Rare Disease Day 2019

Tomorrow, February 28, 2019 is Rare Disease Day on Capitol Hill, at the NIH, (National Institute of Health).

My intention to attend, was thwarted by both finances and physical limitations.  At this point, however, I’m accustomed to missing these events, and continue to hope that one day I’ll be able to attend.

Since October of 2018, my health began to spiral downward again, and found two culprits, Mixed Connective Tissue Disease and thyroid disease.  However, genetics are showing possible autoinflammatory disease.

Eosinophilic Associated Disease, (entire GI tract), bladder and lungs, Gastroparesis, have been front in center in my life, the past 4.5 years.  Dealing with cystitis, endometriosis, PCOS, insomnia and PTSD, were other conditions I’ve been dealing with, but were manageable.

its an interesting word, “manageable”, right?  For example, I always thought asthma was, “managable”, until I experienced unmanageable asthma.  I guess it’s why you’ll hear, on some drug ads, “moderate to severe”, or, “unmanageable symptoms”, for certain illnesses.

It seems odd that someone with Crohn’s or Lupus, can lead full, active lives, and others who are stopped, completely disabled but several, severe illnesses, most of which are rare, complex, unpredictable and debilitating

Why do these things happen?

If only I had the answers…  I’ve led a healthy lifestyle, active, athlete, martial artist, yogi, traveler, photographer.  I’ve been a good, caring and generous person. Not perfect, by any means, but, I’ve done the best I can.

Mostly my days pass, alone, quiet, only my dog and television for company.  I continue to do what I can, to take care of myself, despite everything.  If I think of everything I’ve lost, of everything I’ve had to give up?  I’d crumble.  Sometimes I will break down, cry, but now, I mostly accept my reality.

We dont get to choose what will happen in life, but we can choose how to navigate.  Most people won’t be able to see, with clarity, how we do this, as we contend with brain fog, extreme fatigue and systemic inflammation, that will often affect our brain function.

Writing to my Senator, Senator Kamala Harris, who began her career in Oakland California.  As a woman of mixed race, raised in my beloved, Bay Area, I hope she will do what she can, to best represent those of us, with rare disease.  I’ve asked her to attend the event at the NIH, to hear our voice, our daily struggles.

I will find my power, in my moment of feeling powerless

Encouraging myself through constant battle