Thanksgiving in the midst of adversity: By Maria De Leon

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“In all things give thanks…” 1 Thessalonians 5:18

As the years go by, I find that it is the small things in life that truly matter. It is these things that make a life worth living and worth remembering – so this thanksgiving season I like to express my gratitude for the small things that punctuate my life in the midst of my ongoing ever complex not one but two chronic illnesses. Having now been diagnosed with lupus as well!

This year has been a year of many important milestones- celebrating 20th anniversary, turning 50, getting the opportunity to be a ‘starlet’ for a week, reuniting with long lost friends, honored to give first all women with Parkinson’s conference in Indiana, had the honor to be part of an avant-garde weekend retreat for Parkinson’s patients and their caregivers in South Dakota with nearly a 100 in attendance, being part of a pilot program to help young women to grow spiritually, learn life skills, and be empowered in the midst of their circumstances in order to thrive as successful adults turning into tomorrow’s fearless mothers, wives, friends, professionals and leaders. Finally, I also had the privilege of having my ‘parkinsonsdiva’ blog be recognized twice as one of the BEST! In the PD community (This of course could not happen without all you wonderful people (women) who take time to read it and make it one of the best! thank you!)

I was touched by one of the most beautiful common experiences which took an unexpected twist for a memorable and meaningful events of my life just when I needed hope and encouragement the most.

We all know that most of our lives are punctuated by peaks and valleys and although we wish we could go from peak to peak there is still something beautiful and comforting in the valleys. The valleys in biblical times is where one was most certain to find God and healing could commence from inside out. But aside from finding salvation in the least likely of places, we also have signs that continue to inspire us and gives us hope in our daily walks. When my dad was terminally ill, I witnessed the most magnificent double rainbow as I was driving home full of tears on my way back from the hospital and upon seeing such spectacular view I felt at peace and knew everything was going to be okay.

Four years later, about the same time my dad started his downward decline I began to have serious medical issues which have been taking me away to some extent from you and the things I love. Yet, on my way back from a very long and arduous trip to the hospital and a slew of specialist as I dosed off while my mom drove, I saw the edge of a rainbow. I wondered out loud if anyone had ever seen the end of a rainbow- after all they are said to be full circles which I had privilege of seeing once before in the Las Vegas. Perhaps there instead of a pot of gold I could find a greater treasure like health once more.

Suddenly, I began to see one rainbow after another all sizes and brilliance and then we came to the end of a rainbow it merged right into the spot where our car was standing at the light but if you looked up it seem to sprout out of us from inside the car. I sat up and marveled at the phenomenon but in the next 40 minutes of our journey this occurrence took place at least 4 more times.-lifting my sadness, and strengthening my weakening resolve to keep on fighting for the people and the things I love most. Just to let me know that these signs from heaven were not mere coincidences that he still was in control of my live and my well-being and that my faith in God had been duly noted for once we arrived to a sunny home leaving rain behind- when I stepped out once more as the sun was beginning to set amidst a purplish sky there it was once more a splendid rainbow across the sky.
You may say, how can I give thanks living with PD? Or how can I find joy in my present circumstances? Believe me, I understand your trepidation. Is not easy to feat to face our fears but you can do it because you are not alone. We (especially me) are here to share the rainbows with you to help find your inner peace and conquer the valleys of loneliness, illness, frustration, and hopelessness. As I have learned to conquer my fears of living life with a progressive debilitating illness and face head on an uncertain future by believing in God you too can find harmony and give thanks in the midst of adversity.

Although, there have been many losses I have also experienced many great things this year when is all added up the pluses will definitely outweigh the negatives. I continue to be grateful for my health however failing it maybe at times, my family, friends and the whole Parkinson’s community who has invited me into their homes.
Thank you,
Parkinson’s Diva
Happy Thanksgiving!!!!

Copyright2018
All rights reserved by Maria De Leon MD

Rhapsody of a Diva: By Maria De Leon

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“We are the champions of the world. We will keep on fighting till the end…” (Queen)

Over the last few weeks, as I have tried to make sense of my life in light of my seemingly endless medical problem list; I have had plenty of time for introspection as I lingered around the house in my pajamas watching movies when not in pain, nauseated, or having fever and chills. My favorite movie genre as of late are those based on real life. In my moments of feeling better and not having to see a doctor or get yet another test done to figure the conundrum that is my illness, it occurred to me that in life the most beautiful things usually come out of the darkest and most painful times our life’s.

Throughout history we are reminded time and time again that the things that inspire and endure the test of time are those that arise from the ashes of near annihilation.

I love the story of the thorn bird legend, although believed to be purely mythical, is the perfect embodiment of a notion that greatness can only be achieved by walking through fire or standing in the lion’s den. The Celtic legend, upon which the story is supposedly based on, says that there lives a “bird that sings more sweetly than any other on earth as he dies that even God in heaven stands still and smiles.” While dying he rises above the agony of his pain caused by being impaled on the sharpest thorn. Such examples of greatness can only emerge out of the fiery ashes. The outcome of such struggles of the soul, if we are courageous enough to stand and fight, typically bring forth redemption, self-love, understanding, and compassion which permeates throughout in the same fashion in which the light casts its warmth upon a dark cold room when the window is open to let sunshine in. A small light can illuminate even the darkest of rooms but a dark room can never overpower even the faintest of lights. So keep on fighting even if you feel like you don’t have the stamina to go on….
The greatest feats and gifts to mankind have been borne out of despair, hopelessness, uncertainty and loneliness.

Beethoven composed his 9th symphony “Ode to Joy” when he was totally deaf. Van Gogh painted “Starry Night” in the midst of a mental asylum cell, the apostle Paul wrote his most powerful letters while imprisoned and our salvation was bought at the ultimate price of pain and agony on a rugged cross.
What will my legacy be to this world and my children be? I wonder. Will my life be an example of courage and triumph? What will yours be? Will you wallow in your pain and stay a victim? or will you like many before us have the courage to conquer and not be defeated by our present circumstances?
As for me: through the grace of God I have discovered courage in the midst of my never-ending battles with physical illness along with a renewed sense of purpose and hope.
So I sing to myself… “What a wonderful world!”
Will you sing too with a new sense of purpose?

I love to hear your stories …would you share with me and others so we can all gain courage and strength by knowing we have been able to overcome thus far.

Many Blessings to all on this beautiful day.
Love,
Parkinsonsdiva

@copyright2018
All rights reserved by Maria de Leon

What I have been surprised to discover while living with Parkinson’s disease? By Maria De Leon

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The other day, I dreamt of God above – He smiled and said: ‘don’t worry, your faith is strong; you know you have been here before. Just gaze upon my face and everything shall be alright.’ I smiled at HIM and softly uttered a broken Hallelujah! – Alleluia. Alleluia
Although, my faith IS strong and has grown immensely over the last decade somedays it seems that the dark clouds in life want to hang on just a bit longer than usual putting all our beliefs to the test.
This seems to be the case for me over the last month.

So, I had to remind myself of how far I have come and all the challenges I have endured in the past which have only served to make me stronger. I like to think of the peaks and valleys we have gone through in our life as a mechanism to help us get through things faster and with greater ease. (Just like the brain network is connected via myelinated sheaths which help disseminate information quicker from one area to another- if we would interrupt the myelin, information would surely get delayed and we might even find ourselves stuck. Such are our past experiences, the more we have overcome the greater ease we have of moving forward…)

I have learned that God is strongest when I am weak.
I have learned that I am much stronger than I once thought and much more resilient than I ever gave myself credit for. I thought I would never survive the first diagnosis of a chronic illness, nor giving up my practice. Yet, here I stand …
Despite years of trying to hide my physical flaws, I have learned to embrace those blemishes, scars, and all. I have learned to focus on my most attractive features which are my smile and my “Spanish” eyes.
I have learned to love myself strengths and weaknesses. After all beauty begins when we first decide to love ourselves. At times, we must learn to turn our weaknesses into strengths. For instance, once upon a time I was extremely shy and afraid of speaking in public (hard to believe I know). I would become paralyzed with fear of being judged. These days however, I embrace it fully. Public speaking has been a source of great joy in my life as I seem to have become the voice for women with Parkinson’s disease and other chronic illnesses.
I have learned that we all have the inner fortitude to do what you could not do before- I am learning to wait in silence and developing beaucoup patience!
I have learned that you will feel what you did not before- sympathy, empathy, kindness, love, gratitude…
I have become knowledgeable on things I never knew.
I have also learned that inner beauty never fades.
I love being a mom.
I am creative after all.
I am a trendsetter and fashionista at heart.
I am excited about living life to the fullest.
I cherish my time with my girlfriends.
Beauty and inspiration come from places we least expect.
All women are strong beautiful and able and we were fiercely made for a time such as this.
So go ahead find your passion and bring out your inner beauty by discovering new horizons and gifts within yourself. Despite what you may be facing today- you are not alone, you are loved, and this too shall pass! You just have to hold on long enough and keep the faith.

@copyright2018
all rights reserved by Maria De Leon

The Beauty of Self-Care: By Maria De Leon

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“Self care is not self indulgence. Self care is self respect and an act of survival.” Lorde

I am not sure about you ladies, but as of late I have been wobbling on an emotional precipice between the recent negative medical news of my husband, my daughter going away to college (perhaps far from home in a world where there appears to be increased chaos at each turn), my mother’s declining cognitive status, and my own current relentless wave of medical trials and tribulations. Sometimes as my dad would often say, “too much is too much.”

My natural inclination is to push forward on all fronts no matter how I feel. As a physician and a mother, I am used to taking charge during a crisis and stepping up as the caregiver placing my own needs at the bottom of the list. However, throughout my years of living with PD, I have discovered that not prioritizing myself however only leads to a slippery slope. My bottled up frustrations, stress, and malaise have a tendency to creep up to the surface like an erupting volcano seeping through every pore of my being (Curse you Parkinson’s disease, migraines and whatever other medical problem I have) causing me to become the true epitome of a fiery dragon. Just like a volcano can no more contain its pressure so do our feelings must find a way out – unfortunately when they do they cannot only be explosive but extremely lethal causing devastation in its wake, as we have seen in the news last few days with the eruption of Kilauea.

One of the things I always talk about in managing this chronic and any chronic illness is self-care and prioritizing once self. Easier said than done especially when you got all the burners on.
So, in the midst of all these new challenges, I have had to force myself to find time for me to heal in order to continue caring for all those who depend on me and get to the root of my ailments. An-empty-lantern-provides-no-light_-Self-care-is-the-fuel-that-allows-your-light-to-shine-brightly_-Unknown

Of course, this is much more difficult when you look and feel like you are ten months pregnant carrying twins! Yes, I got a partial small bowel obstruction-yikes! How did this happen? I was doing so well? For starters traveling lots, not keeping schedule on meals, along with increase stress did not help and possibly aided in my current predicament.

First order of business besides getting rid of relentless nausea and vomiting and prevent dehydration while reliving obstruction was to disconnect from the world- hence my lack of presence in social media as of late. I have also committed myself to spending more time with my daughter talking…this time is priceless.
Reminding myself and my family that frivolous time spent on one self like reading a favorite book, doing art, laughing with a friend, watching a favorite movie, listening to great music, or simply resting actually does more for the healing process than medications at times.empty cup

I have caught up on sleep. Allowing myself to sleep as much as my body needed to recover. I am doing better but not 100% back to ‘normal’ yet. Even in my “pregnant” state, I have continued my breathing treatments and meditation. These have helped me tremendously in calming my pain, anxiety and discomfort of having a huge belly.
I even had a manicure just to feel better- bright pink! Plus, even though I have been feeling like crap for the last 3 weeks, I found that doing some talks over the web helped my mood and my overall predisposition. Bringing smiles to others always brings back positive vibes into our souls.

Remember, that if we want to be ambassadors for those who have a chronic illness like PD and bring positive changes, we must first be good to ourselves and be happy behind the scenes when just you and no one else is watching. Do the things I have recommended often, like take time for yourself every day, make time for family and loved ones, do things that make you happy, pamper yourself (there are many ways of doing this without going broke). If you feel that the world is spinning out of control, go ahead and inject some kindness back into it.
Love to hear your own self-care strategies in dealing with chronic illness.

self care
Xoxo
Parkinson’s Diva

copyright@2018
all rights reserved by Maria De Leon

Gordilocks & the 3 Couches: by Maria De León

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‘Gordilocks’ as my brother likes to call me sometimes playfully (meaning Chunky locks) is the way I feel lately and my house is a veritable simile to the well known story of Goldie Locks and the 3 little bears.  Each time I enter my living room I feel like this beloved character testament trying to find the ‘just the right’ piece of furniture to fit my needs of the day which vary according to my pd symptoms. In my story, lately I feel not only like Goldie locks but seem to have acquired some of the characteristics of the bear not only in growling but also in time spent hibernating, the latter due to inability to tolerate the slightest chill or wind breeze.

What is gordilocks supposed to do when forced to spend so much time indoors in one place? Go from room to room trying to find the most comfortable place and position.

Subsequently, I have accumulated 3 different color and styles of sofas one living area which was never supposed to be the case. Well at least despite the eclectic look they work well together. It all started with one comfy sofa bought specifically for me because of my constant back pain at the onset of my PD. This couch allows me to recline comfortably at least that was the case several years ago; however it’s springs are starting to wear no longer as comfy for me as it used to be. As my symptoms have progressed, the fact that it seats rather low makes it that much harder to get up from and sit in it without rocking back and forth or plopping yourself on it.

For these reasons, about a 2 years ago I decided to go in search of a replacement and thought I had found the perfect sofa. It’s longer, taller and wider. Yay! It provides great support for my back when laying down; but when I sit it causes my legs to go numb because of my short legs causing the edge of couch to press on my peroneal nerves.  Fortunately, papa bear and baby bear both like the first couch so they did not let me get rid of so it continued to have it’s place in our family room. Then with all my bouts of recent illnesses, I have been forced to spend more time not only being house bound but bed bound as well. To break monotony, I go from bedroom to family room. One night after a very rough couple of weeks, I was so frustrated with my back pain, stiffness, inability to get of couch and over all uncomfortable chaises, recliners and chairs, I decided to order a new sofa on line, since I had not found one in any of the local stores and Houston was simply too far to travel to in my condition  Oh boy! not recommended- what was i thinking? i was not – i was desperate. I spent hours looking at websites with hundreds of styles. Finally, at last I found one I thought I could live with and designed to complement the one I was planning on keeping.  The much anticipated delivery  date arrived and the sofa proved to be  extremely comfy as well as beautiful. but there was one tiny little problem, it was not a couch it was a slightly bigger loveseat. Turns out that  in all my mental fog caused by the pain, I took the wrong measurements for the custom sofa.  now i had a third sofa that was too short for me to lay down in and because it mas specially made no returns were allowed.  It would be a perfect doctors couch if i only could recline in it as i would like.

Now, my family and i laugh at my collection and each have been assigned subconsciously a couch that is just right for each member of our house. Funny thing is that i still spend most of my time on the couch i have been trying to replace for several years. so, the little sofa is my daughter’s favorite seating  when we are together in family room; my husband has the big sturdy couch and i am left with the softest one, even if it does not fit just right!

Will someone give up their couch to make room for a new one? Well, perhaps when my daughter goes to college i might be able to scramble furniture around. Till then i will continue to test each and everyone of them each day to find the one that is just right for me.

@copy right 2018

all rights reserved by maria de leon md

 

Bridges & Scenic Roads: by Maria De León

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“Nothing comes ahead of its time and nothing ever happens that did not need to happen.” Byron Katie

As I sit here fighting another bout of bronchitis, yet again; I am inclined to feel a bit sorry for myself. But, all I have to do is stop and look at all the road I have covered over the last year to quickly shake this silly notion.

I have never been a very patient person especially when traveling. I like to zoom, zoom. I am a highway kind of girl. I remember the first time my husband and I took a trip toghter as newly weds to visit his family, he thought it would be nice to take the Natchez Trace Parkway. I nearly lost it; it seemed we had travelled for an eternity at a turtles crawl (can’t travel faster than 45mph). Had I been driving, I would have probably gotten several citations or found a way to get off faster than immediately.Image result for beautiful architectural wooden bridges

At the time, I was not interested in the beautiful sights we encountered along the way nor in the fauna present. I simply wanted to arrive at our destination. This was the state of my life at that time-pretty much rush, rush between work, family, commitments, conferences, etc.. I was always looking ahead at the next destination never really enjoying the moment for the most part until Parkinson’s decided to pay me a visit and make its self at home. Suddenly,  the breaks came screeching on putting a stop to all my senseless running around.Image result for beautiful architectural bridges of the world

Over the last decade, I  have had to learn to enjoy those backroads and not be so concerned about the destination. We all know that living with a chronic illness like PD  permeates into all aspects of our lives affecting everyone which comes into close proximity. thus, more than ever we have to learn to find a balance and enjoy each moment as it comes and not be paralyzed or fearful of what might happen next. Living with PD is truly unpredictable day to day and even hour by hour. Friday was another perfect example of this. I woke up feeling great attended a GO Red luncheon for women with my friend. We had a blast but by the  time I got home in the afternoon, I was out of commission screwing up all the evening and weekend plans.

Instead of worrying about reaching some obscure destination, or fretting over the plans that have been ruined (these days I prefer calling it altered rather than ruined). I have come to enjoy those unexpected detours along the way which may lead to unexpected finds like an old wooden bridge or a beautiful waterfall. These sometimes brief other times extended detours through backroads and scenic routes has helped me discover myself, my true friends, my family and many other people who suffer chronic illnesses which I might have not gotten to know otherwise. This weekend I got to enjoy the company of my daughter and husband although from a distance since I did not want to contaminate them.Image result for beautiful architectural bridges of the world

When I find myself feeling restless and impatient like today, I remind myself that those  eternally winding back roads are helping me build a bridge to my ultimate destination. As we know some bridges are short and some are much longer. Image result for beautiful architectural bridges of the world

Those bridges took years to build some even had to be rebuilt.  Meantime, i keep moving forward even if I feel it’s only one step a day. Someday my bridge will be completed and it will be a grand architectural monument just like those magnificent bridges, I love (e.g. Sydney Harbor Bridge, the London Bridge, and the Golden Gate Bridge to name a few).  My life like those grand architectural structures will stand as a testament of a victorious life which conquered adversity and overcame big odds to bring beauty and function to others.

Thanks to my illness, as my favorite poet Frost once penned, I have taken the road less travelled and this has made all the difference…

I hope today wherever you may find yourself, you find the strength and courage to enjoy those unexpected detours in life and beginning anew building those magnificent bridges.

@copyright 2018

all rights reserved by Maria De León

Embrace the Possibilities: by Maria De León

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As we reach the end of another year, one thing is certain the one thing we can count on is change. Seasons change, fashion changes, friends come and go, our goals, our likes dislikes change and our health stands in the balance of a see-saw not knowing when we will go up or come down.

When I was staring my medical career, I knew I was in for a long haul of commitment and focus. I needed to get myself prepared for what laid ahead mentally. So my best friend from childhood and I decided to take a trip to Acapulco. No better way to replenish the soul and mind than by sitting at the edge of the ocean contemplating and listening to the sound of the  waves. After 27 hours, we finally arrived anxious to enjoy the beach, my friend and I ventured out in the evening as the sun was going down and the tides were beginning to pick up. Yet, all we wanted was to bask in the view and maybe get our feet wet a bit. I carefully laid out my beach towel, my clothes, sandals, and other possessions, I was about to sit on my towel when a huge wave crashed upon the shore engulfing my belongings. Our carefully chosen spot had proven to be not far enough from the rising evening  tides. Apparently, this was high tide season. As the waves retrieved, it carried with it all my possessions leaving me mystified.

As I watched all of my things being dragged into the ocean, I took off running after it. It had taken my wallet. However, the waves were not only faster but retrieved deeper into the bay. As we sat there a bit dumbfounded about how quickly it had all happened taking us by surprise and resigning myself that on my first day I had lost all my money.  When a few minutes later another huge wave happened upon the shore bigger than the first one as it crashing briskly upon us and the rocks but as it retrieved I began to notice a resurfacing of my things. Quickly my friend and I sprang to retrieve my wallet first before it could be engulfed again perhaps this time never to be seen an de completely ruining my vacation. Of course, everything was completely soiled. The large beach towel was filed with muddy sand, seashells and a few small crabs. I did not care all my things were back.

This event thought me that sometimes the change of the tides can take us by surprise leaving us discombobulated and dumbfounded, wondering were to go next or what to do.

But, just as surely as the sun rises and sets, if  we just keep breathing staying alive fighting for the things we want and keeping a watchful eye eventually the same tide will come again bringing back that which we thought was gone and lost forever. Better yet giving us a way to move from the shore to new lands and dreams because at some point all of us have to move person past the crest line.

as we start a brand new year with 365 blank pages to fill, remember that although we are not in control of when the tide comes in or how big the crest of the waves are, we are in control of how we allow the tides of life to impact us. In the same trip a couple of days later, my friend and I decided to eat at this mom and pop makeshift restaurant on the same beach while we ate barefooted. I enjoyed the coming and going of the waves past my feet underneath the table where we sat. To this day I savor the thought and wish to return to that place.

So as you find yourself face to face with an unexpected tide which might leave you Topsy curvy rather than panic or give up; wait awhile the tide will eventually change allowing you to move forward an din doing so take inventory and breath in the endless possibilities. Notwithstanding that It is our impossibilities that become our greatest gifts – it certainly has been the case for me having reinvented myself and enjoying my life fully despite living with pd for a decade.

Trust that nothing is ever wasted and in the end if you allow yourself to embrace the changes that the tides brings you will emerge softer, gentler, kinder, more courageous, and stronger than ever.

Happy Holidays!

@copyright 2017

all rights reserved by Maria De Leon MD