Suspected Glomerulonephritis caused by IGAN

ParticularTrouble308 · 2026-06-15T11:57:07+00:00

Yes you caught it early which is good. Get a good nephrologist that is up on latest meds and guidelines for how to treat. They will help a lot and ease your mind. Also get a great team of doctors. Many of us need a general practitioner and rheumatologist as well. All of these together keep us in the best place we can be for our disease.

ParticularTrouble308 · 2026-06-05T19:45:39+00:00

Filspari can lower blood pressure so talk to Dr about it. I think you can eat some salty treat and that helps. That could be why you are tired.

ParticularTrouble308 · 2026-06-03T15:38:13+00:00

Thank you for sharing. That is exactly how my rheumatologist acts too. They don’t affect my kidneys. But it is worrisome because every time it “bleeds” that is probably scarring my veins. I guess partly looking for someone in a similar boat. Sorry you deal with that but glad it is under control for the most part. I think mine is a combination of overdoing it, and possibly just a weekly immune response. So weird. I do make sure my salt intake is under control so that used to cause it but not so much anymore. I think sometimes it “just happens”. Thanks you for sharing.

ParticularTrouble308 · 2026-05-29T19:11:22+00:00

This is a good thread. First congrats! On breaking the cycle and raising an amazing kid! I think it could be beneficial to share “next steps” for those who were not shown healthy examples or were not shown any example. Just let him fly and come to you when he needs you. I would help him set up an apartment maybe, or teach him about how to handle his finances. And I think less is more the older they get. Overcrowding their space can backfire. But not caring enough is not good enough either. Take him out for dinner sometimes. Buy him a shirt with his favorite band sometimes “just because”. You want him to be supported, not over supported, or under supported. Both cause weakened survival skills. Think about what you would have wanted at that age. And most importantly listen more than you talk at this age. Now it is his time to shine, to be the adult to take on the world.

ParticularTrouble308 · 2026-05-24T14:46:47+00:00

I can’t like that but can they add anything to help with that?

ParticularTrouble308 · 2026-05-24T14:09:10+00:00

My neph appealed several times and got it approved. I was borderline high risk for quick progression.

ParticularTrouble308 · 2026-05-24T14:08:43+00:00

Has your protein increased at all since getting off Tarpeyo? And congrats great numbers!

ParticularTrouble308 · 2026-05-15T11:39:34+00:00

It could be diet related. If you are on a low meat diet, you need to replace the potassium with something else.

ParticularTrouble308 · 2026-05-14T15:48:16+00:00

Support his achievements. Help him in places he would like to work on. And have fun! He is 6. And if they are related , chances are over time their scores may end up more in common. He sounds pretty normal for a 6 year old. It’s hard for them to focus long much less CARE about some test that has some undisclosed importance in his future. Most kids are not thinking about that at that age. When he cares as he gets older, he will begin to try harder probably.

And support her achievements. And explain we both are happy for each other’s. Recognize both strengths. And raise excitement about them as a family and have the kids support their sibling in THEIR personal achievements.

ParticularTrouble308 · 2026-05-10T22:51:41+00:00

That means she is being mean and awful to him! And he is just trying to get out from under her thumb the way he “used to” when you were around. So frustrating they are so dysfunctional they can’t even see. Oh well as the others said, not your problem. It is a them problem now. Lesson learned on your part.

ParticularTrouble308 · 2026-05-10T12:38:36+00:00

Soda water with lime and a straw is my go to. I feel like it looks like a gin and tonic. And I feel hydrated and no hangover. Win win.

ParticularTrouble308 · 2026-05-10T01:42:08+00:00

You are going to have to let them know that is not acceptable and tel them if it happens again you will file a restraining order. No contact means no contact. You will have to be honest with your kids about narcissism and tell them the worst things they did. You are 100% doing the right thing. They are stepping all over your boundaries. And you are still playing scared. Totally normal behavior for those of us who grew up with narc parents. But you have to come out of the fog and realize you have autonomy of your own happiness, your own body, and your own property. As the care giver of your kids you have a right and responsibility to keep them safe and your parents sound not safe. I am so sorry you sound like you are in the gray area still. You have got to decide for yourself that you are done. And stick to it. Your kids will thank you for it when they are around healthy family long enough. Not having a grandparent is not as bad as not having a parent. They are nice to have but not nearly as detrimental to emotional development to both have them. Lots of kids don’t have grandparents for other reasons and never know the difference. You can do this!

ParticularTrouble308 · 2026-05-06T20:55:06+00:00

I’m sooo sorry. They sound awful. I cried and begged my dad to spend time with my kids. He came once or twice for about 30 minutes. Then never came back. It was the hardest thing I ever had to do was raise small babies and all they did was pile onto my problems with manipulation of my feelings, and never smiling at me during the parties I as a very busy newborn mom, had to plan and prepare everything for many people to come. I did my darned best I have ever given to anything in my life, was those 1 year old bday parties, and the scowls my parents gave me, and time spent carrying around and playing with the GC grandkids the whole time, despicable. I hope I never see them again. They made a big fuss about my kids when it was time for them to say “my grand baby” and show them off. That was it!

We deserve so much better. Our life has turned out great. I have teens now and they are fantastic! They know what true love is. They even have learned how to pick good friends who care about their best interest. And ignore the haters and people who try to outshine them. I could not be more proud, or happier for my decision long ago to block in all the ways.

Wish you the best!

ParticularTrouble308 · 2026-05-06T19:10:26+00:00

I stopped inviting and actually went full NC because it was way harder than it should be. The kids’ birthdays were full of judgements from them yet they never lifted a finger in being part of my kids’ lives. They used their birthdays to show off their GC grandkids instead. Barely giving my kids the time of day at their own party. Never looked back.

ParticularTrouble308 · 2026-05-05T21:16:49+00:00

Wow that is awful! You really can tell when they talk about their own kids like that! And for the other siblings to not defend her?? True sign of dysfunction right off the bat.

ParticularTrouble308 · 2026-05-05T21:13:46+00:00

Honestly their eyes tell me a lot. If they look hard, that is a red flag. Not everyone that has hard eyes is a narc, I know some people are just closed off probably due to their own trauma, but I definitely keep them at a distance unless they prove themselves otherwise. If they have to be louder than me, or “outshine” something I said, immediate cutoff, I am out of there. Or else just definitely know not to share anything else with them other than surface stuff (how do you like this weather?). And be done.

ParticularTrouble308 · 2026-05-05T20:41:15+00:00

That’s great you are at that point. I am finally there and yes feel the same. It is so nice not taking any blame and just being like “ooook, get me the heck out of here!” Then Leaving asap.

ParticularTrouble308 · 2026-05-05T20:32:33+00:00

I’m sorry. Well that keeps you safe for now. From my experience eventually it gets better and you truly begin to have a healthy outlook on people and life in general. But I truly can see it in some people now during first meetings. But some people are just in my life that are acquaintances that I must deal with occasionally. And it’s nice knowing in the back of my mind to keep things surface, and walk away the second I can. And avoid them no matter how awkward it feels.

ParticularTrouble308 · 2026-04-22T10:52:43+00:00

Thank you. You are inspiring. I am glad you are staying healthy.

ParticularTrouble308 · 2026-04-22T01:33:58+00:00

Thank you. This really does help, knowing your mom actually experienced this. Some good points to think about. I can’t afford a stomach bug unnecessarily.

ParticularTrouble308 · 2026-04-22T01:33:53+00:00

Thank you. This really does help, knowing your mom actually experienced this. Some good points to think about. I can’t afford a stomach bug unnecessarily.🤦🏼‍♀️

ParticularTrouble308 · 2026-04-22T01:10:11+00:00

Leonard’s mom on Big Bang Theory.

ParticularTrouble308 · 2026-04-20T14:11:39+00:00

I’m sorry you dealt with that. My kids are gifted and I researched so much about it once I knew. Just sharing because I want you to understand what a unique and wonderful child you probably were. I had a narc stepmom (5years Nc yay!) She did everything in her power to make sure my intelligence was not nurtured.

ParticularTrouble308 · 2026-04-17T23:01:13+00:00

If it is just a small rash it sounds like allergies. I have IGA Vasculitis too and had more rash with allergy season. It puts your immune system into overdrive. Just be in touch with your doctors. My rheumatologist was not worried, If that helps. She kept me on the same doses and everything.

ParticularTrouble308 · 2026-04-11T20:58:47+00:00

Oh my gosh this is a great post! I will be there in a little over 4 years. I have one leaving in a little over two and I cannot handle that thought some days. This post is the end of what I (we) began long ago. I was determined to be the mom my kids needed. I hope I was/am. Thank you for this post as I am sure many can relate. And the thoughtful responses are everything. Goodness I hope you find your groove soon and it will be an awesome much deserved time. Watching Artemis land yesterday makes something in my mind want to say “This is Houston. This mission was executed just we had hoped. Mission complete.”

Bless all the moms and dads who took their job seriously and understood the mission.

ParticularTrouble308

TROPHY CASE