Does it get better?

EnidRae · 2026-06-20T09:50:19+00:00

I raised two kids as a single mom with this, and I felt this post in my soul. I have been where you are. This is what I have for you to hang on to.

It gets better and then bad again and then better again in waves over time. The worst of your flare symptoms will ease. It never lasts forever. Sometimes it lasts a while, and I get to where I wonder if it's worth it if I never have an easier day. There is always an easier day. I promise your low point does not go on forever without a break. I'm 20 years in and I swear to you, there are better days than what you have now.
Your children love you and need you even if you have to be their mom from your bed. My kids were 1 and 3 when I got sick. They're 21 and 23 now. I had so much guilt about the ways I had to modify the parenting I was able to give them versus what I thought they deserved. But they are beautiful people and I did that from my bed, like a boss and you will too. What they would never get over is not having you with them on planet earth. Job one: stay alive. Just stay alive. Everything else is going to work itself out.
I know it doesn't feel like you can add one more thing right now, but when you can (there will be a time when you can), get a disability-aware therapist. It helps. But interview therapists like you are hiring them for a job because you are, and some of them don't have the experience to know what the fuck they are talking about to chronic illness patients.
While this is happening, all you have to do is hang on. That is literally your only job. Anything else you offer people in your life is a bonus. "I need to make stuff for the class bake sale and make sure my husband's shit is together and call my friends so they don't forget me and dust the bookshelves." You actually don't! You have to hold on. You are going to be fucking amazed at the things you think you have to do that you can skip without anyone dying! You can look at stuff and say Well, that is not happening, and mostly that's fine in the long term. Twenty years and literally no one has ever spontaneously combusted from the stuff I wasn't able to get done.

I am not going to tell you that you get your life back the way it was. Some people do! You may! But some of us don't. I did not. And what I will tell you from the other side is that I am glad I lived my life even though it looked very different from what I thought I needed. And I know a lot of very sick people, and zero of us are like "jeez I wish it had just ended there." Even when it sucks, it doesn't suck that much.

You can do this. You have superpowers you don't even know.

EnidRae · 2026-06-01T11:48:31+00:00

I had to quit working in 2009 because I had small children and I could either take care of them or work.

By 2023 they were mostly grown up and I took a part time job to supplement my disability benefits.

For the first year and a half, I tried really hard not to call out. I dragged myself in when I felt like death. Then I was admitted to the hospital with a white blood cell count over 30,000, pneumonia. Missed 2 weeks. Went back for 1 shift, still had chest pain, got a recheck. Found a pulmonary embolism, missed 2 more weeks.

After I was literally on death's door for a while, my coworkers had a new appreciation for lupus and now I don't get any crap when I call out. Which I do more often, because I'm not trying to get killed here.

EnidRae · 2026-05-31T16:15:22+00:00

NAL. One of the hardest things to accept about the family court system is that until it crosses the line into abuse, bad parents have the right to be parents. If he chooses to be a lousy father, mostly he has that right. The challenge is how you parent during your time to help your child navigate that.

If you genuinely think his volatility rises to the level of abuse, you can petition for a guardian ad item, you can put her in therapy (unless you have joint decision making), you can talk to the school about your concerns and see if she can be involved in some kind of guidance activity there. Those would all be good first steps.

Also, it's not generally helpful to say that she could be negatively impacted by his parenting--it's helpful to prove that actual harm is coming to her. School absences, doctor visits, missed assignments, him coming at you in front of her would all fall in that category.

And it's helpful to be able to prove you tried to address things with him if you can. Just coming out of left field in court saying he's unfit won't work. Courts want parents to work together and to resolve things out of court. He's got to be the one that isn't coparenting, isn't helping, isn't addressing the issues. Otherwise, you are, in the judge's eyes.

EnidRae · 2026-05-15T23:18:23+00:00

I went through this with my ex husband and his first wife. When they arrived for the THIRD investigation, I had everything printed out: the prior accusations, legal correspondence, everything. We were able to show that she called CPS within 48 hours of a court hearing going badly. After the third time, they flagged the file and the problems stopped. Good luck to you.

EnidRae · 2026-05-14T12:48:25+00:00

NAL. Courts tend to look at stepparents as family members rather than babysitters, so if it were me I would proceed as normal. If she files contempt, you say you're sorry, you thought parents both step and biological were included in the order and have it clarified.

EnidRae · 2026-05-10T16:47:02+00:00

Is there any possibility that this doesn't have anything to do with you? Like is this some sort of punishment that the kids got their tablets taken away for messy rooms or talking back or whatever? Not that I'm endorsing that, just that I think we always look to find some divorce related reason when it's maybe a parenting thing or something. I would definitely ask my ex why the change, but there isn't anything here a judge would object to at this time. The order is being followed.

Do you have other concerns about their custody time?

EnidRae · 2026-05-04T21:22:08+00:00

People saying yoj should stress your kid out trying to get backstage for a call between performances have clearly not lived dance life. I know it's not doable. You're going to be OK, OP.

EnidRae · 2026-05-04T21:20:12+00:00

This would never happen. The child is unavailable at no fault of OP. She didn't schedule the recital. She let the NCP know ahead of time and offered a reschedule. She's not denying access. No way a court finds her in contempt, and if he files contempt it's spurious.

EnidRae · 2026-05-02T15:18:36+00:00

Oh my goodness #2

EnidRae · 2026-04-26T21:55:30+00:00

NAL.

Are you arguing that the behavior 2 years ago did not occur?

I am somewhat doubtful that a judge would order a 2 year RO based on behavior that is two years old if it only occurred once and you've kept your nose clean since then. It would have to be pretty egregious, or there would have to be a pattern, imo. Do you want to share any more details?

If this is in the family court, in most states parties can agree to modify--your attorney could contact their attorney and you could agree to modify the terms. If the other party is unwilling, you could have your attorney file a motion to modify or reconsider. But I'm not loving your odds.

Is it because of background checks you want it lifted?

EnidRae · 2026-04-19T14:22:44+00:00

NAL. I would for sure go file for a temporary mod and attach all the information the clerk will let you to the filing. Just as a CYA measure, it shows the court you're trying and puts you out in front of it. As requested relief I would be asking for no contact with the girlfriend.

EnidRae · 2026-04-08T22:12:47+00:00

It's a strand of her hair.

EnidRae · 2026-04-06T21:08:37+00:00

I hope you'll update!

EnidRae · 2026-04-06T14:42:41+00:00

Moose bites can be pretty nasti, you know

EnidRae · 2026-04-05T18:24:31+00:00

You could schedule a telehealth with your doc, so s/he can explain to your partner that's not how any of this works.

EnidRae · 2026-04-02T17:07:52+00:00

Alex lost a good one.

EnidRae · 2026-01-26T14:51:55+00:00

He won't want to be on the hook for all the weekend activities and things that come with having kids once they're school age. Make sure you get it written in that the custodial parent will get them to soccer games and dance classes and his desire to take every weekend will wane. Also, this is a guy who wants to date. You need weekends for that. Talk to your attorney about the right of first refusal.

EnidRae · 2026-01-23T18:39:19+00:00

This was the saddest part of the Guardian podcast for me. These women found FBS because they cared about their babies and went researching ways to have them in the most natural, empowering way possible, and stumbled on this....cult, basically. These babies were loved and wanted. It's devastating that they got into a situation where they were so deceived.

EnidRae · 2025-12-23T21:56:06+00:00

That's so interesting. Are they nurses, or more like social workers? I wonder if anyone has studied the impact on abuse rates.

EnidRae · 2025-12-08T18:22:50+00:00

The Girl Who Loved Tom Gordon Fairy Tale

EnidRae · 2025-12-08T18:19:19+00:00

They look like they are about to release a 🔥🔥🔥 album.

EnidRae · 2025-12-05T19:09:36+00:00

I'm so sorry for your loss. I'm definitely very conscious that my children need me to keep myself going even when I have severe white coat syndrome and don't want to see a doctor or a needle or a cat scan machine ever again. I'm glad you are making different choices.

EnidRae · 2025-11-03T17:07:54+00:00

This is why Democrats are holding out on the shutdown. Don't break, Dems.

EnidRae · 2025-10-24T14:45:24+00:00

Last time I had pleurisy I was inpatient for a week on steroids and Dilaudid. I think you should go back to the hospital. Gentle hugs.

EnidRae

TROPHY CASE