On this blog, I have had many posts where I am corresponding with Carol. A year ago, we started writing to each other after connecting through an online dry eye support group.
Carol was very discouraged when her dry eye condition began. She related to me because both of us suffered from our dry eye condition following cataract surgery.
I believe this will be my last post with Carol on the title. It is such a beautiful conclusion because Carol has made peace with her condition and is not suffering with it the way she was in the beginning. Is she cured? I don’t think so since she still follows a regimen to help her eyes.
But what is most important to me is that she is able to live without her eyes constantly interfering and depressing her. She is actually doing very well!
My correspondence with Carol began to slowly fade and I hadn’t heard from her for a while. Then I saw her post something to someone searching for hope on our support group site. It was so touching!
Just as I had reached out to help her, now she was reassuring another member that healing was possible.
I believe that searching for hope is an important part of healing. The more you look for something, the more likely you will find it.
Lili: Hello, everyone. I guess that if you are here it is because you deal with chronic pain from dry eye, but it would be very encouraging to have a success stories wall or something. For me, success would mean not feeling my eyes and being able to forget about them most of the time. I have MGD, so if you have a success story please feel free to share it here – or even if you have had some improvement over the time.
Carol: Compared to a year ago when I was always miserable, I’m 200% better. I used to be on support groups constantly and they really did help. Then I found a dry eye doc who really understood. She got me going on the right track – not perfect, but so much better. Find out what works for you. Know that it can get better. Best wishes!!
Lili: Carol, what is your regime?
Carol: It is a fraction of what I was doing a year ago when it seemed like I was doing something all day long for my eyes. I had Lipiflow a year ago July and that seems to have been a very good thing; I haven’t needed to do it again. I started Restasis and continue to use in both eyes in morning and only in right eye in evening. Hoping to eventually stop it as I did OTC drops, which I no longer use.
I use nighttime ointment only in right eye at bedtime if needed. Right eye is the one that gives me problems at times, but not nearly as bad as in the beginning. I do 7 minutes of warm moist compress in morning followed by lid massage. I think I could stop that, too. Entire routine doesn’t take more than 10 minutes or so. Life is almost as normal as it was before Dry Eye. Hope you find what works most for you. It is not the same treatment for everyone. Best wishes!!
Lili: Carol, that is music to my ears, this is what I’m talking about!!! Real people who get better! I’m so glad your life is back to normal. I could live with the “almost” normal.
Lori: Hey Carol, I have missed you but figured since you haven’t been around that you were doing better! I’m so glad to hear this. So you may be on of the .05 % that had benefit from Lipiflow! Fantastic! I’ve still held out trying since so many here have such negative reviews. Hope the rest of your summer goes great! So glad the quality of your life has improved. People need to hear that here!
Carol: Lori, you are right!! We do need to hear of hope. I wasn’t sure about Lipiflow either but my doctor is convinced that it helped me. You really don’t know until you try. I was in such misery last year and I was willing to do almost anything. My tear break up time is nearly normal and my eyelashes even grew back. Someone told me a long ago that people who improve don’t come to support groups. But glad this thread started so people know there is hope. At the time, improvement seemed impossible. Hope you are better!!!
Judy: Lili, I can vouch for how much Carol suffered. I remember when she first joined this group. We both connected because our problems began after cataract surgery. Carol, nothing makes me happier than to know you are in a better place with your eyes. Yay! Lili, I am also doing better. It can be such a struggle, but it’s important to stay hopeful and keep trying things. 🙂
Lori: I was trying to explain that to a few of the members here. Most people who have had success with dry eye treatments aren’t in these support groups. There are many people who have had success – it’s just that we are the worst of the worst – most conventional treatments have failed us here. I hate that that makes others feel so hopeless when they read all the negative reviews of these procedures here. So happy for you!
Lili: You are right! I get worse when I read that there are people struggling for decades, because I thought that most people suffer one or two years and then improve. It is so good to hear that are both doing well! Quality of life, that’s all I want 🙂
Judy: I always hope that by sharing I can help others. Lili, I found this so inspiring that I’ve shared your post on my dry eye blog.
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hi! is this group still active? i’m seeing dates on the posts around 2017. if not active, can you please recommend another group? i have MGD and would love to be supported and if possible help someone else……….
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Hi Leslie, thank you for writing. Yes, the group is still active. I post there occasionally and am grateful that I’m managing my dry eyes well. The group is on Facebook and named: Dry Eye, Blepharitis, MGD, Corneal Neuralgia. The support from that group is exceptional and I wish you great success with it! Thank you so much again for your comment. Judy
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