When I was first diagnosed with uveitis in 2017, it seemed like doctors tested me for everything under the sun. I had tests done on my blood, urine, and spinal fluid, as well as x-rays, MRI scans, CT scans, and images of blood vessels in my eyes. Specialists were looking for infectious blood diseases, systemic disorders, and autoimmune diseases; they were so determined to find a cause for my vision loss. But all the tests were fruitless, and my uveitis was considered idiopathic.
Like my doctors, I was eager to find a cause for my uveitis. If a true cause for the vision loss could be found, then maybe there would be a better chance to treat it or cure it, and a good chance of preventing it from happening again in the future. In thinking about life circumstances that preceded my uveitis flare, I talked with my doctors and questioned whether stress could have played a part in my illness. My doctors answered “Absolutely.”
Now, it is important to note that I have a flappable personality. I freak out easily. I am nervous and anxious and paranoid. I am a worrier, not a warrior. I am Type A. Stress is not a stranger to me. Prior to my first uveitis flare, I had traveled across the country, and I am not a good traveler. I had also had an incredibly busy work event, with a hectic schedule. I did not manage my emotions well during this time; I was not sleeping well, I was not eating healthfully, and my mental health was not a priority for me.
In 2018, when I had a second flare of uveitis that corresponded with international travel, another hectic work occasion, and the final stages of wedding planning, I again made a connection between illness and stress. As I struggled with the side effects of prednisone, I vowed that I would be healthier. I would exercise regularly; take proper vitamins and supplements; meditate, stay calm, and “manage my stress” once and for all. I talked with my doctor about anti-inflammatory foods, and dabbled with paleo and keto diets. I saw some successes, and my body did feel happier with every healthy choice I made. However, I still struggle with keeping my life, and my body, stress-free.
This year, I was struck with a third bout of uveitis. The flare came on less than a month after my father suddenly passed away. The death of such a close and beloved family member is without question the most stressful experience I’ve ever endured. It doesn’t surprise me that my body reacted with illness. Grief is a powerful and intense emotion with so many physical effects on the body. It really amazed me how thoroughly I felt the pain of losing my Dad, and how death permeates every aspect of life. It has been extraordinarily difficult.
Yet as tough as it has been, I nevertheless feel motivated to push through, to keep going, and to not let the grief take over. It’s a balancing act, I have learned. Grief needs a place in your life, because grief is, in some ways, a demonstration of love. You grieve so heavily because you loved so much. You must feel every bit of the sadness and the loss. The emotions have to come out, have to be felt. Allowing yourself to grieve, to cry, and to feel is self-care, and in the end it reduces stress, too. I had a hard time reconciling that, because my deepest moments of grief and crying and mourning felt tremendously stressful. Yet holding in the emotion or avoiding it had much worst consequences, like panic attacks and depths of depression.
In the toughest moments of grief, I had to work harder than ever to be healthy, to practice self-care, and to reduce stress. Some habits that I found important to maintain were:
- Talking with my doctors and a therapist. Mental health is just as important as physical health. In moments of high stress and grief, your doctors and counselors are allies. There are so many resources and options for taking care of yourself, and it’s not just medication. I don’t like to use medication, so my doctors and therapist help me find natural ways, like talk therapy and meditation, to feel better.
- Maintaining a healthy diet. Listen to your body. I have learned that gluten, dairy, sugar, and alcohol usually make my body feel bad. There can be a tendency to rely on food, treats, or alcohol during times of stress, which isn’t helpful. (I am so guilty of this!) If you really listen to your body and consume food and beverages healthfully, it can make a noticeably positive difference.
- Consider vitamins and supplements, but talk to your doctor first. My doctor told me that I sometimes get a Vitamin D deficiency, which can worsen seasonal depression and weaken the immune system. I also have talked to my doctor about the benefits of fish oil and turmeric supplements for inflammation. When I take all of my vitamins on a regular basis, I noticed that I feel a lot better!
- Hydrate! I struggle with this, and I know a lot of other people do, too. Dehydration makes your body feel crummy, and it can affect your mental health too! I carry a 32-ounce water bottle with me every day and I aim to drink between 100-120 ounces of water every day. I limit coffee, and I avoid soda and sugary drinks. Water is life!
- Exercise. I struggle with this, too, but I’ve been told that even 30 minutes of exercise each day can make an enormous difference. It’s important to find an exercise that you like. I recently fell back in love with Zumba because it makes me laugh. All the dancing feels more like fun than exercise, so I try to do that a few times during the week, and I also try to hit 10,000 steps everyday.
- Meditation and/or Yoga. I learned about Kripalu yoga during a mindfulness-based stress reduction class. It’s easy and gentle, and made me feel so relaxed. I also learned about the benefits of meditation. There are so many apps out there that offer guided meditations. I use Insight Timer, but I know others who love Breathe and Calm. Five to ten minutes of meditation every day can bring down your blood pressure, calm anxiety, and reduce stress.
- Practice self-care. Listen to yourself and do what makes your soul happy! Some examples include: increasing positive self-talk, laughing with a friend, establishing healthy boundaries, saying no to stressful plans, staying home and watching your favorite show, taking a bubble bath, getting a massage, or going for a long walk in a beautiful nature setting. As long as it’s healthy and it makes you happy, you should make time for it!
- Sleep. Your body needs rest more than ever during stressful times, but unfortunately, stress can cause insomnia. I try to combat nighttime restlessness with a cup of herbal tea, limited time on my phone in the evenings, and a consistent bedtime routine.
It’s so important to take care of our bodies. We only get one! And mental health affects overall health, so don’t ignore or shrug off feelings of anxiety, stress, or depression. We have to be our own best advocates for health if we are going to make it through this crazy life! ❤️
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.uveitis.org
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.
(To be continued…)
“Sometimes that mountain you’ve been climbing is just a grain of sand”
This weekend, my husband and I went on a roadtrip from Boston to Baltimore to see our very good friends. We had the trip planned for a while, and we were SO looking forward to it, so we decided to go despite the health troubles I’m having. I was VERY nervous about it, but my husband is my rock, my calm, and my warrior. He confidently reassured me that everything would be OK… To be honest, I didn’t 100% believe him, but he is the logical, rational, pragmatic one in our relationship. So I challenged my anxiety, I stepped out of my comfort zone, and off we went to Baltimore.
Some things that I was nervous about:
- What if I had a complication with my vision?
- What if I got really sick from my medication?
- What if the car broke down?
To me, these were very real concerns, and the consequences felt almost catastrophic:
- Being vision-limited far away from home and from my doctors felt so scary!
- Getting sick at home is uncomfortable; getting sick while traveling feels like a nightmare.
- The car breaking down on the highway could be dangerous AND expensive!
So, with these anxieties and potential outcomes, I had two options:
- Stay home
- Push through!
Like I said, we decided to go. I pushed through my anxieties (of course, with my sweet husband’s support), and you know what happened?
EVERYTHING WAS REALLY OK!
- My vision was stable.
- I did get a little sick from my medicine, but I managed it.
- The car didn’t breakdown.
In fact, there were some additional outcomes that I hadn’t obsessed about:
- It was so wonderful to spend time with our friends, and my heart filled up with happiness.
- I slept in *the* most comfortable hotel bed ever!
- We explored a new city and made amazing memories.
If we had stayed home, we would’ve missed out on all that!
Now, for a couple of disclaimers:
- I have had generalized anxiety disorder my entire life, and it has been a CHALLENGE. Somedays, anxiety just takes over, and it is in my best interest to NOT push myself. Anxiety doesn’t mean you’re weak; sometimes it’s a sign that you’ve been strong for too long! It’s important to balance, learn yourself, and love yourself no matter what. Somedays you are kind and gentle, and somedays you find the strength to push yourself. Optimism that things can be really OK can help you muscle-up that strength!
- I am beyond blessed to have my husband. I know how fortunate I am to have him as a partner and enormous source of support. I remember the days before dating him when I had to struggle on my own, and there were some really dark times. For anyone who is feeling alone, I encourage you to reach out and make connections: friends, family members, doctors, counselors, support groups, church communities, and hotlines are all out there as resources. It can be hard to reach out for help, but you don’t have to go it alone!
The next time that I’m feeling really nervous and anxious about a situation, I hope I look back on Baltimore for perspective. Instead of thinking, “what if something goes wrong?” maybe I can think “what if everything goes right?”
Weekend in Baltimore? I made it!
It’s OK to not be OK.
I thought about starting this blog as a New Year’s Resolution in January. (It’s now October, so that resolution is going pretty well, huh?) It has been a tough year. To be honest, life has been tough. I’ve been through some stuff.
But I think everyone can say that, right?
Everybody has a story.Oprah Winfrey
And there’s something to be learned
from every experience.
My New Year’s Resolution was to share my voice with the world. Like I said, I’ve been through some stuff. We’ve all been through some stuff. And I think we are all just trying to make it.
Maybe you’re trying to make it through the day. Maybe, like me some days, you try to just make it through each hour. Maybe you’re the parent of a newborn and you’re trying to make it through the night. Maybe you’re going through a health crisis, and you’re trying to make it through alive. Maybe you’re going through a career crisis. Maybe you’re going through a mid-life crisis. Maybe I’m going through a mid-life crisis, and that’s why I started this blog.
Maybe you’re going through another kind of difficult life circumstance. Maybe you’re newly married. Maybe you’re newly divorced. Maybe you’re trying to make it on your own. We’ve all got our stuff. We’re all trying to make it.
Through this blog, I will share a bit about what I’m trying to make it through, and I will share what I have made it through, as a sort of motiviation to myself and to others. We’ve all been through stuff, and we’re all trying to make it. Maybe, just maybe, this little corner of the universe, this little corner of the internet, can be a space for shared motivation, for connection, for healing, and for growth.
Disclaimer: I am not an expert. On anything. I hope to share experiences, maybe a few tips, and probably a few laughs, to a bunch of other human beings who can commiserate on making it through this crazy, beautiful thing called life.
Please share feedback via comments, email, or social media. I really don’t entirely know what I’m doing. I have about 12 weeks left of the year to come to some kind of resolution to my resolution.
I think I can make it. 🙂