I need some new eyeballs!
#337479 - 10/28/08 09:49 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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I have had a raging case of uveitis for over 3 months now!! Uveitis is an inflammation of one of the layers of my eye caused from my sarcoidosis. I use steroid eye drops 4-6 times a day, they burn and leave a horrid taste in the back of my throat.
On top of that, the inflammation has caused many of the small glands around my eyelashes and under my eye lids to become clogged. It feels like I have large chunks of glass in my eyes.
They are swollen, red and painful. I haven't been able to wear eye make-up in forever. I actually work for for an optometrist which isn't so good-imagine walking into the place you get your glasses and contacts from and the girl helping you has really red, nasty eyes???? Its not at all contagious but it still gives people pause.
There is some question as to if the clumps they see in my eyes are "just" the inflamed glands or if they are seeing granuloma formation from the sarc-which would be even worse.
I am used to pain, although the remicade is helping a lot but enough with the eye crap. I have had bouts of uveitis on and off for 4 years but this is the worse its ever been. 
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Taking it one day at a time.....
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Michelle -
You get the "bravery award"! I consider myself to be very spiritual, (in the sense I'm a devout Chrisitan and believe God's Word and healing are for today) but I don't think, even with my faith, I'm as "up" and optimistic as you! You are amazing! 
I pray for a miracle - that everything attacking your body will be healed! 
Blessings! Dorothy
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"I Will Survive! :-)... I shall live and not die and declare the works of The Lord..."
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Thanks Dorothy! I certainly don't always feel brave!! I try to keep my spirits up and try to keep a smile on my face despite my illness. But every now and again I need a good rant! I just find it hard to believe that i WORK for an eye doctor and still can't get the answers or find the treatment that works!! 
Uveitis is a problem for people with sarcoidosis in about 25% of the cases. It was actually one of the first tangible symptoms that I went to a doctor for. It took them several more years to figure out the root cause but even now they can't seem to control it.
I would have thought the remicade would help as it is prescribed in severe cases of uveitis with no known cause. I have had 10 infusions to date and this is the longest bout I have had. I really have considered gouging my eyeballs out with spoons today!  I wonder how far you could fling an eyeball off a spoon??
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Taking it one day at a time.....
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Quote:
I wonder how far you could fling an eyeball off a spoon??
Hmmm... probably a good 20 feet anyways!! I hope you still have your eyes to read this post!! I was a the dr. myself today as my allergies are all in my eyes and needed some prescription drops instead of OTC. I hear you, my itchy watery eyes are nothing compared to what you must feel!!
Hope this flare goes away sooner than later.
HUGS!!
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up! 
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Oh Michele, I feel so bad hearing this from you, since just recently you sounded like you were doing so much better. I admire your sense of humor in the midst of dealing with all of this crap.....I will include you in my prayers tonight that they come up with an answer to what the heck is going on and be able to do something about it. You need to get back to decorating!!!!
Best wishes, Sharon
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Oh my gosh, Michele. What exactly is sarcoidosis? Is that what the model Duff has? I read her book, "Model Patient", and I loved her attitude. You must deal with so much, and here I complain about occasional D. It really makes me put things into perspective. Things could be alot worse.
Be well! Lynn 
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Quote:
On top of that, the inflammation has caused many of the small glands around my eyelashes and under my eye lids to become clogged. It feels like I have large chunks of glass in my eyes.
Assuming your problem is really clogged glands, I'm passing along a recommendation. Maybe your doctor has already talked to you about this but I had a clogged gland along my lash line (drove me crazy) and my eye doctor suggested doing the following:
Make a very, very weak solution of baby shampoo and water. Like 2 drops of baby shampoo to a capful of water.
Take a Q-tip, dip it in the solution, then work along the lash lines, massaging in little circles.
She says this helps loosen up whatever gunk is clogging the glands. Obviously you should check with your doctor to make sure this isn't going to make whatever you have worse but it might be worth a try.
I'm so sorry you're suffering with this so terribly. Having sore eyes is maddening and having ones that look bad is terrible for morale.
Hang in there and take care.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Bless your heart! I hope you feel better soon. Take care. xxxx
emmasmom
(ibs-c) gas
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Sand, I have a bottle of the baby shampoo/water mixture prepared and use it twice a day-have for months now. I even use it on my dogs faces!! I get some free samples of the lid scrubs you can buy in the stores and use those as well sometimes but the baby shampoo thing works just as good and its cheap!
Sarcoidosis is a disease in which the immune system over reacts to an unknown antigen and causes granuloma's (little clumps of cells) to grow. The majority of people who get it don't have any symptoms and need no treatment. It usually shows up in the lungs first and can cause shortness of breath for some people. I am in the more rare 20% of the people where the disease progresses to a state called progressive chronic. Which means it continues to get worse and just doesn't go away.
I do not know anything about Duff but Bernie Mac just died of it. In my case, it causes really bad arthritis, in fact they thought I had RA (rheumatoid arthritis) for several years. It causes inflammation all over my body so my hands, feet, ankles, knees, etc all swell up and hurt. It causes extreme fatigue and memory problems. It has caused scarring in my lungs and reduced my lung capacity. It affects my heart and I have to take heart medication. It can basically go anywhere and cause untold amounts of damage in the more severe cases like I have. I get remicade infusions at the hospital once a month and it is helping. I feel a whole lot better than I did a year ago even.
I'm trying to wean down on the steroid eye drops and will see the eye specialist again 11/20 to go over my options. But, its really a matter of get the sarcoidosis under control and my eyes will follow but thats proving to be an extremely difficult thing to do!
Its getting real cold here in MI but its supposed to be in the mid 50's this weekend so we hope to wrap up the fall yard clean-up and get the porch furniture and stuff put away. Than I still need to clean my closet, I job I LOATHE but since its a really small closet, needs to be done frequently. I have to dig out the winter clothes. Than we will probably take a weekend to do NOTHING at all before starting the last few rooms in the house. We decided on a nice yellow for the hall and bath and still have the front bedroom to do. I am anxious for it to be done but running out of steam very quickly! 
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Taking it one day at a time.....
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