Memorial Day 2013

What started as a Facebook status for Memorial Day, turned into something that I felt need more that just Facebook “status”.

Remember that “Supporting The Troops” means that we remember they are the very strongest of the “We The People”. That “WE” never be thought of as a “necessary casualty” without profound consideration of the consequences of putting “We” in harm’s way.

Remember that those who serve, take an oath to make the ultimate sacrifice and that by connection, those who risk losing them, silently take that oath as well. Willing or not.

Gravestones with flags planted on them for memorial day.

Remember the chaos when they return home. We must do better than empty promises and talking points.

Remember to never send any of “We”, into harm’s way without everything they foreseeable need.

Here are some things we can agree to pledge, if we believe this nation is “Under God”, or not:

Pledge that before we put those in harms way, that we have resources before they go, that would never force them to fight when they return.

Pledge to never again put those who serve in harm’s way, with talking points and patriotic phrases. If any reason to send others can fit on a bumper sticker, we need to get back to work.

Pledge to never forget things that were said, like, “Gas will be practically free, if we invade.” ANY country. We cannot forget that. We must remember, so it is never repeated.

This Memorial Day, remember our “Troops” are not just talking points, buzz words and bumper stickers. Let’s honor the fallen, by thinking before we act.  Always.

The “Bromance” of Vanity & My Lungs

I have pulmonary fibrosis with my scleroderma.  I speak to the parts of my body like they are separate entities to remind them I know they are plotting against me and I will keep throwing a wrench in their maniacal plans to kill me.  I love my lungs for so many reasons, but they are part of this plot, so I am going to keep them submissive by exercising them.  My lungs used to complain, but now they are in compliance.

It used to be really hard to exercise.  Walking across the room took effort.  Then, I discovered yoga and I learned deep breathing to get those lungs expanding. Once my problem – sarcoidosis- was identified as the culprit, things got even better.  After years of difficulty breathing, I was finally diagnosed with sarcoidosis.  The symptoms were mistaken for scleroderma, because difficulty breathing is a common symptom.  But persistence paid off, I read my own radiologists reports and brought them to doctors until one finally ordered a PET scan and thoracic biopsy to find that sarcoidosis granulomas were making my lump nodes swell.  This restricted movement of my lungs so they could expand, thus creating difficulty breathing.  Now I am on the right medication to keep those granulmas in check.  Stress does make those granulomas swell, so I also have sedatives handy.  How can I face what I need to do in any situation if I have trouble breathing?  Don’t judge, it works.  I have to be able to breathe or defeats the purpose- of everything.

Now, back to the pulmonary fibrosis:  That’s courtesy of scleroderma.  My lungs are scarring, but I am keeping my lungs working by making them work.  I have a use it or loose it mentality.  Of course there are no studies I can site right now, but fighting a disease is 10% physical and 90% mental.  Or 10% mental and 90% physical- again, who cares, our mind can be the most powerful part of our bodies.  If you tell yourself your dying, that’s true whether we have a positive attitude or not.  We’re all going to die eventually.  Some of us just have an idea how.  And even that’s inaccurate because I could fall down a flight of stairs and break my skull and none of the treatment and meds I have been taking could help me with that.  So, can we really control what life throws at us?  For our purposes and lack of time we have for a philosophy class this minute, the short answer is, no.  But we can control how we face them.

So, how am I facing the ongoing progression of my lungs scarring into fibrosis?  I am working to sculpt my ass into perfection.  That’s right, I am taking the focus off whats going on with my lungs so I can wear a bikini and look damn fine.  And I don’t mean unhealthy looking either, I want a fine ass I can be proud of.  The side effect:  I am eating healthier- no, I’m not starving myself.  I had some yummy pineapple upside down cake, soda and what may have been the best steak tacos in my life, last sunday.  Nthing suer complicated, I am just committed to doing at least 30 minutes of cardio fitness every day.

Back in 2005, I stated with deep breathing.  I even wrote a post about how deep breathing is exercise.  This is an updated version.  I think about what is going on with my body and no matter what I do, until there is a cure, my scleroderma and sarcoidosis will continue to progress.  My condition is stable with medication, but I know I need to do more than medication.  Not just for my symptoms, but for my own sanity.

Some of you may not know this, but I have a tendency to be a control freak.  When I was first diagnosed, I tried to control acceptance of my symptoms by simply ignoring them.  I continued to drink and occasionally smoke.  Then, once I quit those, used my energy to point out what I perceived to be everyone else’s problem.   Finally, I faced myself, accepted what was happening and continue to use that acceptance to stay alive, active and sane.  (Determination of my sanity is entirely subjective by my own observations.) 

Then came a time when I took a look at what my body is doing and for lack of a better term, freaked the
f**k out.  Then, I remembered the most important thing I learned from The Hitchhiker’s Guide to The Galaxy and stopped panicking.  Reading the book Illusions, by Richard Bach has helped tremendously as well.  My point is, it’s all about perception.

picture of a butt

Everyone needs a goal. This one may be a little vain, but it’s more fun to work for this than to think about keeping lung tissue moving to keep it from hardening. Enjoy the eye candy borrowed from @regretfulmom.

So, the family friendly term for exercising is: I do it for my health.  The truth is, I’m a bit vain and I’m using that to motivate me to exercise.  I want a booty I can bounce a quarter off of (see, vanity isn’t all bad, it helps me breathe.) The “secondary” benefit of my lungs working, keeping that fibrosis from hardening my lungs and being strong for the fight is the icing on the cake.  Right now, I just want to look good on the beach.  Because that’s where I want to be:  Living in the now.

 

In The Activist Spotlight, Paul Fugelsang: Trailblazing for Mental Health

 

Bonus Prompt:

Nominate a Health Activist and Share Why

I have nominated Paul Fugelsang for a 2012 Wego Health Activist Award: Trail Blazer.  I wrestled between Silver Stethoscope and Trail Blazer because  Paul is a practicing, licensed therapist in North Carolina.  He has come up with a way to help clients see therapists who will offer mental health care at reduced rates.  Paul Fugelsang recognized the  biggest barrier to mental health care in the United States is money; and he is doing something about it.  I was inspired to share his work here in The Mighty Turtle’s Fundraising and Activist Spotlight.

Those of you who keep up with this blog, know I receive outstanding mental health care, courtesy of my friendly neighborhood Veterans Hospital, but there are millions of people in our country going without the proper mental health care they need because they are not “lucky” to be a service connected disabled veteran.

People go without because they fall through the cracks.  They make too much money to qualify for aid and if their insurance  does cover mental health care,  it’s often inconsistent and  short term because of higher copays. There are waiting lists,  long office waits  times and some mental health clinics offered are on a first come first serve basis.  The United States has come a long way with progress in mental health care, but we still have a long way to go.  There is hope because of practitioners like Paul Fugelsang, founder of  Open Path Psychotherapy collective: A program that will connect patients with therapists.  

In Paul’s words, “Open Path Psychotherapy Collective will be a network of like minded mental health clinicians dedicated to reaching those individuals and families who are falling through the cracks. The Collective—with the support of the Foundation for Excellence in Mental Health Care (FEMHC)—will match participating clinicians with individuals in need of local, in-office mental health care—for a steeply reduced rate.” (From Interview with Kelly Carlin.)

Paul’s goal is to “Create a nationwide collective of mental health practitioners who are in private practice who all agree to see one or two low fee paying clients. A goal of 2500 sessions per week… of low fee therapy nationwide.” (As said in an interview by Kelly Carlin.)

I think it’s an excellent start to an amazing, non-profit nationwide program to help those who need mental health care and are  falling through the cracks.  How is that NOT  trailblazing?  Go now and nominate Paul Fugelsang for a 2012 Wego Health Activist Award.  Then, be sure to spread the word about the fundraising that ends November 15th.  After that, watch for the launch of Open Path Psychotherapy Collective.  Watch Paul blaze a trail to help those who seek it, get mental health care they need.

 

Why I Choose to Leave Public Nervous Breakdowns to The Kardashians

How do I decide what to share?

3. Will anyone else but me care?  No= Pick new topic

2. Do I have valid research to back information I talk about? No= Pick new topic

1.  Should I post about an ongoing unresolved  crisis?  No= Pick new topic.   Solve crisis privately, post when there is a resolution to crisis. NEVER, EVER televise the nervous breakdown. 

Why?  Why shouldn’t I share my most difficult moment as it’s happening?

Let’s take a trip back in time to a simpler era, 1996.  It was not so simple for me.  I was in denial about my health.  Long story short: I coped by drinking lots of alcohol, smoking and pointing out what I thought were everyone else’s problems.

It was a great way to loose friends and alienate people.  It was also a great way to exacerbate my Raynuad’s phenomenon with my smoking, weaken my immune system which was already being suppressed by methotrexate to keep the scleroderma from progressing.  Is it any wonder I developed MRSA while smoking and drinking alcohol in the early stages of my scleroderma diagnosis?  Not to me.

Now, imagine I had a blog and a video camera in 1996.  I know that self righteous person in denial that I was, would have been video blogging while drunk and smoking. How is THAT helpful to anyone newly diagnosed?  It’s not.  I was in a mental state that required help.  I was in no shape to be offering it.

I can only say this because I was lucky enough not to be diagnosed in an age when social networking and video blogs existed.   I needed something private.  I needed help with my own mental an physical health.

Now, I am in no way discouraging patients who are having a rough time to avoid social networking.  In fact, I encourage patients to seek support online.  My two favorite sites specifically for patients to reach out to one another are; Inspire and my new love, Treatment Diaries.  I want to encourage other patients to use time spent televising the nervous breakdown, to instead use it to solve the crisis.

There are different audiences for watching nervous breakdowns and  the choice to televise one’s own to me is the equivalent of the  judgement to making a sex tape.  Here are but two of the types of audiences I have observed:

1. People watch it in the way they watch a train wreck or the Kardashians:  It’s just so F**&$ up, they can’t look away.
2. Patients looking to justify unhealthy coping skills.  They see a blogger who claims to know a thing or two and appears “sicker than they are” and think that coping with alcohol and smoking is okay.  It’s irresponsible as a blogger who claims to be helpful because the video blogger having the nervous breakdown is planting the seed, “That person smoked and drank- that person is okay, so smoking and alcohol won’t hurt me either.”

Now I know that people have their own minds and many cannot be easily influenced, but at a critical time when someone is seeking information about a potentially fatal condition over time, looking to a blogger drunk and smoking is not helpful.  Allow me to provide an example of someone I knew who died too early because she refused to quit smoking and drinking after her diagnosis of scleroderma.

A family friend was diagnosed with scleroderma.  She was in the early stages.  She began drinking more heavily, and continued to smoke.  Eventually, she developed pneumonia, went into a coma and died.  No one will ever know for sure if she would have lived longer had she not been smoking, but here are some things to ponder:

-Someone with a smoker’s cough might be less likely to visit a doctor before bronchitis becomes  pneumonia.

-Smoking greatly decreases the body’s ability to fight infection.  Alcohol, impairs judgement.  I have been more likely to smoke more when I did drink and smoke.  Anyone else experience this?

That this person was unable to detect an upper respiratory infection,  fight pneumonia and was a heavy drinker and smoker is a correlation, or variables existing at the same time.  That is the relationship, in her case, of scleroderma with drinking and smoking.  As I said earlier, no one will ever know if she would have lived longer.  We only know these conditions existed together.  Had the smoking been eliminated, maybe she would have seen her doctor in the early stages of an upper respiratory infection.  As a person fighting for his/her life, what would you choose or advise a good friend to do?

Televised Meltdowns- on purpose:
Having a meltdown online while smoking and drinking, to me is irresponsible as a blogger that wishes to help others.  It is important for a  blogger who claims to be the example and teach others, to be the example or cautionary tale with a helpful resolution or show the negative effects this type of behavior has.

Now, onto having a nervous breakdown online in a blog post or video without a resolution:

Please, step away from the computer, put down the camera and seek help through a licensed practitioner, family member or friend.  We all have friends online, but they may only be able to help though social media and that may not be enough.  Distance therapy can be done through Skype by licensed practitioners, but you can research their credentials.  It’s helpful to seek support from peers.  It is counterproductive to try to solve your own problems by seeking the help of someone in their own crisis.  We can still learn from them, but again, nothing helps more than a licensed practitioner, trusted friend or family member.

We all have online “friends” but if you are in crisis, ask yourself these questions before looking to them for advice.  Take time to ponder your own answers to these questions.

1.  Have you met this person in “person”?
2.  Are they in crisis?
3.  If so, have they resolved this crisis in a healthy or helpful manner?  (Been there, done that does not qualify as helpful  if “friend” is still “there” without seeking help.)
4.  Does this online “friend” criticize your decision to seek help outside their community?

So, I still have moments of depression and fear of the progression of my disease.  I cope with these issues, find a solution and blog only if helpful to others.  I do not want to be that person where someone watches my video blog and thinks, “For God’s sake, someone put down that camera and help this person.”  I thought that after watching the videos of Anna Nichole Smith after she passed and will now leave online meltdowns that to the Kardashians.  I have a strong support system of friends and relatives who will  help when I need it.  If you are a patient and friends and family are not an option for you, I urge you to please visit Treatment Diaries, and contact a health practitioner to get help.

Thank you for reading.

Resources:

Scleroderma Research Foundation: http://www.srfcure.org

Treatment Diaries: http://www.treatmentdiaries.com

Inspire: http://www.inspire.com

Read about The Open Path Psychotherapy Collective: http://www.huffingtonpost.com/paul-fugelsang/mental-health-care_b_2017486.html 

Here is a link to the fundraiser that will make Open Path established  and  provide mental health services to patients who fall through the cracks.   If you know anyone who may want to contribute, please share.  This is to be a nationwide program and there are only 11 days left in this fundraiser.  http://www.indiegogo.com/oppc

Psychology Today: Find a Therapist.  Ask about sliding scale fees.  http://therapists.psychologytoday.com/rms/

For Veterans: http://www.mentalhealth.va.gov

The day I decided to seek help: Making It Stop By Making It Through