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

Parkinson’s mom diary: Maria De Leon

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” A mother is she who can take the place of all others but whose place no one else can take.” unknown

To my dear readers – first i want to thank everyone for making this journey more fun.. and for making this site one of your favorites.

As we near the month of May when we celebrate mother’s day both in this country and other countries around the world such as in my native Mexico, I thought i would write about being a mom with PD.

All of us who are moms know how wonderful and equally challenging is to be a mom; just when you think you have gotten the hang of a stage or phase – our children go on and change. Now imagine having a chronic illness like parkinson’s disease where although no objective fluctuations are noticed or documented we know for a FACT that fluctuations in our daily lives are a part of living with a chronic illness. Sometimes we just don’t know how we are going to feel the next minute much less the next day or month. As my daughter reminded me today when we were having a conversation in the car on way to school, “mom, I am glad you are feeling well these days but it wont last, is just a matter of time!” when i gave her a side ways look she replied: “you know is true. that’s what happens with your disease.”

As much as I protest this statement and try to reassure her (or rather) that this time will be different, i know that as long as i have PD i will have ups and downs which will interfere with my ability to perform my motherly duties. (secretly praying these deviations are few and far between).

However, these roller-coaster episodes has made me reevaluate my thinking and recommendations for women who have PD and want to be moms.

Motherhood as I said is a wonderful experience but is not for the faint of heart because each child comes with his/her own challenges and gifts to deal with; so having more or less is not necessarily the answer.

I was lucky I already had my daughter when I got diagnosed. Yet, because I was so young she has had to live with my illness practically her entire life. Plus, as a mom I have had to struggle much more than I would have should I had been a healthy mom in raising her and being a constant in her life. I was blessed to have friends and family to help me care for her especially during those times when the medication made me so ill i could not drive or the disease was so bad I could not stand to be touched much less cuddle her- something that broke my heart and still to this day feel guilty about.

So deciding to have a child once you are diagnosed with PD is not an easy think to decide and should not be taken lightly. Although, as far as me know fertility does not decrease with the disease and health of fetus is not affected by having PD, many of the medications currently used to treat the symptoms of Parkinson’s are contraindicated at least partially for lack of information on the short and long term effects of the fetus. Further, some of these medications also can be passed through the milk making breast feeding difficult after delivery.

Another thing, one must keep in mind is that PD symptoms can worsen during pregnancy. But, assuming that you are able to carry the pregnancy to full term there are many other issues to consider. Remember this is a progressive disease after all. You must consider not only the stage that you are in at the time of conception but be able to look ahead at the  age you will be and the stage you might be at when your children reach certain milestones like going to elementary school, high school etc. you must also consider your support group – is there a reliable one? Does this include a supportive spouse/ partner? In my early stages of disease I would not have been able to care for my toddler had not been for my husband stepping up and being mom and dad something not every father can do or is willing to do.

We all think about the sleepless nights with infants but for me the hardest years are once they become independent. The problems are bigger, more serious, and require much more involvement from a parent in establishing appropriate boundaries and guidelines. No matter the age children need clear boundaries. If you are too sick to reinforce the rules will only create problems for them as adults in the future.

I do more running around now that my daughter is a teenager than i did when she was younger plus on top of my illness i have increased age which makes me have less stamina and less able or willing to multitask as I did 5 years ago.

However, if you do decide to be a mom with PD make sure you know that you are NOT alone! that you have other women like me to guide and support you and know that it will be the greatest adventure in your life as well as the most rewarding. Plus, for me my child has served as the driving force for wanting to keep fighting and moving and never give up. During my darkest hours, I have relied on her love and smile to give me strength to hang on for one more day till the storm passed. In life there are many substitutions for things,  but there will never be a substitution for a mother’s love!

Happy Mother’s Day to all the beautiful women out there..cherish your kids, they truly are a gift from GOD!

@copyright 2018

all rights reserved by Maria De Leon MD