Uncategorized Archive

When it comes to language, I am not a fan of banning anything.  Yet here I am at 3:30am, wide awake and writing about the #BanBossy campaign.

 

I don’t disagree that #BanBossy is part of a marketing campaign for the book Lean In, but as far as getting people to talk, it is proving to be effective.  Women are sharing their experiences and it’s more than just the word, “bossy”.

 

So, why I am up at 3:30 unable to sleep?  Because we don’t need a campaign to ban a word to know that women are not viewed as leaders by many.  But,  there is a conversation going on based on a word banning campaign.

 

I can give many examples of judgements and actions based on discrimination because of gender.  Bossy is one word and I have seen and heard the term “female” used as a negative too many times to count.    Words are just a tool, and like any tool  the outcome of the job is based on how a tool is used.  And like any tool, words will be replaced.  Maybe the actual ban of one word isn’t what this whole thing is about.

 

I was born in the 1970’s.  I was told I could not do do many things because I was a girl.  I don’t blame how successful I am or not, on being told that.  I’m stating a fact.   #BanBossy won’t solve the  the problem of gender discrimination, but it’s got people talking.  So yes, so far one word is making a difference.

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In August, I moved from Murrieta to Long Beach to be closer to a Veteran’s Hospital.  I was being seen at Loma Linda Veteran’s Hospital, in San Bernardino for over 10 years.  I moved to Long Beach because I prefer the beach to the mountains.

 

Yesterday, I had a follow up appointment with my rheumatologist in Long Beach.  We did not agree on  resuming treatment for scleroderma and sarcoidosis.  I could go on into details, but I won’t, because it will be only my version of what happened.  It will be riddled with my emotions and one-sided.   Because I was so one-sided about one topic- resuming my treatment, I forgot to mention other issues that needed to be addressed.  The rheumatologist will not see me for three more weeks.  When her office called today, I asked to see her next week because our appointment was unfinished.  He  made it clear I would not be seen for three weeks, but did say I could stop in next week and talk to one of the Fellows.  So, that was very reasonable.  None of my problems are life threatening and can definintly wait one more week.

 

Yesterday, I lost my cool.  I did not yell or cause a scene, I just could not focus based on this disagreement. My appointment ended before I could address all of the topics that needed to be addressed.  I did this in the 1990’s more than a few times and symptoms would get overlooked simply because I was too upset to stay focused.

 

My point?  

Being my own best advocate has helped me throughout the years, but because I am advocating for myself, when I get upset, I need to take my emotions, set them aside from whatever has made me upset, and move on to the next topic, otherwise it will get overlooked.

 

This is not the first time this happened, but it has not happened in about 9 years.  It’s growing pains into a new health care system.  This is a working environment.  Although my day to day business at the Veteran’s Hospital is for my personal well being, it is still a working environment.  Things will get personal, but I cannot take them personally, because it fogs up my view in the moment.  Taking care of our health is a full time job for everyone  For those with chronic illnesses, we live where we work.  We don’t go home at the end of the day, our job is 24/7.  When dealing with doctors or any health are setting, – for me, it helps when I think of providers as my peers on the same team.  Of course I do not have the same education and experience a doctor would have, but we work together on the same team. And my providers belong to countless teams lead by every patient or caregiver of a patient’s team.

 

We are all unique.  

Patients with all diseases are unique because every human being is unique.  How our disease affects us is unique.  And how we advocate for ourselves and cope with the treatment, or lack there of, is unique.  I cannot speak for anyone else, but me: a patient diagnosed with scleroderma 20 years ago and sarcoidosis 8 years ago.  I can say after all this time it can be very difficult not to show my feelings of Hulk Smash! going on inside, but  it has gotten easier not to.   Luckily with age and experience comes wisdom and patience.  The wisdom helps, still getting better with the patience and somedays, I have neither.  Yesterday, was difficult, but I see two more doctors today to help address some of the topics missed yesterday.

 

Every doctor is unique, especially when it comes to scleroderma. (Not just “Scleroderma” more like “Insert Disease here”.)  

The doctors I worked with in San Bernadino were very open to working with a doctor at another location because they referred me to that doctor.  Here, I came in and (I’m paraphrasing) told this rheumatologist my treatment is managed by another rheumatologist and I come to the VA because that is where my care is available at no cost to me.  Because of the treatment relationship with a doctor who has vast experience with scleroderma, I have been able to challenge formularies of the Loma Linda VA because the Rheumatologist there referred me to him.  This is different.  I am stepping into another rheumatologist’s “house”.  I’m asking this physician to just “do what the other doctor recommends”.

 

We had no prior relationship relationship other the me coming in, refusing her recommendations and continuing my treatment that she has to approve in order for them to go forward.  Doctors have feelings.  Should I care?  Yes, because in my mother’s generation, they took a doctor’s word as Gospel.  Some people still do.  I question everything.  Not out of disrespect, but because I want to know.  It’s not like a discussion in a college history class, I’m emotionally attached to the outcome.  At times, emotions get in the way.

 

Yesterday, I was reminded that I may know a thing to two, but I don’t know it all.  I’m not saying the doctor I saw yesterday is right and  I take comfort she is not my only option.   Self advocacy is all about finding options.  If I continue to hit roadblocks, instead of becoming upset, I can look at my options and work to be seen elsewhere.  I can move forward, be patient and work in my own best interest.  The hard part is when I feel all “Hulk Smash!” inside, no matter how much experience I have, there will be some times I have trouble not acting as such.

Update, 5/13/2014.

The chief of rheumatology at the Long Beach VA, has turned to be an unfavorable match for me.  So I am moving my care to the West LA Veteran’s hospital, where the chief of rheumatology is willing to work with my doctor at UCLA.  The Rheumatology Chief tried to give me incorrect information about effective medications for my condition.  She actually recommended something that has been shown to be less effective than my medication that I had been taking for nearly 7 years, for reasons I cannot even imagine.  The bottom line is, if I cannot trust my doctor to give me correct information based on what works, instead of a formulary when non-critical, I cannot trust her during a critical event.  So, I’m taking my “ball” and going to “play” somewhere else.

 

 

 

Message Recived

By Karen | Filed in Uncategorized

One thing I know for sure is that I have a lot to learn.  Here I am just buzzing along then, I end up in the hospital for 45 days.  You’d think after all this time I would have known to ask for an MRI of my foot both times I had been hospitalized for infections in my foot before this happened.  Hindsight- why can’t hindsight just happen first?

Update June 22, 2014
It was not that I needed an MRI, in fact it was quite the contrary.  It turns out  the doctor who diagnosed me in the hospital, specialized in orthopedics, not rheumatology.   What the doctor thought was an infection, may have been inflammation, which the rheumatologist who confirmed her diagnosis should have caught, but did not.  The only way to know for sure that what the doctors thought was an infection, would have been to take me off antibiotics to see if the infection returned.  The infection has not returned.  There is more I need to research over this, but I wanted to mention this here because I was wrong about having an MRI for infections in the past, and that needed to be corrected.  

 

The good news is, I still have 10 fingers and 10 toes.  I have some magazines with pictures of pedicures and I think I will cut them out and hang them in key places so when I open the fridge, I’ll be reminded to eat for my health.

 

Starting Monday, I will start doing yoga every day.  I did it once every day for an extended period and had great luck with it.  I say Monday, because tomorrow is always tomorrow.  I’m just going to keep plugging away by exercising and doing all I can to get back to health again.

 

I keep trying to pinpoint how I got this infection.  I wonder, has it always been osteomyelitis? I need to stop wondering, keep working and just live in the moment and plan for my future.

Update, June 22, 2014.  It was not osteomyelitis.  

 

Monday is a brand new day.  I have better shoes and the infection appears to have run it’s course.   My body has a mind of it’s own and it decided to knock me on my ass to take me down a few pegs.  Message received.

Part 2.  I have recently been released from the hospital.  When I got out, I saw elected officials suggest we defund ACA to fund food programs for the poor.  The ACA is law.  It’s not perfect, but neither has anything else been perfect, at any time in history.  Yes, I am a disabled veteran, and with that comes privilege to free healthcare.    I am infuriated by the hardships  I  see friends and family members  go through to get life improving, even lifesaving care.    I am lucky to be a disabled veteran, because I would be dead without the great, sometimes imperfect, care.  Medicine is a practice, especially in my case, but not just in my case.  I just have been lucky enough to have the resources to fight. 

 

I have  never met the guy, but I’m pretty sure Jesus would not ask the poor to trade food for their medical care.

Our country is changing.  As we become more accepting, we are dragged back a few steps by people who do not want change.  Maybe it’s because they are afraid of change, or they enjoy salaries paid for by special interest groups who are doing all they can to avoid paying taxes.   We are spoon fed cherry picked and inaccurate information.  I propose we own what they call those who are trying to make their lives better by working are, but getting paid unfairly; or those who want to work but cannot find a job; or those who want to work but are to sick to do so; or those who quit to take care of sick family members who need around the clock care or may be dying.  Those who proclaim this as a “Christian” nation missed a memo or have wrongly named themselves- unless the definition is not longer one  following the teachings of Jesus.

 

Smoke and Mirrors

Our culture is brainwashed to think of the poor and sick as villains.  That we are faking illness or being lazy.  That our goal is to lay on the couch and do nothing because we don’t want to work.  There is no system in all of existence that could never be gamed.  The whole system and anyone who uses it,  is talked about as if the majority of those receiving benefits are just lazy.  Here is something I want to ask: Could it be that many are poor,  because they are sick?

 

The VA is not socialized health care.    

Well, for 100% service connected veterans like me, it is.  Everything is free.  I pay no copay, nada, zip zilch.  And, if I am not satisfied with my care, I can change providers.  People who work in the Veteran’s Hospitals help veterans get the best possible care.  They are good, well meaning people who even tell veterans to their face that they are there to serve them.

 

My healthcare is great, but in other matters, that’s another story.

While I was in the hospital for 45 days receiving that delicious socialist healthcare by an amazing group of doctors, nurses, caregivers and a nurse practitioner who could not be stopped, my car was ticketed, impounded then repossessed by my car’s finance company, because I was unable to get it out of impound and impound fees would eventually be as high as the current value of my car.  Not because I couldn’t afford the payment, but because I couldn’t afford the impound fees.  It was an unfortunate outcome, but I calmed down once I remembered I could always get another car, but I will never get another foot. As with many fighting health battles, a small slip up like forgetting to move one’s car can be devastating, but the priority of health must come first.  I’m lucky because I just lost my car.  I don’t have any hospital bills or copays.  I am very lucky.  Getting healthcare should not be given to only  those who can only afford it or have Veteran’s Benefits.

 

I am Entitlement Nation

I collect Social Security in addition to my Veteran’s Benefits.  I am part of what Fox news calls, The Entitlement Nation.  You don’t even need to hear the sound to know what this graphic means:

 

 

See that outstretched hand ripping through the heart of the United States of America?  That is how Fox News depicts me, an American Veteran, who in addition to her veteran’s benefits collects Social Security, and those who share my same health conditions who are not veterans.  Look very closely into the pixels of that hand.  There I am right next to someone you have never met who doesn’t have Veteran’s Benefits, lives on entitlement programs and is very, very sick.  Of course they did not pay in blood sweet and tears, as veterans and their families do.  I am in no way saying that Veteran’s do not deserve the best health and assistance.  I am saying that those they come home to need help,  are being vilified and I find that sickening.

 

One, two, three, what are we fighting for?

I joined the Navy in 1990 because I was a 19 year old manicurist who wanted travel while saving up for college.  I served during a combat era and saw no combat.  In 1994, I was introduced to the real cost of war because I saw and met many vets who did see and do horrible things just to get home alive.  So yes,  I am speaking about majority of people who are poor and sick and cannot or could not get healthcare throughout the past 20 years I have seen, who did not serve in the military.  Civilians.  But aren’t they who the military serves?  There is not one service member who does not know of someone who has died prematurely of cancer, or some disease.  Don’t those who stay home deserve care not just because of their vocation, but because they are fellow human beings?  What freedoms are we sending our service members abroad to fight for, if not to protect those they love at home?

 

He who has the gold, gets the care.

The ACA is a start.  Medication is still outrageously expensive in some cases.  Access to preventive care and treatment for acute diseases should not be denied on the basis of payment.  I feel like the more elected officials try to change this, the more vilified the poor gets.  We blame the takers.  Takers like me.   Yep, I make a lot of money off the government teet.  I would like to thank all taxpayers for allowing me to have the ability to get the care and medication I need to be alive. I am represented by that outstretched hand.  Me and millions of others who receive Social Security at a young age, food assistance welfare and unemployment benefits.  Did you know that all service members are allowed to collect unemployment benefits from their home state?  I did when I got out.  And so did every other person I know when they got out.  But that was a long time ago…

 

Fox News is very popular at the VA Hospital, and not for visiting veterans.

Over the years I have sat in VA Hospital waiting rooms where Fox News was on TV.  I have watched Fox News devolve into a delivery service of lies and misleading statements that would make a public outhouse at the end of a county fair look attractive.   That outstretched hand may not represent those Veterans watching, or maybe some of this veterans watching are on welfare and SNAP while waiting for their benefits to be processed.  Yes, there are veterans out there collecting welfare and SNAP benefits to feed their families while they deal with going through the VA system for mental health treatment or maybe care for a missing limb.  That graphic may represent those they come home to, or those who care for them.  Our ability to have empathy for our fellow humans is being smothered.

 

Caregivers must eat too.  

Let’s talk about caregivers.  I know someone who lost her job and took on the duties of caring for her father, a veteran,  in his final years with late stage dementia.  After he passed, she continues to care for her mother full time.  She collects no wages.  Every day, she and her immediate family manage the daily care for the 85 year old widow of a veteran.  Her mother needs care 24/7.  If my friend has time to sit down and eat bon-bons and  watch a little TV, I’m thankful she enjoys a break.  In addition to her family, and three more like them I can think up off the top of my head, there are families all over the United States in that similar situation.  People who had to quit their jobs to take care of a sick parent, child, brother or sister, and may not even qualify for benefits and even fight for benefits after their loved one has died.  They fight on behalf of the sick family member for benefits that are barely above poverty level, and mediocre medical care,  in addition to taking care of the family member while collecting no wages.  They may eventually need to use assistance for food and shelter.  There is no shortage of unique situations that have one thing in common:  They result in poverty of the sick individual and caregiver, resulting in a life of hardship in addition to the ever-present cloud of death that hangs in the air over the home of every chronically ill person.    I actually watched a man with a british accent on one channel talk about how someone without a high school diploma, does not deserve higher wages for their hard work.  Who is that blowhole?  And what gives him the right to determine what wages someone should make based on their education?  You can have a Phd and still be horrible at your job.

 

Why do I write about this?

As a country, we can do better.  I’m tired of reading statuses of benefits being denied to very sick people, people in need.  People who could benefit greatly from medication now, and not when some paper pusher gets around to making it possible.  I collect social security in addition to my benefits, which is what many elderly veterans do, and I am no where near elderly. I paid into it as long as I could.  I want to work, but with my health, it is not an option for the full time job I need to be able to provide for me and my son.  I used to feel guilty about receiving Social Security benefits.  Seeing this graphic below doesn’t make me feel bad about “motor boating” the governments ample breasts, as Jon Stuart so eloquently stated.  I am empowered by it to tell you what I have, and make an argument for better care of the sick and poor in the United States.

 

With all of this vilification of the poor, when will they propose we just leave them to die.  

Do you want to live in a country that vilifies it’s sick and poor?  I don’t, but guess what? We do.  That graphic describes me because I am a taker.  I create no jobs.  I collect social security.  Yes, I am a veteran, but I am not going to pass up on benefits that will make my life less about my illness, not this  mom.  Do I not deserve to give my son the best possible life,  or should I not, because I am sick and I need to stay home and wait to die?  That is how I feel when I see graphics and ideas supporting vilifying the poor.   Should my almost 10 year old son be forced to take care of me when he comes home from school every day?  Or should he instead enjoy learning leadership skills and physical exercise at marital arts class that my income allows me to provide?  If I did not have my veteran’s benefits, he and I both would have died in child birth because there would have been no magic letter.   When I was able to work, I had benefits and assistance to take over my family’s small business because of my disabled veteran status.  No.  Had I not joined the Navy, I would have had to quit my job as a manicurist and live on social security and live with a family member.  Had I not joined the Navy, I may not have scleroderma or sarcoidosis- but that’s also a another post.  Those possibilities are not my realm and I am fortunate.

 

I am not sitting on my ass all day eating bon-bons.  I am healing or working to stay healthy so that when I see my son, I am 110% present. Like all children, he deserves that.  I read about single parents scraping by, sick as hell taking care of their kids with Social Security as their only source of income.  After medication copays and doctor’s visits, they can afford processed food, because it’s cheaper, but causes more complications to their illness.  If you think that eating macaroni and cheese, or an easy drive through meal  instead of a meal with a form of protein and fresh vegetables doesn’t make a difference in health, then you are living in the 1970’s era of meat and potatoes, cigarettes and disco.

 

Turn off the TV and see what happens.  

We take a lot for granted in this fast food culture.  Simple things like how non- processed meals can make the difference in a person’s ability to function.  Worn out shoes cause a blister than can send a person into the hospital for months.  It comes down to the basics. Talking heads and even elected officials go on and on about our country’s lack of family values and build a crisis based on who should marry whom.  Buzz words are tossed about to scare the ignorant, distracting this country from doing what it needs to do for it’s citizens.  They are convincing people to vote against their own interests.  If we don’t stop this madness and start taking care of our sick, we are in no way worthy to ask for the blood, sweat and tears so many in our past and present military have, and continue to shed for this country.  Change the channel.  Turn off the TV and go outside.  That is real.  Fox News is not.

 

Who am I?

I’m just a patient with a blog.  I write to share my experiences. I do want to make the world a better place. My life is no way perfect, but I get a lot of help because I am a veteran.  That’s awesome.  No, how about we take care of those people veterans know and love.  Yes, being a veteran is special.  But watching others with the similar illnesses and situations choose between food or medicine is wrong.  Oh, and don’t get me started on mental health care.

 

I don’t know where to even begin to address this issue so I’m going to just say this:  I am disabled and I collect Social Security and do not work.  So, according to Fox New, that makes me a taker.  #IamEntitlementNation  How about you?  Do you feel shame when someone asks you what you do?  Or do you wish you were able to finally get that teaching job back you were laid off from?  There are many unique situations, but must people be shamed because they are in need?  No.  I receive money every month because I’m a disabled veteran, in addition to my Social Security Benefits.  My quality of life is very good, my access to medicine is total.  I have survived 20 years and counting since my initial diagnosis.  My son will have his mom much longer, because I know I am taken care of and he will grow up not remembering watching his mom die a horrible slow torturous of scleroderma.  He will remember how full of life I was, and how every day was an adventure and he will have a solid foundation of love to look back upon.  So hey, why not make up a silly hashtag in response to that silly graphic, and see what happens?  Tweet, Instagram, or Facebook a short sentence with #IamEntitlementNation   Don’t do it because I suggest it.  Do it if you ware tired of seeing the poor and sick vilified, denied medical care and needing get the basics in life.    It will give us all something to do while we wait in the doctor’s office, or taking a break from sending out resumes.   It’s just a suggestion.  I’m recouping from nearly loosing my foot.  I’ve got nothing but time.  Except Thursday.

 

Update, June 22, 2014
Since writing this, it was revealed that veterans waiting for their appointments, have died while waiting for care.   My story, is one of a veteran who has had access to veteran’s care and private insurance for nearly 20 years.  When service members started returning from Afghanistan and Iraq, The VA Hospital I went for my appoitments in Loma Linda, became increasingly overcrowded.  It is sad that people had to die before the American public, and journalists decided to pay attention.  

I have expressed my frustration with health care not available to many Americans who are dying because of it.  It is my opinion, and strong feeling that the Veteran’s Healthcare system is one example of delivering care to those who need medical care.  It is not a perfect system, but it does work.  In order for it to work,  patients must learn to advocate for themselves.  But this is not just about Veteran’s Healthcare, this is about healthcare for all.  And now, please read about my journey, and how I developed this opinion.

 

My experience has shown me that patients can motivate the doctors and nurse practitioners to challenge an off -formulary treatment with reason and facts.   I have received these therapies with success, but not without a fight; veteran or civilian.

 

I have scleroderma and sarcoidosis.  Doctors have initially  not known what to do with me since 1994. Over the years, my ongoing treatment has evolved into treatment and intervention  based on case studies, and advances in research, without giving up until an answer is found.    Not every doctor runs into my diagnoses, and active attitude, so they are forced to work with me to find the best answer.  I joke about my adventures and mistakes.  I share them because I want to share how I have made a difference in my own care  by being an active, educated voice in my treatment.

 

There is a way to push through closed doors, but you can’t show up empty handed.

I was diagnosed with scleroderma in 1994.  Shortness of breath was becoming progressively worse.  Frequent visits to the ER with shortness of breath, was just considered part of the disease process of scleroderma.  Local doctors and the doctors at the VA were of the opinion, there was nothing more to be done.

 

I had the Resources.

In 2007, my family had what was referred to as, “Golden Insurance”.  My ex-husband and I owned our own business and I was in charge of the health insurance plan.  At that time, golden insurance opened doors – even to the way some drugs are administered.  I’m going back to 2004 to give an example.

 

When I was in the hospital, pregnant and awaiting  for the anticipated premature birth of my son, my body’s organs were failing.  I shared a room with a woman who had the same exact condition.  Throughout our day, we were given painful steroid shots to help boost the lung development in our babies, who were about to be born 8 weeks premature.  We were both connected to IV’s.  I asked my nurse to please put the shot in my IV, she complied.  When my roommate asked the same, the nurse was unable to do so.  Why?  Because her insurance only covered steroid medication to be delivered by shot.  Yes, you read that correctly.  My roommate was in serious pain over these shots, which created more stress to her body and  her baby.  The nurse could not relieve unnecessary pain with a simple shot given in her IV.  Why was I spared?  I did not have golden insurance at the time, I had a Magic Letter.  This letter was issued by the Veteran’s Administration.  Because the VA hospitals do not do pregnancy and pre-natal care, 100% service connected female veterans are issued a letter that basically states- and I’m paraphrasing:  Pay for everything this veteran asks for, regarding the care of her pregnant body.

 

My motivation for sharing my experiences is that  I have found that outstanding health and preventive care is possible.  There are easier and less painful ways to do thing,s and it should not only be available to those with gold or magic letters.

 

Back to 2007

In 2005, I became a patient of Dr. Furst at UCLA, recommended to me by the chief of rheumatolgy, at my local VA.  Dr. Furst got me to start seeing a pulmonologist at UCLA, Dr. Ross.   By 2007, I had developed a healthy patient relationship with them.  They did not rush to put me on the standard treatments for scleroderma because I did not quite fit the mold.  They did a lot of “wait and see”.  I was active with some work, like diet exercise and rest, but I was not critical.  No prednisone, nothing but methotrexate.

 

I had been instructed by doctors thought the years that if I were at anytime short of breath, and it did not resolve with rest, I was to go straight to the ER.  After many x-rays and CT scans of my lungs resulting with no answers, I collected my local doctor’s notes, films and drove 120 miles to see my rheumatologist of nearly 2 years at the time, at UCLA.  It was a clinic day.  I called ahead and could not get an appointment.  So, I just showed up to the Pulmonology Clinic as one would crash a class.  While I was waiting.  I combed through my stack of radiology reports.   I found in more than one radiology report this word: Lymphoma.  I didn’t know much about lymphoma.  I just knew it was cancer and it killed people.

 

I waited out the clinic hoping to be seen at the end, but my doctor did not have time to see me.  I told the nurse about the mention of lymphoma in my CT scans.  She shared it with Dr. Ross and he instructed me to go the emergency room, so away I went.

 

The UCLA ER is a very busy place.  When waiting to see my doctor, I was in a room full of other beds separated by curtains.  The room had a “parking lot” feel to it.  There is very little wait time in the ER for a patient that complains reports the symptoms of shortness of breath.  I was rushed right away for a CT scan.  The findings came back the same, only this time my doctors did not assume this was scleroderma.  Often, people assume that whatever is happening, is a result of a chronic illness they were diagnosed.  I make this assumption often- it’s something I do need to keep in check, but that’s a whole other post.  Dr. Ross and Dr. Furst were in agreement that a biopsy must be done immediately to rule out lymphoma.  Just because I have scleroderma, it didn’t mean I couldn’t get cancer.

 

I was sent home from the ER to follow up with Dr. Ross.  A PET scan was ordered, done, and my lymph nodes lit up like a christmas tree.  The next day, I was contacted by my pulmonologist’s  office with a referral to a thoracic surgeon.  My ex-husband and I met with him the same week and surgery followed less than a week from my appointment with him.  Golden insurance opened the door to get me into the ER and give the doctors the ability to run the tests needed.  Getting there to get that alternative opinion, was my doing with the help of my mom and ex-husband.  My son was taken care of and my ex-husband was very supportive, and all of us were very frightened.

 

The results.  

After the biopsy, I woke up in the recovery room.  I think my aunt watched my son the day of the surgery, so that my mom could be there too.  I don’t remember a lot of that day.  It was an outpatient procedure called a medial stenoscopy.  They biopsied samples of my lymph nodes and lungs.

 

When I was more alert, my pulmonolgist,  Dr. Ross and the thoracic surgeon whose name I wish I could remember, came to my bedside to tell me the result of the biopsy.  My relationship with doctors is one that has the ability to speak candidly.  If a doctor does not show any emotion or engage in productive conversation with me and barks orders at me -unless I need it- I find another doctor.  Ruling out lymphoma is a very scary endeavor.  To relive my fear, I take on these “fact finding missions” like a science project.  I am amazed how the human body and how it works together to result in a sentient being and I feel like my doctors recognize my curiosity and humor I like to add to keep everyone- okay, mostly me,  calm.    My humor keeps me calm and then radiates to those who share my space, then I am energized by their calmness.  It’s a two-way street- again, whole other post.

 

Back to the results.  

Both doctors were at my bedside, along with my ex-husband.  As I said, I don’t remember much, but I do remember a sense of giddiness around me.  Good news was coming- sort of.  The good news was, I did not have lymphoma.  It wasn’t cancer.  What they did find, were granulomas.  They explained, the granulomas were what was causing my shortness of breath.  The granulomas would enlarge due to a flare up of the condition or stress.  They explained and I can’t quote verbatim, but here is what I understood.  There is very little known about these granulomas.  People live their whole lives with the presence of granulomas with minimal symptoms, live a long healthy life, and the granulomas are usually found after death.  But there are many cases where these granulomas effect the patient relative to where these granulomas are.  They can be in the lungs, lymph nodes, brain and other places.  This condition is known as a disease called sarcoidosis.  The two doctors told me they were stunned because they know of no case of scleroderma AND sarcoidosis being present in the same patient.

 

The follow up and treatment was to be determined by the team, and I was to follow up with Dr. Furst in rheumatology to determine the course of treatment.

 

Dr. Furst prescribed Remicade infusions.  At the time, veteran’s health care was available to me but I had golden insurance.  Because of formulary, I knew the fight would be easier by using my insurance at my nearest infusion clinic in Murrieta.  Dr. Furst did the order, and treatment followed shortly after.

 

My symptoms of shortness of breath did stop after treatment began.  It even appeared to help my scleroderma symptoms, and my condition remains stable, 7 years later and counting.

 

I was followed by the Veteran’s Hospital, but notes and treatment decisions are determined by UCLA.  Dr. Furst makes the recommendations, and the chief of rheumatology at the VA, made it so.

 

During a routine check up my rheumatologist at the VA told me I was smart to use my nearest public hospital and golden insurance. It allowed me the ability to receive the right drug the first time.  He explained to me (at the time) two other drugs would have had to fail before being given Remicade.  Two other drugs failing would mean side effects and complications- entirely unnecessary, for the sake of saving money.

 

Like all healthcare systems, VA hospitals have formularies and they are different for every VA hospital.   (again, a whole other post)

 

Because I asked for my records, jumped through hoops, signed releases, and limbo-ed my way to a hospital 120 miles away where the chief of research for the Southern California Scleroderma Foundation, Dr. Furst, I got my foot in the door.   That lead me to treatment that has extended my life.  Honestly,  I suspect the only reason there are no other patients with scleroderma and sarcoidosis at the same time, is because patients didn’t live long enough to get an additional diagnosis. Now, we are living longer.  Of course we need a cure, but as a patient I work with what I have.  The most important traits I have are determination, patience (that totally came with practice), and the ability to find a way to get to yes.  By yes I mean, identifying the problem and coming up with a way to keep it under control with treatment.

 

Being proactive requires work offline.

Look, I know a lot of patients go online to communities.  That is great.  Just don’t waste your time commiserating online when you can do something in your realm.  I spent time in online communities.  There are some I support and some I don’t.  It does;t matter the reasons.  I mention this because last week, I shared something I thought was funny about waiting for contrast to work during an MRI.  In the comments, someone replied, “I can commiserate with you.”  She later explain, she was just trying to say she understood.  Which was well intended and thoughtful, but it did get me thinking.  I write this blog not to complain or share misery and belong to a cohesive grip of victims I’ve never met in person.  I want to share what works for me.  The stops on my journey are filled with obstacles, but I try not to share without a solution or treatment path.  The reason:  I don’t want sympathy, prayers, followers  or to lead anyone.  I just want to see others get the same live-saving treatment I have found.  I open closed doors, and even sometimes kick them down and I share that with readers here for two reasons: Because I want to help others and I believe no one should be made uncomfortable or be in unnecessary pain because they have no gold or magic.  Demand better care.  If you are getting care you do not think is effective, fight for it.

 

Breast Cancer Awareness

By Karen | Filed in Uncategorized

Life Your Way shared this a few days ago on Facebook  and I hesitated to share because the writer’s opinions are similar to my feelings about teal, purple and “awareness” in general.

 

Read this article by metastatic breast cancer survivor, Leisha Davison-Yasol 

Please Put That Pink Can of Soup Down and Put Your Bra Back On

Did you click on the link to read the article above?  Please do, because if you read only one of these posts today, read hers.  Because this post that follows is about how I feel.  

 

 

I do not have breast cancer.  I have scleroderma and sarcoidosis.  I do have similar feelings about chachkies being sold to raise money.  Some have a good product cost to cause ration.  Others, do not.

 

I have two sides to share about my opinion, so please read the whole thing.   I might make you mad, and if I do, please use that energy to donate to research for a cure of something.

 

I can’t be the only one who noticed the legs first.  

Merchandising 

The author talked openly and honestly about her opinions of pink-washing.  She shows pictures that are relevant, not for shock value, sympathy and include a plea to “God”,  like I see for scleroderma.  There is so much public passion for breast cancer because it hits so many, but there is another side, that all diseases have:  Merchandising.  If we took the money and just sent it to research, wouldn’t  that  be more effective than receiving a chachkie to show friends?   There are survivors of breast cancer, but when I see the ads it’s all about pink and fun, no mention of metastatic breast cancer, which kills or leaves it’s victims nothing less than mutilated.

 

When I see this picture, I see victory.  

Power

But then, there is another side:  I usually want to smack the young men I see running around with bracelets that read “Boobs”, but I don’t know if he lost someone to breast cancer.  What if that bracelet helps him laugh through the pain he feels throughout his day.  There are not enough months, or colors in the rainbow to bring back those lost and mutilated by cancer, or any other illness.

 

Patients with cancer, scleroderma, lupus, sarcoidosis, MS, and so on, have one thing in common:  We all hate these diseases.  So if seeing a pink soup can pisses you off, use that energy for something good, like the author of this post suggests.  Or, rejoice in the feeling of power loved ones and survivors have over cancer, if only a moment as they cross the finish line in a Race to the Cure.

 

We don’t to choose from a menu the shit sandwich life can serve us, but we can choose how to deal with it, once it’s on our plate.

 

This part’s a little gross.  If you’re eating, you may want to skip to the next section…

Over the weekend, I had a sore on my foot.  It turned out to be a blister.  My original fear was it was one of those lovely calcinosis sores and luckily, it wasn’t.  It did become infected, but it was an external infection, so  I was able to soak the infection puss out.  Then I removed the dead tissue with sterile small scissors found in suture removal kits, called debreeding. Debreeding must only be done by a trained healthcare professional.  (Remember, I am a Wound Care Jedi.  I was shown how to do this in 1996 and I  have nearly 20 years of experience. DO NOT TRY THIS AT HOME)  If you visit your doctor, you can ask for a referral to a wound care clinic (or something like it).

 

Beneath the floppy dead tissue of the blister, was beautiful  healthy skin, instead of empty space and more fluid I have found  in hundreds of sores on my hands.  This tells me my feet are getting the nutrition they need from blood.  Now that a hospital stay is not in my future, I can focus on preventing further infections.  It started as just a blister, but it became infected because I have been wearing flip flops around the house and outside.  The bacteria that infected my blister may have come from needing new flip flops, or dirt and crud on city streets.  (ewww)  Most peoaple can wear flip flops, but I am on immunosuppresant drugs and sometimes washing my feet is not enough.

 

Time to Heal 

It would be ideal if I could sit here with my feet up and not move, but that is unrealistic.  Not only because I have responsibilities, but getting up and moving around helps my attitude, even when painful.  My experience has been that healing is more painful that the infection, but if I let pain keep me down all the time, I wouldn’t have moved for the last twenty years.

 

When something is painful, I classify pain as a type, and base my execution of activity on precautions and adaptation needed.    I don’t have a set classification scale, because it has changed over the years because every now and then I get a type of pain I have never experienced that requires my getting use to it before classifying it, but here’s an exapmle of the types of pain classification I use:

 

1.  None.  Haven’t experienced this one more than a minute or two at a time.  I equate “none” to unstable synthetic elements that have half lives that range from a few milliseconds up to a year.  Short lived, but does exists.

 

2.  Background Pain.  Present, but hums in the background with little interference in daily activities that are not limited to occasional a three second “pain face”.  Yes, it hurts but I can tune it out.

 

3.  Manageable.  Pain that requires pain medication to function.  Funtion-ability returns once the meds kick in and returns pain to status of background pain.  Rarely does pain at this level return to “None”, because the medication is strong enough to take the edge off, not dope me up.

 

4.  Ouch.  Needs pain medication and rest.  Pain medication levels required to knock the pain down to none and rest is required until activity can resume at a back ground pain level.  This usually takes a day and a half.

 

4.5  Holy Ouch.  Infection or injury needs to be checked by a doctor and treated with antibiotics.  Possible request for stronger pain meds.  I made it half a point higher because there is a fine line between ouch and Holy Ouch.

 

5. Level 5.

 

Pain is so high at this level, it requires a name in bold font, a picture and no less than a morphine drip.  Whatever is going on requires a trip the the doctor or  emergency room, that usually results in hospitalization.  With a Level 5, I would be in less pain had I run naked into a cactus.

 

Level 5 has become rare for me because of my ability to prevent injury, or early detection of infection.

 

 

Current Condition: Ouch.

The degree of this pain is mostly tolerable, but because of the location, I must rest more than I normally would.  It’s much easier to guard a hand than the bottom of my foot.  So today, I will spend it resting with my foot elevated.  This means when I do walk today,  I will walk a little slow.  Every now and then I will make a face, but other than my foot, I feel great, so it makes this workable.  And since resting all morning, I feel better.  I know that more rest today will result in faster healing because the skin the bottom of my foot will not be disturbed that much.

 

Tomorrow, I have a doctor’s appointment with the rheumatologist who was concerned about my ability to be able to shave.  Her mind is in the right place.  Had I read my chart from a doctor’s perspective and never met me,  I would not have expected someone so active to bounce into my exam room.

 

Helpful Healing Practices. 

Times like these when just one variable can turn tip a situation into a full blown hospital stay, I pay attention to things I can change, like diet.  I stay away from junk food.  My diet will consist of healing foods high in protein.  I will stay away from processed foods and drink lots of water.  I know what foods increase my chance of swelling and slow healing through experience.  Everyone’s body is different.

 

There is no secret to managing a chronic illness and living longer with one.   I am not a doctor, and I can only share with you what has worked for me.  Being a vegetarian is not one of them.  Without animal protein, my skin breaks down.  Soy protein in things like tofu or shakes increases my inflammation.  Sometimes it’s luck.   Most of it is as healthy a diet as possible, exercise and outstanding access to the healthcare I need with no financial barriers provided by The Veteran’s Administration.  I have to fight for things at times and even kick down a few doors, but because the VA system is a socialized one, it is not limited when I advocate for myself.

 

Pep Talk.

To fellow patients: don’t give up.  We have to fight for treatment.  Yes, it sucks but complaining will not solve this.  We need to get the information to the person who is blocking us from getting the treatment they need.  It’s hard not to make it personal.  I have a lot of practice loosing my cool.  It took me years to work from a position of, “This person does not have the information he/she needs.  It’s up to me to get it to them.  And I have to be patient and persistent.”  I spare no use of foul language at times talking to myself about this, and yes I consider that a coping mechanism.

 

 

Chronic illnesses are not always the cause of death.  Sometimes it’s financial resources.  

One reason I shout about healthcare reform and politics, is because I know that I would be dead had I not had the access to healthcare I do.  I know that many other patients with scleroderma have died because their insurance would not approve the best possible treatment, only the least expensive.  And it’s not just scleroderma patients.  I’ve read about Lupus, sarcoidosis, MCTD and too many diseases to name here who have died because of financial barriers.

 

So, if anyone needs me today, I’m relaxing and watching some TV with my feet up.  Have a great day!

 

Want more?  Find me on Facebook

 

1995 called.  They want their government shutdown back.  

 

I wasn’t planning on staying up until midnight.  I had Hulu Plus on while getting my list of bills ready to make payments.  I was very excited because I have started working again.  Commission is starting to trickle in, and I could see my goal of finally getting off of social security benefits.  My work was beginning to show results.

 

Lately, I have been refraining from watching live coverage of what I perceived as another attempt by certain elected officials as something to angry up the blood of their base, and keep them happy.  A so called filibuster of a law that passed three years ago seemed like a dog and pony show.  Boy, was I wrong.

 

My organization in front of the TV took me past the midnight hour.   I was excited to get my bills paid, so I logged onto my bank account to get the ball rolling.  I found it at a negative balance.  Then, I checked the news.  I spouted  obscenities on Facebook and Twitter and had a glass of wine (actually, half- but don’t tell my docs).

 

Luckily, my sedatives have begun to kick in and I can finally stop spouting expletives.  Not because the sedatives are working, but because I am tired and I am going to see my son tomorrow.  Luckily, I have a full tank of gas, food in my pantry and a roof over my head.  But there are disabled veterans and senior citizens who don’t have it as good as I do.

 

My point is, I hear people thank me for my service frequently.  Every time I do, I feel it is an empty wish.  I did nothing heroic.  I got two autoimmune diseases from doing body work on boats without proper safety equipment because there was not equipment small enough for me back in the day.  (Everything was made for men, even in the 90’s)  Luckily, the Veteran’s Administration took responsibility by providing life saving healthcare to me and my son.  I was given monthly veterans financial benefits because I have two debilitating diseases.  I feel so happy that I am returning to work.  My Veterans benefits allow me to work at a pace that can allow few hours because my health does make it difficult, but I am getting stronger because I am allowed this grace.  This grace of easing back to work and living life on my terms.

 

I am in a position of starting over again and damn grateful to be here.  What I do wonder about is people not as lucky as I.  Yes, I am living check to check, but there are many struggling to feed themselves and their own families.  Today, our federal government did not pay its disabled veterans because a few people were mad about a law that passed in 2010, causing our government to shut down.    This does’t effect those in government who don’t count on benefits to pay rent and buy food.  No, this trickles down to the veterans they use as props.  They claim they support this country’s veterans.  Their actions show their words to be untrue.  They claim to be Christian, yet the first group of citizens they throw under the bus are veterans, the elderly, the sick and the poor.

 

I’m going to sleep now.  I hope when I wake up, this will have been some bad dream.  But I am pretty sure that those who forced and encouraged this shutdown, are home in their beds sleeping.  They sleep because they have no conscious.  They will set out this morning but not to the buildings to do their job and govern.  I bet the -$113.00 in my bank account, their first stop will be to the morning talk shows, to blame Obama for what they have created.  And  continue to “thank” our county’s veterans by continuing to hold us hostage.

Forgive me for not editing.  I’m too tired.  I post this urgently because  I hope that someone reads it and understands we need to move forward to work together.  To understand that compromise does not mean, “My way or the highway.”  I hope that this post can inspire someone who can stop this madness,  and work in the interest of the people they are supposed to represent.   This is a message to elected officials who can stop this,  from those of us who don’t have car services, assistants or  lobbying firms to speak for us.  Please release we the hostages, so that we may go back to being we the people.

 

Thank you.

 

 

Edited for correction October 1, 2013, 8am

 

This morning, I woke up and checked my bank account at 7:30.  It was still in the negative.  I had a glass of water, took my dog for a walk, returned and checked my bank account again.  My Veteran’s benefits had been paid!  I’m not sure what happened.  I have been paid my veteran’s benefits by 12:01am since 1996.  Not sure what the delay was.  Somedays, it’s great to find out that there was a delay and not a complete non-payment.  I have no idea what happened.  Maybe it was a glitch in my account.  Maybe they paid everyone late.  My biggest hope is that somehow, this drama stops and we can get back to the business of governing.  


My son is coming home for the weekend.  I need to do the dishes and get the apartment ready, so of course, I sit down to write.  Why is it I feel so inspired when it;s time to do the dishes.  Oh the the quandary of a writer!  *Places back of hand to forehead and retreats to fainting couch*

 

I’m using hard plastic splints to progressively open my hands.  These splints were formed around theshape of my hand and every now and then they are adjusted to extend my fingers even more.  When using plastic splints in the past, my skin would break down, resulting in slow healing MRSA infections.

 

 

So, you all remember my clawed hands,  right?  (What?  You don’t.  That’s okay, check this out on Utube It shows how I type, but you get the point.)  I have to get going, but I will leave you these “action” shots of me opening the front gate and my splint.  And yes, I did my Austin Powers impression while shooting this… and I’m spent.

As a side note, as soon as I am able, I will be visiting the San Diego Veteran’s Hospital OT department, who in 1999 my hands were hopeless.  And by able, I mean able to extend my middle finger.

 

Have a great Friday all!

 

 

 

 

 

 

Want to learn more about Scleroderma?  Start with  The Scleroderma Research Foundation 


Want to help find a cure?  Visit Bounce to a Cure.

 

This blog prefers donations go to research, patient education and caregiver support, so I have a store with products I use and recommend.  Want to buy some awesome botanically based  french skin care & makeup?  Visit my Store! 


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…