I discovered reading again!

pile of booksI’m back after an extended time away due to health problems. After finally getting needed treatment, I’m thankful to be feeling better! I’ll write about that another time, but now I want to share something that helped get me through the long waits in doctor’s offices and the days at home when I was not able to get out of the house.

I purchased a Kindle Wireless Reading Device, Free 3G, 6″ Display, White, 3G Works Globally – Latest Generation last fall. With my Kindle, I can enlarge the print, or turn on the text-to-print feature. The reader is non-glare, and easy on the eyes, and I discovered reading again!

I was excited when I read through an entire book, a feat I’d not accomplished in many years! I read Son of Hamas in intervals while riding the Trinity Railway Express from Ft. Worth to my doctor’s office in Dallas, sitting in waiting rooms, or resting in my favorite chair at home.

Long waits don’t bother me now. My 6″ diagonal wireless Kindle fits nicely into a leather cover, and it is easy to take along. Now I can carry a whole library of books with me. When I purchased my Kindle, there was no way to organize the books. The latest free update added the ability to create categories and add books to them, making the library even more useful and easy to use.

I’ve been eying the larger Kindle DX Wireless Reading Device, Free 3G, 9.7″ Display, Graphite, 3G Works Globally – Latest Generation for a long time, though! Seems it would be even easier to focus with it, and it syncs easily with the smaller Kindle. I could grab the small one when heading out the door, and enjoy the ease of reading the larger version at home. Kindle has just lowered the price on the newest Kindle DX, which is scheduled to be released on July 7 and is available for pre-order now. I’ve just added it to my wish list.

I’ll share the rest of my health story as soon as I can, but I wanted share this first, because it may be that a Kindle Reader can give you freedom to read again also.

— Lois

Photo credit: University Library courtesy gt @ gtamin

My strabismus: Two lazy eyes like 2 unruly two-year-olds!

Two childrenThose of us who have strabismus do not like to be referred to as having a lazy eye. We are not lazy. Because our eyes don’t work right, we often have to work much harder to accomplish a task than those who have normal vision.

But if any form of strabismus could be referred to as a lazy eye, it would not be the permanently turned eye that people most often associate with the phrase “lazy eye.” It is so hurtful to many of these people to be labeled with that term. Many have said in the support groups that when people call their eye lazy they feel people are really implying that the person is lazy. Please do not do it!

I have intermittent alternating exotropia, which means one eye or the other will turn out at times. (Since my surgeries, my eye turns are not as noticeable.) Our eyes are not lazy either, but in the safety of our support group, where we all understand, I used the term “lazy eyes” recently to describe the battle we face. Here is the description I shared:

My strabismus is more like two lazy eyes that neither one wants to carry the load, but both want to be the boss because they can’t get along with each other. My eyes are like two unruly two year olds, and my brain is like the mother that is always telling her children to stop fighting and play nice together and share. I suppose the therapy is like discipline…argh. My brain has to insist that my eyes do it, but my brain doesn’t like it much either. Like the parent who says, this discipline hurts me more than you, maybe?

This is the challenge we face every day. Hopefully my sharing it here will help you see just a little of that battle also, and to reach out to someone with strabismus. Those with permanently turned eyes usually have very little control over the turned eye. And those of us with intermittent or alternating eye turns work very hard just in order to keep our eyes focused long enough to see.

I see posts in our strabismus groups or our comments areas almost daily from people who have been wounded because of social isolation, or taunts and teasing about their “lazy eye.” People with strabismus have difficulty making eye contact. Not only are they embarrassed about their turned eye, but when they look at you it often appears that they are looking away from you.

You can make a difference for these people! One of the best ways to show that you care about a person with an eye that turns is simply to look them in the eye as you talk with them. It may appear that they are looking over your shoulder or at something else in the room. But they are not. You are the one looking around the room, because you don’t understand how their eyes work. They are looking at you!

Photo credit: martina perhat

Sleep apnea and strabismus

sleeping eyeSleep apnea makes it much harder to control strabismus. If you feel tired most of the time, if you awaken frequently during the night, or if you don’t wake up refreshed, consider the possibility of sleep apnea.

I began to notice a mild sleep apnea at least 3 years ago. I would wake up unable to get my breath when sleeping on my back. That was easily solved by sleeping on my sides. But about a year ago, I began to notice that I sometimes woke up on my sides also. This year (since January) it began getting a lot worse, and in May I had a sleep study which showed a fairly severe sleep apnea.

If you think you may have sleep apnea, start keeping a journal of what time you go to bed and what time you go to sleep. Look at the clock each time you awaken, and try to remember the times. Try to keep up with approximately what time you drift back to sleep, how well you rest through the night, and how many hours of total sleep you got. Record this information the next morning. Do this for two weeks. I was amazed when I had to do this before my sleep study. I knew I woke up a time or two each night. But when I started monitoring it, I realized that I woke up lot more, stayed awake longer, slept fewer total hours, and slept more restlessly than I would have ever known without the journal.

Of course there are things other than sleep apnea that can interfere with sleep. But if you are not able to sleep well, you need to see a physician to help you determine why. Since I’ve been on CPAP, I sleep through most nights, awakening an average of maybe 2 to 3 times a week.

Some people have trouble tolerating the CPAP for one reason or another. My sleep apnea is related to a car accident which crushed my jaw when I was 18, and my jaw has gradually receded backward toward my throat, compromising my trachea (windpipe). The CPAP mask tends to push my jaw back even more, and while I breath fine now at night when on CPAP, I am noticing more shortness of breath during the daytime. My doctor is making an oral splint for me to wear at night to stabilize my jaw, and we are hoping this will help the daytime shortness of breath as well.

If you have sleep apnea, do your best to find a way to comply with whatever therapy is offered. It will make a big difference in helping you function better with strabismus. Sometimes surgery is the recommended method to treat sleep apnea. In fact that is recommended for me — bilateral mandibular joint replacements. But I recently lost my job related to these health issues, and along with my job went my health insurance. The mandibular surgery is a very expensive surgery, so I can’t do it now. However, now that I’ve seen how much better things are with CPAP, I will do everything within my reach to be able to stay on CPAP at night and breathe during the day as well!

Photo Credit: Carolina Foloni

Seeing beyond strabismus

Open window with curtainWhen I updated my post-surgery status on April 12, things weren’t looking very good, literally. My January 12 strabismus surgery had originally taken me from a torsion to near perfect vision. But my vision had deteriorated over the next few weeks, leaving me with a hypertropia, and my eye/brain connection couldn’t keep up. It was very difficult for me to do anything that required me to focus at close-up. My vision was worse than it had ever been.

But that was before the latest set of events. I could not keep up at work because of my deteriorating ability to focus, and my boss started seeking a replacement for me in mid-April. They allowed me to stay on until my replacement could be found and trained. My last day at my job was June 15. As things slowed down at work for me, my eyes were not as strained. I also got some new prism glasses that made a huge difference. Lastly, I had a sleep study done and am on CPAP for my sleep apnea now, and that has helped my eyes also.

I’m doing much better as long as I don’t overuse my eyes. I still have to stop and let them rest often. I have also developed some shortness of breath with activity related to an old injury (that’s also causing my sleep apnea), so it works out pretty good. I work on the computer until my eyes get tired, then I work on projects around the house until I get short of breath. By then my eyes are rested enough to go back to the computer for awhile!

I’m looking at work possibilities, and what I may be able to do to provide income. I’m planning to do some things from home to earn income for now. I’m also doing vision therapy from home now. Meanwhile I’m very thankful for the improvements in my vision and my relief from sleep apnea!

Photo credit: Dolamore

Strabismus surgery in older adults: for better or for worse?

Surgical instrumentsAs I aged, my strabismus took its toll. The time I was able to focus to read or do close-up work became shorter and shorter. My major goal for surgery was to at least partly restore my ability to read for an extended amount of time. My surgeon felt we sould be able to accomplish this. Unfortunately that didn’t happen for me. Instead, after my first strabismus surgery in May of 2005, I had a torsion in one eye.

My second strabismus surgery, to correct the torsion, was done on January 4, 2007. Right after the surgery, things seemed much better. But by mid-March, my vision started rapidly falling apart again. I have the torsion still, as well as the exotropia. In addition, I now have a significant hypertropia (vertical double vision), and my exotropia has changed to a V pattern, which means I see better when I bend my head downward.

I’ve not been able to get back in to see my surgeon since the day after the surgery, as his schedule has not permitted it. I have my first post-op visit end of this month (April). My local Developmental Optometrist has been working with me with some vision therapy exercises I can do at home. But the vision therapy is much harder now than it was before my surgery.

My surgeon is highly recommended. He writes regularly for Ophthalmology journals, and is very knowledgeable in his field. I’ve heard many good stories about him. He did his best for me, but it just hasn’t worked.

On 11/18/05, About.com shared details of a study published in the Journal of American Association for Pediatric Ophthalmology and Strabismus (AAPOS). The study focused on the success of Strabismus surgery in older adults, and noted that adults as old as 90 can be helped with this surgery.

But the only way to approach Strabismus surgery is to take it for better or for worse. If it is better, as it seems to be for many, that will be wonderful. But if it is worse, be prepared to accept the challenge and continue onward. Life is a lot more than what I see. It is who I am and who God is teaching me to be. Life is exciting, it is bigger than strabismus, and great to be part of it, so lets roll!

Update 6-23-07 — My strabismus much better now. I just posted a report to the blog: Seeing beyond strabismus

Photo credit: Phil Beard