I recently read a bit on the science behind gratitude, and it’s fascinating.
By reducing the stress hormones and managing the autonomic nervous system functions, gratitude significantly reduces symptoms of depression and anxiety. At the neurochemical level, feelings of gratitude are associated with an increase in the neural modulation of the prefrontal cortex, the brain site responsible for managing negative emotions like guilt, shame, and violence.
As I embark on a path to heal my entire body from inflammation and stress, gratitude seems like a great new tool to try out.
The concept of gratitude came to mind last night as I was getting ready for bed. For the past few months, I’ve been having a little bit of ocular inflammation in my left eye, which is my “good” eye. Thankfully, my doctor is helping me manage it with eye drops and not systemic corticosteroids (which suppress your immune system and are scary to take during the COVID pandemic!)
I put the eye drops in my left eye and kept that eye closed for 30 seconds, as the instructions indicate. During that 30 seconds, I was reminded of the vision loss in my right eye. I looked in the mirror and could only see part of my reflection; the lower left quadrant of my vision is completely gone in that eye. The vision that remains is distorted, very blurry, and colors are muted to sepia tones. I picked up lotion and tried to read the small print on the back of the bottle with just my “bad” eye, and it was difficult. My poor peripheral vision in that eye made the text swirl as I concentrated on finding my focus and discerning each word.
In that moment, I was immensely relieved to open my left eye and have both eyes working together for improved vision once again. Vision loss is life changing, and while it is still scary to not know what the future holds for my battle with uveitis, I’m enormously grateful for the vision I still have right now.
I shut off the bathroom light, walked to the bedroom, and crawled into bed and reflected on the day and the week. It’s been a long one: the worsening pandemic and riot at the Capitol weighed heavy on my mind, and I struggled through some anxiety and very long work days this week, too. Life is hard right now.
Yet… My bed felt warm and soft and cozy. I remembered some very fun and meaningful exchanges I’d had with sweet friends throughout the week. My cute, little dog was quietly snoring in his bed on the floor. My husband texted me to let me know he was driving home from work. I’d eaten a warm and nutritious dinner. I used the remote to flip on the large flatscreen television to an array of shows and movies. With the help of my glasses, I could read all the text on the television from 20 feet away, in my spacious bedroom, in my safe home. In this moment, I recognized that I live a life of luxury compared to many people in the world, and there are countless things for which to be grateful.
Going into the weekend, there is more opportunity for quiet time, for relaxation, reflection, and self-care. It’s a nice time to sit back and think… What are YOU grateful for?
Like thousands of other people, part of my New Year’s Resolution is to eat healthier. For me, though, it’s not just about being healthier and losing weight. My vision and thyroid and whole body are depending on improved nutrition.
Uveitis, which I constantly struggle with, is an inflammatory disorder. I was recently told I have an under-active thyroid, too, which I suspect might be worsened by inflammation. Because of all the inflammation in my body, I’ve taken so many steroids in the last three years; I worry about my adrenal glands, cortisol levels, and pesky weight gain.
I’ve procrastinated from changing my diet because I am a major emotional eater. I console myself with a treat when I’m sad, and I celebrate with a treat when I’m happy. Food is soothing to me, and (until the pandemic) elaborate meals have been enjoyable social activities for my family and friends. I’ve finally come to the realization, though, that food truly is fuel, and it might actually be doing me more harm than the good feelings I get from my treats indicate.
Hallmark rules of an anti-inflammatory diet: NO SUGAR, GLUTEN, ALCOHOL, CAFFEINE. I also need eliminate processed or fried foods, and limit dairy and red meat.
I used to look at that list and think NO FUN.
Bye, burgers and fries! Bye, cookies and ice cream! Bye, pizza and mozzarella sticks! Bye, mac n’ cheese and chicken tenders! (I will miss you most of all.) Also, what is life without wine?!
Recently, though, I have felt so crummy from the various health problems I’m facing. Feeling that awful isn’t fun! If eating cleaner can make me feel better, then maybe this can be fun.
A Sunday tradition in my house is to wake up, stay in comfy clothes, jump in the car, pick up a breakfast treat and an iced coffee, and go for a Sunday drive.
With today being the first Sunday of the new year, I had a chance to practice my healthier habits. Thankfully, our favorite Venezuelan breakfast is gluten-free! Arepas are made with corn, not white flour. My favorite filling is perico (eggs with tomatoes and onions) and turkey bacon, so I didn’t have to make any substitutions.
When we rolled into the Starbucks drive-thru, I got a little depressed. I love an iced vanilla latte, and I’ve always been a decaf girl, so I usually thought “How bad can this be?” Well, I learned that, with all the vanilla syrup, my favorite latte has 35 grams of sugar! The American Heart Association suggests no more than 24 grams of sugar for most women for the entire day! If I paired that coffee with a doughnut (which I’m known to do), then I was probably (at least) tripling the amount of daily recommended sugar.
So, I perused the Starbucks menu and remembered how much I love their herbal teas. The Passion Tango Iced Tea, without any added cane sugar, is delicious! I happily ordered that, and I didn’t miss my latte at all.
And when I stopped to think about it, regardless of any food, treats, or drinks, spending time with my hubby on a peaceful Sunday morning was the real fun. ❤️
Most obviously, the global pandemic that continues to wreak all the havoc that I feared in my last blog post. As predicted, the virus spread like wildfire after Thanksgiving. I’ve known several people who have contacted COVID-19, and it is scary and awful! I’m continuing to wash and sanitize my hands, wear a mask whenever I’m outside of my home, and keep 6-feet distance whenever possible. The vaccines bring much promise for an end to the pandemic, but we have a ways to go before it’s truly “over.” I hope everyone reading this is staying safe and healthy!
The pandemic made the recent holidays look much different than we were used to, which was a little depressing. I truly tried to stave off the sadness. I tried hours of Christmas music, many cups of hot cocoa, many more Christmas cookies and treats, and countless utopian Hallmark Christmas movies. I bought way too many presents for my husband, and even bought a few cozy Christmas sweaters and sparkly snowflake earrings for myself. Nothing really helped because it couldn’t replace what I was really missing: the togetherness that comes along with the holidays. I missed the crowded parties with my coworkers and friends! I missed going to church, seeing all the beautiful decorations, and singing along with the hundreds of others in the pews around me. Most of all, I missed seeing family members, gathering together for a meal, and giving hugs!
Last night, New Year’s Eve, was a quiet night in. As a final “Quarantine Activity” of 2020, I attempted to turn my apartment into a nightclub so that my husband and I could really “party.” I blew up balloons, created a special VIP lounge, cooked up some yummy tapas, and chilled some bubbly wine. My husband thought it was very exciting, and it was fun… for about two hours. Then, like most people we know, we were ready to go to bed and have 2020 be over, once and for all!
And now, here we are. New Year’s Day. January 1, 2021. A fresh start.
I started this blog in 2019, when my new year’s resolution (two years ago!) was to share my voice after “a tough year.” If only January 2019 Me could see January 2021 Me! She’d never believe all that we’ve been through.
I started writing this blog in October 2019. I was in the middle of my third uveitis flare, and it was only a few months after my father died. In November 2019, my husband and I were surprised and overjoyed with a pregnancy. Then 8 weeks later, we were devastated by a miscarriage. Grief overtook my entire world, and the combination of losses left me reeling into January 2020, when we started hearing some unnerving details of a novel coronavirus. Less than six weeks later, the world shutdown.
In April, amidst the lockdown, I began losing my vision again and started treatment for a fourth uveitis flare (which I can now attribute, with almost 100% certainty, to stress). We acknowledged the one year anniversary of my father’s passing in July, closing out a year of painful “firsts” without him. Throughout all that, my husband and I have wrestled with the concept of “trying to conceive” after loss (and during a pandemic!), and all along, I have been mentally acknowledging another year of painful “firsts” … All the occasions that I was experiencing for the first time without a baby in my arms: the first Mother’s Day since the miscarriage, the baby’s due date had he/she survived, and worst of all, the anniversary of the loss itself, which literally brought me to my knees.
My head hasn’t stopped spinning. But maybe it’s starting to slow down.
It’s time for a renewed resolution.
We have many more months of distancing, staying home, and slowing the spread of the continued pandemic, so there is plenty of time to focus on betterment: – More frequent and well-practiced writing (which is truly a passion and beloved hobby I’ve neglected for so long!) – Focused efforts on physical health (for myself and any little ones that God might bless us with) – Reflection, meditation, and careful attention to self-care and mental health (as, unsurprisingly, my old friend Anxiety has started creeping around lately)
The times we are living in are truly wild, remarkable, and unprecedented. I got a good laugh out of this meme:
I hope you are finding some memes that make you laugh, and I hope you are taking time for self-care as the difficult days drag on. Have you made any resolutions for 2021? Or is it enough that we just try to make it through?
As I mentioned in my last post, I credit Dr. Lucia Sobrin at Massachusetts Eye and Ear with restoring my vision. She and the other doctors who treated me in 2017 worked so hard to find a cause of my uveitis. Many times, uveitis does have an infectious cause, so doctors have to rule out MANY infectious diseases. They also have to rule out non-infectious, or systemic, causes (like autoimmune disorders or Multiple Sclerosis). I had so many blood tests done!
In a lot of ways, I am grateful that the tests came back negative or inconclusive. That means that I don’t have an infectious disease or systemic disorder. It was frustrating, too, though, because there was no explanation for my vision loss. Dr. Sobrin explained to me that something like 50% of uveitis cases have no known cause, and that’s considered idiopathic.
With idiopathic uveitis, where there is no infectious disease or systemic disorder to treat, the main goal is simply to control the inflammation in the eye before permanent damage is done to the eye. The quickest way to control my inflammation was to prescribe me a corticosteroid called prednisone. Because I had panuveitis (meaning the uveitis was all over my eye, in the front and in the back near the optic nerves), I had to take both prednisone eye drops, which treated the front of my eye, and prednisone oral tablets, which treated the back of my eye and my optic nerves.
Dr Sobrin asked me if I’d ever taken prednisone before, and I told her that I had. When I was about six years old, I had a bad case of poison ivy all over my face, so I had to go on a 10-day course of steroids.
She nodded, again not smiling. “This will be different,” she said. “We’re starting you at a very high dose. Let me know how you tolerate the side effects. Steroids can really make you crazy.”
With that, she wrote my prescription. I was told to take 60mg of prednisone every day with breakfast, to take Pepcid AC if I experienced heartburn, and to come back to see her for a follow-up appointment in one week.
I didn’t notice any side effects the first couple of days, but on the fourth day, I felt it. I call it the HUMAN ZOOMIES. You know how when dogs or cats get a sudden burst of energy, and they run around the house very quickly? Sometimes, pet owners call that “the zoomies,” and I felt like I had them ALL THE TIME. I’m not exaggerating; I felt it all day and all night. I was constantly searching for projects: I made three batches of cupcakes and two cakes for my cousin’s graduation party. I reorganized our pantry and alphabetized the spice rack. And one night, I decided to color my own hair.
“My roots are so bad,” I said to my fiancé. “But I feel too zoomy to go to the salon. I think I would have a panic attack sitting in the chair.”
“I think your hair looks fine. Just wait until you’re feeling better, and then go to the salon,” Cris (the voice of reason) responded.
My stubbornness and manic productivity unfortunately overruled Cris’s logic. I went to CVS and bought a box blonde hair color. (In 20 years of coloring my hair, I have never attempted this.) That night, I got to work in my own Steroid Salon. I even tried to replicate the professionals by parting my hair (not with a styling comb but with a kebab skewer I found in the kitchen) and sectioning-off the hair with foil (not beauty foil, but Reynolds-brand aluminum).
When I was done (somewhere around 11:30pm) the color didn’t look awful. In fact, it didn’t look a whole lot different than when I started. So, of course, I had to keep pushing the envelope. I decided that, next, I should CUT MY OWN HAIR. I grabbed the kitchen scissors and started hacking away at my long bangs.
At this point, it was close to midnight. Cris was watching TV in the living room when he heard the “cccrrrrsssssshhhttt, cccrrrrsssssshhhttt” of the scissors cutting through my hair. He walked briskly to the bathroom.
“Babe…” he said slowly. “What are you doing?”
I turned to look at him. I undeniably looked insane.
“My hair looked bad. I want it to look pretty,” I said, emphasizing my insanity.
“Don’t do that, babe,” he said slowly. I noticed a tiny spark of panic in his eyes. Cris is my anchor, my rock, and my stability. If he was scared, then I knew that I should be VERY scared. I started to cry.
“What am I doing? I think I’m going crazy,” I sobbed.
“You’re going to be OK,” he reassured me. “It’s just the medicine you’re on.”
As he hugged me, I think he hid the scissors in the cabinet.
Thankfully, that was the only really out-of-character madness I experienced when taking my first treatment of prednisone, but I hope it really shows the profound effect that the medicine can have on people. In addition to feelings of insomnia, mania, and hyper-productivity, my high doses of prednisone also made me feel anxious, panicked, and severely depressed. I didn’t even get out of bed some days. Even on the good days, it also caused excessive sweating, agitation, irritability, frequent urination (every 30 minutes!), extreme hunger, swelling (especially in my face), facial hair growth, blood sugar fluctuations, weight gain, and insomnia.
When I went back to see Dr. Sobrin for my follow-up appointment, I told her about my experiences with the side effects, and she was not surprised. Those side effects sounded typical to her.* Also, she was less concerned with the prednisone side effects and more concerned with the prednisone main effect: was it working on my optic nerve inflammation?
Thankfully, after running more tests and imaging, she was able to determine that it was working; my optic nerve swelling had greatly decreased in just one week on the steroids! Unfortunately, because the swelling was so severe to begin with, I had MANY more weeks of continued steroid treatment. I started steroid treatment in June 2017, and completed treatment in November 2017.
When I look back on that time period, I’m reminded of Britney Spears’ very public breakdown of 2007. She shaved her head in the middle of the night, and I feel like I could really relate to her—although I’m glad I just took scissors to my bangs and not an electric razor to my whole head! It gave me some humor and some perspective: if Britney Spears can survive 2007, then I can handle prednisone treatment!
Thanks for the life lesson, Britney!
*My experience was intense and scary, but thankfully the side effects were relatively normal, according to my doctor. The side effects dissipated as I lowered my dosage of prednisone. Always, always talk to your doctor about side effects you’re experiencing on any medication!
Problems associated with uveitis are relatively under-appreciated by the general population and ophthalmologists alike. Few people realize, for example, that the third leading cause of blindness in this country is uveitis.
I was diagnosed with uveitis in June 2017, when I developed a blind spot in my right eye. (It was kind of like when you look at a light bulb for too long, but it lasted for hours.) I consulted Google, diagnosed myself with a detached retina, and made an appointment with my regular eye doctor, Dr. Lampariello. He dilated both my eyes and took a good long look with his fancy eyeball machines. Then he pushed the machines to the side, sat back in his stool, and made very intense and serious eye contact with me.
“You have severe inflammation in both of your eyes… but what is more concerning to me is that both of your optic discs, in the back of your eye, appear to be swollen. This can happen when there is a mass in your skull…”
I honestly didn’t hear much after that. I was sent to some specialists, who were waiting in the office after-hours to meet me and to do some tests. I had to have an IV put in, with contrast put into my arm and simultaneous imaging done of my eyes. After a few hours, the specialists kind of shrugged their shoulders and sent me to the Massachusetts Eye and Ear (MEEI) emergency room. I was losing my vision, maybe had a mass in my skull, and the doctors I’d seen didn’t really seem to know what to do.
I got to the MEEI ER around 7:00pm, and I was seen pretty quickly (which was nice considering that I’d been at doctors’ offices all day). A few different doctors and fellows came to talk to me. They inspected the backs of my eyes, confirmed the optic nerve and optic disc swelling, and asked me one million questions. Have you been out of the country recently? (No.) Do you own cats? (No.) Have you been bitten by a tick? (No.) Do you have a cough? (Not really.) Any chance you’re pregnant? (No.) Do you use intravenous drugs? (No.) Any chance you have syphilis? (No.) Are you sure you don’t have syphilis? (Yup, I’m pretty sure.) Can we test you for syphilis? (Sure. Why not.)
They checked to see if I was color blind. They measured the extent of my vision loss. They put more contrast in my arm through an IV to get good images of the blood vessels in my eye. They did imaging of my optic discs and optic nerves, which basically required me to stick my face directly into a machine while bright lights flashed and the technicians said “Open your eyes wider, Miss Casey.”
Somewhere around midnight, they told me that I needed an MRI. I don’t know if it was the fear or the exhaustion that got to me, but I burst into tears. I had never had an MRI before, and on a good day, I am a very anxious and claustrophobic person. On a day where I was potentially going blind with a mass in my skull, I was a wreck. I will never forget the kindness of the nurses, who very sweetly gave me a very large dose of Ativan. Even though the medication was numbing most of my sharp nerves, I was still trembling and crying as I took off my jewelry: my gold cross that I have worn everyday of my life for almost twenty years and the engagement ring that I had just gotten two weeks prior. I held the jewelry in my hand for a minute before handing it to my fiancé. The cross and the ring felt so symbolic and heavy in that moment. Enormous elements of my life were in jeopardy. I was petrified of having this test, and even more petrified of the results, and I couldn’t even clutch onto my faith or love or family for comfort.
I laid down on the bed of the MRI machine. The technician fiddled with my IV as my arm shook from nervousness. I was asked repeatedly if I had any piercings or metal in my body, and for some reason, I kept thinking that maybe I had some unknown metal somewhere in me that I wasn’t aware of. I kept imaging this unknown metal being yanked through my flesh as I laid in the tiny MRI tunnel. I was given a hairnet, then earplugs, and then an enormous headset was put over my ears. My head was cradled in a brace, and then a mask came down over my face so that my head strapped down, motionless. I was given a little hand-held button to press in case of emergency. “Isn’t this entire situation an emergency?” I thought to myself as they pushed me headfirst into the tube.
The loud noises started banging and clanking around my head, and I thought about the possibility of having a brain tumor. Despite the Ativan I had taken, I was in a state of sheer panic. About ten minutes passed, and the loud noises continued. Then, a pause. Over the microphone, the technician asked if I was OK.
“Not really,” I said. “Can I please come out?”
“If we take you out, Miss Casey, then we have to start all over.”
“I’m just really scared,” I whispered. Tears flowed out of my eyes, down my temples, and into my ears. I couldn’t wipe them away.
“What can we do to help?” the technician asked.
“Can you give me a countdown? After each test? So I know how much longer I have in here?”
For the remainder of the test, I got periodic updates letting me know that each session of clanking, whirring, and tumbling would be 5 minutes, or 4 minutes, or 8 minutes. In total, I was in the MRI machine for about 45-60 minutes. I can’t really describe the feeling of relief I had when I got out of that machine, and went back to sit with my fiancé in the triage area of the emergency room. We had about another hour of waiting for the results, during which we shared a stale hospital sandwich and a bag of Doritos.
Around 1:30am, as we sat in a little corner of the MEEI ER, we overhead the doctor who had been treating me answer his phone. With a feeling that he was discussing my MRI results, we fell silent, eavesdropping on his end of the conversation.
“OK, so her scans are all clear?” he said. My fiancé and I audibly exhaled… yet a tightness remained in my chest.
A few minutes later, the doctor came to talk to us. He told me that my MRI was clear; there was no mass in my skull and no lesions on my brain. They had been checking for lesions that would indicate a Multiple Sclerosis (MS) diagnosis, a disease that commonly presents with vision loss. I silently thanked God for this reassuring news, but I also felt as vulnerable as ever because I was still losing my vision without any explanation.
The doctor asked if we could be back at MEEI for a 7:30am meeting with neuro-ophthalmology. Again, I thanked God for the blessing of living in downtown Boston. We went home for a fitful four hours of sleep, then were back at the hospital for blood tests, eye exams, bright lights, IVs, and X-rays. One test required the use of a contrast dye that made my urine look like highlighter ink. (Warning: Weird TMI picture below.)
After all these tests, the neuro-opthalmologist reviewed my file, looked at my eyes, and noted that I was an “interesting case.” He scheduled me for a lumbar puncture procedure at Mass General Hospital for a couple days later, and referred me to yet ANOTHER doctor who specialized in uveitis.
The lumbar puncture (also known as a spinal tap) was an interesting experience. I had to lay on my side with my knees tucked up against my chest while two doctors numbed my lower back and put a needle in between my lower vertebrae. They measured the pressure of my spinal cord fluid as it spurted out of my body, and then they collected a sample of the fluid for testing. When the procedure was complete, I found it kind of funny that I just stood up and walked out of MGH (with my fiancé’s assistance of course).
I thought the procedure itself would hurt more than it did. In hindsight, the anguish I felt related more to the concept of my spine being punctured. The pain set in as we waited for an Uber outside of the hospital; the numbing medication was fading and my angry muscles reacted to having been thoroughly stabbed. I had a hard time walking and bending for one or two days, during which I found out that the results of the lumbar puncture were normal. There was no neurological explanation for my vision loss…
… which was worsening by the day. The small blind spot that I’d developed over a week prior had gotten larger. It was a big, empty blob in my right eye’s field of vision. It was not blurry, it was not dark, it was not light. It was just nothing. It was blindness. I assimilated my vision to what someone might see if they had a piece of Swiss cheese over their face — only pockets of vision through holes. What I could see was blurry, and colors were dimmer, less vibrant. It was disorienting, as my vision was unbalanced. At that point, the inflammation was much worse in my right eye than my left eye; however, the doctors had noted that both of my eyes had inflammation. I woke up every morning, wondering if a blind spot would develop in my left eye, too. I had no answers, no explanation, no idea what was happening and if it would get worse and claim ALL my vision.
Thankfully, just a couple of days later, I was able to get an appointment with Dr. Lucia Sobrin, a uveitis specialist at MEEI. She is a petite woman with dark, serious eyes. When I first met her, she scared me. She was stern and asked me dozens of questions in rapid-fire succession. She never smiled. I knew my situation was serious, but the severity with which she studied my eyes, my test results, and my case alarmed me. As I think back now, I’m grateful for her concentration. I credit her with saving my vision.