New to the group
Hello everyone. I've been living with PKD for a long time. I was diagnosed as a pre teen and remained symptomless until my mid twenties. I'm nearing my mid thirties now and still in stage 1 but the size of my cysts are so debilitating. They just keep getting bigger no matter what I do. It's hard to move, period. :/ Because of my kidney function being so excellent I am just advised by my doctors to keep doing what I'm doing: eating as healthy as I can, sticking with the herbal remedies I use along with my medication (lisinopril), and not pushing myself to go beyond my limitations. I also have intractible epilepsy but my seizures have decreased drastically (thankfully!) over the years. There are moments when I just can't take the constant pain, discomfort, nausea, etc. that comes with PKD and that's when I reach out for support. I'm blessed to have a wonderful husband who takes care of me without complaint, is my best friend, and the greatest person I know. He encouraged me to seek others with PKD since my list of friends has dwindled so much over the years. Many don't understand and I feel like those who have stuck around may be be doing so out of guilt. I know everyone who lives with this can relate to how I feel. There are days I feel like an alien, or like a carrier of aliens since my cysts are weird little foreign sacs, walking around in a world I don't belong in because of my illnesses and limitations. I have trouble reminding myself that's not the truth sometimes, even though I like maintaining a positive attitude as best I can. I'm looking forward to connecting with you all. Thanks for reading.
I need to know about other's experiences with mental function as their kidneys decline because yesterday I got so confused, could not think clearly. I dont' take any pain med on a regular basis, generally take hydro morphine when I have significant pain but that is rare, 3 times in last 2 months. Did have anesthesia early May but I'm thinking, based on my recent experience, that along with the...
I am new to this group. I am a 60-year-old female with PKD and PLD. There are many things are doctors never think to tell us and many things we can only learn from other suffers. Right now, I am concerned about my expanding ribcage. I am petite and short-wasted so crowding is definitely been an issue for me. However, I've never heard anyone complain of their rib cage sticking out and I am...
Does anyone have suggestions other than medication or therapy to help decrease anxiety? My anxiety gets triggered by job stress, people, finances, relationships etc
I was the designated scapegoat in my dysfunctional family system from childhood through age 52 as an adult, so I know the bitterness of unfair dysfunctional family disappointment. I was an honors student when I lived at home, and when I went to college I got a rare Fulbright Scholarship which would have made any parent proud. But I got nothing but criticism and ridiculous attacks on my...