VA Secretary’s Comparison to Disneyland Is A Gift

And we’ll squander this gift on just the statement and not the ongoing problem with veterans care and benefits.

Take a look around you. (I will too, we’re in this together) How many veterans do we see? How do we know that person we see living on the street is not a veteran. How do we know that woman or man in front of us at the grocery store using her EBT card, is not a veteran?

Of course we Americans will say we support our veterans. How many of us give our time to visit veterans in the long term stay ward of the VA hospital? I don’t. Some of us do visit during the Christmas season, so we can click on our Facebook profile from 2013 and say: Look at this veteran I visited in the long-term ward of the veterans hospital. AND it’s a girl veteran. (True story.) I’m not talking about people who actually visit veterans and stay in the room long enough to have a meaningful conversation.

My point is, caring for The American Veteran is an idea, or wish by the American people and that’s about it. Not because we are all a**holes, but because maybe we are working hard to make ends meet and taking care of our families. The only time some of us may have to see the news, is the 30 minutes before Colbert and can barely stay awake for that.

I’m glad the VA secretary compared veterans wait times to waiting in line at Disneyland. Thank you, Mr. Secretary for a great conversation starter. Of course, journalists, pundits and viewers will squander this wonderful opportunity to discuss what’s going on with the Veterans Healthcare System, and argue over the comparison. Here is where I depart from we. If you’re focusing on the comparison only, you are part of the problem. There is something to his remark, and it can be an opportunity to do something about it. Look at the voting records of our presidential and congressional candidates. Use the anger or offense you may feel to take a look at the problem. We can keep changing the secretary and nothing will change, except the name that follows the word, secretary. I have been visiting Disneyland for over forty years and in the VA Healthcare System for twenty. This is a conversation. So, what can the we do about this besides buy more car magnets and complain?

My Letter to Congress to Urge Funds for Scleroderma Research

Picture of the White House

This is just one thing I did this morning, which took about 10 minutes. Okay- probably 20, I’m a slow typist.

Here was the reply I received in my email. I omitted personal information to post to this blog, like my address, etc…

To get started now, click HERE

Here is the response I received and a copy of my letter:

Your Letter to the President and Congress

 

Karen, thanks for taking action on behalf of Petition2Congress. Your messages are on the way.

 

An individual copy of your letter will be sent to each official:

 

August 7, 2013

 

Dear President Obama,

Dear Representative Lowenthal,

Dear Senator Boxer,

Dear Senator Feinstein,

I was diagnosed with scleroderma at age 23 by the Veteran’s Hospital in Madison Wisconsin after having symptoms in the Navy. I am still here because I had access to healthcare and treatment I often had to fight a male-centric healthcare system. The VA has improved the treatment  f female veterans exponentially. However, there are many patients who are not getting the proper diagnosis and treatment I was able to receive. This need to change. It starts with research, and we have lots of work to do. You will be hearing more from me at TheMightyTurtle.com & a page I started to introduce the possibility of surviving scleroderma: Unstoppable Me: https://www.facebook.com/pages/Unstoppable-Me-Karen-Vasquez/217918321693555

 

Loma Linda VA is overcrowded, like many VA’s across the country. I recently relocated to be closer to a VA that could help me manage my care in Long Beach, California. Not every patient has the luxury to be able to move where there is not only a great medical facility, but family and friends nearby.

 

One thing I have learned and has been found in research, is that many diseases have similar symptoms and research of other diseases has led to effective treatment of different diseases. For example, I also have sarcoidosis. I was diagnosed in 2007 after fighting doctors to do further tests to determine my symptoms were not just scleroderma. After my diagnosis of sarcoidosis, I was prescribed Remicade, normally a treatment for rheumatoid arthritis. My symptoms are now under control and I appear to be in remission with medication. I also take viagra 4 times a day, which was originally designed for infants with pulmonary arterial hypertension. I was the very first female at the Loma Linda VA to be dispensed Viagra. Getting Viagra did not come without a fight and months of waiting. Many patients do not have time to wait for approval and are dying as a result.

 

I urge you help. People are dying simply because they lack money and resources.

 

Thank you,

 

Karen Vasquez

 

And now, the formatted letter:

 

Congress, please support this Petition by directing the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the National Institutes of Health to expand research related to scleroderma, development and evaluation of new treatments, research on the relationship between scleroderma and secondary conditions including: pulmonary hypertension, gastroparesis, Raynaud’s phenomenon, and Sjögren’s syndrome. Establishment of family and “childhood-onset” patient registries. Support for the training of new investigators. Direct the Centers for Disease Control and Prevention to establish a scleroderma public awareness campaign highlighting disease symptoms, prevalence, related conditions, and the importance of early diagnosis.

 

This Petition is very important to patients and family members living with Scleroderma. Thank you in advance for your consideration of this Petition.

 

Sincerely,

 

Ms. Karen Vasquez

Long Beach, Ca

 

You can still also have your letters printed and hand-delivered to each official for just $3 each.

 

Thanks again for taking action, and keep this email for your records.

 

Also, be sure to visit http://www.petition2congress.com/ for more important action items.

 

 

 

Help Spread the Call-to-Action: Tweet This

 

What’s The Point?

Detour sign

Will it really make a difference if we get scleroderma to trend June 3?

Let’s start with more questions.  Because isn’t the journey what it’s all about?  No?
Well how about this:  It’s what Yoda would do.

Don’t worry, Young Jedi.  As always, there is an option to skip to the end.  What is most important, is that you get the point.  I’ll never know you didn’t read it all.  I just want to relay a message and I hope that you share it.   (Scroll down to where the “Detour” sign was supposed to be.)  

I ask myself this type of question often:  Will it really make a difference if I write about scleroderma or any disease?

I don’t have thousands of followers.  If you look at my Twitter numbers, I follow more people, than those who follow me.  I follow patients, doctors, caregivers, foundations and celebrities, and I don’t care about my numbers.  I follow because I hope that someone may see something useful, and pass it on to someone else.  Does that make a difference?

If I judged what I do based on my numbers, I would have given up long ago.  Let’s face it.  I am not market driven.  And no matter how much I scramble to cover things like education or  travel expenses- or not, depending on what’s in the bank- I can’t see the rationale behind starting a non-profit.  Why?  So I can create yet another community that probably charges for access to information?  No, there are plenty of online communities that provide free access, information, and doing a wonderful job.  Plus, I like the idea of being able to have access to these communities.  It makes more sense to be a part of what’s going on instead of isolating ideas and people.  Plus, if I see a problem with a community, I can support those I know to be legitimate.  People are creating empires based on the suffering of others.  We can all work together, without membership fees, because most patients can’t afford them, and there are lots of donors who can.  We just have to get the word out to let them know we are here.

Who are “we”?

Well, we don’t have a catchy title like “cancer” after our unrecognizable names.  Yeah, I said it.  We need a cure for cancer.  We need access to care for all patients with cancer.  We have the capabilities, yet people STILL have to walk, raise money and rally around families to be able to afford treatment of cancer.  Does anyone else see the problem with this?  The problem is not only cancer.  The problem is that patients STILL have to fight and raise money to PAY for cancer treatment.  That’s the problem.  Cancer has brought the level of care higher for all long term chronic illnesses.  Yes, the problem is there is no cure.  And an even bigger problem is later detection because of financial reasons.  Raise your hand if you know someone who had/has cancer and it was detected at a later stage because of lack of insurance.    We all know someone, don’t we?  And with all the walks and bracelets that read “BOOBIES”, people are still dying of breast cancer.

Everyone has heard of cancer.

That doesn’t mean we should have to fight each other to get research funds, but we do.  We fight with ads, bracelets, publicity, made for TV movies and fundraisers.  Let’s face it, it’s working.  We have come a long way with cancer research.  And research for cancer has led the way for long term care, hospice care and cosmetic surgery.  Mastectomies and reconstruction is now covered by insurance.  So, if you have insurance, you have a chance.  A fighting chance.

Don’t abandon cancer.  Just add awareness of other conditions.

Scleroderma has been referred to as a “niche disease”.  Not as many people get scleroderma as cancer.  On the surface, that’s true, but there are many different types of cancer.  Scleroderma is an autoimmune disease.  And there are many types of autoimmune diseases.  How many?  Well, that depends on who you ask.  I know of one so-called activist who told me, she has fibromyalgia, but chooses to focus on her lupus because she felt that fibromyalgia wasn’t a “real” disease.  But you know what?  What if that’s just what I thought she said.  What if I just mentioned that to angry up your blood to move you to activism?  Or what if I had a non-profit and I said that to move you to donate?

Is it a mind game, or is it real?

When I first had the symptoms of scleroderma, I was told I was an “Hysterical female”.  And yes, that was real.  Like many patients with a chronic illness with no visible symptoms, I too asked myself: Is this real?

You know what I also wonder?  What if I didn’t have veteran’s benefits?  If the disease didn’t kill me first, I probably would have died in childbirth.    Every day I find a Facebook status about some fighting for their healthcare.  That’s right, fighting for care for their own illness.

Not to mention by the time most are diagnosed with a chronic illness, they have lost their income, and are fighting for benefits they paid into because assholes like Rush Limbaugh insist on calling things like Social Security and Medicare, “entitlement programs”.  Yes, people like me who have worked since age 15, or raised a family and want to live on the government teet, near poverty.   Look, every system has it’s abusers.  There is always a way to cheat the system – any system.  So, let’s make it so people won’t die because they have to choose between medicine and food.  People do it every day.  I am not one of them and I am one of the lucky ones.  That’s because I am a veteran.  If I had been diagnosed with scleroderma before I entered the Navy, I would have been tossed out before boot camp  relying  on Social Security and living with family.  But, you know what, I would have been dead by now.

But Karen, you don’t know you would be dead without veteran’s benefits.

But I do.  I have the luxury of walking into any Veteran’s Hospital ER and getting treated for what I have, because I was given 100% service connected disability rating in 1996.  Not now, while there is a 2 year backlog.  In fact, if I have a grave emergency, I don’t have to go all the way to the nearest veteran’s hospital.  I can go into any emergency room and get the care I need and bill the VA.  Sure, it’s a mess of paperwork, but if I am in grave danger, it’s covered.

My initial onset of symptoms was numbness and tingling in my hands.  I was smoker in my early 20’s, so I would have written it off and cut down, or quit and then just write it off as normal.  Who knows how long I would have waited to receive care.  You know,I have gone on long enough.  My onset of symptoms is for a whole other post.

 

Okay, if you skipped to the end:

Why make scleroderma trend?  Let’s do something that costs NOTHING.  No membership fees, no advertising costs or Facebook ads.  Let’s do what the Kardashians do, and go viral.  Let’s make our voices heard by yelling something most people have never even heard of.  Let’s make our voices heard without scary pictures, frightening phrases or braclets that cost $1.00 plus shipping and handling.  Let’s break all the rules Monday, June 3rd.  If you are at work, you will probably be in front of a computer anyway, or looking to kill some time on your phone.  Let’s do this with corny phrases, pictures of walks or those we love who were lost.  Use dirty jokes.  Someone out there has the creativity to use scleroderma in The Aristocrats, I just know it!  Yes, yes I did just link to a Bob Saget Video.  I hate it when guys say there are going to call you, then don’t.  It’s okay.  I ruin The Aristocrats or piss my pants trying to tell it. (A whole other post)

Scleroderma is not fun.  Awareness is not fun either.  Sure, events around awareness are fun like walks or gatherings, but when I am made acutely aware of scleroderma by a new complication, that is not fun.  Or when I am reminded by my curled hands getting injured, or when someone asks, “What happened to your hand?” I look around the room,  before I realize I have a large bandage on my hand, because I am so “aware”, I forget there is something wrong.

I’ll add more updates before the big day we make scleroderma trend.  Right now, I need you to help me get the message out so we can do this.  Please share information about June 3rd.  Let’s set the trend, all of Us.

For more:

Watch the Bob Saget Video. Watch it to the end.  The eye socket chat is worth it.  Not for the kids!

Want to make a tax deductible donation? Find a non-profit that does patient education and research, or doesn’t charge a membership fee to access information.

Want to do some shopping?  Go to my online store.  None of it is tax deductible.

 

Don’t Hate The Playa, Hate The Game.

Then Set Aside Your Anger & Get to Work.

 

 

  In a place called, Wisconsin...

 

I was “awarded” a rating of 100% service connected disability.  See, I was “lucky” enough to have symptoms of scleroderma while on active duty in The Navy.

Early in my diagnosis back in 1994, and through the years despite my times of  inappropriate coping, I received the best possible care.  I broke the “rules” to get it.   In 2007, I was diagnosed with sarcoidosis after 14 years of symptoms that were confused with scleroderma symptoms, thanks to my persistence and the listening ears of my rheumatologist  and pulmonologist at UCLA medical center.  We owned a business at the time, and I was in charge of insurance benefits.  Of course, we had the best insurance money could buy for our employees (before we went out of business) and I used that insurance to see specialists recommended by my rheumtologist at the VA Hospital, who had no idea how to proceed with my treatment.

One lucky day, my rheumatologist asked, “Do yo have insurance?” and he referred me to colleague he now collaborates with to keep me alive and active.     Of course, it took some time.  I met the specialist at UCLA in 2005 and got my sarcoidosis diagnosis in 2007 after frequent  shleps from Murrieta to Los Angeles.  Once I got the biopsy that showed I had sarcoidosis, my rheumatologist prescribed Remicade infusions in addition to Methotrexate.  Long story short, after some time, the lymph nodes in my chest shrank, and it became easier to breathe.

Now, I enjoy Remicade every eight weeks at the VA Hospital.  And here’s where I broke the rules:  For my diagnosis, Remicade is number three in medication formulary.  If I had received my first treatment at the VA I would have had to fail Humira and one more IV drug before being given Remicade.  My rheumatologist at UCLA knew from my medical history and his experience with autoimmune diseases that Remicade was best for me.  So, how did I slip that by the paper pushers?  Golden Insurance.

My first infusion did need approval, because like the VA, other drugs were less expensive and Remicade was not the first choice of health insurance administrators.

Now, don’t go vilifying insurance administrators.  Like many Americans, they are probably overworked and underpaid.  And remember they have health insurance in their title.  Their job is to work on  behalf of a for-profit company.  Sure, an insurance company might give them cute names, like “customer care representatives”, throw words like “advocate” in their job title; but they are paid by the insurance company.  They are human and have responsibilities, they are not “the bad guy”.  They just need information.  And because like me, you or someone you know might have one or two chronic illness diagnoses that no one’s ever heard of and there is a lot of new information out there.  Of course there are crappy doctors, but you will find many doctors who are willing to help you advocate for yourself.  To get what you need, it’s just a matter of getting the right information to those who write the checks.

If – no, WHEN you find a doctor out there who will talk about non-formulary drugs that might work for you, or if you ask they will offer the name of non-formulary drugs to advocate getting, you need to get to advocatin’.   You may need to make sure the insurance company gets the information from the doctor to the insurance company .  This means opening up lines of communication between insurance administrators or “customer care representatives”.  (Really, all they are is an agent of the “guy” with the gold.  Remember, he who has the gold, makes the rules…)  This means yelling and screaming exactly what you think of them is not the right course of action. Don’t panic if you have already done this.  You just yelled at someone, so apologize and try to reopen communication.  I speak from experience on this one.  I have yelled at my share of “guys” who know THE guy.  And an apology is a nice way to open the door to communicate and get this person exactly what they need to get The Guy to part with his gold on your behalf.

You know what sucks the most about all of what I just said?   After all that work, most patients still don’t get what they need because of high copays.  I’ll get to that later.   See, I have the luxury of universal healthcare from the Veteran’s Administration.  It’s no picnic, but I have no copays and they can never deny me care,ever for any reason, until I’m dead. Which has turned out to be a lot longer than they thought…    

Yes, I know you have paid The Guy, but The Guy made some pretty tricky rules to make it so there is “gold”.  Look, its easy to get mad at the system.  But anger is time you are wasting when you could be making phone calls or faxing documents.  Yes, it sucks.  But don’t hate the playa, hate the game,  then set your hate aside and get to work.  Your life depends on it.

So, how did I manage to get non-formulary treatment?  My doctor submitted the documentation needed to show the insurance company that the best course of treatment was Remicade.  So, I got my first few infusions using my Golden Insurance.  Then, our company went under.   I disagree with my ex-husband it was The Golden Insurance that did us in.  It was, after all 2008 and everyone was going out of business.  So, we lost our insurance and I headed back to VA healthcare.

Back at the VA, my doctors there were working with my rheumatologist and other specialists at UCLA: Also known as: Continuity of Care. I was being treated with Remicade, but that was third in line in the formulary.  How did we squeak this one by?  Funny you should ask…

See if a patient is doing well on a medication, it is unethical to change the course of treatment.  Now, not every doctor honors this.  Again, don’t hate the playa, hate the game; then set aside your anger and get to work.  If your doctor tries to switch you, it’s going to be a fight.  Get used to it.  I know it sucks.  Life is unfair, but we do what we have to.  Don’t worry, you’ll make “don’t hate the playa” your mantra soon enough.

So back to our story…  So, my rheumatologist at the VA saw how well I was doing on Remicade plus Viagara (The same fight happened with Viagra as well).  It took some time.  I got approval for the Remciade first, then eventually, Viagra was approved.  I kicked open the door for Viagra at my local VA Hospital for women.  It’s considered a recreational drug for men.  And I did have to bring my medical records to my doctors at the VA from UCLA.  I still do.  What a nice happy ending, right?

You know what I hate most about my happy ending?  That patients who could benefit from the same meds I get, cannot get them because they have to deal with copays.  See, when I had The Golden Insurance, I could afford copays and when the business tanked, bankruptcy took care of the loose ends.  But as a 100% service connected veteran, my care and medication is covered 100% for everything.  EVERYTHING.  I pay no copays.  So I have access to Viagra and Remicade and Nexium .  Also non-formulary.   Yeah, like I said; kickin’ down doors.

Now, you may be thinking, but a copay is a fraction of the cost, right?  Right.  But in 2009, Viagra was $6.00 per pill.  And one Remicade infusion cost… It’s going to be legen-wait for it… $22,000.00 per infusion..dary.

 

Now, imagine yourself with no VA Healthcare or Golden Insurance.  Maybe you have a kid or two and recently find yourself collecting an “entitlement” check of $1037.00 per month, plus $537.00 per kid.  Living on such a “lavish salary” does’t leave much room for rent, food, clothing, school supplies for the kids and maybe there;s a birthday coming up for one of your little ones.   Do you see where I am going with this?  How many chronic ill and disabled parents have foregone their own medication to feed and house their own children?  (This is the part where I get sick.)

In 1996, I went into a patient advocate’s office and asked if my benefits were some kind of mistake.  See, I was given a pension and healthcare.  I didn’t feel that sick.

The advocate told me that I was entitled to these benefits.  That I had served my country and earned them.  She told me my that my prognosis was not good and I would need them.  I walked out of her office feeling not-so-entitled, but understood that I could not work and earn enough money to pay insurance to keep health benefits.  I had no idea that people who were not veterans, got a whole lot less and did not have 100% health coverage.  Yes, I even have dental.

So, I’m not sure where to go from here, but I’m starting something.   I am in some kind of remission-esque stable condition.  Scleroderma and sarcoidosis are both progressive diseases and the meds are only slowing it down.  But, I’m feeling good.  I;m no longer a hot mess with a blog.  I’m an active patient who’s going to go out and show the world that treatment of symptoms with the right meds does work.  That it’s not a waste of money to do research and make sure patients have access to care and treatment.

And so it begins, a fact finding mission.  Healthcare for all:  The Final Frontier.

Did you see how I started off all Star Wars then finished with Star Trek?  I know you felt that Jedi Mind Meld.

Other people have tried it.  There are programs set to go in place in 2014.  But there are people who can’t wait that long.  And starting another non-profit seems nuts when there are so many that need funding.  So, I’m going to go out in the world and figure this out.  I’m feeling good. I’ll have my bad days.  More than anything, scleroderma and sarcoidosis have taught me that I am mortal.  I plan to live a long time, but I have very little say in how long that really is.  I could mistake rat poison for Skinny & Sweet.  Because,  “It looks like Skinny & Sweet… except for the scull and crossbones.”  I couldn’t find a clip from the movie 9 to 5 for the younglings   So here is Honeybadger narrating the hummingbird.  Holy shit!  They’re fast…