Jonnie's Lupus is out of Control

Update (1/8/18): I guess it's been a while, huh? Generally, I consider that to be a good thing. I'd been doing alright. Getting by, you know? But things change, and it turns out, I'm once again much more sick than I thought I was, and things have reached a new level of urgency as I make plans for admission to the hospital for treatment. In advance of my upcoming hospital adventure in Lupus, I've made the decision to appeal to the gofundme gods once again. For the past few months, I've been able to skate by without help by picking up odd jobs when I'm able. Being SUPER frugal has also helped. Unfortunately, a surprise bout of extreme illness has had me mostly homebound since Thanksgiving, and my financial options are running out. With the hospitalization looming, I need to ask for help to ensure I can keep my bills paid while we sort this out. If you feel so inclined, $5 from a few friends would go a long way in keeping my phone on, my car insured, and my supplements on hand. I'm not starting a whole new gofundme page for this, as it's just another page in my ongoing lupus crap. I was able to let the fundraiser sit dormant for the past 6+ months, but it's time to bring it back. My hope is to raise ~$300 fairly quickly, which will cover the imminent issues. So, yeah. If you've got a spare $5, I could definitely use it, and I humbly thank you and accept. You haven't bought me a beer in almost two years, so really, this is a deal! INFO UPDATE: It's the weekend, and it's still Lupus. I'm having a quiet day, and I'm exhausted, but relishing my ability to stay awake and appreciate that today was just a day. Thanks for checking in! Update #1 Hi. I'm Jonnie. A few weeks ago, I was hard at work, doing what I love as the Event Director at Vermont Comic Con. Things have really changed since then, thanks to a nasty bout of the Lupus, which led to a bad drug interaction, which has led to intermittent partial blindness, kidney disease, and a whole mess of issues throughout pretty much my entire body.  I'd like to thank everyone who has taken the time to share and contribute to my campaign so far. As this situation unfolds, I will do my best to keep this page updated so that you can see how your contribution helps. I hope to be able to thank each of you individually soon, but for right now, my cognitive skills are strained at the simplest of tasks. Please know that I see you all, and your support warms my heart. For today, my update is copied from my facebook page, for the sake of conserving energy:   Remember the time that I had a lupus flare up, resulting in multiple drug poisonings which taxed my kidneys too hard, diminished my platelets, havocked my white cells, raised my liver enzymes, caused me to gain twenty pounds literally over night, put me in the hospital for a week, and turned my brain into lukewarm Jello so now they want to put me on chemo because I have a genetic anomaly which disqualifies me to an entire sector of eligible drugs to treat my condition? Well, the other day, I suddenly (and temporarily) lost part of the vision in my left eye for about an hour. My vision has been blurry and out of focus ever since. My doctor made a referral to an optometrist who called me personally and insisted that I take the earliest available appointment today. It turns out that vision loss is a side effect of two of the drugs I was misprescribed. Insurances and conditions were verified, and I took to task to make it happen. After making arrangements to get picked up and driven to Bellefonte to spend the night on my friends couch so that we could all wake up and get me to my appointment to see if I'm going blind (yes, I'm still punny), I sat in a waiting room for an hour. Then, I was informed that they don't take my insurance at this doctor. I was offered the generous option to pay out of pocket, which I politely declined. Then, I left, and had to have my ride drive me home after a wasted morning spending money I don't have on something which yielded absolutely nothing, all while inconveniencing everyone around me. And I still may be losing my vision. So, really, what I'm saying is, today has pretty much sucked. This situation is a costly endeavor. If you would, please consider sharing my fundraising campaign. Futility is expensive, and hope is even moreso... And I could really, really use the help right now. ORIGINAL POST: So, here we are, again.  For the past ~15 years, I have been dealing with issues and complications stemming from Systemic Lupus. Most of the time, my symptoms have remained manageable, with some joint pain, rashes, and a host of generally inconvenient challenges.  Recently, I was treated in the E.R. for a low-grade infection in tandem with a Lupus flare. I was treated with two different antibiotics...one of which was later discovered to CAUSE Lupus symptoms. Not realizing that I was taking a sulfa-based drug (Which is BAD for Lupus patients. Like, BAD.), I lost my will to eat or drink anything at all. Fevers, chills, hives, dizziness, nausea, vomitting...these are the things which consumed my life for about a week. Of course, I ended up back in the Emergency Room and had every imaginable test/scan they could schedule. The good news is, I don't have any blood clots.  I was admitted to the hospital, where I spent about a week. In that time, I have had a ridiculous number of specialists visit me with news that my platelets are low, my white count is low, there are red cells where there shouldn't be red cells, my creatinine levels and kidney output is askew (They're calling it "Kidney Disease", I'm calling it "How about we slow the hell down and let my body detox a little bit before making any rash decisions?!"), and my liver enzymes are elevated.  When I was admitted, I weighed 113 pounds. Today, I'm so pumped full of steroids and saline, I'm over 130. I have no clothes to fit me, and I'm living in my male roommates surgical scrubs. This has all been over the course of the past two weeks.  To address my dietary issues, the hospital sent me a shrink. They started me on some gnarly antidepressant that I was to take each night before bed. For the past week, I've basically felt like I've been living a bad trip. I only sleep for a few hours a night, and everything in my world was becoming a grey hole. My eyes have trouble focusing, my brain is super cloudy, and the simplest everyday tasks feel make me feel as though someone should be waiting at the Finish Line with streamers and party whistles.  Like, I know you guys have pretty much all seen 'Stranger Things' at this point. No joke, I've been living in the Upside Down.  It turns out that this drug is also counter-indicative for Lupus patients. So, I've been poisoned now; twice. Now I have blurry vision and tremors.  Awesome.  The doctors are pushing for a kidney biopsy to determine the next steps in my care. Both specialists I've seen so far are pushing for me to begin a maintenance drug called Cellcept, which is basically chemo pills. Possible side effects include death. So, we're going to do EVERYTHING we can to avoid that outcome.  Starting with this fund. I'm not able to drive right now, and if I were, you wouldn't want me on the road. Trust me.  I have A LOT of appointments, with each appointment snowballing into 2-3 more appointments. I live out of the way of everything, so an average day of picking me up and hauling me around locally costs someone ~100 miles on their car.  As we pick this thing apart, I'm going to have trips to Hershey, Danville, and possibly further, with overnights and food expenses. These are more like, ~200-~500 mile round trips. I need to be able to reimburse my friends and family for fuel, time taken from work, food, etc. I also need to cover my personal expenses (phone, insurance, food, lodging, clothes that fit me) until this is sorted out.  Please help if you can. I know a lot of you would be here with bells on to give me rides and help me through this...if you weren't all, like, thousands of miles away.  In lieu of your physical presence, in this case, I'll gladly shut up and take your money. SPECIAL CALL FOR ARTIST/MAKER/CELEB/BUSINESS OWNER SUPPORT: If you have any interest in creating/contributing any commission work, fundraising efforts, tee shirts, autograph swag/etc for auction, I am totally open to ideas for any/all of the above.

Donations (0)

  • Joseph Sarmento 
    • $32 
    • 20 mos
  • Sketch MacQuinor 
    • $25 
    • 20 mos
  • Joseph Sarmento 
    • $20 
    • 20 mos
  • Mercedes Paulino 
    • $50 
    • 21 mos
  • Gillian Caruso 
    • $25 
    • 21 mos

Organizer 

Jonnie Gummo 
Organizer
Tyrone, PA
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