2024 IS ALMOST HERE :)
Calendar/planner/Pegacorn Press pre-orders, exciting news, half year roundup, + a Long Covid update...
It’s been quite a roller coaster since I was in Chapel Hill last May doing an artist residency when I last sent out a Substack post— it’s been complete with some real lows, highs, and everything in between. As per usual, my ongoing health problems from Long Covid have played a large part of that and simply put, it’s been *overwhelming.* Despite all the complications of living like this, I do actually have positive news to share in the dedicated LC zone of these communications, which you can find at the end of this post.
This is a truly a dense newsletter and the last one I will send out this year due to everything going on and my extremely limited energies at the moment. Please feel free to scroll through the sections, as I truly don’t expect people to read through all of this.
Again, thanks for being here and for supporting Pegacorn Press and my personal art practice. I truly appreciate it and it provides me with a lot of fuel to keep trucking along, even when I don’t feel well.
Sections to jump around to:
—Calendar and planner pre-order, Mike Stoltz’s new publication in the COLLISION CENTER series, and a reprint of Edie Fake’s, GAYLORD PHOENIX #8 are all available for online orders now.
—Something special to look forward to
—Things I never got around to sharing: I’m the absolute worst at sending out emails now and I’ve done many great events that I have not advertised (besides on Instagram stories)
—Long Covid update (trigger warning: talk of suicidal ideation)
Calendar and planner pre-order, Mike Stoltz’s new publication, and the reprint of Edie Fake’s GAYLORD PHOENIX #8 is available again
It’s that time of year again! Not only is it calendar and planner season, but also Mike Stoltz’s Collision Center III and the reprint of Edie Fake’s GAYLORD PHOENIX #8 is available for mailorder.
I don’t typically do pre-orders, however this year I had to due to some Long Covid related medical procedures that have completely derailed my usual holiday sales schedule.
Calendars and Planners are listed at a discounted price and after December 4th, they will go up to their regular prices of $20 and $25. If you are a mini-print of the month subscriber, please don’t order a calendar because I will be sending you one :)
All orders will be start being sent out on December 11th, which also includes if you add Mike or Edie’s book (which you should!) so shipping can be bundled together. If you want their books beforehand, please make a separate order.
You can order everything HERE + thank you for 14 years of calendar and planner LOVE!
SNEAK PEAK FOR MARCH/APRIL: I should wait to announce this… but I’m also just too excited to not share that I was awarded a six week artist residency at the Women’s Studio Workshop in Rosendale, NY. I’m really looking forward to the time to experiment and explore new techniques at such a renown institution that I have respected from afar for a long time now. See you all of March + April, New York State!
What exactly have I been doing for the past six months (besides being sick)?:
Los Angeles for Printed Matter’s LA Art Book Fair where Mike Stoltz and I debuted a third project in the Collision Center series and I also hosted a panel on “Publishing and Accessibility” with Be Oakley of GenderFail and Jeanne Vaccaro. Big thanks to Be and Jeanne for doing the panel with me, where we were able to speak frankly on how we all deal with being active artists, writers, and/or publishers that live with debilitating chronic health problems. If you are interested in listening to our panel which has been archived by Printed Matter, it is available HERE. Be and I are talking about potentially turning this into a publication, which seems like a great way to keep the conversation going.
Wow… well I never posted about this because everything has just been so busy and hectic, but it was definitely a highlight of the year so far! I was part of a team that developed the inaugural Pittsburgh Art Book Fair and it finally came into reality on the weekend of September 9-10th at the Carnegie Museum of Art. Five of us worked together as co-directors, along with several key people at the museum, to create this wonderful weekend that celebrated local and international art book culture. It was well received by the larger community here and amazingly went off without any major problems, which was a testament to how much thought and care we all put into this event. We are already working on a PABF 2024, so if you are interested in learning more, please make sure to sign up for our email list which you can find at the bottom left of our home page.
Visiting artist at Kenyon College: Professor Charlotte Woolf invited me to Kenyon College this fall to speak with two of her classes and to do a larger seminar that was open to all the students on campus. Focusing on artist books and publishing, I brought several collections of titles to present to the different groups of students, while also talking about my work and how that has progressed over the twenty seven years that I have been making publications. It was super fun to show the limitless possibilities of form, content, and design and see how the students engaged with that and what kinds of questions the books inspired. I had met Charlotte through art book fairs in NYC and a mutual friend who worked at Printed Matter, so it was very nice to see how these connections keep rippling out over time and space. Thank you again, Charlotte and all the students at Kenyon College that I engaged with, for having me!
If you would like to bring me to your university or to invite me to do any other type of public event, I am always open to new opportunities. Over the years, I have done many panel talks, presentations, workshops, been a juror for residencies/awards/book fairs, done studio visits with graduate students, and in general, love public speaking. I particularly enjoy talking about publishing, Risograph printing, running a small press that regularly tables art book fairs, and now what it’s like living with chronic illness while doing all of the above. Please keep me in mind and feel free to reach out if you would like to talk about potential engagements.
Printed Matter SUNDAY ZINE fair: A one day event to celebrate the opening of Copy Machine Manifestos: Artists Who Make Zines exhibit at the Brooklyn Museum. This mega show is up for several months so make a point to check it out if you are in the NYC area during the winter :) It was a really special day, full of so many wonderful other exhibitors and visitors and I want to thank the Printed Matter team for inviting me to be a part of it.
My Sidewall Mural Project piece, SOMEONE I LOVE HAS LONG COVID, is up now until the end of the year. As someone who lives with Long Covid, advocacy has become a huge part of my life not only for myself, but for others living with debilitating invisible illnesses, particularly within the post viral realm. We (the chronically ill) are here, often seeming visually fine and “functioning,” but really struggling on the daily. It is my hope that more people become more informed and considerate about the lived experience of the chronically ill, particularly those who it’s less obvious and clear as to what the symptoms, limitations, and concerns are.
LONG COVID UPDATE:(trigger warning: talk of suicidal ideation)
The past six months have seriously kicked my ass in a real way and if I hadn’t already had it handed to me over the past several years, I would have definitely fallen apart. To live with some of the health conditions that I have experienced with Long Covid has been insufferable and there have been times that have pushed the edges of suicidal ideation. Last May I got to a point where I wondered if this was how it was going to be forever, what was the point of existing? That I am pretty much half living and only able to survive by the generosity of my community and while I am technically disabled, I’m not disabled enough to actually get the assistance I need. Since I can barely work several days in a row on a regular basis, how would I ever get ahead and not always be broke and in debt after spending my savings to survive this past year? Being familiar with the whole world of post-viral illnesses that have zero treatments and seeing how many people are suffering at home with no answers, it all felt completely hopeless. And the world moving on, acting like Covid isn’t really an issue and you know, kind of like the flu, when you’ve already lost several years of your life to it and can barely function… yeah…
When you are in constant physical pain, have brain fog, and have intense fatigue with no sustained relief, thoughts like these weigh more heavily on the brain. I hit a critical max and knew that I was in a very bad place mentally due to the never ending roller coaster I have been on. Fortunately, I have several very supportive circle of close friends and I reached out to them and told them what was going on. I shared how bad I was feeling— of course all of them knew that everything had been pretty terrible for a while now— but that this time was particularly dire. I was able to ask for help seeking a medical trauma and grief informed therapist and also just being honest with how I was feeling, felt like part of the process of moving towards action.
The feeling of total despair and like you are half living was not totally new to me though, as I experienced it for several years with an untreated concussion and felt like I was a ghost of myself. The only reason I even finally was able to get treated for my concussion was because I mentioned to my PCP that I felt dead inside in late summer of 2020. I remember him saying, “Hmm, you have a concussion listed in your chart from 2016—did you ever get proper treatment for that?” It was due to him actually putting the pieces together that led me to be evaluated by a TBI (traumatic brain injury) informed physiatrist, who then got me the proper referrals to the treatments I needed. It took several years to get to a better point, but it was almost like the boot camp for what lay ahead with what I was going to experience living with Long Covid.
Medical practitioners often tell me that I am handling everything really well and have a very grounded and realistic perspective of living with my diagnoses. That a lot of their other patients are really struggling and hope for quick fixes. I understand the desire to be healed and back to your old self completely, but know that from my experience with my concussion, that I will never be the same person I was prior to when an industrial stack cutter handle slammed into my head (due to a faulty lock), and/or when I was infected by a novel virus that circulated around the world in a pandemic. I don’t know if I will ever be able to get rid of Long Covid, or if this is just going to be a matter of managing symptoms for the rest of my life? Or if I get Covid again, if that will push me back to where I was at my worst? Or if I get the new vaccines as they roll out, if that will trigger an adverse response? Even without the diagnoses that I have, life is full of unknowns, but the unpredictability of my chronic health conditions has been the aspect in which I have had to learn to be the most graceful, gracious, and gentle with myself. It is not an easy feat and I have become a messy person at times in the process of accepting my new reality, but I think since I already spent years crying about my concussion and how confusing that experience was, that I have used up that energy and can’t repeat that again in this circumstance.
Sometimes things have to get really bad in order to jump start me back into action. That has proven to me again and again that I have a strong will to live despite everything that has come my way and I won’t give up until I’ve extinguished every option available to me, even if I fall apart for a while. After my mental breakdown, I was able to get some necessary medical appointments (quickly!) and one of them was at the UPMC pain clinic. As soon as I explained my symptoms, the doctor said, “well, it sounds like very classic fibromyalgia,” and told me of some of the drug options. When he left the room, I quickly started researching fibromyalgia and literally every symptom matched what I was experiencing, and so did people’s testimonials on how it affected them. Fibromyalgia is what is known colloquially as a “garbage can diagnosis,” which means they don’t know what the problem is and a lot of medical professionals even doubt that it’s real, much like Post Concussion Syndrome. Anyway, I do well with having a diagnosis to research and take action on, so I started with the first medication suggested (Duloxetine) and the loading up of this drug was pretty uncomfortable and disruptive. After about six weeks, I did notice that I was experiencing pain *slightly* differently and that I had way less anxiety driving my manual car up the steep roads of Pittsburgh. After over four months on it though, I can’t say that I think that this medication actually works for me and I already went through the process of getting off of it, which was extremely harsh and I’m still feeling the effects of it several weeks out.
I was also able to see a cardiologist who addressed some of my post viral dysautonomia symptoms, which has included intense fatigue that has been caused by abnormal swelling below my abdomen while awake and walking around. I started taking a new medication (Midodrine) for that and immediately felt better and am now able to have longer days where I don’t feel like I’m full of lead. A week later I was in Los Angeles for Printed Matter’s LA Art Book Fair and I saw the results of this medication full on. These fairs are exhausting even if you are in good health, but I was definitely way less tired doing it compared to pre-Midodrine events I had done before. The hope is that my body will learn how to properly function again through the use of this drug, but again, there are many unknowns and if I miss a dose (I take this medication every 3-4 hours every day), I definitely start to feel tired and heavy again. I am hopeful though that things will improve, it just might take longer than I want and that I need to remain patient throughout this process.
It was in a check up with the UPMC Post Covid clinic that I learned of stellate ganglion nerve blocks, which initially I was baffled by. After extensive research on the procedure with every symptom or diagnosis that I have been given so far, I was convinced that I needed to have them done. I went on a rampage trying to obtain the proper referrals to get the procedure and luckily was able to begin this somewhat experimental treatment within a couple weeks. I have had four of them done over six weeks and have experienced astounding results in terms of my pain levels, mental clarity, and function. Stellate ganglion nerve blocks have been around since 1928 and are approved for pain treatment, though the military uses them extensively for PTSD. In more recent times, it is being applied to everything Long Covid, from the loss of smell, constant pain, brain fog, fatigue, and the many other associated symptoms. After my first one, I felt so WEIRD and definitely messed with neurologically, but Covid has also done that… so it’s like trying to correct the imbalance? It’s too much for me to get into what the procedure does exactly, but the short answer is that it temporarily turns off half of the signaling between your brain and central nervous system in order to “reset” you. We all have two of these nerve bundles that run down either side of the length of your neck and the doctor injects one side with anesthesia and a steroid (for the first two procedures and then without for any subsequent procedures) and then does the other side after a couple weeks.
I feel so much better and recently woke up and realized that I wasn’t in as much pain and am more flexible. My pain level used to be a constant 7/8 out of 10, but moved to a 4/6 after the first procedure and now is about a 3/4 after the second one. After two more procedures, I’m still hovering around a 2/3 but that is a HUGE improvement and I have also been having a resurgence of creative thought, which is something that has been stifled since becoming ill. For the first time, I’ve felt sustained relief and also have actual hope that I can get “better.” That is very subjective language, but anything is better than what I have been dealing with. There is still a lot of fear of the unknowns around all of this, but I have needed this little break in order to recharge to have the energy to go forward, even if this ends up being a, “two steps forward, one step back,” dance that has been my experience so far. To be able to call my mom and excitedly tell her that I am feeling better in a very real and sustained way felt like a milestone in this journey.
People have reached out to me wondering if this procedure will work for them or people they know, and with how complicated Long Covid is, I cannot say anything for sure. I always recommend that people try to get into a Post Covid clinic and see only Covid informed doctors and specialists at this point. If that is not a resource that can be accessed, even a compassionate PCP can help steer things in the right direction, but what works for me, might not work for someone else. Post viral illnesses are hyper complicated so I advise to try multiple treatment options and be patient. At the very bottom of this I have made a list of what I have tried and what works, and hasn’t worked for me so far in my ongoing saga.
There has been so much intense pain and disappointment over the past several years and carrying that weight while also seeking love and joy within this time, has been incredibly difficult. I am thankful to my best friends (Johnny, Daniel, Faythe, Cookie, and Caeleb) and to my mom and sister for being so supportive—without these people in my corner, I’m not sure where I would be at this point. I am also so grateful for my close friends here in Pittsburgh and beyond, who have also kept extending their support to me during this time. And to everyone online and in person during fairs that I have chatted with or who has shared a kind word or sent encouraging messages. I also have to acknowledge and give my thanks to every doctor, nurse, or technician who has helped me along the way because again, I don’t know where I would be without all the medical interventions I’ve had so far. Thank you, thank you, thank you!
There is still a long road ahead but I’m happy to share this report of hopefulness and progress after over two years of dealing with Long Covid.
My Long Covid treatments and things I’ve tried so far (which has been a mixed bag):
Cardiac ablation for SVT: worked! I am forever thankful I got this before possibly dropping dead from 160 BPM SVT episodes 3-4 times a day due to Covid somehow getting into my heart.
Low dose naltrexone for fatigue: worked for me initially but I’ve been on it since last year and am on so many other meds now that I don’t know anymore.
B-12 injections: did not work and also injecting yourself is hard and annoying.
Duloxetine for fibromyalgia: did not find it to be particularly helpful and after experiencing how stellate ganglion nerve blocks actually did change the shape of my pain, I got off this med so I could take another experimental med (#7 on the list and also classified for anxiety) for brain fog.
Ketamine lozenges for anxiety due to medical PTSD: works and highly recommend. Side note is that it also seems to help with pain, but I would not recommend it as a pain killer of any sort at all. It just definitely seems to do something with inflammation that is notable to me.
Midodrine for dysautonomia symptoms: works for me and also life changing.
Guanfacine + NAC for Long Covid brain fog. This is a new medication regime for me but came from two Yale researchers that have seen improvements with their patients. I am only about a month in and it’s hard to see if it’s working yet, but time will tell.
Medical salt pills and compression socks: very helpful and easy interventions.
Different herbs from an herbalist: I love herbs, do think they work, and can be helpful, however my problems are too complicated at the moment and I need western meds to put a dent into what I have been dealing with. I believe that eating really well and less coffee, less sugar, and a regular sleep schedule have been more effective for me in terms of seeing results.
Different supplements that other Long Covid patients posted online that doctors recommended: to be honest, they did not help :(
Stellate ganglion nerve blocks: life changing and I am hoping that 4 treatments are the magical number for me. If you are also dealing with Long Covid, please research this procedure to see if it would be helpful for what you are experiencing.
Going gluten free to decrease *fibromyalgia* symptoms: definitely helps A LOT. Also avoiding all nightshades and unfortunately mushrooms, which is a bummer. I am hoping that over time, I can slowly integrate these foods back in, though the GF thing might be for life.
CBD gummies: I can’t tolerate THC very well, so I get full spectrum gummies that have trace levels of THC and take these in the evenings to help with sleep/pain. I am a big fan of all CBD products after finding them to be one of the only things that helped with my concussion headaches.
Lavela WS 1265 (Lavender Essential Oil Softgels): these are new to me and came recommended by a friend who is a therapist, but actually seem to work really well for me a week in. Similar to a Xanax, it’s helpful for anxiety and sleeping. You will end up burping lavender which I don’t mind, but it’s not for everyone.
SEED: the Instagram influencer probiotics that really balanced my guts out. Pricey, but I’ve found them to be some of the better probiotics I’ve had over the years. There are theories that there might be Covid viral reservoirs in the gut, also speculation about gut issues and fibromyalgia, so this was an easy thing to try to add to my life.
Physical therapy: works though at times seems “dumb” and made me question: what am I doing here? But then seeing how I would feel like I did a work out afterwards, and understanding how de-conditioned I am at this point, good to have experts to check in with on how to proceed moving forward.
WHEW! Ok, that’s a wrap for 2023 and thanks for getting this far in this massive post. Feel free to reach out if you have any questions about Long Covid stuff, want to offer me jobs of any sort, or just wanna say hi :)
Be well in 2024 + big hugs—
Caroline