VA Secretary’s Comparison to Disneyland Is A Gift

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

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

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

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

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

Why I’m Not Angry Cancer Gets More Attention Than Scleroderma

 

 

Of course I wish scleroderma got the awareness and funds cancer “enjoys”. I’m not angry and I’m going to tell you why.  I am also going to offer suggestions to help you educate health care providers and the general public by recognition and comparison.

Why is cancer so infuriating to patients with rare diseases?  Well, obviously, people have heard of cancer.  It occurs more in the general population.  I have seen many statuses and comments sharing frustration and anger about how many other diseases get more publicity and funding than #scleroderma research. Since 1994, I too have been frustrated about how everyone pays more attention to cancer. In 1999, I thought that I would rather have #cancer, because at least most doctors know what cancer is, and how to treat it. My frustration eventually turned into action.

I decided to learn more about cancer to see if there were similarities I could compare to scleroderma and share using both cancer and scleroderma as search words.  What I found and concluded, surprised me.

I made some interesting discoveries. Cancer research and patient care, have provided caregiver models, and education programs.  Some cancer drugs are used in lower doses to slow down the disease process in autoimmune diseases by immuno-suppression,  like methotrexate.

Cancer research has also brought us the infusion clinic.  Because I have infusions of a powerful immune suppressant drug every eight weeks to accompany my dose of methotrexate, as a non-cancer patient, I still benefited from cancer research and patient care.  More people get cancer, and many have difficulty when IV’s are needed.  Not only did I get the best nurses for difficult IV’s, I also received education from these nurses about how I could benefit from a power-port.

Okay, what were we taking about? 
Cancer research has helped lead the way in the care of chronically ill patients.  Yes,  scleroderma and other patients with other illnesses, have benefited from treatment and care of cancer patients.  But wait, cancer isn’t the only condition that helped improve patient care.  How about the care of individuals who are paralyzed by stroke or injury?  There’s some rehab crossover.  How about Diabetes?  Yep, the care of diabetes patients has benefited many a scleroderma patient when it comes to Raynaud’s in feet.  It makes it easier to get insurance to cover orthodontic inserts, because the diabetes is familiar and when a podiatrist says, “We see this in the feet of diabetics, and treat it the same.”  Of course there are many differences, but by pointing out similarities in a rare illness to one that’s familiar, it makes it easier for the person you are teaching to learn and recall.    General practitioners know that poor circulation causes infections and amputations of limbs.   If you are the scleroderma patient and a doctor recognizes a symptom from an illness they know, about that is the scleroderma patient’s opportunity to compare scleroderma (or insert illness here) the similarities to scleroderma.    That will help that doctor recall scleroderma from the Rolodex# in their brain.

Here is one way I use recognition:
My quick answer for decades to the question, “What is Scleroderma?”
My short answer, ” Scleroderma is an autoimmune disease in the same family  as Lupus & Rheumatoid Arthritis, except it affects connective tissue.  You know how there are different types of cancer, there are different types of autoimmune diseases.”

I know, it’s not all that short, but it’s as short as I can get.  Recognition of Lupus or RA helps.  If someone hasn’t heard of those, I add a blurb about diabetes.  I will say something like this:
“You’ve heard about diabetes, right?  Diabetes is also considered an autoimmune disease. “

Most people are surprised by that information.  They recognize diabetes, and now you’ve connected scleroderma to diabetes.  Just like throat cancer is different  

In other words, those who named cancer did well for marketing purposes.  No matter what kind of cancer one has, everyone knows about cancer.

So when you see all the pinking going on and awareness campaigns of cancer , or more well known causes year-round, do some research.  Find similarities between the progress in patient care and how they have benefited scleroderma patients, in small ways or tremendously.  When you do something like that, it also gives you a way to join the conversation about a more well-know disease and even help other causes by sharing their fundraising information.

Now you’re probably thinking, “Did Karen just say I should share information about more popular causes than my own?”  Yeah, I am and here’s why:  Research breakthroughs and progress in other illnesses, benefits research in other areas.   One example is Benalysta for Lupus.  Benlysta was approved by the FDA for the treatment of Lupus.  Oh wait, it was THE first medication FDA approved for treating Lupus.  As I write this, there is research being done to find out if Benlysta can be used to effectively treat scleroderma.  (See what I did there)

Another idea is a compare and contrast.  Remember my post about how a woman I spoke with at Social Security who thought scleroderma was a skin condition?   Well, find a skin condition, learn about it and understand the similarities and difference, so that you can have a better reply to the “skin condition” thing.

Anger from cancer getting more attention is definitely warranted, but based on my experience, acting in anger is not the best idea. I think as a community of scleroderma patients, if we can take the conversation outside the scleroderma community by relating experiences in common with patients of other illness, we can get the word out faster.  A rising tide lifts all boats.  Research progress helps the illness community over all.  We can go back and forth for days about how one is worse than the other, but all illnesses suck.   Awareness is useless if we don’t teach anything along with it.  And teaching does not include photographs for shock value, but that’s a whole other post.

Thanks for reading! -K

 

FOOT NOTES

**At the time, I lived in Murrieta California and Loma Linda was my Veterans Healthcare center.

** When pain or anxiety hit me, I am not shy about asking for them, in spite of the stigma of “depending one them”.  Pain medication lowers my anxiety, because it takes away or dulls it to make it tolerable.  High anxiety makes my pain worse as well.  I have often been relived of joint pain and swelling pain, with anxiety medication, because I have a diagnosis of major depression and anxiety.  Many patients can attest to stress making symptoms worse.  I ask for these things with the risk of stigma in the back of my mind.

*** Before I stopped my doctor, I assessed his surroundings and mannerisms, to determine he was not rushing to a crisis.  Also, if he was on his way to a crisis, he would not have stopped to speak with me.  When I am in pain, or during a crisis situation, I have an unusually clear head.  It came from two decades of experience.  It may sound rediculous that someone in so much pain, has such a cool head, but please keep in mind I have 20 years of advocating for myself.  I have driven hours for care while in excruciating pain.  And when I say I have driven hours, I mean I was driving the vehicle.  I have learned calming techniques to be able to speak on my behalf.  I will admit though, the longer the problem continues, the more the F bombs fly.

#If you don’t know what a Rolodex is, Google it you young whippersnapper.  And get off my lawn!

 

Getting The Full Picture

 

Ever notice things in a photograph, you didn’t see while you were posing for the picture?  Here is what I have learned about my own behavior and mental health with a “photograph perspective”.

Finding the right antidepressant is no easy task.  So when we find one that does the best job with no side effects, or manageable side effects, it’s like someone threw a dead tree in your path, and the only way is to climb over it.  Of course, after taking a medication for years, I don’t always keep up with updates.  Every medication is not for everyone.  It’s a fact and quite honestly, it seems like common sense, but most of us never read labels.  Think about it.  Labels are updated as more information becomes available through research.  I don’t know if you are like me, but when I pick up a prescription I have been taking for years, I get a ten page document citing possible side effects and risks, and I hand it back to the pharmacy technician, and tell them to shred it.  I could wallpaper an entire housing development with all the medication information I have received.

Scleroderma
Side effects happen with all medications.

A few days ago, I was reading a blog post about a woman who quit Cymbalta cold turkey.   Sure I was a little shocked by someone talking about quitting a medication cold turkey with a possible side effect of suicide for some.  But this post by Crystal Lindell about Cymbalta, taught me an important lesson about how I form some opinions. I put down my iPad and started writing about how wrong she was, until I realized I was on a rant.  So I went back to her post, and followed links to her referenced prior blogs for more of her experience.

In an earlier post, she talks about how Cymbalta saved her life.  You should read it, 

Ms. Lindell’s post struck me on a personal level because my depression triggered by the pain and progression of my chronic illnesses changed the chemistry of my brain, and I nearly died.  Our experiences had similarities, but they were not the same.  I found myself comparing my issues to hers and thinking, “she’s wrong”, when it was I who was wrong.  Sometimes, I think I am using empathy, but it’s really not.  Instead of imagining what it would be like for them, I imagine what their experience would be like for me.  Yep, that sounds about right.  I make it all about me.  It kind of reminds me of “Do unto others, as you would have done to you.”  But most of the time, what might be right for me, would not be right for others.

I’m not sure if it’s because I am selfish.  For years, I have had to advocate for myself as a woman in a health care system designed for men (Veterans Healthcare) with two rare progressive, degenerative and potentially fatal conditions.  I realized I might be too self focused the day I brought my newborn son to his first pediatrician visit.  His doctor asked for my son’s medical history and out of sheer habit, I rattled off my own medical history.  It wasn’t that I put myself before my kid, it was just that answering that question had become so routine for me, I had an automated response.

I talk about it in a prior blog post.  and since seeking treatment for depression in 2000, I have changed medications many times. There were medications that put me to sleep, some that killed my libido and I have skipped doses of Cymbalta waiting for my prescription to arrive by mail and I can say that having sex during that time is pretty good, sex.  But taking myself off medication that did not reduce my libido, but my libido increased without them, was not worth risking my mental health.  Luckily, thanks to age and wisdom I know that  if I have amazing sex once, it can happen again.  So  I need to train my brain, so to speak.  Our mental state affects our sex.  The actual sex organ is our brains.  I know it doesn’t seem like that, but the response to it, is made by neural transmitters, nerves and hormones.  Look, if a medication completely shuts off your libido, like Paxil did to me,  it was the right decision for me, to change meds.  For me, Cymbalta had some side effects, but they were solvable with the addition of Welbutrin and training my brain.  The cool thing about that, is you can always find a willing participant (in the name of science, of course) to experiment with sex by trial and error.   And  as the brilliant Amy Schumer  put so eloquently, “…I can catch a dick whenever I want.”

For me, going off Cymbalta was not an option.  I did it for two months.  I handled the brain zaps and withdrawls with a little help from sedatives and pain meds prescribed by my doctor.  I was closely supervised by my psychiatrist and General Practitioner.  After two months,  the symptoms of my depression came back.  Lucky for me, I have a support system in place to check my depression.

When there is a change in my medication, or a potential trigger, I reach out to three people I would trust with my life, and ask them to watch for symptoms.  They don’t watch over me 24/7.  But they check in with me and ask me about triggers.

Triggers and Symptoms
I am diagnosed with Major Depression and Anxiety Disorder.  I’ve had years of therapy to determine my triggers, like specific people or events.  The people or events can be present, noticed and experienced without going into depression, but symptoms can be triggered by these events and or individuals.  Individuals do not trigger things on purpose, but we all have friends or family who bring us stress with their behaviors or conversations.  I had to learn to recognize the symptoms of the beginning of my triggered depression.  One of them I did not identify until 2004.  It was just after my son was born.  I was driving home with my sister in-law and my nephews and I had to drive on an overpass.  If you’re a southern California resident, it’s the one that takes you from the 91 east to the 15.  I was about to drive onto the ramp and I felt a nearly crippling fear of going on to the over pass, but because I had people in the car and it was in the middle of the night, I slowed down and drove extra careful.  I calmed down as soon as I was on the 15.  I had recognized this feeling before, but my fear was so intense, I knew I needed help.  I spoke to my therapist, and sure enough, an extreme fear of going over bridges is actually a thing. The depression had affected my “fight or flight” response by making it sensitive to activities.

Unlike Ms. Lindell, Cymbalta does not kill my creativity or sex drive.  I guess I’m just lucky.  Not every medication is for every one and not every pharmaceutical company labels their medication as accurate as they should be,  I have been on perhaps a dozen antidepressants in the past fifteen years.  There were some that gave me no sex drive, there are some that put me to sleep.  Right now, I’m on Cymbalta & Wellbutrin, with no sedatives.  I have some, but I don’t take them.  I guess it’s comforting to know they are there.  And I have to agree with Ms. Lindell that exercise is the best medicine for my pain.  But to battle my depression without meds, I need to do at least ninety minutes of cardio twice a day to keep me from falling into the abyss.  So exercise once a day and meds is a good mix for me.  Cymbalta may not work for millions of other people, but right now, it works for me. And when Cymbalta stops working, I will tell my support system what’s up.   I don’t need to be watched like I’m under  house arrest.   But by letting my friends know,  they are more likely to answer my phone calls when they are busy, or return my call immediately if they miss it.  There’s nothing wrong with having a plan.

About the good sex:  Well, I went from having no interest in sex because of my meds, to finding the right med that would allow me to feel like I might be interested.  It took changing  medication, yoga and exercise that helped and now my sex life is pretty damn good.  Like anything, it’s trial and error, having a good team of doctors ad having a willing participant to help with training your brain.

As for quitting any antidepressant cold turkey, I would not encourage anyone to do that without a doctor’s supervision and a group that will help observe your progress.  You don’t need to make a big deal of it.  Take three people and use them.  I never use only once person,because one observation, could be the wrong observation and two others can help counter the error.  One way to think of it is, when you are getting your picture taken, you really don’t know what’s going to show up in the photograph, until you can look at the picture itself.  Those three friends of mine help me identify what I can’t see while I am present in the “picture taking”.  It never hurts to have an extra set or two of helpful eyes.

Scleroderma Is A Terrible Name

Scleroderma is an autoimmune disease.  Healthy cells are mistaken for unhealthy ones, and the body attacks itself.  Not only is scleroderma a difficult name to remember, it is also a Greek word that means: hard skin.  Because of the name, people mistake scleroderma for a skin condition.

When a doctor told a patient that he or she had scleroderma, it was usually followed by a statement like: Get you’re things in order, you don’t have long.  For a long time, that was true.  Now, thanks to research, there are treatments available to help patients survive the progression of scleroderma by treating a patient’s symptoms.  Scleroderma is different with every patient.  Some have Diffuse Scleroderma or the “fast and furious killer”, or Limited Scleroderma, which progresses slowly and in spurts.  Many patients die of complications of this type.  Then, there is the overlap kind.  In addition to scleroderma, a patient  can have  another autoimmune disease like Lupus, Fibromyalgia and any of the dozens of other autoimmune diseases that manifest slowly.  Often not receiving the proper diagnosis because symptoms have not yet appeared, or the patient’s medical team does not know enough about autoimmune diseases to diagnose properly.  Often resulting in the Limbo of illness: Mixed Connective Tissue Disease, or MCTD.

I was diagnosed in 1994, at the Madison Veteran’s Hospital.  The Veteran’s Healthcare System was originally  designed for aging men.  So not only did my medical team have limited research about scleroderma at the time, I was a woman and they really had to work hard to make changes to accommodate my treatment.  They did not know I should have immediately been placed in an occupational therapy program to prevent my hands from becoming severely damaged and impaired.   They did not know to inform me about symptoms and warning to watch for, so I didn’t have to loose part of my thumb.  They didn’t know that my additional symptoms were really sarcoidosis, and not scleroderma symptoms, proven by an outside provider after taking months of ER chest CT scans to UCLA’s pulmonology department, three hours away paid for out of my own pocket and private insurance I could only receive at the time because my husband and I owned a small business, and as an employee could not be turned down because of pre-existing conditions.  Yes, many people I met in the 1990’s are surprised to still see me alive.

Now that denying insurance coverage because of pre-existing conditions is now against the law, patients with scleroderma are receiving life-saving and life-extending treatment, but many patients in areas that are not near a major city like Los Angeles, Chicago and Minneapolis, patients are still getting misdiagnosed and dying because of it.  How do we solve this problem?  With medical provider education and patient education.  Of course, money is the biggest help because that funds research and treatment.  All of these things are happening, but we can do so much more.  Scleroderma needs better marketing.

T-shirts and teal bracelets are not enough.  A pretty color, a shirt  and accessories is not enough.  Scleroderma needs a new name and  I have the perfect name.  One that embodies the surprise of the uncommon scleroderma symptoms. A name that expresses the pure frustration of scleroderma patients, in addition to the terror they feel when they experience trouble doing something we all do without thinking; like swallowing and breathing.  I think you will agree this name, fits.

Scleroderma needs to be renamed, “Whisky-Tango-Foxtrot”.

It’s easier to say, easier to remember and let’s face it, you can’t forget it.  It’s obvious why, but I’ll explain it in one simple sentence. It’s easier to Tango or Foxtrot after some whiskey.  (By the way, did you know there are two ways to spell whisky?)   Not everyone likes whiskey, but who doesn’t like dancing, or watching someone dance?  See how easy that is?  Whiskey Tango Foxtrot.  Rolls right off the tongue.  So let’s not just raise awareness, let’s educate and get the word out about this debilitating, progressive  and degenerative disease called scleroderma and rename it Whiskey Tango Foxtrot.  Because I know when I first heard the word scleroderma the first thing I said was, “sclero-what?”.  End sclero-what today, because the best way I know how to express what scleroderma has made me think of the most is, “WTF?”

 

Scleroderma
What did you think of when you first heard scleroderma? This sums it up for me

 

June is Scleroderma Awareness Month

 

a·ware·ness

əˈwernəs/

noun
  1. knowledge or perception of a situation or fact.
    “we need to raise public awareness of the issue”
    • concern about and well-informed interest in a particular situation or development.
      “a growing environmental awareness” – GOOGLE

There were 27 diseases that had an awareness month in May. There are 13 in June on the list, but there are at least three missing that I know about.  Truth is, there are not enough colors to represent the amount of diseases that need cures. In July, scleroderma patients will watch the T-shirt colors change like the leaves in autumn.

Every store I go to, asks if I would like to make a donation to whatever cause they are fundraising.  Their causes are no less valid, but like many, I decline donating with a guilty tone in my voice.

People will say things to me like, “I could never be as strong as you are.”, about how I deal with obstacles they can only imagine.  We all have obstacles to overcome.  They are as different as night and day, but they are obstacles.  Of course people are as strong as I am.  Maybe they have not yet been tested, or maybe their coping skills are much different, but there is no “better”.

It has been said to me that, “at least you don’t have cancer.”  Maybe.  Maybe not.  There are treatments for cancer that are already mainstream.  There are an increasing number of options for Scleroderma treatment, but like many illnesses, things are tried based on how they work with other illnesses.  For example:  Most scleroderma treatment suppresses the immune system, to slow down progression, called immunosuppression.  The medications used for immunosuppression are also used in treatment of cancer and organ transplant recipients.

You and I are both aware of scleroderma.  It’s not enough to wear teal and do a fundraiser, but it helps.  Non-profit organizations that conduct research compete with other non-profits.  Not out right, but think about it; they are competing.  People donate money to a campaign they care about.  If it’s not someone they love, those organizations have to advertise to get donations.  It’s not good or bad, it just is.  I am more likely to donate to scleroderma research than cancer.  I am also more likely to donate to The March of Dimes, because their work directly effected the outcome of my pregnancy and saved the life of my son and I.  Just like everyone else, I donate to causes that matter to me.  Yet I can still become absolutely furious in October because the world turns pink.  The money used for merchandise could be put towards research and assistant programs.  But without merchandise, people won’t donate.  We like to feel good about doing something, and nothing seems to make us feel better than wearing something that tells the world we did something.  I do it.  You do it.  It’s very American.

Now, after 21 years since my initial diagnosis, and 25 years after onset of symptoms, I’m still here. My hands have contracted, I’ve lost range of motion in parts of my body and my lungs are scarred. I’m still here, and functioning very well. As irritated as I get about merchandise, I would not be here.  That merchandise has funded research that has saved my life and will save the lives of many more. I am taking medications now, that had I been diagnosed today, would have saved my hands, or at least the tissue that was destroyed by severe raynaud’s phenomenon.  I hate awareness, but without it, I’d be dead.  Awareness inspires action.  Please do something this month to teach others about scleroderma.  Thank you. -K

 

 

 

Scleroderma Does Ugly Things to Beautiful People

Yes.  Scleroderma does do ugly things to beautiful people, and me, too.

Photo by comedian Brendan Cooney, co-host of The Bunny Ranch at Karma Lounge. Yes, I am wearing yoga pants.

When I began this blog, my intention was to raise awareness of scleroderma.  I’m going on my sixth year with this blog, and awareness is not enough.  The truth is, scleroderma is an ugly disease.  It doesn’t directly affect breasts, and the damage done by scleroderma is shocking to those who are completely unaware.   I know, no one wants to hear that people aren’t paying attention because there is no high-level celebrity that has it, except Queen Latifah’s mom.  Here are some things not being covered, even by foundations.  Not because they don’t want to, but because they are too busy researching and assisting patients and their families.

There are so many things that bother me about awareness campaigns.  First, small independent patient communities, not affiliated with research or patient advocacy, raising money for swag to fund their advertising which includes a bunch of prayers and stupid bracelets.  I’ve had scleroderma for twenty-one years and not once has a stupid bracelet made me feel better.  How about skipping the middle man and sending that two bucks you paid to look like you made a donation or care about scleroderma, directly to research or patient advocacy.  Or maybe something like a scleroderma patient’s cleaning service.

Unless you are dying or rich, scleroderma patients do not qualify for cleaning services, without having a home health nurse.  Don’t get me wrong, many patients need full time care.  But for those who don’t, like me, the last thing I want in my house is someone dressed like a nurse, who has to stay for three hours twice a week, cleans my house half-assed because she’s there for healthcare and of course hear about all her personal problems (I’ve had this done with three “helpers”.)  The last time, when I was released from the hospital after forty-five days last year, the VA granted a home health care assistant.   Eventually,I had to schedule myself to be home three hours, twice a week so she could help me clean.  Of course, she was there for healthcare so getting her to clean was like pulling teeth, so that didn’t last long and I resumed my own cleaning. All I needed was someone to come by once a week for an hour and a half and do the heavy cleaning in my house, then get the f*ck out.  I didn’t need companionship, help dressing, eating, bathing, even though I had to stay off my foot.  Just clean the bathroom, kitchen floors, change my sheets, not even do laundry.  But no, the VA doesn’t do that.  Everyone is so busy looking for fraud, that people who could use a little help now and then have to wait until they are injured, or worse.

And then there are people who tell me, “ask your family to help.”  First of all, I live near none of my family.  I live near a health care facility qualified to take care of my medical needs.  Also, that would require me to live near my family.  One family member even told me I should try assisted living.   I get home from comedy clubs at two or three in the morning, and I drive myself.  Look I may have stayed in the hospital forty-five days, but I did not go without a booty call.  I had two during my stay. I got away with it in a hospital, because nursing stations are busy at shift change, but in assisted living,  someone’s going to notice my room mate sitting in a wheelchair outside my room for at least an hour to get the return value on  that Brazillian I pay for every month.

I’ve done my time laying around in pain waiting for medications to be developed to cure scleroderma and sarcoidosis.  The diseases have  run their course.  My lungs are scarred, I have lost mobility in my hands and I still deal with chronic pain.  For me, the worst is over.  I no longer wish to raise awareness of scleroderma.  I want to make patients aware that if they can just keep fighting, and  remember to start fighting again when giving up (I’ve given up plenty of times), that there can be life with scleroderma.  Right now, you might be fighting to breathe.  There is a chance you can make it through this, and if you do, there is so much life to live.  Look, there will always be a time when our bodies will tell us we are ready to move on, that it is time to not give up, but accept that it’s time to leave this life behind, scleroderma or not.  For those patients out there wondering how they can live with the damage, it can be done.  It will take work, there will be disappointment and there will be some success.

The only thing I hate more than having scleroderma, is when someone tells me they are sorry.  I know people don’ really know how to react, and maybe patients appreciate it when hear someone is sorry they have scleroderma, but not me.  It doesn’t anger me, it enrages me.  It’s not that I don’t appreciate them feeling something, but sympathy?  I’m not dead yet, Mother F*cker!  And it usually in a doctor’s office where I am trying to get routine care so I can maintain my health.  I don’t want sympathy from a healthcare provider.  How about some empowerment with care that encourages me to be active?   Luckily, I get that at The West Los Angeles VA Hospital.  I also got it at Loma Linda.  Long Beach sucked.  (That’s my review of those three hospitals.)

So that is my ugly, honest rant.  It’s how I really feel about fundraiser drives to support advertising and teal-wearing and showing pictures people without scleroderma will scroll past on Facebook because it is so shocking.  Hell, I scroll past a picture of a scleroderma patient clearly suffering.  It sucks.  Not as much as having the scleroderma, but it’s definitly hurting the fundraising.  Save the Tatas, raises money because people love to see boobs.  Groups who post the worst and seek sympathy, shock people away from  learning about scleroderma, because to someone who doesn’t have it, it’s hard to see.   I know, it’s not what any of us wants to hear, but does that make it any less true?

 

Scleroderma Project: Beneath The Surface, Should be Seen by Everyone.

 

The title of my last post is, “I Hate The Documentary, Project Scleroderma: Beneath The Surface”.  I thought about changing the title, but I have decided to keep it, and follow up with this post.  I take you on a scenic route to my point, so feel free to jump to the paragraph that is headed in bold type, for my point.    There is nothing simple about scleroderm.  Every patient is different.  

The documentary itself, is a labor of love by those who created it.     I have seen clips and is very well done.  This documentary

See Project Scleroderma. Learn about scleroderma and share link with friends.

is needed because it informs and educates.  What I may have failed to relay in the last post, is that in addition to my denial,  I hate the lack of education throughout the medical community.    And then there is the issue of  spell check here in this Word Press program, that insists on auto-correcting scleroderma to sclerosis.  I’ve been acutely ‘aware’ of scleroderma for over twenty years.  To say that I am beyond frustrated about how little people know about scleroderma, is an understatement.  Luckily there are people who care enough to donate their time and money to amplify the voices of those with scleroderma.

For twenty years, I have been raising so-called awareness.  Friends and family “like” my blog’s Facebook Page, but never share my posts.  I wouldn’t mind that so much if they weren’t so quick to share every Bible verse or “Save the Tatas” meme.  I haven’t had the guts to say this to friends and family, until now.

Dear Family and Friends,

Thank you for asking me how I’m doing and offering to help out, but I would really appreciate it if you would follow up with action like sharing things from my blog- or at least reading it.  These memes that you post like “Share if you agree cancer sucks”, seem nice.  But I think we can all agree you are sharing the obvious.  How about sharing something about an illness that few people know about like, oh I don’t know.. maybe scleroderma?  It’s great to see all your selfies at breast cancer runs and the swag you spent a ton of cash on, but when I post about fund raisers why is it so quiet?  Seriously all you have to do is share and donate a dollar when there are fundraisers.

There are many of you who do, but you know who you are.

XXOO

Karen

This post may be too honest, but it’s not like anyone reads my blog anyway.  I have avoided speaking out to friends and family on Facebook, because I don’t like to complain, and let’s face it:  More people have been affected by things like breast cancer.  But just because another disease gets more ink, that doesn’t mean I shouldn’t speak up every now and then and say: Ahem.. Over here please!

Yesterday, I posted about hating Project Scleroderma:  Beneath The Surface.  And if I can express my feelings about dreading to watch the documentary spearheaded by a woman who lost her mom to scleroderma within four months of her diagnosis, it would be irresponsible of me to be honest to strangers and not my friends, family or acquaintances.  What it boils down to, I hate having something no one else has heard of.   I hate that people share something every day about cancer or God, but rarely share about scleroderma.  I hate being a scleroderma patient.

Scleroderma: Beneath The Surface, will help spread the word about scleroderma.  Every day, I am reminded that there is very little publicity about scleroderma.  I was recently told by a customer service representative at the Social Security Disability office, that her understanding of scleroderma is that it’s a skin condition.   I wasn’t rude about it, but I did explain to her what scleroderma does to a human.  That it’s far more serious than a skin condition or rash.  She was shocked, and I was encouraged by her willingness to learn.  I was both encouraged and annoyed that someone who works with disabled Americans, thought scleroderma was just a skin condition.  Just thinking about it, makes my hair hurt.

Just because scleroderma doesn’t  have the coverage breast cancer “enjoys”, I do not want to diminish how serious breast cancer is, and how its publicity has saved lives.  Of course breast cancer continues to kill men and women and still there is so much to be done.     Many organizations have made progress because of generous donations.  What I see in addition to this great work, is a new industry, and that is something I am not fond of.

We don’t have to agree about everything, but we do agree scleroderma needs to be cured.
So many wonderful  Americans,  found ways to fund treatment for patients who could not get it, with fundraising.   That is a wonderful and selfless accomplishment.  And somehow, all of these good intentions have created the Disease and/or Cause market of swag.  We all love swag.  I don’t know about you, but swag that tells me I’ve done something good gives me a warm and fuzzy feeling.   Swag needs to be manufactured, marketed and sold.  Swag has become profitable when added to big named brands.   Do you really believe the National Football League would come out with all that Pink merchandise, if they did not profit from it?

I think it’s wonderful when communities come together.  Meanwhile, many individuals who belong to these communities, complain that giving all citizens access to healthcare, no matter what they could pay, is wrong because it’s socialism.  Now, before you stop reading this post because I do argue for universal healthcare for all in The United States, hear me out.

People have told me for years that I deserve the best, because I am a veteran.  I disagree.  I deserve the best because I am a human being.  I believe all who are in the United States should have access to the care they need, not what an insurance company or government program is willing to pay for that specific care.   Sure, I’m a veteran and I have scleroderma. But wouldn’t my family feel that I deserved the best possible care if I were not a veteran?  What if I was you daughter, sister, wife, mother or child?  Would you still feel that it would be okay that  I am denied treatment because I cannot pay for it?  I am also arguing is that veterans have friends and family,  they would like to see get the medical treatment they need.  (One, two, three, what are we really fighting for?) I have had access to the greatest treatment at the time, for scleroderma after fighting in both the VA system and private sector with what was nicknamed, Golden Insurance.

When things were going well for the business my ex-husband and I owned in the early 2000’s,  I chose the company’s health insurance plan.  Back then, no matter how much money my spouse made, no insurance company could provide the comprehensive coverage I needed, due to my pre-existing condition of scleroderma, unless I was employed.  So, I worked from home and chose such a comprehensive package for our company, it was one of the many reasons our company went bankrupt.  I already had access to great care at Loma Linda Veteran’s Hospital.  The Chief of Rheumatology told us that my prognosis was getting worse.  That if we had private insurance, he would recommend me to a colleague who just happened to be the Chief of Rheumatology at UCLA Medical center.  That admission of, “I don’t know what to do next, but I’m going to find someone who might”, saved my life.  I owe my life to this great rheumatologist who knew the difference between doing what’s best for his patient, and doing only what he could.  Of course, my ticket to the land of affordable second opinions, was money.  (That reads funny to me as well, and it’s not my grammar.)

If I did not have insurance, my rheumatologist could have referred me to the West Los Angeles VA, which could have taken months.  Meanwhile, Veteran’s health Care was overwhelmed with casualties returning from Iraq and Afghanistan.  The Veteran’s Healthcare system was already overcrowded and underfunded before two wars.  My yet to be diagnosed sarcoidosis was simply written off as a symptom of scleroderma, and nothing could be done.  So my appointment with a UCLA associated rheumatologist might have taken as long as a year to be seen.  My difficulty breathing was dismissed by local doctors and emergency departments in Murrieta and the Loma Linda VA hospital as a symptom of scleroderma.  I know this because these things were written in my medical records by whatever resident doctor in the Emergency Room was, who just happened to have little experience with scleroderma patients.  At UCLA, my biopsy was expedited because after my pulmonologist at UCLA reviewed several of my chest CT scans from other facilities, he read in the notes that I should have further testing for lymphoma.  Following the recommendations of the radiologist’s report of these scans, was a another note commenting the testing for lymphoma results was unnecessary because I had a pre-exisiting condition of scleroderma.  The pulmonologist at UCLA ordered a PET scan and the lymhnodes in my chest lit up like a Christmas tree on steroids.  There had to be a biopsy done, because everything pointed to cancer.  A biopsy of my lymph nodes and lungs were done less than two weeks later.  Granulaomas known as sarcoidosis, were found in my lymph nodes.  This discovery was huge.  My rheumatologist at UCLA ordered a medication that my Golden insurance company and Veteran’s Healthcare formulary, both required the failure of two other drugs before using Remicade.  So, my rheumatologist provided the golden insurance company evidence to support my need to skip right over the formulary, and allow for Remicade.  It took some time, but in less than six weeks, I received my first infusion of Remicade at my local hospital in Murrieta, not eighty-five miles away at UCLA.  The cost was $22,00o per infusion.  (Yes, that is a five-figure number for one dose of medication that by the way, saved my life.)

There is no way of knowing for sure if the Remicade stopped the scleroderma from hardening my lungs or the sarcoidosis from making my lymhnodes so large, I would be unable to get the proper amount of oxygen in my blood and my heart would fail.  What I do know is that eight years after my diagnosis of sarcodosis, I maintain a stable prognosis.    My treatment with a medication that was $22,000 a pop was transferred to the the Veteran’s Hospital at Loma Linda.  The rheumatologist who ordered it there, the Chief of Rheumatology presented evidence to counter the formulary restrictions, based not only what was provided to my Golden Insurance’s formulary, but my progress since the treatment began.

There is a continuity of care requirement for medications that are benefiting a patient when there is a change of insurance.  I was not able to stay on Remicade because simply because I was already on it.  There was a record the Golden Insurance company had, of the valid research backing this decision, and there was evidence that in my case, no matter what was being suppressed by this strong immunosuppressant, the drug was working.  At this time, there is no way to know of knowing what Remicade worked to fix.  I am one patient with both scleroderma and sarcoidosis.  Both chronic illnesses are rare and I have yet to know of another human with both.  My rhumatologist at UCLA, who is a leader in scleroderma treatment around the world, just recommended what he thought would be best, based on research that existed at the time and his experience.  (The world reference is not an understatement. My doctor is **Dr. Daniel Furst.  Go ahead.  Google him.  We’ll wait…)
But what does this have to do with a documentary about scleroderma?
I live in Southern California.  My location alone, allows me access to doctors who have experience with scleroderma, and/or who are actively overseeing and doing scleroderma research.  The Veteran’s Hospitals in highly populated areas like LA and Loma Linda are teaching hospitals where young minds go to learn and make progress in treatment and diagnoses because they are med students working with those who teach, do research and have mountains of experience and work, they can build upon to improve care.  Teaching hospitals are where progress in treatment are made, and save lives.   UCLA doctors and faculty are the specialists who see patients at the West LA VA.  Not everyone has as good an outcome as I have had.  I am aggressive when it comes to my care.  Being able to fight for my care, and get it, has a lot to do with my location.  If I lived in Bakersfield, I would have to drive, or take a bus provided by the VA, to see doctors at the West Los Angeles, VA.  Why do I know this?  Because there are not enough facilities for veterans to get the care and specialization they need in Bakersfield.  They travel to LA.  This is nothing unique.  When I lived in La Crosse, Wisconsin, I had to travel three hours by car, one-way to get the care I needed.  At one time, I lived across the street from a hospital that consulted with the Mayo Clinic.  Yet I still had to drive three hours one way to see a rheumatologist my VA Healthcare would cover.

Doctors need to be educated, and get the most current information and resources available to treat their patients.  Patients should not have to cut medication in half so they can get almost the right dose they need, to save an insurance company money.  In fact, insurance companies are the consumers to pharmaceutical companies.  The statement: “Cutting medication decreases the cost to the consumer”, is incomplete.  Sure, it does cut the cost to both patient and insurance company.  Production of medication using the same dosage, increases the profit a pharmaceutical company makes because it does not have to pay for the production costs of a smaller dose of the medication.  So we’re inconveniencing and sometimes hindering the care of  patients to save a buck.  Someone has to make a sacrifice, and it’s going to be a company who answers to shareholders.  The company or insurance company does not serve the consumer (patient).  It serves the bottom line and it’s shareholders.

From my perspective, medication is viewed as a luxury item, by those who don’t need it.  Medication is not a luxury item.  Medication extends, improves and saves the lives of We The People.  Should anyone be denied lifesaving treatment, simply because they cannot afford it?  No, but this has become The American Way.  Because providing healthcare to all that is paid for by the Federal Government would be socialist.  Yet aren’t we entitled to “Life, liberty and the pursuit of happiness”?  No, because for some reason it has become the norm to deny people medical treatment they are unable to pay for, and allow them to die.  Wait, I know the reason.  It’s because we want the freedom not to pay for people less fortunate, like those who are sick and disabled, taking advantage of hardworking Americans.  People have limited access to treatment and qualified practitioners.  When something the government creates to help those who need medical care but can’t afford it, many companies who benefit by profiting on expensive medication, spend millions to stop expanding care to people who can’t afford care.  Not because they are cruel, but because it’s in the best interest of the shareholders.  A company cannot be cruel or compassionate.  It is a company and exists merely to earn a profit, no matter how helpful they appear.  (Companies are not people, my friends.)

Finally, my point:
Scleroderma Project:  Beneath The Surface, needs to be seen to show that swag is not what patients need.  Sure, swag is nice and don’t we all look good in pink or teal on Instagram at the most recent Race for The Cure?  I’m tired of swag.  I’m tired of merchandise.  Why is it that the disease with the best lobbyists gets all the funding for research?  I would love to see less people dressed in a color for their cause, and more money going straight to research for their cause.  I don’t hate the documentary itself.  I hate what the United States has become and that we need to show people suffering slow, painful deaths to prove that research for scleroderma needs funding, and is not simply a skin condition.  So download the movie, watch it then share a link to it and say a little something about it when you do.  The world needs to learn about scleroderma.  Watching and sharing is what you can do to help scleroderma patients like me.

Download Movie

 

** Dr. Furst educates rheumatologists around the world.  If you would like to find a doctor near you, please contact the Scleroderma Foundation by visiting Scleroderma.org  and you will find a doctor closest to you that has proper experience and education.  Dr. Furst works with my team of rheumatologsts who treat me through the VA.  This is because of my geographical location.  

Be sure to visit Project Scleroderma on Facebook and like their page along with Scleroderma Research Foundation and The Scleroderma Foundation.  Thank you!

 

By Their Actions, Most Americans Don’t Support Veterans, No Matter What Their Car Magnets Say

Polished men and women in uniform are seen all over our country on billboards, TV and magazines.  Photographs of them incites pride in Americans, and have become a symbol of patriotism and service to country.  They truly are the best and brightest.

 

 

 

 

 

We love to see pictures of our service members bright and new.  Just like we love our flag.  We hang it in front of our homes with pride.  We remember to take it down every night at sunset if we do not have a light on our flag.

Then, life becomes a little more hectic, and we leave the flag out one night, without a light on it.  Then one night becomes two. Days become weeks, then months until all that is left is a faded cloth in shreds.  This is exactly how we treat our military and veterans.  We love them when they are polished, with faces full of hope and service.  But when they return damaged, they aren’t shiny like we remember and our interest fades.

The infamous Shock and Awe, did not occur in 2003.  It happened to veterans and their families when they returned from the war and were denied health care, or asked to wait for more than a year to be seen.    There are aspects of veteran’s health care that have been improving in the past decade.  The knowledge and technology exists to treat veterans and  improve lives of those injured or disabled.  Unfortunately, to fund what veterans need requires and act of Congress.  As Senator Tom Coburn of R-Oklahoma, gave us a great example how one senator can stop a bill passed unanimously from the house in the Senate.  Once again blocking funds to help veterans.

I am certain that most Americans do not want veterans to suffer, but it’s happening.    As time passed, the Afghanistan War, Iraq War and the troops they claim to support,  were pushed into the back of their minds.  Things got busy for them.  Maybe they don’t have time to find news about what’s really going on in Iraq and Afghanistan.  Maybe they work more than one job, and only have time to catch their local news.  With such a limit to free news,  they can easily recall more about Kim, Kanyaye and Kim’s ass, than the details of the H.R.5059 Clay Hunt SAV suicide prevention bill that passed the house unanimously, but was blocked by one senator, Tom Coburn R-Oklahoma.  Senator Coburn blocked it because, “.. it duplicated existing Department of Veterans Affairs programs and was not paid for by offsets elsewhere in the budget.”  (Military News.com)

That’s funny, in 2002, 2003 and 2004, while sitting in a Loma Linda Veteran’s Hospitals with a minimum two hour wait for scheduled appointments, the TV’s in the waiting rooms tuned to CNN and Fox mentioned nothing about cost offsets to fund a war.  In fact, their coverage of the ramp-up to both the Iraq and Afghanistan wars had an ESPN sports channel feel to it.  Then, when injured service members came back wanting care for the mental and physical injuries they earned in war, suddenly cost was the problem.  You see, it takes an act of congress to make any changes to VA health care.  Unfortunately, members of congress have constituents and donors to answer to so the information they are lacking to understand the need for funding goes ignored.  Well, ignored until something so horrific hits the news, it seeps between the Kardashian coverage and angers people with “Support our Troops” magnets on their cars.   Of course, the anger is short lived.  So congress can act like it’s going to do something, put a few bandages in place to give the appearance of doing something, until there’s another Kimyaye pregnancy divorce rumor.   Then, while everyone’s eyes are on KimYaye, they can block something veterans need.  Because like this flag, Veterans are great when they’re new and shiny, but eventually they will be left flapping in the wind, shredded and decaying.  Until another war of choice comes up, and just like the owners of this flag will go out and buy a new one to replace it, congress will fund wars that will provide a blank check for shiny new Soldiers, Sailors, Guardsman,  Marines and equipment.  Then funds stop when they need care the most.  Because that is how The United States of America supports its troops.

 I have been in the Veteran’s Heath Care System since 1994. Over the last ten years, I have been hearing veterans health care providers and staff use a phrase that is turning into mantra to ‘soothe’ veterans.  It’s not just one hospital,  I have heard it at three.   I have heard it said so many times, it almost overshadows the chaos and despair lingering in the halls.

“The Veteran’s Health Care System has a very large case load.  By jumping in line like that, you are delaying the care of your brother and sister veterans.  We all need to be very patient.”

It should not be a veteran’s problem the Veteran’s Administration is understaffed and under financed.  But the citizens of the United States make it a veteran’s problem.

As a patient who has put aside her fear of wasting a doctor’s  time in the emergency department or waited patiently in a specialty clinic waiting room for cancellations and no-shows,  I do not wish anyone else’s care to be delayed.  I do question the statement used to ‘calm’ veteran’s down by playing on their guilt.   I know we are supposed to be nice and share, but since when has good manners trumped health?   It is a well know fact that those who fight in combat, fight for their fellow warrior.  A veteran will fight, but if you tell them that that speaking up on their own behalf may hurt a fellow warrior, well that’s like shooting fish in a barrel.  The only thing that may stop a warrior from fighting, is if it will endanger the well being of another veteran.  It’s quite brilliant.  I’d like to shake the hand of the douchebag that came up with that gem, and punch them in the face.

Asking someone to wait in an overcrowded system seems like  a perfectly reasonable request, but not if someone’s  life or well being depends on it.  In fact, many after-combat problems like amputations or infections could be prevented with early intervention.   Is it the VA staff?  No.  I have met many who work in VA facilities that want to provide veterans with the best possible care, but often have to justify funds spent on an individual if it’s not something obvious like a heart attack.  And after making requests and being denied the resources to help a veteran, eventually the goal becomes to just keep the veteran alive until the resources are available.  Does that sound okay to you?  Allow me to rephrase that:  Would that be acceptable for your son or daughter, brother or sister, mother or father?

Americans do not support their troops no matter what their car magnets or Facebook statuses say.   The truth is, we’ll shop while you’re at war, and when you come back, we’ll ask you to wait for medical care.  Am I over reacting?   We did allow Congress to leave for winter break without financing programs veterans and service members desperately need.  If anything, I’m under-reacting.

Over the last ten years,  many Veteran’s Health Care providers have been asking veterans to wait for health care.  It’s nothing new.  Veterans have been fighting for benefits and care my entire forty-four years on this planet.  When I entered the VA health care system in 1994, it wasn’t about asking for treatment, it’s about solving the riddle of your own health to figure out how to ask the right questions to get the correct treatment.

I had to learn to set aside my fear of wasting someone’s time in n emergency department, or crash a specialty clinic like a college class and  wait patiently in a waiting room to take the spot of  a no-show or cancellation.  You know, veterans can be seen in Veteran Hospital Emergency Departments is they need to wait months for care.  It takes patience, but I have done it on many occasions and in at least one case, it has saved my life.   Veteran’s must not be guilt-ed into waiting for care they need.  If we really ‘support the troops’, why is the burden of sacrifice on veterans alone? The answer: Because on election day, they got in their car with a yellow ribbon magnet and flag sticker on their bumpers, drove past their polling place to get home in time to vote for their favorite contestant on American Idol.    I think this flag is a great representation of how by actions, the citizens of the United States really  feel about service members, veterans and their families.

Photo by Karen Vasquez taken from her car in Orange, California on Christmas Eve, 2014.
























Am J Public Health. 2007 December; 97(12): 2132–2142.

WAR & Military Mental Health

The US Psychiatric Response in the 20th Century

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2089086/

“Herbert X. Spegal,  one of the first psychiatrists to observe soldiers suffering from war neurosis in Tunisia, was convinced that soldiers were not primarily motivated by hatred for the enemy or the ideals of liberty and democracy, but by the bonds with their buddies and regard for their officers.”

 

He Told Us To Go Shopping, Now The Bill Is Due 

By Andrew J. Bacevich

Sunday, October 5, 2008

Washington Post

I’d Rather Have Chlamydia.

 

The week of October 5, 2014, I had yet another stay in a veteran’s hospital with another weird diagnosis.   It’s only a matter of time before I recognize  my case in an edition of Scientific American’s Mystery Diagnosis article.

Monday was busy, and Tuesday ended with a trip to the ER, presenting with neck pain and difficulty swallowing.  My neck felt like I had whiplash.  I hadn’t done anything to injure myself, and wrote it off as a strained neck from to much driving.  But something wasn’t consistent with pulled neck muscle.  It was like a bad episode of Sesame Street’s “Which One of These Things is Not Like The Other?”

I assumed it to was  allergies.  Which is stupid, because I knew better.  After twenty years as a medial anomaly, I just  knew better.  But I didn’t think anything of it until my cousin asked if I had any flu-like symptoms.

So I packed a bag, got in my car and drove myself to the ER.  I always drive myself because I hate taking people with me.  I end up feeling like I need to make them feel comfortable.  I get those worried looks, and I hate them.  It’s not their fault I view my ER visits as somewhat routine.  Mostly because I never let things get so far out of hand,  I couldn’t drive there.  I’d rather go to the ER and ‘cry wolf’, than ‘Suck it up, Buttercup’ until my condition becomes catastrophic.  I’m proactive that way, I guess.

I did notify my family I was going, which I hate to do, but I am also thankful to live far enough away they can’t just jump in the car and come to the ER.   Not because I want to leave them out, I just hate not having answers to their questions.  I view ER visits as fact-finding missions, in addition to emergency care.  I’ve been doing this 20 years now, and a trip to the ER is just normal to me.  Not because I have fallen through cracks in the system.  It’s because whatever the complication,  waiting for a doctor’s appointment in a specialist clinic, held once a week, is usually  not an option.

My greatest fear of living in Long Beach since the beginning of the 2014,  is that things might get so bad, an ambulance might be needed one day, and I would not be taken to a facility that is equipped with doctors who know how to treat a patient with scleroderma and sarcoidosis.  Instead, I would be taken to the Long Beach VA, for another botched diagnosis.

The  ER in West LA, appeared to have their act together.  Well, except that  ER nurse profiling me as a drug addict.  I made sure to tell his supervisors, but that’s a whole other post.

Back to the ER:  First, using a CT scan with contrast, observations of signs and notation of symptom,  I was diagnosed with a retro pharyngeal infection.  well, sort of- it was worst case, but there were missing symptoms specifically a fever and evidence of an abscess.  Luckily, I was fortunate enough to work with a team of doctors who were interested in answers, and getting them correct.  So, they followed the evidence.

I thought when diagnosed wasn’t  as bad as a progression in scleroderma or sarcoidosis.  Of course, it is a very serious infection that could be fatal if not treated in time.  But the doctors were a little puzzled.  I had swelling, but no fever and no sign of an abscess, which are both criteria for diagnosis.  I was still treated with antibiotics until the diagnosis could be proven otherwise.

I was seen by an ENT, who then requested a second CT scan with contrast, and later, that diagnosis was changed, thanks to the very capable rheumatology department and lucky me, my attending doctor in the hospital was a rheumatologist.  I think she is also the chief of rheumatology.  The diagnosis was changed to calcium hydroxyapatite deposition in the periarticular soft tissues of my neck.  In English:  Calcinosis in my neck tissue, specifically the tendons.

And there was a treatment.  And of course when the in-patient doctor told me the diagnosis, I of course asked to have the infection instead, because to me, anything scleroderma related in a new region of my body, no matter how treatable, in my mind is always the worst possible outcome.  Of course, I had a much better prognosis with calcinosis in my neck than an infection in my neck, but it was scleroderma and it took hours to get my head out of my butt over it.  (Seriously, what kind of an idiot would rather have an infection that a treatable symptom of a chronic illness?  Oh, right.  I’m that kind of idiot.) 

So I was given medication to break apart the calcinosis, kept on antibiotics just in case and my condition improved in about thirty-six hours.  I was sent home.  The very next day, I went to my high school reunion and had a blast.

And here I am seven days after discharge, feeling completely recovered, and packing my things to move to LA.  I wish I could stay in Long beach, but I cannot be guaranteed continuity of care at the Long Beach VA

Sometimes, I would like to have a gentler, familiar diagnosis instead of scleroderma.  A diagnosis other people have heard of,  like chlamydia.  At least that can be treated.  And when I tell people what I have, I would not have to explain it.  Everyone has heard of chlamydia, and that can be cured.

For More information:

Scleroderma Research Foundation 

Scleroderma Foundation

National Institute of Health

 

Forget Scleroderma. My Credit Score Is A Bigger Problem

Unlike most Americans with chronic illnesses, in addition to Social Security, I have Veteran’s Benefits.  This has put me in a unique position.  It is why I am not afraid to seek medical care outside the Veteran’s Healthcare System and put myself in debt.  It takes more than a bad credit score and overdraft fees to scare me.

 

Last November, I was in a hospital for forty-five days.  During that time, my car had so many tickets it was towed and repossessed by GM Financial because the impound fees were higher than what my car was worth.  It didn’t matter that I was in the hospital in danger of loosing my foot.  I was told by the City of Long Beach, that these fees could be waived, but I had to show up to the courthouse, in person.  And not when I was finished with my foot-saving treatment.  I needed to be in court tomorrow, because parking tickets are very serious.  And being in the hospital is no excuse for missing court.  I guess I could have gone, but I risked missing an antibiotic infusion, and an  injury that might cost me my foot.

I bet you are wondering where my friends and family were at that time.  They were helpful and supportive, but you know what?  They are not made of money, they also work and have children and need to take care of themselves.  As far as I was concerned, focusing on the care of my foot to prevent loosing it, trumped any concern about loosing my car, because cars can be replaced.

Of course, the phone calls from bill collectors never stopped.  One conversation went something like this:

Me:  “Look, I need two different antibiotic IV infusions, three times a day.  That is six infusions.  And if I so much as bump my foot, it could cause the infection to spread.  My doctors are trying to stop the infection from killing the bone in my foot, so I can keep my foot.”

GM Financial Customer Service Representative:  “I know you might loose your foot, but if you don;t go to court tomorrow and fight these impound fees, we will repossess your car.  Karen, I know you don’t want to risk having fees.”

Yeah, because a negative credit report was my biggest problem.

I swear this happened.   This GM Financial Customer Service Rep told me he thought I should be more concerned about saving my credit score, than saving my foot.  And GM Financial was not the only creditor who said this to me.  I only leave out other creditors because I’m too embarrassed to share the name  of one company.    I agreed to take on a predatory loan because it provided a short term solution.  I pay them every month because they will call my references.  I can live with paying ridiculous interest rates.  I can’t live with the stress of asking someone I know for a loan to clean up a mess I created.  And someone who loans me money might suggest I forgo care outside the VA, because I cannot afford to pay co-pays.  I’m on a first name basis with medical collection company customer service representatives, and that keeps me from worrying about judgement by friends and family.  I got myself into this mess.  And I may repeat my mistakes.  Not because I am stupid, but because I have changed VA hospitals twice in 12 months because I was shoved into the patient model of the 65 year old diabetic man, the treatment protocol by the Long Beach VA, outside the Women’s Clinic.   And that is a whole other post.

Like most things that happened while I was in the hospital, things like my credit score went on to a list called, “Things that can wait until after I make sure I get to keep my foot.”

I had been hospitalized many times before for infections in my feet, and I was not about to risk loosing my foot because of an injury I might incur while going to the Long Beach City Courthouse to fight the fees to keep my Toyota Camry.

I am not innocent in this, either.  I made my bed by not parking my car in the parking structure a half mile away.    A few days before I went into the hospital, I decided to use the handicap parking spot next to my apartment.  No one was able to get to my car before it was ticketed during street sweeping and then towed because it was one of two handicap parking spots.  Other people with disabilities needed it.  If I had a family member who needed that spot and I saw a car just sitting there for days with tickets on the windshield, I would ask the cops to tow the car as well.  Of course, I did not think about this scenario.

For some reason, bad credit scores and overdraft fees do not frighten me.  Maybe it’s because I have faced death so many times, or that I will do anything to avoid damage that will cause more disability.  Look, bad credit scores can be repaired.     Overdrawn checking accounts aren’t sexy, but let’s face it it’s a win-win for banks, and me. I’m picking up the tab anyway.    My bank gets to profit  from my overdraft fees, and I don’t have to choose between replacing my contact lenses or taking my son to the dentist.

Life with a  negative balance is a choice disabled Americans like me, make.  I only lost my car, but every day I read about people who are unable to get care they need because they only collect Social Security Insurance.  They don’t have a consistent flow of funds every month to cover a negative balance to get their foot in the door at a hospital or doctor’s office to prevent illness or injury.  Every day, people “walk it off”, and wait for treatment or evaluation because they cannot afford it on their $1076.00 they get every month from Social Security Disability. They do things like buy their children food and pay for things like the dentist and glasses. How is it that people who barely receive enough money to pay for rent and utilities, are expected to pay co-pays for procedures and tests they need to prevent further injury, disability or death?    Why is it perfectly acceptable to ask Americans unable to work because of their disability to live just at the poverty level?  Because we have accepted it’s okay to do things like cut our medication in half so our insurance companies can save money. Or that it is normal to wait for medical procedures or tests, then pay for  20% of the cost after an insurance company decides they’re going to pay a portion of it.  We pay monthly premiums to insurance companies so insurance companies can pay pharmaceutical companies for the cheapest treatment available.  Not the best.  First we must try the cheapest medication and risk failure, damage and death.  For Pete’s sake who is going to pay for all of this?

I am not innocent in all of this.  I had not appointed someone with power of attorney, to act on my behalf.  There is no excuse for that.  But to be honest, I don’t trust anyone enough to act on my behalf.  I fear judgement.  I fear they will tell me that I should consider living with someone else, and that if I don;t comply will remove my power to have any say in how I love my life.  People have done things to help me, and what I find myself doing after they leave is rearranging my apartment to suite my needs.  It has been my experience that when people help me, they do things they think would work best if they were in my shoes.  But they are not in my shoes.  And just because something is hard to do, it does not mean I should not do it.  The hardest thing for me to do is give up.  Sure, it might ease the mind of my family if I would just live in an assisted living facility, or had a home health care assistant.  Here is why I can;t do that.  It means the difference between having someone in a nurse’s uniform show up twice a week for three hours a visit.  I tried it when I got out of the hospital.  I have places to go and things to do.  I found myself canceling these visits because I did not have six hours a week to have someone come over, do a half-assed job of cleaning and stand around for the other two hours because the contractor required a minimum of six hours a week to make it worth it to have someone drive out.  I just needed someone to show up, clean my house and go home.

So you see, I can ask for help, but it will only be covered by the Veteran’s Administration, but only if I act like a proper sick person.  We have a sick-care system. And anyone trying to live a full life with their chronic illness gets to live in fear they will loose their benefit if they try to live independently.  Luckily I can get away with it because Veteran’s Disability Benefits cannot be taken away.  But what about those who cant?

For more about my experience with Social Security, Paying People to Stay Home