My Health Works with Me to Fight Scleroderma and Sarcoidosis.

                                     Day 8, A letter to my health.

Dear My Health,

Thanks for sticking through all the crazy things going on.  You have been there for me through thick and thin.  I have often heard from doctors, “With all you have going on, you are very healthy.”

At first, I thought these doctors were nuts, then I had a kind of awakening.  After 18 years since my first diagnosis and 22 years since my onset of symptoms,  I’m still here. Health, you have been enduring an onslaught of attacks from the complications of scleroderma and sarcoidosis like;  contracted hands, Raynaud’s, difficulty breathing, limited range of motion and near death experiences: but with every setback,  I recover by adapting to the changes and doing everything I can in my power  to stop progression because of our combined strength. 

I may sound overly happy and kind of sucking up to you right now, but I really feel that the diseases, scleroderma and sarcoidosis are just a part of my life.  Without other aspects of my health that existed, my body would not have been strong enough to handle what came my way.  Yes, my hands are severely damaged.  Yes, my lungs have parts that are scarred by pulmonary fibrosis and my depression was at one time was life threatening.  We both almost lost our fight  then.  I was so disappointed, you joined me and we stopped eating until we nearly starved to death.  But then, we went and got help with our depression.  It wasn’t and is still not always easy, but you fought back and kept me moving to get the treatment I needed.  You, Health, kept me stubborn.    Stubborn and pig-headed.  Just ask my mom and dad and my Aunt Vicky and a barrage of cousins.  I have one hell of a stubborn streak and you and I both  use that stubbornness to keep going.  Yes, it’s good to be a Scorpio.

In 1996, when my fingers were covered in ulcers, you kept the rest of my body going.  Somehow, I had the strength to get the help and treatment I needed four hours away at the Veteran’s Hospitals in Madison and Milwaukee Wisconsin and saved most of my thumb and the rest of my hands.   I kept smoking and eventually you smacked me upside the head and made me quit smoking in 1998 by remaining patient as I smoked less and less.  I’m not even sure the exact date I stopped because you gave me time to phase smoking out of my daily habits and cigarettes became an afterthought and inconvenience.    Thank you for not giving up on me.

When I was pregnant with my son, you made it so I had seven months of feeling like I had no chronic illness.  It felt good.  It was short-lived, but I enjoyed it and that seven months inspired me by giving me hope that feeling good was possible.  Health, thank you for the warning signs of seeing orange spots that got me to the hospital and saved both me and my son’s life.  I had no idea my blood pressure was so high, but after all these years of listening to you, I have learned to take a hint.  I do wish we could’ve lowered my blood pressure before the c-section so they could’ve told me I had HELLP Syndrome, another pregnancy would most likely kill me and ask me if I wanted my tubes tied, but hey- I’m cool- we’re still here aren’t we?

Health, you can be demanding. You are not shy about letting me know I’m not eating well by throwing my GI track out of wack to get me on the right diet or eating style.  I know at first, we both didn’t want to change our diets and all that scar tissue I didn’t know was covering my esophagus allowed us to enjoy jalapeños during the first trimester when pregnant.  We’re not perfect.   Oh such good times, but we learned our lesson, didn’t we?  Thanks for hanging in there while we worked together in speech therapy to develop good habits and keep food going down the throat and not into our lungs.

Remember when we did yoga every day for over a year and regained the ability to walk barefoot and better range of motion?  Such  good times.  Thanks for hanging in there while I try to get back on track.  I have really been slacking, but I know you are going to help me get through this and we will both enjoy the rewards that come with it.

Health, we’ve been through a lot together.  Thanks for fighting with me and not giving up.  We’ve got about 50 years to go so we can see our son go to Mars and meet our grandkids.  Thanks for continuing to fight the good fight with me.  Together, we will continue to kick scleroderma and sarcoidosis’ asses and be around to see their names taken and followed by: Cured.

Love,

Karen

 

 

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

 

 

 

 

The Purpose-Free Driven Day

This morning, I felt unusually fatigued.  I had no energy.  My mind said go, my body said no.  So, I pondered the cause of today’s  fatigue with some questions.

Lounging is not a crime!

Were my lungs exchanging oxygen properly?  I breathe easier after taking viagra: did I take it? Then there’s  Pulmonary Fibrosis because of scleroderma and/or sarcoidosis: because really, who the hell can even tell the difference between the symptoms?  Okay, I  know it can be done if  I gave myself a pulmonary functions test every morning; but I don’t have that kind of time; there is no such thing as a live in respiratory therapist and if there is, I never want to know.  Was my Pulmonary Fibrosis getting worse?  Then I remembered I was breathing excellent yesterday, so that wasn’t it.

Maybe it was a football hangover from the Packer’s game last night.    I’m no expert, but that was clearly an interception.  That was a “hug” not a touchdown!  I was glad my son was not present so he didn’t witness my lack of creativity as I relentlessly hurled foul language at my unsuspecting and innocent TV machine.   I thought about it some more, and realized  that was a reach as a reason for my fatigue.  The big picture is that  it’s just a game.  And although the horrible call effected the outcome of the game and placed my beloved Packers in second to last place in their division, it did not warrant the kind of anxiety that would make me feel so exhausted, so I moved onto the next scenario.

Yesterday was port-o-cath flush day.  Between infusions, I have to drive 46 miles, one way, to get my port flushed to avoid  clotting.  Let’s call it Port Maintenance.  I was exhausted after I got home and even took a short nap after the drive.  Heparin is injected into my port at the end of my flush, so I wondered: Could that small dose of heparin make me tired this morning?  No.  It was inconsistent with past flushes.  The low dose of heparin does not effect me in that way, why would it start now?

Then, I did something.  Something I had done before, but changed my view about doing it.  Isn’t reality about how we view things anyway?  Sure grass is green, but what if I was color blind?  The grass would still be grass, the color green would just look different to me because it would only pick up the hues my cones could pick up, right?  What is this “something” I tried?  It’s called rest.

Yes, I have rested before: usually because of something going on with the progression of scleroderma or sarcoidosis; some kind of weird infection with a MRSA kick; a flare of some kind; or an injury on the verge of infection.  After almost twenty years since my first diagnosis, the possibilities are limitless.  But what if; and I mean a big IF here, what if I just took the day off?  What if I just rested on the couch in front of the TV?  No computer, no phone within reach and most of all no guilt: just a purpose-free day.

Why not?  Why not have a purpose-free day?  What’s with all this pressure to be purpose driven?  Everyone’s life has a purpose whether we are driven by it or not.  So, I removed the purpose from my day and more important, I removed the guilt.  What is with me and guilt?   Why not live a day without it?    When ever I do rest, I give myself guilt.  Of course, I must blame my Catholic upbringing  for the gift of guilt, but honestly; it’s time to let that guilt go, stop blaming a faith and just go about my day: purpose-free.  My guilt is something that I put upon myself.  I need to stop blaming all of Catholicism because blaming takes work and work requires a purpose and the goal here is to be purpose-free.

What could possibly go wrong?  There are no lives on the line.  For Christ’s sake, I’m a Buddhist  and it was time for me to capitalize on the idea there is  “no known Tibetan word for guilt” (The Art of Happiness).  Okay, so I identify more with Zen Buddhism, but let’s not overcomplicate things.  Let’s leave the overcomplicating to that narrative voice in my head.(Please and thank you!)

So here I am at the end of my purpose-free day.  I have to admit, it was a great day.  I took a nap on the recliner.  I took a nao on the couch and even watched Caddyshack.  My purpose-free driven day was a success.   After this post,  I’m ending my day with a little meditation; a shower would probably be a good idea, and I will read a book unit I fall asleep.

Funny how I managed to have a successful purpose-free day, yet found motivation to write a post.  I’m not writing this post out of guilt.  I’m writing this simply for fun. The fact I have scleroderma and  sarcoidosis and pulmonary fibrosis is not fun.  They are just a part of me.  I am not them.  They do not define my purpose or need to create.  It feels good to express myself.  I use my experience with Sarcoidosis, Scleroderma, pulmonary fibrosis, Raynaud’s and anything else the world throws at me the way an artists uses colors in a painting.   I suppose that’s why expression is referred to as art.  I’m not saying my posts are a work of art, but I am making something with my words.  Writing is my way of finger painting.  At times, it’s messy but  it’s evidence of my existence in this plane.  Dare I say my “Special Purpose”?  Na, too easy.  I’m just going to enjoy it.   I had a day with no guilt and, I feel good.  My little something for the effort: “So, I got that goin’ for me:  Which is nice.” 

 

A Tremor In The Force

On August 7, 2012, there was a great tremor in the force and we lost Lexie,  aka @OneBloggerGirl, a fellow scleroderma patient.  She was 28 as of her blog info. I, like many of my friends on Twitter, only new her online.  I really have no words right now except that my thoughts and wishes for strength are with her friends and family.

Although we never met in person, I feel blessed to have known Lexie in this life and I know I will see her again in the next.  She lost her battle with Scleroderma at age 28.  Take a knee, say a prayer, send a wish to those she loved and honor her today with a moment to remember something she said to you and how she made you smile.  Visit her blog and read about her journey.  It was short, but her journey was one that made a difference in this life to me and so many.  My experience knowing her will not be something I will be letting let go.

Thank you Lexie.  It has been an honor.