Skip the frappucino. Don't indulge in the full cable package. Outfit your kitchen with dangerously-thin oven mitts from the dollar store. These were the rules I followed if I wanted to make rent each month. If you were looking for a thrifty 20-something, I was already it. Having voluntarily moved out of my parent's house with my fiancé just a few short months ago, I was using every trick in the book to stretch my dollar just an inch further.
It's true, I wasn't working at McDonald's making minimum wage, but when my health took a nosedive after being diagnosed with a rare autonomic nervous system condition, so did the amount of hours I could work as a freelance writer and PR agent.
I was one of the lucky ones. One of my girlfriends, a waitress working full-time carrying heavy trays, strapped her wrists with ace bandages when she began having symptoms of carpel tunnel. Another friend updated his status asking if anyone knew how to take a cast off after breaking his wrist in a car accident. I had insurance through my parents, and while these days I was responsible for my co-pays, my mom had taken the brunt of medical debt that several years without a diagnosis had left me with.
The first few months after I was diagnosed with Postural Orthostatic Tachycardia Syndrome I was a zombie. I didn't know how to treat my symptoms and couldn't find a doctor who would take the time to research the rare condition. Without a plan and with no one to manage my treatment, I was spending every other day in the emergency room with terrifying heart palpitations, dehydration and episodes of blacking out.
We really only knew of one treatment that could help relieve my symptoms -- IV Saline Therapy -- but I was only able to get an IV when I went to the emergency room. By then it was already too late to recover from just one liter of saline and most of the doctors in an emergency setting had never heard of my disease, let alone knew how to treat it.
I was bouncing from specialist to specialist, never really getting a firm grip on my treatment and always under the scrutiny of a new physician. When I wasn't trying to explain my condition I was struggling to organize the daily handfuls of medical bills and dreading picking up my phone to each new debt collector. I was sick, broke, and my symptoms were out of control.
I had seen so many doctors, but when it came time to make changes or try new treatments most doctors were unwilling to follow up or look into new medications. They had 15 minutes to get me in, out, and better and when they couldn't, they would give up and suggest I see a new specialist.
Sorting through my medical documents, paperwork from the hospital, trying to research new treatments on my own -- my disease was becoming my whole life.
I knew I needed a case manager. A secretary. An advocate. I needed someone who would manage the circus of cardiologists, immunologists, ENTS and neurologists parading in and out of my life. My illness had begun to strip everything from me -- my job and my savings, my independence and my ability to see my friends, play with my dog, and drive my car. It came down to the question of what I was willing to give away to start getting it all back.
The answer was money. All of my money. If it meant moving back in with my parents, that's what I would have to do.
So, letting go of any last vestiges of independence I'd gained over the last year I started searching for a concierge doctor to take on my case.
After my first search a program called MDVIP came up. They had a directory of physicians on their plan and with a membership fee; I could interview and visit any one of them to see if they were the right fit. Under their membership description I would have full-time access to my chosen doctor, including having my calls go directly to their cell phone. If I needed to go to the emergency room they would meet me there to direct my care and would communicate with all of my other doctors to make sure I wasn't being over-medicated or missing a crucial diagnosis.
I knew immediately that a program like this would change my life -- if it could really do what it described.
It took me about a week to find and interview the right physician. He was going to take my calls in the middle of the night, meet me in the emergency room to direct my treatment, make calls to researchers who were working on new treatments. He was also willing to give me regular IV Saline Therapy right in his office so I could take them preventatively. His patient load, in comparison to other local internists, was shockingly small.
His secretaries told me that on average, patient appointments lasted about an hour.
She pulled up the membership contract to the counter for me to sign. This was it. I was going to write a check that would bankrupt me for a year.
When I saw the dollar amount I felt like my knees were going to give. It was not the number I was expecting.
"Is that just for this month?" I asked.
"No, that's for six months."
I put down the pen. "Wait. What? How does this work?"
She told me that I would pay a six-month membership fee -- the fee was there to maintain availability and a small patient load. Then she'd bill my insurance per visit and I'd pay whatever my general co-pay was.
In my case, this equaled just a little more than $200 per month.
The cloud in my head cleared. I wouldn't have to move back in with my parents. I COULD BUY NEW OVEN MITTS.
Compared to the constant emergency room visits and the kitchen sink of medications I'd had prescribed (but hadn't worked) this was a godsend. With a few cutbacks I could afford this -- and if together we accomplished as much as I hoped we could, I might even feel well enough to work more than I did now.
Over the next few weeks I steadily unloaded what had felt like a permanent weight off my shoulders and into my doctor's hands. With him managing my treatment, other doctors, and making sure I would never have to spend hours explaining myself before getting emergency treatment -- I could have a life again.
It's been a little over a year since then and I still look at hiring Dr. Santa Maria as one of the best decisions I've ever made in my adult life. I now work almost full time and still manage to live comfortably while paying for my own membership, appointments, medications and infrequent (comparatively) emergency room visits. Dr. Santa Maria has called professors, researchers, and doctors from across the country to consult on my treatment options. He and his staff orchestrate the work of my other specialists and coordinate my multi-system issues.
For some it's a stalker ex-boyfriend, for others it's a big move to a new place, but whatever your life changer is, now is the time to take stock of your ability to manage it -- not when you're already being pinballed from one wrong diagnosis to another. Most chronic illnesses strike in our late teens and early 20s. For those who can live without the Friday night cocktail or online shopping splurge, concierge medicine might just be the most convenient fix.
I thought I was looking for a doctor to save my out-of-control body, but in the end what I found was someone who was there to save my life -- all my lives, my body's life, my work life and my social life. When was the last time your co-pay covered all of that?
Ilana Jacqueline is a 23-year-old freelance writer and patient advocate from South Florida. She's been writing professionally since 2004 on everything from health and wellness to celebrities and beauty. Her blog, www.letsfeelbetter.com, is a personal collection of anecdotes about dealing with love, life and career with chronic illness.
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