The Best Description of Living with A Chronic Illness You Will Ever Read. Ever.

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.

 

Laughter May Be Best Medicine for Scleroderma

Okay, maybe not the best, but it helps.

I started writing this blog in 2009.  If you have been along for the ride, you have seen my writing evolve from sub-par to adequate.  Now, I’m doing stand-up comedy and in no way should be promoting it, but I am telling people where I will be performing.  Why?  Because I talk about scleroderma.  I also posted this because I want to show other scleroderma patients there is hope, but you have to fight.  I did.  And now I have this warped sense of humor.  (I had the warped sense of humor before, but now I do it with more words of Latin and Greek origin.)

Clip from my performance at The World Famous Comedy Store, June 10, 2014

 

Look, I never wanted to be a “scleroderma comedian”, but with my hands, it’s really hard not to talk about it.  People have questions, and merely my medication gets a laugh because it’s so hard to believe.  But this has to start somewhere, and why not with something that creates laughter.

I don’t think having scleroderma is funny.  In fact, scleroderma is very scary to patients and those who love them.  But the mistakes I have made personally, and ways I cope with it, are funny to me.  So, I’m going to get people to laugh, and learn something, as well as show the world that with educated doctors and medical practitioners who will fight along side their patients, patients can survive.  Nothing will ever trump a cure, but for now, I’m going to laugh at what scares me.

Thursday, July 10, I will be at Aces in Murrieta, California, for open mic.  (Yes, that Murrieta.)

Saturday, July 19, I will be performing at Hot Java’s Deaf Comedy Jam in Long Beach, California.  

Scleroderma Awareness Month

 

Year-round, researchers are gaining ground in the fight against scleroderma.  Doctors who have studied scleroderma and have extensive experience treating patients, are traveling all over the  world to teach doctors, and medical students.  Patients are gathering in support groups to learn about scleroderma, and share ways they cope.  There is much being done, and all of this needs funding.  All of the activities I just listed, are supported by donations, grants and volunteers.  Every June, we unite to support the research, education and patient assistance.  We share memes, we wear teal, write letters to the editor and/or  we gather in parks and walk to raise funds for research of scleroderma.

So if you stop reading this post here, you have read the most important part of it.  Thank you 🙂

I started writing about my journey with scleroderma and sarcoidosis, with a blog called Scleroderma, Sarcoidosis and Box Wine.  I changed the name to The Mighty Turtle in 2012, for easier name recognition. (I know fellow patients can relate.) Since that time, I have had experiences both good and bad.

Back to being sick and tired of writing about being sick and tired…  So here we are, starting a month of Facebook, Instagram and Twitter, flooded with teal, along with the colors of other diseases.  Look, there are just not enough colors in the rainbow for diseases that are rare, not-so-rare and uncured.  In spite of my frustration, I look forward to reading posts, and seeing pictures of fellow patients.  I look forward stories of hope, memorium, and humor where we can find it.

You might be thinking two questions:  ”

1.  Karen, how can I possibly laugh at a time like this?

2.  Are you high?

The answer to your first question is that at the most serious of times, I have found a way to find humor.  Laughter is the icebreaker to deadening silence when hope is lost, and no one is sure what to do next.  It’s not easy, for best results humor should be inappropriate, or at the very least,slightly offensive- because let’s face it, scleroderma is offensive by just being present.  On the science side, laughter also releases endorphins, and helps our brain cope with situations.  Laugh at what scares you.  It will only make you stronger.  (Go ahead, research how laughter is the best medicine.  Millions of Reader’s Digest readers can’t be wrong.)

My answer to your second question:  No, I’m not high. (As far as you know.)

I do mean it when I say I am sick of scleroderma awareness.  There are great organization making breakthroughs in treatment, and clues to a cure.  If you haven’t already, please make the time to learn about these orgs. Sponsor or share fundraisers and make a wish for a cure.  Our lives depend on it.  Thank you.

 

The VA Scandal is Not News to Veterans

I have written many positive things about the care I have received at  VA hospitals.  There are some amazing people who work there, and listen to patients.  I have received medication that would not have been available to me because of cost,  like Viagra and Remicade.  I would be missing fingers and toes had it not been for the VA.

I have experienced and witnessed backlogs in the VA Health Care System since 1994.  What I find so shocking, is that in 2014, people are just now learning this, or at least willing to acknowledge it.   I was at the he Loma Linda, California VA, 2001-2013.  During the ramp up to Iraq, veterans were waiting more than three hours to see a doctor, two hours to get a prescription filled, and stand in line over an hour for travel pay, while we were waiting, Fox News would be on TV, making a case for war in Iraq.  Veterans with their respective war or command ball caps, would gladly talk about how we needed to go to Iraq.  How easy the war would be, and how Iraqi oil would pay for the cost, yet they sat there as casualties of prior wars, waiting ridiculous amounts of time to have their continuing war wounds treated and were so willing to put men and women in harm’s way,  with a back-logged Veteran’s System.  To say I was puzzled, is an understaement.

I was receiving my health care at the VA Facility in Loma Linda, and locally in Murrieta, California, thanks to “golden insurance” provided by our small business.  Both health care systems were crowded.  Murrieta had a population of about 39,000 when we first moved there in 2001.  By 2004, the population had jumped to nearly 90,000.  I remember being in the ER at my local hospital in 2003 during one of my visits, when my blood pressure was high, and there were four of us in one room.  There were pregnant women in the hallways.  I was waiting to see them stack us in bunk beds.  The local healthcare system had been flooded with new families moving to Temecula Valley,  attracted by affordable homes.

I bring the overcrowding of private hospitals into the conversation because I saw both systems become overcrowded because of poor planning.  The community of Temecula Valley, built thousands of houses, but forgot to have infrastructure in place.  just as the United States started two wars, without preparing for service members when they became veterans.  There was a whole lotta of cheering, flag waving and saber rattling, but no plan.  We didn’t learn from Vietnam.  We didn’t learn from Desert Storm.  We were a country cheering about how great we were, and “getting” bad guys.  I even quit listening to Howard Stern,  because he said, “Gas prices will pay for the war.”  I was making my bed I heard that.  I remember what color sheets I was putting on the bed.  I was placing the flat sheet, folding it down, heard what he said, stopped what I was doing, walked over and turned off the stereo.  I don’t know if he was kidding.  Maybe I was just hypersensitive.  Maybe I was just the hysterical female I was used to being called when I was in the Navy, and at nursing stations in VA hospitals.

And Howard Stern wasn’t saying anything that wasn’t being said all over  radio, television and at kitchen tables.  Eventually, I discovered progressive radio and it gave me hope, but over the years,  statements that could fit on a bumper stickers seemed to prevail over facts.

We have a long way to go in order to solve veteran’s healthcare.  This is not news to patients like me, but it amazes me how upset people are getting now, the people who knew the problems of overcrowding existed, and experienced it first hand.  Don’t get me wrong, I’m thrilled people are finally upset about this.  Over the years, I have learned to live within the system by speaking up and crashing clinics like college classes.  Veterans are finally speaking up about backlogs.  I’m not sure if I am angry because it’s taken so long, or because it seems to fit the narrative.  I just hope now that people are talking about it, it will actually receive the change needed, or just be part of political campaigns and fade away after elections.

 

Scleroderma: Part of The Adventure

Three children and a woman.

I recently announced my scleroderma may be in remission.  According to Merriam Webster,  remission (is)  a period of time during a serious illness when the patient’s health improves.

Remission was my word, not my doctor’s.  I have also heard from other patients who will not use remission as well.  The general consensus is, although the definition of remission does fit, and it doesn’t say permanent or temporary, remission is accepted as ceasing of the symptoms.  It fits when referring to cancer.  The cancer is somehow eradicated by treatment, and while in remission, patients do not experience symptoms of cancer.  The difference with scleroderma is, that scleroderma may run it’s course, or symptoms may be controlled by medication, but blood work, and symptoms show scleroderma is present.  The best term I have heard so far in reference to this is referred to as a “holding pattern” by patients and their doctors.

For me to say that I may be in remission is incorrect.  Symptoms will flare.  I will still have good and bad days.  When I spoke with my doctor I was elated that I may have lived long enough to be through the worst of scleroderma, I threw around the word remission, carelessly.  I apologize to you, who are kind enough to read my work regularly, and new patients looking for information.  I was talking about scleroderma incorrectly, and  I am s very sorry.  Of course, I still have sarcoidosis, but it’s symptoms are very mild for me.  I write more about scleroderma, because it’s just more aggressive in me than sarcoidosis.

I was very swept up in the possibility.  One of my best and worst coping mechanisms, is denial.  Like all patients with a chronic illness, I do not want to be sick, labeled as sick or live my life as if scleroderma defines me.  It works well for me, until I get swept up, as I did with the word, “remission”.

The last few weeks, I have been working through depression.  It is something that affects me more than scleroderma, in body and mind.  Scleroderma is a life-long commitment no one volunteers for, but we can choose how we cope with it.  A friend of mind gave me a name for my technique, he told me I am like Lt. Dan, from Forrest Gump.  I liked that comparison because it felt like it rang true.  Like Lt. Dan, I am angry about what life has handed me.  I never ever want to be referred to as handicapped or disabled, and don’t get me started with God.  I of course will not climb up on a shrimp boat mast and curse God during a hurricane, but I am certainly not going to worship God or pray.  (That’s a whole other post.)  For me, accepting scleroderma will always be a part of my life is a sore spot, but I do it.  That may be why I have a great deal of patience with everything else. Traffic or long lines seem like minor things, and a waste of time to get angry about, because eventually a long line will move.

Scleroderma has taught me to live in the now.  I am not in remission.  I may be in a holding pattern, but I will need infusions and medication for the rest of my life- and it will not be cut short.  That may seem unrealistic, but to me that is one thing that is not.  Scleroderma, childbirth and a severe head injury have thrown a lot at me these past 43 years.  I have a lot of life left, and there is treatment for my symptoms.  I will continue to work hard to stay healthy, which we all need to do, scleroderma or not.   I have not yet reached mid-life.  I have a ten year old son, and I plan to see him walk on Mars, and meet his children.  Life is full of obstacles. I choose to make obstacles, part of the adventure.

Hope Is Afoot

Every time I think of things being “afoot”, I think of the movie, Bill and Ted’s Excellent Adventure.  I also just started watching House of Cards, and I have compulsion to editorialize what’s going on to an imaginary camera.  Both events are most likely symptoms of too much TV and way too much time alone with my dog.

 

Tomorrow, I have an appointment with my rheumatologist at UCLA.  Today, I spoke with my primary care provider’s case manager (At the VA Hospital) and arranged to pick up my most current blood work.  I am really liking the VA in Long Beach.  The case manager wants me to contact her tomorrow morning with my doctor’s recommendations.  I do miss the rheumatology department at Loma Linda VA, but driving less was worth the move.

 

Today, I finally accepted what I already knew:  That I do not need a home health  care worker here with me 6 hours a week.  I’m too active now, which feels very good.  When I have to rearrange my schedule to be home to have help, I don’t need it.  I need someone to clean for me, not take care of me.  That’s a huge milestone.  After 45 days in the hospital and weeks of recovery, I’m now too active to have a nurse come over and that feels very good.  I know my family may be reading this and cringing, but they already know I’m not good at sitting still.  Today, though a Monday, was a great day!  I cleaned my own apartment.  The living room no longer looks like a laundry station.  My dog is exhausted and walked.

 

I gathered my test results and read my doctor’s notes from my last appointment.  My prognosis was good with a balance of diet and exercise.  I feel well most of the time, but I can tell my body is dragging from not exercising.  That’s really the last piece to pick up after that 45 day interruption.

 

So, tomorrow is the big day.  Back for my quarterly check up with my rheumy at UCLA.  Things are looking up.  Now the trick is to keep it going,  but hope is afoot and I think I have some great times ahead.  After being diagnosed with scleroderma 20 years ago this October, I never thought I’d make it this long.  I do wonder…  Is there some person who approved my lifetime service connected disability getting chewed out in someone’s office because I wasn’t expected to live this long?  Or is this person celebrating his/her retirement somewhere?  I hope they are celebrating, whoever they are.

 

I really should have worn make-up here.

That’s teleangectasia on my face.

Without the help of the Veteran’s Administration, and service connected disability benefits, I would not be alive today.  I would have had to endure ineffective treatment and it’s side effects, without the option to find a better doctor and pay out of pocket sometimes for a valuable second opinion.  I would probably be missing fingers because I would have had to have someone split a 100mg Viagra tablet into fours because Viagra was non-formulary at the time for Raynaud’s Phenomenon, (Yes, I was prescribed 25mg and the VA did try to get me to split up a 100mg.),  but I had doctors and practitioners who went to bat for me.  I do realize just how lucky I am to be here.  I wonder, why can’t everyone have disability benefits that are well above the poverty level, like me?   And don’t tell me it’s because I’m a veteran.  I think that is bullshit.  This is medical care and resources.  If a person is too sick to work, how can we expect that person to live a full life if they are constantly unable to buy medicine or healthy food?  And just because a person is sick and poor, that does not mean they do not deserve to live a full life.  Look, I don’t think we should send everyone on a European vacation, I’m saying wouldn’t it be nice if they could put their energy toward health instead of choosing between medicine and food?  I’m so tired of reading about sick people putting themselves in debt while being denied Social Security benefits and reapplying.  It’s just stupid.  And really it does send a message that if they just deny people enough, they’ll  die eventually.

 

Eliminating discrimination based on existing conditions is a start.

 

We are making progress, but it’s not enough.  I’m still here because I have had resources not available to most scleroderma patients.  Medication, though accessible, is still very expensive.  I wouldn’t know that because my medication through the VA is FREE.  Yes, FREE.  Imagine how many people might be feeling better if they had access to care and medicine.  Getting the right treatment based on expense rather that what works, is still the way insurance companies do business- and the VA if you don’t fight for it- but that’s a whole other post.

 

I really have no idea what to do about all that.  Is it just me, or did that go on a bit?   It’s your world.  I’m just living it it.

 

Harold Ramis Died Today. Here’s Why This Matters To Me.

Early Monday morning, we lost one of the greats.  I grew up in the 80’s.  I spent many days after school and during my summers watching movies by Harold Ramis.  I had a major crush on him and Bill Murray in Stripes.  My dad once told me when he heard I was going in the Navy, he thought of me as Private Benjamin, but I thought myself more like the characters John and Russell, played by Bill Murray and Harold Ramis, respectively,  in the movie Stripes.

 

I was not the type to wish for a manicure and lunch.  Yes, I was a manicurist, but before I started beauty school at age 16, the only manicurist I pictured was the one Bugs Bunny played in that great cartoon with the orange monster.    Yes, I once aspired to be a hairdresser, but that was not for me because I could not roll a perm.  So, I chose to skip the hair and go straight to the nail license.  But I still wanted more.

 

 

 

 

While in beauty school, I loved learning about the different combinations of chemicals and how they worked together on a molecular level, so I looked into starting my general education requirements toward some kind of science degree.

 

 

 

 

Back when I was in the 4th grade, I wanted to be a doctor, but was told I could not be, because I had no penis. It was 1981 and I was seriously misinformed, but part of a large Italian family where women were groomed to think popping out a few kids and marrying a man who will take care of you, to be a life goal.  It never sat well with me.  In the 7th grade, I discovered my grandmother’s typewriter.  Back then, they had typing classes and a lot of my writing started out as typing drills, but even before that I wrote short stories.  My favorite author at the time was Stephen King (Pre IT.)  My writing was pretty dark and it got darker in my teens.  I didn’t share it with any one.  I was afraid of being laughed at.

 

I repeated the 8th grade and found I had a love for performing live theatre.  I was in a play about pirates.  The whole drama class wrote it. We did the script, made our own costumes and  I had a pretty big part.  I was kidnapped by pirates.  I had a big scene where I screamed on stage and was chased by pirates through our school’s multipurpose room.  It was the biggest thing I had done in my young life- not bigger than holding my younger sister and brother on their way home from the hospital.  (it was the 70’s) So it was the third most important thing I had done.  And my dad took pictures of everything.  I was so excited that my big theatrical moment would be recorded forever on Kodak Paper.  But my dad forgot to bring his camera.

“Convicted?  No, never convicted.”

 

I don’t know if that was a turning point for me, but I did go back to smoking the sweet stinky weed that got me held back to repeat the 8th grade. So,  I went back to smoking copious amounts of pot, but very briefly. I quit  in 9th grade, after I met the most wonderful teacher I would ever meet.  Sure, there

were some great teachers, but Mr. Hoctor, well, he made me want to show up to school.  I would actually ditch other classes to sit in on his other classes.  He’s retired now.  His classes made me want to be a better me. In one class, I did a scene from Annie Hall with this really cute guy I had a secret crush on and got to kiss during rehearsal and on stage.   I had to kill a spider- the size of a Buick, for his neurotic character.  I had so much fun, I wanted more.  Then Mr. Hoctor did a class trip to see Second City perform.  Leaving the theatre, I thought, “I want to do that.”

 

I wanted to do what they did on stage.  I had no idea how, but it’s what I wanted to do.  Mr. Hoctor began teaching improvisation and a show was created.  I tried out for it and got a part as one of the players.  I was so excited, but then, I let my head get in the way.  I eventually dropped out, claiming stage fright before opening night.  I have to say not only was that a douchetastic move by me to to my fellow actors and my drama teacher,  I also hurt myself the most buy not believing in myself.

 

So buried myself in other goals.  I finished ROP classes to get my manicurist license, graduated high school one year early (or on time if you don’t count the being held back part) and tried to be a responsible adult.  I realized I did not want to be a manicurist forever and looked to college.  That’s why I joined the Navy.  I wanted to “get out of Dodge” and earn money for college.  A friend of mine recently earned his B.S. in biology and I wanted to earn my B.S.  I was sure what science, I just knew that I loved science in general, but more than anything, I wanted to have the initials B.S. after my name.  So, I joined the Navy.

 

I finished up my “hitch”, got out got diagnosed with scleroderma, then sarcoidosis.  I spent my mid twenties up until now, in doctor’s offices and hospitals.  Sure, I worked as much as I could, but my “career” title was really: Professional patient. Yes, I could be called professional because the Veteran’s Administration paid me a pension because I am 100% service connected.  -and yes, that is a whole other post.

 

My point?  Decades after I first saw the movies Stripes, Animal House, Caddyshack and Ghostbusters- they are still my go to movies.  I spent lots of time in hospitals, on bed rest or just plain alone, in excruciating pain no doctor understood or knew how to treat for 16 years.  Lines from these movies inspired me to make fun of my pain.  My high school drama teacher inspired me to customize my speech therapy to songs and exercises, and be fearless about singing.  I probably can’t carry a tune in a bucket, but Mr. Hoctor once told our class:  Anyone can sing, you just have to commit to it.  So, I sing in the shower, in my car and take amazing chances endangering anyone within earshot.  Except for my son, who thinks I have a beautiful voice. And really, his ears are the ones that matter most.

 

Today, I read that Harold Ramis had an autoimmune disease.  I never knew that.  Harold Ramis will not be remembered for his illness.  He will be remembered for the great joy and laughter he brought to millions.  For me, it was very personal.  I never met the guy, I just loved his work.  It inspired my sense of humor.  Today, he inspired me to be remembered not for my illness, but the joy I want to bring others with laughter.  I love to write.  I also love to stand in front of a group of people and see if I can make them laugh.

 

I want to get people to stop paying attention to the way my hands look and hear what I have to say.  I want to make them laugh and forget themselves.  I want to be so good at it,  they forget about my hands and allow me to make them laugh.  I want to be remembered the way Harold Ramis will be remembered; for the way he made people forget themselves, enjoy their day, and just laugh and be happy, if only while I had their attention.

 

I owe so much to Harold Ramis and my high school drama teacher, Mr. Hoctor.  I couldn’t write this without mentioning my drama teacher. He planted so many seeds.  Harold Ramis’ work, prepared the soil.  It only took me 25 years to water the garden.  I also feel very fortunate to have parents with a pretty cool video library, and friends with the same great taste in movies.

 

 

 

 

Thank you for reading.  Now please, go watch a Harold Ramis Movie and have yourself a good laugh!

 

1995 Called: They Want Their Government Shutdown Back

1995 called.  They want their government shutdown back.  

 

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

 

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

 

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

 

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

 

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

 

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

 

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

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

 

Thank you.

 

 

Edited for correction October 1, 2013, 8am

 

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


How To Request Blood Tests Before a Doctor’s Appointment

It’s easier than you think!


Patients with chronic illnesses, see specialists for routine appointments four times a year.  Many, like me, are on life extending drugs that can cause damage to kidneys, liver and cause infections, so four times a year becomes a normal routine.

 

I used to be upset because the blood test results my doctor would be reading to determine the course of my scleroderma and sarcoidosis, was often 3 or more months old.  In some cases, as old as 1 year.  That’s because I developed a routine where I saw my doctor first, then went to the lab to get my blood work, then 3 months later meet with my doctor and talk about 3 month old blood work, but have new symptoms that were less than a month old.  One day, my local nurse practitioner I saw while using traditional insurance, suggested I call two weeks before my next appointment and order my own blood work.  So, I tried it.

 

First, I tried calling.  The office staff did not understand what I was trying to do.  Because even though I had a order from three months prior, that order had expired and a new one needed to be made.  And they could not understand why a patient would call in and request her own CBC, Chem Panel and Sed Rate.  I was not talking like a patient.  I could sense their frustration over the phone.  Rather than get angry, I went into the office and made the request in person.

 

I had no appointment.  The waiting room was packed.  It was 2005, and the usual wait for a doctor’s appointment was two hours.  My ex-husband and I owned a small business together, which made it possible to have insurance, but that’s a whole other post….

Temecula and Murrieta had grown so fast in the housing boom and medical practitioners were up to their elbows in over bookings.  I stood in line at the reception desk and simply said, ” Hi, my name is Karen.  I have an upcoming appointment with Dr (Name withheld) and he will need current blood work.  May I request an order for blood work  from him?”

 

Yes, they did look a little confused.  The receptionist asked me to take a seat and she would be right with me.  So, I took a seat.  I expected to wait so I brought a book.  This was before tablets.             (Could we call that Post Book Era or PBE, maybe  Pre Tablet?  Whatever.)

 

Te receptionist called me back to the desk.  She asked me to write down my request and she would call me when the order was ready for me to pick up and take to the lab.  (This was also before lab orders could be sent electronically.)  So, I wrote a friendly greeting, told my doctor about my idea and listed the tests.

 

A few days later, I received a call from m doctor’s office and was told my lab orders were ready.  A week and a half later, I met with my doctor for my “routine” appointment.  He was impressed by having such current blood work.  To be honest, I was happy to be talking about what was going on with me right now, and not three months ago.

 

I made it my routine to call his office and the receptionists knew exactly what I needed, because I went in person and explained what I needed.  It took up extra time, but saved me time in the long run.  My phone calls would sound something like this:

“Hi, this is Karen Vasquez.  I need to get an order for my labs.”

 

The reply:  “Sure Karen, what tests do you need?”

 

“I need a CBCChem PanelSed RateANA and I think it’s time for my PFT’s. Can we get an order for that as well?”

 

“Sure, Karen.  Talk to you in a few days when the orders are ready.”

 

Now, I manage my scleroderma and sarcoidosis and receive treatment at my local Veteran’s Hospital.  Labs are in the computer, no calls need to be made.  I also know that many with scleroderma, or many with a chronic illness (or two) do not enjoy the care I get.  I am very lucky to have access and I know it.  I hope that my posts help others become their own best advocates.  It;s possible.  It’s frustrating, but  there are so many different types of chronic illnesses that share many symptoms, we need to know what we need, so that our providers get it right.

 

So, if you skipped to the end:

 

Request your lab orders before your doctor’s appointment is you want to.  Don’t be afraid to ask or speak the “language” your doctors and providers do.  And if you have a boyfriend who tells you to “stop talking like you are a doctor, because you aren’t.  Stop trying to act like one.”  He’s threatened by your intelligence.  His reptilian brain has not evolved to match his human body.  Break up with his dumbass.   Just sayin’….

 

Links in this post:

Mayo Clinic

ANA Test

Pulmonary Functions Test 

CBC


To help cure scleroderma, please visit Bounce to a Cure.


To learn about Scleroderma Research, visit Scleroderma Research Foundation founded by scleroderma patient Sharon Monskey.


To find a scleroderma support group near you, visit The Scleroderma Foundation.

 

Also, check out Scleroderma of Trinidad and Tobago.  


So many orgs, please check out The Mighty Turtle on Facebook for more.


Paraffin and Scleroderma: Comments on an article about scleroderma.

There is an article about a woman with scleroderma in the United Kingdom all over Facebook and too many social networks to list here. I have a few comments to make. Her methods of skin care work for her and kudos to her for having the time and resources to have a full body paraffin bath every day, but I have a few comments and some alternatives.

picture of oils for skin moisturizing in various   containers

Oil feels nice, but the type of oil used may create more work.
Applying oil can appear to be helpful, but many oil based products only coat, and do not penetrate to moisturize skin, especially petroleum based products. As someone who has used olive oil, Kama Sutra oil and too many moisturizers to name here, I can say honestly that oil coats the skin, leaves marks everywhere and leaves (me, it may vary for others) a dry skin surface in about 15 minutes. Many products claim to have “essential oils”, but if they come in a plastic container, they are not true essential oils.

Undiluted essential oils should  only be stored in glass containers, because a true essential oil will may break down the plastic. The right essential oil can  nourish moisture starved skin because it will penetrate, not coat.  Essential oils can appear more expensive, but you need less of the product.  To find the best essential oil for you, don’t be shy about asking for samples or asking for a low priced sample to take home and try a few days.

Essential oils are not your only option.
A great non-petroleum based cream or lotion works well if you can find one.  I have had great luck with Aveeno Moisturizing cream oil with sweet almond oil and Eucerin.  Currently, I use Votre Vu’s Snap Dragon on my body and their hand cream Duette for my hands because I love it, and I sell it (for full disclosure) so I get a great deal on it.    If you have something that works, don’t go searching for an essential oil.  (If it ain’t broke, don’t fix it.)

Ahhh, Paraffin.  It is nice…
Paraffin does work, but as a full body bath, the first thing I thought, (okay, second thing I thought…)  was this sounds wonderful, but is an unrealistic and expensive option for most scleroderma patients.  A simple hot bath with immediate application of a non-petroleum based moisturizer while wet, followed by stretching or assisted yoga (after drying off and dressed of course) will provide the same benefits.  A hot bath will warm the muscles, making them easier to move, which is the objective of the paraffin bath.  When I first started exercising again in 2005, I would take a shower before and after.  Warming up those muscles before warming up, is good for body and mind.

The professional manicurist in me speaks up: 
I have been working with paraffin since 1987. First as a manicurist, then as a scleroderma patient. A full body bath in paraffin really does sound awesome, but I would like to offer an alternative for 2 reasons.

1. Patients with raynaud’s have a bigger risk for burns with paraffin. If one with raynaud’s were to place their hands in a paraffin bath that was even slightly too hot, it can cause tissue damage to the extremity, going from extremely cold to hot. And because of impaired temperature sensation, a raynaud’s patient may not be able to detect the bath is too hot. Thermometors can fail.

2. Open sores. One must never use paraffin if there are any wounds because of risk of infection.

Tips for using a parrafin bath for patients with Raynaud’s:

1. Place hand in plastic paraffin bag, then dip bag into paraffin.

2. Scoop hot wax with hand using the bag as a barrier between hand, then turn bag inside out when removing from paraffin wax. (This will take practice. Don’t be discouraged by a little mess)

3. Now, you have a bag of wax and you can feel how hot the wax is through the plastic. Use your forearm or wrist to touch the outside of the bag to feel how hot the wax inside the bag is. If it is too hot for your forearm it is too hot for your hands, feet or whatever it is you are placing in the wax.

4. Once the wax feel cool enough to tolerate COMFORTABLY, place your hand inside the bag.

Never, EVER use paraffin wax when you have an open wound or pressure sore.  Yes, even a paper cut.  Don’t make me show you pictures of infected wounds- it’s nasty!

For more information:

Medscape detailed article: Musculoskeletal rehabilitation in the person with scleroderma.

Pub Med Abstract: Musculoskeletal rehabilitation in the person with scleroderma

Raynaud’s Risks and Prevention

The Scleroderma Society

Tips for Living with Scleroderma, by Scleroderma Research Foundation

To help fund research for scleroderma, visit: Bounce to a Cure

FAQ for Raynaud’s by The Raynaud’s Association

Handy Hints for Raynaud’s by Raynaud’s & Scleroderma Association, UK

Visit The Mighty Turtle on Facebook for more scleroderma organizations.