Kidney Disease

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I'm new here!

Hi, my name is Slinkyman. I'm here because my wife and I are dealing with a lot physically and mentally and I am looking for support/information/community.
#MightyTogether #Anxiety #Depression #COPD #DiabeticNeuropathy #CKD #Fibromyalgia #Arthritis #BreastCancer

10 reactions 5 comments
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I'm new here!

Hi, my name is Slinkyman. I'm here because my wife and I are dealing with a lot physically and mentally and I am looking for support/information/community.
#MightyTogether #Anxiety #Depression #COPD #DiabeticNeuropathy #CKD #Fibromyalgia #Arthritis #BreastCancer

10 reactions 5 comments
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Share an important, informative, or memorable part of your PH1 journey.

Each of our health journeys are multifaceted, complex, and unique — but that doesn’t mean we’re alone in what we go through. Those shared experiences are what make us Mighty! 💪

Today, share a part of your PH1 journey that has stuck with you and made a lasting impact — no matter if it’s a positive or negative mark.

#KidneyDisease #KidneyTransplant #PH1 #PrimaryHyperoxaluriaType1 #ChronicIllness #RareDisease #Caregiving #KidneyStones #LiverDisease

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My little Kai

He's 18 1/2 and he has 4 stage Kidney disease. I thank God for each day he's with me.

17 reactions 6 comments
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I have to take better care of myself

I had a dream last night about 2 of my good friends, who are no longer here with me. One by suicide when we were teenagers. My other friend, unexpectedly at the beginning of the year. This holiday season has been really rough and I relapsed back into my mindset that I don’t matter. I am sleeping and not eating. I guess hoping to not wake up. I had a dream that I was reaching up from the clouds trying to open the gates of Heaven to enter. Both of my friends were on the other side of the gate, reaching there arms through the gate and pushing me back down to earth. One was telling me that I don’t belong yet in Heaven and to take myself back to finish the work that God created and blessed me for. I never had family or trust in humanity but to know that God has and always has been loving me, I got up out of my bed, ate and showered. I am loved more than my mind will allow me to feel. Thank you God for allowing me to have another day to try and get it right. #KidneyDisease #ADHD #MentalHealth #Anxiety #AspergersSyndrome #PTSD

6 reactions 1 comment
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I'm new here!

Hi, my name is Pam "allforjack". I'm here because I am a medical momma that spent the last 15 years caring for my full care baby Jack. He had an hypoxic event (HIE) at birth which left him with kidney disease, epilepsy, failure to thrive, non-verbal and wheelchair bound. He passed last year and I am still reeling with grief and depression. Im looking for a community that I can share things with and even maybe inspire someone else that struggles to keep their head above water both financially and emotionally.

#MightyTogether #Grief

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What’s a health goal you set but find it challenging to implement?

Making health goals can create a roadmap for you to follow when you’re looking to make decisions about your well-being. It’s not always easy, though, to implement every goal immediately — especially when you’re met with challenges or barriers. This can be anything from health limits and demands, limiting beliefs, finances, your living situation, or even circumstances that are out of your control.

What’s a health goal you set but find it challenging to implement?

#KidneyDisease #Caregiving #Parenting #RareDisease #Transplant #PrimaryHyperoxaluriaType1 #CheckInWithMe

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Hi! I’m new here #AcousticNeuroma #Fibromyalgia #Diabetes #MDD #PTSD #Anxiety #Deaf #HardOfHearing #ChronicFatigue #chronicvertigo

Yes, I have all those issues and more. I just can’t remember all of them! LOL! 😆 I’m single sided deaf from surgery to remove my acoustic neuroma in 2009. They went through the ear and also pushed aside my brain to cut most of the little bugger out. They cut my balance nerve. The other side was supposed to pick up & stabilize me, but it’s lazy. I’m still unsteady after 14.5 years.

My most recent dx’s are chronic kidney disease stage 3a (I can’t remember if it’s a or b. It’s the least affected one. I’m working on reversing it.), C-PTSD from 19 years of raising our 2 kids from Russia (both alcohol affected by birth moms so they have permanent brain damage, delayed development, learning disabilities, ADHD, PTSD, extreme impulsive anger issues & more.) , precancerous colon polyps and diverticulosis. Yeah, fun stuff.

I decided to join this group because of the many different diagnoses I have. Plus my kids having many dx’s too. So, HI! 👋🏼

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How has PH1 affected your dating and love life?

From employment to body image, dating to maintaining personal relationships, we know PH1 symptoms can affect life in many different ways (both good and bad).

Whether it’s stigma, lack of public understanding, or the impact your condition has on your confidence and self-image, it can be challenging to navigate relationships of all kinds.

How has PH1 affected your ability to date and explore romantic relationships, if those are of interest to you? Let’s share and help one another in the comments below. 💌

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1

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See full photo

How has PH1 affected your dating and love life?

From employment to body image, dating to maintaining personal relationships, we know PH1 symptoms can affect life in many different ways (both good and bad).

Whether it’s stigma, lack of public understanding, or the impact your condition has on your confidence and self-image, it can be challenging to navigate relationships of all kinds.

How has PH1 affected your ability to date and explore romantic relationships, if those are of interest to you? Let’s share and help one another in the comments below. 💌

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1