Make the Safe Call

Hey. I had a real chock full day planned today and what do I do? Nothing. Pretty much nothing. Bummer.

A friend and I went for a Japanese hibachi meal last evening. About three hours later, my system revolted. I will spare you the details, but it really was a waste of what had seemed like a nice meal. After I was finished ridding myself of dinner, I slept poorly. (Wasn’t food poisoning. I KNOW how that acts. Just got a hold of something my system refused to digest).

Now, my plans for the day had me in town, navigating from one activity to another from morning to mid-afternoon. I would have been on my own. My husband was motorcycle riding with a friend.

Had it been two years ago, I would have tried it. I could have taken myself home when I needed to. Cut the day short. Now I don’t have a car. Now contingency plans like that don’t exist for me.

I thought about it. What would happen if I got sick again? Huddled in a corner somewhere until someone had pity on me? Spend 20 minutes praying I did not vomit in their car? Nothing like that seemed like a good option. They were not good options at all.

So I allowed discretion to be the better part of valor. I turned off the he alarm and went back to bed. Spent the day hanging out at home.

I like to think something like this won’t happen again but I know it will. Without the ‘escape hatch’ having your own transportation can afford, many of the marginal calls that I would have said “go for it!” before will now have to be “no”. That really is limiting. It is depressing. I do not like it at all.

So, the game plan? Keep myself as healthy as possible. Be grateful for everything I am able to get to, everything I am able to do. Beyond that I guess it just comes down to acceptance. I cannot cut it as close as I used to. I cannot make the marginal call any more. Sometimes I need to use a little discretion. Make the safe call. Damn.

written October 15th, 2017 Continue reading “Make the Safe Call”

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 0/5
Applies to topic
Avg: 0/5
Helpful to me
Avg: 0/5
Make the Safe Call
Total Avg Rating: 0.00 out of 5 with based on 0 rating(s)
Overall quality
Applies to topic
Helpful to me

Just Relax

Hello! Woke up this morning to find my husband online shopping! This is a great move forward considering how technophobic he used to be. I may not be 100% crazy about his purchases (do we really need that?) but it is a bit comforting to know he will know how to get online, shop, pay, etc. if/when my eyes get too bad.

My husband found an ad for Labrador Retriever pups so I called. The litter they have now will be ready right before we leave for vacation but a second litter they knew of will be ready right after we get back.  Cautiously hopeful. We will go and look at the set-up, parents, pups next week.

And yes, I know, I should get a shelter dog, etc. I am guilty but …..puppy!

I am about halfway through my crazy list of activities for October. Sort of loaded heavy in the beginning of the month. Gives me time to load the back end. I did NOT say that! Did I?

Anyway, so glad to hear our guest authors are also busy people. Riding horses and volunteering for all sorts of community projects. You go, girls!

Any of you guys want to volunteer for a page? I think Lin said at least 25 or 30% of the Facebook members are guys. How about a male perspective ? I also was told some of you are eye care professionals. How about the view from the other side of the machine?

We never did fly yesterday. Point of information: balloon pilots (captains?) will not launch if the winds are more than 8 miles an hour. Nate is making its way up the coast and we got some of that. Maybe. Anyway, it was windy.

My friend who took me (you ever feel like baggage when you say that?) is my fitness freak friend (alliteration!) and was driving both herself and me insane when we had to wait two hours to see if we could fly. I sent her to run – literally! – twice. She did about four miles.

My friend does not know how to relax. It is an art many people do not know. I can do it for short periods. For those two hours I lay on my back, watched the clouds and listened to the entertainment. I am not looking forward to two days of downtime when we are literally at sea on the upcoming cruise. Last time that happened I did a lot of pacing.

So how to relax when you cannot run it off or pace the deck? I found a Psychology Today article from 2013. The author, Will Meek, had distilled the relaxation process down to five steps. His process involved ways to change your physiology to change your emotions. Dr. Meek, Will, suggested orienting yourself to your environment. You do this by taking in sense impressions to recognize where you are. Then you ground yourself by noticing how you are connected to your environment. Right now I am noticing my butt on the couch, my laptop on my knee and the dishwasher humming in the next room. Next Will suggests an inner focus on your breath and heart rate. Deep breathing. While still breathing deeply give yourself a pep talk. Tell yourself you are strong. Tell yourself you have supports. Tell yourself Jesus or Allah or whatever deity you believe in has ‘got’ this problem in hand and will help. Tell yourself what you need to tell yourself to feel more in control. The last step is emerging. Focus on bringing yourself back to your problem with a relaxed attitude.

Now this page is about 100 words too long already so I am signing off here. May be back later. Never did get that article critiqued. Bye!

written October 8th, 2017

Continue reading “Just Relax”

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 0/5
Applies to topic
Avg: 0/5
Helpful to me
Avg: 0/5
Just Relax
Total Avg Rating: 0.00 out of 5 with based on 0 rating(s)
Overall quality
Applies to topic
Helpful to me

Be Prepared

I have decided a poor memory and poor vision leading to no driving is a bad combination. Once again what I planned to work on got left at the office. Really thought it was in my bag.

I have been roaming the house, picking things up, doing laundry and filling the dishwasher but we all know keeping house is not my shtick. (Just take a look at this place!) I did bring one file home to work on. Should do it but I have these articles on disaster and the visually impaired that I ran off, so…

Sue redux! Explain to me why I thought I had actually shut up!

Disasters – and this time I am not talking about my housekeeping – and visual impairment are another nasty combination. According to a 2007 American Public Health Association article, eye injuries are very common during and after all kinds of disasters but yet, at least ten years ago, most emergency response teams know very little about managing eye injury and other problems.

I looked for more recent articles saying they had beefed up the eye injury training for first responders in the last ten years. I found nada. That means these people could very well be scrambling to deal with stuff like penetrating eye wounds, chemical exposure and retinal detachment, not to mention infections and other such things with very little training and materials to do the job. And that means, my dears, we with our progressive vision loss condition are on our own. Not that I would not want the guy with the pierced eye ball to go ahead of me in line, mind you. Just saying, we need to expect to be very low priority.

Wisefamilyeye.com – love your logo! – did a page on preparing an eye emergency kit and putting it in your go bag. They suggest spare, impact resistant glasses. I suggest also having a copy of your eyeglass prescription. You might want to store it in drafts in your email so you can access it from anyone’s device. Wisefamilyeye.com also suggested safety goggles and sunglasses, artificial tears and saline solution (you might want to add an eye cup if you have one) and at least two weeks of prescription eye drops.

I already touched on clean-up with my mention of my bout with flood mud crud. Flood water contains EVERYTHING you can think of. Sewer plants and chemical plants cannot get out of the way so everything they contained will come to you. Safety goggles are a must. Protective clothing, such as heavy rubber gloves and thick soled boot if you can find any. And face masks. Face masks are good.

Essentially, disaster preparedness is just that: being prepared. The American Federation of the Blind put together their own checklist. Their list included having emergency numbers nearby and knowing who to call to get yourself evacuated asap. This could be either a buddy, the local authorities or, even better, both. Let people outside of your area know your predicament and that you might be coming to visit!

If you have a service animal – or any animal! – make plans for him or her as well. Reasonably sure evacuation services and shelters must take service animals. They do not have to take pets and rumor has it, many people recently refused to go to shelters rather than leave pets behind. Do not allow yourself or your animals to be in that position.

If recent events are any indication, we can expect to have more (and more?) disasters as time goes on. Be prepared.

September 30th, 2017 Continue reading “Be Prepared”

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 0/5
Applies to topic
Avg: 0/5
Helpful to me
Avg: 0/5
Be Prepared
Total Avg Rating: 0.00 out of 5 with based on 0 rating(s)
Overall quality
Applies to topic
Helpful to me

Practice What I Preach

At present I am waiting for the van….again. These pages seem to turn into one big tirade about the truly crap public transportation we have in this rural region.

I got up to get a 6:54 am van to work (having told them I need to be there at 8:30) and I just got the call it would be another 45 minutes until they arrive. Really?!?!? This is on top of being told they could not bring me home Saturday because my seminar is in another zip code, 5 miles away.

I am angry. I am frustrated and I am resentful. Resentment is defined as bitter indignation. It implies unfair treatment.

From the complaints I have heard from the other people who ride the vans, I suspect I am not being discriminated against. Everyone is getting the same lousy treatment. Just the same, it is not fair!!!!!

Yes, I know fairness is an illusion. I know resentment is, as published in Psychology Today way back in 1995, futile and destructive. I am aware my resentment is most likely disproportionate to the damage that has been done.  I am still pissed!

Psychology Today goes on to talk about how resentment is based on internal need rather than external circumstances. If I did not believe I DESERVED better treatment, would I be as resentful? I would say not. I am arrogant enough to believe good things should come to me almost all of the time. Having those ‘shoulds’ in my head sets me up to see things as unfair.

Resentment gives us a target for our frustrations. “This damn transportation company is to blame for my life not being easy! I could do so much more if I only had decent support!” Resentment allows us to forget that while things are caused, sometimes we are not staring at the cause face to face. Things could have been set in motion a long time ago. Your ‘injustice’ may be just another domino ,’victim’ not the agent that set things in motion. Easier to assign blame to what you can see.

So, recognizing that venting my spleen (who said THAT, anyway? Shakespeare?) at the van people may not be productive, I went online and found a couple of articles. PsychCentral.com pushed the empathy angle. Remember “walk a mile in his shoes”? It helps to look at the other party’s viewpoint, their situation. Are they doing the best they can under the circumstances? Psychology Today suggested something’s that sound, well, rather DBT-ish. They suggest you observe your resentment and sit with it for a while. They also suggest relaxation and self-care.

DBT as one-step shopping?

If I actually try to practice what I teach, I would have to admit rehashing all of the nonsense with my transportation situation is not being mindful in the present. The only thing I can deal with is the now. I should also practice some gratitude. Do I have a lot of freedom because the system exists? Yep. May not be exactly the way I want it to work, but it works…sort of.

So, in consideration, perhaps I should be a bit more tolerant. Deep breath…I feel better now. Thanks for listening!

written 9/22/2017

Continue reading “Practice What I Preach”

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 0/5
Applies to topic
Avg: 0/5
Helpful to me
Avg: 0/5
Practice What I Preach
Total Avg Rating: 0.00 out of 5 with based on 0 rating(s)
Overall quality
Applies to topic
Helpful to me

Preparation: Start Now!

Greetings from a rainy Labor Day weekend. Supposedly this rain is a Harvey leftover. We had a ‘little flood’ here six years ago right about this time of the year. What a mess! Hubby and I did not get much of that; we are on a hill. However, I went into town to do some shoveling and needs surveys….Never got so sick in my entire life. Flood mud crud is nasty business, folks. If you are helping, wear masks and goggles. Take any innoculations they offer. I was sick literally for weeks.😷 Once more, try to profit from my stupidity!

Of course, the good news is what doesn’t kill you can make you stronger. Except for the food poisoning I don’t think I have been sick since! 😁

Anyway, in the States Labor Day is the unofficial official end of Summer. That means today before the rain we were preparing for cool weather. The houseplants came in from their summer home on the deck. I picked the tomatoes that had not yet ripened for my friend’s mother. She is supposed to make a mean green tomatoes pie. Ran into a little snag in trying to close the pool, but that will get done before the leaves start to fall.

Preparation. We prepare for Fall. We prepare for holidays. How many of us prepare for vision loss?

Many of you are in the early stages of this disease. I truly believe research will soon make it possible to slow or even arrest the progress of AMD. I believe you could easily be spared the worst of AMD. But just the same, preparation is a good thing.

Harley Thomas is blind. Last February he wrote a piece in his blog. The title was, of course, How to Prepare When you Are Going Blind. Harley (he looks like a nice guy so I will refer to him by his first name) says preparation can give you a sense of control. He agreed with other people I have read in saying starting now to learn skills will make things much easier later.

Harley would approve of us all learning about our disease. He would also approve of how we are coming together for support. He talks about ADA and telling your employer about your sight loss.

There are lots of references and links on Harley’s page. One of them is entitled “What to Tell Your Employer When You Are Loosing Your Sight”. I have not read it yet but somehow I don’t think it says to call work in hysterics directly from the doctor’s office like I did!

Harley suggests habilitation/rehabilitation and independent living courses. He also talks about getting your house organized. All good ideas with links to how to posts. [Lin/Linda: if you’re curious, there’s a difference between habilitation & rehabilitation.]

What Harley does not talk about are transportation and finances. To me, these are huge! I believe trying to get services and benefits from the government can be one of the most convoluted and frustrating things you have ever done. It literally took a couple of months to line up transportation. I had straightened our financial house several years ago when I got an inheritance. If I hadn’t, the income loss could have been problematic. Looking into the basics of getting around and doing what you can to get – and keep – your finances in order is crucial. Start now. You will be glad you did.

Written September 3rd, 2017 Continue reading “Preparation: Start Now!”

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 0/5
Applies to topic
Avg: 0/5
Helpful to me
Avg: 0/5
Preparation: Start Now!
Total Avg Rating: 0.00 out of 5 with based on 0 rating(s)
Overall quality
Applies to topic
Helpful to me

Home Away From Home

We all want to be independent and live in our own homes as long as absolutely possible. Still, there may come a time that vision loss and other disabilities make it difficult for us to do that.

Many people are looking at alternative living arrangements to satisfy their needs. For example, my mother-in-law lives in a ‘continuing care community’. She has her own house but the facility takes care of all the outside maintenance and any interior repairs…right down to changing light bulbs if need be! The community has affordable van transportation and a community center where some meals and entertainment are offered. If there is an emergency, people from the facility are right there. They also maintain their own, small security force.

If my mother-in-law should require assisted living and/or a nursing home, they are right there on campus. She is guaranteed placement.

Of course, my mother-in-law does not have a vision loss – I am the ‘lucky’ one there! – but I would suspect many of the community residents do. Problem is, many if not most of the care communities have not caught on to the fact they actually have visually impaired residents! And if they do realize they have them, they don’t know what to do with them.

If you are interested in assisted living, what should you, as a visually impaired individual, look for in a facility? After all, we don’t intend to sit in bed all day. We want to be as independent as possible and the staff should help, right?! Right!

VisionAware to the rescue. They have a short article on Help for Seniors with Vision Loss: Tips for Assisted Living Staff Members. They also did a short webinar and have the transcript for that at the end of the page. While this article is meant as a tutorial for facility staff, you or your agents can use it when shopping for assisted living.

We have talked about many of these before in the context of making your home safer and more livable. It is important to control glare and use contrast. This includes contrast tape on all stairs. Bold fonts and contrast should be used on handouts and enlarged or tactile versions of games should be in the game room. Staff should understand how to function as a sighted guide. Hallways should be free of clutter. Low furniture and throw rugs likewise should be avoided.

When you go for your tour, staff should make an effort to talk to you about the layout of the facility. Descriptions should be just that: descriptive! If the dining area is 20 feet on the right, it is 20 feet on the right, not up here somewhere.

Then of course we come to a horrible blind joke from when I was a kid: how do you punishment Helen Keller? Rearrange the furniture! Meaning, if you are looking at a facility where they rearrange furniture and move things from their typical places on a whim, it may not be the place for you.

Hoping no one has to make such a move before they want to, but if assisted living becomes a necessity for you, try to make sure the place is attentive to your needs. After all, you are a VIP!

Written September 2nd, 2017 Continue reading “Home Away From Home”

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 0/5
Applies to topic
Avg: 0/5
Helpful to me
Avg: 0/5
Home Away From Home
Total Avg Rating: 0.00 out of 5 with based on 0 rating(s)
Overall quality
Applies to topic
Helpful to me

Drugs with Eye Side Effects

Every once in awhile I have a van ride during which I am really ‘white-knuckling’ it. Forgive me, but it is always one of the older drivers.

Those are the rides I really want to kick them out of the driver’s seat and take over myself. I believe I could do a better job!

The other week we went onto the berm on the right and crossed the double, yellow line at least once in a seven or eight mile trip. I was hoping not to get the same driver again but the next day, one guess who sat in the driveway. On this trip he started out by regaling me with a list of the near disasters he had had during the previous week. Dare I say this is NOT a way to instill confidence in your passengers?

He then went on to tell me he had discovered his medication was giving him double vision. The double yellow line was quadruple. Take your pick which one you want to stay to the right of!

The moral of the story for us could be stay away from impaired van drivers (although in truth we are often at their mercy) but right now I want to talk about drugs that affect your vision. There appears to be quite the list of medications that can really mess up your vision and some of them can actually damage your eyes.

I found a 2011 article in Review of Ophthalmology called Systemic Drugs with Ocular Side Effects. It may not be totally up to date but it seems to be a good general overview.

For example, Fosamax for osteoporosis can cause inflammation of the eye. Cyclosporine and Tacrolimus given for organ transplants can cause vision loss as a result of their effects on the sight center of the brain. Fortunately this is generally reversible. Then there is Minocycline, an acne drug, which can cause brain swelling and permanent vision loss.

So far safe? No osteoporosis or acne? How about rheumatoid arthritis? Plaquenil is a known retinal toxin with irreversible side effects. Fortunately, taken as prescribed you should have no problem but don’t overdose.

Topamax is for migraines and epilepsy. Topamax has been known to cause glaucoma.

How about pee problems? Anyone taking Flomax? There is a syndrome called floppy iris syndrome. It makes cataract surgery risks a lot higher.

Then, for you guys, there are the erectile dysfunction drugs. Viagra and Cialis both divert blood from the brain. There are all sorts of problems here. First of all there is blurred vision because this interferes with the neurotransmitters in the retina. Another problem is central serous retinopathy which is a collection of fluid in the macula.

Unfortunately the list goes on and includes blood pressure medication and over the counter herbals. There are many, many medications that you never thought would have any impact on your eyes but do.

The takeaway message for this page is tell your eye specialist everything you are taking, everything including over the counter medicines and herbal remedies. Some of your vision problems might be drug related.

written 8/29/2017 Continue reading “Drugs with Eye Side Effects”

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 0/5
Applies to topic
Avg: 0/5
Helpful to me
Avg: 0/5
Drugs with Eye Side Effects
Total Avg Rating: 0.00 out of 5 with based on 0 rating(s)
Overall quality
Applies to topic
Helpful to me