Hello friends, acquaintances, and outright strangers of the internet,
I have a HUGE announcement to make – in fact, the biggest announcement of my LIFE. But before we get to that, I would like to preface this by stating that I was very much on the fence about sharing this information. Not because I don’t trust y’all, but rather because the outcome is not guaranteed, and so what if I made this announcement; got everyone (including myself!) all hyped up for huge changes but then at the end of the day, the best I can hope for is a return to the status quo? Well, obviously, here I am. I am deciding to take a leap of faith both in sharing this with you, and in asking for your help; the latter of which I will get to in a moment.
Note: this intro stuff is LONG and I am aware of that. I think it’s helpful for context, but if you would like to skip it, you may pick up reading again where you see a ⚡⚡⚡.
First, a refresher: as you may or may not know/remember, I have Sickle Cell Anemia. I won’t get very much into the science of this genetic disease, but I will tell you that it’s the reason I complain about being in pain every day, or why I mention being tired so often; why all of my blogs have ‘munhealth’ tags by default, and just generally why I’m absent from a lot of my blogs at any given moment; to speak nothing of why my activity is basically always spotty.
As Sickle Cell is a genetic disability, this means I was born with this disease. Even as a kid, I remember being unable to keep up with my friends while playing tag and not understanding why. As a teenager, I had a basic understanding of my disease, but I was fortunate in that I was healthy enough to pretend it didn’t exist unless I was sick and stuck at home for a week. College was almost the same, until my health took a nosedive and ultimately forced me to drop out; losing my honors’ certification along with my bachelor’s degree.
It’s hard to believe, but that was back in 2013 – over seven years ago. I have been living at home – stagnant – with my brother & parents ever since. Or perhaps even stagnant isn’t the right word, as there are many reasons one might say that I worsened over years. My doctors certainly seem to feel this way, and it’s because I visited one that my life is about to change forever.
Let’s be clear, here: that visit was not a good OR fun one. I don’t remember the details, so I’ll spare you the padding, but I remember–vividly–being on the phone with my partner, Jon, and crying–SOBBING–about how much I hated having my life depend on doctors, and [the U.S.’] healthcare system, and how exhausted I was with people not giving a damn about me but having the authority to make life-altering decisions for me. I told Jon that I could not live the rest of my life like this–I couldn’t.
And I’ll be damned, this man found a way to make sure that I wouldn’t have to.
If you’ve been roleplaying with me at all for the past three or so years, then you know that I’ve been periodically going upstate to Maryland. Well, I’m finally here to tell you that I wasn’t just in Maryland for sheets & giggles, but visiting the National Institutes of Health (NIH) in pursuit of joining their gene therapy study, which seeks to find a viable way to cure sickle cell disease by editing the DNA of the patient’s own stem cells. And after three years of back-and-forth visiting, consulting, testing, hospitalization, testing again, making product, etc., I can finally say, with confidence, that I am going to be doing the gene therapy transplant.
q: so she’s gonna be cured?!?!
a: PROBABLY!!! (most patients that have gone through the program have seen a significant decrease in or complete annihilation of their crises; a few saw no change; one man who had pre-existing complications unfortunately passed away.)
Obviously this is – THE HUGEST fuckin’ news. I am so, SO excited to finally be at this step, but of course very nervous because I am stepping wholly into the unknown. I don’t know what my future will look like once I finish, or even while I’m inpatient. To be honest, I was trying SO HARD to get as much of my RP wishlist & accounts done before I left town so I could at least have some time playing with them before my time became spotty and unpredictable. But! Given the circumstances, I do hope you all can forgive me.
Even if there are a lot of unknowns coming up, there are some things I can say for certain:
I will fly to Maryland on Monday, January 18th, 2021
The following Sunday, January 24th, I will be admitted for pre-transplant stuff
Transplant Day aka my “New Birthday” is planned for Tuesday, February 16, 2021
I can expect to stay in the hospital for 6-8 weeks; all depends on how my body responds to chemotherapy.
Upon discharge, I’ll be expected to remain in the surrounding Bethesda/DC area for 4 months or so.
This is, of course, where I get to my request for aid.
Through Colpitts, the NIH will pay for: flights to & from DC, travel to & from DCA both ways, a per diem for me (any day I’m outpatient) + my visitor(s) (all days). This is fantastic, but the money itself has restrictions on what it can be spent on (for example, we can’t use it to rent a car “since we have access to a shuttle” – but as an immunocompromised patient, the LAST thing I want to do is shuttle anywhere right now); and it won’t even be available until the last minute, which… is a problem, because we have quite a few things we need to purchase on the front-end or ahead of time. To best illustrate this issue, Jon and I have created a spreadsheet that lays out what our needs are and why. You’ll be able to find a link (along with other important links) below
Look: I am just over two weeks away from traveling and I still can’t believe this is real sometimes. And I am so grateful for those who have uplifted me along the way – even you guys on the dash who often didn’t have the full context of what I was going through. I am SO happy to finally be able to share what I am experiencing with you; and whether you donate, reblog, or even just stop at reading all of this: thank you. Thank you, so, so much. I appreciate all of your love and support.
