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”
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:
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? 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
Here was me less than 2 years later 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!