See Me

TUESDAY, OCTOBER 5, 2010

See Me

This is me. I almost lost vision in my right eye. My corneal transplant was in the last stages of rejection and was being eaten up by my severe rosacea that plagues my face. I don't want to whine but only my husband knows how much I cried in pain for six weeks straight and now you do too. And yet it's not pain. I don't know pain. There are other people out there with suffering that I can't even come close to touching. I'm left with a shriveled left eye which hopefully will change appearance after I have my corneal transplant in six months. I usually hide my right eye since it's larger (due the to transplant) behind my bangs. I'm still self-conscious about it and I guess that will never change.

My biggest fright has always been losing my eyesight. When I was in a senior in high school, my vision had deteriorated to such a degree that I was loathe to tell my parents that I was failing my classes because I could no longer see the chalk board. By the time I graduated, I knew that there was something seriously wrong with my eyes. A year later, when I was eighteen, I told my mother that I could no longer go on with my secret. I think mom and dad had some idea that there might be something wrong because I could not see the smallest things on a table like a pen, or a paper clip. Things would just not be in my field of vision and I felt such a gripping fear of helplessness and I started to isolate myself from my family and would stay in my bedroom for hours on end. Well, cutting to the chase, I found that I had Keratoconus. Keratoconus is a severe eye disease that distorts the roundness of the cornea into a cone shape. There is no known cause for keratoconus and in rare cases has been known to afflict family members. My friend Kyra and her mother Lynn both have the disease. Lynn was not diagnosed until 1979 and at that time she says that hardly anything was known about keratoconus. Even when I was diagnosed in 1982, I had never heard of it and I was anxious to find any information pertaining to my new disease. I had a wonderful and very understanding opthalmologist, Dr. L, who has done extensive research on Keratoconus and has published many works on the subject.

Keratoconus starts thinning the center of the cornea and at times the fluid behind it will push itself out of the center and a cloud of haze will appear in the field of vision and eventually a white-ish blue-ish scar tissue will appear over the eye. These are called hydrops. They are not painful but cause discomfort because it makes you feel as if you have swimmers eye times ten. Drops are prescribed to draw out the fluid and eventually the hydrop will heal and vision is restored. I have had five episodes of hydrops beginning when I was nineteen and the last one occurring when I was about twenty-five. I've not had another episode since then..praise God.

Having a corneal transplant can restore vision but I did not have a transplant until 2007 by my very special Dr. M. Until I had the transplant, I had tiny blue contact lenses (not for vanity as they do not change your eye color but for locating the lens in case it fell out) and they gave me enough vision to be able to drive, read and work. I was supposed to have a transplant in 1990 but I chickened out. I was not ready but as I had regrets later, I knew in my heart that the medical world would be even more advance if I waited and as long as there was no danger to my eyes, I would wait. When you have keratoconus, the world looks as if a giant spoon has stirred the room you're in and you see double of everything and it's dropped..like seeing a person in front of you and right next to them is their double. Lenses correct that but transplants have a better effect and longer lasting results. My transplant would be free and clear if I did not have a severe case of rosacea which can have a disastrious effect on a patient's eyes. Recently, my rosacea has gone into my eyes and has caused much vascular damage and roughness which can cause the graft to start to reject. My dermatologist, my eye surgeon and my opthalmologist are working together to save my eye and it's been a very distressing time for me despite my heroic teams effort to give me a positive outlook and their assurance that they will succeed....I know they will. We will all succeed.

I've been out on leave from my job and of course, the old hibernating routine had returned much to my chagrin. I have to work. I do not like feeling handicapped and I despise being out of sync with my daily routine. I went back to work yesterday and since I have a dot of white haze and huge rainbow halos, driving was difficult when I was on a street with on-coming traffic. I prayed heavily that I would not cause an accident but I got to work safely yesterday and today. I had to leave early both times as my eye was waving a white flag of surrender. I am blessed to have such a supportive group of loving friends that have made me come out of my cocoon and have forbidden me to have dark thoughts...ustedes saben, mis amigas, que yo no puedo sin el apoyar, sin los rosarios...mis suplicas habian sido atendidas. Gracias por las oraciones. Las quiero mucho.

I hope to return to regular blogging soon because after many false starts, I'm praying no more curve balls are headed my way for a very loooooong while...I've missed blogging terribly and have missed my special blogging friends.

Mother, thank you for coming to take care of me. I love you so much. You drive over four hundred miles to visit us all by yourself and I thank God that He gave us a loving, caring and one of a kind mother.

Thank you JoJo....you are an angel for typing this for me. You are my happy sunshine and I adore you. You are my sister... truly.

Deanna