There continue to be a lot of curve balls this year. A couple weeks ago we learned that my guinea pig Ivy had an abdominal mass, and we ended up needing to do an emergency spay. This is normally pretty routine with dogs and cats, but for small pets it's extremely risky and depending on what they find for emergency spays, they may not recover. As we saw with Archie last year.
Thankfully, she came out of surgery and bounced back quickly! It felt like the best news we've had all year (although I would've taken her not having a tumor in the first place too). She's a small creature, but she's tough. She even had babies when she was only 6 months old, before she was abandoned with them in a box outside. She's a trooper!
Meanwhile, since starting my new medications, I've been having trouble with my eyes. My right eye gets bloodshot almost every day and I regularly have tension headaches and light sensitivity, so much that I can't even look at a TV from across the room without wearing sunglasses. I've never really gotten headaches in my life, so the sudden onset seems to indicate that it's a side effect. There was one day where it was so bloodshot at night that I couldn’t fall asleep for hours. Eye drops didn’t help, and eye mask didn’t help, and I just kept thinking about how I could feel my swollen eyeball under my eyelids whenever I closed my eyes. I ended up taking a sick day because I got so little sleep and the idea of staring at a screen seemed awful. Later in the afternoon I tried drawing with an eye patch, but that really takes the wind out of my sails. Depth perception is way trickier with one eye, as you might imagine.
I spoke with my rheumatologist who recommended I make an urgent appointment with a rheumatology specializing ophthalmologist, but the appointment isn't until a month from now. He said that if that happens, I should just go to the Mass Eye & Ear ER and have an ophthalmologist look at my eyes day-of. There are many causes of a bloodshot eye and it's not worth taking any risks just because of scheduling. So yesterday my eye was again acting up and we made the trek downtown in the car. I was there for four hours and had a complete eye exam, which I've never had in my life. They asked when my last eye exam was and I said, "Uhm... never? I have 20/20 vision..." Really I had a few eye exams as a kid while on the same meds (which can cause longterm vision damage so they regularly monitor to stay ahead of it), but I think they were just basic look-in-the-machine exams. I was only 5 at the time though so I really don't remember.
During intake, they asked if I have had any falls, which reminded me to address that I have vasovagal syncope and it can show up for random reasons. Typical causes like blood tests and low blood sugar, but also more curious causes, like crowds, cold temperatures, smoke, hot temperatures, reading something grotesque, and not being able to sit down. They asked if it's triggered by people touching my eye and I said that I guess I wouldn't know until I tried it.
You can guess what happened next. The doctor gave me eye numbing drops to do a pressure test, and the instant I felt my eyes go numb and heard her say, "Now I'm just going to gently press on your eye", I started getting tunnel vision. After the 30 seconds that the test lasted, I told her I was starting to feel vasovagal and she reclined my chair, and a nurse and attending came in with cold wet towels to put on my forehead and neck. My blood pressure dropped down to 80/50 and they had to get me to actively breathe in and out because my heart rate was so low. I think I lost consciousness for a few seconds and came to while the attending shined a light in my eyes and asked if I knew where I was and if I could state my birthday. It took me about 10 minutes to feel better and they gave me some cold cranberry juice in the meantime. Certainly nothing that I haven’t experienced before, but always a little traumatizing.
Of course it wasn't over though. After that, I still had the majority of the full eye exam to go, so next had dilating drops. Again, this is all stuff I've never experienced before and without any eye problems in the past, getting drops feels really foreign, not to mention the added sensation of the specific drops in question. I started getting tunnel vision again, but luckily, after a brief machine exam, they needed to let me sit for a half hour while the drops went into effect, so I just sat in the dark room, reclined again, and tried to rest.
The rest of the exam went fine, and it was really interesting to see the different tools used to look into the back of the eye and examine the nerves and fundus. It was so peculiar seeing a bizarre but crystal clear refracted image of the fundus; I thought I was seeing things when I realized I was seeing my own eye blood vessels! This is all very novel to me but I'm sure everyone else has experienced this multiple times. Not being able to see from my face to 5 feet in front of me was troubling though; I figured out how to do talk-to-text to let Chris know when I was done.
The results were encouraging; my eyes are structurally perfect, vision still 20/20 so headaches aren't a sign of needing glasses. Though the next step may be neurological diagnostics, perhaps including an MRI. I've had a couple at age 5 and age 12, because the disease originally changed the shape of my skull. The attending explained that when headaches and eye problems are not caused by the eye itself, the eye is attached to the brain so that's the next place to look. And while that might be a big jump in general (ie could it just be dry eye or side effects?), given my type of scleroderma, it's better to make that jump early and rule anything serious out. Which I appreciate.
On the brighter side, Chris is slowly feeling better. He still gets bouts of chest tightness and shortness of breath, but since it's now been going on for 3 months, he feels he has identified a trend that it comes every couple weeks or so, but the severity decreases each time. He's working on building his strength with chest exercises and hopes to start going back to work once a week in August.
As for art-related topics, which I haven't posted about in ages, I've officially completed 12 pages of the chapter. I had hoped to complete the first 18 pages by August (since the first 18 in this chapter are the most tedious, at 16 panels/page), but I hadn't accounted for all of the recent crises so I'd say I'm doing alright considering. I was going at a pace of a page a week, but now it's a page every 2 or 3.
Above are two panels that I like a lot; the first taking place at night so a lot more shading. You'll see that the first shot is violet instead of blue-violet. This is because caran d'ache doesn't make the exact shade of blue violet that I was looking for, so each time I have one of these darker panels, I draw in violet first, and then go over with Prussian blue (one of my favorite pigments in oils!) I really like the split complementary color palette of goldenrod, green, and blue-violet, and violet just looked too juicy for the subdued tone I'm looking for.
I made a time lapse of a few recent panels on Saturday. I think I was subconsciously remembering techniques from my ninth grade drawing class. I don't remember doing tracing in that class, but do recall using graphite paper (kind of like carbon paper) at some point in that class so we must have. I think we may have used similar techniques in my sophomore printmaking class in college too, when doing etchings? For this, I traced a setting I needed to draw two more times by using a tracing paper, and then made my own graphite paper by shading the back with a 2B graphite pencil. It worked really well! Hard to see on camera but just enough to go right over it with colored pencil and not need to go back with an eraser that much. Before this, whenever I had a repeat background I was using a ridiculous system of measuring and transferring and it simply wasn't going to be scalable. Maybe I'll invest in some actual graphite sheets next.
I wrote recently about how my childhood illness, scleroderma, has come out of remission and I just started treatment. Something I've been existentially grappling with is that one arm of the disease is systemic and can affect the joints, leading to mobility issues. I don't have any of the tell-tail signs of that part of the disease (Raynaud's phenomenon, joint tightness and pain, calcium deposits, widened blood vessels, or esophageal dysfunction), though my fingers have occasionally been sensitive to cold in the last couple weeks and I did notice this weekend that both of my thumbs and index fingertips have suddenly developed rough and peeling callouses. I can't pinpoint where they would have come from since I haven't even been drawing much in the last week (and obviously not with my non-dominant hand) and haven't come in contact with any irritative cleaning products. I'm not washing my hands anymore than I normally do in these times and the rest of my hands are unaffected. Peeling and irritation of the fingers and hands is one symptom of the wider spread disease, which I've seen crop up frequently in an online scleroderma support group. Many who suffer it eventually lose the ability to write clearly, or completely lose any skill involving fine motor skills. The prospect of losing mobility in my hands has sent me into an (unhelpful) panic and the last three nights I've had nightmares about the disease progressing both neurologically and digitally. In one, my parietal bone cracked open as if it was a set of tectonic plates with one crashing over the other, and I could feel blood coming out of the resulting fissure. In another, I watched the color drain from my fingers when I held something cold and felt all of my fears confirmed.
I'm trying to not fall into the trap of believing every little ache and pain is a symptom. But I'm also grappling with the reality that time is a limited resource. I spoke with a friend yesterday about how much I am holding myself to the expectation that I should be drawing all of the time, otherwise I will never make significant progress when I go back to working full-time and commuting into work every day. She reminded me that we are living in troubled times, made up of violence, a social justice movement spurring necessary pain and self-reflection and learning, the ongoing pandemic, and a personal illness whose treatment puts me at higher risk of the coronavirus; it's not healthy to put additional pressure on myself. But at the same time, I worry that a couple years from now I will no longer be able to draw and I will lament the days I wasted when I still could. The only way to make myself feel better is to keep working hard, but at the same time, I don't want the drawing itself to be a source of stress. Stress doesn't result in good work and it doesn't exactly slow down autoimmune diseases.
Anyway, that's just a little bit of where my head is at this week. I'm still chipping away at the comic. I just don't have my head in the game like I did back in March and April.
The last few weeks have been nuts. I knew we wouldn't necessarily be "immune" to the physical impacts of COVID forever even as I was savoring the extra time at home not needing to commute. But right after my last post, Chris started feeling really ill. It started with unexplained fatigue and then rolled into chest tightness, shortness of breath, body aches, headache, and nausea. Some of those symptoms are textbook coronavirus... but on the other hand, he hasn't once had any kind of cough, and never once had a fever. The fever is being touted as such a trademark for the virus that we kept doubting whether that's what he was experiencing or not.
On May 6th, Chris left for work, but then came back an hour later saying he was exhausted and didn't think he should be out in public feeling like that. (He's an electrician so has continued working.) He slept all day and night, and wasn't interested in eating. The next morning, I was in a meeting when I got a phone call from him in the next room saying he needed help and thought he should see a doctor. He was so disoriented, in pain, and his chest felt very tight. He felt like he wasn't getting enough oxygen and I worried about his brain being affected.
We did a symptom checker and given that he was experiencing chest tightness and shortness of breath, it advised us to call an ambulance. They arrived within 10 minutes and took Chris to the hospital. They checked his vitals, which were luckily safe, did a covid test, and then I picked him up and brought him home. The relief when he called me to pick him up was immediate because I'd read so much about families not even having time to say goodbye to a loved one before they enter a hospital or ambulance and then they never see them again.
It was good to have him back home, but he didn't improve. He couldn't even sit up in a chair. The following week, the test covid came back negative and that concerned us more, even acknowledging that the false negative rate is high, the swab was taken very early in his symptoms, and he didn't have upper respiratory symptoms that could better trigger a positive.
Over the next three and a half weeks, he were in high alert. Neither of us left the house, nor did our roommates. Friends and family delivered us groceries. He quarantined in the little room where he works on music and I brought him all of his meals. I kept a digital "menu" of all of our groceries so he could tell me what sounded good, given that his appetite wavered. We wore a mask around each other at all times when I entered his room. I wore a mask around the apartment too in case I was exposing our two roommates to whatever he had. He sprayed the bathroom down every time he used it and brushed his teeth in his room, spitting into a trash can. We talked on the phone every night and tried to sync up movies or TV shows so we could watch them "together" from our separate rooms. Some days he was okay during those viewing periods, others he was really weak and could barely make it through the first few minutes. The only time I spent more than a minute in his room was during virtual appointments so that I could take notes and make sure he was asking all the questions we needed to cover.
A few days in, he had his first virtual call with his PCP. After two weeks with no improvement, he advised him to return to the ER and get another covid test, as well as a blood panel and chest X-ray. The ER staff denied everything but the blood panel and they told him that they "just didn't think he had covid" because his vitals were stable and he didn't have a fever. They sent him home within 30 minutes upon arriving. The blood panel was very broad and nothing turned up. Naturally, his PCP was upset that these services were denied and he advised that we find a private option for testing, so we eventually tracked down a covid testing site in Waltham at a CVS. The PCP scheduled an X-ray at his facility's onsite lab and later that afternoon he had the second covid test done. The chest X-ray came back clear and the covid test again came back negative. Who knows how much all of these hospital visits will end up costing with Chris's insurance. We haven't gotten any bills yet.
With the two negative covid results, his PCP had him come in for an in-person appointment. But before that could happen, Chris's symptoms got even worse. There was one night where I was worried he was having a heart attack. He felt like someone was sitting on his chest, which is exactly how my dad felt as he was having a heart attack. I almost brought him to the ER but as he weighed his options he started to feel better enough to sleep and our newly purchased blood oximeter showed normal readings. I slept on the floor next to his bed and checked on him every hour to make sure he was breathing. The next day, he was feeling a little better but really just not in crisis as much and after the previous night didn't want to take any chances, so we brought him to the ER for the third time. They did a full workup. EKG, another chest X-ray, blood test for clots, Lyme test, and some others. They gave him an IV with aspirin as a precaution. But again, everything came back clear and negative. They sent him home saying that maybe it was psychological and he should try exercise and meditation, and also made some comments about him coming to the ER three times in three weeks. While we knew this was because they couldn't find anything, given the state he was in with shortness of breath and chest pain, he could barely walk down the hall to use the toilet let alone go for a run. Not to mention his PCP had sent him to the ER the second time, the tests he'd ordered to get more answers had been denied, and assuming that their "it's not covid" assessment was correct, we had no way of knowing what was causing his chest pain, aches, and various other symptoms. How were we supposed to know if it wasn't something dangerous? Aren't you supposed to go to the ER when you have severe chest pain and pressure?
His PCP reviewed the test results at the in-person appointment the following week, and decided to schedule further tests after doing yet another EKG and not seeing anything abnormal. So on Friday, we went to the hospital for a CT and ultrasound. Both of those came back clear from what his PCP could tell, and now he has an appointment with a pulmonologist next week.
LUCKILY, within the last couple days he has really turned a corner. He has been making his own food, doing light chores, and walking. So our assumption now is that it was covid after all, and it just didn't show up on the two swab tests. If/when antibody tests become more available around here, I'd like for both of us to get one to better support that hypothesis. Because as much as I'd been social distancing and wearing a mask, it seems unlikely that I wouldn't also catch it and maybe just be asymptomatic. I was washing all of his dishes and laundry after all.
As if all of that wasn't enough, I have also been managing my own health issues. In March, I noticed a pink mark on my face next to my right eye. As a child I'd had a disease called Linear Scleroderma en coup de sabre, which caused hyperpigmentation and translucent skin on my right temple, as well as alopecia and a deep bone depression on my scalp. In college, a version of scleroderma reappeared on my side and back and again went into remission after 3 years. So when I saw some activity in the mark on my face, I started to worry. I checked the lesion on my side, and it appeared to be active as well. I monitored it for a couple months, hoping it was just a blip, but the signs didn't go away and the lesion on my side seemed to be progressing.
So taking stock of that fun development, just as Chris was getting sick, I was getting in contact with my pediatric rheumatologist from childhood, who has since retired, hoping he would have some recommendations on specialists in the Boston area. He responded quickly (and gracioulsy!) and I was able to secure a virtual appointment after some back and forth with his referral's office and making sure it was in-network with my insurance.
The concern at this point was not just that I could be sick again, but also that it might be active on my face again and en coup de sabre can cause neurological complications, even epilepsy. On top of that, scleroderma is an autoimmune disease and treatment involves immunosuppressants, and I have asthma, so both of those put me in the high risk bracket with a compromised immune system and breathing trouble. With my partner actively battling a likely case of COVID-19, it felt like terrible timing to say the least.
My doctor ended up having me go in for a lab test to explore diagnosis (scleroderma can cause specific abnormalities that show up in an SCL-70 and ANA test). This was the first time I left quarantine and it was very nerve wracking to be out in public after 2.5 weeks shut in the house. The tests came back negative, which is good because it does not point to more systematic forms of the disease that can cause organ and joint involvement. But the tests also have limited sensitivity and given the cosmetic signs on my skin, the diagnosis was fairly obvious. As such, as of two weeks ago, I'm now on mycophenolate (a medication that suppresses the immune system and is often given to organ recipients) and hydroxychloroquine, a disease modifying anti-rheumatic drug (same one that was being explored as a covid treatment and eventually proven otherwise). I'm at a half dose of mycophenolate right now, and assuming my biweekly labs continue to come back normal, will hopefully be at a full dose by early July. I'm relieved that I was able to start treatment quickly because the progress hasn't slowed down and I've even started to experience headaches. I've traditionally never gotten headaches, only a handful my entire life, so this development and the fact that the disease has changed the shape of my skull in the past is cause for concern. The doctor asked me to periodically photo document my scalp for changes over time, and if something looks or feels different, I'll have an MRI.
The med schedule is annoyingly finicky, mostly because when I'm supposed to eat/not eat is confusing, and one of the drugs needs to be taken 4 times daily. My last treatment therapy was much simpler: one 15mg methotrexate pill once per week. We discussed this, but apparently Brigham & Women's supports the myco/hydroxy combo for scleroderma more than methotrexate and have tracked better results. Which is interesting because as a 5-year-old I was originally on hydroxycholorquine until my specialist switched me to methotrexate for the same reason!
Once I'm on a full dose, a typical day will look something like this:
While all of this was bubbling up, I ultimately decided that I needed to take a step back from work. I started working 75% my normal schedule (30 hours/week) and I've found that I've really needed it. In normal circumstances, having an extra two hours a day would mean I have more time to draw, but I can tell I've needed it because I've spent most of that extra time just decompressing. There is a time and place to push myself but given that autoimmune diseases are exacerbated by stress, now is not the time. To add to everything, for the last month I've also been taking calls with job candidates in Tokyo starting at 6am twice a week; while also cooking and cleaning for Chris and myself and checking on him between every meeting and traveling to all of our various appointments and tests, work got to be too much.
That said, I have still been drawing even though my pace has slowed to about a half page every week instead of a full page. I've started posting content here since it was getting hard to follow on the blog.
I have some reflections on the Black Lives Matter movement that I will share next week, but wanted to get all of this personal context out of the way so I can move on. But for the record, I fully support the protests and riots, condemn the police, support reform and abolition (immediate reforms, with abolition as a longterm priority), and would be out protesting with my fellow citizens if it weren't for the new immunosuppressant + pandemic challenge. I'm finding other ways to support and donate while staying home!
When I was five, my brother had his appendix out. I don't recall much from this time, because I was only in kindergarten. I remember he had a close bond with the nurse, who brought him cheeseburgers from the food court, and recall spending extra nights at daycare because my parents had to balance time at the hospital. But there was one night when my dad came to pick me up and he had good news; the local pharmacy had held an art contest a few weeks before, and whoever did the best job coloring an identical coloring page got the prize of a 100 pack of crayons. It even had a built-in sharpener. I had submitted my coloring page the week prior, and had just been announced the winner. I remember sitting by the window in Andy's hospital room, coloring in a coloring book about postage stamps with all my new crayons.
Hannah Dunscombe is a painter and portrait artist based out of Mansfield, MA.