Our Story Until Now, a Recapitulation
I am starting this blog today, but my right eye has been giving me trouble off and on for some time. This blog will give me a chance to tell people what is going on, and perhaps save me from having to repeat the story from the beginning for everyone.
This blog will also give me a chance to keep a running record of what has been going on in my life, because the last year has made me think I am Job in drag.
To introduce myself, I am Valerie DeBenedette. I am a 51-year-old woman living in New York State. I am a medical writer and part-time bookseller. My writing has appeared in many places, most of which you have probably never seen, but which include magazines, newsletters, newspapers, websites, and one book (Caffeine, Enslow Publishers, 1996, buy yours today at BarnesandNoble.com). I have written about almost all areas of medicine, as well as food, people, current events, and travel. Most notably for this account, I have written extensively on ophthalmology. I also work as a bookseller, a job that is an enjoyable way of getting health benefits.
My hobbies include reading, knitting and cracking jokes. I was born and raised in New Jersey and currently live in New York State north of New York City near the Connecticut border. I live with two cats. I used to live with a man, Bernie Cullen, but after 20 years of a good relationship, he passed away in his sleep on February 27, 2005. You can find out something about him at his blog, http://www.charlesjccullen.blogspot.com/, which he started only a month before he died. Everyone says that they want to die in their sleep. No one ever wants to be the other person in the bed, which I must say was an interesting and educational experience. But I do not begrudge Bernie the chance to die so peacefully.
Back to my eye: In general, my health has always been good, outside of being hypothyroid, overweight, and prone to cracking too many jokes. But in late November or early December 2003, I noticed that my right eye seemed to be coming forward. I looked at it, decided that I was imaging it, and ignored it for a couple of weeks. When you stare at your face in the mirror for too long, anything starts to look weird and I chalked it up to my overactive imagination.
Then, it seemed to be getting worse. My eye didn't feel different, and my vision was fine, but I felt like the eye did not shut all the way, as if an eyelash was stuck between my eyelids and preventing a good seal. My upper eyelid started to look a bit swollen. I looked as if I was rather startled, but only on one side of my face, a marvelously cockeyed look but one that I did not want.
So, since part of my writing usually comes down to telling people to see their doctor, I finally went to see my general physician. He took about 15 seconds worth of a look at the eye, said it was very swollen, and immediately told me that I needed to be seen by an ophthalmologist. Almost all of my doctors are in the same building, which is nicely convenient, so I took myself upstairs to the ophthalmologists’ office.
I got an immediate appointment with Dr. Allan Farquhar, who practices with his father, Dr. Hal Farquhar, and with Dr. Steven Facchina. He said I needed a CT scan to see what was going on and then took a pressure reading on my eye. My intraocular eye pressure was 41, which is about twice what the normal reading is.
He started me on eye drops to lower the pressure and oral prednisone. The CT scan showed that some of the tissue behind my eye was swollen. The swelling could have been the eye muscles or the other tissues that surround those muscles, which includes tear glands and little pockets of fat.
Dr. Farquhar’s exam also shows that I have some double vision at the edges of my visual field. Something in back of my eye is interfering with how the muscles move. However, I have really good muscle control on my eyes. I can move them independently of each other (a trick that has freaked out every ophthalmologist I have shown it to), and the double vision is not really noticeable to me.
With this kind of inflammation, one possible diagnosis is Grave’s disease, which is a swelling behind the eyes associated with hyperthyroidism. (This is what Marty Feldman, the much missed comic actor had that made his eyes bug out.) But I am hypothyroid. But I was told to see an endocrinologist to check out my thyroid levels to see if that was a factor. The endocrinologist noted that there are rare cases of Graves’ associated with hypothyroidism, but that the thyroid is probably not causing my condition.
Dr. Farquhar also wanted me to see another ophthalmologist, Dr. David Della Rocca, who is in practice with his father, Dr. Robert Della Rocca. (I have told both pairs of doctors that I intend to find and consult with a mother/daughter set of ophthalmologists someday.)
Dr. Della Rocca says that we could do a biopsy, but that because treatment would be the same in any case—prednisone, we could skip it. A biopsy procedure would involve him going behind my eye and taking a bit of the tissue there for analysis. This idea is greatly unloved by me, so we skip the biopsy.
However, all tests were sort of inconclusive. The diagnosis that everyone decided on was idiopathic orbital inflammation (IOI). Idiopathic is Latin for “We don’t know what the @#$% is going on.” Orbital is the area around the eye and eye socket of the skull. So, I have a diagnosis that says nothing.
So, I spent Christmas 2003 on prednisone.
Ahhhh, prednisone!! The bane of my existence. Prednisone is an important and useful drug. For those of you who do not think the Physicians’ Desk Reference is light reading, it is a powerful anti-inflammatory drug that controls inflammation better than almost anything available. It also has a list of side effects longer than your arm, many of which have been making my life weird.
Side effects of prednisone are many and varied. It makes you hungry. I will eat anything that does not move out of my reach fast enough. It gives you indigestion like no one’s business. I sometimes feel like John Hurt must have about five minute before the alien burst out of him in the movie of the same name. This means that you also eat to keep the acid monster at bay.
Prednisone plays with your head. High doses of prednisone can cause depression, paranoia, hallucinations, or euphoria. Mood swings are my problem. You can walk up to me and say hello and even I do not know how I will react. It also makes me feel jittery.
Long time use of prednisone causes cataracts, osteoporosis, and a general weakening of the tissues. It also weakens your immune system making you more susceptible to infections.
You also cannot just stop taking prednisone. You have to slowly wean off the drug, which may take a week or two depending on your dose.
And just to add a little bit more misery, prednisone is God awful tasting. Just swallowing the pill leaves a disgusting bitter taste in your mouth.
I spent that Christmas sort of euphoric. I was just happy in general, which was fine by me.
The swelling went away (although my eye was still slightly forward of where it should be) and all was right with the world.
But about six months later, the swelling came back. Back to Dr. Farquhar and back on prednisone. Down comes swelling and I come off prednisone.
During this time, I also experience a bout of iritis, which is an autoimmune inflammation of the iris, the colored part of your eye. Unlike my other eye problem, this was painful. My eye was incredibly sensitive to light and I looked like I was using tomato sauce as an eyewash. This was treated with prednisone drops and I got to avoid the oral stuff.
Christmas 2004. December brings another case of eye swelling. With each recurrence, the double vision gets a little worse. I am developing a thickening of the conjunctiva of the eye that is noticeable, too.
By this time, the amount of prednisone needed to beat the swelling back is between 60 and 80 milligrams a day, which is a honking big dose of prednisone. Again, I become euphoric. At least I think I am euphoric. Actually, I am manic. I will laugh at anything that short of a compound fracture.
By now, even when the swelling is under control, I have some double vision at the edges of my vision. But sometimes in the morning, I have about a half hour of double vision that does away.
So, 2005 commences and the periods between the swelling are tending to be shorter and short. I bat back and forth between Dr. Della Rocca and Dr. Farquhar’s office for a bit. For a while, I just ignore the eye and stay out of the way of my doctors because I just put up with the eye. I have been under a lot of stress this year and for some of that time, the eye has been the least of my worries.
But one day in late fall, I wake up and I cannot uncross my eyes. My eye is quite swollen. I take myself to be seen by Dr. Facchina, who says that there is no infection and that since Dr. Della Rocca saw me last, why not have him look at it.
I schlep down to 14th Street to the New York Eye and Ear Infirmary in Manhattan and see Dr. Della Rocca. He points out that the eye is no longer responding to prednisone and that maybe a biopsy is a better idea now. We schedule the biopsy.
The only thing good about this day is that New York Eye and Ear is across 14th Street from the New York Knit Café, where I can buy yarn and have a cup of seriously good coffee. When the going gets tough, the tough buy yarn.
I shall break this off here, gentle reader, and allow you to get on with your life. I shall continue the saga of my eye, with photos and descriptions of the black eye from hell in my next installment.
This blog will also give me a chance to keep a running record of what has been going on in my life, because the last year has made me think I am Job in drag.
To introduce myself, I am Valerie DeBenedette. I am a 51-year-old woman living in New York State. I am a medical writer and part-time bookseller. My writing has appeared in many places, most of which you have probably never seen, but which include magazines, newsletters, newspapers, websites, and one book (Caffeine, Enslow Publishers, 1996, buy yours today at BarnesandNoble.com). I have written about almost all areas of medicine, as well as food, people, current events, and travel. Most notably for this account, I have written extensively on ophthalmology. I also work as a bookseller, a job that is an enjoyable way of getting health benefits.
My hobbies include reading, knitting and cracking jokes. I was born and raised in New Jersey and currently live in New York State north of New York City near the Connecticut border. I live with two cats. I used to live with a man, Bernie Cullen, but after 20 years of a good relationship, he passed away in his sleep on February 27, 2005. You can find out something about him at his blog, http://www.charlesjccullen.blogspot.com/, which he started only a month before he died. Everyone says that they want to die in their sleep. No one ever wants to be the other person in the bed, which I must say was an interesting and educational experience. But I do not begrudge Bernie the chance to die so peacefully.
Back to my eye: In general, my health has always been good, outside of being hypothyroid, overweight, and prone to cracking too many jokes. But in late November or early December 2003, I noticed that my right eye seemed to be coming forward. I looked at it, decided that I was imaging it, and ignored it for a couple of weeks. When you stare at your face in the mirror for too long, anything starts to look weird and I chalked it up to my overactive imagination.
Then, it seemed to be getting worse. My eye didn't feel different, and my vision was fine, but I felt like the eye did not shut all the way, as if an eyelash was stuck between my eyelids and preventing a good seal. My upper eyelid started to look a bit swollen. I looked as if I was rather startled, but only on one side of my face, a marvelously cockeyed look but one that I did not want.
So, since part of my writing usually comes down to telling people to see their doctor, I finally went to see my general physician. He took about 15 seconds worth of a look at the eye, said it was very swollen, and immediately told me that I needed to be seen by an ophthalmologist. Almost all of my doctors are in the same building, which is nicely convenient, so I took myself upstairs to the ophthalmologists’ office.
I got an immediate appointment with Dr. Allan Farquhar, who practices with his father, Dr. Hal Farquhar, and with Dr. Steven Facchina. He said I needed a CT scan to see what was going on and then took a pressure reading on my eye. My intraocular eye pressure was 41, which is about twice what the normal reading is.
He started me on eye drops to lower the pressure and oral prednisone. The CT scan showed that some of the tissue behind my eye was swollen. The swelling could have been the eye muscles or the other tissues that surround those muscles, which includes tear glands and little pockets of fat.
Dr. Farquhar’s exam also shows that I have some double vision at the edges of my visual field. Something in back of my eye is interfering with how the muscles move. However, I have really good muscle control on my eyes. I can move them independently of each other (a trick that has freaked out every ophthalmologist I have shown it to), and the double vision is not really noticeable to me.
With this kind of inflammation, one possible diagnosis is Grave’s disease, which is a swelling behind the eyes associated with hyperthyroidism. (This is what Marty Feldman, the much missed comic actor had that made his eyes bug out.) But I am hypothyroid. But I was told to see an endocrinologist to check out my thyroid levels to see if that was a factor. The endocrinologist noted that there are rare cases of Graves’ associated with hypothyroidism, but that the thyroid is probably not causing my condition.
Dr. Farquhar also wanted me to see another ophthalmologist, Dr. David Della Rocca, who is in practice with his father, Dr. Robert Della Rocca. (I have told both pairs of doctors that I intend to find and consult with a mother/daughter set of ophthalmologists someday.)
Dr. Della Rocca says that we could do a biopsy, but that because treatment would be the same in any case—prednisone, we could skip it. A biopsy procedure would involve him going behind my eye and taking a bit of the tissue there for analysis. This idea is greatly unloved by me, so we skip the biopsy.
However, all tests were sort of inconclusive. The diagnosis that everyone decided on was idiopathic orbital inflammation (IOI). Idiopathic is Latin for “We don’t know what the @#$% is going on.” Orbital is the area around the eye and eye socket of the skull. So, I have a diagnosis that says nothing.
So, I spent Christmas 2003 on prednisone.
Ahhhh, prednisone!! The bane of my existence. Prednisone is an important and useful drug. For those of you who do not think the Physicians’ Desk Reference is light reading, it is a powerful anti-inflammatory drug that controls inflammation better than almost anything available. It also has a list of side effects longer than your arm, many of which have been making my life weird.
Side effects of prednisone are many and varied. It makes you hungry. I will eat anything that does not move out of my reach fast enough. It gives you indigestion like no one’s business. I sometimes feel like John Hurt must have about five minute before the alien burst out of him in the movie of the same name. This means that you also eat to keep the acid monster at bay.
Prednisone plays with your head. High doses of prednisone can cause depression, paranoia, hallucinations, or euphoria. Mood swings are my problem. You can walk up to me and say hello and even I do not know how I will react. It also makes me feel jittery.
Long time use of prednisone causes cataracts, osteoporosis, and a general weakening of the tissues. It also weakens your immune system making you more susceptible to infections.
You also cannot just stop taking prednisone. You have to slowly wean off the drug, which may take a week or two depending on your dose.
And just to add a little bit more misery, prednisone is God awful tasting. Just swallowing the pill leaves a disgusting bitter taste in your mouth.
I spent that Christmas sort of euphoric. I was just happy in general, which was fine by me.
The swelling went away (although my eye was still slightly forward of where it should be) and all was right with the world.
But about six months later, the swelling came back. Back to Dr. Farquhar and back on prednisone. Down comes swelling and I come off prednisone.
During this time, I also experience a bout of iritis, which is an autoimmune inflammation of the iris, the colored part of your eye. Unlike my other eye problem, this was painful. My eye was incredibly sensitive to light and I looked like I was using tomato sauce as an eyewash. This was treated with prednisone drops and I got to avoid the oral stuff.
Christmas 2004. December brings another case of eye swelling. With each recurrence, the double vision gets a little worse. I am developing a thickening of the conjunctiva of the eye that is noticeable, too.
By this time, the amount of prednisone needed to beat the swelling back is between 60 and 80 milligrams a day, which is a honking big dose of prednisone. Again, I become euphoric. At least I think I am euphoric. Actually, I am manic. I will laugh at anything that short of a compound fracture.
By now, even when the swelling is under control, I have some double vision at the edges of my vision. But sometimes in the morning, I have about a half hour of double vision that does away.
So, 2005 commences and the periods between the swelling are tending to be shorter and short. I bat back and forth between Dr. Della Rocca and Dr. Farquhar’s office for a bit. For a while, I just ignore the eye and stay out of the way of my doctors because I just put up with the eye. I have been under a lot of stress this year and for some of that time, the eye has been the least of my worries.
But one day in late fall, I wake up and I cannot uncross my eyes. My eye is quite swollen. I take myself to be seen by Dr. Facchina, who says that there is no infection and that since Dr. Della Rocca saw me last, why not have him look at it.
I schlep down to 14th Street to the New York Eye and Ear Infirmary in Manhattan and see Dr. Della Rocca. He points out that the eye is no longer responding to prednisone and that maybe a biopsy is a better idea now. We schedule the biopsy.
The only thing good about this day is that New York Eye and Ear is across 14th Street from the New York Knit Café, where I can buy yarn and have a cup of seriously good coffee. When the going gets tough, the tough buy yarn.
I shall break this off here, gentle reader, and allow you to get on with your life. I shall continue the saga of my eye, with photos and descriptions of the black eye from hell in my next installment.
posted by Valerie DeBenedette at 8:44 PM
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