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.)

 

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: Part of The Adventure

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.

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.

 

My Letter to Congress to Urge Funds for Scleroderma Research

This is just one thing I did this morning, which took about 10 minutes. Okay- probably 20, I’m a slow typist.

Here was the reply I received in my email. I omitted personal information to post to this blog, like my address, etc…

To get started now, click HERE

Here is the response I received and a copy of my letter:

Your Letter to the President and Congress

 

Karen, thanks for taking action on behalf of Petition2Congress. Your messages are on the way.

 

An individual copy of your letter will be sent to each official:

 

August 7, 2013

 

Dear President Obama,

Dear Representative Lowenthal,

Dear Senator Boxer,

Dear Senator Feinstein,

I was diagnosed with scleroderma at age 23 by the Veteran’s Hospital in Madison Wisconsin after having symptoms in the Navy. I am still here because I had access to healthcare and treatment I often had to fight a male-centric healthcare system. The VA has improved the treatment  f female veterans exponentially. However, there are many patients who are not getting the proper diagnosis and treatment I was able to receive. This need to change. It starts with research, and we have lots of work to do. You will be hearing more from me at TheMightyTurtle.com & a page I started to introduce the possibility of surviving scleroderma: Unstoppable Me: https://www.facebook.com/pages/Unstoppable-Me-Karen-Vasquez/217918321693555

 

Loma Linda VA is overcrowded, like many VA’s across the country. I recently relocated to be closer to a VA that could help me manage my care in Long Beach, California. Not every patient has the luxury to be able to move where there is not only a great medical facility, but family and friends nearby.

 

One thing I have learned and has been found in research, is that many diseases have similar symptoms and research of other diseases has led to effective treatment of different diseases. For example, I also have sarcoidosis. I was diagnosed in 2007 after fighting doctors to do further tests to determine my symptoms were not just scleroderma. After my diagnosis of sarcoidosis, I was prescribed Remicade, normally a treatment for rheumatoid arthritis. My symptoms are now under control and I appear to be in remission with medication. I also take viagra 4 times a day, which was originally designed for infants with pulmonary arterial hypertension. I was the very first female at the Loma Linda VA to be dispensed Viagra. Getting Viagra did not come without a fight and months of waiting. Many patients do not have time to wait for approval and are dying as a result.

 

I urge you help. People are dying simply because they lack money and resources.

 

Thank you,

 

Karen Vasquez

 

And now, the formatted letter:

 

Congress, please support this Petition by directing the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the National Institutes of Health to expand research related to scleroderma, development and evaluation of new treatments, research on the relationship between scleroderma and secondary conditions including: pulmonary hypertension, gastroparesis, Raynaud’s phenomenon, and Sjögren’s syndrome. Establishment of family and “childhood-onset” patient registries. Support for the training of new investigators. Direct the Centers for Disease Control and Prevention to establish a scleroderma public awareness campaign highlighting disease symptoms, prevalence, related conditions, and the importance of early diagnosis.

 

This Petition is very important to patients and family members living with Scleroderma. Thank you in advance for your consideration of this Petition.

 

Sincerely,

 

Ms. Karen Vasquez

Long Beach, Ca

 

You can still also have your letters printed and hand-delivered to each official for just $3 each.

 

Thanks again for taking action, and keep this email for your records.

 

Also, be sure to visit http://www.petition2congress.com/ for more important action items.

 

 

 

Help Spread the Call-to-Action: Tweet This

 

Bounce to a Cure for Scleroderma

Last year, James Roumeliotis, founder of Bounce to a Cure made it into the Guinness Book Of World Records for The farthest Distance Traveled on a Pogo Stick.  Watch this inspiring video with highlights from James’ Journey through Pogopalooza’s Park at The OC Fair in Costa Mesa.

This year, James will attempt to break another world record at Pogopalooza 10 in New York.  I will be cheering him on from California and sharing about his progress.  Please visit and like Bounce to a Cure’s Facebook page & like and if you are twitter, you can find him @BouncetoaCure.  He is using his talent to help scleroderma patients by raising awareness and funds for scleroderma research, for the Scleroderma Research Foundation.

I admire James and I am so honored to be working with him to help spread the word!

Visit his website, Bounce to a Cure.  He’s working with some partners you might recognize.  I don’t want to give too much away, but you may see a turtle there…

Getting Scleroderma to Trend on Twitter is Not Just About Scleroderma

I am honored that The Pulmonary Hypertention Association has posted what I wrote about this monday’s upcoming Twitter Event: To get #scleroderma to trend world-wide.  There are many overlapping and associated conditions.

Please visit their Associated Condition Patient Blog! 

 

 

I know that you already knew this about me. This also describes you!

 

Surprise! I have toes!

I have been attending Krav Maga consistently and something happened tonight.

You know that “Soldier Crawl”?   I had modified it using my forearms and knees.  Today,  I was crawling, and quite naturally, my toes took over for my knees.  It felt natural, and surprised me.  It only happened twice, but it happened.   I did the “soldier’s crawl” as it was supposed to be done,  for a few moments.

This is kind of how I felt when realized my footing was getting better.

 

I tell myself every day that if I keep moving, my range of motion will come back.  I know it will never be what it was before, but there is potential and now realistic hope my range will improve.

I had another revelation: My toes are not useless.  They’re just fused and different, but they are not lost.

I’m encouraged, exhausted and sore.   The good kind of sore.

Scleroderma, Sarcoidosis and Skin Care?

All my travel, education and maintenance for The Mighty Turtle, is covered by me.  I seek no sponsors, because when someone writes a check, there is an obligation of loyalty for their support.  That’s something I put upon myself, but hey, I like sleeping at night.

Here’s why I don’t seek sponsors:  I am free to say what I want.  I can support, or not support any non-profit I wish based on my perspective as a patient.  I can make jokes that are more adult than PG-13.  I did consider becoming a non-profit, but I want all tax deductible donations to go to research and eduction by existing non-profits doing outstanding work.  I just do not see a point in the wasted expense of  corporate fees for my silly blog.  The thing is, I’m not just a blog.  I volunteer my time and I attend education events.  These things cost money.  I am “lucky” enough to have disability benefits from the Veteran’s Administration and access to world class healthcare, but I’d like to attend fundraiser to show those who contribute that people can lead productive lives once symptoms are under control.  I am in a remission-esque state.  My prognosis is good and I’m feeling good.

I have had a lot of kindness bestowed upon me by people I have never met in person, who send well wishes, prayers and thoughts.  I have also met many who do not have access to health care.  Good people fighting for disability benefits, and vilified by the media and neighbors for seeking help while fighting for their lives.  And once they get help, they are “awarded” a pittance that is gobbled up by medication copays, food and rent.  And while they live on these benefits, they endue ridicule from people who think they don’t deserve it.  It’s not that there is a majority of douce nozzles who vilify the sick, poor and elderly.  There certainly is an abundance of douche nozzles, but it has been my experience that they are the minority.  Douche nozzles just yell the loudest, so they are the ones being heard.  I want to change that.

The thing about being an activist is, in order to go places and do things, I require money to get to events.  Some activists are lucky to be self sufficient.  Some work a full time job and do activism in their off time.  Some have benefactors or sponsors to help their work.  My problem was, I needed funds to go places and do things to further my mission, but I did not feel comfortable asking for donations or working for a non-profit. I am also in no condition to hold down a full time job.  If I need to rest, I need to be able to rest and recover. Now, I have a solution.

Yesterday, I became a Brand Ambassador or sales rep for Votre Vu.  Everyone has skin, it’s a product line I can stand behind and feel comfortable recommending to others.   I get to use my unique set of skills as a manicurist and beauty school drop out.  Sure, yoga pants and novelty t-shirts are a staple in my closet, but I know skin care.  Working as a Brand Ambassador for Votre Vu will help with expenses to get out, and show the world that high quality health care and the right treatment; not most cost effective treatment, saves lives.

So, in order to get my business going, I have started a Facebook page and Twitter.  This way, I can raise awareness without a bunch of “words from my sponsor” mixing my business with my activism. Yes, they will mingle like chocolate and peanut butter at times, but I will do my best not to make it a regular thing.  

Today,  I am writing about it to grow my business- of course, but I want to make clear my mission: Raising awareness and assisting non-profits without compensation.  I don’t want to be compensated by non-profits because it allows me to work with any non-profit I wish.  I play nice in “The Sandbox” with everyone who is working for cures and making information freely available.  I have the freedom of not competing for funds.  Non-profits have to work to get research and education funds from donors.  I want to help.

So, I’ve taken this post and rambled about my plans.  Thanks for reading.  Please “like” and “follow” where applicable.  And if you have an occasion for a gift or would like to try some great skin care, please keep my Votre Vu store in mind.

Now, back to our regularly scheduled program…

What Would Jesus Really Do?

It’s that time of year when Christians reflect on the sacrifice Jesus made for us all.  Honestly, I think many people focus on the torture & death more than his great works.  Look at the symbol:  A emaciated body nailed to two pieces of wood.  That’s not what Jesus was about.  He was crucified.  It  happened to him.  He spoke out and made things happen.  There is a difference.

And Jesus said, “Screw the rapture. You all stay here and keep fighting over guns and eggs. I’m going to a pool party.”

Jesus was about love.  He was about teaching  that we are in this together and we need to be taking care of each other.  If Jesus came back today and saw everyone fighting over guns, while people died of treatable illnesses; no one would be raptured. Not even you, Kirk Cameron!  (By the way… That crush I had on you- totally over it!)

Every day I surf the internet.  Some days I get lucky in the sea of information and ride the wave of a patient’s successful lung transplant or remission, but usually I just drop in on a wave of obituaries, memorial web sites and fundraisers in someone’s memory.

I participated in a chat between Treatment Diaries and Michele Lonabaugh, of  52 Shades of Blue, and something a participant in the chat said, really hit home with me.

Andrew Lopez, RN said: “…most #oncology#cancer research, funding goes to primary cancers, not Mets.#treatdiarieschat

Which explained a truth to me that I have been pounding my head over for years: “The “meat” of research funding goes to the popular  diseases and the scraps go to the ones not so pretty.

You know what I can’t figure out?  That, with all the popularity of making it cool to use the term “boobies” to raise money, wear bracelets and shirts that say “save the Tatas” with all the cheep chachkie’s in landfills; I can’t figure out why people are still dying from tit cancer.

It’s all money.  There is research done that makes amazing breakthroughs.  I am so frustrated because I get all the Viagra and Remicade I need, while others wait for a pencil pusher from an insurance company to tell someone who could benefit from treatment ,that it’s not “in their formulary”.

And why?  Because we don’t want to be communists.  Because we are to stupid and to profit driven and have it ingrained into our psyche at birth, that socializing something  will lead to the end of capitalism.

I know what you’re thinking, “But Karen, we can’t socialize healthcare.  That would make us communists.”

Yes, the worst possible thing that could happen is we will become communists because we cured some people.  God forbid we take care of the sick.  Oh wait… Isn’t THAT what Jesus would do?

No.  Making medicine and care available to everyone who needs it would not make us communists.  Taking care of the sick would make us more Jesus-ey.

So while you are all hunting for Easter Eggs after church this  Sunday, or worrying about the “potential life” in a perfect stranger’s eggs,  I will be wondering if anyone will ever get Jesus’ message.  At least anyone who can make a difference.  Right now, I see a bunch of people fighting over money.  Not care, not health and certainly not behaving like  one who walks in Jesus’ footsteps.  Forget about the rapture.  We would’t deserve it anyway and  Jesus has better things to do, like go to a pool party.

I am so probably going to copyright hell for this. It’s from Funny or Die.

 

 

Let’s actually cure something.  Let’s have all the money go to research,  dispensing of drugs and treatment.  Ron Burgundy movies have, and will continue to provide us with an abundance  of quotes to put on t-shirts, with plenty to say about guns and boobies.

 

U Tube clip from The Guitar Guy

Things Jesus and friends said.