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

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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!