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The Little Lemonade Stand

serving up an ice cold, bittersweet concoction of one woman's journey raising a family while battling being chronically ill

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Write Your Symptoms Down!

When I first received my “Lupus” diagnosis I was terrified by the unknown, albeit tremendously relieved because I didn’t have to go on feeling like I was crazy and the pain I was experiencing was all in my head.

MY REALITY:

Don’t beat yourself up! Before I was officially diagnosed, I used to pray that the   doctors would find something wrong with me.

I DIDN’T WANT TO BE SICK, but I wanted an answer for why I felt sick. When you’re in constant bone crushing pain, suffering severe migraines, unrelenting fatigue and scooping clumps of hair out of the bottom of the shower every morning, you become desperate for answers.

It took me quite some time to work through the guilt I was feeling. When I finally got a grasp on my emotions I was able to accept MY REALITY, and my reality didn’t include punishing myself for being sick.

I believe it’s fair to say that none of us made the choice to be sick. So don’t confuse your desperation for a diagnosis as anything more than what it truly is. Once we can identify our attacker, the sooner we can stand up and fight to not be a victim to our disease.

The doctor that gave me my definitive diagnoses was a specialist in “Lupus,”had written several books about the disease, taught Rheumatology at one of the most prestigious Universities and worked both a private practice as well as at the most affluent hospitals in our area.

Initially the doctor referred to my disorder as a “Mixed Connective Tissue Disease.” Being the patient and not the doctor, this meant very little to me. I had a few friends that had previously been diagnosed with Lupus, however, I had never heard of an “MCTD” before. When I asked for clarification he explained that I had Lupus and possibly other auto immune processes overlapping, and regardless of what we’re calling it, it had to be treated. From that moment on, I began a file on my condition. And I’m so glad I did. What started out as a two page list of symptoms quickly turned into a few hundred page file that I’ve been collecting for the last seven years. That file consists of all my records, doctor visits, hospital stays and anything else that seemed notable in the progression of my disease. It was important for me to play an active role in my health care and by tracking my symptoms and following my blood work I could identify flare triggers and recognize when things had taken a turn for the worse in my condition.

SIDE NOTE:

I called my distant cousin, a world renowned nephrologist the moment I receive my diagnosis. In our twenty minute conversation he gave me the best advice anyone could have ever bestowed upon me. “Be your own advocate!” He said. “Make sure you take an active role in your health care. Doctors see thousands of other patients and don’t have the time to dedicate to your case alone. So do yourself a favor, collect all your files, get familiar with what you’re up against, ask questions and always push for the treatment you need, because if you don’t fight for yourself, no one else will.”

I can’t stress enough, how important it is to track  your symptoms:

  • Jot down the headaches you experience during the day and what alleviates the pain
  • Make note of when your fatigue is the worst and what treatments help, if any
  • Discuss your sleep habits
  • Eating habits
  • Your daily level of pain on a scale from 1-10, 10 being the worst pain ever
  • Take pictures of the rashes you develop
  • Determine if anything brings the swelling down around your joints
  • Do you feel like collapsing after physical activity?
  • Are you feeling depressed? Or suffer from anxiety?

Unfortunately it can take an infinite amount of time to receive a proper diagnosis, that’s why it’s pertinent that you  start a SYMPTOM JOURNAL because most doctors will benefit from knowing your symptom history, in order guide them toward the proper course of treatment.

Whether you choose to go out and buy a new journal, start printing out and filing all your medical records or enter your symptoms into the note section on your phone; regardless of the method you prefer, all that matters is that you WRITE YOUR SYMPTOMS DOWN!!! 

You deserve the best health advocate around, and that is you!

 

 

 

 

 

 

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REALITY Check #3

In dating…

Neither cadence nor compassion can be expressed through a text, to fully engage is to turn off your phone and listen to what’s being said.

In love…

Let your kindness and generosity be a gift that is selfless in nature. The moment you begin to give in hopes of receiving, is the moment your love becomes conditional.

In life…

No matter how shitty you feel, it’s nothing that a glass of wine, hunk of chocolate or sloppy dog kiss can’t fix.

 

 

-Erin D.

Is It Lupus?

According to The Lupus Foundation of America,  Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. The foundation goes on to explain why Lupus is considered an auto immune disease and what that means.  In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

If you’re reading this blog post it’s safe to say either you have Lupus, are waiting for a proper diagnosis or have a loved one that suffers from the disease. My heart goes out to each and everyone of you, Lupus is an unpredictable, painful auto immune process that affects sufferers as well as their friends and family.

My Lupus diagnosis didn’t come easy. It was two months after giving birth to my second son when the pain in my hands, fingers, elbows and shoulders were too much to bare. I could no longer go into the sun without my cheeks becoming inflamed and a painful rash breaking out all over my chest. My hair began falling out, my stomach and head were constantly throbbing and my level of fatigue kept me home bound for weeks at a time.

My husband and I agreed something was wrong so I went into see my physician. The initial response I received “you’re a new mom, of course you’re sore and tired,” made my blood boil. I KNEW something was wrong (there was that intuitive voice again) so I insisted on seeing a new doctor, who took my symptoms a bit more seriously. After witnessing the swelling and inflammation around my joints, I was referred to a Rheumatologist who then ran a panel of tests to determine if in fact I had an auto immune disease.

A week after going in for  blood work, and imaging of my hands and wrists, I received a call letting me know I had a UCTD (undifferentiated Connective Tissue Disease). In my mind all that meant was I was sick, but they couldn’t determine why. The Rheumatologist explained that auto immune disorders are very difficult to diagnose since they have numerous symptoms, many that overlap and it would possibly take years before they could diagnose exactly what was going on.

So what was the answer? Steroids. Had I known then what I know now about Steroids, I would’ve never taken them. Granted, the inflammation came way down at first, but then a whole other set of side effects set in.

After being pulled off steroids, they moved me to the next level of treatment, a drug used to cure Malaria. Yes, that’s correct, Malaria, and when that didn’t work I was prescribed immunosuppressants . At this point my condition was not improving and we decided it was time to pay out of pocket to see a specialist.

Following a two hour office visit and another round of blood tests from one of the most well respected auto immune experts in the field, I was diagnosed with Lupus and in attempt to get my inflammation under control was started on biological medication. For the next year, my husband gave me bi-weekly injections as I would  hold my breath and pray to get better.

Each medication became trial and error and eventually the doctors began referring to me as an anomaly. The progression of my disease was atypical and although each specialist I saw stuck to the Lupus diagnosis, collectively they believed something else was going on.

And sure enough, it wasn’t long after when they discovered in addition to the Lupus I was suffering from Hyperparathyroidism and Inflammatory Bowel Disease. Although I continue to battle painful flare-ups, knowing the cause behind them has helped me accept my condition tremendously.

 

 

 

 

 

You Know You’re a Mom Raised in the 80’s When…

  • the lullabies you sang to your children consisted of Depeche Mode’s Somebody  or The Bangle’s Eternal Flame.
  • you can replace the stickers on a  Rubix Cube  faster than solving the puzzle.
  • you purchased neon colored onesies for your baby with legwarmers to match.
  • you shed a tear when realizing Mr. Rogers Neighborhood  was no longer on air.
  • you bribed your child with a pair of Underoos if they started using the potty.
  • you still use Bactine as your go to spray for cuts, burns or bites.
  • you think Breakfast Club, Pretty in Pink and Sixteen Candles were classic movies.
  • you still get up and dance when you hear Cyndi Lauper’s Girls Just Want To Have Fun!
  • you realize Garbage Pail Kids are what Pokemon trading cards are today.
  • you think you’re bad ass because you owned both Atari and Colecovision as a kid.
  • your kids refuse to wear the cut-off jean shorts you made them.
  • Polaroid pictures were the closest thing you had to Instagram.
  • you’re kids prefer a text than a hand written note in their lunch.
  • your idea of a rainy day activity involves “tie dye” and the “bedazzler.”
  • you realize interactive Wii has replaced real outdoor sports.
  • your idea of an emoji was a happy faced pin you wore on your clothes.
  • you remember when Hostess “Ding Dongs” came wrapped in tinfoil.

REALITY check #2

In dating…

Dating can be difficult especially when you’ve a laundry list of qualities you insist on finding in a mate. Throw your list out for at least one night, you may just find a connection with someone you least expected.

In family…

Closed minded parents raise their children to believe in what they believe, well adjusted parents raise their children with the tools to think for themselves.

In friendship…

A friend is someone that’ll always tell you when there’s something stuck in your teeth!

-Erin D.

Intuition and Illness go Hand in Hand

 

 

How many times have you experienced a feeling in your gut that something wasn’t right? Or deliberately ignored that little voice inside your head that relentlessly said “hey you! pay attention here!”

If you’re as big a fan as I am with investigative crime shows like Dateline, 48 Hours or 20/20, you’ve heard the same five words uttered at least one time per episode; “I knew something wasn’t right.” It’s no secret that women posses the ability to sense danger before it happens, however, we’re more inclined to ditch our creepy internet date faster than we can say “boo” than we are to take ourselves to the doctor when we feel a bit off.

We’re applauded by friends and family when we’ve removed ourselves from a romantic situation that appeared to be “toxic,” yet are scrutinized or labeled a “hypochondriac” if we pursue a diagnoses when we feel physically ill.

I’m not a doctor, psychologist or psychic for that matter, I can’t get into the minds of your loved ones and tell you what they’re thinking, however, what I can do is share how my ability and willingness to listen to the intuitive voice inside my head has saved me on numerous occasions.

Since I was a child I knew I possessed a strong sense of self. I don’t mean just being confident in my skin, I was hyper-sensitive to the invisible signals that my body or mind would send out, similar to a red-flag warning you might encounter before a natural disaster hits. Thankfully my body has never endured a category three hurricane, but, no doubt I would’ve felt it coming.

In 2009, barely thirty-six weeks pregnant, I went to the doctor for a standard prenatal appointment. Just before my name was called I stepped into the restroom when I was overcome by a terrible feeling that something was wrong. I can’t explain what exactly happened, I didn’t experience any physical sensation, all I know is my intuition told me the baby and I were in danger and without pause I quickly told the doctor I believed my bag (the amniotic sac) had ripped.What a strange thing to say, and without any evidence of this happening. The doctor was concerned, assured me it was way to soon for my bag to break, but would run a couple tests to be safe. As I laid there on the examine table awaiting the results, the voice inside my head kept getting louder and louder, “something’s wrong here and there’s no two ways about it!”

The doctor returned to the examine room and explained that although I did test positive for amniotic fluid, she felt this was a natural occurrence that could happen in the last trimester. I was directed to get dressed, go home and relax.  Although she felt both the baby and I were safe, I was instructed to return to the hospital if there were any changes.

Before gathering my things, I paused, looked her in the eye and once again expressed my level of concern. One thing about following your instinct, it’s just that, yours, and for professionals that make a living basing their diagnosis on concrete numbers and physical evidence, it’s very hard to convince them otherwise.

Against my best judgement, I returned home, laid down on the couch and did everything I could to drown out the voices swirling around my brain. Looking back now, that inner argument going on in my head reminds me of the characters from Pixar’s movie Inside Out. Sadness was moaning,” Why me? Why doesn’t anyone ever listen to me,” Fear chinned in ,”You know we don’t have much time, once your bag is broken you only have 24 hours before you and the baby could…” Anger hastily butt in, blurting out, “What an idiot! What kind of doctor sends you home? You know something’s wrong so get your ass back to the hospital!”

Before I could finish my thought my husband and I were shuffling thru the doors of the Emergency room. I was immediately fast tracked through a multitude of tests and low and behold, my bag was torn, I was losing amniotic fluid quickly and had I not returned to the hospital, the end result would have been tragic.

To say I was frightened would be an understatement, from the moment I delivered my son he was rushed to the NICU where he remained for an entire week. Leaving his side ONLY when the doctors needed to assess him, I sat there, day and night beside the incubator praying for his life and giving thanks to God for the ability to follow my instincts.

My son made a full recovery and today is a healthy, active beautiful boy. However,  shortly after we returned home I noticed my own health was declining and the long journey to my Lupus and IBD diagnosis began. Although this time I refused to let any doctor disregard my concerns and was committed to pursuing the professionals for answers.

 

 

Getting a foot in the door

I had mentioned before that during my senior year in college I landed an internship at one of the most successful production companies in Los Angeles that was known for producing at the time, the hottest REALITY show on air. This truly was the experience that paved my way to becoming a successful producer in REALITY television, but getting the internship was anything but easy.

Let me breakdown the importance of an internship and then I will give you some suggestions on HOW TO LAND AN INTERNSHIP in REALITY television yourself.

Regardless if you’re just getting out of college or are looking to change careers, I can’t stress enough the benefits there are with taking an internship at a company that’s developing, creating and producing in your area of interest. I’m focusing on my experience breaking into REALITY television, because that was MY playground.

From a very young age we’re taught the importance of making money. We’re raised with our parents stressing the need for us to get good grades, prepare for college and if they’re lucky enough to have groomed us to be overachievers (I mean this in the nicest way possible) we’ll go on to further our education and become doctors, lawyers, engineers or possibly the CEO of some large tech company.

However, for most young adults we’re still discovering who we are once we graduate High School or even college for that matter and knowing the path to our career goals may take a bit of trial and error before we discover not only what we’re good at, but what we’d actually like to spend the next 30+ years doing.

THE BENEFITS OF INTERNING:

  • You get hands on experience assisting in a variety of departments within a company.
  • You discover if you’re truly interested in pursuing a career in that field.
  • You get a sense of the workload and time commitments required.
  • You make contacts you never would’ve had the opportunity of knowing.
  • You’re not bound to a contract and/or committed to a specific position.
  • You receive an education that can’t be offered through a text book.
  • You get all the free craft services you want.
  • You’re more likely to be hired after putting in face time around the office.

Now, here comes the difficult part, being hired as an intern. Getting the internship  during my last year in film school taught me a lesson in persistence, which is a quality I believe everyone needs to succeed, regardless of the field you’re pursuing.

HOW TO LAND AN INTERNSHIP IN REALITY TV:

  • Make a list of why you want to work in the specific field you’re pursuing.
  • Put Together a detailed resume and include your abilities (i.e. hard worker, self starter, detail oriented)
  • Decide where you’d like to intern and start COLD CALLING all the companies you’re interested in working for.
  • Check college job boards, staffing sites, craigslist.
  • Talk to everyone you meet about your desire to work in that field; you never know who someone might be related or connected to. (remember, in REALITY television almost ALL the jobs you book will come from networking, so expand your list of contacts).
  • Continue COLD CALLING and ask to be put on a list of interns interested in volunteering.
  • Create a LinkedIn account and connect with everyone you know.
  • Continue COLD CALLING.
  • Apply for positions within REALITY television that don’t require previous experience (i.e. P.A.or Transcriber/logger) you never know, so much is about timing.
  • Continue COLD CALLING.

The truth to how I landed my internship was that I called the production company every Monday for a month. I finally received a call back, at which time they told me they were all staffed up. I politely asked to be put on a waiting list, and by the sound of the voice on the other end, knew I would NEVER hear back from them. I printed up a copy of my latest resume, put it in an envelope and mailed it to the contact I had within that company (emails are so easy for people to delete when they don’t know the sender, however, a physical letter is much harder to throw away without at least opening it up).

After six weeks of relentlessly reaching out, I got the call, “Is this Erin? We have an opening for an intern, I see you’re name is on our list.Are you still interested in coming in?”  And while simultaneously picking my jaw up off the floor, while screaming “Hell yeah!!!!” (inside of course) I ran out, bought myself a new outfit and began my career in REALITY television!

 

REALITY check #1

In Television…

When creating, editing or producing a REALITY story line, follow your instinct on what feels right, because no matter how high up you are, there’ll always be someone above you that’ll change it!

In Life…

Guaranteed, you are bound to be served a basket of lemons throughout life, however, YOU are in control of what you make of them!

In Love…

Go easy on your partner, I’ve worked on enough REALITY dating shows to tell you that no one can compete with the romantic gestures created by a TEAM of talented producers!

-Erin D.

Featured post

Life Before Lupus

 

 

I wasn’t always sick, although once diagnosed, my illness somehow became my identity. Not for me per say, but everyone around me. I didn’t always have Lupus, I wasn’t always suffering from painful bouts of Colitis due to my IBD and I’d never spent the night in the hospital except after giving birth.

My childhood was a bit tumultuous, but that was to be expected having two parents that continually argued. While my father was an unpredictable, temperamental workaholic, my mother was a compassionate, loving, nurturing homemaker. And together my older sister and I lived a relatively balanced life.

I was an extremely outgoing child, loved to be the center of attention and possessed a deep desire to entertain, regardless of my venue. There wasn’t a birthday party, holiday gathering or classroom talent show where I didn’t end up on the top of some table singing my heart out. My parents would always say I was a “natural,” although looking back I wonder what they  meant by that. Honestly, I didn’t mind as long as all eyes were on me!

I spent most of my childhood  in music, voice and dance lessons. I participated in every summer theater program and was cast in every musical I auditioned for. My life revolved around the stage and as I continued to get older my desire of moving to New York and performing on Broadway were all I could dream about.

I began my college education as a music major, quickly shifted to theater and before I had finished my second year my whole life was turned upside down. I was 23 years old when my mom died of a terribly freak accident. While stepping off the porch  one morning she broke her toe, and a fragment of the bone ended up getting lodged in her lungs and killing her, just before her fifty-fifth birthday.

I was devastated losing my mom at such  a young age, she was everything to me; my cheerleader, my sounding board, my best friend and with a sick father battling Diabetes at home, I knew it would be a long time before I would step foot on any stage, much less one on the east coast.

My older sister sat me down and  in the gentlest way possible explained that our father wasn’t well and it was time I started getting REAL about my future. She suggested that I switch my major to something that could provide me with a solid paycheck , and that’s when I became a  television and film major with an emphasis in screenwriting. I redirected my creativity and passion to perform into storytelling, applied for a college internship on my first REALITY television show and viola! my career began.

My father died shortly after I became a producer, just four year after my mother passed and although I was crushed it was a pivotal moment in my life . I had the choice of allowing my pain and fear to take over me and just give up, or embrace the tools my parents bestowed upon me to fight.

I suffer daily from the painful symptoms that go along with having numerous auto immune diseases, and although it feels like I’m continually being knocked down, I’ve made the conscious decision to NEVER give up!

 

 

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