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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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sick mommy

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.

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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.

 

 

 

 

 

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.

 

 

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!

 

 

Featured post

My own REALITY

Reality is merely an illusion, albeit a very persistent one.

-Albert Einstein

Welcome to The Little Lemonade Stand where I’ll be serving up an ice cold, bittersweet concoction of what life’s like raising a family while being sick.

When I set out to write this blog my intention was solely to focus on how I became a successful REALITY television producer. I wanted to share my accomplishments as well as my failures in hopes of giving you the advice I so badly needed when starting out. However, two paragraphs into my first blog post, it occurred to me,  I’ve spent most of my adult life working behind the scenes in REALITY TV, where people are REAL (for the most part) emotions are raw and audiences tune in weekly hoping to justify the drama in their own lives.

And although molding the story lines that went into some of your favorite shows was second nature to me, excepting My own REALITY was a whole other challenge. Just as I’ve spent many years producing stories that others can identify with, it’s time for me to open up and share my journey in hopes of reaching others out there who desperately need to know they’re not alone.

Throughout this blog I will share:

  • When I first noticed something was wrong physically.
  • The endless doctors and tests I endured before being diagnosed.
  • How and when  I was diagnosed with Lupus and IBD.
  • The symptoms and pain I manage on a daily basis.
  • How friends and family began treating me once I got sick.
  • The challenges I face raising two young boys.
  • The guilt I battle daily.
  • How I handle the physical changes in my appearance.
  • The amazing products that have made my life easier.
  • The gratitude list I acknowledge everyday.
  • And the importance of having your own personal mantra, mine being, “you’re not allowed to quit!”
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