Motivation

Part 3: What is Cardiac Sarcoidosis?

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When they told me the clinical diagnosis was Cardiac Sarcoidosis – I had no idea what it was and of course had to google it! (and I kept mis-pronouncing it – LOL). Searching on the internet can be great but as you know take you down a dangerous rabbit hole (and trust me – I did go there)!

Here is what I found initially:

  • Sarcoidosis attacks the lungs (primarily), eyes, skin, and heart (and can attack other organs too)
  • About 50% for cardiac sarcoid diagnosis are from people with Japanese descent.
  • Did you know Bernie Mac had Pulmonary Sarcoidosis – The Bernie Mac Foundation supports Sarcoidosis patients?
  • It is considered an autoimmune disease – and ideally having a care team that covers many disciplines is super important.
  • It is considered a ‘snowflake’ disease – it means it represents differently in each individual. And it is hard to diagnosis – many go years without a diagnosis (I’m keeping my fingers crossed we caught mine early)!

A Simplified Explanation

As I mentioned above, Sarcoidosis is an autoimmune condition (and I wasn’t one of the Gen Xer’s who ate a lot of Flintsone vitamins!) that causes your body to form inflammatory cells called granulomas. They can show up anywhere – primarily lungs, eyes, skin, and heart – even lymph nodes and other organs. When it is in the heart – it is called Cardiac Sarcoidosis!

My immune system has gone a bit rogue and allowed the granulomas to grow on my heart walls where the electrical system operates. Remember in health class when you studied the heart – you have the Atrium (2 top chambers of the heart) and the Ventricles (the 2 bottom chambers of the heart)? The walls separating the chambers is where the electrical system of your heart functions telling you heart to pump and send blood to your brain and other organs. The granulomas are on my heart walls and a tiny bit in the lower right ventricle (and if you are going to have in your ventricle – mine is in the better option!) which resulted in Heart Block (or conduction block – which means the electrical signals are slow or stop – mine were slow – heart rate at times as low as 40 beats per minute and even lower – mine NEVER stopped!). Cardiac Sarcoidosis can cause Irregular Heart Rhythms (arrhythmias), Heart failure symptoms (fatigue, shortness of breath, and swelling – the week before I had fatigue and shortness of breath – but not at the same time – and I chalked it up to online meeting fatigue and my asthma while walking), and lastly Sudden Cardiac Arrest (really glad I didn’t know this until later in my research – https://www.heart.org/en/health-topics/cardiac-arrest)!

Here is the tricky part – it doesn’t always announce itself with extreme symptoms – see the ones I had a few days before – just not feeling right, shortness of breath, and fatigue – which I kind of brushed off. I may have even had a head rush or two – all on different days. I felt fine the day I left to travel to North Carolina – I chalked a lot of it up to the heat we were experiencing in NJ.

Why It’s Often Misunderstood or Missed?

Cardiac Sarcoidosis is also called a ‘zebra diagnosis‘ – it’s rare and often hides behind more common explanations. Symptoms can mimic anxiety, chronic fatigue, or general heart issues. Standard tests don’t catch it and specific imaging (PETScan or Cardiac MRI), biopsies (and in the heart no guarantee biopsies confirm as no control on securing the inflamed granuloma), and a team who knows what to look for to diagnose. Again, so happy I ended up at DUKE – right place – right time for sure! Mine was and still is a clinical diagnosis – the biopsy I had didn’t confirm granulomas (which is random based on samples from the heart – not as targeted as other biopsies). Down the road, I’ll have a PETScan to see how everything is progressing (I’m on steroids right now so need to taper to a lower level for a PETScan to show up correctly).

Why I’m Sharing?

As I mentioned before, I’m sharing my journey as I want others to feel empowered to ask questions, push for testing, and listen to that voice in your head – “this isn’t normal for me.” I’m super lucky that DUKE pushed even more than I did to get an answer! Keep showing up and speaking up! Thank you for reading and walking with me on this journey!

“Love yourself first, and everything else falls into line.” – Lucille Ball

Inspired, Motivated, Proud & Tears

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Friday night was an amazing accomplishment for me personally – I WON the 6 week Fall 2013 Transformation (to transform is to change (something) completely and usually in a good way) as a Body Project Fitness HardBody!  So what does that mean?  I got this awesome golden dumbbell, certificate, beautiful flowers and a year of workouts!  How awesome is that?  Pretty Awesome – but it is so much more – I don’t even know if I can do it justice in this blog (and my apologies if I seem to ramble – it is just so hard to get all of my thoughts together).

photo 1

This truly has been a journey for me.  I don’t know how many transformations I’ve participated in – little did I know then – I was just ‘participating’ – maybe even going through the motions sometimes.  I’ve worked out with many of the prior winners – and I was always in awe of hearing their stories – so inspirational.  I often wondered if I would ever get it?  And there was a part of me that thought I never would – it just wasn’t in my DNA.

In my last post, I talked about how I was MISSING my workouts – not skipping my workouts.  Little did I know that that was truly my AHA moment – and I almost missed it.

I went in on Friday morning for my measurements – I don’t recall the numbers but the biggest drop was in my hips with an overall decline in bodyfat – note – I didn’t lose any weight in 6 weeks (and there have been moments in the month where I’ve gained weight – amazes me how it fluctuates) (and you all know I’m a numbers person).  My trainer and coach asked me a question – how is this transformation different? – she always asks me these simple questions that catch me like a deer in headlights.   So we talked about how I was trying to find ways not to miss workouts when in the passed I found ways to miss workouts.  We talked about how my work travel exercise was different – I walked as much as possible (it helped I had my Jawbone working again).  She asked me what was a different – I know it is all about how I think about things – and the large muscle between my ears is so very powerful.  I think we forget or don’t realize just how powerful it can be.  I’ll be honest I walked out of there thinking I didn’t quite know the answer.   I thought about the question all day – it wasn’t until I got in the car that it hit me – missing the workouts also turns into that working out (whether it is going to BP, a spin class or getting out and walking) has become a part of my life – I don’t view it as a chore anymore or something I HAVE TO DO – it is something I WANT TO DO!  It has become a part of my LIFE.

Now this may not seem to be a big deal for you – it is for me – during the big reveal it became clear that everyone else noticed the change in me – probably even before I did.  One of the things that was mentioned that was totally me – I would come and go at BP – I joked later – We were on a break (reference to Friends 🙂 ).  There was also a reference to how much I focus on the numbers – they are still very important to me – but not the only thing – it is about how I feel too (and I’m feeling pretty good right now).

For those of you who know me personally – of course I shed some tears (I think I kept it together though) when the announcement was being read – I knew it was me when the comment came up about I would come and go (or something like that).  I had an opportunity to say a few words to everyone after my award – and I believe I touched on some of those items in this blog.  I’m so very proud of my accomplishment!  I’m still in shock that women came up to me after the award and told me – “I’m an inspiration” to them.

I’m so very lucky to be surrounded by strong and inspirational women – they’ve always been my biggest cheerleaders.  I moved to this part of NJ in 2005 – I didn’t know a single person in the area.  It would be very hard for me to leave this area not only because I love the proximity to the Jersey Shore, NYC and Philly – but also because I don’t know if I could survive with out BP and my BP girls – they are an amazing group of women!

I’m motivated as I continue this journey…

Pep Talks

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I found myself in the car driving to see my nutritionist this morning giving myself a pep talk. If you recall from my post on 8/10 – my goal for this appointment was .7 down.

The past 6 weeks have been a little challenging – limited work outs, an unusual amount of dessert eating (too many trips to a local cupcakery) and football season started.  As I’ve mentioned before I weigh myself every day (in the AM) to help keep myself accountable and I can tell you the last 6 weeks I wasn’t seeing much movement.  I started seeing some movement about a week or so ago (and in the right direction).  Now I reported last weekend that I was down but there was a part of me that was worried either my scale was off (it has happened before) or for some bizarre reason I had regressed in a week.

So back to the Pep Talk I gave myself on the ride over – “no matter what happens, keep a positive attitude”.  “You’ve come a long way.  If you gained weight – don’t get discouraged – you have all the right tools to get back on track”.  “If you lost weight – you are doing a great job – keep it up.” Of course, the latter conversation is a much easier one to have!

After my Pep Talk, I was ready – I went in with a great attitude (and checked out of the stress from the week to focus on me).  It was a really great appointment not just because of the results – which don’t worry, I’ll tell you.  But it was more about the discussion.  As you’ve noticed, I’m a numbers person, but I was given a little different perspective today.  While numbers are important – they aren’t the only thing – feeling better, looking better (hair, skin, etc), how you clothes fit, making sure you are living your life and not missing out are part of this journey.  I probably need to remind myself that every once in awhile (although I’ll always be a numbers person) – it was still important to hear.  And I don’t feel like I’m missing out on things – which is a good thing!

I’m please to announce I busted through that .7 lbs and dropped 2 lbs for a total of 25 lbs down since May 2012!  And even better – I’m pretty sure I haven’t seen this number in 3 years (and I’ve gone down a jean size – double bonus)!  I feel great and I’m so happy.  My journey is far from over, but I’m confident I’m going to continue to see success and have a feeling my five minute drive every 6 weeks will have a pep talk involved (even if I falter – I know I will be OK).

Have a great night!

Names I’ve been called lately – all in good fun!

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At work for the past year they launch a SprintGetFit challenge. It gets the competitive juices flowing plus it is great as we all become healthier. This time around, I’m the team captain. You can have a team of up to 11 people (we have 9) and they ask you to track weight, steps walked and minutes exercise – you have to compete in at least on category (and everything is private).  The program runs from May 14th – July 8th.

One part of the program allows everyone to issue daily challenges.  A challenge could be to walk or run for 30 minutes, yoga, drink 64 ozs of water, complete your favorite exercise and even record your results (and yes that is a challenge) (and there are prizes for this program).  I decided this time around, I would take this a lot more seriously – especially since I’m a team captain.  I’ve leveraged some of my boot camp experience to issue a little more challenging ‘challenges’.  Here is an example of one of them:  30 minutes of exercise, 10 push-ups, 10 sit-ups and 2 30 second planks.  Here are some of the comments from my team (and btw I love it):  ‘Taskmaster’, ‘Are you crazy?’, ‘Always up for a ‘D’ Challenge’, ‘I hate planks, but I will do them’, ‘Fun for all’.  At least they are reviewing the challenges right?  And even doing them.  It helps me hold myself accountable and provides additional motivation! (I shared the comments with my trainer and she loved it – she even volunteered to help me with challenges – some of my team reads this blog too – hmmmm – maybe I’ll take her up on her offer 🙂 )!

I’ve even put out some easier challenges as well – here was Friday’s:  Drink at least 64 ozs of water (not ice tea or crystal light – pure water) and 30 minutes of your favorite exercise.  Even got some people not in our group to accept the challenge.  I think the team was glad to see I went a little easy on Friday.

Then I posted Saturday’s challenge (which I didn’t get to until tonight):  Set the clock for 15 minutes and do the following (record your rounds):  5 bicep curls, 5 tricep kickbacks, 5 walking lunges (I had to do high knees), 10 Jumping Jacks (modified mine), 10 full sit-ups (with a weight) and 10 squats.  Rest/Hydrate as needed.  All exercises requiring weights I used 8 lbs weights – I just got 6 rounds in!  Whew – and worked up a great sweat!

Have a fantastic week!!

PS:  Hope you enjoy the two posts in 1 day!

Workout ‘High’

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Good Morning!  Happy Wednesday!! 🙂

Letter to my Monday morning self when I let the negative self talk get the better of me when I roll over and go back to sleep…getting up is half the battle and the workout ‘HIGH’ is so worth it!

Why did I write to my Monday morning self?  One of the challenges I persistently have is not being able to get up on Monday mornings to make my work-outs. This Monday was a perfect example. Now I did have a migraine when I went to bed (and the medicine I take gets rid of the migraine, but I don’t sleep well) Sunday night so that could’ve been the cause of the ‘I just don’t have it in me today’ thought. If this was the only Monday it happened I wouldn’t worry about it. However, it is a trend (that I don’t like)…this is one of the things I’m going to try to figure out.

Does anyone else have this challenge?  If so, what have you done to help yourself?  Would love your thoughts!

PS:  We did an obstacle course workout today…FUN!!

 

Motivation

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What do you do when you are lacking in motivation?

Last year, I wrote the following on an internal fitness blog.  I find that I go to it when I need motivation – to prove to myself that I can DO IT and that I OWN it!  Hope you enjoy it.  Please share what you do to help motivate yourself!

I am STRONG and PROUD! (From: 10/27/10)

The 6 week transformation was a re-start of boot camp for me. I took the summer off due to an injury. As I reflect on the last six weeks…there are things that have remained the same; but many things have changed.

 Things that are the same:

  • Great trainers–a special thanks to Lindsay, Jessyca and Carrie for pushing us each and every day!
  • Great fellow boot campers
  • Class is still @ 6 am (for me)

Things that have changed (in no particular order…and I’m sure I’ve forgotten some things):

  • My head is in the game (as I reflect on previous challenges / transformations at boot camp, I wonder if I was all in…I think not)
  • I’m accountable. I could make any excuse previously to roll back over and go back to sleep. I only missed two boot camps (I was out of town one day and had a migraine the other day). And I sent in my emails.
  • New workouts: I’ve pushed myself…mind muscle connection…I’m here for me and no one else!!
  • I used this forum to see that I’m not alone
  • I did a much better job with my food journal (although I have room for improvement)
  • I haven’t had fast food in 6 weeks
  • I’ve corrected people when they’ve said I’m on a diet
  • I’ve done the HIIT workouts on off days (although again an opportunity for improvement)
  • I’ve learned lots on how I shop and cook my food
    • Reduced diet soda intake
    • Cut back my sugar intake
    • And found new foods that I love
    • Did I mention I haven’t had fast food in 6 weeks? 🙂
    • And I haven’t felt deprived (I still enjoy a cocktail when out with friends) 🙂
  • I’ve lost 8 lbs (the most ever for me at bootcamp)
  • I’ve lost 6.5 inches and 1.2% bodyfat
  • I completed the 1000 challenge today with 600 reps a 36% improvement from September
  • And finally I’m ready to see what I can do in the next 6 weeks.

I’m feeling STRONG and PROUD!! I hope you are too!