Friday, December 31, 2021

Welcome to the New Float Like a Buttahfly Site!

If you're new to Float Like a Buttahfly, welcome! If you've been with me for a while and are here to check out the changes, welcome back! Either way, I'm so glad to have you here with me.

Take a look around - you'll find a bit of my history, experience, and insight, and some of what I've gathered from other advocates and organizations that I think you might find helpful:

    • ABOUT ME - Here's a quick intro to who I am, what led me here, and where I'm hoping to go from here. I hope you'll join me!
    • WHY BUTTAHFLY? - We all know that butterflies symbolize transformation. Here's where I explain a bit of my own transformation, as well as why I spell it this way.
    • WHAT'S WRONG? - The simple answer: a lot! Here, I explain a bit more about my history with chronic illness, and the myriad conditions that are affecting me.
    • BEFORE THE BLOG - Float Like a Buttahfly began as a simple personal blog back in 2010. It's grown a lot since then, but here I share what led me to start it in the first place.
    • BLOG - Here you'll find everything I've written for the blog, from that first post through June 2021. Since then, most of my writing has gone directly to my column at Sarcoidosis News (see below). When I write about anything else that's not for the column, I'll do that here.
    • COLUMN - In 2021, I was invited to bring my thoughts and experience to a new column at Sarcoidosis News, the web's leading resource for news, information, and daily updates for sarcoidosis patients and caregivers. Here, I'll share links to the column itself and each individual piece I've published.
    • SARC - Sarcoidosis ❄ Advocacy ❄ Resource ❄ Connection Here, I'm bringing together information and activities from advocates and organizations around the world that may be of interest to the sarcoidosis community. 
      (I'm planning to put together similar pages for other conditions, too, but this abbreviation/acronym worked so well, I didn't want to wait! 😉)
    • WHAT'S HAPPENING? - There's always something going on for the chronic illness community. Here, you'll find info about upcoming webinars, conferences, support groups, and more.
    • GET INVOLVED - Here, you'll find some great opportunities to share your story to make a difference, and even get paid for (some of) the opportunities!
                    If there's something you'd like me to add or something you'd like to know more about, you can always reach me at FloatLikeAButtahfly@gmail.com, or find me on FacebookInstagram, or Twitter

                    ~🦋 Kerry
                    Float Like a Buttahfly

                    Saturday, June 26, 2021

                    One Small Step

                    Like so many others in the chronic illness community, I've been super anxious about going anywhere in public. Especially as everything is opening & mask mandates are dropped (prematurely, if you ask me), there's the legitimate fear that the unmasked all around us may be unvaccinated, exposed, even carriers of the coronavirus, and we the immunocompromised are at even greater risk.

                    At the same time, there's the hope & the longing to get back out into the world. We don't want to live like this, as hermits, going nowhere but to our medical appointments. We want to see our loved ones, our friends, our families. We want to go out, to socialize, to run errands, to just … be.

                    Thursday, February 11, 2021

                    Vaccine Variables

                    Graphic shows NY/DOH logo, with the Q: When should I get the vaccine? and the A: As soon as it's available to you. The DoH will continue to share information on where and when New Yorkers can get the vaccine as more vaccine doses become available.
                    A few days ago, they announced that in NY, people with a list of conditions would be eligible to receive the vaccine as of February15. I meet a few of those criteria, so I’m certainly eligible.  My rheumatologist said I should definitely get the vaccine, given that I'm immunocompromised and high risk for not only contracting the virus, but for a more severe outcome if I do.  So I was excited about the announcement, thinking I could get my first dose next week, and be one step closer to feeling safe.

                    As I started looking up where I could get the shot and how I could schedule the appointment, I came across an FAQ page that included the question "Are there any reasons a person should not get vaccinated?" As expected (and as is the case with most medications), this was broken down to the “you should not get vaccinated if …” list, and the “consult with your doctor if …” list.  Included in that second list, I saw “people who have been treated with … intravenous immunoglobulin (IVIG) in the past 90 days.”  Yikes!  I was looking all of this up from the #infusion center; I was literally getting my IVIG treatment while reading that my IVIG treatment might keep me from getting the vaccine.  I kinda freaked out a bit.

                    Monday, October 19, 2020

                    Overwhelmed

                    Photo of my hand, writing on a spiral bound journal; next to it, a coffee cup with a peace sign on it.
                    This is not what I wanted to write.

                    I was actually planning to write a blog this week (yes, I know, it’s been over a year – I’ve wanted to, a lot, but … well … life gets in the way).  But this week was actually 5 years since I was first (finally) diagnosed with sarcoidosis, and I wanted to write about what that diagnosis has done for me, and how much my life has changed since then.

                    But alas, life gets in the way.
                    More accurately, #SarcLife gets in the way.

                    While people around the world have been hunkering down at varying levels due to the pandemic, those of us with chronic illnesses like sarcoidosis, arthritis, and thousands more have had to take more drastic measures due to our compromised immunity and higher risk for not only contracting COVID-19, but more severe outcomes if we do.  My primary doctor’s way of putting it to me: “the only thing we have right now is extreme social distancing [and masks, and hygiene], and for you, that means extra extreme.”  For many of us, in addition to avoiding social situations and switching to shopping online whenever possible, that also meant postponing non-emergency medical appointments.  That’s kind of a tricky thing, though, because the main way many issues stay non-emergency is that we maintain routine monitoring & care.  Additionally, it’s one thing when these issues get held off for a month or two (like we initially thought corona would last); when it’s looking more like a year or more, that is really too long to wait.

                    Wednesday, October 2, 2019

                    Patients Need Protections in Mid-Year Formulary Bill (A2849)

                    For most of my life, I was an overachiever: I excelled in school, worked multiple jobs, and volunteered to help others as often as possible.  But in my early 30s, I was forced to slow down.  I began to experience a mysterious combination of symptoms that no one could explain: pain from head to toe, debilitating fatigue, weakness, dizziness, nausea, and later, severe joint swelling and a variety of skin reactions.  It took 8 years for doctors to figure out what was going on, with countless tests, misdiagnoses, and treatments that did not work along the way. Eventually I was diagnosed with a rare inflammatory disease called sarcoidosis.

                    At its worst, this condition left me completely incapacitated: the arthritis in my hands, elbows, back, hips, knees, ankles, and feet was so severe that I could hardly move. I needed support to stand, shower, and dress; at times I couldn’t even hold a phone in my hand to ask for help. When we finally found the right treatment, my world changed. Literally overnight, there was a noticeable difference, and I continued to improve for weeks and months. There is no cure for sarcoidosis, but thanks to my miracle drug I’m able to participate in, and contribute to, my life and my community.
                    My miracle drug