to the system? who do you think should be making those changes?

Read more...

a few facts about healthcare coverage-obama style

i've been reading blogs tonight and i keep reading something that is causing me to have this funny eye twitch. so i thought i would share some information (credits to chris for putting this together).

As Barack Obama has stated all throughout his campaign, if you are happy with your current insurance coverage, either your individual plan or through your employer, you can stay with it. Those who are not satisfied will have the option of buying into the same health care plan that government employees enjoy. One of the major breakthroughs will be the fact that an insurance company can no longer deny your coverage and/or charge you outrageous premiums.

I feel I need to highlight that our new president elect, Barack Obama, has not proposed a National Health Care plan that is solely run by the government. In fact his plan:

~ Requires insurance companies to cover pre-existing conditions so all Americans regardless of their health status or history can get comprehensive benefits at fair and stable premiums.

~ Creates a new Small Business Health Tax Credit to help small businesses provide affordable health insurance to their employees.

~ Lowers costs for businesses by covering a portion of the catastrophic health costs they pay in return for lower premiums for employees.

~ Prevents insurers from overcharging doctors for their malpractice insurance and invest in proven strategies to reduce preventable medical errors.

~ Makes employer contributions more fair by requiring large employers that do not offer coverage or make a meaningful contribution to the cost of quality health coverage for their employees to contribute a percentage of payroll toward the costs of their employees health care.

~ Establish a National Health Insurance Exchange with a range of private insurance options as well as a new public plan based on benefits available to members of Congress that will allow individuals and small businesses to buy affordable health coverage.

~ Ensures everyone who needs it will receive a tax credit for their premiums.

Read more...

comedy break!

jon stewart is the best!

Read more...