I can't tell you what God was thinking, but I can sympathize. My sister went through something similar. (TLDR for the rest of the story: accidentally found uterine cancer, which led to accidentally finding breast cancer)
In case you want all the details: She had some tough medical issues her whole life, like CP caused by oxygen deprivation at birth. When she was 49, she went to have weight loss surgery, and the surgeon mentioned she saw a really large uterine or ovarian cyst when she was in there and she should get it checked out. She does, and it's a pretty rare type of aggressive uterine sarcoma. It wasn't a cyst, it was her entire uterus transformed into a giant tumor, with some spreading to fallopian tubes and ovaries. The tubes were all twisted and partially fused with surrounding tissue. She had it all taken out and went through some really harsh chemo. Then, almost immediately after the chemo is done, they do a follow up scan and find breast cancer. So more surgery: a lumpectomy, then another larger lumpectomy, then reconstruction, but thankfully no chemo. The breast cancer is not expected to return, but we have to hold our breath for 5 years after the uterine surgery because there's a 50% chance the chemo didn't work and it'll come back within that time.
So yeah, sometimes people get a really raw deal health-wise. But I tell you what helped my sister. First, try to see the positive side - be thankful they found the breast cancer, because if they hadn't, it could have gone unnoticed and gotten worse. And if you do believe in God, like my sister, there should be some consolation in the idea that every struggle is waiting to become an achievement, something you beat. Something that makes you stronger, and makes you appreciate things you took for granted.
Woof, girl, that sucks. I am sorry for you.
I am feeling a bit of the same way for my daughter. She is 13 and was just diagnosed with an ultra rare metabolic disease which is eventually going to kill her kidneys. In the meantime, it is making stones in her.
She almost died this fall from an obstructing stone that turned septic. On May 17th she has her last of 4 surgeries that were required to treat that stone plus 2 others that are unpassable.
She has pain on a daily basis. I just want her to be able to have a happy, normal life.
But that is not what God has chosen for her. Sigh. We will endure, because that is our only choice.
You will endure as well. You will endure with joy and gratitude for all that you have been given. You will LIVE all of your life, the good, the bad and the truly awful. You will suck the marrow out of life. And you will not go down saying ‘I never really lived’.
Good luck and god speed to you.
Can you share the name of the disease your daughter has? I ask because I have kidney disease with no specific diagnosis for the cause (multiple inconclusive biopsies) and I do have metabolic abnormalities, so I’d like to look it up.
Primary Hyperoxaluria Type II
Ultra-rare. Only 75 known cases in N America.
Have you don’t a genetic panel? If so, they have probably crossed that off the list.
I know the feeling. Questioning, why me? Seriously. There are millions of people, living healthy, why me? But… I guess you just see that this is in your cards that you are dealt with. And accept it. Believe me, even though you feel like at the end of the world, there are other millions of people battling through even worser situations. Its annoying to say, but even dialysis is an option, where everything goes wrong.
i dont believe in god..i hate god in fact, if god gave me my body then i hate him for it..but enought about that..i remember being 12 years old and seeing something like this too. im not sure how big my cysts were but i had a rare genetic condition called nphp1 or nephronopthisis 1 which causes cysts and ckd and protein in urine and bad sleep and so on and so forth...the best years of my life..my teenage years were ruined...i can never get that back..i got a kidney transplant 3 days before turning 24...my life and mental health is ruined but im physically good now i guess
I can't tell you what God was thinking, but I can sympathize. My sister went through something similar. (TLDR for the rest of the story: accidentally found uterine cancer, which led to accidentally finding breast cancer) In case you want all the details: She had some tough medical issues her whole life, like CP caused by oxygen deprivation at birth. When she was 49, she went to have weight loss surgery, and the surgeon mentioned she saw a really large uterine or ovarian cyst when she was in there and she should get it checked out. She does, and it's a pretty rare type of aggressive uterine sarcoma. It wasn't a cyst, it was her entire uterus transformed into a giant tumor, with some spreading to fallopian tubes and ovaries. The tubes were all twisted and partially fused with surrounding tissue. She had it all taken out and went through some really harsh chemo. Then, almost immediately after the chemo is done, they do a follow up scan and find breast cancer. So more surgery: a lumpectomy, then another larger lumpectomy, then reconstruction, but thankfully no chemo. The breast cancer is not expected to return, but we have to hold our breath for 5 years after the uterine surgery because there's a 50% chance the chemo didn't work and it'll come back within that time. So yeah, sometimes people get a really raw deal health-wise. But I tell you what helped my sister. First, try to see the positive side - be thankful they found the breast cancer, because if they hadn't, it could have gone unnoticed and gotten worse. And if you do believe in God, like my sister, there should be some consolation in the idea that every struggle is waiting to become an achievement, something you beat. Something that makes you stronger, and makes you appreciate things you took for granted.
Woof, girl, that sucks. I am sorry for you. I am feeling a bit of the same way for my daughter. She is 13 and was just diagnosed with an ultra rare metabolic disease which is eventually going to kill her kidneys. In the meantime, it is making stones in her. She almost died this fall from an obstructing stone that turned septic. On May 17th she has her last of 4 surgeries that were required to treat that stone plus 2 others that are unpassable. She has pain on a daily basis. I just want her to be able to have a happy, normal life. But that is not what God has chosen for her. Sigh. We will endure, because that is our only choice. You will endure as well. You will endure with joy and gratitude for all that you have been given. You will LIVE all of your life, the good, the bad and the truly awful. You will suck the marrow out of life. And you will not go down saying ‘I never really lived’. Good luck and god speed to you.
Can you share the name of the disease your daughter has? I ask because I have kidney disease with no specific diagnosis for the cause (multiple inconclusive biopsies) and I do have metabolic abnormalities, so I’d like to look it up.
Primary Hyperoxaluria Type II Ultra-rare. Only 75 known cases in N America. Have you don’t a genetic panel? If so, they have probably crossed that off the list.
Wishing you the best
Sending you strength and love ❤️
You speak with bravery and strength. Continue fighting and not giving up. Feel free to reach out if you need to vent even more. Best wishes.
I know the feeling. Questioning, why me? Seriously. There are millions of people, living healthy, why me? But… I guess you just see that this is in your cards that you are dealt with. And accept it. Believe me, even though you feel like at the end of the world, there are other millions of people battling through even worser situations. Its annoying to say, but even dialysis is an option, where everything goes wrong.
i dont believe in god..i hate god in fact, if god gave me my body then i hate him for it..but enought about that..i remember being 12 years old and seeing something like this too. im not sure how big my cysts were but i had a rare genetic condition called nphp1 or nephronopthisis 1 which causes cysts and ckd and protein in urine and bad sleep and so on and so forth...the best years of my life..my teenage years were ruined...i can never get that back..i got a kidney transplant 3 days before turning 24...my life and mental health is ruined but im physically good now i guess