A Decade of Methamorphosis: by Maria De Leon

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It has been nearly ten years since my life changed drastically – which reminds me of the saying” be careful what you wish for.” It was about the last time that I  remember feeling pure exuberant joy- as if your heart were going to leap out of your chest and take flight.

I said that I wished I could get a new start in life and reinvent myself in my forties..well my wish came true…and I Never been happier. But the journey has not been without struggles, without tears, frustration, depression, and utter rage at other times the battle seemed all uphill. Along the way, I also suffered many personal losses that nearly toppled me over but thank goodness for the small victories and the BIG overwhelming grace of my Heavenly father who has seen fit to see me through till today.

Yesterday, for the first time again I felt a spark of joy building within me and a faint leap of my heart took place within my chest; and all is right with the world. Don’t get me wrong, there is till much to overcome and much to learn about this illness and myself. Yet, I remain hopeful that together we will find more and more therapies, treatments to allow our loved ones suffering from this cruel disease to feel hope and joy once more.

I simply love the blue morpho butterfly- maybe because its beginnings are ordinary like all other butterflies yet it grows to be one of the largest most beautiful butterflies in the world captivating millions of people worldwide with its iridescent beauty. This always fascinated me especially now as I live with a chronic illness which tends to slow me down. I often think about the  30 million insects that exist  around the world composed by 600,000 of species of  species or so yet few insects can draw as much attention and affection in others towards this animal for its uniqueness. having Parkinson’s makes me a bit slow and clumsy just like this butterfly whose flight is one marked by slowness and punctuations due to the incredible span of its wings which is too heavy for its body yet its ability in flight is one which few other predators can master making the blue butterfly difficult to catch. the top wings are not blue colored rather have scales which allow light to reflect off this mirror like surface making it seem blue while its under side which is brown makes the butterflies appear as if the disappear through space as the fly giving them a mystical quality.

They excel gracefully above their limitations just as many Parkinson’s individuals do fooling people in thinking we are slow and dull meanwhile when our inner beauty is expose it is unlike any other. We, too, defy the laws of nature doing and performing above and beyond what our natural capabilities would have us do. Their life is short lived as some of our is due to our illness but that does not diminish in any way the joy others feel to be around us and us with them. Nor is our joy diminished as we capture a glimpse of the natural beauty of this fabulous creature. The world is much more colorful due to their existence just as the world is much better for our transformations after living with PD. This is  because many  like myself have been metamorphed into something much more beautiful than we were before our disease when we were self-righteous, inpatient, living for the moment, without faith, much joy, peace nor self- control, focused on the wrong priorities and truly miserable and unhappy within.

copyright-2016

all rights reserved – Maria De Leon MD

In Search of the Right Pair of Shoes: By Maria De Leon

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Those of you who have been following my blogs for a while and have read my “Parkinson’s Diva,” book will know how much I love a good pair of shoes. Shoes are an extension of ourselves; they speak of our style and who we are without having to utter a single word. plus just as a well tailored outfit makes a woman so do a beautiful well fitted pair of shoes can make a woman feel special, elegant, and capable of conquering the world even if she does not much wealth.  thus, I am always in search of the right pair of shoes that will empower me for whatever situation I am facing at the moment that will complement my attitude style and of course my ever present red lipstick.

Shoes have always been a passion of mine with so many styles and colors to choose from I could go crazy. However, when I began experiencing lower limb dystonia and the pain became more intractable, the first thing I did was rid my closet of all my favorite shoes which I believed were contributing to my pain. I was forced to wear orthopedic shoes which made me feel so self conscious and worst these did not help alleviate my pain.  I missed wearing my stylish shoes and especially my heels which I was accustomed to wearing since I was a teenager. Then came the disequilibrium followed by frequent falling which led to even more trouble after I herniated a lumbar disc. there was no way I could wear my 3 inch stiletto heels any longer. But I was determine that Parkinson’s was not going to dictate how I dressed or what I wore on my feet which made me feel uniquely feminine just the same. So I started my long search for ‘cute,’  comfortable yet ‘stylish’ shoes. Although, over the years I have acquired a new collection of  attractive shoes which have also provided me with the support I needed, I always felt that the range of styles had been dramatically decreased just because I had certain limitations. this meant sacrificing some of the color I love as well as variety of style.

Now, as I have begun to expand my horizons once more I felt I needed something more akin to my style. so for weeks I have been in search of the perfect pair of shoes which could accompany me in all my travels as I lecture around the country. It is always hard to find something elegant yet with a simplistic attractiveness that would give me the confidence required to do my job while maintaining my equilibrium and not causing pain.

After much probing through various sites, I hit the jack pot! I was simply ecstatic. I had finally found beautiful, colorful comfortable shoes that were not too high less than 2 inches most in wedges, kitten keels, sling backs, peep toe, and flats. I was in heaven. only problem is that they are pricy and no longer having a doctor’s salary these are beyond my budget. http://www.beautiFeel.com Even the name of the company was perfect and seemed to suit me. However, I quickly formulated a plan, with the assistance of my fashionista friend in crime who is equally gaga for beautiful shoes. I would invest in THE ONE Perfect pair that would accompany in all my travails. Meanwhile,  I am dreaming of a wedge, sling back peep toe shoe with black and white stripes similar to Kate Spade designer shoes with a small red flower on top ..

A Parkinson’s diva can dream as it is the shoes that allow a woman to conquer the world.. and some day I will again despite this Parkinson’s disease!

Meantime I have redecorated my guest bathroom with paintings of stiletto heels and powerful messages that inspire me to keep going in this race.

copyright-2016

all rights reserved – Maria De Leon MD

Unraveling Complexity of Being a Chronically ill patient: by Maria De Leon

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A decade ago, I would have sworn I was the healthiest person; sure I had minor inconveniences like thyroid cancer at young age and migraines since childhood. But my life on the whole was great! Not that is not great now just different…I took one medication for my thyroid and every so often I needed a migraine abortive medication. I rarely set foot on the premises of a pharmacy. I would take my thyroid mediation like clock work without much fuzz. I NEVER heard from insurance, pharmacist, or other doctors regarding myself. of course, I spent countless hours dealing with all of these regarding my patients. each year, the number of hours I spent on phone and written letters on behalf of my patients steadily increased by now most doctors with a busy practice like mine spend a great deal more time trying to get around the bureaucracy and paper work involved just to get patients what they need to get better. the most frustrating thing besides arguing with insurances about approval of much needed medications was arguing with them about approving benefits to cover their care especially in terminal cases. Too often the help came too late.

Now, I am a walking, breathing, veritable pharmacy – my purse has grown over the years just to accommodate the ever growing number of medications I require to function; which invariably keeps expanding. Each time I think I have stabilized, there pops something new to throw a wrench in the system. Just the other day, I spent the morning at yet another unforeseen doctor’s visit due to acute labyrinthitis from an ear infection and guess what? More meds were thrown in the mix. Now, I have been assigned both a nurse and a pharmacy specialist to my case.

First, where were these people when I needed them to help out with my patients care? Secondly, in theory having a past medical illness or chronic disease  is not supposed to matter in the coverage of an individual by any insurance. Yet, in reality all of us who live with a chronic disease is being analyzed by some committee somewhere as to how much “resources” we are using. These resources which include medical, laboratory, ancillary, and pharmaceutical services are precious commodities which yearly are contracted to the lowest bidder. While, the premiums and out of pocket expenses continue to go higher as the coverage for those commodities continue to go lower for those of us who happen to have the misfortune of having a serious medical problem. Everyone who lives with PD and other chronic illness can testify to this fact.

After laughing out loud in disbelief for having NOT one BUT two specialized people dedicated to help with my care, I began to shake my head regarding the absurdity of our medical system. After speaking with these well meaning individuals who did not realized, I was a doctor, neither one had any answers to my REAL problems or concerns. No! I DON’T NEED SPECIAL EQUIPMENT, TRANSPORTATION, OR HOME SERVICES- ALL I NEED IS APPROVAL OF MY EXTREMELY EXPENSIVE MEDICATIONS AND TESTS so I don’t require ANY of the above and won’t end-up in the hospital as many of my patients have in the past due to poor coverage of medications and frequent changes dictated NOT by real medicine rather by pure economics!

So, after an hour each, they both politely stated they could NOT help with my problems. They could not convince the people they work for that these medicines are keeping me functioning and that perhaps might even help me return to gainful employment and at minimum are keeping me out of the hospital and getting worse medical problems if they were only able to approve the PET scan my physician ordered to make sure my cancer has not returned. But, to no avail. The answer was ALWAYS NO! But, will call you again next month at the same time. No wonder I like that new song of Meghan Trainor ” No.” “My number is no!, my name is no!, my {everything} is NO!” when I talk to the insurance companies…so do we need to let it go?

I hope we DON’T let it go otherwise we as a society will continue to hurt and suffer the consequences and end-up in a state not very dissimilar to the one in Mexico and other countries where socialized medicine has taken root.

I still cringe at the terrible experience my family underwent while my grandfather was hospitalized for a GI bleed in my hometown in Mexico. First, after having to transfer him to a “private” hospital because there were no medicines or even much staff at the government owned facility-the specialist he needed, not unlike what is already happening here in many smaller communities, was 5 hours away in another state and could not come for several days. So, he continued to bleed for which he required 14 pints of blood which by the way the family had to procure on their own because the government has no money to maintain a blood bank. He ended with 2 mayor strokes subsequently- which of course I witnessed personally and was helpless to do anything about since there was no treatment available for what he needed.

I am afraid that as the population continues to age and incidence of dementia, Parkinson’s, strokes and other chronic debilitating diseases begin to rise the quality of life for each individual will steadily decline in this country despite all the major medical and technological advances this country has unless we step up and demand change. please contact PAN/MJfox  @ http://www.parkinsonsaction.org  and after June 1st @ http://www.michaeljfox.org/policy

-let them know its not ok to have a monthly struggle just to get the medicines your doctor prescribed or have to choose between basic necessities and affording expensive medications which now include many popular generic brands which in some cases cost the same or more than the brand! and remember to just say No!

copyright-2016

all rights reserved – Maria De Leon MD