Conversation of the Week: How to Maintain Hope While Exploring Dry Eye Treatment
Dry eye disease can make us feel like our lives are over. Sometimes it’s hard to maintain hope when we are in pain or when we’ve tried different treatment options that fail.
I remember my rapid onset of severe symptoms well. My eyes were dry, gritty, and painful. I thought that a quick trip to my eye doctor would solve everything, but it didn’t. After weeks and months, I started to lose hope. I tried to stay mentally strong while I researched treatment options and found a dry eye specialist.
Once I found one, different treatments like Xiidra, autologous serum tears, intense pulsed light, Manuka honey gel, and Cequa helped over time. Some things that I tried didn’t help, and I had days that were downright disheartening.
What helped keep me positive and hopeful was support from my family and friends, support from my dry eye community, and my relationship with God. Those things were critical in helping me realize that I am loved, that my life is more than this disease, and that my pain can have a purpose. I’m also hopeful that with time, new technologies will be developed that can be helpful to our community. In the meantime, I have found a place of stability, and though my eyes do not feel normal still, I choose joy today.
How do you maintain hope while dealing with dry eye on a daily basis and exploring different treatment options?
like you, I choose to find joy in each day. My faith in God and family support gives me hope. Sharon Moore, patient leader that’s great to hear, Sharon. Thank you for sharing. Erica, Team Member
I too depend on my belief in God. I also try to stay positive. But on the days I'm having a bad " eyes" day, I also depend on support from loved ones and this community. I also choose to find joy in this day.
having the support of family and friends helps so much. I believe we can choose joy even in bad circumstances. Thanks for sharing your thoughts. Regards, Sharon Moore patient leader on bad days, it definitely helps me as well to have the support loved ones and others who are suffering with dry eye and understand exactly what I am going through. Thank you for sharing. - Erica, Team Member
I have a very, very bad case of dry eye. Back in 2015 I had cataract, lens and partial corneal transplant surgery because at my eye doctor appt. I couldn't read anything, even the big letters. The doctor just told me I was going to see the surgeon. I was done with the appt. In 5 minutes. After that, my eyes have never been the same. Dry eyes all the time. Nothing helps me. Xiidra made my eyes burn so bad. I think I was allergic. I take a Prednisone drop every day. Restasis prescription, 2 a day and over the counter Refresh about 6–7 times a day. I use hot compress when I can't stand the pain at night. But my point is, NOTHING WORKS. I have to keep my house dark. I do have to nap a lot because my eyes just need to close and take a break from seeing anything. A 1-hour nap can do wonders for my eyes. I keep going on. I only have a brother left in my family. And my son and his wife. Also, my boyfriend. On top of that, I have status migrainosus, which is constant migraine and severe. I also have TIA's that last between 1 day and a matter of hours. My heartbeat is in my head 24 hours a day. I have ringing in the ears. And Vertigo. I have reversed GERD. I have it sitting up, not laying down. The only way to fix it is to have the weight loss surgery to replace the valve, but you have to be thinner for it to work. I have lost 30lbs so far. I also have a hernia that pushes up into my stomach. After all that, I still keep ongoing day by day. I live for my son and his wife. They just had their first wedding anniversary. He is a chef. I love them so much. Thanks for letting me get this out. Everyone get better.
uff, you have certainly been through a lot with your health. Chronic dry eye, status migrainosus, GERD, and TIAs are a lot to endure! I hear how frustrating it feels that nothing you have tried has made a positive difference for the dry eye symptoms. I'm glad you are able to take regular naps to rest your eyes! It sounds like that offers you a bit of relief. In case it would be helpful, we also have a sister site dedicated to support and information for living with migraine that you might like to visit. [migraine.com] I admire your attitude and how you choose to find joy in your relationship with your son and his wife, in spite of your health challenges. Know you can come here to vent anytime you need support. We are here to listen. How are you feeling today? Thank you for sharing so openly with us. Wishing you a gentle day. ~Allyson (ChronicDryEye.net team)
What really gave me hope was seeing Dr. Periman in Seattle. She took the time to respond to me online, when I was really feeling hopeless after my first dry eye consult, and she told me about advanced treatments available and more coming down the pike. Hearing that from a specialist was just what I needed to hear. It was just what I needed and it got me motivated to start this uphill climb to get my eyes better. -Jonathan Heath, Patient Leader Thanks for sharing this, Jonathan. I've heard good things about Dr. Periman. Dr. Periman is great! She's also hosted a couple of videos speaking about upcoming dry eye treatments which may be of interest: https://chronicdryeye.net/video/new-treatments-periman Warmly, - Reggie, team member
