I’m still in the process of transferring posts to The Mighty Turtle’s new home on Blogger.  Please enjoy this drawing I stole from Google images, then head on over to the “new” site.

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Moving…

By Karen | Filed in Sarcoidosis, Scleroderma

I’m making another change.  I am moving back to blogger.  Eventually, TheMightyTurtle.com will go straight to the new address.  I plan to post to a temporary address on blogger,  while creating the archives from this address.  Thank you in advance for your patience during this move.  

I promise this won’t hurt a bit.   There will be no mess of epic proportions during this move.

Boxes, a bike and various household items scattered in what looks like a messy move

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Man ding trick on a pogo stick

Last year, James Roumeliotis, founder of Bounce to a Cure made it into the Guinness Book Of World Records for The farthest Distance Traveled on a Pogo Stick.  Watch this inspiring video with highlights from James’ Journey through Pogopalooza’s Park at The OC Fair in Costa Mesa.

This year, James will attempt to break another world record at Pogopalooza 10 in New York.  I will be cheering him on from California and sharing about his progress.  Please visit and like Bounce to a Cure’s Facebook page & like and if you are twitter, you can find him @BouncetoaCure.  He is using his talent to help scleroderma patients by raising awareness and funds for scleroderma research, for the Scleroderma Research Foundation.

I admire James and I am so honored to be working with him to help spread the word!

Visit his website, Bounce to a Cure.  He’s working with some partners you might recognize.  I don’t want to give too much away, but you may see a turtle there…

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Memorial Day 2013

By Karen | Filed in Veteran's Corner
What started as a Facebook status for Memorial Day, turned into something that I felt need more that just Facebook “status”.

Remember that “Supporting The Troops” means that we remember they are the very strongest of the “We The People”. That “WE” never be thought of as a “necessary casualty” without profound consideration of the consequences of putting “We” in harm’s way.

Remember that those who serve, take an oath to make the ultimate sacrifice and that by connection, those who risk losing them, silently take that oath as well. Willing or not.

Gravestones with flags planted on them for memorial day.

Remember the chaos when they return home. We must do better than empty promises and talking points.

Remember to never send any of “We”, into harm’s way without everything they foreseeable need.

Here are some things we can agree to pledge, if we believe this nation is “Under God”, or not:

Pledge that before we put those in harms way, that we have resources before they go, that would never force them to fight when they return.

Pledge to never again put those who serve in harm’s way, with talking points and patriotic phrases. If any reason to send others can fit on a bumper sticker, we need to get back to work.

Pledge to never forget things that were said, like, “Gas will be practically free, if we invade.” ANY country. We cannot forget that. We must remember, so it is never repeated.

This Memorial Day, remember our “Troops” are not just talking points, buzz words and bumper stickers. Let’s honor the fallen, by thinking before we act.  Always.

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Votre Vu & Me.

By Karen | Filed in Product Reviews & Amazon Store

As I have mentioned,  I want tax-deductable donations to go to research and organizations.  So, I have becme a Brand Ambassadr for Votre Vu to cover expenses like fees for events and travel.  Sure, I guess I could fundraise, but I also want to drive a nicer car someday if things go really well with Votre Vu.

 

Maybe I’m too honest.

I have been looking for  a product I feel confident about sharing with fellow patients, friends and family.  Votre Vu is it.  So, I can work to cover expenses of my volunteer work and if things go really well, get a nicer car and sleep well at night.

Thank you for reading my shameless plug.

You can find my Votre Vu Facebook page Here

On Twitter Here

And shop online Here

Thank you!

This is my avatar on Twitter. Is it just me, or does my head look enormous in this picture?

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Surprise! I have toes!

By Karen | Filed in Current Events

I have been attending Krav Maga consistently and something happened tonight.

You know that “Soldier Crawl”?   I had modified it using my forearms and knees.  Today,  I was crawling, and quite naturally, my toes took over for my knees.  It felt natural, and surprised me.  It only happened twice, but it happened.   I did the “soldier’s crawl” as it was supposed to be done,  for a few moments.

This is kind of how I felt when realized my footing was getting better.

 

I tell myself every day that if I keep moving, my range of motion will come back.  I know it will never be what it was before, but there is potential and now realistic hope my range will improve.

I had another revelation: My toes are not useless.  They’re just fused and different, but they are not lost.

I’m encouraged, exhausted and sore.   The good kind of sore.

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All my travel, education and maintenance for The Mighty Turtle, is covered by me.  I seek no sponsors, because when someone writes a check, there is an obligation of loyalty for their support.  That’s something I put upon myself, but hey, I like sleeping at night.

Here’s why I don’t seek sponsors:  I am free to say what I want.  I can support, or not support any non-profit I wish based on my perspective as a patient.  I can make jokes that are more adult than PG-13.  I did consider becoming a non-profit, but I want all tax deductible donations to go to research and eduction by existing non-profits doing outstanding work.  I just do not see a point in the wasted expense of  corporate fees for my silly blog.  The thing is, I’m not just a blog.  I volunteer my time and I attend education events.  These things cost money.  I am “lucky” enough to have disability benefits from the Veteran’s Administration and access to world class healthcare, but I’d like to attend fundraiser to show those who contribute that people can lead productive lives once symptoms are under control.  I am in a remission-esque state.  My prognosis is good and I’m feeling good.

I have had a lot of kindness bestowed upon me by people I have never met in person, who send well wishes, prayers and thoughts.  I have also met many who do not have access to health care.  Good people fighting for disability benefits, and vilified by the media and neighbors for seeking help while fighting for their lives.  And once they get help, they are “awarded” a pittance that is gobbled up by medication copays, food and rent.  And while they live on these benefits, they endue ridicule from people who think they don’t deserve it.  It’s not that there is a majority of douce nozzles who vilify the sick, poor and elderly.  There certainly is an abundance of douche nozzles, but it has been my experience that they are the minority.  Douche nozzles just yell the loudest, so they are the ones being heard.  I want to change that.

The thing about being an activist is, in order to go places and do things, I require money to get to events.  Some activists are lucky to be self sufficient.  Some work a full time job and do activism in their off time.  Some have benefactors or sponsors to help their work.  My problem was, I needed funds to go places and do things to further my mission, but I did not feel comfortable asking for donations or working for a non-profit. I am also in no condition to hold down a full time job.  If I need to rest, I need to be able to rest and recover. Now, I have a solution.

Yesterday, I became a Brand Ambassador or sales rep for Votre Vu.  Everyone has skin, it’s a product line I can stand behind and feel comfortable recommending to others.   I get to use my unique set of skills as a manicurist and beauty school drop out.  Sure, yoga pants and novelty t-shirts are a staple in my closet, but I know skin care.  Working as a Brand Ambassador for Votre Vu will help with expenses to get out, and show the world that high quality health care and the right treatment; not most cost effective treatment, saves lives.

So, in order to get my business going, I have started a Facebook page and Twitter.  This way, I can raise awareness without a bunch of “words from my sponsor” mixing my business with my activism. Yes, they will mingle like chocolate and peanut butter at times, but I will do my best not to make it a regular thing.  

Today,  I am writing about it to grow my business- of course, but I want to make clear my mission: Raising awareness and assisting non-profits without compensation.  I don’t want to be compensated by non-profits because it allows me to work with any non-profit I wish.  I play nice in “The Sandbox” with everyone who is working for cures and making information freely available.  I have the freedom of not competing for funds.  Non-profits have to work to get research and education funds from donors.  I want to help.

So, I’ve taken this post and rambled about my plans.  Thanks for reading.  Please “like” and “follow” where applicable.  And if you have an occasion for a gift or would like to try some great skin care, please keep my Votre Vu store in mind.

Now, back to our regularly scheduled program…

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Feeling Square Peg-ish…

By Karen | Filed in Sarcoidosis, Scleroderma

 

 

At 42, I still feel like a square peg. Come on, you remember the show about Carrie before Sex in the City. I’m no Carrie. Actually, I’m more an Amanda because as I have been told by one or more dates that I am too analytical. I disagree. If I was truly analytical, I would have looked up the correct use of “too” in that last sentence. Maybe that’s the wrong use of analytical. Maybe I’m just plain sloppy. What were we talking about? Oh, right, I’m a square peg. I had nachos earlier though, and I feel more round than anything right now.

 

Two girls from the cast of 80's TV show, Square Pegs.

SJP before Sex in the City. I related more to Square Pegs.

 

I was feeling square peg-ish because I read other blogs and had problems relating. I kind of wondered that maybe I’m just a bit bitchy, but then I realized I enjoyed reading the stories of others. No, wait I didn’t enjoy reading: I loved reading about the good, the bad and finding hope – sometimes not find hope, but just being.   We all have different events, but share the same feelings of grief, loss and hope, from different victories and milestones.

 

Maybe what I failed to realize before I started writing this was that these three paragraphs may have taken up five minutes, you, the reader will never get back. Then, I thought if it took a person five minutes to read this, my syntax and grammar must be horrible, but my content is just interesting enough to keep you reading. And that like me, maybe you feel like a square peg too. Maybe we are all square pegs who are not so unique and alone, but because we feel like it, we remain isolated.

 

I think I just confused myself. What were we talking about? Oh, right: Sex in the City.

 

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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…   

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I Feel The Need to Read…

By Karen | Filed in Sarcoidosis, Scleroderma
M Vitale Hair

It’s been a long time since my diagnosis. So much has happened since 1994.  We have some so far with research and awareness, yet it still feels like I’m stuck in the mud in Alabama like a mash-up between the movies Ground Hog Day and My Cousin Vinnie.

I have decided to sit out the Health Activist Writer’s Month Challenge, and read as many blog posts of those who do write, as I possibly can.  There are some great voices out there and I really want to take the time to hear what they have to say.  I feel like I haven’t been as active as I can be in the health activist community.  And not everyone can or even wants to write, so I am going to participate by reading and cheering on bloggers and encouraging others to read by sharing what inspires me.

I am not the only person with scleroderma, sarcoidosis or any chronic illness to have something to say.  There is a time for everyone with a voice to speak out.  There is also a time to listen.  This is my time to listen.  I just want to fall in love with some more bloggers. I have read and shared several posts this month already and I am starting to feel inspired by these new and not-so-new voices.

So, there will be posts here, but please visit Wego Health or search #HAWMC on Twitter and read some great blogs.  Don’t just read what I share.  I can’t possibly read them all and if you find posts that inspire you, I hope you will share. We don’t all need to blog, but we all need to encourage  those who do.  So, show your support and if you haven’t already liked Wego on Face Book or are following them on Twitter: Go now & do!

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