Scleroderma: Part of The Adventure

Three children and a woman.

I recently announced my scleroderma may be in remission.  According to Merriam Webster,  remission (is)  a period of time during a serious illness when the patient’s health improves.

Remission was my word, not my doctor’s.  I have also heard from other patients who will not use remission as well.  The general consensus is, although the definition of remission does fit, and it doesn’t say permanent or temporary, remission is accepted as ceasing of the symptoms.  It fits when referring to cancer.  The cancer is somehow eradicated by treatment, and while in remission, patients do not experience symptoms of cancer.  The difference with scleroderma is, that scleroderma may run it’s course, or symptoms may be controlled by medication, but blood work, and symptoms show scleroderma is present.  The best term I have heard so far in reference to this is referred to as a “holding pattern” by patients and their doctors.

For me to say that I may be in remission is incorrect.  Symptoms will flare.  I will still have good and bad days.  When I spoke with my doctor I was elated that I may have lived long enough to be through the worst of scleroderma, I threw around the word remission, carelessly.  I apologize to you, who are kind enough to read my work regularly, and new patients looking for information.  I was talking about scleroderma incorrectly, and  I am s very sorry.  Of course, I still have sarcoidosis, but it’s symptoms are very mild for me.  I write more about scleroderma, because it’s just more aggressive in me than sarcoidosis.

I was very swept up in the possibility.  One of my best and worst coping mechanisms, is denial.  Like all patients with a chronic illness, I do not want to be sick, labeled as sick or live my life as if scleroderma defines me.  It works well for me, until I get swept up, as I did with the word, “remission”.

The last few weeks, I have been working through depression.  It is something that affects me more than scleroderma, in body and mind.  Scleroderma is a life-long commitment no one volunteers for, but we can choose how we cope with it.  A friend of mind gave me a name for my technique, he told me I am like Lt. Dan, from Forrest Gump.  I liked that comparison because it felt like it rang true.  Like Lt. Dan, I am angry about what life has handed me.  I never ever want to be referred to as handicapped or disabled, and don’t get me started with God.  I of course will not climb up on a shrimp boat mast and curse God during a hurricane, but I am certainly not going to worship God or pray.  (That’s a whole other post.)  For me, accepting scleroderma will always be a part of my life is a sore spot, but I do it.  That may be why I have a great deal of patience with everything else. Traffic or long lines seem like minor things, and a waste of time to get angry about, because eventually a long line will move.

Scleroderma has taught me to live in the now.  I am not in remission.  I may be in a holding pattern, but I will need infusions and medication for the rest of my life- and it will not be cut short.  That may seem unrealistic, but to me that is one thing that is not.  Scleroderma, childbirth and a severe head injury have thrown a lot at me these past 43 years.  I have a lot of life left, and there is treatment for my symptoms.  I will continue to work hard to stay healthy, which we all need to do, scleroderma or not.   I have not yet reached mid-life.  I have a ten year old son, and I plan to see him walk on Mars, and meet his children.  Life is full of obstacles. I choose to make obstacles, part of the adventure.

I Don’t Have Cancer, But A of The Side Effects of My Meds May Cause Cancer.

Last week, I met the  Chief of Rheumatology at Long Beach Veteran’s Hospital..  She seemed cool.  She had some great ideas.  One of them was changing my medication from Remicade to Humira.  That’s a great idea, however, not one I’m on board without some research.

 

Remicade has some nasty side effects; one of them is Lymphoma.  Humira has nasty side effects; one of them s rheumatoid arthritis.  If I take neither, scleroderma ad sarcoidosis will progress and eventually kill me.

 

Remicade appears to be working, so why change?  I received a phne call fom the Fellow who saw me in rheumatolgy and she was ready to replace my remicade with humira as soon as this week.  Well I’m not ready, and here’s why:

 

Like most autoimmune diseases, scleroderma is different for every patient.  I’ve been blogging since 2009 and I have yet to meet another patient with scleroderma and sarcoidosis.  When I started taking remicade in 2007,  I did it without hesitation because I was newly diagnosed, and any new treatment option was better than none.  After starting remicade  I noticed a great deal of improvement right away and since that time, have progressively gotten better… Or have they?

 

I could be a frog in the preverbal hot water and might be boiling to death as I write this.  What is a “frog” like me to do?  Research, ask questions and be patient.

 

 

I stated earlier that autoimmune diseases are different for anyone.  And I like my new doctors, but I am not ready to trust their recommendation without further research.  I have been seen at UCLA by the same doctor since 2005, who has been managing my treatment by the Veteran’s Healthcare System.  My new doctor had known me less than 20 minutes and recommended treatment change, which I would have welcomed if I had currently been receiving no treatment.   I need my medical team to get to know me more before making much a big change, not only because the new medication may fail and my symptoms come back quickly, or I have a reaction to the new medication.  Something that tipped me off to thinking I needed to wait was how the attending rheumatologist voiced concerns about my shaving.  Yes, shaving, like wit a razor, because I could cut myself while shaving.  (Yes, I’m laughing as I write this.)

 

If I was a doctor, and read that a patient I was seeing that day has had scleroderma and sarcoidosis for nearly 20 years, I’d assume they were frail and shaving might would dangerous for them.  I know that we all make assumptions based on our experience and doctors are no exception.

 

There are so many variables that can effect how a patient  will respond to treatment for anything.   Here are some of mine:

 

Maybe I had more MRSA infections in 2009, because of Remicade.  Or maybe it was a coincidence, because I was hospitalized in 2005 for two weeks because of MRSA infections, before I was even taking Remicade.

 

Maybe I will start doing even better because I live near the beach.  Environment plays a big role when it comes to my health.  Depression can cause my symptoms to get worse because I will crawl into bed and talk myself into staying, when I’m unhappy.  Muscles atrophy, lungs do not get worked and atrophy.  My health (and I know I’m not the only one) is more than my physical condition, my mind plays a big role in determining my overall health.  It;s not mind over matter, it;s working with what I;ve got.  Chris Dean f Life Your Way, explains this well in her post today about creativity.  We can take back what we’ve lost by adapting.

 

Look,  I know that someday, Remicade will stop working and my treatment will have to change, but I have no interest stopping Remicade if it’s working for me.  If I can find data that will show me that Humira is better, I’ll definitely agree to changing.   I know that I have used at least four of my nine lives.  The side effects for both medications are brutal.  Cancer sucks.  So does scleroderma.  I see statuses on Facebook sometimes that read that one disease might be easier to handle than another.  My position is, they all suck.  I would never take scleroderma over cancer, nor would I take cancer over scleroderma.   I would choose none of the above, but oh…. that’s right…  we don’t get to “choose”.   So, I’m having my Remicade infusion this Friday, but not before getting tests to see if the Remicade is working or not.  Then I will talk to my doctor at UCLA and discuss changing treatment options. If I was not working to be my own best advocate, I’d be worried I might cut myself shaving.

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.

 

What Would Jesus Really Do?

It’s that time of year when Christians reflect on the sacrifice Jesus made for us all.  Honestly, I think many people focus on the torture & death more than his great works.  Look at the symbol:  A emaciated body nailed to two pieces of wood.  That’s not what Jesus was about.  He was crucified.  It  happened to him.  He spoke out and made things happen.  There is a difference.

And Jesus said, “Screw the rapture. You all stay here and keep fighting over guns and eggs. I’m going to a pool party.”

Jesus was about love.  He was about teaching  that we are in this together and we need to be taking care of each other.  If Jesus came back today and saw everyone fighting over guns, while people died of treatable illnesses; no one would be raptured. Not even you, Kirk Cameron!  (By the way… That crush I had on you- totally over it!)

Every day I surf the internet.  Some days I get lucky in the sea of information and ride the wave of a patient’s successful lung transplant or remission, but usually I just drop in on a wave of obituaries, memorial web sites and fundraisers in someone’s memory.

I participated in a chat between Treatment Diaries and Michele Lonabaugh, of  52 Shades of Blue, and something a participant in the chat said, really hit home with me.

Andrew Lopez, RN said: “…most #oncology#cancer research, funding goes to primary cancers, not Mets.#treatdiarieschat

Which explained a truth to me that I have been pounding my head over for years: “The “meat” of research funding goes to the popular  diseases and the scraps go to the ones not so pretty.

You know what I can’t figure out?  That, with all the popularity of making it cool to use the term “boobies” to raise money, wear bracelets and shirts that say “save the Tatas” with all the cheep chachkie’s in landfills; I can’t figure out why people are still dying from tit cancer.

It’s all money.  There is research done that makes amazing breakthroughs.  I am so frustrated because I get all the Viagra and Remicade I need, while others wait for a pencil pusher from an insurance company to tell someone who could benefit from treatment ,that it’s not “in their formulary”.

And why?  Because we don’t want to be communists.  Because we are to stupid and to profit driven and have it ingrained into our psyche at birth, that socializing something  will lead to the end of capitalism.

I know what you’re thinking, “But Karen, we can’t socialize healthcare.  That would make us communists.”

Yes, the worst possible thing that could happen is we will become communists because we cured some people.  God forbid we take care of the sick.  Oh wait… Isn’t THAT what Jesus would do?

No.  Making medicine and care available to everyone who needs it would not make us communists.  Taking care of the sick would make us more Jesus-ey.

So while you are all hunting for Easter Eggs after church this  Sunday, or worrying about the “potential life” in a perfect stranger’s eggs,  I will be wondering if anyone will ever get Jesus’ message.  At least anyone who can make a difference.  Right now, I see a bunch of people fighting over money.  Not care, not health and certainly not behaving like  one who walks in Jesus’ footsteps.  Forget about the rapture.  We would’t deserve it anyway and  Jesus has better things to do, like go to a pool party.

I am so probably going to copyright hell for this. It’s from Funny or Die.

 

 

Let’s actually cure something.  Let’s have all the money go to research,  dispensing of drugs and treatment.  Ron Burgundy movies have, and will continue to provide us with an abundance  of quotes to put on t-shirts, with plenty to say about guns and boobies.

 

U Tube clip from The Guitar Guy

Things Jesus and friends said.

A Community Dances In The Rain To Fight Hodgkin’s Lymphoma

Joey and Oliver after latest round of chemo. He is due again October 23.

My sister Andrea is part Mary Poppins,  part MacGyver with Moves Like Jaggar.  She is organized, energized, a true Virgo and I am proud to call her my little sister.  I’m not featuring Team Joey in my first Fundraiser Spotlight because my sister Andrea has incriminating photos: I’m featuring Team Joey because my sister, Andrea Brookshore, is one of Joey’s Angels.

A Community Comes Together 
Joey’s Angels is the team behind the scenes, organizing the activities of Team Joey;   a small community in upstate New York, that has come together to raise funds and help eleven year-old Joey’s family pay for his life saving medication and expenses.   Joey’s Angels organize events, make phone calls, inventory donations and keep Team Joey running like a well oiled machine of love and support to Joey’s family.  Joey’s Angels know the well being of his family is just as important as his cancer treatment.

Falling Through the Cracks
In addition to Joey’s diagnosis, his parents  Holly and Ben, were devastated to learn their insurance only covers $5,000.00 of prescriptions each month.   Joey  is in stage 2A of Hodgkin’s Lymphoma.  That means Joey has “involvement of two or more lymph node regions.” (National Cancer Institute).   The urgency for treatment is obvious, but at $3,500.00 per dose, Joey’s chemo is the tip of the iceberg.   Joey’s family has to travel three hours one-way for treatment, while maintaining two incomes to put food on the table and keep their house and manage a “gift with purchase”: The overwhelming worry of loosing a child and brother to cancer.

Joey’s family is one of many who fall through the cracks.  They don’t qualify for Medicaid because their income is to high; and they certainly do not have the cash to cover the expense of paying for treatment up front.  That’s right; payment for treatment is required up front.  They don’t get billed for chemo shots and  Joey doesn’t receive his life saving treatment before payment is made in full.  Luckily, Joey and his family have a fleet of angels.

Joey’s Angels, have taken the Team Joey Facebook Community, from zero to 486 likes as of 10/18/2012 at 9:29pm- less than three weeks after launching.    But this Facebook page is about more than just getting “likes”.   This page is filled with the pictures and prayers of a small community working hard to lighten the load of one family.   There are pictures of  the  recent can drive, items for raffle and updates about Joey’s progress.

What strikes me most about this community is watching  human beings at their best during the worst of times.  There is nothing fun about watching a family cope with cancer, but I see a community  “Dancing in the rain.”  And this Saturday, dancing is exactly what will happen.

This Saturday, October 20, Team Joey is dancing in a Zumba Fundraiser  for Joey’s treatment and family’s expenses.   There is nothing more painful to a parent than the helplessness of watching your own child fight for his life.  But because Ben, Holly,  Hanna and Joey have the support of Team Joey, I have unyielding hope this family will prevail intact.  The load of things like expenses will be lightened by the help of their community, giving the family time to focus on each other, where their strength is needed most.

Holly, Joey’s mom, is a Zumba instructor and while she is at home with Joey and my nephew Oliver, her teaching partner, Dani will be leading over 300 people in a Zumba class with Holly’s husband Ben and their daughter Hannah.  In this way, the community  will be putting their minds and bodies in the game, if only for 90 minutes.  Nothing is more powerful than souls coming together in dance.  Humans have been doing it for millennia for a reason.  It’s not just 90 minutes of dancing; it’s 90 minutes of empowerment that will strengthen the bond of this community.   There will still be still more work to do when the music stops, but for 90 minutes, more than three hundred people at a school auditorium in Upstate New York, will cry out in one loud voice “No!” to the cancer in Joey’s body.    Dancing  in the rain of tears, prayers and love.

You and I may be reading about Team Joey  a few thousand miles  from the Zumba Fundraiser this Saturday, but we can help through the power of social networking.  Share this story.   If 500 people read this post and 100 of them can kick in $3.00 each, that’s $300.00.  Imagine what could happen if 500 people share Team Joey’s page.  There is no such thing as a small act of kindness.  Visit and “like” Team Joey’s FaceBook page and see how you can make a big difference with a small donation. If you live nearby, you can participate in the Zumba Fundraiser, upcoming spaghetti dinner, raffles and events in the works.  Joey’s fight has just begun.    Please join Team Joey and  make a difference.

About Hodgkin’s Lymphoma and the Possibilities of Successful Treatment
Hodgkin’s Lymphoma is one type of cancer with many stages and types.  It can occur in children and adults, which makes Hodgkin’s Lymphoma is an equal opportunity destroyer.  Follow the links to learn more.  Cancer research has created the possiblity for treatment of other diseases;  such as immunosuppresants for autoimmune diseases, better treatment of medication side effects and complications, patient care and caregiver education in not just cancer, but all illnesses.  Progress in cancer research helps all, and we are in this together.  Cancer gets a lot of publicity, but it ‘s not enough because people still die of cancer. Now that there is treatment to put cancer in remission,  large amounts of money to pay for life-saving treatment is now needed because patients like Joey, are  falling through the cracks.   Join us and support the fight for Joey’s life.  Thank you.
Links to Join Team Joey &  Learn More About Pediatric Hodgkin’s Lymphoma

About Childhood Hodgkin’s Lymphoma, treatment and prognosis: National Cancer Institute http://www.cancer.gov/cancertopics/pdq/treatment/childhodgkins/Patient/page1

Treatment for Hodgkin’s Lymphoma: Livestrong
http://www.livestrong.com/article/214333-what-are-the-treatments-for-hodgkins-lymphoma/?utm_source=popslideshow&utm_medium=a1 

When your child has cancer: The American Cancer Society
http://www.cancer.org/treatment/childrenandcancer/whenyourchildhascancer/index 

A unique resource for cancer: Cancer 101
http://www.cancer101.org 

Online Support Community, Inspire

Many people benefit from weekly support groups.  Many have to drive hours just to find one near them.  It’s hard to be a patient with one or more hard to pronounce, never been heard of diseases.  It’s very easy to feel isolated.

I’m not sure when I discovered Inspire.com but I am sure it is a place online where I feel so not so alone.  It helped me open up about my own experiences and help others when I could.  The site is well named, because it did and still does inspire me.

One of the many things I like about the site is you are able to vent to your fellow patients and not have it publicly shared without your permission.  It’s a community with some privacy.

Do you think you are the only one with your rare chronic or terminal illness?  Check out their search and find others.  You may be surprised.

This is who can benefit from reaching out at Inspire.com and can find a positive experience.

1. If you have a chronic  or terminal illness.

2.  Know someone with a chronic or terminal illness

3.  Are a caregiver of someone with a chronic illness.

But you will not know the benefits if you don’t  take the first step by reaching out.

I can go on about my experiences, but like any online group, I prefer to follow the rules and keep my interactions within the group.  This is a short post, but Inspire.com speaks for itself.  Please visit Inspire.com and see for yourself.  Take the first step and reach out.