Thursday, February 28, 2019

Rare Disease Day: Show Your Stripes




The last day of every February is dedicated to Rare Disease Day.  I have to admit, having myalgic encephalomyelitis (ME), I unknowingly thought that this day may be related to my illness.  However, the more I thought about it, the more I realized that my disease isn’t rare, 17-24 million people around the world have this disease.  It’s not rare at all, it’s just ignored by most (nearly all) in the medical field.  But that’s another story…

Today is Rare Disease Day; a day that cannot be given enough attention.  This day is dedicated to raising awareness among the general public, policy makers, public authorities, industry representatives, researchers, and healthcare professionals about rare diseases. 

Okay, so let's start with the basics.  What's considered a rare disease? How rare is rare??  In researching it just a bit I discovered that it’s defined a bit differently depending upon the source you rely on but generally speaking in Europe a disease or disorder is defined as rare when it affects fewer than 1 in 2000 people.  In the United States, it’s defined as rare when it affects fewer than 200,000 Americans at any given time. There are 7000+ rare diseases.  A shocking 50% of them affect children.  Ouch!

Here's one of the real challenges with these rare diseases. Unfortunately, the relatively common symptoms of many of them can hide the actual underlying rare disease, leading to misdiagnosis and delaying treatment.  The fact that there often is no existing effective cure then adds to the high level of pain and suffering endured by these patients and their families.

Being a bit new to this day, this is just an outsider's guess but I imagine another one of their big challenges is gaining the attention of those that can help fund, research for a cure, and also provide appropriate medical care and support for these diseases.  I do appreciate the counterargument that we have diseases that affect much larger population pools and therefore those diseases should be the focus – there are thousands of diseases much more pervasive.  One could argue though that many of those diseases have global, national, and state level organizations that support and fund them to a large degree, especially relatively speaking.  While I certainly wouldn’t ever advocate taking any money dedicated to curing these diseases, I think it is worth noting this fact.  I say this even as someone with ME; if my disease was given funding, I certainly wouldn’t want it taken away, but I do also see the need to dedicate funds where funding can’t be as easily be found from other sources.  Lastly, when you see the hardships and challenges up close and personal of someone who has a rare disease you can’t help but advocate for more, for better, and for a cure them. 
  
The great news is the enormous progress is being made every day.  The ongoing implementation of a stronger, more comprehensive approach to rare diseases has led to the development of more robust public health policies.  In addition, gains are being made with the increase of international cooperation in the field of clinical and scientific research as well as the sharing of scientific knowledge about all rare diseases, not only the most “recurrent” ones.  Both of these advances have led to the development of new diagnostic and therapeutic procedures.  But much more is needed to eradicate these diseases from our population.

So back to Rare Disease Day…  What happens on this day?  Well, the campaign started as a European event and has progressively become a global event, with the United States joining in 2009 and participation in over 90 countries all over the world in both 2017 and 2018.  Hundreds of cities are focused on taking part in this day today, hopefully expanding the reach of this focus even further and increasing worldwide awareness of these conditions and the need for additional attention to them. 

If you are interested in learning more about the types of diseases that fall under this category, here is a list of rare diseases.  Many of these diseases have their own foundations; there are also many foundations that assist patients with a variety of such diseases.  For example, one such foundation is the Leukemia and Lymphoma Society.  They provide financial assistance directly to patients in need, helping to cover out-of-pocket costs.  Please consider donating to this organization or one of the many related to the diseases on the list. They would appreciate any dollar you can spare.


Saturday, February 23, 2019

#DisabledPeopleAreHot


  

So I saw this hashtag and thought - wow, how cool in so many ways!

First, it really highlights something I’ve found to be true with absolutely everyone I’ve ever met.  Whether you quickly notice it or learn it through digging a bit deeper into a conversation with someone, there is something simply beautiful, inspiring, motivating, and well, hot about everyone.   

It may sound simplistic to say or notice, but I’m constantly amazed at how no two people are alike.  Like snowflakes falling from the sky, every single person is unique in their own special way.   

And... this is why tweets with this all-inclusive disability hashtag held my attention for over an hour.  First, because it aligns with my belief that everyone is special in their own way.  And second because of the fun, confidence, and pride that is so prominent in the tweets and pics.

Here’s just a splash of some of these fun tweets.  I encourage you to check more of them out yourself, or, even join in the fun yourself!

#DisabledPeopleAreHot , worthy, strong, sexy, attractive, desirable etc..”

#DisabledPeopleAreHot Oh, YES! We most certainly are!”

“Into this hashtag. Forever feelin’ myself. #DisabledPeopleAreHot”

“I mean, facts are facts #DisabledPeopleAreHot”

“Thanks for inspiring me to post a pic where I feel strong, powerful, and hot. #DisabledPeopleAreHot”

“I’m in a chair but still pulling off this crop top💓

“I'm chronically ill and fabulous #DisabledPeopleAreHot”

“I'll join this hashtag conversation! #DisabledPeopleAreHot. Love who you are. And be confident. Boom.”

“Da** skippy... #DisabledPeopleAreHot

“I hate posting selfies but da** my fellow hotties on #DisabledPeopleAreHot are giving me so much life.”

“#DisabledPeopleAreHot is undeniably the best hashtag ever created. Like, I read it and my confidence immediately skyrocketed”

I joined in on the fun and posted a purple hair pic of myself – a little fun from home last Halloween!


The self-love, fun, and humor displayed in these tweets and pics were all so wonderful to see.   All too often we are so hard on ourselves - for the seen and unseen parts of our illness.   To me this hashtag represents the letting go of all of that and having some fun beyond the seriousness that is pervasive in our lives.   


#DisabledPeopleAreHot – my new favorite hashtag!  If you haven’t already joined the fun and feel comfortable doing so, let’s keep this hashtag going!

Saturday, February 16, 2019

Me. ME. Me!




This is ME; this is me now.  

ME (Myalgic Encephalomyelitis) is a multi-system disease that causes dysfunction of the neurological, immune, endocrine, and energy metabolism systems.  

Me, I'm a lady that loves her family, friends, and has a wild sense of adventure. 

Just as ME is just one part of me, extreme exhaustion is just one symptom of ME.

A thousand words is not enough to describes the myriad of symptoms of ME

A million more would be needed to describe what a chronic illness does to your job, family, friendships, and life.

Yet there is so much more to me than even all that - I still Iive, love, dream, play, learn, fail, fall, succeed... 

I’ve worked hard to be me, to get where I am in life; I am proud of me.  

However, my priorities and realities are forever altered and changed by ME; perhaps a shake-up was needed though.

I wish I had the courage to do it before ME forced it upon me, but I am glad I now have the courage to do it for me.

I'm pursuing dreams, goals, and talents I never knew I had.

Though to be honest, I've also lost activities, hobbies, and friends I cherished dearly.  

I want to hate ME for that and all it does to me daily, and I do, but it has also made me fearless, relentless, and stronger.  

ME....  it's clearly a force to be reckoned with.

Ironically though you may never have seen ME, even though you see me often. 
  
Its symptoms are in my face daily; yet I put on a “face” for you.

I hide ME because it’s me that is important for you to know, that is worth you knowing. 

Perhaps I should let ME be on display each day: I see many advantages to letting people see ME

Instead though I choose to hide ME and only show you me

More needs to be done to get rid of ME before it gets the best of me.

I actively do what I can, I share ME me publicly in podcasts, videos, and articles to increase awareness, to let you read about me, to see me, and to hear from me.

But with friends and family, I try to keep ME all to myself; I am not ashamed of ME, it’s just that I really want you to know me.

One thing never changes:  ME often steals the spotlight in my life; ME may even often have the control of it at times.

However, underneath all the layers of ME, I know that it's still me that matters the most;

I will continue to rise above ME; I refuse to let ME overtake me.

From me to you... and all of you with ME.   We've got this... we really do, even when it seems like we don’t.  We do.





Saturday, February 9, 2019

A Valentine for You



Valentine’s Day... bouquets of roses, boxes of chocolates, romantic cards.....   Love is in the air and happiness seems to be oozing from every place you go and everywhere you look.  It’s in the stores, on Facebook, televisions shows.... it’s EVERYWHERE!

All while you may be at home for days on end.  Possibly feeling isolated, alone, and lonely.  Watching these couples, these scenes on television, and perhaps longing for someone to look at you the way these couples gaze into each other’s eyes.

Life with a chronic illness and Valentine’s day.  It can mean a day filled with loving moments, that absolutely nothing is different that day for you or it can be a day that increases your feelings of isolation and loneliness. 

If you are “coupled” it may mean an intimate evening with your loved one.  Whether that’s a fancy dinner, jewelry, chocolates, a movie night, or just some quality time together, it’s often a night to remember.

Or… since your illness doesn’t care that it’s Valentine’s day, it could decide to give you the flare of a lifetime.  That’s the thing with chronic illnesses – they don’t discriminate.  They don’t care if it’s your wedding day, your birthday, or an ordinary day.  Its wrath can come at any moment.

If you are not in a relationship, Valentine’s day can take any isolation you are already feeling to new levels.  You may feel even more alone than ever.  It seems that all that love in the air almost becomes mocking or suffocating when you are alone.  In some ways, this day of love and romance is much like our chronic illness, it can isolate us quite a bit, bringing on feeling of loneliness, possibly more than we already may be feeling.

So, what do we do??   The first thing I’ve found helpful to remember, is that it’s just a day.  And like any other day, it’s what you make of it.  If you know you are likely to feel bouts of loneliness and sadness on Valentine’s day, arm yourself ahead of time with a self-care kit.  Splurge a bit!  Treat yourself to a massage, set aside some time for meditation and really dig deep that day to reach inner peace or perhaps practice some gentle yoga to re-energize yourself a bit.  Or, dedicate some extra time with a good book you have been looking forward to reading (or listening to!).  Whatever are you go-to comfort items, keep them handy if you think Valentine’s day may be a particularly rough day for you. Perhaps even have these items handy if you have plans, just in case that unexpected relapse pays you an untimely visit.

And most of all, don’t forget that any love that you will find outside of your house is not as important as making sure you have self-love and that you are taking care of yourself.  While Valentine’s Day has been commercialized into a day all about couples and gifts from others, don’t forget about the most important gift.  The gift you can give yourself that day and every day.  All the self-care, love, and attention you deserve - take the day to pamper yourself in big or small ways because if anyone deserves it, it’s you.  You have come through day after day stronger and ready for the next.   Take a moment and let Valentines just be all about you.  Whether that’s you with your loved one or you treating yourself to a special day of self-love, special treats, and comfort items.  Pamper the heck out of yourself!

Happy Valentine’s Day to you!



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Saturday, February 2, 2019

Invisible or Visible: There’s No Wrong Choice


Depending on the situation or who we are interacting with, we may portray ourselves in different ways.   We often strive to be the person we need to be to achieve optimal success in the moment. 

In some situations, we may find ourselves to be the planner, the delegator or leader.  In other situations, perhaps in areas or with people we are less familiar with, we may find ourselves being more introverted, a follower, or an observer.   All are essential roles and equally valuable.

Life with a chronic illness is much the same for a variety of different reasons.  Each day, each encounter we have, we have the opportunity to choose what version of ourselves we wish to show.  While there is no shame in showing our symptoms to the outside world, many of us choose to make them as invisible as possible when we leave the confines of our home.  For us though, that means more than just putting on a smiling face. It often comes at a cost.   Whether we choose to bear that cost is something for each of us to decide. 

If we choose to conceal it though, I think we need to be careful to remember why we are doing so.   We shouldn’t be ashamed of that side of ourselves or let it make us feel less than in any way because neither of those things are true.  None of us chose our illness; we have no reason to be embarrassed or ashamed.  It is just what life unfortunately dished out us. 

All that said, it really comes down to what you are comfortable with.  If you want to share yourself, all of yourself, with the world, go bravely and boldly!  If you want to keep parts of your illness to yourself, you have every right in the world to do so.  It’s your body and your decision.  Everyone needs to do what feels right to them – there is no “wrong” here.  There is only what is right for you.


So whatever version of yourself you choose to share with the world, share it with pride and confidence.  If you bare all or share less, it’s what inside that matters the most.  And on the inside, you are still the amazingly strong and resilient person that is overcoming challenge after challenge.  I once read that it’s the people who have been through the most difficult of times that emerge with hearts as warm as gold and cores made of fire.  How true is that statement!  That is us!  And that’s the kind of strength we all should be proud of.


Note:  If you are interested in self-help books on how to be the best version of you and how to optimally express that, there's a great new (2019!) interactive book out that is quite helpful - and freeing!  If interested, check out Best Self, Be You, Only Better, by Mike Bayer.  For ease of reading, you may want to check out the audio version of this book!


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