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Author Topic: Sissy stuff to keep warm with during the "VORTEX"?  (Read 24275 times)

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Offline marybethsanford

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Re: Sissy stuff to keep warm with during the "VORTEX"?
« Reply #320 on: January 13, 2018, 07:48:55 AM »
Just no way around the ugly parts.  I've got a twenty foot hose that gets me to most places and a M6 bottle with a 7 foot hose that gives pulsed air for the short trip.  VA covers the concentrator and bottles plus hoses.  Medicare has the same plan.  Are you Medicare?  Or some sort of medical?  Our place has a drop box with a key that goes in the mail box.  Works pretty well.  Damn.  Wish you well.

Hugs
Mary Beth


Can you get PDF files someway?  I have a ton of stuff from the rehab I could send you.


Offline Betty

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Re: Sissy stuff to keep warm with during the "VORTEX"?
« Reply #321 on: January 13, 2018, 05:48:58 PM »
25 foot hose, attachments/couplers, along with the the O2 storage bags/pillows arrived at my sister's house. She's hoping she can make it into town to drop them off by next weekend.

I probably read most material on COPD, lungs, & related topics over the years. Been researching this stuff since my mom had COPD over 25 years ago, & it eventually killed her. I watched her get worse every month & year looking for answers. I didn't realize that catching the worst flu of my life would kill me twice, & do serious permanent damage to my lungs, causing my the same problems.

So by the time I got it, I already had a head start on learning about it.

I had some health insurance for a while, when it ran out, I cleaned out my bank, sold a lot of my stuff, & went into debt up to my eyeballs (still paying on that) just to get treatments, care, & stay alive for a few more years.

Back in those days, the medical community didn't expect me to survive more than about 2-3 more years... which meant according to them, I'd be dead around 2016 or 2017.

But the money ran out, nothing left to sell, out of work, & couldn't borrow any more. So I had to self-treat myself on a barebones budget using whatever I could scrounge up or put together. A lot of personal research went into what people in other countries, & poor people in poor countries are doing to deal with COPD.

It's remarkable the enormous amount of stuff that is addressed by doctors & instructed to COPD patients in other countries, that doesn't even get mentioned to American patients, or discussed in American hospitals.

I literally read thousands of pages of medical/scientific journals, research papers, medical trials, & theories. I even read up an a lot of the related chemistry, & medical chemistry. I started maintaining daily logs & graphs of my condition. I was carefully examining data about days I would breathe a little better & days it was worse to find what caused the difference.

It got even more complicated as I had to study atmospheric conditions as a contributing factor such as atmospheric air pressure that day or hour, ozone levels, indoor/outdoor pollution, humidity, & temperature.

There is no cure for COPD. It's a progressive disease too. Once you get it, it continues to get worse. This is because as we age, our lungs do wear, tear, & get worse, so slowly loose more of their capacity to absorb O2 from the air. Environmental factors also cause the lungs to permanently lose more of the capacity to function, like pollution, smoking, etc.

In a normal healthy person, as we age & our lungs wear, we can still loose some lung capacity & live a normal life with no COPD symptoms. But if you have COPD so your lung capacity is already impaired, this normal slow loss of lung capacity over time or as we age can increase our misery, or become life threatening. Not only that, many of the treatments & meds used to make our breathing temporarily better or our life a little better for the short term, may actually decrease lung capacity faster over the long term, over the course of several years. They may even cause cancer after heavy, long-term extended use.

One of my brother's got COPD around the same time I did... due to smoking! He was doing much better with treatments than I was without when my insurance, money, & loans ran out. But just a couple years later I was doing better than he was with no professional medical help or meds (thanks to my research, & budget "treatments"). A couple years later he was in & out of the hospital for cancer treatments & every 4-6 months having bits of his lungs removed because of cancer.

Meanwhile doing it my way, on a budget that most people would starve to death under, I was able to stabilize my COPD for 3 years, & even slightly improve my condition. Most people spend more on food in a month than I pay in rent. Most people spend more on their lunch in a day that I pay for a week's worth of food.

Before the insurance, & money ran out, with medical care, it was assumed I'd probably die sometime by 2016 or 2017. Without professional medical care, I'm still here in 2018! So the financial disaster caused by me losing jobs, insurance, & money due to my COPD may have actually saved my life & stabilized or improved my COPD.

But all good things come to an end. My condition had gotten significantly worse over the summer, & continues to do so. But with an O2 machine that I personally hand-selected for my needs, a new air filter machine (had one wear out in spring), new home treatments, & going back to my routines & diets that worked in the past, hopefully I'll be stabilizing & improving my condition again.

Already during the past week, I've been feeling a significant improvement. And not by being on O2 all the time either. When the new O2 machine arrived I needed it a lot through the whole day & night for almost a week.

This week, when I wake up, I use the O2 machine for about 5 minutes. When I first wake up & in the mornings is usually when my breathing is the worst. Then when I get up to walk around, I'll use the machine for a couple minutes first. When I get back, I may use the O2 for a few minutes more if I'm gasping for air, but not if I'm just breathing heavy. Yesterday I used the O2 the most in the morning, but hardly used it at all the rest of the day... but I didn't try to do a lot of heavy projects or chores yesterday either.

Unless I catch another killer flu or something, it looks like you're all stuck with me for another year.

A couple days ago I took on the project of changing, re-arranging, & re-wiring my antennas. I don't get cable TV. So anything I don't get from my slow bare-bones DSL connection, I get through antennas. Not just for TV though. I rescued & rebuilt my old VHF, UHF, & Shortwave communications receivers after the fire. But it's not just communications type stuff. I can probably pick up AM radio stations 3 times further away clearer than most people. On a really good night, I even can pick some AM radio stations from Western Europe. All FM stations from Toronto & most of southern Ontario come it crystal clear too.

On a good day I even get FM stations from Ohio & Pennsylvania. All sorts of talk shows, science, paranormal, drama, stories, old time radio, & any kind or rare music (most not available locally). On shortwave, I get stations from all over the world, & ham radio chat. I can even pick up some weather & other data from satellites & aircraft. On my TV, I can pick up 4 Toronto TV stations from an indoor antenna near a window. I get over 40 TV stations from the antenna on a good day, & over 30 on a bad day -- no cable TV. Some of them are religious or shopping channels, but there's still a lot to choose from, for free!

Anywho, during the antenna projects a few days ago I had to constantly stop, & get O2 to catch my breath. But the fact is, it took me 1 evening to get the entire job done. Just a few weeks ago it may have taken me a week of more to get the same thing done. And at no point was I desperately gasping for air feeling like I was suffocating or gonna die either. If my breathing was that bad, I wouldn't even consider the project. Indeed, the project was way long overdue, because I couldn't see myself doing it without it taking forever. They put a new metal roof & metal siding on my building last year. All my antennas are indoors, & it seriously phucked up my reception. I was still picking stuff up but nowhere near what I used to. All my antennas are crammed near my few small windows now, but reception is good again.


Offline Betty

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Re: Sissy stuff to keep warm with during the "VORTEX"?
« Reply #322 on: March 15, 2018, 09:30:28 PM »
Air pressure outside has been extremely low for many days. That's like the low air pressure up on a mountain... like altitude sickness. Not good for COPD. Been breathing terribly again.

Odd weather. 0F (-17C) to 60F (16C) throughout most of January, 40F (5C) to 60F (16C) through most of February. But 20F (-6C) to 34F (1C) with snow most of March.

Offline Betty

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Re: Sissy stuff to keep warm with during the "VORTEX"?
« Reply #323 on: April 05, 2018, 08:25:57 AM »
A couple 60F (16C) days in January, & many 50F days in January-February, but 24F (-4.4C) today on April 5. WTF!

Scary 60mph (97kph) winds yesterday. Lights flickered a lot, but the power remained on. Internet kept cutting out. Bits of garbage, twigs, & roof shingles hit my windows, but none of them broke. New roof & siding here last year due to wind/storm damage. No bits of our building blew off yesterday.

Got a battery backup for my O2 machine that will run it for about 2 hours during an outage. I also now have 3, 42 liter O2 storage bags. That gives me about 230 liters of O2 available during a power outage. That'll last me about 15-30 hours depending on how bad a day I'm having. I've had rough time one day where I used up 100 liters in just 2 hours, & just a couple days ago had a rough afternoon where I used up 80 liters of O2 in an hour.

But since 9pm last night until 8am today I only used 5 liters. Was breathing rather well last night after the air pressure outside went up, & the humidity went down. There's also less air pollution outside, & in my 16-unit building at night. That's another reason I usually stay up all night these days. I breathe better then.

Someday I'd like to get 1 or 2 more battery backups for the O2 machine, but they're expensive, so they'll have to wait a while. I'd get a second O2 machine first as a backup, but they're 2 1/2 times more expensive than the battery backup (the machine draws 100 watts). Nobody services these smaller Chinese O2 machines here, & there's no telling how long they'll last. I'm probably the only one willing & able to fix it... if I can find the parts. I'd more likely have to retro-fit other parts for another machine that's close enough. And it may take weeks to get the parts shipped/delivered. So a spare machine would be a higher priority than more battery backup.

Budget O2 Machine

222wh Power Backup

444wh Power Backup

Online samantha1

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Re: Sissy stuff to keep warm with during the "VORTEX"?
« Reply #324 on: April 05, 2018, 10:05:57 AM »
hi Betty,those things are a  bit pricey. Talking of problems,I was recently diagnosed with ibs and since then ,i am having too check each food to see what it is made with,and there is no cure for ibs

Offline Betty

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Re: Sissy stuff to keep warm with during the "VORTEX"?
« Reply #325 on: April 06, 2018, 10:33:18 PM »
I didn't know what IBS was, I had to look that up. Couldn't antacid tablets or cutting down on dairy or oily foods help that? Maybe less fiber? I see there's rice & soy in cat food made for cats with runny poo.

Those machines are not so expensive if you figure the one half the size I should have if I ever got a prescription for one is $1500-$2500 & weighs 40 pounds, or the one I should have costs $2500-$4500 & weighs 60 pounds. Those things draw 300-600 watts too. Mine only weighs around 16.5 pounds, & uses 100 watts.

The lithium battery backup isn't that much of an expense either when compared to regular deep cycle lead-acid UPS backup power. A 200-222w/h lead acid backup would weigh 40-50 pounds, & it's capacity would shorten dramatically every time you run it down. In a year or so, you'd have to buy a new battery for almost the cost of the unit. Mine only weighs 5.5 pounds. I rent in an apartment in a mansion converted to 16 apartments. So there's no way to set up a gas generator here, & no place to store it or the fuel safely.

Although it's very difficult to carry anything with any weight with COPD without gasping for air, at least these low weight units, it is possible to move or carry them around, taking frequent breaks to catch my breath & get oxygen. Or I can even leave the building with them if I had to.

I didn't pay those prices for them anyway. I got my O2 machine about $140 cheaper from ebay from a reliable distributor of the company that makes them, than on Amazon. The power supply was on sale $30 cheaper, & I had an Amazon $20 off coupon for it too.

My second big full time temporary job was just completed. I got it because they were so happy with the first one I started back before Christmas. So I just got my last big paycheck from them.

I can hope they'll sign me up for more projects in the future. They're already talking about another big job around early summer, but hopefully something else may come up before then.

Things go a lot slower with COPD, even working at home with the O2 right here, so I still only made about $3-$4 an hour for the time it took me. But it was steady continuous work. I got those jobs for a set price. They don't care if because of a disability, it may take me longer or how many hours it takes me, as long as the job is done on time.

YouTube stopped advertising & paying small channels, so we no longer make ad revenue at our channels, so I probably won't put up anything on youtube anymore. So the ads we have running here, & at PSK/unclgadget make about $14 a month combined.

When my final paycheck for the second big job of the year came in. I was able to get a second O2 machine for the same price as the first one. I also found another sale for a second power supply, & another $20 coupon to save even more.

Sure it's an expense but I need my O2 even during a power outage. On a good day just sitting around, I may need no extra oxygen at all. But even on a good day I need some if I'm gonna move around & do something. Since before Christmas, I may pass out, get a heart attack, or die just trying to go poo on a good day now without extra oxygen. On a bad day, I definitely would not survive without extra oxygen.

That's why I had to take on a big job around Christmas knowing I was only going to make $3-$4 an hour on it, & borrow a shytload of money. I had to get an O2 machine or I was gonna die. Just to still live independently, I need it on a good day too. Being forced into a NY state funded & operated nursing home would be a living hell. It seems people are put there to hurry up & die as quickly as possible, not to treat or help them. Older & disabled people in prison get treated better.

There's no telling for sure how long this smaller Chinese O2 machine will last, but I did get one of the best small Chinese models. If it fails, I die. So I need the second one, because I can wait weeks for another, or for the parts to fix it if it fails. Nobody fixes those Chinese one. I'm probably the only one in the area willing & able to fix them... if I can find the parts. More likely, I'll have to find similar parts, & modify everything to make them fit & function.

So I need a second machine as backup. But also these machines don't put out a lot of oxygen. With 2 of them, & a T-adapter, I can get twice as much O2 when I need it, but if 1 fails, I still have some O2 from the other one.

And of course in a power failure, it better to have 2, 2 hour battery backups rather than just 1. I can fill 2 of my 42 liter O2 storage bags 2 1/2 times on a single charge off one of them. So that's 210 liters of O2 at 90% concentration from 2 battery backups. I have 3, 42 liter bags filled, that's another 126 liters of O2.

That means I have a total of 336 liters of 90% oxygen available during a power outage with 2 power supplies, & 3 full storage bags. During tests, I discovered I use 260 liters in 24 hours on a bad day, but not the worst days. So a single battery backup wasn't enough to have enough oxygen to last a day. During an outage there may be a storm or other emergencies. Air pressure is lower during storms making breathing worse. Air filters, air conditioners, & heat won't run, making breathing even more difficult. Will I have to breathe even heavier because a window just blew out?

Even in the best situations during an outage, I'd have to call for help or an ambulance by the time I got down to 80-100 liters of O2, because it may take some time for help to arrive... especially during a storm or other city-wide emergency.

I got my first retirement check last week. But it don't add up to enough. Since my COPD took a turn for the worse last summer, & another bad turn just before Christmas, suddenly my expenses just to stay alive multiplied.

It's not just the machines either. Things that I use to treat my COPD, that I know works for me, like beet juice, spinach powder, CoQ10, & special eating, has jacked up costs because that stuff is so damn expensive. Running an a 100 watt O2 machine 16-20 hours a day jacked up my electric bill too. My gas heating is one of those inefficient in-wall gas heaters right in the apartment (not in the basement). It depletes the oxygen in the apartment too much when I run it. So I try not to run it much & use electric heaters instead. So the past couple month's of electric bills are the highest they've ever been for this place.

This is why this colder weather in March & April is pissing me off so much. It's costing me a lot more more than air conditioning in the summer does. I can let the place get pretty cold by just layering on more clothes, & using more blankets at bedtime. But I still got to crank it up to wash, & I can't let it get too cold or I'll breath too hard trying to stay warm. So I usually won't let it get colder than the mid 50s F (13C) up here when I'm awake, & the mid 40s F (7C) at bedtime warm under lots of blankets.

Offline Angela M...

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Re: Sissy stuff to keep warm with during the "VORTEX"?
« Reply #326 on: April 06, 2018, 11:35:25 PM »
Hey Betty & Samantha1, I have just re-connected after 4 days without phone or Internet. Sub-contractor in the area decided to fix underground problems without first calling Bell re; underground cables etc. Yep you guessed it, tore out a major cable that has taken them hundreds of hours to fix. Five trucks with ten men digging trenches and climbing poles to reconnect service to at least one city block or more and they worked almost round the clock in a blizzard and freezing cold temps.
I have a niece with IBS and she controls it with certain drugs but mostly watching diet for too much fiber and food irritants. The only problem she has is she likes to party and too much alcohol.
Hi winds around here took out some tree branches in my yard and tore the covers off my snowblower and Hotub. It also loosened a post on my fence and brought down a neighbours fence and I read the winds also brought down some large business signs as well.

Offline Betty

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Re: Sissy stuff to keep warm with during the "VORTEX"?
« Reply #327 on: April 07, 2018, 03:10:47 AM »
Yeah, you're not too far across the border from me, so we pretty much get almost the same weather, except the "lake effect" varies a lot every few miles. It was like at noon Wednesday on the news was a live shot of it snowing with a couple inches of snow onthe ground, yet at my house just a couple miles away the ground was bare & not a single snowflake was falling.

I depend on my internet for everything to the outside world. Even the last 2 big jobs rely heavily on receiving & sending my work over the internet, & involves multimedia over the internet.

I still have my old Samsung smart phone I got for $45 about 7-8 years ago connected to T-mobile service for $3 a month, & a Alcatel smart phone I got about 2 years ago for $49 connected to Pure Talk for $10 a month. But the reason I get the services cheap is because I don't use them much except for texting, & rely on the internet for most communications.

I imagine if my internet would be out for more of a day, I'd temporarily upgrade to a data plan on the phone with t-moble & tether the internet connection to a computer, paying for just enough data to check my mail, online messages, & lock down Betty's to "members only" until my regular internet would be back up. They have data plans by the day, week, or month... no commitments. You can use up 150-250mb just visiting Facebook, some news sites, & many other popular sites just once. But to check my mail, messages, my sites, & Betties, I wouldn't use much data at all. They have 4gb of data per month for $45. I can visit Betty's & listen to one of our music mixes on our front page 800 times on a 4gb data limit. But I would only be able to visit Facebook 16-26 times on 4 gb of bandwidth/data limits. So if I had to rely on a phone data plan for internet, I'd probably never use Facebook, most news sites, & many popular overloaded site.

But I'd assume if my internet went out, it would never be more that a week anyway.

Fortunately I don't have a sensitive stomach or digestion. I used to when I was younger but I guess grew out of it. I'm lactose intolerant but as long as I don't have more than a half glass of milk every 3 or 4 hours, all I get is some minor gas. Or if it's mixed with food, it's not bad. For instance, I can have oatmeal, cold cereal, or mashed potatoes with milk in it with no problems unless I have a whole lot of it. I even put some milk in my gravies, stews, & soups.

What I have to watch, is that some stuff I eat & drink actually helps my breathing & health. There's a few things that will make it worse, but a lot of stuff that doesn't seem to do anything at all. So by the time I consume anything that helps, there's no room left for anything else. And the stuff that helps the most cost the most too much, so there's no budget left for anything else anyway.

Alcohol in moderate amounts once or twice a week is OK for me, & sometimes it even helps a little. I do get some cheap vodka up here once in a while, but no so cheap that it's poorly distilled & refined so it tastes bad or gives you a headache after just drinking an ounce or 2.

But I try to save it for when I really need it in a medicine I make or for a special time. I make a glass of cinnamon, sugar (brown sugar if I got it or honey instead when I had a lot more money), lemon juice (that cheap kind right from a bottle), & water in a 12oz glass, with 2oz of a good but cheap vodka. It gives me a temporary 2 hour breathing boost to get stuff done around the house when my breathing is extra terrible.

If my breathing has been terrible several days in a row, chores aren't getting done or are falling behind a vodka lemonade can get me through a couple hours. With 1 or 2 of those lemonades, I'm scrubbing the bathroom when before, I'd be out of breath just walking to the bathroom, scrub out the litter box, do the dishes, or make all my meals for the next day. But more isn't better. Any more than 1 or 2 glasses & it will make breathing worse. It will breathing will be worse the next day too. Once it's worse from overdoing it, having more won't help either. So I find it only works as an emergency breathing boost if I only use it once or twice a week, but never within 2 or 3 days of the last time.

I discovered that remedy when using it as a cold & flu remedy. It helped the cold symptoms a little but found I breathed a lot better. Lemon, cinnamon, brown sugar, & honey has been used for centuries to relieve cold & flu symptoms. All the best adult cold & flu syrups have alcohol in them.

One day while my COPD was real bad, I also had a real bad cold. I made that vodka lemonade remedy & curled up under the warm blankets to watch a movie & cuddle kitties. After the movie I had to go to the bathroom. While I was in there I started to clean the bathroom a little bit in there. One thing led to another, & it wasn't until I was better than halfway through thoroughly scrubbing the entire bathroom, that I noticed I wasn't breathing as badly as before, even though I still had the bad cold symptoms. But it didn't last. After a couple hours breathing got bad again, & more vodka lemonade only made it worse.

So heed the warning -- having a little bit once in a while might make you feel a little better for a short time. Having more or drinking it regularly will make things very worse.

Most doctors will agree that a glass or 2 of wine once in a while is good for most (but not all) people. But if you drink lots of it or often, it's very bad for you.

I haven't had any vodka in the house for a couple months. I got busy & preoccupied with other stuff to think about it. But I'm thinking of asking my sister to bring some when she comes to town in a few weeks.

I can't get out anywhere or travel. Just getting up & down stairs on a good day is a big project. The few friends & relatives still alive live too far away or have their own age-related problems. So I have to rely on when they're coming to town to pick stuff up for me, or deliveries for everything I need.


 

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