Kidney Disease

I’ve spent a lifetime learning how to endure.
Endure the pain that locks my joints, edure the judgment that follows when I walk without a cane, then use one moments or days later.
Endure the silence that creeps in after I advocate for myself or my daughter.
Endure the way people smile at me with pity or worse with suspicion.

I’ve heard whispers and accusations since I was a child. That I was faking and that I wanted attention. I was lazy and I was too sensitive or depressed. That I needed to pull up my boot straps and push through, and of course I believed them.
I internalized the idea that my pain was too much for people to care about, that my worth was tied to how well I could perform as being "normal" and how much my "normal" body could do. So I learned to hide my pain and I learned to shrink myself in order to be accepted and fit in.

But as I grew pain has taught me how to listen deeper. Becoming a mother has taught me how to fight louder and surviving has taught me I don’t owe anyone proof of my pain.

I’m disabled and a mother to a fierce, magical little girl. She has epilepsy, kidney disease, and the most radiant heart and light I’ve ever known. She is the reason I rise when I’d rather disappear. She is the reason I advocate even when my voice shakes and she is the reason I stay soft in a world that hardens people like us.

Raising her with a body that betrays me daily is a lesson in adaptation. Every task from bathing her, making meals or getting out the door requires calculations most people never think about. Some days I can pass as functional, and some days I can barely lift my arms, but every day I am her safe place.
That’s the most important job I’ll ever have and one I cherish daily.

We live in a world that asks disabled people to justify our existence and a world where medical care is rationed. Where accessibility is treated like charity and not a right and where even family can become a battlefield of misunderstanding and cruelty. I know what it feels like to be gaslit by loved ones and I know the heartbreak of being tolerated instead of embraced.
I’ve felt invisible at family gatherings and I’ve smiled through tears so my daughter wouldn’t see how shattered I was.

But I’m not here to center the pain of being misunderstood, I’m here to name it so I can set it down.

I’ve learned that my voice is sacred and that rest is resistance. That saying “no” is necessary and protecting my peace is a priority for me. I’ve also learned that boundaries don’t make me mean, they set me free and demand the way I deserve to be treated.

If you’ve ever been made to feel like a burden, you're not, if you’ve ever mourned the loss of people who chose judgment over love, let them go. And if you’re building a life inside limitations please know that beauty grows there too.

I write to remember who I am and who I desire to become.
I write so my daughter can see her own worth and so she does not shrink herself, but blooms over and over again.
I write so others don’t have to feel as alone as I did.

Disability does shape how I move through the world, with tenderness, awareness and empathy.

If my story resonates with you, please know that you are worthy, you are not a fraud and you don’t have become small to be loved.
You don’t owe anyone your pain, but you can turn it into something powerful, whatever that means for you.

All my love, Mighty warriors 🤍

#Disability #JuvenileRheumatoidArthritis #ChronicFatigue #Lupus #MentalHealth

LEARN FROM OTHERS WITH FIBRO,PMR, IBS & KIDNEY DISEASE

Hi, my name is happypat75. I call myself that since I left my husband of 49 years. We are Americans who moved to Thailand our dream retirement home. He was a good father of our 4 children now adults and a good provider. He is very selfish and was always a spoiled son.
When we moved I started seeing a different side to him. I overlooked a lot until it progressed. After moving, together 24/7 then covid affected us as everyone else.
My stress was worse, I got sicker being taken to the emergency room often for pain.
Our marriage was bad and my health deteriorated. We flew to Bangkok to see a specialist. Many tests with wonderful care, I was diagnosed with Fibromyalgia and Polymyalgia Rheumatica, added to my diagnosis of IBS in my 30s.
I knew our marriage was over when I told him our marriage improves or I leave. Our home became a horrible place to live in. Then the accidents started to happen to me. It progressed to physical abuse. I was then diagnosed with Kidney disease stage 3.
I had been researching his behaviors for two years. He could have written the book for Covid Narcissist. His behavior was word for word for the diagnosis. I saw an email from a collection agency. He spent our joint savings accounts, investments and most of my personal savings. I was very sick and trusted him with everything for years. He was gambling still is.
I moved out. I live in a lovely Thai home by myself in a quiet gated area. Thank God I worked all my life. I did all the normal things, change bank accounts and took my name of everything. I am a strong believer in Jesus and know I could not get through all my years without his love, strength, guidance and my faith. I believe everything happens for a reason.
Where am I now one year on my own. I have the same health issues. I take half the dosage of meds and eliminated some. I have lost thirty eight pounds by eating Vegan food. I enjoy Thai delicious vegan foods. My last Dr. visit all my counts were great. She was amazed my change.
All of us with chronic health issues know it is not one day at a time it can be one minute at a time. When I feel good and go out I can get sick, must go home weak, dizzy and hurting all over. I vomit a lot. Some days I do a few things then others I can not. I cook a little and when we eat out I order extra foods and freeze it. I have chores I should do but I say I will give away my big clothes someday or clean out drawers/organize cupboards some day. I try not to let it bother me but it does.
I try to keep a positive attitude it is hard. I read " My worse day alone is better than my best days with husband the past 5 years." I am not a victim, I am a survivor of an abusive husband and my health issues. I look at my marriage as a Blessing, I have my kids, grandkids and great grandbaby. I pray for all dealing with abuse and health issues. Be Strong, all you Mighties Phra Jao GOD -uay phorn-BLESS -khun YOU (Thai) HAPPYPAT75

Just trying to deal with chronic pain and function as I get older and it gets worse.
Cannot take NSAIDs or pain meds while taking a benzo.
Tips on relief besides deep breathing, daily Bible study, heat, and ice.
Have 2 knees that need surgery but cannot do them if I cannot do the pt required.
Psych doc says no pain meds with the benzo. Cannot fact these surgeries without any pain meds and cannot take NSAIDs because of Chronic Kidney Disease.
Have recently lost both parents and a sudden loss of my best friend. Still have trouble with all of it.

Hi, my name is Deevine1973. I'm here because these are my diagnoses, but they don’t have me!

#MightyTogether #Anxiety #Depression #BipolarDisorder #BorderlinePersonalityDisorder #Fibromyalgia #ADHD #PTSD #RheumatoidArthritis #EatingDisorder #AutoimmuneHyperlipidemia #AutoimmuneThyroidDisease #AutoimmuneRetinopathy #AutoimmunePancreatitis #LupusNephritis #ChronicPain #ChronicKidneyDisease #ChronicPancreatitis #ChronicFatigueSyndrome

Hi, my name is Deevine1973. I'm here because these are my diagnoses, but they don’t have me!

#MightyTogether #Anxiety #Depression #BipolarDisorder #BorderlinePersonalityDisorder #Fibromyalgia #ADHD #PTSD #RheumatoidArthritis #EatingDisorder #AutoimmuneHyperlipidemia #AutoimmuneThyroidDisease #AutoimmuneRetinopathy #AutoimmunePancreatitis #LupusNephritis #ChronicPain #ChronicKidneyDisease #ChronicPancreatitis #ChronicFatigueSyndrome

Salma had always been careful—careful about what she said, what she showed, and what she hid. A five-year post-transplant recipient, she had spent years learning how to blend in. Diagnosed with chronic kidney disease in grade 7, she had endured six months of peritoneal dialysis before receiving her renal transplant. Now, in her first year of B.Sc. Biochemistry, she had perfected the art of invisibility.

No one at college knew about her past. The scar on her neck, where the dialysis catheter had once pierced her jugular vein, remained hidden beneath the folds of her hijab. The tremors in her hands, she dismissed as nervousness. The immunosuppressant pills, she took in the privacy of her home. Even her hospital visits, scheduled on Wednesdays, were easily concealed because she had a day off.

That Monday, her chemistry practical required her to identify an unknown organic compound. The choices were phenol, aniline, benzaldehyde, glucose, benzoic acid, phthalic acid, urea, and benzamide. Salma got glucose, and she recognized it immediately—just from its physical appearance. She carefully performed the solubility test, then proceeded with Molisch’s test, Fehling’s test, and Tollen’s test. The results were unmistakable. The violet-colored ring of the Molisch’s test and the silver mirror formed in the Tollen’s test were almost beautiful, shimmering under the laboratory lights.

Satisfied, she stood in line to report to the professor. She had gone over the procedures in her mind, confident in her explanation. But when it was her turn, she lifted her first test tube—and her hands began to tremble.

The professor, seeing her struggle, didn’t press her for answers. Instead, he simply asked for her roll number and the compound she had identified, then sent her away.

Salma walked back to her seat, her heart sinking. She should have been relieved—she wasn’t questioned, she wasn’t embarrassed—but all she felt was rage at her own hands.

She wasn’t nervous.

So why did her hands betray her?

That afternoon, she lay on her bed and cried herself to sleep, hating her body for refusing to stay silent. She imagined her hands trembling even in death—as if they wouldn’t stop until the whole world knew her story. Until everyone understood what she had survived.

But was it truly her fault?

No.

Her tremors weren’t a sign of weakness, but the lingering effects of survival. The culprit was Tacrolimus, the very drug that kept her transplant safe. A powerful immunosuppressant, Tacrolimus disrupted calcium signaling in neurons, causing them to fire excessive, uncontrolled impulses, leading to hand tremors and neuropathy. Years of kidney failure before the transplant had also exposed her brain to uremic toxins, altering neurotransmitter balance in ways that couldn’t be undone overnight.

And then, there was the adrenal connection. The kidneys sat close to the adrenal glands, which controlled stress hormones like adrenaline and noradrenaline. The trauma of surgery, the long battle with CKD—something in her autonomic nervous system had shifted, making her body overreact to stressful moments.

The tremors weren’t hers to control. They were the silent echoes of everything she had been through.

And yet, here she was. In a lab coat, performing experiments, building a future.

Her hands trembled, but she was steady.

Her body still carried traces of her past, but she was moving forward.

And that, more than anything, meant she had already won.#chronic #renal #diagnosisjourney

Hi everyone! I am new to this group. I live with Type 1 diabetes, hypothyroidism, anemia and chronic kidney disease. I also have anxiety as a result of living with these conditions. Consequently I am exhausted most of the time and struggle to accomplish things in my life. Nice to meet everyone and hear everyone’s stories here.

When my husband was diagnosed kidney disease my life turned upside down. It's also when my health started to really go south. I became a widow 1 1/2 years later. My son and I had to live off the check I received as his death benefits from his dad and food stamps cause I kept getting denied disability. Celebrating holidays just weren't the same nor could be afforded. Then when I got with my torturous abusive ex his Christmas present to me was the first time his hit me. I hate holidays. Even worse my daughter quit having anything to do with me due to my flashbacks. Which also removed my grandsons from my life. She use to invite me over for every holiday, even offering to pick me up. My youngest son moved 45 minutes away but we talk on the phone at least once a week. When I was a kid growing up, families put their differences aside and all got together every holiday. That's what holidays mean to me. Instead I spend them alone. So instead of holiday season; it's depression season for me.

Hi, my name is SomeLady. I'm here because I have a few chronic illnesses and I'm looking for encouragement and support.
#MightyTogether #KidneyDisease #UlcerativeColitis #HearingLoss