Jonnie's Lupus is out of Control
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.
Here's to lazy Sundays!
Several people have asked for a mailing address in order to send care packages, etc. which may help to offset my costs or help keep me occupied. I LOVE snailmail!!!
1012 Runville Road
Bellefonte, PA 16823
Thanks for checking in!
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.
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.
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.
Remember that time I promised you all some good news, then totally left you hanging?
Yeah, sorry about that. In many regards, life happens fast and just gets away from me. In many other ways, things often don't move at the pace I'd prefer or anticipate. Somewhere in the middle sits my recent negligence to social media.
So, about good news...
The kidney and bone marrow biopsies have been called off!
With the help of clean eating, proper supplements (thanks to YOU for helping to keep me in these things!), a ton of Prednisone, and LOTS of rest, my labs for the past few rounds have been AWESOME in many, many important ways. I'm not going to go into the science-ing of it all on here, but if you have an interest in renal or autoimmune health, feel free to message me and I'll tell you all about it. While I still have A LOT to worry about, knowing that my body is making blood cells and processing protein is kind of amazing.
I visited a rheumatologist at Penn State Hershey about two months ago. She diagnosed me with Lupus. I'm not quite sure what she thought I was there for, but the visit was an absolute waste of my money and time.
Since then, my primary and I have been working to taper me off of the ridiculously high dose of Prednisone safely. Prednisone is a magical corticosteroid which counters many autoimmune disorders while screwing up your sleep, depleting adrenal function and robbing bones of magnesium, all while depleting your body's ability to defend itself against pathogens. And, you can't just stop taking it. It has to be tapered down in low doses. If you think that sounds super fun, your're wrong. Recovery comes with a price, and I'll be paying it for a long time. Last week, I had to go in for a bone density scan at 35 years old. There are moments when I feel as though my bones may actually burst and shatter...and my hair is SOOO falling out because injury and insult are best buds.
But this is all OK, because apparently, there is a place called the Center for Lupus Excellence at UPMC in Pittsburgh, and I've officially been accepted as a patient with an appointment this December. Guys, I have NO idea what "Lupus Excellence" is, but if my doctor doesn't high-five me and call me "Dude", I'm out.
Really, this is an awesome thing. I've read some great things about the doctor I'm seeing, and I'm looking forward to getting the opinion of a team of doctors not attached to any of the entities involved in the whole repeatedly poisoning me with bad drugs thing.
In other news, I finally managed to buy a reliable, affordable, new-to-me vehicle a few weeks ago. I am no longer trapped under the thumb of a premium vehicle with premium-priced parts, and I can come and go as I please with a car in my own name!
I'm still planning ultimately to move to North Carolina to pursue health care, but I am no longer looking at it as an imminent "life or death" urgent need at the moment. I'm holding my breath for this UPMC appointment, which will determine where I go next and when.
So far, your contributions have fueled vehicles to haul me around to appointments, paid for supplements which I wholly believe have helped save my life, kept me fed with anti-biotic free organics, replaced most of my everyday health & beauty products with sulfate-free alternatives, covered the difference in glasses when my insurance covered a whopping $30, and generally have kept my life functioning. On my worst days, I'm still lucky to know some of the best people in the world. Seriously.
With several appointments and my first trip to Pittsburgh coming up, I humbly ask that you consider contributing and sharing my fundraiser link throughout your networks.
Lupus isn't a thing which just goes away, and every bit of good news comes with new side effects to combat.
You're all amazing, and I'm thankful for you.
This person and I have been friends for fifteen years. She's been there for me through diagnosis, brink-of-death flares, and all of the other life stuff which happens to people.
As we talked, and I explained what is happening to/in my body/life, she seemed surprised. I told her that I need more help than I can possibly ask for, because there are simply not enough hours in the day, nor dollars in the world, it seems.
I MUST relocate toward more up-to-date healthcare and doctors. I MUST continue to take these incredibly expensive, bad tasting supplements. I MUST buy a new car. I MUST replace everyday items with alternatives to avoid doing further damage to my kidneys, which can't be replaced if they go south.
Remember, if I don't control this, I won't be eligible for the transplant list. And the immediate goal is to keep me off of the chemo as a maintenence drug, and to keep my blood healthy enough to continue staving off the bone marrow biopsy.
I told her that I need my friends right now, in every possible way. She responded by telling me that she didn't realize how severe this Situation is, and that the people close to me are conditioned to just know that I'm strong and I always seem to rally against my illnesses.
I can't really express how different things are this time. I don't know if it's pride, or a complete lack of words. Where my own words and pleas fail me, I'm hoping that this perspective from my friend, Alice Teeple, may tell you the things that I can't. Alice recently spent a week with me, and took the time to write about the experience, complete with photographs ( http://missaliceteeple.com/blog/2016/8/20/the-girl-who-cried-wolf)
Please check out Alice's blog. Then, please consider sharing. The more eyes I get on this Situation, the more likely I am to find my way out of it.
Nathan and I have been from Pennsylvania to Vermont to Boston to Allentown to Asheville to Chapel Hill on a great quest to finish a job and to find the right combination of medical care, community, and accessible food within my parameters. It's safe to say that some things have been really, really bad, some things have been ok, some things have improved, and some things have been AWESOME.
Along the way, we've stayed with some of my FAVORITE people on the planet, and have enjoyed many unforeseen cosmic blessings. From guest rooms to hotel points to, to sulfate-free laundry detergent, to fresh bean salad and smoked salmon, this trip had everything!
When this whole lupus/drug poisoning debacle began, I insisted that I must hold out and remain well-enough to make it to Jim's wedding. Not only did I make it to the wedding, I also made it to UNC Medical to begin the very tedious process of re-establishing patienthood with their division of Rheumatology. My goal is to relocate from Pennsylvania to North Carolina ASAP so that I can officially take the next steps to rejoin the medical community which keeps up with research, and has yet to poison me.
I returned home to a literal mountain of Amazon boxes which I must soon begin unpacking. You see, I have the strangest gift registry, full of supplements, comfort aids, food prep items, and stuff that nobody wants to need, and my lovely friends (and their friends!) have been blowing their unused gift cards and credit to send me the things I need to stay on regimen.
To everyone who has hosted, helped, supported, and sent care packages throughout this endeavor, I THANK YOU, from the bottom of my faintly-beating, ginger heart.
I hope to be able to thank you each individually, in person. Till that day comes, know that the outpouring of love and support has been intensely humbling, and I am beyond grateful to have this amazing network of friends and supporters pulling for me to get through this sans biopsies and chemo.
Please keep sending those good vibes. While I still have a long way to go, I assure you, the good juju is working.
And, yes. I'm still raising money for supplies, co-pays, uncovered treatments, and the expenses of life as we continue to do the impossible by healing my kidneys sans aggressive treatment.
Please consider sharing my fundraiser page within your networks. If you've shared in the past, please think about doing so again. Every share reaches new possibilities, and I need options just as much as I need the money to pursue them.
***Read more or Contribute financially:
***Send me Probiotics, sun-protection, or something to keep me busy and/or fit over at amazon.com by following the link to my care package registry:
Nathan flew to Pennsylvania a few weeks ago to help facilitate my safe passage to Vermont to finish a project because I can't drive long distances by myself right now.
The trip from Florida to Pennsylvania was a 10+ hour ordeal, beginning with a 6am flight. Then, we packed up my car, and he drove me 150 miles to an appointment with a doctor in Allentown, then onward ~300 miles to Vermont directly after.
In the midst of all of the chaos involved with working that show we were once involved with, keeping me healthy enough to stay out of the hospital, off of chemo, and without unnecessary biopsies, and getting us everywhere through spans of hundreds of miles to keep up with the pace of staying alive, we've also had a lot of fun.
By strange serendipity, we've found ourselves in a private screening in my room of Juliet Jeremy London's upcoming short film, 'Monsters Anonymous' featuring Brian O'Halloran, as guests at a Wallflowers show in Boston (where he got to meet Steven because my lovely friend at House of Blues was kind enough to add a +2 for my tickets), recipients of a free cab ride in Boston by what can only be described as a literal genie (he actually referred to himself as 'Baba'), beneficiaries of TWO free hotel nights from two DIFFERENT hotels, BIG winners in penny slots (part of which I used for a surprise dinner at Emeril's Chop House) when the free hotel room to see the doctor in Allentown again happened to be near a casino...
That list just goes on. It's been Manifestation Central around here.
In less than a month, he's managed to meet most of the significant people in my life, including my high school English teacher/Model U.N. advisor (he actually came to Vermont from Philadelphia to attend the comic con I worked on!), my Wonder Twin, my Fairy Travel Father in Boston, my Con Father, my mother, my former boyfriend, my lovely friend and former Boston roommate, and a whole host of characters worth knowing.
It's been a time. Seriously. And a very bipolar time, as things get just as bad as they do good.
Tomorrow, we hit the road to visit a new Rheumatologist in Hershey. Until my finances and health are in sync, I must pursue specialists as locally as possible, so it's 3 hours to Hershey we go.
Then, onward to Asheville to celebrate Mr Jim Daddy's nuptial union with a lovely lady who makes him really, really happy.
Afterward, it's on to Raleigh-Durham, where I'll hopefully be able to begin the process of rejoining the UNC Medical network as a patient. Those doctors basically have a road map of my case history from diagnosis, and their care is World Class. I'm confident they'll do better in not poisoning me repeatedly and further crashing my kidneys.
So far, he's been so busy helping to keep both of us afloat and ensuring that I am able to maintain the EXTREMELY complicated balance with food, supplements, sleep, housework, doctors appointments, and life stuff, he's barely taken time to use Facebook.
If you know Nathan, you know that's significant. I haven't even seen a pun meme in weeks.
So, here are some pictures from our many adventures. I figured I'd share them before they become faded, and the stories lose their shine.
Also, we're working really hard to make me better with the whole Lupus/drug-induced kidney disease/Pancytopenia thing, and I could really use some help with gas money, co-pays and uncovered treatments, next month's supplements (which, by the way, appear to be working!), and the random things such as the fuel pump and new battery I just had to replace in my car. My disability application is still out for consideration, and I really, really need help to continue the forward momentum toward wellness. We've got my kidney numbers down and my cell counts up from the brink of death, but this is a lengthy and expensive process with no guarantees.
Please continue to share my story and fundraising efforts throughout your networks. I am still looking for long term solutions, including genetic therapy, wellness programs, advocates, and researchers.
Additionally, I must find resources to procure a decent wheelchair for instances when walking hurts too badly or is simply too exhausting, a service dog, and living arrangements closer to a medical team I can trust.
This whole thing is huge, and your shares help fuel our ability to find solutions and resources. Please visit my gofundme page to learn more about how I got to where we are today, then share this post, that link, or anything else from my page which you might employ to encourage others to take a look.
I have also created a care package registry on Amazon. If you don't feel compelled to participate in the gofundme effort, please consider taking a look at my registry and sharing that link with my story, instead.
If neither of these options suit you, you can always feel free to send me any extra happy thoughts you can spare. I love those the most.
To those of you who have already contributed and/or shared my story, THANK YOU. From the bottom of my heart. I've sent a lot of "Thank You's" through gofundme, but I'm not sure who actually gets them, or, in many cases, who you really are in order to reach you personally. Please know that each and every one of you holds a special place to me in this journey, and your efforts are entirely appreciated and WORTH it. I want the results, and I'm using these resources to do the necessary work to get out of this alive.
Again, I thank you.
Oh, and, don't worry, Florida. Nathan will be home soon.
Care Package registry: