A Stuffed Black Dog

I am practicing my DBT skills on myself today. Today was the day I was supposed to get a new pool liner. Supposed to being the operative words.

I have spent several years trying to extend the life of the old liner with gorilla tape! That one was always a bit of a debacle. I picked an installer at random – and did not find out he had been driven out of business three times before that until I was having problems. (Note to self: research tradesmen!) When hurricane Ivan came along and pushed up the bottom of my pool, I was not able to get a lick of help from that guy. My pool bottom had lumps with wrinkles radiating in all directions. I was dreaming about GIANT spiders living in the pool!😱

But that is not why I am practicing my DBT. Today was supposed to be sunny and 80 °F. It is 56 and raining. My pool is drained and there will be no new liner for a week. Frustrated, but it is what it is. No controlling the weather.

Also, why ruin right now thinking about the swamp smells that might (face it, probably will) be coming off the pool until we get the new liner in? My fussing won’t make it smell like roses!

One of our readers/member of our Facebook group recently sent some comments about her first injection for wet AMD. When I read what she had written, I realized in some ways she had practiced DBT! Other ways she needed a little reminder to do so.

The reminder first: the days before her first injection our reader spent a lot of time worrying and fussing. After she had her shot she was sort of upset with herself because it had not been as bad as she had envisioned. She had wasted a lot of time being in a tizzy about it all!

Yep. My pool may not stink as much as I believe it will. The only way to find out is wait and see…and don’t waste time and energy worrying about it.

Reality dictated our reader had to have her shot. Otherwise there would be bigger problems. Reality says I am going to have a swamp in my backyard. No avoiding it. Might as well accept it will happen.

Both our reader and I know what caused our respective messes. She has ‘bad’ genes and my pool guy got a bum weather report. But even knowing what happened, the causes are not under our control. No sense fussing or saying it should not be happening. Better to practice ACCEPTS and get through it. [Lin/Linda: Click here for one of Sue’s pages on ACCEPTS.]

And you know what I loved? Our reader practiced a self-soothing skill through touch! She took a stuffed animal (a stuffed black dog) with her to help her through.

Another DBT skill she used (whether she knew it or not!) was effectiveness. That stuffed animal may not have been a ‘proper’ thing for a grown woman to have, but who cares? It did its job and helped our reader through. Remember effectiveness is all about doing what the situation calls for even if custom (or snobbery!) says it should not be done that way. [Lin/Linda: Click here for one of Sue’s pages on effectiveness.]

So, thanks to our reader for letting me use her comments in a teachable moment. As for me, no sense sitting around waiting for the pool to stink. I am off to Walmart. Continue reading “A Stuffed Black Dog”

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Hindsight is 20/20

Good evening! How are you all?

Lin has noticed I seem to have written soooo many pages they are overwhelming and confusing some people. She feels this is particularly true for some of the newbies who probably feel like they have walked in on the (boring and confusing) middle of a movie. [Lin/Linda: to be clear, those are Sue’s words! ::grin::]

Understood. Some of you are back in the shock and doom phrase and I am talking about getting newspapers on your phones and other trivial matters. Who wants to hear about that sort of thing while your world is unraveling?

In the interest of pointing you towards something that might actually be helpful, Lin is republishing some earlier pages for your attention and discussion. And I – always helpful – am going to add to the confusion by writing another page!😘

This page will have a catchy title thanks to Lin, but right now I am going to call it “What I know now that I wish I had known a year and a half ago”.

First, you are not going everything black and dark blind.

It is not good but neither is it quite that bad. You are losing central vision. Things will not be good for anywhere from about 15 to 60 degrees of arc. Since normal visual fields are 170 or so degrees of arc, you have the potential to lose about a third of your vision. Not anything to cheer about but better than 100%.

You may not be doomed to progress to end stage AMD.

About 15% of patients become ‘wet’. About 15% progress to geographic atrophy. That means you – starting out with drusen and a diagnosis of early AMD – have a 85% chance of dodging the proverbial bullet for end stage AMD. You may very well not get as bad as I am and a year and a half after my second eye went to hell, I am still functional. [Lin/Linda: a person can have both wet AMD and geographic atrophy in the same eye.  I don’t what that does to the %, if anything.]

You did not cause this.

Yes, AMD is caused but it was not caused by anything you did or did not do. The causes are in your genes. This is a heritable disease. There are dozens if not hundreds of genes that are being investigated to try to figure out how AMD is created. It appears AMD may just be the result of a genetic ‘perfect storm’ and there is no one to blame.

There may come a time you are seeing things.

I saw some odd stuff when my brain was working overtime to assign meaning to the faulty images my eyes were sending it. You are not psychotic (I hope you are not psychotic). This is Charles Bonnet Syndrome. When your brain gives up trying to assign meaning to false signals you will stop seeing weird ‘stuff’. In the meantime, enjoy the fantasy.

Point number last: There is an amazing amount of hope for treatment and eventually a cure for AMD.

Research is going on everyday. New discoveries are announced with regularity. The medical community is hot on the trail of something that will arrest the progression and may even reverse this disease. All we have to do is hold on.

OK. Those were my biggie when I first lost my second eye. What are you worried about? Please share and we can discuss it. Continue reading “Hindsight is 20/20”

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Always Learning More and More

Moving right along with the article I am reading (in Webvision’s Age-Related Macular Degeneration), I am finding a lot of new vocabulary and abbreviations. Have you heard of PEDs, for example? PEDs are not nylon footies. They are pigment epithelial detachments. They happen when a bunch of drusen join forces and push up the RPE layer of your eye. Since the RPEs are under the retina and need to be in contact with Bruch’s membrane in order to take care of the photoreceptors, having them jacked up is not a good thing.

There is more and more information suggesting Bruch’s membrane is not totally blameless in this whole debacle. I am not going to pretend to understand it but there is evidence structural and biochemical differences in Bruch’s membrane occur in those with AMD but not in people who do not have the disorder. It may not be all the fault of the RPEs.

Recently I have been seeing the terms classic, predominantly classic and occult to describe different forms of wet AMD. They are mentioned in the article I am reading but not well defined.

According to the American Macular Degeneration Foundation the terms classic, predominantly classic and occult describe the choroidal neovascularization (read “formation of new blood vessels in an inner layer of your eyeball”) that happens in wet AMD. Classic choroidal neovasculazation is characterized by well-defined boundaries. Average visual acuity is between 20/ 250 and 20/400.

Occult CNV sounds like it should be scary but it is actually the more benign. Occult lesions are not as well-defined as classic ones. They tend to leak less and average visual acuity is between 20/80 and 20/200. If given a choice, I would take this one!

Predominantly classic is, as it sounds, a mixed type. The other designation for this type is minimal classic.

According to Joachim Wachtin in Classical Choroid Neovascularization CNVs can also be classified by where they can be found in relation to the fovea. Some of them are directly under the fovea and are called subfoveal. Those that are extremely close to the fovea are called juxtafoveal and the ones that are farther away are called extrafoveal.

Like I said, lots of new vocabulary coming our way! But I do believe that, when in a strange land, you should always learn a few basic phrases. These are some basic phrases in the land of wet AMD.

My article takes a serious detour into science babble and I truly don’t understand much. Glaze over time! That means I am going to stop sharing info from it.

Hope these scraps of information fit into your ‘puzzle’ somehow. One of these days we will have gathered enough pieces of knowledge to actually figure out what the picture is!

In the meantime, keep on learning. In the famous words of Schoolhouse Rock, “….because knowledge is power!” Gather knowledge. Be powerful. Continue reading “Always Learning More and More”

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Always Learning More

Hey, there! I think I have found a good article on macular degeneration, our favorite but somewhat distasteful topic. The article is in Webvision and is entitled Age-Related Macular Degeneration. Another catchy title. The main author is Hageman.

Did you know the name up until around 1990 was ‘senile macular degeneration’? Makes it sound like our eyes have lost some of their mental faculties. Glad that was changed!

Also discovered the fovea is the center of the macula. It contains the highest concentration of cone photoreceptors and is the only region of the retina that can attain 20/20 vision.

I think when my optometrist said I had such an abrupt vision loss because the deterioration had reached the center of my macula she was talking about the loss of my fovea. That means 20/20 vision is no longer possible for me. Even if I use prisms or eventually get that eye max mono thingee, things will not be ‘perfect’. [Lin/Linda: she means the EyeMax Mono lens implant.]

This article says macular vision is 10% of vision! Estimates of degrees of arc of potential loss seem to be getting better, but don’t get too excited. Remember we are talking my interpretation of things I read. It is guess-work. I know nothing.

Although I used to think hard drusen sound more ominous than soft ones, it is actually the other way around. Hard drusen are smaller and soft ones are larger. If they are looking in your eyes and mention soft drusen, you have more of a problem than if they see hard drusen.

I thought that all dry AMD would progress to GA (geographic atrophy) if the person lived that long. This article says only 10 to 15% of dry AMD patients progress rapidly enough to ‘achieve’ GA. Interesting.

That means my visual state is something many of you will not have to experience. That is a good thing! And FYI? I am functional so you can remain functional as well.

For you ‘wet’ folks, the article once again cautions you to stay on top of things and get your shots. Left to its own devices wet AMD progresses to a cicatrical stage. Cicatrix is a fancy word related to scars and scarring. Disciform scars occur when fibrous tissues develop in Bruch’s membrane between the RPEs and the retina. Scarring is, needless to say, not good and can result in severe vision loss. Bottom line for this paragraph is: do not allow bleeds to happen to you!

Closing in on my 500 words and I still have pages to read in this article. I think I will close this page, read some more and start another.

And FYI, I emailed by doctor. And – while he also believes the increased density/opacity of my blind spot is related to expected disease progression – I am going in for a vision screen in two days. Perceivable changes in your vision? I expect you to call, too. Check it out. Continue reading “Always Learning More”

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Good Thought, Bad Thought

Back again in the same day. You do know I am ridiculously hard to get rid of; don’t you?😀

This is the page I was going to write before my ZoomText, inelegantly put, took a dump. Now I will write it.

I went to see my local retinologist Monday. Great guy. He is good. His kids are good. I feel I see him enough I get to inquire about the boys.

I also feel like I am becoming ‘friends’ with my tomography tech. We chat. I asked about the enhanced depth tomography. He had the capability with his machine and since it would not cost any extra, he ran it on me. The pictures were pretty. I saw my optic nerve and my ‘divot’, geographic atrophy, but did not have the training to see much else.

The tomography tech pointed out two veins in my choroid. They were old veins, not new ones. It is sort of bizarre to realize how relatively deep the hole is in my macula, but that is a part of the definition of geographic atrophy; the damage is choroid deep.

Neither my local retinologist nor I believe I will convert to wet AMD. He has put me back to twice yearly for my check-ups. It was my understanding, and my retinologist confirmed, that wet developed as an adaptation (sort of) to the dry form of AMD.

The way I understand it, when the RPEs and the photoreceptors are not getting enough oxygen and nutrients they send out the SOS . They need supplies! They are starving! The body responds by establishing new supply lines in the form of new blood vessels. The only problem is these vessels are inferior. They break and the bleed. Problem not solved. The fix does not work so well.

I got the impression I am back to twice yearly visits – and he does not think I am a candidate for wet AMD – because I don’t have a lot of macula left. Now he did not say that. It was an impression but I am usually pretty good at those. I don’t think there is much for my body to try to save anymore.

Good thought and bad thought. Or actually bad thought and good thought. Bad thought that I may have reached this level so quickly. Good thought: could the slide be over? Will I soon stop losing vision?

Now, cheating my sweet little patootie off and using eccentric viewing and guess work to the max, my vision tests as 20/50. Am I really 20/50? No, but I cheat well. And they know I cheat, by the way. I tell them every time.

If I can cheat and test at 20/50, that means I have decent functional vision. I can do a lot with that. Not so bad.

So why all the horror pictures of visual fields that are 90% bleach white with decent vision around the edge? If this is a ‘central vision loss’ problem, what is the definition of central vision?

No clue, but Lin and I are on the hunt. Let ya know. Continue reading “Good Thought, Bad Thought”

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I Am Not a Doctor

Commentary: Lin just sent me a post from someone in the Facebook group. She asked for my reactions. The person is claiming he completely reversed neovascular (wet) AMD with nutritional treatments. Here goes.

First the disclaimer. I am not a doctor. I am not a nutritionist. I am a woman with dry AMD who has tried to educate herself about her disorder. Therefore I do not, by any stretch of the imagination, have all of the answers. End of disclaimer.

That said, let me congratulate him on his greatly improved vision! I am glad he are doing well.

I know some of what he says is true. In general the diets of those in the developed world are atrocious. We should be eating many more fruits and vegetables, especially our leafy greens, than we do. The reason taking the AREDS/AREDS2 supplement works to slow the progression of the disease is probably our poor diets. If we ate well, the supplements would not be so needed. [Lin/Linda: I have to mention that there is some risk taking the AREDS or AREDS2 with 80mg zinc.  It can cause problems in the genitourinary tract but there is evidence that for people with certain genes, that high dose of zinc can cause their AMD to progress faster. Since not everyone has easy access to the genetic tests, there are supplements with no zinc or less zinc.  Check out this post for more information.]

Angiogenesis is the growth of new blood vessels. This is a hallmark of wet AMD. There is some evidence angiogenesis is part of the healing process and may be triggered by inflammation (Reiner O. Schlingemann in Role of Growth Factors and the Wound Healing Response in Age-Related Macular Degeneration). There is also evidence that retinal hypoxia (in English? Your retina is gasping for oxygen) is a trigger for angiogenesis and neovascular (wet) AMD. (Citation same guy. It is so nice not to have to follow APA format😁 [Lin/Linda: APA is the American Psychological Association and when you write something for them, you need to follow a very strict format for references to articles.]

That said, theoretically it is possible he hit upon a combination of nutrients that would reduce inflammation and increase oxygenation to his retina, thus somehow stopping the angiogenesis. Did this happen? No clue. I am just sort of a slightly-too-smart-for-my-own-good, visually impaired lady. (Gets me in a lot of trouble.) Is it possible? Sure. “There are more things in heaven and earth, Horatio, than are dreamt of in your philosophies.” (That is the bard, of course).

Now, it would be my supposition – again totally unfounded – he was not in advanced AMD and had not experienced much if any photoreceptor death i.e. geographic atrophy. Unfortunately from what I have been told dead is dead with those. They would not have come back.

That is pretty much my take on it. Again when it comes down to it, I know nothing but I have a helluva lot of opinions. Don’t believe me. Offer your opinions. What do you folks think? Continue reading “I Am Not a Doctor”

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