When I was first diagnosed with Uveitis on October 19, 1994, I experienced a sharp pain through the left side of my head which traveled to my right and then left eye. My left eye became red, painful, and watery with severe sensitivity to light. I thought it was a punishment for my past relationship with my sister – a grudge I had held for a number of years. Because of the guilt, I felt as a consequence I did not deserve the best care I could get.
On October 29, I woke up nauseated, dizzy with a headache and a marked change in my visual acuity – a bad reoccurrence. I was put on Pred Forte eye drops every hour, 7am – 10pm, and Dexamethasone ointment at night for 3 weeks. I was out of work two months. During that time I listened to a Christian Radio station, WIHS, which got me through many a night when the pain kept me awake. This was a stressful time but also the beginning of a spiritual renewal for me which has been growing ever since.
I work as a Certified Nursing Assistant. I also blamed the stress of my job and the feeling of being taken advantage of by my coworkers as the cause of what I had been told by my Ophthalmologist was a possible immune disorder. I had been laid off from my 3 previous jobs due to circumstances beyond my control and had already been through several stressful situations. So along with my fear of losing this job due to possible poor performance, disappointment in losing my last job, and finding my present environment less accepting of me, I let my resentment grow. I worked on a busy, demanding Rehab Unit and being overly conscientious I took on a very codependant attitude toward my work and my relationship with my coworkers, thus allowing them to take advantage of me.
I realized I had to change. I couldn’t manage what I did previously. For about 4 months following the resolution of this bad flare-up, I had continuous headaches and migraine auras. My underlying fear was a brain tumor. I was seen by a neurologist. A cat scan, MRI of the head, and
a visual test all were normal. Amitriptyline helped. I developed aches, pains, and chills for the next 2 years from what I thought was an immune disorder and lack of sleep. My eyes still throbbed. I was still adjusting to sunglasses and all the changes in the left eye and floaters in
the right eye. My focusing was askew and I had difficulty driving at night due to the glare and firework-like burst of rays around all lights because of the large fixed pupil in the left eye which had developed over the last 3 months.
I was forced to take care of myself and work on a more constructive and assertive relationship with my coworkers and a more loving and forgiving relationship with my sister. I felt I was in the school of life with all the traumatic experiences of the next year: being the only witness to a fatal head-on collision on my first day back to full-time work, Jan. 2, 1995, the reoccurrence of another sister’s cancer, and other medical crises, hospital visits, and major surgeries in the family. I did not expect a lot of support from the family because of all they were going through. My Mother was becoming legally blind from macular degeneration in both eyes. I took medical leave again to help care for my sister with CA until she died, October of 1995. My problem seemed minor compared with other crises in the family.
I was confused, afraid of the unknown, and my anxiety was high. I wished I could talk with someone who knew about Uveitis or had it in order for me to gain some perspective. I did go into a period of depression and was put on Prozac for awhile. In the meantime I had more flare-ups and could not get off the Pred Forte drops. This made me ponder two questions: 1. What is fueling the Uveitis? 2. Is there a milder eye drop that I could go on for long term therapy – the side effects of Pred Forte didn’t look very good.
The following year I took care of a woman in hospice and formed a friendship with her daughter who offered to look up Uveitis on the internet. That’s when we discovered the letter about the Uveitis Support Group at Mass Eye and Ear Infirmary and some articles about Uveitis.
Finding out about Mass Eye and Ear and Dr. Foster opened up a new avenue when he definitively diagnosed Chickenpox and Herpes Virus as the cause of the Uveitis and the iris atrophy (large fixed pupil). I was put on Zovirax to suppress the virus and given a milder eye drop. My two questions were answered along with others as well. I finally got the help I was looking for and am continually grateful. I had done some research on my own with little result. Then all this came to me from other sources, so I felt God’s guidance in it even though I only see it in hindsight.
I’ve had some difficulty getting my plan of treatment on the road with my Connecticut doctors, partly because of my own intimidation of physicians still and my lack of assertive communication with them. I’m working to resolve this.
I’m learning so much about life in general. The most difficult part is facing that I may have played a large role in acquiring Uveitis by my negative attitude toward circumstances in life which may have compromised my immune system and made me more susceptible.
My experience with Dr foster has been very positive and extremely helpful. The Support Group has provided me with information and more support than I expected, especially in gaining a more positive attitude in general. I hope I can continue to come in the future. Boston is a great city.
Click here to listen to
Uveitis and Steroid-Sparing Therapy
Presented by C. Stephen Foster, MD, FACS, FACR
Audio-Digest Ophthalmology Volume 56, Issue 15