the bits on a weekend

 Just got back from taking mother-in-law to town and getting her groceries.  Going to make chicken noodle soup with a bit of onion powder simmered in it, and green tea with pineapple juice for Esme for lunch.  She came along to help us with the groceries but she has a runny nose again.  We've been working on catching up on her math for school - the class she failed last year, because she couldn't access the program that was 40% of her grade.  I did some chatting with her teacher last week and finally asked the right question, and got us access at home to the program.  She just kept saying 'have her bring the computer to me' and that wasn't working, one way or another.  Finally I asked if there was still an online portal to use like they did during Covid when they did online schooling - and she said oh yea, there is - and told me how to access it.  Now she can work slowly through these chapters for half-credit and we will be able to keep up with her current assignments much better because she says sometimes she can't do them in class with all the screaming and pushing and shoving that goes on with the other students.

 

Car is doing okay, what it should.  The little trick we have been using to get open the gas cap door has been working well.  

 

My joints along my left side are still taking turns with who wants to complain today.  I try not to complain general, but did post yesterday that 'nineteen hundred fifty eight' bones in my left hip were having a word with me.  That is what it feels like - there is a hitch between two places that shouldn't even be IN that joint, and nothing is quite working in the right place between them - like shifting a car and for some reason it keeps getting stuck in between, but it works, and you can't get it to shift to the right position - and you know it SHOULDn't work that way, but it is, and just what is it damaging doing that??  A lot like that.  Mark says my joints don't have sockets, they have 'orbits'.  That's not far off, either.  Most of it will work itself out if I just don't overstrain things, eat right, and keep exercising it/using it normally.  

 

It is so ironic that with hEDS letting it 'rest' doesn't help as much as people would think,   If something  is 'stuck' letting it stay in that position and not stretching it out is the wrong approach.  But, you also do have to make sure that in grinding it through the 'slightly wrong position' (called sublux actually) doesn't really mess up something.  The snappy muscle bits will snap back in place if 1.) your nutrition stays good and 2.) you use it properly and stretch/crack it properly throughout the day  and 3.) you don't get an ACTUAL injury in the meantime.  I didn't sleep too long in one position last night, either - rolling over every few hours, which helps a lot.  When I'm just really really tired and I sleep for four to six hours straight - things tend to drift more and then getting the bones where they should be can be an unwanted surprise first thing trying to get out of bed.

 

Still doing Japanese on three programs and two profiles now - although I'm only doing the bare minimum.  One of the new apps on my phone keeps yelling at me at random times and I had to explain that to Esme.  Ha.  Oh, yes, my phone just said that because I have only done one lesson today.  It wants attention?  Yes, it does.

 

Speaking of, yesterday I had gotten home from the postal route and our little blind goat, Melody, was crying outside.  She was saying BAA very loudly, because she could hear I was in the kitchen.  She wants fresh food from the bin, like a house cat, and she wants someone to pet her head and say 'what a pretty goat' while she eats inside (she has an inside and an outside bowl).  Also, much like a house cat.  So when she heard me she began baa-ing very loudly.  Mark was in his office, and I was in the kitchen - and we both, at the same moment, said 'BAA' back at her - in the exact same tone - and he came out of his office and looked at me.  We said 'BAA' the exact same way, we speak the same dialect of goat.  I asked him what he had MEANT when he said BAA, because that would explain if it was the same dialect.  He said 'in a minute', and I would have said 'yes, eventually' (which, in welsh, 'in a minute' means about that exactly).  So yes, we both speak 'goat' to the goat when she is crying and it IS the same dialect.  *ha* 

some bits - anti inflammation diet

 foods : have been doing this for a few years now, was discussing with someone about it, after discussing earlier in the week with family in another state but they are now back to thinking that hEDS is not what their pain is from and they 'no one has ever heard of it' again *sigh* but I've found some good results for myself and I like these foods anyway.  the family members really love sugar and sugary drinks, as well, and 'can't give them up' where I've been drinking mostly black coffee (sometimes a little milk) with a pinch of a tea that has licorice and other herbs in it for several years (for the respiratory benefit) and that in itself is odd to most people.

bell peppers

carrots 

summer and zucchini squash

green peas

green onions

regular onion

beet greens and kale, fresh from the garden or frozen from garden

cucumbers (ground up as a sauce with mayonnaise, served on top of starches, like rice or pizza) 

olive oil, good quality - avoid many other oils

balsamic and rice wine vinegar 

canned beans, lentils or chickpeas 

brown rice, prepared with rice wine vinegar

rice noodles 

white sesame seeds (added to cooked rice)

nori or wakame seaweed

canned mackerel, tuna or sardines

eggs (from our own chickens, high in omegas, dark orange yolks)

peanut butter

olives

bananas 

mayonnaise 

avocado

relish  

naval oranges 

cherries and blueberries (sparingly) 

canned fruits and pineapple juice

licorice tea in small quantities brewed in coffee (for respiratory)

whole milk only

real full-fat butter, only (no margarine or spreads) 

dark chocolate 

ginger, garlic, hot madras curry powder, lots of black pepper

celery seed (usually in lentils, pea soup or rice) 

daily supplement : methyl folate tablet with food at breakfast 

still do eat pizza, pasta, pork chop or pork stir fry, beef - all in moderation with the family at dinner, although I often will make one or more of my own foods and mix with and limit consumption because it is harder to digest some of what the rest of the family wants to eat.

avoiding corn grains and cornstarch

avoiding overeating of sugar

limiting amount of beef when the family has it, I just don't digest it as well, a little is good (especially with horseradish) but definitely have a limit I can feel

definitely no sucralose or artificial sweetener

I used to drink a lot of green tea, but for the past few years it has made me vomit - it might be the brand type changed something or something else changed with me.

this is how we do it

 

 

the spider plant I brought to work in September as a tiny clipping - it is growing well at work and I am remembering to keep it watered

My theory of 'triage' alarms - which I know just look 'insane' to anyone else -  where I keep myself in check for what I should be doing and when.

I have a few extra ones for clock-in time at post office on Saturday and Sunday as well, which are not shown.  Several of the ones above are designed to wake me up so I don't sleep all night in one position or without drinking some water - because both of those things are very bad for me.  

When you are hypermobile and really fall into sleep, things seem to 'migrate' joints wise and I have woken up before and realized that I was sleeping with an ankle or knee bent completely wrong and it didn't hurt at all until I tried to move it.  Waking up and turning over a lot during the night keeps things from overstretching or falling into 'sublux' and staying there too long (as long as I keep in 'near sleep' and don't like get up and bake a cake or play a video game for hours etc. (turning on screens generally isn't great)).

I begin to turn myself over back and forth and check elbows and shoulders and knees and ankles etc at 4:45 although I usually don't actually get all the way up until about 5:15.  Every time I sleep five or ten minutes on the snooze alarm and turn over something else goes CRACK/CLICK and eventually it centers back where it should be to function.  The one bad thing about having this routine is that the dogs and cats know it and actually will try to wake me up a minute or so before the alarm - which can make it hard as they want me to get up out of bed immediately and go let them in or out (or out, then in) and I do have to be careful especially on the stairs especially if that left ankle is the one being 'uncooperative'.

All of this operating an uncooperative skeleton also really tires me out and I do good by myself when I can and just fall asleep when it is possible, instead of waiting for when it is 'proper'.  So sometimes I might fall asleep before I complete some of the important tasks, or be too tired to remember to do them until I've slept a few hours.  And if I wake up at 1:45 and realize my phone isn't plugged in, or I didn't start the dryer, or don't remember where the keys are - that gives me that much more time to right that problem before it is 'crunch time' of actually getting to work on time.  And then, even then, I leave more than a half hour early beyond the time I think it will take to get to work, just in case.. or I plan to, but sometimes I still have that 5 more minutes that needs to be done, feed chickens, unfreeze water dishes, etc.. and that built in cushion helps a lot.

I worked all through last weekend at the post office, helping out with Amazon Sunday for the first time in weeks, and they want me to do that again this weekend.  We went out for our groceries and got Christmas dinner items tonight after I got home from the office job.  I haven't paid so much at the grocery store in years... although we did some stocking up.

Languages : mostly Japanese, a little Czech.  I am still a bit annoyed with the Czech voice app but if I can get a bit more 'brain' I might do some more on it.  I really like the Japanese reading/story app still. 

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.

eds update

It has been about six months since I sat down and thought about the EDS in detail - in writing.  It is still here - it will always be here.  BUT, I am not abusing my muscles and bones every day or even every other day anymore to the extent I had been.  And, it shows.  I am not covered in bruises - most of them I can remember exactly what I did now.  EDS makes your skin extremely easy to bruise, even a normal holding the door open with your shoulder while you swing in a box or groceries etc.  And I was seeing that at Lowe's especially around my feet and knees, using them as wedges and levers to pull and push things that I really shouldn't have been handling by myself anyway.

I've seen other improvements.  My hair and fingernails are growing.  Fingernails are also very easy to break, split and tear.  I still see that - I broke two on mailboxes yesterday but not to the quick and I wasn't already to the quick on five others etc.. I don't wake up as often in the middle of the night with pain in my hands from something I did during the day - if I do, I usually 'earned' it, like knitting for three hours straight while I watched NCIS.. but that is tolerable compared to before.  When I get a cut now it doesn't take four or five days of opening and reopening to get it to start to heal - that was especially bad on my hands as a cut on a box at work would turn red and infected and be open for days despite peroxide, antibiotic ointment and bandages - it just kept getting pulled back open before it had time to seal up, and things would get into it and make it infected and that would further extend the healing time. 

My shoulders and knees and foot still crack and crick all over the place but I am not fighting the fracture in my foot every morning just to walk down the stairs and then walking on it for six or seven hours on a concrete floor.  My knee is normal size and despite some pain after I've been in and out of the car all day it has not swollen or needed the brace.  I don't feel every single little fracture and strain piled on top of each other day after day.  In short, there is time to heal in between everything.  Taking care of the infected teeth really have helped my immune system, as well.  I have one left but it has not bothered me much, and with the bleeding after each one I'm going to wait a little bit to do it.

After the route last night I was definitely ready to come home and rest and sleep - muscle aches from being in a car for eight hours etc - but it was a different kind of exhausted and I knew I wouldn't wake up in the middle of the night being hit by the load of pain the day had saved up for me ten or twelve hours after the impacts.  Not everyone with EDS has that specific - but I've read enough that it really hit home - and made me feel like something I had for most of my life suddenly made sense - not an alien, it happens to others, too.  I just hope we can organize what I am doing over the next year that I can make enough to support us while still not tearing my body apart.  That is the goal. 

bit

There is a lie I tell myself about pain because it was told to me when I was young.  I was told that whatever pain I was feeling, it was not more than anyone else around me, there was no way it could be, because I was too young to feel joint or bone pain and it would get worse when I was truly old.  I found out that it was a lie when I was about seventeen and fractured my wrist.  It hurt, but I was not screaming.  It hurt like something was wrong, and since the tae kwon do instructor saw the injury, he had called my parents to bring me to the emergency room.

When I got there, they took x-rays.  Then the nurse looked me over and she had a weird look on her face.  She asked me how much it hurt.  I said something was wrong that they should check it out, but that if I held it, it was probably okay.  She grabbed my wrist and banged it on the table and I yelped, and then continued my normal tense-grit-teeth after that.  She went and got the doctor and they explained my arm was fractured and would need a brace for three weeks at least.  Not only that, but there was evidence that my wrist bad been badly fractured before, and not treated.  I couldn't recall any 'serious' time except when I jumped out of a treehouse when I was eight, after having been left there by my cousin and siblings and Mom was having a freak out because I would not answer her yells.

I don't remember ever anything more than 'don't hurt yourself, stop crying, of course it hurts you jumped out of the treehouse'.. and holding my wrist the same way I do often to make it feel better.  So the lie is that I can feel more pain than others and still look the same as they do, mostly act the same as they do, and unless things are actually falling off or septic, I very well might be nursing a broken bone or holding a cut shut with medical tape and it would be very hard for anyone to tell at all unless they know exactly what to look for, or bang my arm on the table.

But when I actually do get to the point where something hurts very badly, like a tooth or a joint out of place.. I still find myself repeating the pain lie to get through it.  Other people feel this way all the time - it will go away - this is normal pain.  But the part my doctors and dentists don't seem to understand is that the pain sometimes does go away - temporarily.. through a pressure point? or nerve deadening or some mental trick... I can function.  That confuses all of my descriptions of pain, because honestly it is hard to judge what is going on even from my own point of view.

I had someone notice yesterday I was using a pressure point unconsciously to stop my wrist from hurting after a hard strain.  I knew what she was talking about but was not aware I was doing anything but 'holding the hurt' as I do.. but yes, that is a key pressure point for pain for the arm and shoulder and I was holding it down to make it feel better.  I can't even properly metabolize most pain medications - so they aren't going to help..  it is lucky to have sometimes found something 'zen' or Jedi that does work.  I sometimes press on my jaw or neck on one side when the teeth are hurting, and that is another pressure point, right there.  So it isn't all bad, but it does lead to some bad things like living with tooth abcesses etc which could turn out to be something much worse untreated than a fractured wrist.

the amazing

I admit sometimes my brain is still ruminating on the days just before I had 'enough' and said I was done with (L)... it is in my nature to wonder what I could have done differently and 'saved' it all.. but then I flip the switch over and say 'well, what amazing has happened since then?'

I am helping fewer people even more by doing full jobs and helping as many of the pieces fall into place as I can.  I can offer them more solutions and take a stronger stance in helping them get something that will be good for them.

I am learning how MUCH tile is out there (without having to pick up hundreds of pounds of it daily) and forming a catalog in my 'mental warehouse' of all that is available, possible, etc.  I'm learning how to lay it, what materials are needed.. all while talking to many professionals about their methods and what they need to do the job.

Socially - oh boy... I am still an introvert.  But, I'm an introvert who will stretch out to accomplish things and make connections so I can help people.  I've done so much more of this that I have to stop sometimes and take a deep breath and say 'you talked to a LOT of people today, but each one needed something you could give or had something to teach you etc.. it's give and receive, connect and help.'  It's a zen thing.  And that helps me center back and say okay, what next.

I was told that was a lot like my dad, too - he was quiet and in the corner until someone needed something he could do or something he knew, or he needed to talk to people to find out what he needed to help someone.  He was an overthinker, an overplanner, but that helped him in many situations because then he could conquer the problem no one else had thought about.  He was authentic, and didn't make promises on things that he didn't have enough information about until he had went and did the footwork.. and I hope I can keep those lessons in my heart as I continue.

DENTISTRY oh fun

I went to the dentist on Tuesday and they took out another exposed-nerve tooth, and instantly, that side does not hurt now even half as much as the other side, which also needs care.  It's like I was walking around with a knife stuck in there all the time and now there is only one in the other side.  I still have to watch it for infection, but the constant nerve jab is gone.

I've also finally been able to start taking care of my teeth (another joyful side effect of EDS, loose connective tissue in the gums, increased chances of infection, teeth are easily broken and jaw-clenching TMJ is usually present putting stress on loose teeth = wonderful dental issues!)  - although slowly.  After being told that 'it sucks to be me' and having to fight and beg for a dentist appointment, after being told I was going to need serious surgery and other work because 'I hadn't been in often enough for maintenance'... that was really confidence-bashing and added to my anxiety.

Then add the several people who see me go through high fevers and visibly swollen jaw who tell me I'm not realizing how quickly that can turn into a blood or brain infection and how can I possibly not go take care of this right now etc... balanced on the hand of 'if you're gone more than 6 times a year you can be written up and then fired'... I was in such a rock and a hard place but it was only my own health on the line - and for some reason, I let that go so far it almost did kill me.  But... I'm trying to do better on that now, because I need to be here to help my family, and I can't take risks like that for some company that doesn't value me properly.  I can do my teeth a little bit by little bit now, and make and keep an appointment without having to grovel to someone for it.. and take control of my health. 

POSTURE

I have noticed myself sitting 'the bad ways' again and again and am consciously reminding myself - by writing this here! - to stop it!  Do not sit with your ankle bones entirely on the floor.  Do not sit on the edge of the chair with your feet inside the barstool rails and your knees pointed down while you read (although that is comfortable, until it isn't.. )   And the hardest one - don't sit with your entire body askew and your head on your hand with your ribcage out of whack, because it is going to come back and bite.  Sit straight, feet on the floor, knees supported by desk if possible or locked together.  Because knees and hips will thank you for it later... or the opposite, your choice.