Overwhelmed and in need of advice

Hi, my name is Kat. I’m 34 and was diagnosed with LPHS a couple months ago after a biopsy revealed thin basement membranes — and seemingly every other test known to medical science showed nothing more telling than “hey, there’s lots of blood and stuff in your urine.”

I’ve had severe flank pain radiating from my right kidney to my groin for over a year and have been peeing blood and/or sludge about 75% of the time for eight months. It’s been a scary, frustrating road to diagnosis, and treatment is still elusive; I cannot take an ACE inhibitor because my blood pressure is on the low side of normal. So if I do not have to be anywhere that day, I take marinol or make use of my California Cannabis Card. This is not optimal. I’m behind on everything. Sometimes I feel like I’m losing my mind with the stress and the pain. My husband is absolutely wonderful, patient and kind, and I’m very happy and grateful for his support. But I know that this is very difficult for him, as well. I don’t know how to fix these things.

A month ago, I had laser lithotripsy to remove a 1 cm stone lodged in my left ureter. The stent was removed a couple days ago and the whole experience was misery-making and I better not have to do that ever again. I’m still in a bit of pain, but I’m no longer having to use products on which I can depend. Not fun. My husband just told me today that I cried out in pain a lot while sleeping when the stent was in. I felt so sad and worried that he has to listen to that and not be able to do anything to make the pain stop.

My family doesn’t quite get how I’m feeling. Most of my friends don’t, either, and understanding doctors have been few and far between. I’ve been very depressed and anxious (more so lately, but they are long term issues for me). I’m a kidney stone quarry and have been since I was twenty. I have Trigeminal Neuralgia, migraines, and get blood clots. I’m a mess. And often treated like I’m crazy.

On the 23rd, my Dad called to let me know that my grandfather passed away. A few weeks ago he fell on his porch and lay there in the Kansas cold for thirteen hours. He was 77 and already had respiratory issues, but the doctors said he was doing better. Then he suddenly wasn’t. Such a horrible way to go.

The funeral is in Kansas on the 6th of January. I’ve already booked flights and a rental car. But I’m not sure if I can really handle the travel. Does anyone have advice? How difficult will it be to stand in lines and deal with the new restroom restrictions? Am I kidding or underestimating myself? I’m leaning toward staying home and I know my family will be livid if I do. How do you guys handle family and travel?

It’s been rough around here lately, and I’d be grateful for advice!


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