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MooseMom
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« on: March 18, 2020, 12:51:32 PM »

It's a scary time for all of us, for our friends, and for our families.

So, how are you all doing?  Tell us about how you're coping, what you're doing to keep your mind intact, how you're spending your time if you are self-isolating, and share some tips that may help some of us through the anxiety.

And what about your community?  Mine seems to be filled with local shops who will arrange pick up service if you call them and place an order.  We ordered some wine from our local wine shop, and they are going to deliver it to our doorstep tomorrow!  That's pretty cool AND very enterprising.  Our local independent bookshop will bring your purchases to their curb for you to pick up.  There are scores of examples like these in our town.  Do you have a lot of stores in your town that are dong the same sort of thing?

Tell us how you're feeling.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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That's another fine TARDIS you got me into Stanley

« Reply #1 on: March 18, 2020, 03:49:05 PM »

Not scared but depressed. Sort of "F*** it, i'm gonna die. Ah well, S*** happens."
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
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« Reply #2 on: March 18, 2020, 09:45:41 PM »

That wine sounds romantic, MooseMom! Very nice! Hope you enjoy it. Perhaps a small cheese tray or charcuterie board to top it off....(I love love cheese!)
Hubby stood out in the rain in a long line at 7 this morning. He brought me home some flowers...little lavender scented ones painted on the toilet paper we so very much needed. Not as romantic as your wine or as fun as a book shop but nonetheless both wanted and enjoyed. lol

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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
SooMK
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« Reply #3 on: March 19, 2020, 08:59:40 AM »

It's all discouraging. I worry so much for my kids and grandkids and far away relatives. Maybe I'll never see them again. I feel so fortunate because I can get out in my yard and garden and hail my neighbors as they work in their yards. I have so many projects that I have plenty to do. My volunteer gigs are all cancelled and I miss that social life. I read about what's happening to our hospitals and to medical personnel who don't have the tools that they need to stay safe and do their jobs and I can't see the other side of all this. And I'm enraged. I know at some point we will start hearing about those we know and those we love or my husband or myself will get sick which is terrifying to think about.

Our local stores in my small town are coming up with a few enterprising things to try to stay afloat.

I hope all of you are able to stay well.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
iolaire
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« Reply #4 on: March 19, 2020, 10:35:17 AM »

I'm loosing weight now that I'm hope and don't have access to the free snacks and food I'm fortunate to have at the office. I support school meals programs and recently realized how much I also benefit form my free food program at my work - nuts, fruit, granola bars, yogurt, packaged salads, hummus with pita, milk, juice and more recently packaged sandwiches and smaller tasty things like buffalo chicken dip with pita chips.  Anyway now with more measured meals and limited snacking I'm now down below my 197 weight in November and not over 200+ like December, January and February!

SooMK my wife is also starting to miss all our volunteering and other actives. I'm less worried about that but I'm sure in a month I'll miss it a lot more.  She hasn't really settled down for true highly productive work at home as she doesn't have a monitor yet, and is still going to work on certain days to get stuff done - so I think the days at home are harder as she is not as busy as me.

We are starting to do neighborhood walks daily and continuing the 3-5 mile weekend walks we added at the new year.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
MooseMom
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« Reply #5 on: March 19, 2020, 12:23:42 PM »

I've been thinking about the plans I'd made for the rest of the year and how I probably won't be able to fulfill most of them.

We'd planned our annual beach holiday in August to N. Michigan; it's something we look forward to so much each year, and I am hoping we'll still get to go.  As each year passes, I become more acutely aware that there are more years behind me than are in front of me, so time is more precious.  One year missing out on my annual plunge into Lake Michigan would be sorely missed.

Speaking of swimming, I buy a season pass each summer for our local park's outdoor pool.  I've been going there each summer for 15 years, and again. even missing just one year would make me unhappy.

I spend up to a month each autumn visiting friends and family in London each year since my transplant, and I would frankly be devastated if I couldn't go this year.  I can barely stand to think about it.

On the other hand, I went out for a walk this morning before the rain was due to begin, and I saw so many robins!  Spring is definitely here!

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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #6 on: March 19, 2020, 01:52:34 PM »

Not really sure how to answer this without coming across as a total nut.

My work productivity is definitely something left to be desired. I can easily work from home now no problems at all and stay on task, but having my husband home is the problem. He interrupts my work with questions, talking, the blaring television with all the non-stop COVID-19 press conferences. Needless to say, I am almost a week behind in work. Technically, he can still be at work on the outside, but between his mandated "self-monitoring for symtoms" and then "his need to protect me from bringing anything home", he has decided to stay home. He skates at the outdoor oval in the morning and that's my "quiet time" until they probably close that too!

Like other places, events are cancelled, businesses shuttered, and take-out/delivery food only. The stores have bare aisles and no toilet paper. However, we are children of the former Soviet Union, so we're fine with a bar of soap and some water if all goes to pot. Stupid me, since I have not been out, I did not pick up crafting supplies or paint to pass the time when not working.

Just as all of you, I am quite nervous about the whole thing. I've already had a ventilator experience and have lung scarring so I know (at least a bit) what happens. When you're sedated and on a ventilator, you have no idea that you're going to die, so I'm not scared of that but just "being aware" is what gets me in a rut. Especially since I've been advised I've have to shipped out for treatment... Worried about my mom with respiratory issues. My father has cardiac issues and he just DOES NOT understand the concept of social distancing or to stay home.

As well, I find myself on my last nerve with some people. Look, I know the virus can a problem for everyone, but there is a difference between "I have a crappy immune system so I take vitamin C and echinacea to boost it, look at me for attention!!!!!!" people and those who actually have severe pre-existing conditions or immune-compromised. On the other hand, some people have really shown understanding and kindness, such as those that allow those with "invisible disabilities" to gladly shop with the seniors.

Like MooseMom, trips I had planned (one small, two medium) are finito. There is one that I feel is time sensitive so I am anxious I won't get to fulfill a dream.

And what about my transplant follow-up? Waiting to hear what the heck will happen in time, I guess.

So yeah, all of this is negative! But hey, my fridge and pantry are full! The governments seem to have a good handle on it up here and people (for the most part) are respecting social distancing. I'm a country that is generally prepared for severe health situations, than say, a place like Uzbekistan. I am blessed to have a space for fresh air as well as thankful a couple people reached out to see how I'm doing.

But between self-isolation and a snowstorm, I could start drinking heavily!  :P
« Last Edit: March 19, 2020, 01:54:32 PM by UkrainianTracksuit » Logged
MooseMom
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« Reply #7 on: March 19, 2020, 02:28:19 PM »

That wine sounds romantic, MooseMom! Very nice! Hope you enjoy it. Perhaps a small cheese tray or charcuterie board to top it off....(I love love cheese!)
Hubby stood out in the rain in a long line at 7 this morning. He brought me home some flowers...little lavender scented ones painted on the toilet paper we so very much needed. Not as romantic as your wine or as fun as a book shop but nonetheless both wanted and enjoyed. lol

The wine has just arrived!  To be honest, I'm not sure it's as much about being romantic as it is about wanting to support our local small businesses.  On the other hand, my husband did order (by phone) 4 scented candles from our local candle shop (you can go in and create your own fragrance blend, and they'll make it into a candle or into a room spray or whatever you'd like!) and talked them into delivering it to our home, and they arrived just a few hours ago.  That's pretty romantic!

UT, no, you don't sound like a nut at all.  We all feel the same.  And you're right in that we are not the echinacea sort of people, are we.  Why would you be "shipped out" for treatment?  You see, that's the sort of question I have been asking.  Do you not have a good local hospital, or would you have to be "shipped out" (to your tx hospital?) just because of your tx status?

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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #8 on: March 19, 2020, 02:45:18 PM »

Better than the usual whine - '"I don't wanna go to dialysis!".
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UkrainianTracksuit
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« Reply #9 on: March 19, 2020, 03:24:19 PM »

UT, no, you don't sound like a nut at all.  We all feel the same.  And you're right in that we are not the echinacea sort of people, are we.  Why would you be "shipped out" for treatment?  You see, that's the sort of question I have been asking.  Do you not have a good local hospital, or would you have to be "shipped out" (to your tx hospital?) just because of your tx status?
We have a local hospital but “good” is questionable. It has a small ICU unit though.

The local renal unit follows my tx kidney but they “cut the cord” so to speak about my tx pancreas since it is out of their field. Doctors don’t have experience with such a thing here, so yep, off to the tx hospital.
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MooseMom
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« Reply #10 on: March 19, 2020, 08:55:48 PM »

How far away is your tx hospital, UT?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #11 on: March 20, 2020, 04:58:25 AM »

How far away is your tx hospital, UT?
It is around a 9 hour drive (could be more depending on the season) or around 2 hour flight.  (Both flights amount to that, but with the layover between connections, more like 5 hours).
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MooseMom
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« Reply #12 on: March 20, 2020, 07:44:16 AM »

Oh, jeez.  That's quite the journey!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #13 on: March 24, 2020, 03:46:33 PM »

We bought our first takeout food tonight. A $7.99 large three topping onion, mushroom and pepperoni pizza for pickup!  Wife goes into grab it. We are both wearing masks going out and sanitizing her hands when back to the car. Anyway pizza was good.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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a good year for Chevys

« Reply #14 on: March 25, 2020, 05:33:43 AM »

I ordered from a local deli via DoorDash-enough matzo ball soup, turkey pastrami and Swiss cheese to last about 3 lunches; also half a loaf of the best rye bread I ever had. And Cole slaw! It was a sodium laden treat from heaven. I am sick of my own cooking, and I have no good grill here in Florida. I'm going to venture out to the grocery store tomorrow.

I've decided to stay in Florida until the end of April (unless it gets just crazy bad here) partly because I know when friends and family get sick at home, I'll be tempted to try to help. By putting 1000 miles between me and temptations, I feel safer (from my own stupidity) Does that make any sense?
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PD for 2 years then living donor transplant October 2018.
iolaire
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« Reply #15 on: March 25, 2020, 05:52:03 AM »

I ordered from a local deli via DoorDash-enough matzo ball soup, turkey pastrami and Swiss cheese to last about 3 lunches; also half a loaf of the best rye bread I ever had. And Cole slaw! It was a sodium laden treat from heaven.

..Does that make any sense? 
Yet it makes sense.  Isolation away from home should be easier.  I hope you have facetime/skype whatever to chat with the loved ones.

That meal sounds great and tastier than pizza.  We were debating burgers, or I would have enjoyed a lower cost steak and such but the ended up being a simple chose and low cost.  Lots of higher end restaurants are now selling for pickup or delivery but its hard to look at a fine dinning menu at its price and think of speeding that for take out.  But its early....
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
MooseMom
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« Reply #16 on: March 25, 2020, 08:11:35 AM »

I'm glad you arrived at a decision, Cupcake.  My elderly in-laws are in their condo in San Diego that they bought back in the 70s, and we've convinced them to stay put.  I hate to see them having to get to an airport, then get on a plane, and then disembark in O'Hare, all of which puts them in contact with all sorts of people.

We've done a lot of cooking here at home.  My husband LOVES shopping for food, so he took all necessary precautions when doing a big shop, mostly for fresh meat.  The weather is nice enough that we can grill, so we've had grilled salmon and have grilled lamb on the menu either tonight or tomorrow.  People don't seem to be buying fresh produce in nearly the same quantity as they're buying canned goods.  Our local grocery store is small and family owned, and I follow them on Facebook.  They post several times a day about what they have on hand, what they are out of at the moment, and what they are expecting.  They also have a two hour window in the morning for their "vulnerable" patrons.  So for now, we're good for food.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
MooseMom
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« Reply #17 on: March 25, 2020, 08:42:32 AM »

Well, as I mentioned somewhere, my husband is working from home this week because the legal dept. in the city where he works has closed down because one of the secretaries lives with her boyfriend whose work colleague tested positive.  The lead attorney shut down the department for the week.  The secretary has not reported experiencing any symptoms.

However, last week one of the other guys in the legal dept. went home early because his wife called and said she had a fever.  I immediately thought "coronavirus", but I knew she has MS, and she goes through spells of fever among other maladies as a result of the MS.

Just a few minutes ago, my husband was notified that his colleague's wife has tested positive for covid, so said colleague will have to remain home for 14 days.  Naturally, I am really quite nervous now.

I can easily handle the day to day isolation.  I have plenty to do, and I can make use of the many walking trails in my area.  I have easy access to food and exercise and anything else I need.  I have plenty meds (all via mail order pharmacies), so no worries there.  But my biggest fear in my life was of having to go on dialysis and not being free to go to London to see my son.  I had so many nightmares about that.  Having a transplant has given me the freedom to go for a month every year and visit with him and all of the friends I have over there.  But now, having a transplant poses particular risks, and I feel trapped.

Also, I am becoming increasingly sad and angry that the kidney community seems to be so easily discarded and dismissed and deemed "irrelevant" by those who want to "reopen the economy".  I certainly understand the economic harm this is causing, and we do everything we can to still support our local businesses.  But it feels like Boeing is more valuable than our lives.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
MooseMom
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« Reply #18 on: March 25, 2020, 01:52:31 PM »

I've always known that my husband is a comfort eater; he is like most people in this regard.  And he has a sweet tooth.  And he has had T2D for about 3 years now.  He has done a fantastic job in looking after himself.  He lost a lot of weight and diligently counts carbs.

However, he finds some kind of emotional outlet in buying things he cannot have, leaving me with all of that stuff.  He's just returned from the post office but found himself having stopped at the All Chocolate Kitchen, buying chocolate balls, a chocolate chip cookie, and a chocolate croissant.  Oh, and a quiche for my breakfast tomorrow.  I looked at all of his purchases and said, "You've bought all of the things you wish YOU could eat, didn't you?"

Now, I don't have a sweet tooth at all, and I don't eat much.  We have so much food in this house that I am sure I am going to end up having to throw a lot of it out.  I can't possibly eat all of the "naughty" stuff he bought.  And I believe that wasting food is a sin.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #19 on: March 25, 2020, 03:54:26 PM »

Quote
https://www.autoblog.com/2008/01/24/danica-patricks-godaddy-com-ad-banned-from-super-bowl-because-o/
A well known cardiologist once told me that line of thinking was dangerous as it was the "waistline or the wastebasket".
« Last Edit: March 26, 2020, 04:16:44 AM by Simon Dog » Logged
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« Reply #20 on: March 25, 2020, 08:05:19 PM »

Last week, the province called a state of emergency. And now, all non-essential businesses had to close. The list of non-essentials is pretty long so stuff is still open, just nothing fun. Besides, I am not allowed to go out anyway so it's not like I can enjoy myself. Luckily, the liquor stores are still open (as a way of harm reduction for those who suffer) but it is just wrong and frivolous to send someone there as we've all been advised to only go out for necessities. A bottle of cognac is a necessity, right?

Self-isolation with my husband is a drag. He won't do any of fun things, like take out or drive thru food because "it's a waste." His Survivorman brain cells have kicked in so if it is inefficient, he will not do it! Hence, no trip to the liquor store. Going for a drive confined in the car? No! Waste of gas!

The pictures of the grocery stores are nuts. They let in around 100 people at a time and there is a long line outside of them. We're not a friggin' metropolis it's just odd to me. One of the small things that I really enjoyed would be a trip to the grocery store just to buy fun things, like a new cheese or an almond croissant. Whatever looked new! Now, that's out of the picture because they tell people to get out of the stores if they are in too long. Get your necessities and GO!

Did I mention my husband smells of garlic too?  :sos; He eats a bulb of it a day. Some days, when he's cutting it up, it smells good, and then other times, I can't tolerate it.

One last point: I'm just dismayed at the attitudes of some people. A person wrote that they have long believed that we need a eugenics program because of people coming out (young people) with different chronic conditions in the wake of the virus.
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« Reply #21 on: March 26, 2020, 04:01:53 AM »

Luckily, the liquor stores are still open (as a way of harm reduction for those who suffer) but it is just wrong and frivolous to send someone there as we've all been advised to only go out for necessities. A bottle of cognac is a necessity, right?

UT: Cognac?! Woman, you have expensive taste! And I applaud you for it! I'd personally like a couple glasses of Irish Cream. Thanks a lot, now I can't stop wondering if our liquor stores are open.

MM: Hope you enjoyed that wine enough and that the headache won't prevent any future endeavors into the cellar. It could've been the candles -check them for metal wicks. I read metal is not good. I'd hate for you to have to put a cork on your wine tasting. Or did you drink the whole bottle? Ah well, if that's the case then just like I told UT about her thirst for Cognac, "woman, I applaud you!"

Carry on now you two, carry on.... :wine;
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
MooseMom
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« Reply #22 on: March 28, 2020, 09:14:34 AM »

There are several threads about covid-19 on this forum, so I apologize if I have already posted about at least part of this somewhere else.

I think I told you all that about two weeks ago, one of my colleague's wife, who has MS, came down with a fever.  Of course, my red flags went up, but I did know that she has experienced fevers in the past; it seems that this is one of the ways MS presents in her.  Still, I was wary.

A few days after that, one of the secretary's live in boyfriend was exposed to someone diagnosed with covid, so the head attorney closed the entire department.  My husband has been working from home all this past week.

Yesterday we got notified that the colleague's wife has, in fact, tested positive for covid.  The legal department is now closed until 4 April at the earliest.

So, this thing is creeping just a little bit to close for comfort!   :o
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #23 on: April 02, 2020, 07:56:31 PM »

Doing good here, it is rest of the world that is getting sideways!  My wife took leave of absence from work due to her bronchitis and not wanting to bring any virus home to infect me on PD, don't need anymore issues.  Some stores are closed but grocery, pharmacy, etc are still open so we can get what we need.  Doing a lot of meals at home might get a carry out pizza once in a while but staying close to home.

Finally starting to get caught up with emails and other stuff I have ben avoiding for the last month and doing paperwork, still have too much junk!!  Lots of online meetings for committees & boards I am on, so time marches on.  We are even doing online meeting for my Boy Scout troop to keep the boys busy and involved through this time.  The council is trying an online campout this weekend, this might be interesting.? 

Everyone stay healthy, stay safe & Be Prepared!
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« Reply #24 on: April 14, 2020, 09:05:38 AM »

Well, the sun is shining but it’s cold. So yesterday I decided to make a ginger liquor. First made sugar syrup, than stuck quite a bit of juicy fresh ginger in, left it to simmer for an hour or so, turned it off, put 1 star aniseed in (must be nice) and today I mixed it with gin. Oooh it’s absolutely delicious. When this lot is finished I’l try lemon liquor. The previous lot was Kummel (with caraway seeds) also absolutely scrumptious.


Love y’all, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
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