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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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Intuition

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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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.

 

 

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