To help celebrate the end of another year, this holiday season I am participating in the Foundation for Sarcoidosis Research’s (FSR) efforts towards Stopping Sarcoidosis One Snowflake at a Time. I am joining the movement to help accelerate groundbreaking research and support those impacted by this disease and I need you to join me!
But first, my “Snowflake Story” …
Last summer after 2.5+ years of flare after flare, my sarcoidosis finally stabilized for the first time. But that wasn’t before showing signs that it might want to become systemic (I have sarc-related issues in my left eye and left kidney). I think there is a common misconception that if your sarcoidosis goes into “remission,” you instantly feel fine all the time and life goes back to normal. What I think we overlook is that while there is definitely great improvement, there’s still a lot of diligence required on the part of the patient to manage lifestyle and in turn the disease with the hope that medication won’t be necessary in the future.
Highlights of my story include: * An interesting (and fairly quick, from what I’ve been told — two months) arrival at diagnosis, from what I thought was a late season flu to the suspicion of Lyme disease to a possible blood clot somewhere in my body to an ER visit and a dismissive doctor to a chest CT showing lung nodules to a PET scan to a lung biopsy to being told I most likely had lymphoma. * An introduction to FSR just 10 days after my biopsy surgery, at an event where a presenter shared a diagnosis story almost identical to mine and a patient I met tried to reassure me that before too long the biopsy scar at the base of my neck wouldn’t even be visible. I remember thinking I couldn’t care less what this looks like on the outside; my greatest worry was what it was doing on the inside where I couldn’t see it. * Medical gaslighting, shaming, and abandonment. * I am a pretty good self advocate and navigator of the healthcare system. I cannot imagine what this experience can be like for someone who doesn’t understand the healthcare system and how to research and identify who the best doctor for this disease is for them and for someone who isn’t comfortable being a squeaky wheel and doesn’t recognize medical gaslighting when it’s happening. * Trying to explain to people what sarcoidosis is and being met with, “Well, at least it’s not cancer.” So true, but there’s no cure and it’s pretty scary (though I am so encouraged by how much progress there’s been with pharmaceutical research and development recently). And, of course, I am very fortunate to be as healthy as I am.
You can learn more about me on Episode 70 of the Sarc Fighter Podcast with John Carlin: https://www.podbean.com/media/share/pb-bca6a-12c0a52.
By supporting my fundraising and awareness efforts, you will be investing in the future for those impacted by sarcoidosis. The sarcoidosis community and I greatly appreciate your generosity and support!
I hope you will join me and help achieve our goals by:
1. Making a donation to my fundraising page.
2. Raise awareness by posting your #SnowflakeStory on social media and sharing the following:
* How has sarcoidosis impacted your life? * What has living with sarcoidosis meant for you? * What is your wish for all those impacted by this disease?
3. Share this page link with your friends and family on social media and invite them to share their #SnowflakeStory as a supporter of someone impacted by sarcoidosis.
Together, we can create a blizzard towards our efforts in Stopping Sarcoidosis One Snowflake at a Time!
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