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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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.

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

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 as the VP of Marketing, Communications and Customer Experience for a large logistics company headquartered in NJ. Here is the “not so big girl” me:

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As you can see, the world is my playground.  As a lifelong athlete,  I was still playing co-ed soccer and co-ed softball 2 years ago; plus. coaching my both Boys and Girls Soccer in-town sports.   I was captain of an MS 150 Bike team (that’s 150 miles) and mud run teams, and I would enter the craziest and hardest races I could find for the mere fun of it.  I was featured by Nike in their  “make yourself” campaign which you can check out here:  on.fb.me/H7ouh7  

My symptoms were numerous, but the progression was very gradual.   None of the symptoms on their own, meant anything, but together, after 20+ years, it meant being diagnosed with Churg-Strauss Syndrome (CSS) or Eosinophilic Granulomatosis with Polyangitis (EGPA). Regardless of the name you prefer- I have a few of my own- the disease reads the same. It is a multi-system autoimmune disease, meaning it affects many parts of the body.  It is a chronic condition which requires long term therapy.

My Symptoms: It started with just a few numb toes in my early 20’s and an annual winter-time dry cough that was hard to lose throughout the year.  The cough became more frequent and more severe.  In my mid 20’s I suddenly had to use an inhaler to workout and run races.   My lungs weren’t as efficient as they used to be.  I had never had asthma as a kid, but developed this wheezing and coughing sounding like bronchitis, which would appear and disappear a few times per year.  And sometimes, even  skip a year. A hive like rash around my ankles at the age of 20 and it never let up.  My PCP didn’t know what to make of it and called it a fixed allergic reaction. My Feet would go numb and change color.  Sometimes they would be numb yet burn at the same time; other times I would feel a strange sensation of something crawling on me.  I would also get a general tingling all over my body that would last seconds or minutes upwards of 20x per day.  Looks pretty, doesn’t it? raynauds raynauds1   To spare you the agony of a long explanation, here are my other symptoms:

  • Shooting leg pain for 10+ years
  • Night sweats- like “need to change the jammies and sheets” sweats.
  • Vision issues- Blurriness that would come and go without warning- more sever in R eye than L.
  • Ringing in the ears
  • Really bad “outta nowhere” vertigo attacks which lasted for 45 min to 90 min each time.
  •  Significant memory and concentration issues that started about 5 years ago
  • Complete loss of smell over time.
  • Feeling of sandy/gritty eyes.
  • Repeated sinus infections- even thought I had sinus surgery 12 yrs ago and again 2 weeks ago which means repeated antibiotics for sinus infections.
  • Unusual and severe muscle pains
  • Pin-pointed and targeted joint pain that started in ankles and then progressed to knees.  It was severe, crazy, and episodic when it happened.
  • Increasing GI symptoms over past 10 years
  • Extreme fatigue- especially over past 12 months, napping frequently
  • Extreme weakness in my limbs.
  • Cold hands, ears, nose and feet – always.
  • I have had issues with chest pain, jaw pain and neck pain .
  • I have had speech issues from time to time both in slurring and stuttering out of the blue and without any physical warning that was going to happen.
  • Unusual facial swelling for over 2 years- See pics of before age 40) and after with facial swelling).  I was on Steroids, however there were 2 different kinds of swelling that occurred.  I had typical moon face steroids, but also an allergic reaction swelling in my eyes, upper lips and cheeks which was disfiguring when it happened. A great party trick, but seriously painful.

Here is me at my 40th

TB40th

Here was me less than 2 years later facialswelling Clinically, I’ve had high Eosinophil count, as high as 6500 or 35%.  High IgE levels, over 1000. High ACE levels -as high as 97.  A 2013 CT of chest reveals nodules in my lungs.  A CT of my sinuses revealed almost complete occlusion of Maxillary Sinus. (*side note-I hope I’m using all these terms correctly) In 2013:  had MRSA 2x in my sinuses and was on home IV antibiotics for 6 weeks (multiple times).  I was in the hospital for most of May and June.  Ended up with thrush from all the steroids, and a good ‘ol case of the shingles in July.  Was on full time oxygen for over 3 months.  Had more than 10 biopsies including skin, lymph nodes, multiple bronchoscope’s, open lung (VATS), multiple sinus biopsies, spinal tap, and tons of radiology studies.   And, I broke 3 ribs from coughing in September 2013. At best I require multiple immune suppressive medications- all variations of chemo-to keep my symptoms at bay.  Each treatment comes with its own unique side effects.  At worst, I am on full time oxygen, hospitalized, and not able to walk 10 feet to the bathroom I haven’t been able to work since December of 2013 due to my health although I tried hard for about 1 year to work through my illness and simultaneous workup.  I was guilty of holding team meetings in my hospital room and taking conference calls in-between doctor rounds–Only taking official “time off” for surgeries.  Once released from the hospital given the green light to return to work,  I did my IV in my office for 2 hours every morning for 6 weeks.  Yup,  wheeled a pole around in the office.  Weaving in and out of other employees, leadership and vendors.  I was known to repeatedly use the line “‘It’s not that kinda pole guys; put your dollars away”. The pace and multiple priorities of health and career were unrealistic.  

My Medical Team: My very patient PCP, Dr James Crudele who has seen me for over 20 years with the most random symptoms.  Dr. Crudele and his staff are simply awesome.  Dr. Evan Sorokin, was the one who took the step to send me for a CT scan of chest/sinus.  I remember him saying, “TB you are one of the healthiest people I know, you shouldn’t be sick for this long”.  I thank God for him. I have a fantastic and impressive team of doctors at Penn Medicine –shout out to Dr. Karen Patterson, Dr. Jim Kearney, Dr. Janet Hines and Dr Shiv Sehra, who work as a team in the truest sense of the word.  My core team is comprised of Pulmonary, ENT, Rheumatology, and Infectious Disease.  2nd tier is Nuero and GI.  I see many other specialists and doctors, well over 20 doctors in all.  I also have a great team from National Jewish Health lead by Dr. Fischer and Dr. Cosgrove who work with my Penn doctors promoting a collaborative treatment environment.  Who knew you didn’t have to be Jewish to be a part of National Jewish Health?!

My God: My God is an awesome God and would never give me anything I can’t handle.  Although his expectations do seem somewhat (or VERY) high, especially lately.  The entire outdoors have been my playground for a very long time.  And while I am so grateful for my kids, husband, friends, and so many other things in my life- I have had a bit of time to wonder “What’s this all about?”

My Future: Because of my profession, history, competitive nature and skill set I have naturally started to lean towards patient experience design.  When this disease goes into remission and I am able to go back to work, my first order of business will be to fix healthcare, from the patients perspective, one interaction at a time.  Too lofty of a goal?

Follow me on Twitter Or to find out more about Vasculitis contact: http://www.vasculitisfoundation.org https://twitter.com/tinabrown/status/469464614007484416   If you are interested in contacting me for consulting or speaking engagements relating to patient experience, please fill out the contact form.

  Thanks for visiting!