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. 

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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!

 

 

 

 

 

The Blind Men and the Elephant

Recently I’ve been considering  the power of going back to the basics and allowing your body to heal itself – The basics:  Less coffee, alcohol, and processed foods, and more fruits, vegetables, water, and exercise. It is this unique approach that encourages me to address the root cause of a symptom rather than an isolated symptom.  Here’s a good example of Symptom Management: Me “Hey doc, I sat on a tack.”  Doc gives you script for pain med rather than suggest you remove the tack.

We’ve all been there: “you have this disease, you take this pill”. I have been thinking a lot about the influence of a conventional healthcare system built on symptom management and I’ve made some major changes to managing my health because of it.

blind
By Pawyi Lee [Public domain], via Wikimedia Commons
The best way is for me to summarize using an old fable: “The Blind Men and the Elephant”.  Wikipedia summarizes it better than I can- *credit wiki:)
The story originated in the Indian subcontinent from where it has widely diffused. It is a story of a group of blind men (or men in the dark) who touch an elephant to learn what it is like. Each one feels a different part, but only one part, such as the side or the tusk. They then compare notes and learn that they are in complete disagreement.”  (One touches the ear and thinks it’s a rug, one touches the tail and thinks it’s a rope, etc…)
As a patient, this is what I often feel like at my doctor’s visits.  I see over 15 different doctors with multiple specialties in multiple states and multiple parts of the country.  I’m comfortable with the term ” bi-coastal” patient…lol.
Something Ive been doing for a long time is crafting a “patient agenda” prior to any new or what I feel is an extra important, doctor appointment.  Sometimes it’s just on a notepad on my phone, but other times I print out copies for both the doc and myself.   It helps to make sure I don’t forget anything important, and make sure I’m clearly stating what I’m looking to achieve out of our mutually valuable time.  Ive started doing a new thing.  I put the summary of the “Blind Man and the Elephant” fable as  “goal 1:”.  I ask them to read -fable only- to themselves before we begin. It’s only a few sentences, but it helps to set the tone; to remind the doctors to see me a a whole and not only in their one area of expertise.  If they can’t see the elephant how can they appropriately treat me?
Now that i’ve just likened myself to an elephant, I’ll be signing off.
I’m attaching a patient agenda I just used for a visit to National Jewish Health in Colorado.  It’s nothing fancy, I seriously typed it on the plane ride there.  I removed some things and used general symptoms for my privacy.
IMG_7689

*Sample of my last patient agenda click the link above to view the full document.

So when you start to feel like being a patient has turned into your full time job,  It’s time to rethink how your managing your health.  Or, are you managing your health at all?  Are you being influenced by a conventional healthcare system built on symptom management? Your health deserves to be managed and no one’s going to knock on your door to do it.
Spend 10-15 minutes before big appointments thinking about and documenting these few things:
1) Set goals.   Know what you want to get out of the meeting and more so, make sure you communicate it with your doctor.
3) Write down any notes you want to remember as “mentions” (i.e., changes in family history)
4) Finally , I always like to summarize both symptoms and their respective category so that the specialist dosen’t only see the symptoms of their specialty.

THIS SCARF:

THIS SCARF

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.

 Wheelchair

Tina Brown: My story- Churg-Strauss/EGPA

sunnytb

    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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The Waiting Game

Anyone who has filed for Long Term Disability (LTD) can empathize with the title of this post. If you read my first Blog post, you know my background w/diagnoses of Churg-Strauss and a few other autoimmune diseases.  If you didn’t get a chance to peruse the story, you can find it here: http://wp.me/p26GBe-3. It’s a quick read about Churg-Strauss and a few other auto-immune diagnoses and the specifics of their presentation with me.

The Decision: Filing for Disability:  After trying to work through my illness and work-up (not knowing what was wrong and thinking this was a temporary situation) for over a year; my medical condition, side effects from treatment and symptoms worsened.  The exhaustion was like no other.  The only thing I can relate the feeling to is this:  Imagine you have the worst flu of your life, all the time.  You’re constantly nauseous, your body hurts so bad and you wish you could relieve the pain, but you can’t.  You can’t make it up the steps without taking a break for a breather at the top.  And the only thing that can make you feel even a little bit better, are a handful of drugs that you would never take, but now you have to. The drugs make you feel non-present, moody and generally sleepier than you already are.  Hashtag #nofun.

I could no longer hold a full time job at the Vice President level, as a Marketing and Customer Experience Executive and manage, even the basics of, my illness and be a mom of 4 and wife.  My illness itself was a full time job, and that was just to keep me breathing and stable.  Not even attaining anything close to remission. In December I filed for both short term, and long term disability.  This process in itself was not the easiest, but I wasn’t expecting it to be.  I knew I would need to have strong follow through with all 3: NJ state disability, Social Security Administration and with Prudential who was my private LTD provider.  I have been a prudential LTD customer, paying into the system, but never filing a claim, for for almost 10 years. I want to note for the record (‘Your Honor’ seems appropriate here, but thinking better of it) that besides giving birth, I have never been on any form of disability or assistance. Filing for disability itself was a very time consuming process.  Simply filling out all the forms and submitting them took days.  I was organized with a trifold file case that had all of the pert’s (that’s what we in law enforcement refer to as “pertinent’s”- Just kidding, I’m not in law enforcement; of any kind-).  Denied: Screenshot 2014-07-03 14.18.22 I was initially denied by Social Security.  They basically said even though I can’t do my specific job and I do have all these disabilities, that I can still work doing something (I’m picturing either putting wigits in a box or being a professional chicken plucker.)  I appealed, and that decision is currently under review by judicator 31.  That’s all I know.  I have paid into Social Security Disability since I was 16 years old and never filed any claim with them. Prudential: What I bought: The pitch              Untitled-2Untitled-1      What a journey.  I’m not sure where to start with this one.  I guess I will start with the private investigators they hired to follow me 4 months into the claim.  note* There is a 6 month mandatory elimination (or waiting) period.  Thus, I filed for LTD at the same time I filed for Short Term Disability to ensure that when that 6 month wait was behind me that I would have a decision well in advance of the waiting period.  Needless to say, I am receiving no benefits, the claim has been “In process” since early December and still is today the 3rd of July 2014, almost 7 months later. You can understand, at this point of the filing process, I was not entertaining even the possibility of being followed by either Social Security or my private LTD insurer.  The first time I knew something was up was the day I was turning onto my road and a white car that had just passed me in the opposite direction did an out of no-where, “Dukes of Hazzard” type, illegal u turn.  The tires screeched and the car spun out a bit.  They quickly were on my tail.  They slowed to a crawl as I approached my driveway.  I knew something was not right with this situation.  I was on IV antibiotics at that time, so I had to get my IV pole and connected bag/tubing for my infusion out of the car in my driveway- no small feat, and worse yet, there is no way to look pretty or sexy while doing this.  The car slowed down at the bottom of my driveway and they stopped in front of my house (in retrospect to get a good picture of me and verify I was the person I said I was).  He rolled down his window and said “I’m sorry If I frightened you”.  What I wanted to say: “Ummmmmm….yeah buddy whatever.  That’s not TOO creepy.  Tell your story walking.!”  What I actually said: “No problem”.  BUT I said it with a look that could have quickly killed your average person.  I’m unsure, to this day, how he survived my death stare.

My second encounter with their investigators was while driving my mother-in-law home.  She comes and stays with us for 4-5 days at a time and helps with laundry, dishes, helping with food shopping and anything I need (yes I am the luckiest daughter-in-law EVER!)  She no longer drives at 76.  I noticed a car that was following us closely on rt 70.  Their front window was tinted and you could not see inside.  They had no front license plate.  I thought it weird, but nothing beyond that.  Then they passed me to the right and I noticed all the windows were tinted.   They weirdly were keeping pace  with me on my right.  Then they sped in front of me and cut back in front of my car.  Their back license plate had a gray sort of covering on it (like s stocking?), so you could see the plate was under there somewhere, but you couldn’t make out the numbers/letters.  I mentioned it to my mother-in-law who also thought it strange.  I happened to be doing my IV infusion while driving this time as well.  I was up to 3 hr infusions 2x per day.  I dropped her at her place and started driving home when the same blacked out car now appeared again in my rearview window.   I had to pull some dukes of hazzard moves myself.  This is me on top of the car in case you’re unsure of what I look like. Me...lol Because of my sweet moves, I evaded and eventually lost them.  It bothered me the whole way home.  I couldn’t remember a time of being more freaked out….that was until I got home and saw the SAME blacked out car sitting at the corner of my street.  They had beat me home!  I called the police.  They gave me a wink wink and cryptically told me what they were doing there.  The police officer also said not to be afraid as they were not there to do any harm to me and their credentials checked out.  I had this conversation with the police officer on my step tethered to my IV pole and picc line.  This is a picture of the car that followed me: photo-9 The Insurance Company isn’t on My Side?  I filed a complaint with Prudential about the conduct of the investigators and took to social media with my frustration and the realization that…wait for it…………….the insurance company was not on my side!  I say that completely genuinely.  I figured if I paid into private disability and something horrible happens, like being diagnosed with a chronic and life threatening condition, that I would be covered.  In retrospect, I fear I would have been better putting my money under my mattress. At this point prudential was being more communicative with me.  It was a relief to be talking to a real person.   They told me what they were waiting on and I did my best to hound doctors and hospitals for records that would support my claim.  I also had my key doctors write to Prudential and Social Security on my behalf.  I had many different doctors write on my behalf of me and their own specialty as to why I needed to be on long term and permanent disability.  These were no “hack” doctors, all national experts in their fields.  They consisted of 2 Rheumatologists- One in Denver at NJH and one at Penn.  Also from Penn: my Infectious Disease doc, Pulmonary doc who specializes in interstitial lung disease, my ENT, and Rheum.  From Rutgers, my Neurologist.  I did EVERYTHING I could to get them information.  The medical records department is not the easiest to navigate- anywhere.  I was a frequent user of their e-mail option for sending any new medical documents, visit notes, and sending email letters through the same process regarding how discouraging this process with them has been.

The Silver Lining  Had I never been diagnosed with this disease and been forced to take time to focus on recovery, I would have never realized the following:

  • Having time to be a mom and care for your family is awesome.  I never knew how much I was missing out on, even though I was always involved coaching their sports teams and the hard core weekend mom, I wasn’t home as much.  I’m thankful for this time with each of them.
  • I wasted a lot of money before…..Like LOTS!  I ALWAYS justified it by filing it under convenience because I was “Sooooo busy”.  I had to have someone do my nails because I didn’t have time.  I had to pay someone to clean my house because I didn’t have time.  I convinced myself that i needed the best work cloths because that was one of the many ingredients to “success”.
  • I found myself being very unappreciative or maybe critical is a better word, of our home.  Always comparing to other people in my world who have the McMansions.  My needs are now clear.  And they are simple.  I need my family.  We need shelter and food.  That’s about it.  We can have fun in a card-board box (although I don’t really want to be forced to try it).  I love my home.  I sometimes wish I could move it to Colorado, but It’s beautiful and we take pride in it and our yard.  My yard is a sanctuary because my husband worked so hard to make it that way for me.

I never would have come to any of these realizations had something like this illness not happened.  I would have continued on the hamster wheel, oblivious to all I was missing and guilty of enabling bad financial decisions out of convenience.  My eyes and focus were on things they shouldn’t have been.   No regrets, it’s all part of a journey. The only parts that I wish I could take away are when my kids tell me they don’t want to travel or even go away for a week because they are afraid of something will happen to me.  I want them to not be worried or afraid of anything.  Or, when I know my husband hurts and is afraid of being widowed but would never say those words to me because he doesn’t want to see me cry.  Oh, and not being able to use my body athletically, in the way I always have, is a bit difficult to get over. In the end At this point, I am well beyond the 6 month mandatory waiting period and there has been no decision made.  Being a Lawyer (lol….nope that’s not true either) I decided to send Prudential closing arguments.  Basically a summary of my disease (I’m a doctor now), my multiple diagnoses and their unique presentation in my case.  I outlined my symptoms, the side effects of the treatments, and why I could no longer perform the responsibilities of my current occupation. This is what I refer to as “The Waiting Game”.  It’s a time filled with uncertainty, filled with emotional highs and lows.  It’s filled with amazing self realizations, and no matter who you are, it inherently changes your priorities.   Thank you for taking the time to read my story.  Please feel free to repost. Follow me on twitter @tinabrown