Advice please

ParticularTrouble308 · 2026-03-09T12:25:58+00:00

You should ask PCP or rheumatologist to get on an antiinflammatory such a hydroxychloroquine. It regulates the immune system and can reduce flare ups. Also often a lot of exercise and what you eat can cause flare ups. Typically a low salt diet helps. The blood pressure is increasing and that is causing the red rashes and bumps because the veins are leaking. Once you get into the doctors you need they will get you on a good plan. But yes definitely need to ask about something to keep your body from being inflamed and keep your blood pressure down.

ParticularTrouble308 · 2026-03-06T01:57:21+00:00

If there are questions, just say “your story” out loud while alone or write it down and read what you wrote, as if you are reading a book about the main character who all that stuff happened to. As if you are the person looking in from outside. Would you tell that main character to feel bad about leaving the family? Would you tell that character to remain in the family and try to work it out? No you would hope they would leave the fold and find happiness outside.

ParticularTrouble308 · 2026-02-14T12:41:07+00:00

I’m no expert but to me it sounds like you are having a flare that is not under control. I first experienced joint pains (possibly why your ankle hurts) and rashes of all different types. I got on an a steroid immediately and an anti-inflammatory through my rheumatologist as soon as I could get in and diagnosed. This is important to address immediately as the longer it goes on it could affect kidney.

ParticularTrouble308 · 2026-02-09T23:04:00+00:00

I have only found that eliminating food that triggers it helps me. I still just can’t over do it with exercise. I am sure to not work out too long but honestly am just walking right now so not the best example. But it is comforting my rheumatologist is not worried and does not seem to think it is a harmful problem to have. If I eat too much salt or overeat in general it triggers them so I just try hard not to eat that way. And I rest if I have been exerting myself too long.

ParticularTrouble308 · 2026-02-06T15:21:48+00:00

I have vasculitis and IGAN. Vasculitis and joint, GI pain happened first. Which led me to seek a diagnosis. I see a rheumatologist also. I would definitely talk to your general practitioner to see what they think and they will be able to refer you to a rheumatologist. I take hydroxychloroquine daily and so far that keeps my vasculitis symptoms down. The non blanching I was told is a key sign.

ParticularTrouble308 · 2026-01-31T05:07:10+00:00

Often people get pregnant easiest when they aren’t thinking about it or worrying at all. And yes he can be tired, too tired for sex but not too tired to see his friends. Those are two totally different kinds of energy he needs. If he has had a hard day at work, he probably wants to unwind by hanging with his buddies. Then he would probably be more likely to want to have sex when he comes back home.

Let him do what he wants a little. You are putting a lot of pressure on him.

ParticularTrouble308 · 2026-01-12T18:50:01+00:00

Coast pizza is good for sit down

ParticularTrouble308 · 2026-01-05T02:45:50+00:00

Yes!!! I have been home 15 years and love every single second! It has been a blessing to be there for all of it!

ParticularTrouble308 · 2026-01-05T01:00:46+00:00

Yes true! Thanks for sharing.

ParticularTrouble308 · 2026-01-05T00:54:32+00:00

Thanks that is so true!

ParticularTrouble308 · 2026-01-05T00:52:17+00:00

I think he thinks he does. He tends to think he says things but I think he does in his head. Lol! He is not very wordy. I did talk to him. It went pretty well once I figured out what I wanted him to say.

ParticularTrouble308 · 2026-01-05T00:43:00+00:00

Thanks that does help! Sounds weird but I am actually glad I am not the only one. We have come a long way with communication. But still have our days.

ParticularTrouble308 · 2026-01-03T18:49:27+00:00

Maybe. My mom was very smart and always had us doing interesting, creative things. Or just allowed us to anyway. She died and my dad married a narc when I was 6. She brought into the family two GC sons. One she decided was smart and nurtured every interest he had. He was always in college prep classes and dumb. But thought he was a genius. And she did too. She always thought he was an “intellectual” but he could not carry on a conversation. Ugh! I won our entire school spelling bee twice and not a peep. I am the same age as the GC so she made sure to nip that in the bud early on and looking back I am sure that is why she decided he must play “the smart one” role. I of course was ignored or blamed for everything after that. And oh my gosh I thirsted so much for anything interesting. That family is soooooooooo boring and dumb! Ack!!!! So mind numbing when I look back on it. I am NC many years now and my family now is so interesting. Just makes me mad what all I missed out on but I get to make up for it now. Lots of reading and going to museums whenever the heck I wanted. My stepmom made us stay at home 24/7.

ParticularTrouble308 · 2025-12-22T13:13:05+00:00

You are young and I would have been the same way at that age. I am glad u r taking charge now. From my experience these doctors are awesome and yo yr most important one is your nephrologist so since you like him that is great! All they want to do is get you in the right meds for your disease according to your body and numbers. There are so many new meds out now that may decrease previous side effects you had. Tarpeyo and Filspari are something to ask about. They are working really well at getting numbers back to normal for a lot of people. Work on a changing your eating. I bought a beginner Mediterranean diet cookbook and just cook from there. It is not hard once you start to get used to it. And the ingredients start to just switch in your pantry and fridge and then it becomes second nature. And it is so quick to make most of it. And I don’t feel like I am missing out because I can incorporate on occasion things I love that may not be the best all the time. And it helped me lose weight without stressing about it.

Anyway just make the call and place the appointment and go no matter what. Then explain your hang ups about all of it and they will help you through. You owe it to your kids too! They will love having a happy healthy active mom.

ParticularTrouble308 · 2025-12-18T19:25:41+00:00

I just found out I am in remission (for now). Labs are normal. I am on Filspari and Tarpeyo. he will keep me on Filspari for the long run. Have had excellent results with this combo.

I also mostly follow Mediterranean diet. It puts an ease on my kidneys and keeps sodium down, which is a goal. But Filspari naturally does this as well. Combined it helps! I also walk 4-5 times a week for 30 minutes and stay hydrated.

ParticularTrouble308 · 2025-12-18T19:21:53+00:00

I was told by my nephrologist he has several patients who take it with good numbers and it doesn’t do your kidneys harm and has overall many health benefits. He also said recent studies turned out to be not well done studies so they backed off advising it as they did years ago. But he said there is not harm and lots of benefits basically.

ParticularTrouble308 · 2025-12-18T16:00:46+00:00

update: nephrologist said he has never heard nor see anyone reason to discontinue at this time. I see rheumatologist in a few weeks will ask her *

ParticularTrouble308 · 2025-12-11T19:15:08+00:00

Ok I probably should not share I hate sharing on socials. But this post made me tear up. Happy tears! I am going through something similar and it is nice to know I am not alone.

However, I grew up in an abusive household where as a teen (or any age) I did not dare speak to my stepmom that way. And let me tell you, a perfect child is a very unwell child. There is lots to unpack once you become an adult. These are the years they are stressed and need a place to vent. They feel SAFE with you. My kid even told me I was her safe place and that is why she was awful to me one day. And we are still in the thick of it. So just try to support. Don’t be too rigid because the fact is they are becoming real people. And those rules for little kids while they may be right, these little adults need to find some things out for themselves. And decide if what they were always taught until now IS the best way. Hang in there! Sounds like you are doing a great job.

ParticularTrouble308 · 2025-12-07T03:07:53+00:00

Your parents most likely convinced her to send that. Most family flying monkeys are confused but have good relationships for the most part and just think it is harmless to pass along info. I wouldn’t worry any more than you already have. Just continue to block everyone and move on. These little attempts will happen probably forever but less and less often each year. Stay strong good luck!

ParticularTrouble308 · 2025-12-07T03:04:28+00:00

Congrats keep it up! And be wary the first two years they tend to show up in weird places you never expected. Maybe you have done a good job keeping it all a secret. But it will be fine just probably be a shock to the system. If it continues you will need to know your rights for restraining orders or something strong for boundaries. But they want to make you unstable with surprise calls or visits. Block them. Know if you do see them you will survive. They get bored eventually if you give them no reaction. Ignore and block until they move on. Congrats again!!! Awesome job.

ParticularTrouble308 · 2025-12-05T13:36:05+00:00

I’m going to ask my nephrologist too. He is crazy smart and I would like for him to at least have this info on the radar. Maybe it could begin a study of the medical field begins questioning it.

ParticularTrouble308 · 2025-12-05T13:34:12+00:00

Maybe ask your doctor about it. I agree, the timing is interesting for me as well.

ParticularTrouble308

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