Posted by Jim on March 3, 2010 (2 weeks ago)
After a few chats over text / email and on the phone with people from this group, and after talking to friends outside of this group, I want to do something we don’t so on this often enough – give out some practical, useful and helpful advice for those of us with RD and low vision.
Here it is:
Sit still
Yep, during your next eye exam, sit still. Why Jim, I always sit still during my eye exam. No, you don’t. And I don’t. I get so hung up on getting off of the E and getting past 20/400 and down to 20/20 that we all move around. We put on the pin holes, and we move our eyes, we strain, we squint, and we move our butts, bodies and heads. Why do we do this?
Because the R at the end of the charts line might be a P. How do we know? We don’t. We see a very small circle and blurry images all around it. So we move around and tilt and strain and then we see a straight line going down and a line going at an angle from the upper left to the lower right.
And we say YES YES ITS AN R
And the technician tells us good job, tosses us a treat or a kind word, flips down to the next chart line and then the Doctor comes in and pumps us all full of kind words of phrase: “Well congratulations! You are healing very well. Looking you saw all the way to 20/70 today. That is a great improvmenet.”
Why do we do this? Human nature. We want to be better, we don’t want to be sick. We want those two beautiful eyes that our significant other looks into to be the mirrors into our souls, not bloodshot in one and eve worse in the other, ranging from beets to a Bloody Mary or a V-8….on a good day.
But this doesn’t help us when trying to drive a car and see signs. Is that I-9 or I-8 coming up on the left?
I’ve had my benefit hear of kind words, prayers, and my frustrations with them. And jumped up to help new people and been frustrated sitting here watching them come in and go with the worst of their condition being little bubbles turning into micro bubbles before they go back to their lives 20/40 in their bad eye. I don’t begrudge them, or hate someone for my condition. It’s an Act of God, a probability. I was the 1 in some huge number. Why not the 1 in the billions of other suckers who bought lottery tickets? Who knows. Its life. But I wanted to share something here that was more than a prayer or a kind word. Something useful for the community. So on your next eye exam, sit still. And get a real result. And then when they ask what has changed from the last time, tell them “I am reading the line, like I am supposed to. And you know what, I am not 20/40 in the real world, because the real world doesn’t let me put on pin holes, squirm around in my seat and tilt my head all over”
Jim
I sent this to an RD group I belong to and after 30 minutes of writing it and proof reading it, still made mistakes in it. But if you don’t know I make errors and typos by now, you haven’t been following me since that day I came home from work and asked Anna if she saw this thing in my eye.
Posted by Jim on August 14, 2008
I have been reading the Drizzt books, and somehow managed to skip Passage To Dawn. No one had it for sale. At yesterday at MSP when I walked in to buy peanut crackers, there on the bottom shelf where I first found these books in June was Passage To Dawn. From 4 PM yesterday till my plan landed in PHL 7 hours later I read 310 of the 375 pages of this book.
It is great to be back to my pre-RD level of reading. I think it is a combination of the weight loss, blood pressure, physical fitness, nutrition and the years since RD. After surgery I cancelled cores of magazines, stopped buying books, stopped online courses, and settled down to a crawling pace of reading on paper, and audio books. The pile of magazines and books in the bathroom and on my desk wenr from 2 feet high to nothing. I am not yet prepared to resubscribe to all the magazines in such numbers again. But it is good to be back to reading better.
I had started reading on the airplane last April, and was managing to do a few pages a day on the flight. And work related material, which is technical and requires good comprehension was a crawl. That is up in pace also.
Posted by Jim on February 6, 2008
In the mail I get this flyer, 8 1/2 x 11 card stock folded into a 4 sheet flyer. It is from Mary Betty Roeder 94 Brick Road #303 Marlton, NJ 08053. I do not know Mary, or how she got my name. The material has been sent with Free MATTER for the BLIND or HANDICAPPED as the postage stamp. Now I am neither, so I don’t know how we are getting this. On the card, PRINTED, is my name and address.
Now I called 866-462-2852 the toll free number for mvrf.org on the flyer. At that time, the number was answered by a business who transferred me to voice mail. When they called me back a few days later, the lady on the phone informed me that they have no personal information of my own. The addresses were printed by my physicians office and they sent the mailing out on their behalf. So my next call was to Jay Federman, MD. Practice Name:, Ophthalmic Partners of PA. In this case, I called the Voorhees, NJ office to ask them why they are sending me these flyers. I spoke to the office staff who informed me that they had no idea about the mailing, and it may have been done by another of their offices. The doctors do float between offices, and it is a very large and busy practice. I figured I would speak to Dr. Federman at my next appointment.
Well the next appointment came, I was at the office, and it was booked too soon. So we rescheduled the appointment and I walked out. The flyer goes in my binder, not to be touched again till after the holidays. Today, I am finishing up a back log of notes and record keeping, and out pops the flyer. And with it all my notes.
This time I call the Macula Vision Research Foundation and a lady answers the phone directly. When I asked her about the flyer, she gives the same story as before. The physicians office has the information, they print the labels, and send out the flyers. But wait, this flyer does not have a label - it is printed on with my address. Oh, well thats different. We got your information from a staff member at Ophthalmic Subspecialty Consultants. Can you tell me who in the office gave you that information? “No, I don’t want to give you her name”
Shocking that these people think it is okay to get my information from one of my physicians, take two calls to find out that they actually have it in their own systems, AND refuse to tell me who gave it to them or when.
I did ask them if they have given my information to anyone else, and in a rather insulted voice she told me that “we never sell or share any information”. I give that statement a very low level of confidence given how they obtained my information.
At this point, I ask the same question as last time - do you have any of my personal information? ”Why yes, and if you just spell your name”. This is a total 180 from my previous call where they pleaded ignorance and no guilt in not sending out the flyers, not having my information, and telling me to go talk to my physician. She gets my name, looks it up, and tells me she removed it from their system. At this point, I do not believe them for one minute. There is zero credibility on the part of Macula Vision Research Foundation and their handling of my personal information, stolen, obtained illegally or legally from what ever source. Zero credibility.
Do not donate to the Macula Vision Research Foundation. Do not donate or trust any information coming from their, their mailings or their web site mvrf.org. Their use of the name Mary Betty Roeder to send out the mailings for free is clearly a way for them to steal postage from the USPS. Now was Mary a speaker at this event? Yes, she was the speaker for the 3rd and 4th topics. So I am sure there is some legal justification for their using the steal postage from the USPS rate. But was this a solicitation? Yes. Was it bulk mail? Yes. Was it sent to anyone who requested it? No. Hell no.
If you have every been to a physician for retina detachment, macula issues, or any other related eye conditions, I urge you to immediately contact mvrf.org at their toll free number 866-462-2852 and have them remove your name from their records and stop any sale or use of your stolen personal identifiable information they may have obtained illegally or without your express written approval. By them or any other related thir dparties
These type of scum bag tactics by organizations hiding under the righteous umbrella of being a charity is bullshit that has to be stopped. Don’t let your personal information be stolen and used by these people or anyone like them.
Macula Vision Research Foundation
Five Tower Bridge
300 Barr Harbor Drive, Suite 600
West Conshohocken, PA 19428-2984
Phone: 610-668-6705
Fax: 610-667-1459
Toll free: 866-462-2852 (866-4MACULA)
Email: lea@mvrf.org
Directors
Karen and Herbert Lotman
Executive Director
Lea S. Bramnick
If you have been the vicitm of their tactocs and attended a seminar, and gotten some benefit, bad for you. Good that you obtained some useful knowledge, but bad that your personally identifiable information was taken from you and you did not know. Identify theft is everyone’s concern. And you need to you that you have been victimized by these people and their conspiritors.
Your physicians office had you sign a release saying that it was okay to share your information with this group? Then shame on your physician for not spelling out what these third party related groups means, and giving you a very clear option to opt out on this sort of garbage. It is your information, and your privacy. Everyone has to respect that.
Posted by Jim on January 17, 2008
The suit alleges Vernell then told her he was going to perform a “strip test,” and placed a strip over her eyes and told her she must keep her eyes closed for 5 to 7 minutes. He then reclined the examination chair and raised her legs onto another chair, at which point Tesfaye “felt her right shoe fall off,” the suit states.
Note to Jim, please print this story out and bring it to my next eye exam with Dr. Raber and ask the girls in the office if they want me to untie my shoes. Note wether they laugh or not.
read more | digg story
Posted by Jim on March 23, 2007
We took a trip to Wills Eye Hospital ER tonight. We had an old business friend who we bought custom clothes from years ago over from 5 to 7PM. After he left, I grabbed a slice of pizza, drank some iced tea (no calorie stuff), and turned on the living room TV with the kids. A few minutes latter, the pain in my right on switched on. “The Pain” is lots of discomfort, blurred vision, mild pain and irritation, lots of water, and my eye lids shutting. This occurs every so often, mostly in my left eye. This problem always occurs in only one eye at a time.
During my last Retina examination, I brought this up. The Retinal surgeon listened, reexamined me, and when I asked him about going to the ER at Wills if it happened again, he said absolutely. And added have them call us or whomever is on call if they find anything. So with the reassurance, 2 weeks later, I was sitting in the ER.
Nice staff, very caring, quick service since the ER wasn’t busy. End result - nothing. By the time I was out of triage, I had heavy tearing, redness and blurry vision. As we sat waiting for the doctor, I told Anna that it is going away. The doctor, and a visiting resident from Germany both checked me out thoroughly, and found nothing to explain all the symptoms I experienced. If a small cornea scratch that was a little bit old. Then I was sent home with gunk in my eye and a prescription for a few days of gunk to add for healing and comfort.
I see the corneal surgeon next Friday, so I will give him the notes from tonight. Last time this happened? 4 weeks ago, in the left eye I think, but it might have been the right. Then it was from 1:30 PM through about 5 PM or so. I know because Anna was in the hospital and I had to get the kids. I had to drive the car with one hand on the wheel and the other propping my eyelid open so I could see. Not a safe way to operate a vehicle.
Posted by Jim on December 16, 2006
Every time I hear the song Connected by Stereo MC I think about a great video. The song would make an excellent score for a video describing my retina detachments and vision problems.
The writing is on the wall to show vision changes from eye charts. Stumble you might fall a clip of a guy not walking right and tripping. something I have done often. Get yourself connected to show clips of athe surgical procedure.
Anyone making a segment on low vision or retina detachment. sign me up.
Of course if I had any video talent I could put it together. but I do not. Wonder if there is a site to find video talent looking for fun projects to work on?
Ah ah
Something ain’t right
I’m gonna get myself
I’m gonna get myself
I’m gonna get myself connected
I ain’t gonna go blind
For the light which is reflected
I see thru you
I see thru you
I see thru you
I see thru you
Ya dirty tricks
Ya make me sick
I see thru you
I see thru you
I’m gonna do it again
I’m gonna do it again
Ah ah
I’m gonna do it again
Gotta do right
‘Cause something ain’t right
Gotta do right
Come on
If you make sure you’re connected
The writing’s on the wall
But if your mind’s neglected
Stumble you might fall
Stumble you might fall
Stumble you might fall
Ah ah
Ain’t gonna go blind
I see thru you
I see thru you
I’m gonna get myself
I’m gonna get myself
I’m gonna get myself connected
I ain’t gonna go blind
For the light that is reflected
Hear me out
Can ya hear me out
Can ya hear me out
Do it again
Do it again
Do it again
Do it again
I wanna do it again
I wanna do it again
I wanna do it again
Ya terrified
Ain’t gonna go blind
Ain’t gonna go blind
Here we go
If you make sure you’re connected
The writing’s on the wall
But if your mind’s neglected
Stumble you might fall
Stumble you might fall
Hear me out
Stumble you might fall
Interstate 5
Stayin’ alive
Won’t someone try
Open up your eyes
You must be blind
If you can’t see
The gaping hole
Called reality
Wanna do it again
I gonna gonna do it again
I wanna do it again
Come on
I’m gonna do it again
Hear me out
Terrified
Something ain’t right
Here we go
If you make sure you’re connected
The writing’s on the wall
But if your mind’s neglected
Stumble you might fall
Stumble you might fall
Stumble you might fall
Posted by Jim on June 29, 2006
From: detached-retina@yahoogroups.com On Behalf Of Jim Skamarakas
Sent: Thursday, June 29, 2006 8:12 PM
To: detached-retina@yahoogroups.com
Subject: RE: [detached-retina] scuba diving
Probably me or someone in the same boat, pardon the pun. I am a PADI Dive Master, and my primary RD surgeon is also a diver.
You can dive, after a period of time. The best source for diving medical questions and concerns is 3 places.
- Your primary physician
- A diving physician. There are around if you live reasonably close to a large body of water, but also look for a bariatric treatment center
- Every diver should be a member of DAN. The services they provide and the information they make available are an invaluable resource for us all.
One of the biggest concerns, is once cleared by #1 for general physical activity and swimming, you need to check the specific medications you are on, and their effects under pressure.
Having been in technical diving programs for deep air and deep NITROX, I would not ever expect to go below the recreational depth limits of 60; again myself. Not for any reason other than:
- Fear
- Not wanting to blow out my eye ball and have to listen to my wife
- Not wanting to risk what vision I have now for the rest of my life for a moment of fun
#3 is also what keeps me from driving on bad driving condition days even though I know I could do it. I think testosterone has a lot to do with stupid things men do, and I will tell you that I can dive back down to 183 feet in a heartbeat and I can drive to work in the left lane doing 75 while it is raining with slick roads and fog making it impossible to see 20 feet in front of me.
But then I blink and think of supporting my family, and just take things differently.
Even cleared to dive, and as much as I want to sit my butt back on the wreck where I took my first narc hit with a good friend one sunny afternoon off Ft. Lauderdale, I know I will never see that spot again. And not because #1, 2 or 3 told me not to. I know my arch nemesis is overhead projectors, and I don’t want to give them any more ammo to put me out of work or make it happen more often that I cannot read the E on some eye exam days. It happens enough know. And if it does get worse, as a natural result of my RD, AND I push it with diving, I will have to listen to it being my fault till she carves it on my headstone. And as much as I do not want to listen to that speech, I more don’t want to put my family through the consequences it would bring.
Sorry for giving too short of an answer. If you have any specific questions on mixes, masks, filtered masks, custom lenses or anything else, feel free to ask.
From: detached-retina@yahoogroups.com On Behalf Of lucas sultan
Sent: Tuesday, June 27, 2006 3:16 PM
To: detached-retina@yahoogroups.com
Subject: Re: [detached-retina] scuba diving
I reckon if I were a shark, i would be the one who is more scared.
tuxette <feitpingvin@yahoo.no> wrote:
Hi again,
I remember one person who posted here about being able to scuba dive
after a RD but I’d like to hear from others who have been able to dive
after RD/retinal tears…
I’m especially concerned about my fluid problem (fluid buildup behind
my retina that seems to enjoy being there) and would like to hear from
others who have had similar problems/experiences. I’m going to Cape
Town, South Africa this fall (or was it spring?) and would like to
dive with the sharks 
(Yes, I’m going to ask my doc too
cheers,
tuxette/feitpingvin
Posted by Jim on May 9, 2006
Retina check up yesterday deep, clear, quiet, the usual good news about stuff sitting good with no laser or buckle problems. Eye exam was 20/80 / 20/60 with pinholes in the right and in the left E. With pinholes, some squinting and eye rubbing, I can do the right most letters on the next line down, and the third is grey. Its funny how on the usual eye charts there is no result for is the letter black, grey, whitish or just not there. Just what is the letter. Someone should come up with a retina version of that chart.
Next Friday is the cornea follow-up should be the same.
Its good being stable, but funny and tough at the same time to walk out of an appointment with 20/80-20/60 and E and be doing good. Not an easy thing to relate to an average co-worker. Even after 2 years
Posted by Jim on April 10, 2006
A guy that sits next to me was having some eye iritation today. So we got to talking about eye remedies. So I jotted down this note and sent it to my RD list. Enjoy
For me its Pepsi, unless it’s not available, then it’s a coke. Funny how a simple soda drink with its water, sugar and caffeine can have an effect on the headaches caused from blurry vision, floaters and all the other gunk we have to look at and through each day. It does nothing for the blurry images itself, but the ingredients, getting it, and taking it during a break can.
- The caffeine and its effects on our body, even in the small dose
- Plus the sugar
- And the simple concept of getting away from the computer, getting out of our hairs and walking to the vending machine for a break, breath of fresh air and a clearer attitude
A mix of common horse sense medicine and psychosomatic.
And it also doubles as an ice pack when the pain is too much - just rest the cold can or plastic bottle up against your face.
Posted by Jim on April 8, 2006
An individual with RD asked on one of my discussion lists, and the replies and mine where interesting so I thought I would share
From : kumanakaya
Reply-To : detached-retina
Sent : Thursday, April 6, 2006 11:44 AM
To : detached-retina
Subject : [detached-retina] Re: coping?
These are great posts, as usual. How do I cope? Hmmm, I talk to my husband about how I am feeling, insecure, angry, frustrated, alone, helpless, and we talk about how to deal with these issues. If I can come up with a plan most of the time I’m off and running again. He’s disabled (back surgery) so he knows the frustrations of having the boundaries of what I can and cannot do adjusted for me. I am making plans to take a trip to Europe next year. I may not make it there, I don’t know how I’ll get around yet, but planning something exciting in the future gets me out of my funk.
I am slooowwwwllllyyyy coming to accept what I cannot change my vision back to what it was, but I keep pushing the envelope of what I think I can and cannot do because I think sometimes I settle too low. My sister asked me how I dealt with depression. My first reaction was, “I’m not depressed (emphatic).” but then I started to think, I sleep a lot, I’m not motivated to start anything new right now, maybe I am.
I work four 10-hour shifts so I can’t sleep too much (smile), my grandkids stay with us during the week (two pre-teens) and I found a really good book in large print “The Historian” that I’m knee-deep into, but if I didn’t have to work and didn’t have so many distractions, my tendency right now would be to sink into a bog somewhere and vegetate (not a good thing to do I’m sure). Making myself go out and then giving myself a reward helps too (go to the mall and get a Cinnibun). The more I get out the more I realize that everyone has handicaps, some are more invisible like mine, and some and more visible. Besides when I’m active my attitude is much more positive.
These are great posts, keep me thinking and moving forward. Thanks everyone!
Joanne
— In detached-retina, “Jim Skamarakas”
I stop washing my hair in the shower and get into a better lit room. Or I hold my wife’s hand tighter till the movie house lights come up or the picture starts
Or I pull the car over at a rest stop and go walk inside and grab a drink or buy a lottery ticket or use the restroom and walk around for 30 minutes rather than sit in the car waiting for things to clear up. Be it the weather or my vision.
My current arch-nemesis though has become the overhead projector in conference rooms. Can’t leave the meeting, can’t walk around, can’t not watch the screen and the speaker. The best I have been able to come up with for this is volunteer to take notes. It gives me something not disturbing to my vision to watch.
Once the medical work is done, you are on a lifelong path of dealing with what you have - and it’s as good as it’s going to get can be frustrating, sad and make you mad. But it’s a burden you have to carry. Most likely the rubber band that presses on my left eye is different from anyone else on the list is different from their exact floaters is different from their ability to drive or read or watch TV. But you are not alone - RD and the other things that happen to take you from 20/20 eagle eyes to something else don’t stop you from being you. They just present and obstacle that once you get past it, you will be better for the experience - it strengthens you.
_____
From: detached-retina On Behalf Of Tony
Sent: Wednesday, April 05, 2006 11:01 PM
To: detached-retina
Subject: [detached-retina] Re: coping?
— In detached-retina, “rayeulita” wrote:
— I was wondering, what do you guys use as coping mechanisms?
I used to smoke, but no longer have the desire except when the fear about my vision overwhelms me…and even then…I know I don’t want the cigarette, but what the cigarette used to be able to do for me.
In fact, I start to get mad at the cigarette for sucking so much and not being there for me anymore. Just kidding. Anyway, I’m in search of what I can do to calm myself down when I start getting into that cycle of paranoia…Another mechanism was to dive into work/study/reading but all of those require lots of visual concentration which doesn’t do much for taking my mind off things.
— Btw, I’m an American working in Seoul, Korea.
Hello rayeulita, ya know when I get like your discribing, I just go outside and sit and I think of all the children in this world who are dying everyday from cancer and all other things in this life and I think about how lucky I am to be a grown man and have survived all theses years and realize how lucky I am to still be here and how much I love life and all the anxiety seems to just go away… maybe it will help you cope
