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On living with a chronic illness

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posted on Jun, 24 2019 @ 09:32 AM
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You are definitely not alone.

I have a genetic chronic disease - Poylcystic Kidney Disease. Because of that, I also have high blood presure that, when not medicated properly, would make mortals tremble in fear...add in a mix of diabetes type 2, compromised immune system and some bone structure decay and I won't be the grumpy old man telling kids to get off my lawn.



I'm about 10-11 years on him this disease and one of my older brothers just started in-home dialysis and he is an additional 10 years ahead of me, so I have a roadmap of what I am facing and it's pretty terrifying. He is on the kidney transplant list.

I get all the same advice you do from people who think that exercise, a good diet, proper medication and the like will make it all better. But they don't really understand, while those things do help, there is no cure.

and I have good days and bad days. Days where no matter what I do my kidneys ache, headaches, fighting off infections constantly, achy bones, etc. Sometimes I wonder if I really want to live to get old enough to where a transplant is a requirement for survival.

For now, I take each day as it comes and try to be positive about everything. There's no guarantee's in life and none I'll ever live that long to begin with...because people drive like maniacs these days lol (and I do a lot of driving). Whatever will be, wil be.

So thank you for sharing your story. Here is mine to add to the list with others who have also shared.

Here's a good link I found explaining what it's like to have a chronic disease:

The Spoon Theory

I've hope you find it helpful.





posted on Jun, 24 2019 @ 08:08 PM
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a reply to: liveandlearn

I’m so sorry to hear your daughter is going through it! And glad that she’s not going blind any time soon.

Before I was diagnosed I met a blind Type 1... I had no idea about any of it back then. We both smoked between classes at college and that’s how we started talking and I asked her if there were any symptoms before she went blind and she said no, one day she could see and the next day she couldn’t. She said it probably had to do with smoking and not drinking enough water and the high blood sugars. I think about her often. I only shared maybe a handful of smoke breaks with her but I will never forget her or the things she told me...

I love you, your words mean so much to me.

a reply to: Night Star

Thank you for your kindness! The feelings are mutual, feel free to PM me any time... I know you have your own things going on as well as your husbands things. I’m glad to hear that he’s got a good attitude though! Love always, Lou



posted on Jun, 25 2019 @ 11:30 AM
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a reply to: dollukka

I so appreciate your contribution here, thank you so much for sharing. That guy on the train clearly wasn’t aware of the Type 1 diabetes, that’s what I’m talking about! But mostly people mean well and I know it’s not exactly a death sentence(rude of that lady!) but sometimes I do feel like I am cheating nature and cheating death a little- cause if it were up to nature alone I’d be dead! I’m kinda like Darth Vadar relying on technology to survive lol! Also I think in the future I will be more interested in the pump.

a reply to: Skid Mark

It is truly a heavy burden, but I’m carrying it, you take care of yourself too!!


edit on 25-6-2019 by geezlouise because: (no reason given)



posted on Jun, 25 2019 @ 12:03 PM
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Thanks everyone for sharing. I live with something called psoriatic arthritis. During a flare up my immune system attacks connective tissue such as ligaments and tendons. Due to the way opioids were marketed to Dr's around the turn of the century, I also live with addiction but through the grace of God am able to live a life in recovery.

What get's me though on a bad day is (as cheesy as it sounds) the AA 'One Day at a Time' philosophy ... meaning if I am sore beyond belief due to a flare up and or craving something to help with pain, I just focus on what I have to do today to make it through, and I won't even worry about tomorrow until it shows up. ... pretty simple but took time and practice in order for it to work for me.

Peace,

JD350



posted on Jun, 25 2019 @ 12:21 PM
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I'm going to take a different approach..

I have no chronic illness, no pain that keeps me up through the night. I dont drink, smoke or do drugs, hell never had a beer in my life. =)

I have an ACL reconstruction from a hockey injury and a few healed up broken bones from skateboarding when i was younger.
I'm 45 about to be 46 in a few weeks and can't remember life being as fun, rewarding or enjoyable as it is now.

What I do have is a willingness to talk to people. No judgement and no tired cliches. If anyone ever needs an ear or just wants someone to ramble to no questions asked I will volunteer. It might not make a difference or maybe it does for one person. Either way, thank you for making this post.

Hopefully everyone on it can find some small measure of peace dealing with their individual scenarios.



posted on Jun, 25 2019 @ 08:17 PM
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a reply to: Serdgiam

I like your good vibes and I’m thankful of your contributions here. I’ve come a long way and I’m still working on contentment. For the most part I’d say I’m pretty laid back myself, I don’t ask for a lot and despite my heavily emotional OP, I really don’t complain too much. I have it pretty ok as well I guess, outside of the evil Type 1... and some other unusual circumstances. The struggle is real.

a reply to: AnonymousMoose

Thanks! I hope I have a good support system in place too.

Your type of job must weigh down the spirit. take care of yourself!



posted on Jun, 27 2019 @ 09:11 PM
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a reply to: research100

I so appreciate your story. Sometimes Type 1 is just one out of several conditions... even in my case. And it never is easy even if some of us make it look easy or make all those claims about it being easy, lol. It’s just not, but you’re right we do what we gotta and when we don’t we face the consequences hard. There’s no escaping those harsh consequences.


a reply to: Liquesence

❤️

a reply to: ElectricUniverse

I have no words, I am so sorry you are going through these things... it sounds like quite a lot. I thank you for sharing and the feelings are mutual, stay strong! You are not alone!!



posted on Jul, 4 2019 @ 04:05 PM
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a reply to: kinglizard

Thank you for your encouragement here, you also are not alone!

a reply to: Annagramma

Thank you for sharing your memory here... honestly I've read it about a thousand times now but I have been so busy and sometimes I don't know what to say right away. (I'm determined to respond to everybody on this thread though!)

Somebody once asked a group of us what the three most pleasurable things we as a human species needed to survive are and most people answered the same three things: sex, food, and sleep. Maybe not in that order. After my diagnosis as I was recovering in the hospital... I remembered it, and it seemed like the three top most pleasurable things that we as a human species need to survive had been severely compromised for me... lol, and I got real sad.

Your story about the little child not being able to share in the treats reminded me of that maybe. But now that I've been feeling better... it's not like I don't derive pleasure from those things anymore. I still love food, even if it kills me, lol.

a reply to: Rapha

Wow well it does sound like you have had some experiences! I'm glad you survived that cycle accident and lived to tell the story. And while I might not relate to all of what you said (maybe a younger version of me might have, but not anymore sorry!), I do believe there is something almost otherworldly to epilepsy and seizing, or having a chronic illness... where we're forced to face our mortality and sometimes forcing a connection to the "other side" where strange things come through.

It's all very curious stuff... I hope you take care of yourself!



posted on Jul, 14 2019 @ 02:48 PM
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a reply to: Thanatos0042

The Spoon Theory is soooooo good wow!

I also take each day as it comes and I do my best to stay positive as well. Hopefully I make it to be a total pain in the butt in my old age, but you're right... there's never any guarantee. That's why each day is so important.

a reply to: opethPA

Thanks for offering an ear, even if it's an ear that could never understand these darker subjects, or what it's like to have a beer... lol. Cheers!




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