Intentions and Purpose

Last time I shared, my post was a brutally  honest.  I was in a true mindfulness moment.  I knew I had to start speaking in a kind voice to myself – “allow yourself to respectfully mourn the things in your past.  The ones you miss terribly.  IT. IS. OK and normal.  But you can’t wallow in it. You get 1- 2 days. 3 tops!”. 

Then today, this happened.

 I had a surgical procedure scheduled at the surgical center of south jersey. I’m pretty much a celebrity there because I have out-patient procedures there all the time. So at minimum, I’m a frequent visitor. Like if it was subway my card would be punched and I’d be getting free subs monthly. (I hate subway by the way-just an analogy). It also doesn’t hurt my populatity that I’m one of the rarest cases they’ll ever see. I’m like a celebrity amongst the sea of rare disease ridden, sick people who are now my waiting room peers. 

I digress. I had a new (to me) nurse in pre-op today. She was great like all the others. Also had a few familiar faces pop in while all the usual pre-op things were being done. An anesthesiologist who popped in and asked about Phil and he specifically asked me how the MS was treating me (Yup I have that too). Then another nurse who did my pre-op back in November popped in to say hi. A super nice blond woman. She stopped in to tell a story. The story was about the nurse who was caring for me today. She took one look at my chart before I arrived and immediately asked for additional help and feared she may not be up to the challenge. The more familiar nurse took a look at my file and said to her- “Oh no….” she smiled. “This is Tina. I know her chart looks bad, but you are going to love this girl. She has her shit together and will explain anything you need to know- even if you forget to ask the right questions.”  Putting the less familiar nurse immediately at ease. So nice for her to stop in and relay the story. 

Then after 45 minutes with this new nurse and us learning about each other, turns out she lives 5 min from me in Marlton. She in Kings Grant and me in Brush Hollow. 

She stopped what she was doing with my IV. The entire time we were chatting before we were simultaneously getting things done. She totally stopped sat in the edge of my bed and asked me if I remembered a nurse named Jen. I thought for a minute and the name wasn’t ringing any bells and I’ve been there so many times and met so many awesome people…. I must have looked like I was trying hard to place her because she expanded her statement to say -” you met Jen here. She was one of your your intake nurses. She was the one who was newly diagnosed with MS…?” she said, almost in question form. And I replied “oh yes I do remember her; is she here?” My nurse explained that she no longer works there but that she and Jen went to lunch about a month ago and Jen went out of her way to tell her if she ever got me as a patient to please tell me how much I influenced her. Jen tells her: “I left my conversation with her feeling so incredibly motivated and inspired and not so scared anymore. I left feeling like I was on a mission. A mission for my life.  Tina had such a huge impact on my world even in that short 45-60 min. Please. please! let her know that!  Tell her how much I’ve thought about the things she said and how truly appreciative and impacted I am by her words. ”

My mind was immediately blown, but quickly brought back to focusing on my intentions and my purpose. I needed to be reminded of them both, and God reminded me through this 3rd party person at the very time That I needed it most.  

I mean, who remembers you as a passing patient so much that they tell a former co-worker something so gracious and uplifting  about you and goes so far out of their way to make sure you get the message, even when they are no longer working there?  Especially when you think your just one of thousand patients they see every month. But that day, something I did, or said, really helped and motivated someone when they needed it most. When they were newly diagnosed with MS. 

All the glory goes to God. He put me there for Jen months ago and then he placed this new nurse there to act as a conduit for Jen, to reciprocate now,  at the exact time I needed it most. 

God is so good and we need to have faith in our path. I’m re-focused on my mission and not sorry that I had to take a few days to get here. 

Thank you God for the reminder! And may God bless Jen!  Both for what she is going through and also for the ray of sunshine she has been in this one small persons life at a time I needed it. I was listening God. 

Things I miss

It may just be that it’s January and cold and the most depressing month of the year, but I am finding myself feeling a big sense of loss.  I am normally fairly optimistic, some say incurably so.

I miss my old normal.  I miss going to kickboxing class and leaving it all on the mat.  I miss snowboarding and playing in the snow.  I miss how sore I’d be after a hard day of riding.  I miss my bike.  I miss my friends.   I miss working.  I miss having a set routine.  I miss having a conversation that doesn’t involve my health or symptom management.  I miss having house parties all the time.  I miss the excitement of looking forward to something.  I miss being able to fly or to even go to a public place without knowing I will get terribly sick.  I miss my old body.  I miss feeling pretty and feeling sexy for my husband.  I miss being a positive example for my children.  I miss putting on a pair of kicks and going for a run.  I miss staying awake after 8 pm.  I miss energy.  I miss my old life.

Signed- the “almost always” incurable optimist.

3 Hour Challenge: What Are You Complaining About?


Ever noticed that most conversations seem to be an exchange of mutual complaints?

Let me start with a question.  How many of you out there do not have a toothache today?  Wait…no one?  Isn’t that GREAT!  So……how many people are celebrating “not having a toothache” today?

When you have a toothache all you can think about is getting rid of the toothache.  When you don’t have a toothache, and things are going fine, you don’t actually take that in and let yourself celebrate what you already have…even the little things.

Lets do a quick exercise.  We will call it the “what’s NOT wrong in your life right now” meditation.  Everyone stop and think right now of 3 things that are not wrong in your life (even better, write them down).

Now, take the time to notice what it feels like to focus on what isn’t wrong.

Don’t feel bad; our brains are prewired to focus on what’s wrong.  We biologically adapted from our ancestors who had to focus on what is wrong because they were constantly looking out for wooly mammoths, saber tooth tigers and so many other dangers.

Neuropsychiatrists like to say our brains are wired like this: “velcro for whats wrong, and teflon for what’s right. ”

So this won’t come naturally.  It is something we need to consciously focus on everyday.  Appreciate that it’s another day above ground; we are alive!  Unless we make this a daily effort, we’ll get to the end of our lives feeling like we haven’t lived because we haven’t truly shown up here, for today.

Having a conversation that is a mutual exchange of complaints is plain and simple focusing on what’s wrong.  Plus, when you complain your basically saying “I don’t like what’s happening now, I want something different to be happening.”

Here’s the challenge:  Pick one day, and try to spend just 3 hours without complaining.  Not about the weather, your boss, your weight, the traffic, your in-laws…etc.,.  See what will happen for a couple of hours when you don’t complain to your co-workers, friends or family.  I’m trying it too!  Let me know how you do!








THIS SCARF: Yesterday Phil and I were waiting for the ever so slow and ever so rude Econo parking shuttle at PHI. We were waiting for over 20 minutes outside. I was in a wheelchair because I just had a botched Bone Marrow Biopsy and could barely walk. The bus came by, and stopped but only opened the rear doors. Phil banged not the front door, and said “Is this the handicapped entrance?…I notice there is a hydroloc lift here”. The woman driver wouldn’t even look at him and quickly thumbed him to the back doors and yelled all full. She wouldn’t even open the doors to speak to Phil. There were many people waiting for this shuttle. We were in terminal E because we flew Southwest. Last stop to pick people up and chances are the bus was already full. When the woman driver saw I was in a wheelchair she did stop open the door and say “there’s another bus 2 minutes behind me.”
She lied (right to our face). It was again 20+ minutes. Neither one of us brought jackets because the weather in Denver was supposed to be nice. I was shaking I was so cold.
Then this woman who was also waiting for the bus and had watched everything go down came over and wrapped me in this scarf. She said “It’s new, and I can’t stand seeing you so cold”. I was so thankful and finally stopped shaking (which hurt terribly). When the next bus came Phil wheeled me right up to it. (Actually he wheeled me off a curb and almost dumped me out of the chair, but we’ll forgive him as a new driver) Again, It was full; but Phil said “make room guys we’re getting on this bus”. I could barely walk, let alone go up steps, but strangers started helping me putting out their hands so I could use them to gingerly get to a seat that someone so kindly gave up for me. While Phil was headed back for the bags I asked him to give the woman back her scarf and to thank her. He was gone for a while and I was worried the bus would pull off without him. Finally he emerged with the bags AND the scarf. He told me the woman said “Please keep it. Its for her….I knew there was a reason I bought 2.” She also met Phil 1/2 way with our bags trying to help us get on the bus. The very same bus she was patiently waiting for and was most likely going to miss because she was helping us.
As God would have it, somehow she was able to get on the front of the bus. Not only that, but the tone of the bus had changed. Everyone started helping each other. Men giving up their seats for women, helping mom’s and kids off the bus at their stop, the love just enveloped this bus.
My point is this: You can choose what to focus on. The rude bus driver, the poor processes in PHI, the rude passengers…..But the nice and the kind always win and FAR outweigh the negatives, frustrations and disappointments.
To the woman who gave me this scarf and to everyone who has done something like that THANK YOU! You make the world a much greater place.
With love, TB

 — in Marlton, New Jersey.


Tina Brown: My story- Churg-Strauss/EGPA


    A lil’ about me… I’m 43, female, and a former Marketing and Customer Experience Executive.   A year ago, I was diagnosed with Churg-Strauss Syndrome (CSS)/EGPA, Vasculitis.   I am followed by both Penn Medicine and National Jewish Health on line and in person. This is my story – highlighting both my personal and medical journey.  Welcome to it and thanks for visiting. My “Big Girl photo” TB headshot At the time of publication (May 2014) I am 43 and a mom to 4 spectacular kids Teresa, Kimberly, Dominic, and Elijah.  I am married to Phil DeMarco, worlds best husband and stupendous drummer.  I’ve spent the last 20+ years working in Technology, Marketing, and Experience Design holding various leadership positions within each area.  I began and continued the first 10 years of my career with AT&T/Lucent Technologies/Avaya and followed that track for about 10 years and then spent the last 10 years…

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