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/

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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. 

 

 

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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

 

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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?

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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

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Okay, maybe not ever.  But how about the best description of living with a chronic illness that you will read for the next fifteen minutes?  

Are you healthy?  Have you ever wondered what it is like living with a chronic illness like scleroderma?  Watch the movie Ground Hog Day.

It’s no secret I believe Harold Ramis was brilliant, But I never really knew how brilliant, until I watched Ground Hog with my ten year old son.  Bill Murray’s character, Phil was having his worst day ever, over and over.  Things eventually got better for Phil, but not until he figured  out how to be happy, no matter what his circumstances.  (Yeah, I know it’s an old movie and you probably got this message back in the 1990′s, but this is still new to me.  So please humor me and read on.)

I can’t speak for everyone with a chronic illness, just me, and for me, it has been Ground Hog Day since 1994.  Every day, I wake up feeling okay, then I try to use my hands, or I get another weird diagnosis, or I am forced to train another doctor. Providing me plenty of food to nurture that garden of resentment and anger I tend  in my heart.

Let’s be honest, I’m a bitch.
Like Phil, I do not want to make friends with people who I do not wish to relate to, like other patients with scleroderma.  There, I said it.  I don’t want to get together with other patients who have scleroderma simply because we have scleroderma.  I would love to get together with other patients who have scleroderma and go to a movie, hiking or a root canal.  Anything but talking about living with scleroderma.    And yet here I am writing about how I hate talking about scleroderma while I’m talking about having scleroderma.  You see, it’s not really about the other people in my life.  I just don’t like being in this situation.

Like Phil, I had to stop and be present in my environment, find something I enjoy and then do it.  My problem was that I hated my environment so much, I wouldn’t stick around.  Have you noticed I have been moving every single year since 2009?  My family has, and I just got the memo.  I’m running from something.  But this year, I decided to stop running.  hen I watched Ground Hog Day for the 5oth time and related.  I still haven’t figured it all out yet.  But I have figured out I too could be that “nice young man from the motor club.”  I’m just not there yet.  And that’s cool too.  Or maybe I am there and I don’t know it.

I can fight situations all we want.  But then the time comes when I  need to stop driving angry, and today will be tomorrow.  Confused?  Me too.  So, why not  curl up on the couch and watch a classic Harold Ramis movie.  it makes everything better.  Have some popcorn, and don’t be stingy with the butter.

 

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I found a video by a kick-ass feminist.  I started commenting on her video, and started typing a post instead.   

I’m showing this video to my son, who is a ten year-old feminist.  He once looked at a place mat of the US Presidents. I knew my kid was smart, but I realized he was the most brilliant person I will  ever know.  He looked up and down both sides of his place mat. Then  looked me dead in the eye, and asked, “Mom, where is the girl president?’ That’s my boy!

My very first experience with term, Useless Female, was this:
It was  July, 1990. I was in boot camp.  I was out alone in the middle of the day, making my way back to my barracks from a doctor’s appointment.  Recruits, as we were called, always walked in groups, but sometimes recruits would be out alone for appointments.

A drill instructor of an all male company, stopped me, and  ordered me to come up and stand with him in front of this company.  He then pointed out how bad my clothing looked, he reached into my front breast pocket, pulled out my ID and shouted about how stupid I was because it was not lined up correctly. He pointed and spoke about me as though I were a mannequin,not a human being standing next to him.  I did understand why.  He was explaining to his company of recruits that there was no lower form of life than a useless female.    I only remember screaming and the word pussy a lot.  He  punctuated I think every  talking point with,  the question, “Do you want to be a useless female?” to his company.  I was 19.  I had been there maybe eleven days.  Boot cam hadn;t formally started for me yet, because we were being acclimated and in a temporary holding barracks.    I really did not know how to speak up for myself at the time.

I had been there less than two weeks, and that was just  the beginning of the humiliation and ass-grabbing  that was accepted as the norm.  I still don’t know how to wrap my head around that part of my military experience.  I do think it is important to share this story.  The story I have is not unique, we still have a long way to go to before we can even entertain the idea that the problem of sexual discrimination, harassment and worse in the military, is a thing of the past.

Many things have changed, but not the attitude that women are unequal.  It’s getting better, but I am still called Mr. Vasquez at the Veteran’s Hospital.  Actually, I have been a service connected veteran for 20 years now, because when I was 20, I did body work on boats, but I was not given the proper safety equipment until I could prove I could work as hard as a man.  I was temporarily from our ship to repair small boats.  I was one of two females.  We both worked over 14 hour days for weeks, wearing dust masks and  using masking tape on each other to pull fiberglass out of our skin at the end of each day.  We proved that we could work harder than the guys.  So we “won” our respirators.  Oh and the guys we beat, were sent back to our ship, while we stayed behind for the coveted spots we had one.  Of course, according to them, we had sex with the officer in charge to get the coveted spots.

Watch Why I’m A Feminist, by Laci Green. Find her on Facebook and keep an eye on her.  This lady is going places.

 

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It’s not my strength in spirit, or desire to help others that has kept me alive far longer than many expected.  I  am stubborn and  I refuse to accept my limitations because I have no patience for assistive  devices that move like molasses.  Yes, I do realize how childish that sounds after typing it, but I’m okay with it.  When I had to stay off of my foot for forty-five days, I used  scooter at Target.  I picked up everything in that stupid front basket and limped to the cash register, and I still moved faster than that scooter.

People tell me all the time how strong they think I am.  They go on about how I continue to live life bravely.  I’m not strong.  I’m not brave. I am deep in denial, and  I want to look good.  Does that make me a shallow person?  Look deep into my eyes.  Aren’t they gorgeous?    

Sure, it used to bother me that I can’t wear the four inch heals everyone else gets to wear, then I discovered shorts with Ugg Boots.  I know, it sounds weird.  And the shorts aren’t even that short. But it’s a great way to keep my body temperature under control, which is important if you have Raynaud’s.  And it doesn’t hurt that  Ugg Boots look good on me.  

The love I feel for my son and the thought of dying too young if scleroderma hardens my body sure is sad, but that’s not motivating enough to get me to exercise.  But do you know what is?  It is the remote possibility my son might have to see me ride a Rascal Scooter in Target, with an oxygen tank wearing velcro shoes.  Sure, I want to be around for my son, but I want to be around for my son and have an ass so perfect, one could bounce a quarter off of it.  Is that wrong?

 

 

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I am in no way qualified to give advice about methtrexate, (or anything, really)  but I’m going to share my cautionary tale.    It’s a bit of scenic route.  Thanks for riding along.

When I was first diagnosed with scleroderma, I had three questions:

1.  Sclero-What?

2.  Is scleroderma going to kill me?

3.  Can I drink with these meds?

The most important question I have ever asked about scleroderma, and eventually about sarcoidosis,  is  question number three.  No matter what the diagnosis, the answer to the first two still have easier answers than number three.  No one is really ever mentally prepared to be diagnosed with a debilitating, fatal disease no one can pronounce, so you’re going to cope some how. Why not do some drinking? ( smoking or eating.  I am so thankful someone was wise enough to put marijuana into baked goods. God Bless America.)

I’ve been taking methtrexate off and on since 1996.  This does not make me an expert.  It makes me someone who is lucky to be alive.    I am guilty of playing  ”home pharmacist” on more than one occasion.  It has been helpful to me at times like the Percocet Incident: when  doctor sent me home with copious amounts of opiates to take whenever I was in pain, which was all the time.  I could take eight Percocet during the day, come home from work,  have three margaritas and still be sitting upright,  carrying on conversations and playing Crash Bandicoot until 11:00 at night.   The information I needed to survive the progression of scleroderma was not yet available in the 1990′s.  In fact, the last twenty years have been a string of events, while I wait  for the research to catch up.  I’m not saying that anyone is lucky to be diagnosed with scleroderma, but I will say that it’s better than being diagnosed with scleroderma  in 1994,when doctors would answer my questions about medication and alcohol with statements like:  You should do whatever you want, you  don’t have much time anyway.  

Okay, so here is what I did  with my methotrexate.   Big emphasis on the did.  I now have doctors who answer my questions without the premise, “Well, you’re going to die soon.  Have some fun.”

When I feel an infection (wound or surface) I will skip a dosage. Skipping vs not skipping,  has meant the difference between quick healing of an infected wound.  And yes, I have discussed this with my rheumatologists.  Things like colds or viruses- I don’t skip unless my doctor tells me to.  Another issue is when I do need antibiotics for a wound infection,  certain antibiotics  blocked in a pharmacist’s computer system because I am on methotrexate.  One example is Bactrim.  

I had a wound infection that would not go away.  My doctor prescribed me Bactrim, but when I went to go pick it up, the pharmacist tried to replace my Bactrim with Keflex.  It’s no secret I hate Keflex.  Hours after taking it, I would get a weird taste in my mouth and just the smell of Keflex makes me gag.  Sure, itworked for me for a while, but it no longer works for me because the wound infections I get now are antibiotic resistant.  So, I politely  told the bright-eyed pharmacy assistant who was just trying to help me, to hang on to that Keflex.  I had to go back and get my doctor to override the block.  When  my doctor entered Bactrim into the system, it activated a  ”warning” built into the system to block contraindicated medications.  It blocked my Bactrim because methotrexate interferes with Bactrim’s effectiveness.  So, I went back to my rheumatologist, had her put a note in that the methitrexate had been discontinued, which it had for two weeks because when I have an infection that won’t heal, the worst thing I can take is an immunosuppressnt.  But you see, the computer had to be told that I had stopped methotrexate so it would allow the Bactrim.  And BEHOLD! Bactrim granted!  It took some communication to get the formulary corrected, but it can be done.  By the way, the look on the pharmacy technician was priceless.  A few weeks prior, we had a bit of a go round over Viagra, and I had that over ridden as well.  After getting them the information they need in order to follow my doctor’s prescription, feel an overwhelming level of satisfaction, like I should have a set of brass balls hanging from the drive shaft of my monster truck, which is super big because I am compensating for something else.

My point?  There is no way anyone can predict how our bodies will respond to medications, but we can work to prevent ourselves as individuals,  from being pigeon-holed into a treatment model that works for one group.  I have stood at many a  pharmacy window, and  glared at by pharmacy techs and pharmacists from atop their brick wall of formulary,  only to  return to their window as if I had just kicked  a twig off of my trail. Maybe it is all about how I perceive a problem.  The pharmacy saw themselves as a brick wall to save me from myself.  No one can save me from me, not even me.

One adventure with Methotrexate.

When I picked up my first prescription in 1996, to say I was frightened would be an insult to terrifying situations everywhere.  My three hour drive home was filled with thoughts of baldness, nausea and chemotherapy horror stories.  Luckily, I had no side effects from methotrexate.  My dose was titrated up to 25mg a week. My only side effect was fear.

Drinking and Methotrexate

I did experience three  Octoberfests on methotrexate,  and I survived with intact kidneys. If I could go back, I would advise me to be smart with my methotrexate.  Not  skip my blood work just because I didn’t feel like fasting.  (Done that.I never said I was a compliant patient all the time.) Drink lots of water, eat healthy and pay attention.  I would tell me, “Don’t drink Dumbass.    You don’t need to live like you are dying”.  (By the way, Live Like You’re Dying is a stupid song, and one of many valid reasons I still hate country music.)  

Methotrexate is  less a big deal than you think, but it is still  a big deal. It is a very strong drug and can kill you if you don’t pay attention.  Try not to panic.   Take the usual precautions you would regarding your health like avoiding alcohol, eating healthy and by practicing safe sex.   And by safe, I mean do nothing that requires the use a net and always establish a safety word, which  should never be “ouch”,  and you’ll be fine.  Notice I didn’t advise you to use a condom, because you already are smart enough to know that.  And if you need to be reminded to wear a condom, you do not have enough life experience to be reading my blog.  

Methotrexate is one of the most studied meds for immunosupression because  it has been around so long, and used so often.   My ex-husband credits the conception of our son because I took methotrexate the year before we conceived and after trying once before unsuccessfully.  

Of course, I was not on methotrexate when I did conceive- it just helped my body. In fact, methotrexate is exactly what you do not take if you are trying to have a baby.  But taking it to slow the progression of your hard to pronounce, incurable, autoimmune disease long enough to find yourself stable without it, before trying to have a baby was a good idea for me.  I was not going   to let some degenerative, fatal and hard to pronounce autoimmune disease stop me from having a baby who will one day grow into a mal-adjusted young adult in need of therapy because of his mother’s selfishness in her 40′s.  

You are smart and you probably pay attention to what you body tells you.  I always assume people who read my posts are more intelligent than I, and I have yet to be wrong.  You’ve got dreams.  Realize them.  Overcome the obstacles.     Move the twigs out of your way and get on with it.  People will think you’re moving brick walls, and it does wonders for the ego.   You’ve got this.

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The Ice Bucket Challenge

By Karen | Filed in Sarcoidosis, Scleroderma

The Ice Bucket Challenge is going to help the ALS Association get closeer to a world without ALS.   Before you add the ice, take a few minutes and read how dumping a bucket of icewater over your head will help patients with scleroderma and other diseases, as well.  Then, enjoy your dunking!

My body has changed a lot over the last 20 years. My hands are severely contracted. I have been offered surgery to straighten my fingers, permanently and bending the top knuckles in a “hook”. I was told my hands would be more useful. I have refused this procedure more times than I can count. I refuse it because I believe that this is a plateau. Of course, I will never regain full use of my hands before scleroderma, but I still call it a plateau.  Progress is progress.  

Not only have my hands been damaged,there is scarring in my lungs.  In 2008-2009, the scarring in my lungs accelerated.  We don’t know why, but for some reason, it stopped.  The bottom left lobe is scarred, and the short answer is my lung volume is 85%.  I had been diagnosed with sarcoidosis in 2007 and was put on the biological drug, Influximib, brand name, Remicade.  It may be related to many symptoms being controlled but there is no way of really knowing, without further study.  Like ALS and cancer, scleroderma is very complicated.  All diseases are different, but none is more serious than the other.  Like everything different, we can find things in common.  By doing so with diseases, we improve care.  In other words,  patients of all diseases benefit from breakthroughs in research of different diseases.

Cancer is nothing like scleroderma, but what we have learned from cancer research benefits patients of both scleroderma and ALS.  Progression of scleroderma is slowed down by drugs that suppress the immune system.   I sometimes wonder if I’m grasping for straws, but as someone who has spent many hours sitting next to cancer patients, receiving immunosuppression drugs (aka chemo infusions, but not cancer chemo), I’ve seen enough to know that as horrible as cancer is, I have benefited more than I will ever know from past cancer patients.  Oncology nurses , who specialize in cancer care, are amazing, and I have never had to train an oncology nurse on how to put in an IV.  I’ve had to train calm down a lot of nurses many nurses because of their lack of experience starting an IV in patients with thickened, hard skin.  Thanks to an IV nurse’s suggestion, I have a port-o-cath.  It had once been suggested to me by a rheumatologist, and I refused.   I felt that getting a port-o-cath meant I was near the end.  Getting that suggestion from an oncology nurse in a room full of chemo patients,  allowed me to ask about use not just from the nurse, but from patients sitting next to me.  Now, the port I have in my chest to allow the ease of IV medication, was not designed to help patients with scleroderma.  The inspiration for use doesn’t matter, because the principals are universal.    It was put there because doctors know that a port-o-cath would  make it easier to administer IV medication, reduce  stress, infection and keep my otherwise overused veins,  intact.  Of course, my rheumatologist happily ordered the procedure for me. It didn’t matter to them nurses made it easier for me to understand, they were just happy I was taking a positive step to make my life a little easier.  And, I was really relived when I saw that my cleavage is still spectacular with a port-o-cath.  

What about long term patient care and hospice.  These things are all needed by many patients with scleroderma, but scleroderma is so rare compared to cancer if there were no cancer treatment, there would be no scleroderma care and treatment.  We have also learned a lot from ALS, or Lou Gehrig’s Disease.  Do you see the connection?  Care and so much more.

Ice Bucket Challenge

So please, take The Ice Bucket Challenge, and help to create a world without ALS.  It helps us all.  But I would be crazy not to mention that I am raising funds for the Scleroderma Foundation.  My son and I will be walking this Saturday in San Diego, California.  So please donate to ALS Assciation, then please visit my donor page and donate a dollar or two.  I’m asking for such a small donation, because there are many diseases that need curing and a dollar or two leaves you the option to donate to another association.  No disease needs more donations than any other; all of these diseases need to be cured.  In addition to research, non-profit  associations, foundations and organizations also provide doctor, patient, caregiver support and education.  We may not be fighting the same battles, but we are all in this war together.  Thank you for reading.

 

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