I share my correspondence with my friend, Carol, from my on-line Dry Eye Support Group. Her words are in blue.
Judy, you have had such a rough time lately with your eyes. It causes everything to seem worse. It’s only a little over a week until you go to a new eye doctor. I so hope that will give you a new direction. Seems like we are always trying something!!! (Or at least buying something to try.)
My eyes were not good Saturday, but fortunately I was able to keep them closed at my granddaughter’s concert. Anyway, I have no clue why, but my eyes were fairly good yesterday and life seemed almost normal. Who knows what today will bring. That is one of the worst things about this disease; it keeps me on edge. But I am grateful to have good day; they are so rare.
Judy, I wonder how good Paleo is for you. Your emails actually sound worse since you have been on it. Perhaps you could adjust it some more?? I asked a dietitian friend about coffee and she said a cup a day shouldn’t hurt. I have read so many benefits of coffee, too. But don’t do it if you really think it hurts you. Just sounds like you might need it.
I did decide to cut Diet Coke to my morning one that has caffeine in it. Switched from caffeine free diet to water rest if the day as I am concerned it may be bladder irritant that might be causing night-time issue. Have done that for a few days. Will see. Take care, Carol
Hi Carol, well, it’s good you’re trying new things – maybe something will help. Wouldn’t that be great? As far as a remedy setting me back, I’ve just learned to go slow in case something is irritating. I’m finding the coconut oil isn’t causing a problem, but it’s not curing my eye issues either, unfortunately.
I do notice that my mood seems to make the difference with overcoming the pain. Today I had a rough day – I was outdoors a lot running errands and it was windy and chilly. I closed my eyes as much as possible, but they are burning a lot right now. I pray tomorrow my eyes will be better.
I’m feeling less and less certain about Paleo – although I’ve been pretty good about following it. Today, I succumbed to an oatmeal raisin cookie while running those errands. It was so good – but I still haven’t had dairy, coffee or sweeteners.
Well, I better go put on my hot compress and go to bed. Wishing you a great eye day! Wish it could last and maybe one day it will.
Judy, the burning sounds bad. I keep having the “if only” thoughts like “if only fogginess would lift” or “if only foreign body sensation would stop” or the biggie “if only I hadn’t had the surgeries.” I know those are not productive thoughts, either.
Mood has a lot to do with it, but it’s easier said than done. Glad you are less weepy. I know I am having a better day if I don’t feel like bursting into tears all the time. I was never like this and miss being “normal” so much. I used to just go about life without thinking about my eyes.
My daughter emailed me photo of beach house they are renting for spring break and invited me along. I went with them a couple of years before my eye problem; such a fun time. Now it doesn’t seem possible to do anything like that. I can imagine feeling miserable and just wanting to be home. It would make everyone else miserable, so it’s better for me not to go.
Maybe you can adapt Paleo to suit your needs?? You have really stuck with it for the most part. I think cutting back on Diet Coke has helped me. But life is too short to give up everything. And heaven knows eye issues have taken so much already.
Good morning, Carol. Yesterday was a gorgeous day. My eyes were foggy overall, and I was grateful that I had a few better moments where they didn’t hurt.
I had lunch with a friend and she told me that she could see that my eyes looked painful. I rested in the afternoon, but my eyes were still foggy. Today they are, too.
I feel sad for you with the decision about not going with your daughter and her family to the beach house. I wonder if you would be miserable? It seems like you’ve come so far with your eyes from where you started. It is much better than it was. If you follow your regimen there (a pain in the a…) I imagine it would still hold wonderful times for you. The thought of missing it feels sadder to me. I don’t think you would make anyone else miserable – they would be so grateful having you there. And who knows – maybe your eyes would feel great at the beach because of the moisture. Just giving you something to think about. Have a good eye day!
Judy, it is sad to miss beach with daughter and family but I would rather have the good memories of having gone in the past. Hope you have a better day.
Oh, Carol, I am trying hard again to stay positive – I had such a bad day yesterday.
I was really looking forward to seeing two good friends of mine for dinner. But my eyes were very foggy and sore. I put a little coconut oil on the lids before going out in hopes that it would soothe me. Unfortunately, it blurred my vision and I had trouble finding the restaurant where I was supposed to meet my friends.
I was frustrated, but found some parking and had to walk a few blocks. It was so stressful. Even though I was upset, I was still managing as best I could despite my eye pain.
I finally saw the restaurant but had to climb a flight of stairs. I guess with the fogginess I didn’t pay attention and my shoe caught on the first step. I fell forward and landed on the steps, but not too hard. My knees were scraped and chin throbbed. Several of my fingers were twisted but not broken. I sat there and cried for a few minutes – no one saw me in the darkness. Finally, I picked myself up and met my friends. Most of the dinner I was teary and my friends were very worried about me.
My eyes take all of my energy to cope and it leaves little left for coping with everything else. I’ve dealt with much harder things than my current situation. But my eye problem just overwhelms me and I’ve never been in a situation where I’m physically so down that I cannot mentally overcome it.
Today, I’m very sore but thankful I can bend my fingers enough to still type. I was so lucky I didn’t break anything.
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2 thoughts on “#28 Judy and Carol”
I saw some of the comments on FB website.The pic of all the eyedrops was priceless.Just like my cabinet! I am following because I feel like my eyes control my life and so many Dr’s have made things worse.One had me on steroids for months.Being new to all the eye drops and not being able to spend too much time reading I had no clue until boom! Cataracts and acute glaucoma.Needless to say I now have a very careful and methodical cornea specialist. I think my biggest problem is light sensitivity.Can’t drive at night and have to request dark corners in restaurants.Have a yellow tint on my eye glasses and mainly listen to tv and if I watch I wear sunglasses.I use the serum drops which seem to help,plus allergy drops and Celluvisc artificial tears.My husband said to quit all the procedures,plugs, cauterisations etc and I have.My glands produce no oil. I have to take trips to UK 8-9 hours.I just cover my eyes for the whole journey.I feel like I will go blind.One guy said I needed cornea transplants but the dr I have now said “what is he thinking? 4 hrs of testing with the twit and 4 hours every time I had appt.My corneas are fine.I an becoming my own advocate.As a former nurse disabled by Sjogrens etc I’m not doing anything to my eyes.It just irritates them. I think we know our bodies better than anyone.Most days if i’m indoors my eyes feel normal so long as no bright lights etc.They don’t even feel dry.A/C in the car is a killer but living in Florida I have no choice other than go to apprs,run errands as early in the day as possible.I do use humidifier indoors when heat/A/C is running.Sorry for writing a book.Got a little carried away.Love your humor.I’m a British transplant so the wit is appreciated. Love the Blog. It sums up what many of us let Dr’s do to us because our eyes hurt so much.I am very picky about any of my docs these days.😎
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Caroline, thank you for taking the time to write me such a detailed comment – I appreciate it very much. I am so sorry you have struggled with your eyes. It sure does help to have support because most people cannot know how hard it really is. Knowing you are a former nurse and also have Sjogrens – it makes it more amazing to me to know that you also are doing nothing for your eyes for the same reason I discovered. The constant irritation is like a puzzle for me to solve. I am still struggling to figure it out.
I’m glad you are picky about your doctor. I have tried so many and my current one has no ideas but is ammenable to my suggestions.
I don’t know where this blog and eye journey is going, but glad to share it with you. I don’t post that often but I like knowing I can pour out the struggles to people who understand. For awhile I felt like I was only complaining on my main blog, My Journeys Insight. I’m an avid songwriter and an artist. I really need my eyes for everything (as do everyone else). So I pray it will keep getting better.
If you like music, check out my other blog (www.myjourneysinsight.com) because I’d love to also share my journey there with you!
All the best, Caroline, and have a nice Sunday. 🙂