some things in general

I did a whole lot of crocheting and knitting trying out this toy pattern I saw a picture of - winging the entire thing, unhappy with some of it, trying other things to push it along etc.  I learn a lot when I do these, and the knitted ones usually turn out great but the knitting takes so long and is so small and hard on my fingers sometimes.  Six of one, half a dozen of the other - since I'm not on duty at the post office I thought I'd work on it yesterday and hope I didn't strain my hand for whatever I do on Wednesday.

 

Talking yesterday I know there was a lot that I wanted to say but couldn't find the right frame of reference.  It's taken me thirty years to realize a lot of the methods I now operate by - and a lot of those were just trial and error.  I just have to make my ADHD tendencies work for me, because this is me, I'm the one getting things done in here, so knowing how it gets done best for me is the way to go.  I'm sure a lot of my methods looks painful to others, and trying to put it out in speech is really hard for me because you can't edit and insert and delete like you can in text without becoming a Mime with a whiteboard /ha - but also - in life you can get all the instructions and all the tools put on your workbench but you have to figure out yourself minute-to-minute how to get things done with them.  I think my dad said it as 'wherever you go, there you are, work with that'... I'm still working on it... and I get things done, eventually.

Then, at forty, I found out more about dysautonomia and Ehlers-Danlos, which run in my father's family and affects individuals differently.  I knew about the dysautonomia from being diagnosed with POTS at nineteen, but learning about the entire 'umbrella' of EDS disorders and genetic links was like getting to see the actual operating manual for something you only learned by hunt and peck.  And even with all I've learned so far, I still haven't completely processed that because life doesn't slow down often - and then you have to decide whether to rest or catch up on things you've set aside for the moment - to decide whether to use up your energy while you have it, and what on etc etc.. or to reserve it and hope you still have some when you need it next.

What I've learned in general about hEDS (hypermobile Ehlers Dalos syndrome, "EDS type 3"):

I can give no advice at all on healthy eating to anyone really - but diet has been about the only thing that can be managed since hEDS has no 'cure' and is genetic, and just naturally gets worse with aging, which is why more people with it start to realize and learn more about it in their thirties and forties, even though they've had it all their lives and sort of just 'got by' until they began to age.  First off every body is so different you just have to find your own middle ground over time, and my body is even worse because hEDS is just so hard to understand in the first place.  The body is always under constant repair, and as you age, your body repairs slower, so in hEDS the damage starts to build up and snowball if you aren't taking care of it.  hEDS is a problem at the base level of how the body makes collagen, slightly too stretchy and fragile, and the body replaces these structures all the time, but slower as you age.  'Dietary collagen' doesn't help because it does not replace the collagen the body is always making in every cell of your skin, muscles, blood vessels, even eyes and gums and so forth, that is just slightly wrong here and there, a little like swiss cheese.  So things break down and strain and 'degrade' in weird and unexpected ways, sometimes heal, but not always quickly or correctly without help, highly confusing unless you at least know why.  A lot of the dietary things that help are advice bodybuilders would follow - even though it isn't expending the 'exceptional' effort of perhaps a bodybuilder, the muscles are constantly still needing that kind of fuel to rebuild themselves from what is just normal activity for most other people.  I'm still figuring out the very strange needs of this condition and I'm sure it doesn't really add up to healthy, but it's healthier than before I understood why everything was going haywire trying to follow the advice a 'normal healthy person' would thrive on.

So when I'm hungry - I follow my weird-food instincts because they're usually pretty correct, high 'good' fat to process the fat-soluble vitamins, high protein, lower carb, lower sugar, lots and lots of anti-inflammatory foods and spices.  Some of the stranger things I like, green chiles, hot peppers, bananas, cucumbers, avocado, olives, peanut butter, celery seed and seaweed etc.. are because they contain specific nutrients that my body needs and are hard to get elsewhere.  I'm craving avocado, not donut - but sometimes I crave tacos or Indian type recipes because of the spices and the antioxidants that come with those foods - black beans, coconut milk, butternut squash, egg yolks, hot curry etc...  And, combinations that other people would find odd sometimes taste really good to me - because I need all those things, and tastes are made up partially by our body's responses saying 'oh yes, more of that!'  I've tried methylfolate once, but should try it again.  I hate that it has to be ordered and I can't get it locally.  There are studies saying a lot of the dietary issues can be helped by adding that, because the lack of some enzymes in EDS gene carriers can cause problems processing folic acid, which is in nearly everything, and then that also causes trouble processing copper and other micronutrients, which are necessary for the muscle repair etc.. snowball effect, too much of what the body can't process, tying up some of the things it really needs to process, and inflammation.

Coffee causes other people to be overjittery and anxious and can't sleep - but again, I'm a case of opposites.  These are things I swear my body 'knew' before I really consciously did, but I often had a very hard time 'listening' to it over the magazine and health advice that gets constantly blared at us in society.   And I always have drank so much coffee at times, you'd think I should be a constant interdimensional blur, but it also has a key anti-inflammatory in it and keeps the vascular system's constriction vs. dilation function constantly exercised which helps combat the POTS dizziness and fainting problems I had so badly years ago.  The few times I tried to stop coffee 'for my health' resulted in inflammatory nightmare weeks that I was told was 'withdrawal' and I'd feel so much better if I just waited until I 'detoxed'.. no, nope, I wasn't 'just in caffeine withdrawal', I was in pain and angry, all my joints felt like I had been thrown from a horse and I was so tired and brain-fogged but couldn't sleep well, and I felt nauseous from drinking plain water that drinking the water was a constant effort where I drink down cups of coffee before I even realize it's empty and stare into the empty cup with little cat-whimpers before levering myself up to go get more. 

Although - I'm really glad my cousin finally tuned me into corn being an inflammatory for us, because that little bit of information to cut that out wherever possible really changed a lot.  Once I started watching where that was in my diet and trying to avoid it there was a huge change in all of my healing and muscle inflammation processes.  And there is corn meal and corn starch in so many things!  It's a lot easier to manage the inflammation that is still here when I'm not actively adding to it with something I didn't realize we were 'allergic' to.  Most of all, understanding the cyclical nature of constant repair and energy expenditure that is present in hEDS really helped me understand energy-fatigue cycle that comes with it, and the exercised 'in shape' vs the overuse 'injury' of the hypermobile muscles.  It also explains why doctors would always think I was 'fine' and then I would turn into a melting type mess and they were like 'how did it get so bad??' and then I'd get back into a repair cycle and it was like 'wow, you must be better' etc etc.. In general though, I 'run myself into the ground' less often now that I know better, although it still happens - and I remind myself to stop early at 'good enough for now' on some things sometimes to assess and not OVER-overuse things that will already be needing to rest and repair later.

 

finally reached the 1000 day streak on my PC account, which I've had since 2017  I was doing French and Chinese yesterday, got Super preview and will try to finish up some sections today in the French and maybe another language.

This week:

I am not on at the office, that I know of, this week - that's good and bad.  It's bad in that I'm not getting the hours, and that will catch up to us later, but it's good in that I had been working a lot and needed a little bit of a break.  The garden is in rough shape - but still producing tomatoes and a pepper here and there.  Something took advantage of my more infrequent visits and ate some of the cucumber plants on one side of the raised beds.  I tried to pull the fencing back up there - it must have been a deer reaching over the fence since there was such an obvious bite through three of them and bits of the plant was left down on the ground with the fence pushed down.

I didn't find the biryani spice I was looking for at the supermarket yesterday, although I got the juice.  What I ordered at the restaurant yesterday was three times what I normally would, when I go to the other place I only get one set of rolls and that is more than enough, but the recipes are entirely different, too.  But I was glad to be able to use the leftovers at home for dinner.  I used five-spice powder and additional black pepper, a finely chopped shishito pepper from the garden, frozen white onion, soy sauce and a handful of the fine egg noodles to add to the leftovers I took home and make a refried fried rice for dinner while Esme and Mark made a pizza.  My food was VERY spicy.  The olive oil I'm using is Bertolli Light Cooking Olive Oil? ( The price went up three dollars a bottle since the last one I bought, which was a shock. )  But I rarely just fry any food in oil - Mark says he has no idea what kind of cooking style it is - but I add a bit of oil to the pan, maybe a tablespoon, and then actually dilute that with about twice that amount of water - heat it up, add onions and peppers and/or other vegetables, and then when they are hot and sizzling, I'll add more water and soy sauce and powdered spices (and the noodles here), sometimes add the frozen greens from the garden in this step because they get really soggy if added in the earlier one, and get that boiling again, then add the rice which I cook up a half cup or a cup at a time and store in a glass container in the fridge.  

I did that sleep four hours and check on the sick chicken thing again, and now I've been up for three hours again.  Yesterday I fell back asleep for two hours later - and today I actually got about four more after I had been up for three.

Writing this is keeping myself from getting back into that crochet and straining that hand before I get a chance to have the effect of yesterday 'hit' and tell me what the muscles feel like today.  (often a ten to twelve hour turnaround on pain there)  I don't think the poor little chicken will make it, she seemed a bit more deflated yesterday even with drinking the bit of yolk I gave her and more antibiotic water and a warm wipe down instead of the soak that I thought might have been worse for her the other day - but mostly the left leg that was hurting her still looks fine but she isn't putting any weight on it at all now that I can see.

some of the lesser known signs of cataracts in younger people

 If I had known these were cataract symptoms - I would have pushed harder for them to diagnose and treat them.  But, it took me nearly two years of rapidly declining vision, among all of the other anxiety-causing and terrible upheavals in my life, for them to finally 'see' that problem.  And now, after all that time, I am reading my screen again without a magnifier - and with black text on white background.

The signs I missed (and they did, too)

Everything seems dark or dim - even when you have the lights on!  You seem to need to a lot more light for everything, and especially direct or 'sweet spot' light on what you are doing.  Going outside is amazing, things are sparkling beautiful colors, but as the months progress - it produces a 'London Fog' type effect that makes it very hard to see long distances.  

Anxiety - You have a definite sense something is wrong, but you probably ascribe it to other things.  You probably have been adapting to doing things differently, but your body knows something is up, even if you're ignoring it.

Small text was hard, and now is nearly impossible. Up until now, your closeup vision has been what is mostly affected, but you're getting older, right?  It should be 'natural' in your thirties or forties to need stronger and stronger glasses to see small text.  But, every three months or so your prescription isn't good enough, anymore.  You need magnifiers over your glasses or small magnifying glasses to see phone numbers, mail and magazines.  You didn't need these last year - and even bifocal glasses only help at some distances with 'most' type.  You may feel depressed, or incompetent, or both. Everything has gotten harder, paying bills, reading recipes, checking receipts, cleaning up and sometimes when you set paperwork down on the desk or table you have trouble finding it later without looking closely at every item.

Clear shapes in your vision:  The one that confused my ophthalmologist the most?    I was complaining of these 'clear overlays' like patterned glass that would show up in my vision.  Some people might call these artifacts - but they are not the typical type.  They were not 'floaters' or strands of white blood cells like most people describe.  These were bullseye patterns, small triangles, bumps and circles like pixels that would appear and then 'travel' with my gaze across my line of sight.  They would be there worse in some lights, and disappear in others.

Polarized or Fishing sunglasses help some : I would put on polarized glasses towards the worst part here and the London Fog would diminish a lot.  I couldn't see a person on the other side of the room before I put them on, if fluorescent lights were on overhead. The polarization stops certain wavelengths of light from getting to your eye, which cuts down on the interference overall. But, those clear overlay patterns were STILL there.   That was because they were caused by light reflecting wrong inside the eye, through and bouncing between the separated layers.

You want Dark Mode for everything, even in the daytime.  Dark mode on facebook and tablets and readers helps SO much - you can read small type in white on black background fine, but not the other way around. 

Night Driving is difficult or impossible:  Every car that drives by in the opposite lane fills your eyes up with the headlight glare, and it doesn't go away for several seconds.  You find yourself having to slow down for every oncoming car, and/or weaving off the road and missing turns.

Streaming Eyes : Your eyes seem dry a lot, but then at other times they stream for no reason.  

partial Double Vision : You may see 'double vision', partial double vision, or one and a half vision, especially when focusing at near distances but not far.

You keep getting a new prescription, but it only lasts a few months.  It gets worse and worse as the months progress

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I was diagnosed with posterior subcapsular cataracts (PSC) in January, after noticing changes for more than a year, and only getting new glasses which failed the solve the problems.  I was told they are VERY hard to see, and if they aren't thinking that is the problem, they might not look for them in the right places under full dilation.

They can also progress VERY fast.  At the beginning of the year it is just a magazine that is difficult but possible with a magnifying glass.  By the end of the year you can't see yourself in the mirror (but can still see the road to drive, but not read the street signs or exit signs!) or read your own handwriting or phone screen.

They are becoming much more common in younger people, but the medical profession has not yet started looking for them as routine in these age groups.

What Causes This?

They can be caused by diabetes, genetic conditions (like collagen disorders, yay me), any condition that causes excess inflammation or has trouble with healing, those that have been regularly prescribed steroids for lungs or other conditions, or the result of head, eye or face trauma.  They can also be caused by lots of UV exposure, stress or past alcohol abuse.  Put any of those together and it increases the risk.  It sounds like they're still sorting out what 'really' causes it, and how to identify it early - but a little knowledge to the public can only help.

The layers of the back of the lens get separated for some reason (you might not even register it as a real injury or think 'I'm fine' - because this takes months to years to develop the initial condition, and then it begins to grow & change exponentially after that like a nick in a windshield that one day begins to crack all the way across...), and the cataract forms as a 'bubble' in between these layers, in the back inside of the lens, where the problem can only be seen 'through the axial lens'.  

But - won't I know?   It's obvious, right?

It's invisible to the naked eye, and hard to find even under dilation by the eye doctor.  So, no, you probably won't know, and their job is to get you glasses - so that is what they will try. One of your first signs in the office will be that the little floating balloons or Aladdin swirling lights machine - the spectroscope - will try and fail to get your prescription.  Your ophthalmologist may or may not say anything at all about it, or may brush it off - 'that's weird, this never happens', 'you can't trust the machine, it's just there to get a basic reading', etc.  That machine works by bouncing light into your eye and measuring how fast and at what angles it comes back to measure the shape of your lens.  If your lens has bubbles or clouded areas in it that is not going to work as expected.

So, how does your Ophthalmologist recognize it early?

If you see these symptoms listed above, you need to tell them, or they'll just keep up with glasses until they can't match you up any more.  Enough warning signs, we hope they will look, but nowadays everybody is in a rush and they have to have enough reasons to look and check everything.  That is what finally alerted them that I had a 'real' problem.  The vision machine - spectroscope - could not read the worst eye.  The problem was already progressed quite a bit, but at that point they still hadn't identified it.  

They failed me on the vision machine with the floating balloons twice.  I failed the reading test in the chair as well.  Then - they gave me another dilation and looked hard and detailed at my eye, and found the problem after looking back and forth through the lens across my optic nerve and cornea for several minutes checking and rechecking.  This occurs on the inside back of the lens and can only be seen by looking at the 'axial' or side of the lens and realizing you are seeing the problem in the lens - like a spot on your glasses when you keep trying to wipe your computer screen.  

After seeing this finally, the eye doctor referred me to the specialty clinic, which also had to go through all the same things, including the spectroscope confusion.  But, the specialist doctor knew what he was looking for, any and all types of cataract.   As a note, there is a cataract in my OTHER eye, as well, but not as large, and they were still able to get prescription on that one.  

Why does cataract surgery fix it?

I was a bit pessimistic, after all this, that it wouldn't be entirely fixed.  I thought the overlays would still be there, because they were there even with the polarized glasses.   But they remove the entire lens, and replace it with an artificial one.  This problem is in the bottom inside of the lens- if it was a plastic cereal bowl and you placed it upside down on your counter, it would be a separation in the layers on one side near the countertop, flaking upwards.  They remove all of that - not just the top section of the lens, and put a new 'fake' lens in, that reflects light properly.

Will they come back?

Once upon a time, I've been told, they used biological lenses, donated from cadavers to replace the lens after cataract surgery.  These lenses were susceptible to the same stresses, fractures and cloudings as the original lens you were born with.  So yes, THEN they did come back.  Now, with artificial lenses, they should not come back.  But, you do have to protect your eye from UV much more with an artificial lens, to protect your retina from macular degeneration.  The retina is in the back of the eye, and with improper diet, dry eye or blocked eye drainage or other genetic conditions, it can be damaged even more by UV exposure after cataract surgery.  This is why most people after cataract surgery will continue to wear sunglasses outside whenever possible.

Will I still need glasses?

Maybe. But they won't be able to tell until a week to four weeks after your surgery, because the new lens has to settle and your focusing power (your eye bends the lens to see near or far) will be different for each person.  Once your eye has settled, any prescription you get should be the one you will have the rest of your life.

The outcome for me:

With the cataract gone from the left eye - I am reading with no glasses at all, and I only did the basic replacement because of insurance, not the fancy ones.  The ever-stronger prescription in my glasses was not because of 'age' only - as we often think of it - but because the specific cataract type disrupting the light reflecting in my lens.  Cataracts can come with age, but this type specifically can hit anyone of any age, if the conditions are correct.   

I've tried to hit as many of the keywords and search terms as I can in my text that I was looking for when I was going through this problem in the beginning.  Maybe, it will help someone.  If I could go back to the 'everything is dark - turn on the lights' stage and whisper into their ear - it might be a posterior subcapsular cataract.. I would.  I would definitely tell myself it wasn't that I was suffering from depression and anxiety - my dad had just died, I had quit a soul-sucking job .. all of that -- But I wish I had known it was possible that it was a physical problem with my eye, and it needed to be taken care of.