This was originally posted on May 8th, 2014:
Sometimes, it’s amazing for me to imagine that four years have passed since my rebirth at the age of 50.
Many changes have occurred in my life since then. With the finality of my divorce, I have settled into a routine of keeping close tabs on my three children as I continue to follow my dream. The deaths of my parents within two years, as well as the memories associated with living in my childhood home have me living in the past at times. But I also see my future very clearly.
I am not in any hurry to get there. There are so many wonderful blessings going on in my life that I want to focus on.
The present has been more challenging than I want to admit because I unfortunately live with chronic pain in my eyes. I deeply want to find acceptance of my condition but pain is hard to live with. I’ve continued to search for remedies without finding any relief.
In some ways, I see my suffering as a form of grief. It has come with all of the stages that I am quite familiar with. When I first experienced PVD (posterior vitreous detachment) after my cataract surgeries – I was in shock. Since that time, I’ve alternated between depression and numbness. At that time, I was not living with pain – only foggy vision.
But that has changed. Recently, I’ve noticed that I’m angry and irritable because of the unrelenting pain.
Just like grief, I decided to see if I could find others that might have wisdom to help me. I discovered an online support group for people suffering with (get ready for a complicated name): Chronic Dry Eyes & Chronic Blepharitis.
I have both of those conditions and Blepharitis refers to inflammation of the eyelids. This group has helped me tremendously. For certain, it sure helped to commiserate with others suffering from eye pain. And it was fascinating that so many of them had gone through the same experiences with doctors as I had. Most of them went into great detail about the remedies they had tried.
I am going to share information that I’ve learned by summarizing many messages. All of them tell a very sad story. I’ve organized them into one conversation, but these comments happened over time and came from many different people. Anything I’ve written will be in black/bold.
I just joined this group. I’m not sure where to start sharing. I can say that I know this is a place where I’ll find understanding. I have had my condition for over two years. I’m 54. Three years ago, I had some problems seeing and was diagnosed with mild/moderate cataracts. I had surgery for them and have suffered from many complications. This dry condition is horrible and those surgeries made my problem worse.
My eye condition is really affecting my quality of life. I’ve been miserable living with constant pain. I have been using steroid suave, taking flax and fish oil, tried plugs in my ducts; use hot compresses and Restasis eye drops.
Recently, I went on hormone replacement therapy to see if that could make a difference. It has been a month and nothing has changed yet. I’ll let you know if it helps! I miss feeling “normal.” Every day I struggle with fogginess and pain.
I’m on hormones too! The only time my eyes feel “good” is when I’m asleep or have hot compresses on them.
I’m thinking there is no such thing as just chronic dry eyes. I think we should tell our docs not to say, “You have chronic dry eyes and I’m giving you Restasis. Just go die for a year.” I’m glad I had the brains to go to a neuro optho on my own after 6 months.
My eyes drive me nuts. I take fish oil, use Restasis, use over the counter drops like they are air, sleep with a wet rag over my face, and have plugs in the ducts – and still it is like this.
My eyes have been bad again this week leaving me very depressed and unable to work. I think I’m close to losing my job. The worst thing is I don’t feel I’m getting the help I need. My doctor doesn’t know what to do for me.
My eyes hurt all the time, my left eye is dribbling and goopy, and my vision really sucks. This stinks. OK, rant over, back to work. I just had to say it to somebody.
Have you tried using ice cubes to stop the burning? There are those eye masks you can put in fridge or freezer. You can use cold or frozen cucumbers too.
My eyes will not stop. I sit here with wet cloth on my eyes and also just pouring the drops in. Both eyes still killing me. Going to blow a gasket here.
My eyes have decided to join yours now. SO miserable!! Makes me feel sick, headaches, light is painful. The pain is like a combination of scraping sand and onion juice.
I’m so sorry. I understand it can be horrible pain & discomfort is so hard. Can you use preservative-free lubricating drops that do not have Benzalkonium Chloride in them? That can aggravate some people’s eyes.
I didn’t know that and my doctor only recently told me. I was pouring in artificial tears that could have made my condition much worse!
I saw an eye doc and he just said dry eyes and gave me Restasis and I also got the tear duct plugs; neither work .
I’ve been there many times myself. It’s a process to figure out what helps you and what doesn’t. There are many forms of Blepharitis and you need to know what type you have.
My doc told me I was his worst patient, I have the plugs and I’m on the Restasis and I had to be on the Steroid drops for almost a year to just survive. But I’ve been eating really healthy trying to take the best care of myself.
What exactly have you been diagnosed with?
The doctor just said I had dry eyes; that was the diagnosis.
Telling you that you have dry eyes is like a cardiologist telling you that you have heart trouble! It might be accurate in some sense but it is NOT A DIAGNOSIS. Dry eye is a convenient catchall term for a whole lot of things (many of us have more than one issue).
My doctors are willing to offer me a Vitrectomy – which is totally risky! I just wish I didn’t have the discomfort and pain. I’ll keep trying things and will definitely share anything that works.
I am new to the group. Thanks for the invite. Have had dry eyes for years. Not so much for treatment. My doctor put me on Doxycycline for several months, but I did not do my homework, and really don’t know if there is any good research. My gut wouldn’t handle it and shortly after I developed a parasite infestation. Maybe the antibiotic changed the gut flora?
Your words are very meaningful for me and I am so sorry about what happened on the Doxycycline. I was given a prescription for it also. I decided to wait on it because I’ve had stomach issues in the past. I’m glad I followed my “gut” feeling! I started hormone replacement therapy instead. Thank you for sharing and I hope something brings both of us relief soon.
I have aged at least three years in the last 5 months. I now look older than I am and I always looked at least 5 years younger before.
I feel that way too. I look at pictures before this eye pain began. I was always smiling and youthful. I walk around now with my eyes like slits, trying to cope with constant pain. I pray it won’t be this way for the rest of my life!
I learned that eye pain is considered particularly excruciating because our eyes have so many nerve endings.
I was a terrific advocate for my children and parents. But it has been difficult for me to advocate for myself because I honestly feel like I am ill and in too much pain to think clearly.
Because my eyes have been worse lately and nothing has offered relief, I’ve decided to pursue a remedy that has intrigued me from the very beginning – serum eye drops.
I had heard about miraculous results and even one of the doctors at my HMO mentioned it. These eye drops are created from my own blood. Blood is drawn and placed into a centrifuge to create the serum. It is packaged at a pharmacy and placed in the freezer in packets. The process must be done every 3-4 months.
The serum is expensive and not covered by insurance. But the doctors who would treat me do take insurance. I’ve requested my HMO to refer me there and am waiting for their answer. If they refuse, I will switch my coverage because my divorce is final and I have that option now.
There are only a few places in the world where serum eye drops are available. The center that does this is only two hours from where I live. It is affiliated with a large university, so it isn’t like something completely out of the box.
I realize the Internet is full of misinformation, but I have been reading a lot to learn more about the condition I have. It seemed like serum drops promoted healing and relief.
But then, I received a real sign. I spoke to someone who actually used them! A good friend called me and asked me if I would like to talk to someone she knew who suffered with severe dry eyes and had found relief. I was more than ready.
The woman’s name was Celia and she was very kind on the phone. I had a paper and pencil handy and wrote out all of her suggestions. There was a long list. I wasn’t sure about whether I’d be willing to wear motorcycle goggles and even found that to be tragically humorous. But I didn’t rule it out.
Celia talked about the serum eye drops. She said, “Getting them is very inconvenient and they are expensive. But they make such a difference and I can’t live without them.”
As if that wasn’t enough for me, the very next day an acquaintance left a message. She and I had played tennis a few days before and I had a lot of trouble that day keeping my eyes open. I was amazed that I was able to force myself onto a tennis court the way I felt.
Her message said that she had some information that might help me with my eye condition. I called her back.
She said, “I saw my ophthalmologist and told him about you.” With breathless excitement she said, “Do you know about serum eye drops?”
I let her know I had been considering them and was amazed at the coincidence that now two people were eager to share this information with me. There were hurdles I’d have to go through in order to do this.
But I wanted to hold onto my hope that something was going to help me heal and feel better.
To be continued . . .
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