Prologue
Like most of my posts, I start with a topic, then go  ‘off-road’ with a personal related story and get back on track.   I have tried to change that, but this is after all, my blog.  Enjoy the crazy!

I hate the documentary called Project Scleroderma: Beneath The Surfce
For the longest time, when I  heard the name, my heart would swell with feelings of resentment. I justified these feelings by telling myself this documentary about scleroderma, only showed worst-case scenarios.  That people live well with scleroderma if they just stay on top of symptoms. My justification is one big fat lie I tell myself to avoid the reality of what is happening to my body.

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

Since my diagnosis in 1994, I have said a resounding, “NO”, to scleroderma.  My body, my mind and my heart scream “NOT ME”.  I am not going to be that club-handed and disfigured patient lying in pain that is the face of scleroderma.  I am certainly not scleroderma.  The truth is, that is exactly scleroderma and that is something I fight to avoid facing.  After more than twenty years of treatment for depression, I have learned there is nothing that will make me face the inevitable hardening of my lungs and eventual death.  Hold on, there is one thing that will pull me out of this depression and off of these meds: if it stopped and the damage is reversed.  (Hey, a girl can dream.)

I used to lock myself in my bathroom and scream silently, wishing the scleroderma would just stop.  Have you ever have those nightmares where you scream and there’s no sound?  Yeah, that.  Only it’s real.  And when the scleroderma stops in reality,  I’ll be dead.

Is it so terrible I live in denial that something is grotesquely disfiguring my body as it slowly kills me?  No, it’s not terrible at all.  (Lala Lala Lala I can’t hear you!) Because that is how I get up every morning.  I am always surprised when I see my hands every day.  I have to ignore my hands to get out of bed.  I can’t accept that God has a plan.  Because if God does have a plan, I have nothing kind to say about God..  I joke about making margaritas on the Handbasket to Hell, Because if there is a God, and if we meet, I would try to kill him/her.  So I prefer to believe there is no god.  It makes the most sense.  And if you’d like to tell me that when I am faced with death that I’ll start praying, I will tell you that is bulls&*!.  I have nearly died three times that I know of, and been clinically dead once.  There is no bright light.  And dying is actually quite relaxing when it’s not painful.  I speak from experience.  You know what terrifies me more than death?  Looking sick and in pain.  Not the kind of constant chronic pain people with chronic illnesses are forced to suffer because a bunch of non-ill people abuse pain medication.  I dread the pain of my body rotting and the feeling of the nerve endings dying.  If you have never felt a piece of your own body as it turns black and dies, I don’t recommend it.  I was in the hospital with a rotting thumb and nurses refused to contact my doctor as I begged for pain medication.  It wasn’t invisible.  They could see the necrotic tissue of my thumb die before their eyes. But according to them, I was just being hysterical.  They had never heard of such a thing.  And I also heard them say that I probably did it to myself to get pain medication.   And here are some more of the hits:  “Her thumb isn’t rotting off.”  and my favorite, “It’s all in her head.” That sore turned gangrenous, then tissue around it started to die.  An arteriogram had been done before I went into the hospital and it showed that the arteries to my thumb were completely choked off.   My thumb was getting blood back-flowing from the vein.  (Who are they going to believe?  Their own eyes? Not a chance.)

Oh, and if you are reading this and you are a nurse, I can hear you when you think I can’t. I love nurses, but I have met some real winners.

The funny part of that story, is that was in 1996 at a Veteran’s Hospital.  After loosing part of my thumb, my care was transferred to the Madison Veteran’s hospital, where they stepped up and began treating my illness.  But of course, the problem of nurses acting above their pay grade still happened recently In 2013, I heard similar statements at the nurse’s station at the Long Beach Veteran’s Hospital in the long term care unit.  The only difference is, we can add,”One day she’s going to wake up and not be able to move.”

Because I guess I was not having a reaction from 30 days of morphine, as evidenced  by my chart from prior hospital stays when I had a rash, the medication Benedryll was given to me in a higher dose, and the rash was quickly resolved.  The “wake up and not move”, were one of many comments of nurses who insisted on their own expertise based on their time working in a glorified nursing home.   They were mostly overworked BSN’s who did the jobs of CNA’s.  I actually had to teach them how to change the needle on my port-o-cath.   When I refused an IV into may arm and after one nurse finally figured out a patient should not be teaching nurse how to do their job, they got someone in to show them.  This manager was pretty upset when he found out what was going on.  Also, many nurses shared their beliefin the power of prayer.  In the beginning, I thanked them for their well wishes, and politely remind them occasionally that I don’t believe in God.  One nurse even told me I wasn’t taking good care of myself because I did not believe in God.  I do love nurses, but I love freedom from religion more.  I have made more than one nurse cry after they have put my life in jeopardy,  then I think of nurses who refuse to listen,  I have dealt with through the years and my guilt just disappears.  I don’t make nurses (and some doctors) cry for my entertainment.  It’s usually after they have made a careless mistake, or base my care on their experience with nothing related to the symptoms I have.  That and I hate them telling me that God loves me and has a plan, especially after I tell them I am an atheist.  It’s so disrespectful.  I don’t try to talk them out of their faith.  Why do they insist on talking me out of my lack of faith?  I guess that’s a whole other post.

Wow.  That was a rant.  I have left it in so you can get a glimmer of the judgement and doubt by practitioners, family and friends, scleroderma patients get:  This post talks about my time after scleroderma was diagnosed.  I can’t imagine what it would be like to go years with mysterious symptoms and being told it’s all in my head.  Oh wait, I did.  Again, whole other post.

I avoid things that point out the reality of scleroderma.  It’s what keeps me from drinking my  bottle the liquid morphine I keep.  Not to kill myself, but for pain.  I want to numb myself from feeling everything that has been damaged to my body.  Luckily, I love my family and friends and even more, I love myself too much to check out or keep myself over-medicated. (A little narcissism every now and then can be healthy.)

I greatly admire those who lead and participate in support groups.  I cope by paying attention to my symptoms as they come, getting treatment and finding things to do that have nothing to do with scleroderma.  I don’t participate in support groups.  I will assist in raising funds for patient support, I just choose not to get my support from other patients.  It’s not because they are fellow patients.  It’s because I do not want scleroderma to be the reason we hang out, and our only topic of conversation.    You may think that is selfish.  Maybe it is.  But it’s what works for me.  I share stuff in my blog.  That’s how I am able to help others.   It’s what works for me.

Project Scleroderma is a wonderful project that is going to help present and future scleroderma patients.   It’s well made, full of the horrifying reality of what scleroderma does to the human body.  And that’s why I can’t watch it, yet.

In 1999, I nearly died of depression.  I didn’t realize it, but I had stopped eating.  It was triggered by a failed study of treatment.  I was forced to see that scleroderma was going to be a long, slow and painful death.  It took years of therapy, medication and had a large role in what lead to my divorce.  And here I am, still alive.

Yesterday, I hung out with my son and played Smash Brothers on our Wii U.  The day before that, we went to Disneyland because we have annual passes.  And the day before that, on Valentines Day; my son and I went on a strenuous and beautiful hike in Griffith Park.  I have an amazing life that I would not trade for anything.  In September, my brother is getting married to an amazing woman I love dearly.  And I can’t wait to see my sister, brother in-law and nephew who will be here for the big party.   There is nothing that will motivate me more to keep fighting, than the life I have ahead of me.  And it won’t be easy.  I might get my heat broken a few times.  I’m going to have to keep going to auditions after being rejected.  After bombing during a set I wll convince myself to listen to the recording of me dying on stage to improve my set.  I’m going to have to do the dishes instead of throwing them into the trash.  I can drive seventy-five miles one way to pick up my son.  The stuff that people worry about- the medical stuff; to me that’s just like brushing my teeth.  A trip to the emergency department is just like a trip to the dentist.  Having to correct a pharmacist and tell him or her I will not cut my dose of Viagra to save the Veteran’s Administration and in prior cases, insurance companies, money, well that’s just fun.  It’s one of those silly, petty things that allows me to feel like I’m in control of something.  And of course, I horrify my family sometimes when I use humor to cope with what scares me.

Many of those involved with Project Scleroderma:  Beneath The Surface, have witness first hand as their loved one died while they could do nothing.  There is nothing anyone can do to stop death, once the symptoms of scleroderma become fatal.  Nothing except treat symptoms as they appear and slow progression with immunosuppressants. But times, they are a changin’.   (Immunize your damn kids, by the way. Please and we on immunosuppresants thank you.)

Twenty years ago, people diagnosed with scleroderma were told to get their affairs in order and prepare for the worst.  Thanks to research that has brought about treatment by non-profit organization.  This of course is not a cure, but we’re getting there.  Scleroderma is different in every patient.  There are amazing treatments available to patients whose doctors know about them.  (See the problem there?  We need to get the word out.)  We need to get doctors educated about scleroerma so they can offer their patients the bet possible outcome, while they wait for a cure.
Honestly, I don’t believe there will even be a cure in my lifetime.
I dare you to prove me wrong.
(Seriously.  I’m tired of being right most of the time.) 

Epilogue
Someday, I will watch the entire Project Scleroderma, documentary. Right now, I am busy coping with the progression and damage scleroderma has done to my body by simply getting out and doing what I want .  I usually don’t like to ask others to do what I wouldn’t, but I’ve lived with this for over twenty years.  I think I’ve earned a pass.  The Scleroderma Project, is a reality I don’t wish to face.  I will be forced to face it soon enough when my lungs stop working.  For now, I’m going to proof this, maybe do a Brazil Butt-Lift work out.  (Just because my hands are messed up, that doesn’t mean I can’t have a fine ass.) Then go on a long hike while listening to Foo Fighters.  So while I’m busy living, please watch and recommend Project Scleroderma.  Share what you learn, what you have done or what you would like to do, for patients with scleroderma.

You can find Project Scleroderma on Facebook,    Twitter  Website

To learn more about scleroderma:

NIHS: Facts about scleroderma.

Scleroderma Research Foundation, a partner of The Scleroderma Project

Scleroderma Foundation

Federation of European Scleroderma Associations Facebook  Website

Scleroderma Care Foundation of Trinidad and Tobago

If I forgot anyone, please send me a message on Facebook – Karen

And now, a shameless plug:
I’ll be at The World Famous Comedy Store  February 25th.  Because laughing has only made me stronger.  And, I could really use some butts in the seats.  Click here and get your tickets at the door.  $10.00 two drink minimum.  This is up a flight of stairs.  Visit my comedian FB page, hit “like” for information about upcoming shows.

        

Please Vaccinate Your Children

By Karen | Filed in Uncategorized

People tell me all the time that they pray for me and worry about me because I have two autoimmune diseases. They often ask what they can do. I used to say, “nothing”. I’d like to amend that.

You can help me: Immunize your kids.

Many people, not just in the United States have a compromised immune system.  A person with a compromised immune system cannot fight infections and the person is more likely to develop an infection.  Often the infection will progress faster than someone with a normal immune system.  A person can have a compromised immune system from an illness such as AIDS or because of medication used to treat some diseases.

What is an immunosuppressant?  A drug that suppresses the immune system.

Who takes immunosuppresant drugs?
1.  Organ recipients:  When someone receives an organ from a donor, the immune system is suppressed so that the organ recipient’s immune system does not attack this new organ.
2.  People with autoimmune diseases like Lupus and Rheumatoid Arthritis. An autoimmune disease or autoimmune response is identified when the body does not recognize it’s own healthy cells and attacks them.  Immunosuppresant drugs slow and sometimes even stop progression.  This is no cure.  many patients take immunosuppreants drugs their entire life.  One example of such a therapy is lower dose of a chemotherapy drug like methotrexate.

But wait, there’s more.
Another group vaccines protect are cancer patients.  There are so many types of cancer, and the short version is that a person going through chemotherapy is more susceptible to infections.

Here is how I am affected:
I take immunosuppressant drugs to delay progression of two autoimmune diseases. Immunosuppressant drugs keep my body from destroying its own healthy cells. As long as I get rest when I feel a cold coming on or get antibiotics right away for a bacterial infection, I’m able to fight and recover well and stay very healthy.

Immunosuppressant drugs have delayed the progression of pulmonary fibrosis and the swelling of my lymph nodes in my chest, so my heart does not have to work harder to keep me alive. Because of these medications, I have avoided a lung transplant and/or death.

Why vaccinating your kids helps me and many other people.  
I am very healthy, and fight infections well, thanks to the immunization of others. If you don’t vaccinate your kids and take them to public places, or a family gathering, you put my life in danger.  There is a great deal of misinformation about immunizations and people who are very immunosuppressed undergoing chemo for cancer. Let’s not forget about children to young to be immunized that are not just at risk, but in danger around people who are not properly immunized.

There is no research that connects autism to vaccinations.  Often, children begin to exhibit the symptoms of autism the same age they receive vaccinations.  When two variables exist at the same time, this is called a correlation.   Correlation is not a cause.  These two things simply occur at the same time and may or may not be related.  The only way to determine if variables that exist at the same time are in fact related in some way is scientific study.  Not just one, but many.  I mention this because in an interview, Jenny McCarthy talks about how there  is a correlation between autism and vaccines.  That part of her statement is correct because both the symptoms of autism and the vaccinations happen at the same time.  But then she goes on to say that because there’s a correlation between autism and vaccinations, that means vaccinations cause autism.

Jenny McCarthy has claimed to have “earned” her “degree” from Google University.  I don’t think Jenny McCarthy is solely responsible for the ocean of misinformation about vaccinations.  Let’s not forget the only study that concluded autism is caused by vaccines, then the doctor who did the study, admitted his conclusion was false.  The reason he admitted his study was a fraud is that he was caught.  This is one of the reasons why the ability to replicate any study is so important.  And now, there is a day care center in Chicago where five infants diagnosed with measles because some people took their immunized kids to a public place like Disneyland.  So I’m going to say it again:  Vaccinate your kids.

        

Douchebag: (Doo-sh-bag) n.  One who works to outlaw safe medical procedures for women while insisting vaccines should be optional.
Use in a sentence:  Sean Hannity  should visit countries where vaccinations are rare and see what the measles do without treatment or prevention.  Sean Hannity is a Douchebag.

The term Pro-Life, is a like a dog whistle, but instead of sound, the Pro-Life Whistle uses identity.  Those who identify themselves as Pro-Life, hear the words, ‘Pro-Life” and start arguing against any idea that suggests women who have abortions are not cold-hearted baby killers.  We who have have had abortions are not cold-hearted baby killers.  We don’t wake up and decide to go have an abortion to earn points  on a punch card to receive a free one on the eleventh visit.  Abortion is a medical procedure.  And for many women, it is the dreaded choice after exhausting every option to have a healthy baby, or save our own lives so we do not orphan the babies we already have.  Also there’s a choice we make to have an abortion because it is what is best for the person making the choice.

As someone who has terminated a pregnancy, I speak from experience.  It is absolutely none of your business why I had an abortion.  I’m really only admitting it because we are still fighting to keep it legal for 40+ years.  That, and I don’t give a rat’s ass what you think of me because I decided to do so.  I will give you a hint:  My birth control failed, there was no Plan B option at the time, I was in my 20’s and it had nothing to do with saving my life.  I have heard people say things like, “Women use abortion instead of birth control.”  In my 44 years, I have met only one woman who  does not use contraception of any kind and has no qualms about terminating a pregnancy if one happens through carelessness.  This does not make me an expert on abortions, but that does tell me how few people I have experienced on my path, who have done that, and that is her right.  I don’t have to agree or disagree with anyone when it comes to their own body.  The people who will pay the cost of restricting rights to safe and legal rare procedures, are all women.

If you don’t believe in abortion for any reason, then don’t have one.  Please stop spouting misinformation and harassing women who are forced into situations you cannot possible imagine.  Please get out of our ovaries and do something that will actually help children; like funding free lunch programs, free day care or preschool programs, and domestic violence treatment and prevention.  Don’t hide behind some passage in The Bible and dare to call yourself a Christian, then  mandate pain and suffering onto fellow humans.  Yes, I have terminated a pregnancy, long before I even had scleroderma.  If I were to get pregnant today, I would terminate the pregnancy because I will most likely die,  and honestly, even if new information came about that revealed I would be fine, I’d still terminate the pregnancy.  I don’t have to justify it.  I can’t rely on oral birth control due to high blood pressure likelihood, and risk of stroke.   I cannot risk an invasive sterilization procedure because my body destroys its own cells.   I must rely on a thin piece of rubber and if that breaks, I have Plan B to keep a potentially fertilized egg from implanting itself into the lining of my uterus.    It’s my body.  How dare you judge me for decisions I  make regarding my own well being. If you get pregnant, do what you feel is right.  Stop trying to regulate my ovaries and uterus and proclaim vaccination should be a choice.  T here are diseases that are killing people who are suffering and in great pain.  Doing something to help those in need of a cure, and need assistance while waiting.   Stop obsessing over zygotes and fetuses.  Take care of those who are out of the womb.  Stop calling sick people lazy and vilifying the poor.  Stop watching Fox News, and pick up a book.   Don’t regulate my ovaries and proclaim vaccinations should be a choice.

        

I Was Frog-Marched to My Mammogram

By Karen | Filed in Uncategorized

Frog-Marched 
Commonly used in the Washington D.C. area. Synonomus with “perp-walk”. Used to discibe being escorted to/from court, forcibly by the police.

“Dude, they are so gonna’ frog march Ken Ley.”  (Urban Dictionary.com) 

 

If I have a cough more than a few days and it does not get better, I have to visit my primary care doctor and have my lungs checked.  Because my lungs are damaged from scarring or pulmonary fibrosis and my history of sarcoidosis, scleroderma and MRSA; I never hesitate when my lungs need a listen.

 

Visiting my general practitioner at any VA hospital these past 20 years has always had a long wait, but not as much lately. My GP is part of the Women’s Clinic. I’m not sure if it is more efficient because women’s clinics are new in the VA healthcare system, but finally, it’s good to be a woman in the VA healthcare system. Well, most of the time it’s good. Let’s keep some perspective. I’m still called Mr. Vasquez one out of every three times I visit the VA, but never in The Women’s Clinic.

 

My GP was out on maternity leave. The doctor I saw in her place was great. She actually read my chart before seeing me. If you have scleroderma or any other chronic illness. you know just how rare this is. She also read that I still needed a diagnostic mammogram and ultrasound. So after she listened to my lungs to rule out pneumonia, she informed me that I was not leaving today without a visit to the imaging department downstairs.

 

So I said, “I will go there as soon as we are finished.”

 

And she replied, “No, the nurse case manager will take you down to mammography”

A few months ago, I had a mammogram. The results of my mammogram came back inconclusive, and required a second mammogram and a diagnostic ultrasound. It’s not the first time I have had a mammogram require follow-up testing. Everything came back normal the first time this has happened. I was a little spooked, but I wasn’t worried.

 

After learning my most recent mammogram needed further tests via a phone call from my doctor,  I went to the imaging department at the West LA VA Medical Center the very next day.  Veterans don’t need an appointment to get mammograms because early diagnosis can mean the difference between life and death. A no brainer, right? Right. So I stopped using my brain.

 

You see, the day I went back, it was a busy Monday. I saw that eight people were waiting, and decided to come back another day. I returned the following Friday; the one day a week mammograms are not done. No big deal, I’ll come back on Tuesday. Tuesday came and went. I planned to go for my testing after my rheumatology appointment the following Thursday. The following Thursday came, and after my rheumatology appointment I hit the lab. I was surrounded by people coughing for over an hour before my name was called for a blood draw and urine sample. I was tired of being surrounded by sick people. So, (when called) I peed into a cup, gave up 5 tubes of blood and got back in my car with every intention of returning the following Tuesday. Of course, that didn’t happen

 

The next week, I was determined to get to the imaging department for the tests I needed, but I came down with a cold and decided to stay home and rest. The only thing I hate more than having diagnostic tests, is being sick while having them.

 

I do my bloodwork. I follow up on my medication. When I have an infection or complication, I am on the ball. But something like fasting blood work and mammograms or milestone check-ups, I am a flake A big flake, and if you are thinking that I am an a**hole for not getting my scheduled mammograms and following up on the results, you are absolutely correct. I am an a**hole for avoiding free diagnostic check ups that can stop a treatable disease like breast cancer.

 

I could write paragraphs with reasons for avoiding time on diagnostic tests and not one reason would be valid to any sane adult. And the doctor who listened to my chest that day, knew it. There was no talking my way out of this one. I was going to the basement to put my tits in a plexiglass vice, and that was that. I was sent back to the waiting room to wait for the nurse case manager. I don’t think my medical records were a topic of discussion, but everyone in that department knew why I was seated in the waiting room, again. And you know what, they didn’t have to do what they did. They could have let me go on my way and most likely skip my test and let the chips fall where they may, but they didn’t.

 

So when the nurse case manager came to get me in the waiting room, I got up and went. The word frog-marched came to mind. Not that I wouldn’t have gone, but I hope that will be the last time I need to be escorted by a case manager, who will make sure I stay for the tests I need. Flaking on my follow-up mammogram and ultrasound was selfish, careless and an overall dick move.

 

I had a mammogram before, but this one took longer. Next, it was determined I needed an ultrasound. I went straight from the mammography room to another room for the ultrasound. It wasn’t anything special. They do this for everyone who needs a follow-up mammogram. Before I finished putting on my clothes after the ultrasound, I was given my test results in writing, signed by a physician I did not see the whole time I was there. Was she kept in a cabinet somewhere big enough for her and a monitor. What was this witchcraft?!! We may never know.

 

I am thankful to the staff and providers at the West LA Women’s Clinic, who took the time to show one patient how important it is to take time for more tests, no matter how burned out she feels.

 

        

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

        

Words are just words, and only have power by the actions of the speaker.

I grew up in a very Catholic home.  In fact, I knew nothing about the existence of any other religion outside of  The Holy Trinity, until high school.  When I was a kid, I remember that when it was time to make  turkey stuffing with my grandmother, it  was the time of the year she began to sing a song called, “Happy Holidays”.  And throughout the holiday season I remember my grandmother dancing from one room to another singing, “Happy Holidays”.  It always made me feel good and cheerful.  When I hear that song now,  it still makes me smile and reminds me of her holiday spirit.  I thought nothing of the term, Happy Holidays.   I thought it was a nice way to cover all the holidays my family celebrated; Thanksgiving, Feast of the Immaculate Conception, Christmas and New Year’s Eve and New Year’s Day.  Happy Holidays was just a condensed wish to another person.   I never needed to be reminded that my family’s reason for the season was the birth of Jesus.  It was just understood, because it was covered in CCD and eventually, Catholic school.  Now, Happy Holidays is being vilified because the birth of Jesus is not specified.  Using the logic everyone must be wished Merry Christmas or civilization will collapse, then what about our New Year?  Is that all I get, a Merry Christmas?  You didn’t say anything about the  New Year, so you must not believe there is a New Year.  How can you deny the existence of a New Year?  Blasphemer!

             When did the United States of America become so literal that we have to ‘fight’ a war to protect The Baby Jesus’ birthday?  When I was a child in the 1970s and 80s, my mom played the Barbara Streisand and Neil Diamond Christmas albums, and they are Jewish.  They don’t celebrate Christmas, yet they took their beautiful, unique voices and gave us our Christmas favorites. See, it’s okay for Jewish people to sing Christmas Carols, but those who say, ‘Happy Holidays’, are the real villains.  Think about that for a moment, and then read this quote from an article in Jewish Weekly:

“There is nothing wrong with wishing a non Jewish neighbor “Merry Christmas,” just as it would not be a betrayal for her to wish you “Shabbat Shalom” when leaving work on Friday afternoon.”  

Pure evil, right?  (For those of you who do not understand sarcasm, please look it up.  We’ll wait.)  It has to be the best, ‘Love thy neighbor’ example I have found so far, and guess what?  It was not made by a follower of Jesus.

The Christmas Myth
It’s a myth that Happy Holidays is a politically correct statement.  It has been called that because somehow the meaning was changed from a nice way to wish someone Happy Chanukah, Merry Christmas, Happy New Year, or whatever you celebrate- may it be happy;  to:  “There is no God.”     Happy Holidays is simply a PLURAL statement and well wish, that’s it.  Those of us who use the plural statement do not wish to challenge or belittle anyone’s faith.  And yes, I know there are people who wish to offend people of faith.  They do it because they believe it is their job to get you to think like they do, but they are not a true threat.  I have never seen an atheist convince a person of faith to walk away from their faith.  (Well, except  Mat Damon’s character in the movie Dogma, but  that’s just good comedy.)

I Want You
This War on Christmas is not a war on the birth of Jesus.  I think he War on Christmas is a veiled attempt to evangelize.   When someone insists on being only wished a Merry Christmas, it’s another way of saying, “My faith is the only true faith.”   Didn’t the pilgrims who felt persecuted hop on The Mayflower so they would have the freedom to burn witches, their way?  Okay, at least have the freedom to practice their religion.

The War on Christmas existed long before Bill O’Reilly, but he is one of the most famous “warriors”.   Yes, the guy who kills every person he writes about in the title’s of his books, announced that the term, “Happy Holidays”, was a declaration of war to people of faith:  Specifically, Christians.  Bill O’Reilly, an armchair general who talks about “war” like it’s a pee-wee basketball game.  Yes, a war is is when hostility exists between two parties, but resolving this conflict by way of war means that people are willing to kill and die to defend their group’s argument that caused the rise in hostility.   Funny thing about war, is that as we read in books and history by those who fight in wars,   often those who are fighting the wars forget what could’ve have been so important to bring about the death and destruction they have witnessed first hand. (One, two, three what are we fighting for?)

War of Ideas
Then there are those who believe the financial crash of 2008 was brought on by “Happy Holidays”.  As Daniel Henniger, a columnist for the WSJ put it, “One man’s theory: A nation whose people can’t say “Merry Christmas” is a nation capable of ruining its own economy.”

He goes on:  “It has been my view that the steady secularizing and insistent effort at dereligioning America has been dangerous. That danger flashed red in the fall into subprime personal behavior by borrowers and bankers, who after all are just people. Northerners and atheists who vilify Southern evangelicals are throwing out nurturers of useful virtue with the bathwater of obnoxious political opinions.”

So, it was the atheists who deregulated banks.

He ends it by cautioning us with this nugget: “The point for a healthy society of commerce and politics is not that religion saves, but that it keeps most of the players inside the chalk lines. We are erasing the chalk lines.

Feel free: Banish Merry Christmas. Get ready for Mad Max.”

You know, Daniel Henniger has a point there.  How could people like me who don’t believe in God, possibly know the difference between right and wrong?   Maybe I just don’t believe in fearing punishment in another life, if I do something unethical in this one.  Maybe I know how to be ethical through what was instilled into me (good or bad) when I was a kid.  Maybe, I just choose to be ethical because it’s my choice and I prefer not to make others miserable to further my financial and/or personal gains.

A reader once sent me a message asking how I could possibly enjoy something like a sunset, without believing in God.  Maybe I like the way the gases of the atmosphere mix with humidity and the light of the sun to create  majestic sunset, and I don’t have to give credit to a deity,  I just sit back and enjoy the view.  If we were created by a deity, wouldn’t that deity want us to sit back and enjoy his or her work?  Certainly someone who could create something so majestic would not be petty enough to require a thank you for everything.  How insecure is a deity who needs to be thanked for everything?  I’m pretty certain that if God did exist, he has a full enough life not to require thank you or praise for every single deed.  Kind of like how an atheist or anyone, can do a good deed simply for the happiness of others, and though a thank you is appreciated, the deed is never done simply for praise or reward.  Or maybe the reward is seeing someone happy. Who’s to say what’s in the mind of an evil atheist like myself?

Not wishing one another a Merry Christmas is not endangering The American Way.  Yet our holiday greetings are getting far more attention than the fact that 22 veterans are committing suicide every day, or that their are children starving in the U.S., or thanks to the actions revealed in the Torture Report we are no longer have the moral credibility we once did.  now have new applications of  hummus done in our name that is forever burned into the retinas of our minds.  No, we have a bigger problem:  People are not wishing ‘Merry Christmas’,  because there is a war on Christmas.

While we’re talking war on faiths, how about war on non-faith?  I have members of my family who post on Facebook how happy they are when someone is denied freedom from religion.  That a person should not be allowed to not participate in a religious ritual in their daily lives.  But a war on non-faith sounds just as ridiculous as a war on Christmas.   Now, Happy Holidays is being vilified because the birth of Jesus is not specified.  Using the logic everyone must be wished Merry Christmas or civilization will collapse, then what about our New Year?  Is that all I get, a Merry Christmas?  You didn’t say anything about the  New Year, so you must not believe there is a New Year.  How can you deny the existence of a New Year?  I

In fact, in my own personal beliefs and in the spirit of  Cafeteria Catholicism,  I’m an atheist, but sometimes I do wonder if there is a god, which makes me agnostic at times.  Does not mean I want to convert you to my non-faith?  Hell no  I don’t.  I enjoy my freedom from religion, just as someone else enjoys their  freedom to practice their religion.

And now that the holidays are just around the corner, I have already been notified that if I do not share a picture on Facebook that proclaims Christmas as the only winter holiday, I will suffer the consequences and be wished a Merry Christmas.   Because dammit, it’s what Jesus would have wanted.

If you wish someone Happy Holidays, and are offended when answered by Merry Christmas, you really don’t wish them a happy anything.   If you are going to wish someone a Merry Christmas, and become offended when it is answered by a Happy Holidays, you don’t really wish them a Merry Christmas.  In both cases,  actions do not support the well wishes.  That same example  can be applied in many other instances.  For example the statement, Support the Troops.  When an a declaration of war is proclaimed and you cheer, talk about war like it’s a sport while staying home playing Airsoft using terms like, “real world situations”, paint giant words on the side of your house that match the yellow ribbon car magnet that says, “Support The Troops” right below that giant flag mounted in the back of your pick up truck, those are just decorations if that’s all you do.  And donating to non-profits for vets is nice, but if we really supported our troops we would’ve made sure that when they got home, we had the ability to give the help they need.  Recently, an elected representative cut a bill for services to help suicidal veterans because it would be too costly.  It’s funny how he and millions of other Americans never thought going to war would be too costly.

Merry Christmas, Happy Holidays and Support the Troops only have power through our actions.  Don’t say any of them if you don’t intend to show the same sentiment with your actions.

PS:  I never intended to tie this post to Senator Coburn blocking the Clay Hunt Suicide Prevention Act for Veterans.  I started writing about words and how those words could be proven insincere by actions that do not match them.  Then I started thinking about 2002/03 and so many things I have heard this past decade regarding The Iraq War, Afghanistan War and how as a patient at VA hospitals I watched as no one talked about the true cost of war, while cheering on Shock and Awe.  I remembered when I first saw young Soldiers and Marines making their way through the halls of the Loma Linda VA with their newly amputated limbs.  I thought about the twenty year-olds I saw who appeared to be uninjured physically, and when I looked into their eyes I saw nothing but pain.  Then out and about with friends and family, on TV and radio, I heard people who had never put on a uniform or volunteered an hour in a Veteran’s hospital, talk about war like it was a hockey game.  There’s more to that, but it is the holidays…  Thank you for reading, -Karen

http://flavorwire.com/429830/10-great-christmas-songs-recorded-by-jewish-singers

Who Started The War on Christmas? by Max Blumenthal -The Daily Beast 12/09/2008

http://www.thedailybeast.com/articles/2008/12/09/who-started-the-war-on-christmas.html

Mad Max and the Meltdown:  How we went from Christmas to Crisis. by Daniel Henniger, Wall Street Journal 11/20/2008

http://www.wsj.com/news/articles/SB122714101083742715?mg=reno64-wsj&url=http%3A%2F%2Fonline.wsj.com%2Farticle%2FSB122714101083742715.html

Senator Coburn Blasted for Blocking Veteran Suicide Prevention Bill- IAVA 12/15/2014

http://iava.org/press-release/post-911-veterans-blast-senator-coburn-for-blocking-crucial-veteran-suicide-prevention-bill/

        

Protecting The Kingdom At All Costs

By Karen | Filed in Scleroderma

 

We all have fears.  Most people have a fear of things that will eat them.  Some may be afraid of heights.  I have a fear that walks a fine line between a little weird, and crazy.

 One of my biggest fears is having to disrobe for a medical exam between waxing,  mistaken for Sasquatch and forced into a life of captivity as a subject of scientific research.  But my greatest fear, is being without underwear.

For as long as I can remember, I have never worn anything without my underwear, even pajamas.  First, it was  my diaper under my feet-ey pajamas.  Next, K-Mart underwear, because we couldn’t afford Underoos. and finally, underwear and an over-sized T-shirt.   Look, I may not always wear pajamas, but when I do,  I always wear my underwear beneath them.  

This may sound like the beginning of a story where I talk about how I was traumatized, or have a repressed memory  manifesting itself as a compulsion  to protect my private parts, but no, this is not the case.  And before you go all Freudian on me, I can say with great certainty after 16 years of therapy, if I had been violated in some way, it would have come out, and luckily this is not the case.  Nope. I just have an unrealistic fear of going commando.

Is that really such a bad thing?  I think not.

When I was growing up, I saw actors on soap operas wearing sheets like a beach towel, and I wondered, “Why are they talking about how much they love swimming.  I love swimming too, but this is ridiculous. Maybe if you’d shut up about it, someone will bring a peanut butter and jelly sandwich to that fancy tree house of yours, just like like Mrs. Lancaster did. ”  (Hey, didn’t everyone have a friend with a pool?)

Eventually, I learned that people in soap operas were not having a post-poolside conversation in a fancy tree house, but had just finished playing another type of Marco Polo.  Now, years later before, during, and after I play ‘Marco Polo’ ,   I leave my underwear on until the very last second, and once they’re off, I know exactly where they are.  Or at least which direction to look.   Maybe that’s TMI, but we all saw Kim Kardashian’s naked, oil-basted, photo-shopped ass last week, so if anything, I’m being modest.  (You’re welcome!)  After sex, I may stick around to bask in the after glow, but only after I have put on my undies.  If  I can’t find my underwear, and I’m not at home where I can pull a new pair out of the dresser drawer, I will search the place with the passion of a cleaning meth addict. (Without all that itching) I will turn on lights, lift sheets and flip mattresses if that’s what it takes to find them.   Maybe to \ you, underwear just may be just a poly-cotton  blended piece of clothing, but to me, my britches are The Knight of my Lady Parts, and defend The Kingdom with honor.  (Yes, I did just refer to my vagina as, The Kingdom.)

In 1998,  I left for work one  day and  woke up to find my mom was there from Arizona, my dad was there from Northern California, my grandparents were there from Westminster and my ex-husband looked a few years older, and he lived with me so I had no idea why he looked  so tired.  I might have felt like Dorothy at the end of The Wizard of Oz if it weren’t for the stabbing headache from a skull fracture with  subdural hematoma and a few broken ribs.  I had been in a coma for three days, (I was time traveling.  Suck on that, Doctor Who!) and if my husband had not been home to perform CPR on me in a pool of my own blood, I’d most likely be dead.  I had heard of comas, but I thought they only happened to people in soap operas.  Once I realized I was in a hospital gown, I immediately took inventory on my underwear and found a catheter, and it freaked me out a little bit, but I had such a headache, I was unable to do anything about it, and for a few days, The Kingdom remained unguarded

It took me months to recover.  My mother-in-law came out from Wyoming.  She and  my mom were both there to help as long as they could, but eventually it was up to my ex-husband to change the dressing on my head.  It was very hard for me to reach my wound, because I had been in bed for so long recovering, my body atrophied a bit,  and there were broken ribs, and the scleroderma, didn’t help either.

Then came the day when my underwear saved The Kingdom from invaders.  After a head injury most patients need sleep, and I was no exception.  My head wound had almost completely healed closed.  It had about an eighth of an  inch left to be closed completely.  I had most of my mental faculties back, but I still tired easily and needed naps.  One afternoon, I was awakened by movement on my arms.   It felt like tiny little hairs barely touching my skin.    I got out of bed and headed to the bathroom mirror, took off my shirt and saw ants scrambling from their marching  formation across my body,  up my neck and into my hair.  I looked in my underwear, and there were no ants.  The Kingdom had been defended from foreign invaders.  I wondered why ants were headed for my hair, then I pulled the bandage aside, and in the white puss were ants,.  Zombie ants harvesting bits of my brain to bring back to their colony of ravenous, zombie-baby ants baring tiny, zombie-ant teeth anxiously awaiting my delicious brain tissue.  I had always thought that if I were to be eaten by a creature, I thought I would be delicious, but knowing I’m delicious did not calm me down.   There was no time to even scream,  because I jumped into the shower, got rid of all the ants I could from my body, got dressed, and got into my car , which in retrospect was not the wisest choice, and drove forty-five minutes from Oceanside to La Jolla, to my local Veteran’s hospital ER to get those ants  out of my head.

I wouldn’t recommend it, but I can say with great certainty  that if you walk in to any ER and start screaming, “Get these ants out of my head!”, you will get immediate attention.  In most cases,  that would result in  restraints and a psychiatric evaluation.  Lucky for me, the bandage on my head added credibility to my story.    I was examined, and I  found out my wound had become infected.  We had just cleaned and changed bandage that morning, and the doctor told me the ooze was only a few hours old, and the ants were harvesting the pus, not feasting on my brain.  I do worry that one day, zombie ants will come back for the rest of me.

My husband came straight from work at Camp Pendelton,  and brought with him a shipmate  to take my car home.    To say  he was upset with me because I drove myself to La Jolla, was an understatement, but by the time he got there he was either over it or had swallowed his feelings to get through one more medical complication during our first year of marriage. I remember that he was a cool cucumber when he got there.  After that, I don’t remember much.  My wound was scrubbed and debreeded of tissue and bandaged.  They tried to give me a bandage cap to wear over my head, and of course my dumb-ass refused, because we had a wedding to go to the following week and I didn’t want to look like a head-injury survivor, you know because I’m that kind of stupid.   So, they bandaged it with more tape and gauze, and sent us on our way.  I don’t remember much else, because after having my head scrubbed with what I believed to be steel wool, I got a nice shot of morphine for the ride home.

Sixteen years later, I continue to enjoy my full recovery.    But if I was already ‘enthusiastic’ about always wearing underwear, I became even more so because you know, ants.  (in case you forgot)  And so, the saga continues…  

Having scleroderma, means that invasive tests are routine to monitor  progression.   The following year, I was due for an upper endoscopy.  In the  pre-operating room, I was handed a gown and told to remove all of my clothing, even underwear.  I remember thinking, “Yeah, I’m just going to ignore the part about my underwear.”

They were working on my mouth.  Why would they possibly need me to be completely naked?  Maybe they take this who sterile environment thing too seriously.  I’ve had them before, but I couldn’t remember if I had left my underwear on during prior procedures, and my compulsion guided me to the right path: Keeping my  chonies where they need to be, protecting my private parts from ants.  And I got away with it.

Fast forward to Superbowl Sunday, February 1, 2004. A young and upcoming artist named Beyonce, sung our National Anthem.  Kid Rock was wearing a lovely American Flag poncho, desecrating the American Flag. And Janet Jackson had just scarred the corneas of children around the world because they saw her star-shaped nipple for 1/16 of a second, but I had bigger concerns.  I was eight month pregnant, and someone had the nerve to interrupt me while eating a chicken pot-pie.   I was in the hospital, with blood pressure so high, I was blind in one eye.  My had  doctor come in to my room and with exciting news:  We could not wait until the following morning, that baby had to come out now.  Blood work had determined the rate of my organ failure due to my very high blood pressure had become critical.

So I looked at him with my one good eye and said, “Okay, let’s do this.  But I did just eat a chicken pot pie, is there any way we can make it so it doesn’t come back up?”

Even on an empty stomach, I hurl coming out of anesthesia.

He replied, “Don’t worry, we have drugs for that.”

And that was the day I learned to ask for nausea medication before every procedure, and I never threw up after surgery again.  THE END.

My husband and mother had just left an hour before this lovely news, back home to Murrieta. The plan was for my  husband was going to come back to stay with me in the hospital overnight, and my mom would be back in time for the birthing in the morning.  We lived forty-five miles from the the hospital in San Diego.  So while my mom and husband sped back to the hospital, I was prepped for surgery.  I was given a gown and told to remove all my clothing and of course, I left my underwear on.  If there was ever a time I needed The Kingdom protected, this was it.  They were cutting the baby out of my abdomen anyway. ( In retrospect, wearing underwear while giving birth does sound a little odd, but at the time, it sounded pretty sane to me,)  I was transferred to a wheelchair and spent some time outside the OR watching nurses and doctors work quickly, but calmly.  Premature delivery was common at Mary Birch Hospital, and at thirty-two weeks, I was considered full term.   I was placed on a gurney and wheeled into the OR.

This was my first time in an operating room while being wide awake.  The bright lights of the operating room seemed to emit cold air against its deceptively bright white, foreboding walls .  I caught a glimpse of the table, just before it was covered.  The steel  made me think of a deep sink in the galley of my first ship.  The smooth surface  looked more like it was made for a giant cooking pot, not a human.  Just like the counter next to the deep sink, the sides of the operating table beveled a little.  On the ship it helped keep water from falling to the floor.  How clever.

I was placed on the operating table.  My vitals signs were taken, my IV was hung and I was ready for my epidural.  I sat up, the back of my gown was opened and I heard the doctor behind me ask, “Why are you wearing underwear?”

“Because it’s comfortable? ‘

A nurse walked up to me, held out her hand as if she were collecting my chewing gum like my fourth-grade teacher, and said, “You’re not getting that epidural if you don’t hand me that underwear.”

And like a kid spitting out her gum, I removed my underwear.  I got back into position and felt the cold of the antiseptic at the base of my spine, a small pinch and then nothing else.  My first epidural was a piece of cake, but I was forced to go commando.  I felt weird and exposed although I was covered in sheets.  A partition  was set up, it didn’t cover my face, but I felt like I was in a tent.  I closed my eyes and tried to pretend I was in a blanket fort at my grandmothers, which  helped until I felt those blue sheets they use in surgery, over my belly.  Then  I heard one of the nurses say, “Doctor, he’s here.”

My husband and mom were greeted at the hospital’s main entrance by a nurse who quickly let my husband to where he was to scrub in.  Now I understood why the operating room in this hospital was on the first floor, near the NICU.

As soon as my husband was in the room next to me, I could sense the scalpel slicing my belly.  At first, I marveled over just the possibility that a human being could open up another human being’s  abdomen, and pull out another human being.  Then I began to feel my insides being stretched and rearranged.  It wasn’t painful, but my head moved with every not-so-gentle push and pull.  My partition was blue, and I wondered if looked like a swimmer, treading water being  attacked by a great white shark beneath the still blue water.    

Just when I thought it would never end, a giant lizard with the most beautiful face I had ever seen, was held up by the delivery doctor.  The lizard looked at me and said, “I got this mom.  You get some rest.  I’ll take from here.”  as he appeared to point his index finger and wink at me.  

My husband left to be with him while I was busy having my body put back together, and fondly remembering the hallucination I just had.   I could feel my organs going back in and wondered if this was what a car feels like when its cam shaft is replaced.  The doctors rushed to put my insides back together, before my blood pressure went any higher.   I felt like I was inside out.  Even after being closed up,  I could still feel the cold air of the sterile ER inside my body. I was transferred to a gurney and was wheeled to the recovery room.   On our way, I got to see my little guy in his incubator as we crossed paths, and paused for a quick hello. 

Once I was stable enough, they let my mom and my aunt into the recovery room.  They stayed with me, as I lay there shivering from the inside out.  Mercifully, the shivering stopped and as soon as I had the strength, I lifted the sheet and examined my dressing.  My abdomen looked like it had been stuffed into a gauze corset, and I was wearing underwear.  Operating room underwear, but it was still underwear.  I sighed contently,.  My son was healthy and The  Kingdom  was once again, safe and protected. 

 

 

.

        

I’d Rather Have Chlamydia.

By Karen | Filed in Sarcoidosis, Scleroderma

 

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

 

        

All Aboard The Mommy Guilt Train!

By Karen | Filed in Scleroderma

 

Once upon a time, a mother refused to leave her hospital bed to visit her son in the NICU, and emotionally scarred him for life…  A fairy tale. 

A pregnant woman was laying still on her left side, because she was told to do it.  She was told to do so many things to to keep her blood pressure down in the past forty-eight hours.  So many things, she would not have flinched if a kitchen sink whizzed by her head.   The medical team, her mom and her husband were doing their best to stay calm, but she could read the fear in their eyes.  There was talk of    preeclampsia she was not meant to hear, spoken softly in that tone people use for the word, cancer.  Her unborn  baby’s heart monitor kept the rhythm, as nurses and doctors appeared to dance in and out of her room.

The expectant mother’s blood pressure was so high,  she was blind in her right eye.  She was a patient at   one of the best hospitals in The United States, possibly the world.    On the third night of her stay, blood work had shown that her organs,  were near the point of no return before she might fall into a coma and never wake up.     The only way to save the life of her and her son, was to end the pregnancy, which meant her baby would be born eight weeks early.

Her husband was met in the hospital’s lobby by a nurse, he was lead to to operating room where doctors were standing by with scalpel in hand, and began the C-section as soon as they held hands.  A baby boy was born,  as  healthy as an an eight week premature baby could be.   He needed help breathing and was taken to the NICU, and his mom was taken to the recovery room.   The following morning, after a rough night, the baby’s mom  was back in her room  Her husband and mother took turns checking on her, while they stayed with her son in the NICU.

Her husband stopped in her room before the doctor came in, and whispered to her “Don’t feel like you need to do anything.  Jake is fine.  Get well first.  Don’t let them guilt you into anything.”

This close call reminded him of how in the past six years, his wife had been legally dead, once, almost dead another time, and the night before; nearly died of organ failure.    Her husband was acutely aware of how rare pregnant women with scleroderma are, and even though her doctor might recommend activity, her doctor is basing that encouragement on  the hundreds of moms getting up to go visit their children in the NICU after delivery, who do not have an autoimmune disease.

Later, her doctor came in to check on her.  He told her she was doing better than expected, but her blood pressure was still dangerously high. The doctor then told her that a nurse would escort her down in a wheelchair to the NICU. The doctor wander her not to get out  of the wheelchair, because her blood pressure was still dangerously high.

She replied, “I’m going to stay here and rest.”

The room stopped moving.  All activity seemed to stop.   Maybe the in entire hospital because everyone, including the  window washer outside, stopped what they were doing, and turned to look at her.

“You really need to go to the NICU to bond with your son right away.  You need to do this for his sake.” Said her doctor.

She paused a moment, and second guessed her decision to wait before going to see her son.  She wondered if her son would truly be emotionally scarred  if she did not a  risk stroke,  organ failure and then death,  to go downstairs to sit in a wheelchair and hold her son.

She thought about it a moment and decided that if she could ask her son what he thought, he would advise her to rest to  avoid the risk of further danger.  She pictured her son, as she saw him immediately after delivery, held by two gloved hands and some arms and saw the most beautiful mucus-covered lizard, that ever was, wink at her and say, “Mom, shut up and lay down. Get some rest,  I’have got this.”

She opened her eyes to look at the picture her husband brought, and taped to  her bedside table of her clean son.   He no longer resembled a lizard.  He reminded her of  a loaf of bread that wasn’t  finished cooking, and it was her  favorite face in the world, and thought to herself, “That boy was with me every minute of every day, in my uterus nearly six months.  He is not going to be any less bonded to me, because I stayed up here and got more rest… Or will he?”

That was her very  first second guess as a mom. She wondered if her son really could be scarred for life. She had been a mother only nine hours,  and the doubting and guilt had begun.   She had boarded the Mommy Guilt Train. The longest, non-stop train ride there was, is, and ever will be.

 

SPOILER ALERT!
After  some rest, she went to the NICU. Does he look emotionally scarred to you?

        

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