There. I Said It. Archive

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?

 

I had been married nearly eleven years when I told my husband I wanted to separate a while.  We eventually divorced, with all the ugliness that comes with such an event.  Then, things started going well between us, but it didn’t happen overnight, but we definitely have a better relationship now, than when we were married.

My ex-husband and I were forced to not only stay in contact, but learn to work together for the sake of our son.  It wasn’t easy.  There was hair pulling, biting and temper tantrums; and my son wasn’t so happy about it either.  Then, one day, I did the unthinkable.  I told my ex that I thought it was best my son be with him full time.

It was not an easy decision, but it was the right decision.  My son’s father and I have joint custody, so the first few years, we split my son’s time during the week.  That meant half the week he was with  me, half the week he was with his father.  It was a rotation of four days on, three days off, and the next week was three days on and four days off.  Funny thing about that rotation, that was the watch schedule for my job as a Radioman, in the Navy.  Four days on, three days off, four nights on, three days off. then back to days to do it all again.  My body and mind never really adjusted to that schedule, and I was in my 20’s.  That same type of schedule was not working for my son either.   I had even moved into the same housing track as his father, step-mom and step-sister, but you know, my son needed consistency.  Sure, it was great to be so close.  And for us as his parents, it was nice to be able to be with him half of the time, but my son switching homes every four days reminded me of my childhood:  Not really feeling at home anywhere.

Growing up, we moved a lot.  I went to eleven different schools in twelve years; six elementary schools, two junior highs and three high schools.  I know the name of every school, except for kindergarten.  That was somewhere in Fullerton.  I felt at home at my grandparent’s house, because that was where we lived most.

When my parents first divorced, I saw my dad more.  We would go with him on Sundays  to Fountain Valley Fun Center and ride bumper boats, play video games and drive the track at Malibu Grand Prix.  It was great!   My parents worked things out between them, mostly.  It was far from perfect, but aren’t all parents winging it?  I love my parents, and I would get frustrated with their choices and sometimes I still do, but since my own divorce, I have become less judgmental.

My son’s rotation was not working for me either.  When I didn’t have my son, I stayed home because I was broke.  I spent my money on the three bedroom house I rented and things for and to do with my son.  I realized this was unhealthy, when a friend came to visit and I could not hear out of my right ear.  I hadn’t noticed it, because I was constantly alone when not with my son.  I went to see my doctor about my hearing, and I had so much wax build up, I could not hear out of my right ear.  That’s when I realized I needed to make a change, because I did nothing when I wasn’t with my son.  I watched TV.  I wrote in my blog.  On the surface it seemed like I had a life, but when people asked me what I liked to do, I had no answer.  Then one day I realized that my son and I would both do better, if he were with his dad full time.

It wasn’t because I thought I was a bad mom, but because I felt it was what was best for my son.  In addition to being broke, I had doctor’s appointments and hospitals stays.  The nearest medical facility that could handle my complicated diagnosis, was forty-seven miles away.  My commute could be anywhere between fifty minutes to three hours, one way depending on traffic.  I was constantly late to pick up my son, or to his school events because of traffic.

When I told my son’s dad I thought it would be best form my son that he were with him full time, I had expected a fight, but instead it opened up our communication and cooperation.  Look, it wasn’t perfect at first, but my son not only had a step-sister, he lived with his step-sister.  They had met at age five.  They are nine months apart and had already bonded as brother and sister when they were together, but once he lived with her full time, his behavior improved, and he seemed more relaxed.

Of course, I got the expected criticism from some family members.  One aunt even said to me, “Karen, how can you let another woman raise your son?  How is he going to know who his mother is?”

Of course, my son was sitting right next to me, playing Minecraft on his iPad.  Because family will always question your parenting, right in front of your child.  That’s their way of showing you they love you, right?   I looked at my son and said, “Jake, who’s your mommy?”

“You are.” He replied without skipping a beat.

Then my cousin spoke up, in my defense, and a few other people did as well.  I felt loved that day.  My great aunt asked me an honest question that was hurtful, and my cousins stepped up in my defense.  I was feelin’ the love that day.

Until recently, I felt I had to explain why I was not with my son full-time.  I felt I had to explain that my son was with his dad and step mom not because I had gone off the deep end, or have a meth addiction.  I was so insecure about it, I found myself standing on the sideline of my son’s flag football game, explaining to other parents why I’m not crazy.  Sounds crazy, right?  You betcha!

I would explain my need to be near a medical facility and I needed a hobby so why not stand-up comedy, but that happened only once at flag football.   On my way  back to LA after attending my son’s game, I looked over at the eleven year-old, tucked in under a down jacket I bought in the 1990’s, sound asleep.  He had a great game, a great day and a great week. I no longer felt guilty.  I felt relieved.

You see, even though I was in LA, his step-mom posted pictures on Facebook.  Every time I saw a picture of him, I saw a happy, confident kid.  I thought it was just me.  Of course, this wasn’t just me.  This past Friday,there was a pizza party after my son’s game.  I sat next to my son’s step mom, next to her was my son’s dad, who was also the team’s coach.  Across the table was who I thought was the assistant coach, and his wife.  It turned out, who I thought was the assistant coach, was someone my son’s dad asked to volunteer to help him coach, which is something I always liked about my son’s dad.  If he didn’t know how to do something, he would find someone who did and learn from them.  Who I thought was the assistant coach, was actually a professional trainer of football players grade 1-8.  Does his opinion really matter to me?  Not really, except for that night at the pizza party.

This trainer and my son’s dad were talking about the game the team had just won.  My son is the center.  For those of you who know nothing of football, that’s the player who hikes the ball to the quarterback.  The coaches have a playbook and some are referred to as plays for individuals who receive the ball.   I had only recently heard my son Jake was a receiver in one of these plays.    The trainer said to my son’s dad, “Be sure to use Jake’s play in the next game.  He’s getting confident and he’s ready.”

Now, that seems like a pretty generic statement.  But to a parent like me, who like all moms have a healthy amount of Mommy-Guilt, in addition to the guilt of not personally caring my son every day, I did a little happy-dance in my head.  (I hope.  I am pretty sure no one else saw me dancing in my seat.  One can never be too sure sometimes.)

I was excited to hear from a total stranger, that my son was becoming more confident, and ready to take on new challenge  That even though I left my son’s hometown to pursue what some may be viewing as a midlife crisis, my son was growing up healthy, happy, confident and a kid who knows he’s loved.  As a parent, that is the best possible outcome, no matter what the custody arrangements or income.

So, next time you see a family and the ex-wife and step-mom get along, and it seems nontraditional to you, please consciously replace the word nontraditional with happy.  Because no matter what the family dynamic, a happy family is one that works together to provide what’s best for their children.

 

Healthy, happy, confident, loved and knows he’s loved. Who can argue with reults like that?

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/