Denise G. - New Orleans, LA - 2019
Around Thanksgiving, I love how conversations naturally turn to gratitude. Finding gratitude in difficult things is a key component to resilience, but also an important way to ground yourself.
In my new role as Interim Director, I’ve received a new-to-me-laptop. You’ll see in the photo it is currently speckled with blood, smeared with lotion, and sprinkled in flakes. When I noticed this, immediately a negative thought cascade unfolded. (Maybe you know how this goes?) I shook it off and said, “Well, of course.”
This time of year is the hardest for my skin. The cold always seems to strike before I get my gloves out of storage. I stand in CVS (crabbily) calculating the skyrocketing price per Bandaid, which matters when some days I need 8 of them between my 10 fingers ($2.00/day). The wind adds another element to my general skin condition—raw. I need thicker creams, which makes exfoliation harder. Add to that travel by car or plane (hello, dark seats and dry air) and it’s a perfect snow storm (of flakes). Well, of course it is!
But when I am able to hit pause and look for gratitude, I see my body as truly remarkable. We are reminded every day of our unbelievable ability to grow and transform. This is happening in a literal sense, and if we tune into it, we can grow and transform in a figurative sense. Well, of course we can!
I can honestly say this positive shift in my perspective was made possible only because of FIRST. It connects us to ways to make our disease more bearable, and offers us a chance to become part of a community who truly understand what we are going through. From there, we have a choice to look at our skin with gratitude for it’s unique ability to transform and communicate a truly exceptional cell turnover process. And if that’s too far, in the meantime, maybe we can start looking at our skin thinking “Well, of course!”
This information is provided as a service to patients and parents of patients who have ichthyosis. It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents. Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here. All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.