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DM and Cataracts

A week ago I had my cataract removed on my left eye. I’ll have the right eye done in two weeks.

Wow, is it ever amazing how well I can see. My left eye has been a lazy eye. I had it diagnosed at the age of 11. They tried all kinds of techniques to help me build up the strength of it, like taping over the lens of my glasses on my right eye, hopefully forcing me to use my left eye. I wasn’t co-operative. I just took my glasses off.

Until a couple of years ago, when I started wearing contacts, I have relied on my other eye, the right eye for everything, distance and reading. A few years ago, when I started wearing contacts they corrected my left eye so that I would use it for reading. I adapted well to that. So when they did the cataract surgery they corrected my left eye for reading. If you have a lazy eye, sometimes it won’t co-operate and start working. Impressively, my left eye is working well and I don’t have to wear glasses anymore.

After the surgery I was not supposed to drive myself home. I usually do most of the driving at our house. We planned on Kent driving me home and he agreed not to drive on the freeway. It was a new experience for me to let Kent take care of me. He really seemed happy to be there for me, he’s always seen himself as my hero. Also, I’m sure that he enjoyed the role reversal.

I have my right eye scheduled in a couple of weeks. My vision in my right eye is quite good so I don’t need glasses in the meantime. I’m excited to have both eyes done because it has made such a difference in my vision by having my left eye done.

There’s a little shadow on the outside of my left eye that I notice sometimes. The doctor told me that it is the edge of the cataract lens and that it refracts some of the light back into my field of vision. He told me to ignore it. If I pay attention to it, I will continue to notice it. If I ignore it my brain will forget that it is there and I won’t notice it.

I visited with my general practitioner, this week about my anxiety. She was as helpful as a therapist. She told me to imagine myself in the middle of a sphere with all of my life going on around me. I could imagine myself as a conductor that was conducting an orchestra (my life) all around me. I pictured myself crazily conducting like we have seen Mickey Mouse do in several films. Hannah told me to now visualize myself on the outside of the sphere and yet still in charge. From the outside of the sphere all that I have to do is a gentle tap on the sphere and it changes everything with very little effort on my part. By being on the outside of the sphere I can see the workings of my life but I have a little distance and I can make gentle nudges that make big shifts.

My general practitioner told me to do this while I am in a secure, quiet setting. She even told me to cross my arms with my palms at opposite sides just outside of my collar bone and to gently tap, first one palm, and then the other. That way I could get both sides of my body involved and also both sides of my brain. She also said to notice my anxiety and to feel it. Don’t try to push it away because then it just gets bigger. I have been using this lately. It is amazing that by sitting with the feelings, allowing myself to feel in ways that I have never allowed before, the anxiety is still there but it isn’t all consuming. Eventually it becomes like the light refracting on the outside of my cataract lens replacement and I don’t notice it anymore.

Cataracts in Myotonic Dystrophy (DM) are common. In fact, it is due to early cataracts that many people are diagnosed. DM cataracts are called “Christmas Tree” cataracts due to the way that they reflect the light. I’ve never seen it but the doctors tell me that it looks like tinsel on a tree. Before we were told this we assumed that they were red and green reflections, but we were wrong.

As we were raising our family we went to an optometrist, Dr. Grey, those who examine, diagnose, and treat people’s eyes. It wasn’t until the DM diagnosis that we started taking our family to an ophthalmologist, eye doctors who perform medical and surgical treatments for eye conditions.

After the DM diagnosis and after taking Kent to an ophthalmologist, we found out that he had significant cataracts. They scheduled him for surgery and replaced one of his cataracts. The other one wasn’t done for a few more years. We saw Dr. Grey sometime after the first cataract surgery and he told us that he had charted Kent’s cataracts over the time that Kent was going to him. It was frustrating because he never told Kent or I about the cataracts that he was observing. Kent was 43 years old. Cataracts can’t be common at that age. I lost a lot of respect for him because doctors should inform their patients about their conditions.

At the original DM diagnosis we were told to start taking our family to ophthalmologists. At the juvenile ophthalmology appointments they found scarring in Michael’s eyes. They said that it was because he had such dry eyes from not closing them well that the bottom had dried out and created scars. I never thought that my sons had dry eyes because their eyes were always tearing. I didn’t realize that they were making tears in an effort to minimize the dry eye. But their natural tears didn’t help enough. They had us start using eye lubricant ointment. It was pricey. Eventually we were able to find a generic form that was only a couple of dollars. We used that for many years. Michael was followed regularly to make sure that he didn’t get any additional scarring. We also had our other children watched closely but, thankfully, their eyes weren’t scarred like Michael’s.

All of our family see an ophthalmologist annually now, except Kent. Since both of Kent’s cataracts have been removed he doesn’t need to be followed as closely. All of our children have cataracts but they aren’t “ripe” enough to have them removed yet.

I can no longer find the generic eye ointment. I have since read the ingredients on the expensive eye lubricant. It is petroleum jelly and mineral oil. I figured out the percentage of both and I now mix my own eye ointment. I buy a new container of petroleum jelly and stir in a little mineral oil. I then take this container to our local compounding pharmacy and they pack it in tubes for me. It is so inexpensive, under $10 for about 10 sealed tubes. That is what we all use now to keep our eyes moist in the night. Michael and Chad also put tape on their eyes at night to help them stay shut. This has helped to prevent further scarring.

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