Talking about our conditions

[Archives1]

I stumbled on a great article about dealing with and talking with our conditions to friends, family, colleagues. It isn't specifically for incontinence, but it applies to us. Help i where you find it.
It is in a web-accesible site called "The Lily". Lily Lines seems to be the title of the blog. The subtitle of the article is "A chronic illness upended my life. I'm still trying to find a new normal."

Does this sound familar to people new to this site or us established members?

Another quote: "If I'm feeling particuliarly awful:..."
She illustrates with numeroous "cartoon" drawings, in and of themselves worth viewing.

The author has POTS (Postural Orthostatic Tachycardia Syndrome). Heck. I'd never heard of it and sounds like it has nothing to do with incontinence. No matter; it apples to us.
Here's the URL i copied: https://www.thelily.com/a-chronic-illness-upended-my-life-im-still-trying-to-find-a-new-normal/
I'm no longer sure which news letter gave me the link.
Give it a try. If nothing else, you will sympazies.
My spelling went all to hell, today. Oh well. (No matter!)

 

[Archives1]

I sympazies Alas. My spelling is akin to an incurrable condition too.

 

[Archives1]

WE can certainly talk about incontinence here but it is not a topic of "normal everyday conversation"

 

[Archives1]

Been through all this with close family member.

POTS is a common form of dysautonomia...which means some of the systems in your body that your brain is supposed to regulate automatically are not being regulated properly. They often go from too much to too little over and over again, triggered by almost anything including temperature or pressure changes.

Many people with POTS have severe gastro issues and are very prone to UTIs among many other symptoms that come and go such as severe dehydration.

People with POTS often had low level symptoms their whole life but never severe enough to worry about. Then something happens to magnify all the symptoms and make things much more unregulated. This is often due to a concussion or other major illness or surgery that makes the body work too hard. For people that are predisposed to dysautonomia, which may be genetic in some cases, their body just can't recover from this trauma.

Symptoms like heart racing from dehydration make people feel like they're dying and cause them to panic. This freaks out the doctors who can't figure out what caused the episode and often refer patients for psychiatric evaluation.

Like so many other chronic conditions, it often takes many years and many doctors to receive a POTS diagnosis. Once the first doctor labels your chart as "psych patient" many others will fall back on that crutch and not look into other medical reasons. Therapy is often needed to cope with the fact that your doctors don't believe you and think anxiety is causing the symptoms instead of the other way around.

Many people with incontinence likely feel the same way. Also, similar to incontinence, many people are never cured, they just manage the symptoms the rest of their life and learn to advocate better for themselves and deal with the new "normal."

Dysautonomia International: Dysautonomia Awareness, Dysautonomia Advocacy, Dysautonomia Advancement

www.dysautonomiainternational.org

 

[Archives1]

Maymay. Yeah, my spelling was never great, but this is ridiculous. And the disease is probably called old age - for me, anyway. You should see the squiggly red lines before I proof read; I ran out of patience with myself. Sigh. You probably got all "A" in grade school spelling tests. The only test I aced was the one for all the words that violated the "i before e" rule. And then the fourth grade teacher embaressed me by waving my test in front of my classmates, who knew what usually happened to me.
Hope we are amusing this forum. He he he.

 

[Archives1]

correct spelling or not you got your point across and that's what really counts

Maymay. Yeah, my spelling was never great, but this is ridiculous. And the disease is probably called old age - for me, anyway. You should see the squiggly red lines before I proof read; I ran out of patience with myself. Sigh. You probably got all "A" in grade school spelling tests. The only test I aced was the one for all the words that violated the "i before e" rule. And then the fourth grade teacher embaressed me by waving my test in front of my classmates, who knew what usually happened to me.
Hope we are amusing this forum. He he he.

 

[Archives1]

So the bottom line is i before e except after pee?

Help is needed please send Kole with a cuppa Joe.

 

[Archives1]

@Maymay941 Here's my dog Kole

 

[Archives1]

Tell him to fill that cup i take milk and two sugars.
What a GOOD DOG

 

[Archives1]

@Maymay941 yes he is a very good dog

 

[Archives1]

Oh he is SO HANDSOME.
What sort of things does he do in the ccourse of partnering with you?

 

[Archives1]

he is still in the early stages of his training and thee has been a huge setback in his training he still needs to pass his AKC CGC test for his full public access to than start his task bassed training there has been a big break up in the original agency that was training that was Paws 4 Independence well the board of that group voted to dissolve the group and a core group of us which includes the head trainer and group founder have gotten together to form a new group K9s 4 Freedom well the process of reforming into a new group has been a slow challenging process

 

[Archives1]

@Maymay941 when we finally get to his task-based training he will be trained to help with opening and closing doors retrieving dropped items and using a laser pointer retrieving items off of store shelves when shopping

 

[Archives1]

What will he use a laser pointer to do?

 

[Archives1]

@Maymay941 point to the items that you want on the shelf

 

[Archives1]

Sorry i still dont understand fully. So you tell him to point the laser then a person gets the item down for you?
Sorry Dave, i am slow learner here!!

 

[Archives1]

usually, I am in a wheelchair when I am shopping so reaching things on some shelves can be a challenge so when Kole is task trained I will be able to use a laser pointer to point to what I want and Kole would retrieve the item and put it in the basket or hand it to me

 

[Archives1]

Nice dog.

 

[Archives1]

@sport thank you yes he is

 

[Archives1]

Now i understand Dave. I guess the difficulties are items on high shelves for me. I use a handi cart and have to struggle out ofthe miniature seat, heave ho, stand up and grab items i want on higher shelves.
Sometimes i bring half the shelf down with me and sometimes i don't.
The funniest time was when the forward and backward handle got stuck. I was ramming into a cardboard display on the corner of an aisle and every time i put in in back mode the cart would shoot forward and hit the flimsy display sending packets of who knows what flying. An employee of the snooty grocery store was right there yelling at me like a cop and i kept saying, "sorry!! Sorry!! As i rammed the thing into the furniture.
A few dozen attempts later i got out and made him push the machine manually out of the managled display and rode off in dignity.
I heard him mutter, "thats why you dont let children dtive these things!"