I Told You So!

I admit many faults in these pages. One of my many faults is enjoying saying “I told you so!”

OK, that’s out of the way, Lin suggested I write a page admitting I have run out of things to write about. My muse has taken a vacation. I have had very few clues what to write about and I have been grasping at any and all ideas.

I have also gotten busy again. The girl has all sorts of crazy things on the calendar. Lots of work and more than my fair share of play. Many years ago I decided I would go to my death-bed with very few regrets. I don’t like to say “I wish I had”.

As opposed to liking to say “I told you so!’ bringing me back to my topic. Lin said I did not need to worry. She said I would never run out of idea. Ha! Sometimes she knows me very well and sometimes she doesn’t.

The point is this: I am in a place that is almost the normal (and I use that word very tongue in cheek) me. I am living MY life. I am not living a pale substitute nor am I always settling for second or third best. My life is full.

And I am doing it visually impaired.

Is this state of affairs going to last? I sincerely doubt it. I am 64 and ridiculously, blessedly healthy. May not last. I know the 64 part is not going to last. Where do the years go? Weren’t we just 24 yesterday?

I have dry AMD with geographic atrophy. My blur is not too bad. With my toys I make do. The only thing I really (really, really) miss is driving and my support system is beyond awesome. Will my vision worsen? Probably. Will I not be able to participate as I would like? Dunno. Perhaps. Probably?

But if and when my vision does get worse, I will have a lot of thoughts about that new part of the journey. Probably be back to writing every day for a while. In many ways these pages have been my therapy. I will need to vent.

In the meantime we are again looking for people with something to say. People who are in the throes of the battle instead of on R&R for a while. Some people who can help others through the journey by sharing their unique experiences.

Until we find these people, Lin will republish earlier pages. I will occasionally chime in with something new, mostly informational at this point. Be assured I will not hope to have a decline in vision just so I have something to write about! I am hoping this lull lasts for a very long time.

There we are. I am out of ideas. I told you so!

Written September 26th, 2017 Continue reading “I Told You So!”

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Bad Press!

Being a little aggravated here. I was online doing a search for what is new in AMD and came upon two, January, 2017 articles in WebMD. I found the first one, Age-Related Macular Degeneration Treatment, 1/12/17 to be wildly misleading. Nowhere in the article did it discriminate adequately between the two types of AMD and it implied anti-VEGF and similar treatments are effective with both forms of AMD. Not hardly! REALLY ticked me off.

I searched until I found a contact number and shot off an email. See if they answer me. See if they actually have the guts to admit the article is misleading. I asked they pull it and give it a rewriting.

You know Lin and I are educators in ‘another life’. You know we try very hard to bring you nothing but quality information…and a little goofiness on my part.😋 Therefore it is upsetting to us to see misleading information coming from what is generally a respected source. Really! We do our homework and we don’t even get paid for it! The least these people can do – being paid, by the way – is the same.

That said, no one is perfect. If you find anything, ANYTHING you question on this site, shoot us off an email and say something. We will research it further and get back to you. Don’t be afraid to upset us or to make waves. I get mad but I get over it, especially if I can be proven wrong. Then I feel stupid and apologize. [Lin/Linda: what Sue said.]

If you find anything in the press you question, send it along. We can look into it and see if we agree with you that it is, at best, ‘off’. I write a really good, intellectual-sounding and polite email that boils down to “do you have a freakin’ CLUE what you are talking about there, honey????” I don’t mind writing them and I do occasionally enjoy a good rant. Gets the juices flowing.

Bottom line is we aim to inform and we aim to inform accurately. If that is not happening, you have the right to send us your own emails and set us straight.

We are on this journey together. Feel free to help us stay on course. Continue reading “Bad Press!”

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One Year Anniversary: Part 3 Our Friendship, Our Project

Lin/Linda here.  A year ago this month, Sue and I were discussing how to get together in August when I would be in Western Pennsylvania.  We had also been talking about how I might find a job because, to be honest, I really wasn’t challenging myself enough. Plus, I’d just been through several years of one traumatic event after the other and I knew it was time to move on.

On January 31st, Sue had gone downhill skiing. You can read about that in A Perfect Storm.  It wasn’t long after that when I knew things had changed. Over the years, we’d settled into a routine of exchanging emails not phone calls or texts – they were reserved for sharing mostly bad news and we both had our share of that. So I knew things had gone seriously wrong with Sue when I started getting texts from her. I got a particularly upsetting one after an appointment with her ophthalmologist so I picked up the phone and called her. “I’m not an old person! This only happens to old people!”

I cannot tell you how hard it was to be 700 miles away at that moment!

There were frantic emails, texts, phone calls. She was having panic attacks. I had panic attacks but Sue was the last person in the world I’d expect to have them so I knew this was a serious situation. She said in an email “I am pretty much sick with dread.”  What can I do to help? ::gulp:: I honestly did NOT know.

It was in an email to me on February 13th when she said “Just had a curiosity, have you ever written a blog? I was thinking it might be both good therapy and a way to share some of this ‘nonsense’ and knowledge with other people.“ I told her I hadn’t but that I was sure I could do something.

The rest, as they say, is the history of how the website got its start.

I struggled to get my very-much-out-of-practice brain focused on learning the software I needed to create the website for her journal pages. At the same time, I was emailing with Sue daily, sometimes several times a day, to keep up with what she was doing. I spent half my time in the early days trying to figure out what she meant in her emails when she was trying to learn to dictate them.

I wish I’d saved them all but I didn’t.  Two notable ones:  she wrote about her neighbor’s ‘brisket ankle’ which was a ‘broken ankle’ and ‘toxo plus Moses’ was ‘toxoplasmosis’.  ::big grin::

The website part of the project went ‘live’ with the first of her pages on February 25th. There were glitches but Sue and I we developed a routine that is still in place (you can read about it in About Our Project). Somewhere along the way, I volunteered to do research and create the blog part of our project so that we could provide up-to-date information.  We added the Facebook group on May of last year.

Sue wrote about what she learned. As for me, I have been reminded that when it comes to doing the research, it’s as Aristotle said: “The more you know, the more you know you don’t know.” I learned a lot about macular degeneration of various types, of course.

I learned that we know so much more about macular degeneration than we did 10 years ago and that there is a lot of hope for the next 10 years.

And I did learn that my brain does still work – most of the time – after some coaxing and as long as I’ve had my second cup of coffee. ::grin::

What I did NOT learn, because it is not news to me, is that my dear friend Sue, when faced with adversity, has an amazing ability to rise above uncertainly and fear. And she has done this with honesty and humor, two of her most endearing qualities (of course there are many others ::grin::). It’s been a roller coaster year for her and I’ve been beside her on the ride – we both have had enough of that. There’s some comfort taking the Ferris Wheel instead!

written 1/26/2017

Continue reading “One Year Anniversary: Part 3 Our Friendship, Our Project”

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One Year Anniversary: Part 1 What I’ve Learned

First week of February, 2016 I started my life as a visually impaired individual. Those were not my finest hours. My left eye had been ‘gone’ for at least six months. Maybe longer. I still did not miss it all that much.

“In the land of the blind the one-eyed man is king.”  (Desiderius Erasmus Roterodamus).

I was able to do just fine with my right eye and never considered myself to be handicapped. I stood above that level. I was highly capable and doing just fine.

I also never considered my second eye could fail me virtually overnight. Still, believe it or not, it happened. I went from being a fully functional professional to someone who could not see to read a computer screen and who was having three and four panic attacks a night. Like I said, not my finest hours.

Fast forward to the first week of February, 2017. I write this a couple of weeks ahead of time and hope to Hades nothing falls apart until this gets published, but I want to tell you, on this the first birthday of my ‘new life’, I’m okay. (Unless all hell break loose again, in which case, all bets are off! In that case, please ignore this page 😎)

A year ago, I had my doubts. Big doubts that life could ever be livable again. You might be there right now. You might be wondering where you will be in a year.

I stand here to tell you it is not the same, it is not perfect, but it is not as bad as you imagine it could be. Humans are highly adaptable creatures if they give themselves permission to be so.

Allow yourself to grow and you will surprise yourself. Promise.

What else have I learned in the past year? More than I EVER wanted to know about eyeballs and progressive, degenerative retina disease. It has become my ‘hot topic’. Get me started and I can clear out a room! Suddenly everyone else has something he needs urgently to do!

I have learned I am surrounded by some of the finest people in the known Universe.

That is both on and off planet🚀. People are incredibly kind and want nothing more than to help.

I have learned there are amazing devices and futuristic research out there.

Much of it is aimed at improving the functioning levels and the lives of us, the visually impaired. When I say this is the best time in history thus far to be going blind, I am not blowing sunshine up your skirt! It is ever so true. We live in amazing times.

Am I going to be able to function this well for ever? No. Progressive, degenerative disease here. I know it is eating away at things in there. I know one of these days I will have to quit work and become even more dependent on others. But see paragraph above. I do not believe I will be blind forever. I have serious hope and I believe that even if I go blind, I will see again.

So for now, 365 days down. One day at a time for however long it takes. Continue reading “One Year Anniversary: Part 1 What I’ve Learned”

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My Soapbox

October 18th and it is above 80! Not sure what is happening. Global warming?

Anyway, I have an offer to go to the last, open-air yoga session of the season. Sold!

People are too dang good to me and I love it! I would be a sniveling lump in the corner without everyone’s support. I don’t do well twiddling my thumbs.

Worked hard all day. I am thinking I goof off less now because I have something to prove…or I think I have to try harder so they get value for their dollar and to make up for my disability or something! Be that as it may, a few things got done. You know how it is: nothing is ever straight forward. 27 things you need for the job have to be found or fixed before you can get one thing done.

I was at a conference yesterday. Six continuing education credits down and 24 to go! At least I am doing better than I was.☺

They said they were going to have a low table for me. No such luck and I ended up sitting on the floor again. I arranged my Justand, papers, diet Pepsi, etc, around me and got as comfortable as I could.

Thank goodness I am a floor sitter from way back. Learned a lesson, though: don’t expect a table even if they promise you one.

The Justand caused a stir. People asked about it and I gave out the website address a few times. Everyone has a mother, a brother or a cousin with AMD, it seems.

Lin and I have decided it is time for business cards. Ain’t we just so professional?😋

I guess the lesson from yesterday was to not be afraid to talk about your vision. People are receptive. They are helpful. For every one of us out there in the world trying to make it, how many are there huddled at home, depressed and afraid? How many have no idea of the support that is available? I am thinking it is part of our job to make sure the word gets out. Also, lead by example.

OK. Off my soapbox, but I thought I was rather stirring!😘

And speaking of supports, I emailed my low vision specialist today. I wanted to know how to get a replacement for my Max TV lenses. The one lens has fallen off about a dozen times and now it won’t focus well.

I have to return the bad pair and she is mailing me a replacement. Yippee!  She said she has never had a pair break before. What can I say? My husband always says I am hard on parts!

Gotta get ready for yoga. Chat with you later! Continue reading “My Soapbox”

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I Have Macular Degeneration…Now What?

If you aren’t familiar with how to move around on our website pages, click here

Where can I quickly find information about AMD?

One of the best resources available is from the Prevent Blindness organization’s website called Guide Me.  You answer a few questions and you will get a personalized guide with important aspects of AMD based on your answers.  Click here to go to Guide Me.

What other websites are helpful?

Here are some of our favorites:

  • Click here to read Are You a Senior Citizen Struggling with Vision Loss?
  • Click here for a video that covers important information about AMD
  • Click here for a description of dry vs. wet AMD (we are not recommending any products in this article)
  • Click here for an article about depression after diagnosis (which is common)
  • Click here for some answers to common questions about depression after diagnosis
  • Click here for an article about how vision rehabilitation helps prevent long-term depression
  • Click here for a very comprehensive page about wet AMD
  • Click here for a very comprehensive page about dry AMD
  • Click here for an article about how fast AMD progresses
  • Click here for 10 questions to ask your doctor
  • Click here to find a support group
  • Click here to find out should I take the AREDS or AREDS2 supplements?
  • Click here read about the role of nutrition in AMD
  • Click here for eye healthy foods including a Healthy Vision Grocery List
  • Click here for a January 2017 scientific review article“Nutritional and Lifestyle Interventions for Age-Related Macular Degeneration: A Review”
  • Click here to find out what vision changes/symptoms to look for
  • Click here to find out about the people who can help you (what are the differences between the types of eye doctors, do I need to see a specialist, etc)
  • Click here for tips on how to make the most of the vision you have
  • Click here for a FAQ (Frequently Asked Questions) that answers a long list of questions such as ‘will resting help my eyes?’, ‘Can I see for myself if my retina or macula shows any signs of damage before I have symptoms?’, ‘why don’t new eye glasses help?’, ‘what is meant by degeneration?’, ‘is a macular hole the same as macular degeneration’, ‘I have had dry MD for years. Does this mean I’m going to get wet MD too?’, ‘No one else in my family has MD. Why did I get it?’, ‘can drusen be treated?’, ‘I have changes on the Amsler Grid, does this mean I have MD’, ‘I have Wet MD but my Doctor says there is nothing he can do or no treatment available. Why is this?’

Where can I do more research?

Of course you can do searches on the Internet – there is a LOT of information there.  We have done a lot of research and here’s how you can find it.

  • through Sue’s Journal Pages. Sue became visually impaired early in 2016.  She is a psychologist trained in Dialectic Behavior Therapy (DBT), a cognitive behavioral therapy, and she writes about how she is using it to help her cope with this vision loss.
  • on our Resource page where there are links to many sources of information such as what is AMD, what is Stargardt’s Disease, organizations and websites with useful information, support groups, videos, books & reading materials, where to find vision services, where to find financial help especially for injections, personal stories, the science stuff, clinical trials & research (and how you can become part of one,  online newsletters, symptoms, possible causes/contributing factors, treatments, coping, how to take care of yourself…and more!
  • and in the posts in News/Highlights blog

There are more ways to get information from our website

Search or select CategoryYou can actually do research ON OUR WEBSITE!  You can find things such as in which of Sue’s journal pages does she talk about depression, where can I get more information about sunglasses or vitamins, etc.  If you are using a computer, for example a laptop, you may have seen the search box plus words under Categories and words under Tags/Keywords on the right side of each page. If you use a tablet or smartphone & the screen isn’t wide enough, unfortunately you have to go all the way down to the end of each page to see these sections.

Do you want to know in which pages Sue talks about depression? You can type the word depression (you can also type multiple words) in the search box or select the word depression under Tags/Keywords and you’ll get all of her pages where she talks about it plus you will get any of the News/Highlights posts as well as any matches in the Resources/Links or News/Highlights pages, too. If you want to find everything on our site about sunglasses, you could type the word into the search box or look for the word under Tags/Keywords and select it.

Tags/KeywordsIf you want a broader range of pages & posts such as ‘Tips for living with low vision’, you’ll see that under Categories.

 

 

 

 

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I’ve set up this page so that when you click on a link (words that are underlined & in blue or green), a NEW tab will open in your browser and this page STAYS WHERE IT IS.  When you are done with the new page you opened, just close it.  You do NOT need to use the back option.  If you click on a link and the new page replaces this one, I’VE MADE A MISTAKE so please let me know by sending me an email at light2sight5153@gmail.com.  Let me know exactly which link or links do not open a new tab or window.

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Linda & her dog Chase
Linda & her dog Chase

To find about more about me, about Sue, about our project, go to the menu at the top of the page for sections about each of those.

 

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Your Cards and Letters

I step out of the sequence because I believe in prompt reinforcement. It is a basic tenet in learning theory. If there is a behavior you like, reinforce quickly. Otherwise too many things happen in between and the kid may decide you have reinforced him for another behavior. We don’t want Johnny thinking he has gotten the sticker for picking his nose in class, for example. (Sorry. Mind works in mysterious ways, but you get my point.)

I want to say how pleased I am with the comments that have come in! I love class participation! Things go better when we share our experiences and help one another.

Many of you may not think you have anything to share. Not true. You are accumulating experiences and knowledge along the way just as I have been doing. The only difference is I have the digital age version of ‘diarrhea of the mouth’ and I don’t know when to stop dribbling these things out! This page is getting sort of ‘I C K!’ Isn’t it? [To Lin: And, no, that does not need to be capitals but autocorrect insisted 7 TIMES that I was trying to write ‘pick’! Does that make sense????? Nooooooo. Lin, I tell you half of the mistakes are not my fault. It is autocorrect. Really.]

Anyway, back on track, if I am actually capable of that…..I love the sharing. I like the idea of the LED lights and the thoughts on transportation and shopping as well as the other helpful comments.

I like the personal reflections on how AMD is affecting lives. I even like the compliments although sometimes I think people lay it on a bit thick! 😳 (That’s what comes of having friends as subscribers. My ‘ringers’ in the crowd who make me look good!  Thank you!!!! Love you, too, but I am still just your simple, country psychologist. 😘)

The other nice thing I like about comments is they are food for thought for me. Those of you who have been living with AMD know there are long stretches of time when pretty much nuthin’ is happening. Sometimes I really have to dig and work this poor little head to come up with ideas. Everyday is not joy or angst. Some days are just plain old dull.

So there you go, keep those cards and letters coming. Love to hear from you!

written 8/20/2016

Continue reading “Your Cards and Letters”

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