Q & A with George of “A Flower in their Eyes”

May 18, 2020.Reading time 7 minutes.

I “met” George online through this website actually! She’s got my same diagnosis of “multi-focal choroiditis,” but with panuveitis, which means that her inflammation is all throughout her eye. (See Uveitis Basics for how uveitis is diagnosed.) George also has a website about uveitis and is a talented artist! Here are her answers to my questions:

About you:

Name and age: My name is George Alvarado and I am 19 years old.

Last book you read: I am currently reading Pachinko By Min Jin Lee.

3 things you can’t live without during #stayathome: my 3-Year-old dog Misty, My Bose speaker, and my acrylic paints.

*“I painted the eyes because I have always had a passion for the arts and it was a great way for me to express myself.” George Alvarado Rivas*

About your uveitis:

What type of uveitis do you have / what is your diagnosis?

I have recently changed my Ophthalmologist and he has changed my diagnosis to Multifocal Choroiditis and Panuvietis. Since I took my test again it seems as though my M.C.P. is Idiopathic.

How did you know something was wrong? When were you diagnosed and how long did it take?

I started to notice gray spots in my vision and thought it was best to tell my mom. I soon had an appointment with my optometrist after hearing my systems and concerns. We then ran some basic vision tests and she decided to send me to the emergency room. She was afraid that there was a possibility that my Retina was detaching or that I had developed liquid behind my Retina. In the emergency room a specialist came in to see me and she also suspected that I might just have liquid behind my retina. I was told that this can be caused by stress and it could have been a possibility since I had just taken my finals for my first semester of senior year. I was sent home to rest and wait for an appointment with the Ophthalmologist. I have also prescribed some eye drops but I can’t seem to remember the name of the prescription. About a week after my visit I was back in the emergency room with extreme light sensitivity. Unfortunately, the emergency room sent me back home telling me there was nothing they could do. I went home with fear and pain. This was when I knew there was something wrong.

How are you currently treating your uveitis? What other treatments and/or procedures have you tried?

I am currently taking Cellcept, Prednisone, Cyclopentolate 1% eye drops, and Prednisolone eye drops. I have also tried methotrexate and another medication that I am currently blanking on.

What is the hardest part of having uveitis for you?

The Hardest part of all of this has been accepting that there is a possibility of losing my vision at any time. What has also been hard is the lack of support and awareness there is for Uveitis.

How has having uveitis changed your life?

Being diagnosed with Multifocal Choroiditis and Panuveitis has changed everything for me. I had set a path for me to follow but I had to change my plans to accommodate how my M.C.P affects me.The Plans I had to change was mainly schooling and career choices. I had wanted to attend my high school and go to all the senior events but I sadly couldn’t due to the photophobia. I was able to finish school by taking Independent studies and was able to finish 2 weeks early. I was able to walk the stage with all my friends and graduating high school was something important for my family. My parents both immigrated from El Salvador to the U.S when they were young but were not able to graduate from high school. I had also hoped to go to Community College in the hopes of going to Forensics or Liberal art. This was not possible since my M.C.P was still out of control and I needed to accept my diagnosis. I was in a deep depression and I didn’t see a future for myself. I have decided to look more into Liberal arts, hoping there would be a major or a career choice that can help my advocate for the Uveitis community.

I have recently created an Instagram account called @theflowerintheireyes where I share pictures of my eyes and a little bit of information about Uveitis. There is sadly a lack of representation and awareness about Uveitis. It took me almost a year to find a community and the people I follow on Instagram. I would not want anyone else to feel as alone and hopeless as I did when I was diagnoses. I had gotten inspiration for the name of my mother. On my first doctor’s visit, my mom was able to see how my pupils were deformed and she said that one looked like a snowman while the other looked like a flower.

Visit George:

Instagram: theflowerintheireyes
Website: The Flower In their Eyes: For the Eyes of Yesterday

Q & A with Lorelei

April 25, 2020.Reading time 7 minutes.

This week, instead of a topic from my perspective, I thought it might be interesting to read about someone else’s experience. Lorelei has anterior uveitis, associated with Juvenile Idiopathic Arthritis (JIA). I’ll link some sites about JIA at the end.

I met Lorelei’s dad through work before she was born. I remember how scary it was when Lorelei was diagnosed and I couldn’t believe that she also had such a “rare” disease. 10 years later we even see the same doctor. Meeting her, you would never guess she battles an autoimmune disease; it definitely isn’t stopping her!

Lorelei Burnett, 13

About you:

Hobbies: Playing Soccer

Last book you read: Unpregnant

3 things you can’t live without during #stayathome: As much as I hate to say it my phone, a soccer ball and my dogs

About your uveitis:

What type of uveitis do you have / what is your diagnosis? Is your uveitis associated with another condition or disease?

I have Juvenile Idiopathic Arthritis (JIA) which caused my uveitis.

How did you know something was wrong? When were you diagnosed and how long did it take?

When I was first diagnosed I was three years old and my parents had noticed that my eye was red and inflamed. They took me to the doctor for what they thought was pink eye, but when the antibiotics for pink eye didn’t work and the different allergy medications they tried didn’t work, they finally decided on sending me to a child ophthalmologist who was the one who diagnosed it.

How are you currently treating your uveitis? What other treatments and/or procedures have you tried?

When I was first diagnosed I had two surgeries one to remove the lens in my left eye which had a cataract on it. ( At that time I was also one a lot of different steroids which with uveitis can sometimes cause cataracts.) And then another surgery to remove scar tissue from the first surgery. Currently I take Humira which is an immunosuppressant which keeps me from having flare-ups. It’s a bi-weekly injection that I can give myself at home. I also take methotrexate which is a chemotherapy drug which stops me from having reactions to some of the other medications. In the past I was on remicade which you have to take intravenously so it was really hard to go to the hospital and miss so much school.

Do you have flares? What are they like?

When I’ve had flares in the past for me I’ve never really been able to tell when they were happening, my JIA, except for when I was really young, has only affected my eyes so for me there is really no tell-tale sign that I’m having a flare-up. They’ve happened in the past when they’ve been trying to wean me off my medication.

What is the hardest part of having uveitis for you?

Honestly I’ve been really lucky it really doesn’t affect my daily life. I guess one of the hardest things in the past was having to go to the hospital sometimes having three weeks to get my IV’s. It was hard because I missed a lot of school between IVs and opthamologist and rheumatologist appointments. But since I’ve switched to at home injections it’s been so much nicer. One thing that’s always been super hard is taking the methotrexate when I was younger it was always a battle between my parents and I to get me to take it. It’s really hard on your body and I would end up throwing up most of the times I took it even though I was at such a low dose.

How has having uveitis changed your life?

Aside from doctors appointments and medication it really hasn’t. I can still play sports and do everything someone without uveitis would.

Do you research uveitis (causes, treatments, etc) or get all your info from your doctor?

I’ve researched a lot about it in the past, I actually did a whole presentation on uveitis and JIA for one of my classes this year.

Lorelei”s Presentation Download

Do you think people know about uveitis? What do you wish people knew about uveitis?

Honestly I don’t think a lot of people know about it. I’ve tried to explain it to my friends and when they hear about my surgeries they either get grossed out or I get met with blank stares. I really want people to know that kids get uveitis and arthritis too, in fact JIA is actually more common than childhood type 1 diabetes.

Anything else to add?

I guess I just hope that anybody going through a diagnosis or living with it right now knows that they’re definitely not alone. I also hope everybody is staying safe and staying healthy right now at this crazy time.

Makeup and Uveitis

April 13, 2020.Reading time 6 minutes.

We’ve all been staying home for a few weeks now and likely have heaviness in our hearts, so I thought I’d write about a less serious topic. [If you feel like you want to read about COVID-19 as it relates to eye health, head to the homepage where I’ve added a section with coronavirus-related links.]

A question I’ve seen come up in online groups is: “should I wear eye makeup if I have uveitis?” Frivolous and unimportant to some, but a valid question for many of us!

First off, can makeup cause uveitis? No. Uveitis is not an infection and is not caused or exacerbated by wearing eye makeup. Some forms of uveitis are caused by systemic infections or diseases, but that’s a different topic, discussed here.

If you have dry or sensitive eyes, wearing eye makeup may worsen that condition, particularly depending on the makeup ingredients (Impact of Makeup on Dry Eye Disease).

If you’re wearing expired makeup, using dirty brushes or applicators, or sharing makeup, there is a risk of infection or conjunctivitis. This is not fun in itself, (who has toddlers with pink eye?! just me?) but when you have uveitis, it can complicate matters.

For example, those of us who’ve had a trabeculectomy run the risk of blebitis. I once got the worst case of conjunctivitis on a trip to the ocean (see previous sentence about toddlers). I had to go to the doctor to make sure my bleb had not been affected. Luckily it had not. Any opening on the surface of the eye leaves room for infection to enter the eye.

Should you get an infection, it is advisable to throw all of your eye makeup away and start fresh. If you wash your brushes exceptionally well, keep them. When in doubt, toss them too. This is inconvenient and expensive (or an excuse to go shopping…). Sometimes infections are inevitable, but the best way to avoid them is to keep your makeup and tools clean and Do. Not. Share.

I’ve always loved wearing makeup and being diagnosed with uveitis hasn’t changed that. It has, however, changed a few of my makeup-related behaviors.

“No makeup” times

Let’s start with when I don’t wear eye makeup. 1) I don’t wear eye makeup to my ophthalmology appointments. 2) I don’t wear makeup after eye surgery until my eyes have healed and I’ve had follow-up appointments. 3) I don’t wear eye makeup after injections until my course of associated antibiotic drops is complete. If I have a hemorrhage, I typically wait until that has cleared before I start wearing eye makeup again. If I had anterior uveitis, I probably wouldn’t wear eye makeup when I was having a flare.

Keep it clean

When I wear eye makeup, I wear clean (as in, non-toxic) makeup. I used to just purchase what was trendy and in cute packaging. Now I research extensively before buying any of my cosmetics. Glitter is out since being diagnosed with uveitis. I don’t buy anything with parabens or phthalates (endocrine disruptors). I check for triethanolamine (TEA) and diethanolamine (DEA) in mascara and eyeliner. TEA and DEA are ethanolamines that break down into nitrogen, which can form nitrosamines. Nitrosamines are carcinogenic (may cause cancer), according to the Environmental Working Group (EWG)’s Safecosmetics.org.

Another ingredient that I personally avoid, but is very pervasive, is talc in eye shadow. According to the EWG, some talc contains carcinogenic asbestos, although it’s required by law to be asbestos-free. Unless you can verify the talc is asbestos-free, it should be avoided. Talc is also an irritant of the eyes for many people (Is talc in makeup safe?).

Ilia Beauty – The Necessary Palettes (Talc Free)

These are my current favorite clean makeup brands:

Ilia Beauty – The Necessary Eye Shadow Palettes, Clean Line Gel Liner, Limitless Lash Mascara,

Jane Iredale – Pure Pressed Eye Shadow, Eye Pencil, PureLash Mascara

Mineral Fusion – Eyeshadow Trios, Eye Pencil, (didn’t love the mascara)

Thrive Causemetics – Infinity Waterproof Liner, Liquid Lash Extensions Mascara, (eye shadow contains talc as the second ingredient)

Tarte Cosmetics – Lashpaint Mascara, (eye shadow contains talc as the second ingredient)

I.T. Cosmetics – Talc-free eyeshadow

Out with the old

I previously mentioned not using expired makeup. Throw out mascara every 3 months (I attempt to sync mine with changing seasons so it’s easy to remember). Toss eyeliner once a year and eye shadow at least every two years. (When to Throw Away Your Makeup, According to a Dermatologist). If it looks bad, smells bad or you can’t remember when you bought it, it’s probably time to say goodbye.

Additional tips for How To Use Cosmetics Safely Arou nd Your Eyes

Coping when a treatment fails

March 30, 2020.Reading time 9 minutes.

As the calendar turned to 2020, I decided that my word for this year, for this decade, would be “stability.” I spent the last decade in a state of flux (uveitis diagnosis, getting engaged, buying two houses, having two kids, leaving a job I’d been at for 10 years). I was in and out of procedures for my eyes and pretty consistently trying various cocktails of medications. More recently, intraocular steroid implant injections enabled me to be on a “steroid-sparing” dose of 5-10 mg of prednisone. A bone density scan in late 2018 had shown osteopenia in one of my hips. I’ve since added weight lifting and increased my calcium intake, however, my ophthalmologist (and I) would prefer to get me off of steroids. My naturopath at the time suggested I try hydrocortisone which more closely mimics the body’s natural cortisol. I got a Yutiq injection in the fall and began to taper down steroids in December.

In January, I started a 30-day online yoga program and was feeling fantastic about my health and my goals. Then in the third week of the month, I was driving to work and noticed a smudge on my glasses. When I took them off to clean them, the smudge was still there. My heart dropped to my stomach. At the office, where I don’t need glasses for my computer work (I have a range between reading and distance that is most clear without glasses), I couldn’t really notice anything so I figured I must have imagined it. Yutiq is supposed to be effective for up to three years. It’d been three months.

The next day was a rare snow day in the Pacific Northwest. Out playing with my family, I started seeing black spots mixed in with the white snowflakes falling. I tried not to focus on them but to be present with my sons. At dinner, the blur was there. A new blind spot. I literally could not believe my eyes. I hadn’t developed a new blind spot in my visual field since I was first diagnosed with multifocal choroiditis. How could I have let this happen? I messed with the formula; I tried to taper the prednisone. In my quest for overall health stability, I had inadvertently destabilized my treatment.

I finished the dinner my husband had made and did the dishes, choking back tears, listening to my kids playing in the next room. We had had such a fun day, I couldn’t stand to be the one to bring it down. I went upstairs and, swallowing 30mg of prednisone, contacted my doctor. She responded that evening, as I am so grateful she always does, far beyond the call of duty. We formulated a plan until I could get into see her. Unless of course, things got worse, then I was to see someone immediately.

The next 9 days crawled by. I broke down in my car at lunch. I did yoga. I tried to breathe. I wanted stability in 2020 and I got two weeks. Was I becoming resistant to medication? Was it finally happening?

In the doctor’s office, we got more bad news as the optic photography revealed that my left eye was active as well. So, time for Plan B., or more like Plan LMNOP at this point.

Receiving a disease diagnosis is not something you plan on. It can feel almost like the death of your old “healthy” self, depending on the severity. It’s hard to let go of expectations of the way life “should” be. And then when treatments stop working or fail to work, it is very discouraging. (The Betrayal of Expectations: Coping When Life Doesn’t Go to Plan. This is a good read about coping. Not trying to equate failure of one treatment with the death of a spouse… but feelings are relatable.)

Keep in mind, there are various reasons a medication can be ineffective (What if a medication doesn’t work?):

Time to “kick in”: Some medications take days, weeks or even months to build up to the proper levels and begin working in the body. Some take even longer to reach maximum efficacy.
Special Instructions: Labels and instructions will indicate if the medication is to be taken with or without food, at a specific time of day and where the medication should be stored.
Interactions: Many medications interact with other medications, foods or other substances, which can impact effectiveness. Check a website such as www.drugs.com for interactions with your medication.
Dosage: Perhaps your dosage is off and more medication is needed to be effective.
Just not a match: Not all medications work for everyone.

Currently, there are a number of treatments for uveitis available, which can be used individually or in combination (When Your Uveitis Treatment Isn’t Working).

“When one looks carefully at individual drugs and different regimens, Dr. Jabs said, any one drug works about 50 to 70 percent of the time, and any approach works 70 to 85 percent of the time, but nothing works 100 percent of the time. “That’s why it’s important to have access to someone who knows how to use multiple treatments and knows when to move on to drug 2 or drug 3 if the first drug doesn’t work. You can’t rigidly stick with a single approach and expect it to work with everyone. This is where you move out of the science and into the art of medicine.” “
Doran, Marian. Noninfectious Uveitis: Optimizing Drug Therapy. AAO EyeNet Magazine, 2012, https://www.aao.org/eyenet/article/noninfectious-uveitis-optimizing-drug-therapy.

After discussions of the pros and cons of several medications, some of which I have taken before, some of which I have not, I started on Cellcept in January with a pulse of prednisone. A month in, there were still signs of activity at my appointment. The antimetabolite class of drugs takes at least six to 12 weeks to reach the starting point of efficacy. It’s important to give the medication time to work.

We decided to do an Ozurdex injection to allow me to taper down to 10mg of prednisone during this COVID-19 pandemic. Now I can space out my appointments a bit and wait to see if my body responds to CellCept.

If not, then it’s on to Humira or another combination of options. Flexibility is easier when you don’t have a choice but the road is still not easy. Hoping this path is the right one even if it’s not the final destination.

Immunosuppressed in the Pacific Northwest

March 16, 2020.Reading time 10 minutes.

I had another topic planned for my post, but it seemed strange not to talk about the virus that currently has our lives held hostage here in Washington State and all over the world. Since many uveitis patients are on treatments that work by suppressing the immune system, diligence when it comes to health and not getting sick is never far from our minds. However, now with the Coronavirus (COVID-19) pandemic, the immunocompromised are a living buzzword, seemingly surviving at the mercy of others.

When the immune system is suppressed or compromised, it makes the body more susceptible to infection and/or more susceptible to a more severe or long-lasting reaction to an infection (If You’re Immunocompromised, You Are at a Higher Risk of Coronavirus—Here’s What That Means).

This is what I’m doing to protect myself and my family.

Avoidance – Social Distancing

I go through my day and see what I can and am willing to change to better protect myself. Some folks are completely self-isolating/quarantining, but I don’t feel the need to do this per se. I have continued to shop, albeit choosing local, smaller shops (who desperately need support right now!) for the most part. Take advantage of curbside and in-store pickups where physical interactions can be limited. Starting March 17th, this will be the only option for restaurants in Washington State.

Even simple changes in your routine can make a difference. For example, at my place of employment, probably a quarter of the employees are female. So, I have decided to not to use any unisex restrooms to cut down on my chances of contracting the virus in the bathroom.

Social events and travel plans have been canceled or postponed for us. We are mostly staying around the house, going on walks and bike rides to get fresh air.

And of course, washing my hands and my sons’ hands for 20-30 seconds every time we return home, use the bathroom, etc. Daycare is still on for them at this time, so we scrub, scrub, scrub!

Treatment Plan – Medications

Recently, my uveitis has become active once again and I started CellCept (mycophenalate) and a pulse of prednisone, both of which suppress my immune system. The timing.. not so great. My husband and I have driven into Seattle every two weeks for the past month and a half to attempt to get my uveitis back under control. Last Friday, my doctor injected an Ozurdex (intravitreal steroid implant blog post here) so that I can start to taper down the prednisone while the CellCept ramps up (hopefully) to full efficacy. Talk to your doctor about changes you can make in your treatment, if any, to lower the dose of systemic medications.

It’s also a good idea to get a bit of a stockpile of medication in case of shortages or the need for isolation. Talk to your insurance company. I’ve found that my insurance will cover a 90-day supply online (https://www.express-scripts.com/), whereas only a 30-day supply at my local pharmacy is covered.

Have a conversation with your doctor about a plan for if you are exposed to or contract the coronavirus. This is important. Despite best efforts, many of us will contract this virus; there is no shame or blame to be had. Contact your doctor right away if you are experiencing symptoms.

Diet and Supplements

One of the most important factors in your body’s ability to respond is what you feed it. Now is a great time to work on adding in more of the “good stuff.”

Boost the body’s natural detoxification systems with:
Cruciferous vegetables – at least 1 cup daily – including broccoli, kale, collards, Brussels sprouts, and cauliflower
Garlic cloves – 2 to 3 every day (or take a garlic supplement)
Organic green tea in the morning instead of coffee
Fresh vegetable juices – including celery, cilantro, parsley, and ginger
Prepared herbal detoxification teas containing a mixture of burdock root, dandelion root, ginger root, licorice root, sarsaparilla root, cardamom seed, cinnamon bark, and other herbs
High-quality, sulfur-containing proteins including eggs, grass-fed whey protein, garlic, and onions
Bioflavonoids which are found in berries and citrus fruits
Celery to increase urine flow and aid in detoxification
Cilantro
Rosemary, which contains carnosol, a potent booster of detoxification enzymes
Curcuminoids (turmeric and curry) for their antioxidant and anti-inflammatory action
Burdock root
Chlorophyll found in dark-green leafy vegetables and in wheatgrass
Avoid simple sugars. Sugar and refined grains that turn into sugar can suppress your immune system. Stick to real, whole, fresh foods. Limit refined sugar and flour.
Supplement with Vitamin C.
“Mark’s Picks,” Mark Hyman, MD. March 13, 2020

Other immune system boosting supplements are Vitamin D and Elderberry. Always talk to your doctor and check interactions with medications and other supplements before starting something new. See the Healthy Vision page for more diet information.

Sleep

Telling someone to get adequate sleep while on prednisone during a pandemic is a bit like telling them to “sleep when the baby sleeps” (and do laundry when the baby does laundry ;)). Sort of an oxymoron from my perspective. None the less, the body repairs itself while sleeping and deep sleep is vital to the immune system. Force yourself to stop scrolling through your feed of out-of-your-control news (ideally 30-60 minutes before lights out) and get to bed.

Personally, while on any dose higher than 10mg of prednisone, I take melatonin an hour before bed every other night (let’s be honest, every night lately). There have even been studies that melatonin may be beneficial in reducing inflammation associated with uveitis, so if it works for you, that’s a win, win! Melatonin as a Therapeutic Resource for Inflammatory Visual Diseases (2017); Treatment with melatonin after onset of experimental uveitis attenuates ocular inflammation (2014); Melatonin May Save Eyesight In Inflammatory Disease, Study Suggests (2008).

Lifestyle

Continue to move your body and get exercise! If I am feeling a bit under the weather, I make sure to take it easy and walk or do at home yoga instead of more intense weights at the gym when I’m on immunosuppressants (my gym avoidance will start this week). Sweat out toxins in a hot bath. Use a diffuser or apply essential oils to calm and support the immune system (4 Aromatherapy Recipes to Boost Your Immune System). Use extra time at home to work on or start a hobby. Or just sit and relax. I’m choosing lighthearted reading and media for pleasure when the news is so heavy.

Being informed, but limiting news and social media exposure is usually what I aim for, but especially now when a simple click can lead down a path I may be emotionally unprepared for at any given time. There are plenty of articles about How To Calm Your Anxiety About The Coronavirus.

Stay safe and stay connected even when not possible physically. It takes a village to save the village; encourage those you love to be socially responsible. Do what you can do, and that is all you can do.

Update: 3/17/2020 – As the number of confirmed cases in my area continue to increase, I am now working from home and my sons are at home as well. Things are changing fast and it’s been an emotional week (and it’s only Tuesday!). Thankful for the ability to work from home.

Living With Uveitis

Tag: #livingwithuveitis