Scleroderma, Pulmonary Fibrosis, Sarcoidosis; Need Box Wine.

two kids buried under paper work and a lap top with the note: help me!

Has anyone seen the kids?

Well, because of my meds, obviously box wine is out of the question: But a girl can dream. (Sigh).  I set out to make this post about why a patient like me with scleroderma, Sarcoidosis and pulmonary fibrosis would attend a health and fitness convention, then I realized the answer was obvious: Health and fitness make my quality of life better.  So, if I stopped here, that would be one short post, so I will tell you more.

On September first, I made a commitment to meditate every day for 40 days.  If I skip a day; no matter what, I must start over at day one.  So, here it is October first and I’m on day one- again.  There is hope I will make it to day two tomorrow, but it’s still early, but  I wouldn’t put money on it today.  Tomorrow, that;s another story.

Meditation and Deep Breathing Helps: But you have to do them in order for it to be of benefit.
The great thing about the meditation I am (attempting) to practice , is that it involves deep breathing based on Kundalini Yoga practice.  Back when when I did yoga consistently, the type of yoga did not matter; be it Kundalini, Anusara, Vinyasa or yoga on the fly: I was breathing and moving better.  Scleroderma, Sarcoidosis and the effects of Pulmonary Fibrosis were not dominating my life.  But now, as I continue to slack in my practice, I feel the effects of fatigue.  If feels like my lungs are not exchanging oxygen as effectively as they could.  My last Pulmonary Functions test showed that my oxygen exchange improved with the use of albuterol.  Now, albuterol and I have a rocky history and although it offers immediate improved air exchange, the side effects cause other problems that keep me from breathing properly outside of a clinical setting.  The only way I can describe what albuterol does to me is this:  It’s like doing cocaine without the euphoria. It makes me climb the walls; resulting in anxiety, panic attacks, swollen thoracic lymph nodes and the problems those results cause.  This actually defeats the purpose of opening airways because those side effects cause me to get LESS oxygen into my lungs.

No Snakes On A Plane Here
By the way, I tried to find a link about pulmonary fibrosis and albuterol that would not scare the begesus out of my family.  Here is my statement to calm everyone down:  My condition is stable. Pulmonary Fibrosis is in the lower lobe of my left lung and there is a little in my right.  It may be right or left- I always get it confused, but you get the point.  I have fibrosis and restricted alveoli  due to inflammation.  My lungs are at 85%, which is not bad for someone with Pulmonary Fibrosis, 20 years of Scleroderma and let’s not forget about the Sarcoidosis.  So, please relax.  There are no snakes on this Monday to Friday plane. (Yes, there is a clean version) I’m stable, mobile and have lots of life left in me.  Okay, so now that we have that out of the way:  Because the Albuterol improved my lung function, (numbers) my Rheumatologist at UCLA recommended we try it because if it helps, it’s worth a try.

Albuterol is not my friend.  It helps me breathe better, but is counter productive because of the stimulant effect it has on my system.  I have a history of anxiety.  I used to get panic attacks so bad, the granulomas (sarcoidosis) in the lymph nodes in my chest would enlarge, resulting in restricted movement of my lungs because they could not expand.  It would happen without anxiety, but because of the right medication, my condition has stabilized. Like many autoimmune or chronic conditions, stress can cause a flare.  Sure, albuteral would improve my numbers, which would be helpful if I the side effects defeated the purpose of even taking it because of the anxiety from the stimulant effect it has on me.  Our solution to this quandary? Achieve our objective of open airways with the newer, more expensive treatment, titotropium bromide inhalation powder (brand name Spiriva).

For those of you who are not aware of the excellent healthcare equivalent to that of Dick Cheney’s: I am a 100% service connected veteran with Medicare.  That means my specialists at the Veteran’s Hospital,  consult with my specialists at UCLA because the specialists at the VA have no idea what to do with me.  They are great doctors, because if they don’t know the answer, they will find a way with a referral to a specialist outside the VA.  (Really, can you count on more than one finger how many  patients you know with scleroderma, sarcoidosis, pulmonary fibrosis who test positive for rheumatoid arthritis AND have a stable condition after 20 years (with meds)?- Me neither.)

Veteran’s can have specialists consult with specialists outside the VA Healthcare System, and because I qualify for medicare, my doctor’s visits to UCLA are 80% covered by Medicare.  Because I have no other insurance,  medicare approves many things without having to fail three times befroe getting the right treatment that’s more expensive.  Same with the VA.  The thing is, as our own advocates, we need to communicate with our doctors, encourage and by all means ask to go outside the formulary when it is necessary. (Don’t be willy-nilly about it.)  Good doctors will advocate on your behalf  to go outside the formulary  Restrictions, of they have the evidence that skipping formulary treatment  will avoid unnecessary complications.   This is where being your own best advocate, well read and have a great communication with your own medical team is priceless.  (Nerds. I guess I will have to write how to get there with as few breakdowns as possible.  -Okay, coming soon- I promise!)

Okay, so what started as an announcement, has turned into an update of my meds, ways to go outside the formulary and being your own best advocate.  I hope my update- okay let’s be honest, my rant has been helpful and maybe even sparked a few questions.  I hope you will ask questions, or leave comments at the end of this post.  I am most inspired to write by anyone with questions or comments.

Now, back to my original goal of this post; my announcement.  I will be attending the Body 2.0 conference in San Francisco October 7th as a Health Activist and contributor to WEGO Health.  Body 2.0 is a health and fitness expo for anyone interested in maintaining or  improving health and fitness.  So there you go.  We tool a long car trip to get here, but that’s what’s on the agenda this week and next.  preparation, travel, relaxation then health activism.  Stay tuned to keep up to date on what’s new in fitness & health, WEGO Health and how what a patient can benefit from a health and fitness expo.  We may be fighting for our lives, but learning what we can do to maintain health between battles or during, can benefit you and someone like me with multiple diagnoses like oh, I don’t know; scleroderma, sarcoidosis, pulmonary fibrosis, contracted hands, limited range of motion… Do I really need to keep going.  Just stay tuned, and if interested, visit WEGO Health if you would like to attend Body 2.0, test some products or learn from health activists.

To keep with the theme of fitness for Body 2.0, There’s a new version of Ice, Ice Baby for Zumba.
I thought you might enjoy Jim Carrey’s version from In Living Color 

 

One Comment

  1. Comment by Kathy:

    Yeah! Congrats!