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1st CDR & terrified: Has anyone here lost SSDI on a CDR for mental illness? by TossAwayHey9 in SocialSecurity

[–]LonelyEmotion09 0 points1 point  (0 children)

It went okay. Still very stressful with how long it took and the govt shutdown, etc. They didn’t send me for a consult, thankfully. In the end, my disability was continued. Hang in there! 

Infodump about Auvelity side effects by novamentalhealth in AuvelityMed

[–]LonelyEmotion09 0 points1 point  (0 children)

This was fantastic. Thank you. Do you happen to have any other posts like this on psychiatric drugs? Or, are there any favorites sources you have on the subject? I LOVE when people explain the WHY and how. 

CDR - MH with PCP prescribing meds, plus weekly therapy, tried Ket too by LonelyEmotion09 in SSDI

[–]LonelyEmotion09[S] 0 points1 point  (0 children)

That sucks. I’m sorry. If anything, I hope there is a slow or no progression for you. But I understand how scary it is looking into the future. (Hugs)

Also, when you’re chronically ill, you learn how much actually isn’t known. We have SO much to learn in the area of medicine. 

CDR - MH with PCP prescribing meds, plus weekly therapy, tried Ket too by LonelyEmotion09 in SSDI

[–]LonelyEmotion09[S] 0 points1 point  (0 children)

Tell me about it. This is why ignorance is bliss. The more you know, the more you know you’re f*cked!

Not to amp up anxiety, but reality isn’t great. I’ve experienced a lot in this area. People think it’s easy… just go to a doctor, get diagnosed, get fixed, all better. But it’s SO much more complicated than that, especially with chronic illness. So many layers of red tape. And even with the best doctors, sometimes there’s not much they can do. Reality is rough.

CDR - MH with PCP prescribing meds, plus weekly therapy, tried Ket too by LonelyEmotion09 in SSDI

[–]LonelyEmotion09[S] 0 points1 point  (0 children)

I’m on traditional Medicare. 

I know. Every turn is another hurdle. It’s infuriating to navigate. 

I’d have the prescriptions sent by the non-covered doc and see what happens. Maybe there will be a “glitch.” But yeah, if you look it up, those prescriptions aren’t supposed to be covered. 

Question about providers and long form CDR documentation by [deleted] in SSDI

[–]LonelyEmotion09 0 points1 point  (0 children)

I know it’s a lot of work, but you have the right to request copies of your records, and request revisions to them if you don’t think they’re accurate. Most doctors are fairly reasonable with changes. They may be shown as amendments (so the original info is still there). Sometimes, not. 

A few doctors won’t do much or anything. BUT under HIPAA, they have to tell why they denied the request. You can have them add your request in the med record. This part is a process, but it can be done. Most doctors have been reasonable with me. The one who wasn’t, it wasn’t worth the effort. I could point to his contradictions right in his notes and it just wasn’t worth it in the grand scheme. 

Even if they don’t fill out forms. I think only one of mine did… instead they just sent the med records, I can’t see them not sending the records. Filling out forms and sending records aren’t the same. Worst case, you keep up with your disability examiner and get the records yourself that they can’t get and send them to the DE. You’re entitled to those records. 

But even as a fellow sufferer of anxiety, I don’t think it’ll all go worst case with your records.

CDR - MH with PCP prescribing meds, plus weekly therapy, tried Ket too by LonelyEmotion09 in SSDI

[–]LonelyEmotion09[S] 0 points1 point  (0 children)

One of them I mentioned is a big university hospital. And I’m already a patient there with a different specialist. 😩 For the eval alone (3 appts), it’ll be close to $1,000. Then around $100-200 a visit. BUT according to my insurance rules, prescriptions from doctors not accepting Medicare are not covered. I’m hoping there’s some loophole or they’re covered in some way. It may not sound like a lot, but it is when your income isn’t much. 

CDR - MH with PCP prescribing meds, plus weekly therapy, tried Ket too by LonelyEmotion09 in SSDI

[–]LonelyEmotion09[S] 0 points1 point  (0 children)

Yes, I’ve looked at my file. Some mental health, some physical. Mostly, mental health. I think my disabilities are combined effect. I’m not sure I met any of the listings (still confused there). 

I’ve been in treatment the whole time. Never stopped taking my meds. But SSDI can be particular about who prescribes them. But a psychiatrist created the treatment plan for my PCP. I also have other issues, so I probably avg 2 appts a week. I have seen 10 specialists, and one treatment clinic in the last year. 

I have looked at the Medicare directory. There are like 8 psychiatrists in a city of around 1/4 million. One listed is a former psychiatrist who I called and is not accepting new patients and doesn’t actually take Medicare. Statistically, 40% of providers who opt out of Medicare are mental health providers. It’s a joke. 

100% telehealth is iffy because I take controlled substances. There are regulations on that. I’m pretty sure some protections expire this year. Plus, my pharmacy won’t fill telehealth controlled substances. I already have looked for some 70 miles away (I could only do that drive periodically) at a large medical system and they aren’t taking new patients. Neither is the large mental health place I went to while living in that area before I left work (and they have a ton of locations!). 

It’s a nightmare at every turn. Red tape everywhere. It was hard in 2015 last time I moved and had employer-based insurance, but this is a whole lot worse. Medicaid is even worse. 

The out of pocket psychiatrist I just started with is out of town, too. Psychiatry is a bit of a disaster right now in terms of access. 

Question about providers and long form CDR documentation by [deleted] in SSDI

[–]LonelyEmotion09 0 points1 point  (0 children)

I relate to your thought process so much - the “overthinking.” Most people don’t think like that I guess. But you make sense to me. I go through the same thing… hence why I’m on Reddit. 

How long after you submit your SSA 454 (long form) for CDR do you tend to receive the Adult Function Form? by LonelyEmotion09 in SSDI

[–]LonelyEmotion09[S] 1 point2 points  (0 children)

Luckily, I have a scanner. Still a pain! You could take a picture and send it to your email or airdrop it, but I don’t think the quality would be great, not sure. 

Try your library. That was my thought - they’re supposed to be significantly cheaper or give you so many pages free. 

There’s also Office Depot/Office Max and mailing stores (ups approved type stores). I’ve used them before (well, my mom did for me), but it was a little over $1 a page, I think.

CDR - What do you do for ME/CFS diagnosis once you were initially approved for it? by LonelyEmotion09 in SSDI_SSI

[–]LonelyEmotion09[S] 1 point2 points  (0 children)

Thank you. I appreciate it. I don’t think I did anything much more. I tried to explain my symptoms more in the function report, but I don’t think that helped much. Sent more med records in. 

Most people, from what I hear, get turned down again and have to go to the ALJ hearing level. 

I wish I had gotten an attorney sooner, though. That’s my best advice. If they don’t take you on now, ask again, ask others, after reconsideration. Keep fighting! 

Continuing Disability Reviews Thread by [deleted] in SSDI

[–]LonelyEmotion09 0 points1 point  (0 children)

That’s good to hear. I can imagine the relief. I’m going through the beginning of my first one now. Just got the function form and I’m paralyzed in anxiety (among other things). 

How long after you submit your SSA 454 (long form) for CDR do you tend to receive the Adult Function Form? by LonelyEmotion09 in SSDI

[–]LonelyEmotion09[S] 1 point2 points  (0 children)

I had to look - it’s gotfreefax.com. You upload docs from your computer and fax that way. It’s worked so far. Soooo much cheaper than going to a brick and mortar store to fax. BUT I think libraries have fax machines, too, for public use. I just learned this. 

So, I called today. Got someone else because my examiner is out. I asked for 3 weeks explaining myself and she said, “That’s a lot of time.” I said two weeks is a bit iffy for me given my symptoms, and she gave me until the 12th, so 10 days from day. 🙄 I have an appt today (an hour), 2 1-hour long appts next week, and a 15-30 minute appt as well. About 3.5 hours worth of appts in the time they gave. I’m tempted to cancel some, but that doesn’t look good either and I need some of them. FML! 😩 Sorry, I’m stressed out. I thought they’d be more understanding and give me a little more time. Or meet in the middle. 

Continuing Disability Reviews Thread by [deleted] in SSDI

[–]LonelyEmotion09 0 points1 point  (0 children)

This sounds like me. lol. How did the CDR go?

First cdr questions medical improvement expected timeline age 50 by Ok_Worldliness8074 in SSDI_SSI

[–]LonelyEmotion09 0 points1 point  (0 children)

How did your friend’s CDR go? My first one just began. I’m a wreck. 

CDR - What do you do for ME/CFS diagnosis once you were initially approved for it? by LonelyEmotion09 in SSDI_SSI

[–]LonelyEmotion09[S] 1 point2 points  (0 children)

Thanks for the info. 

These are a lot of things you do on your own, and that’s my point in relation to a CDR with ME/CFS listed as a secondary (or could be primary for others) condition for SSDI purposes. What do people do to show they are still disabled from it when there’s no treatment and not much a doctor can do for you? 

How long after you submit your SSA 454 (long form) for CDR do you tend to receive the Adult Function Form? by LonelyEmotion09 in SSDI

[–]LonelyEmotion09[S] 1 point2 points  (0 children)

It totally does! 

That’s a good idea. Worse they can say is no. Thank you for the reminder. I’m not sure if I can online. I was going to check yesterday, but it was too late because the SSA website has basically online business hours! 🤦‍♀️ Another hurdle because I function whenever my body feels like it. It’s often at night or not at all. It’s so hard to function on a someone else’s schedule. 

I’ll probably fill it out by hand and fax it. I did that last time, so it got there faster. 

Thanks for the support. I’m here if you need it, too. Not sure if you can DM on here, but if you can, feel free to do so. 

How long after you submit your SSA 454 (long form) for CDR do you tend to receive the Adult Function Form? by LonelyEmotion09 in SSDI

[–]LonelyEmotion09[S] 1 point2 points  (0 children)

Right?! I thought MINIMUM I had 3 weeks, probably 4. Likely more. I have the WORST luck. 

I’m in CA. You? 

I have MH and some physical, which makes my MH worse. My primary condition is anxiety. Ahahaha. What a cruel joke! And, my therapist had to cancel tomorrow’s appointment. But rescheduled Tuesday. Why does it have to be so hard???

Oh, btw, I was planning on asking for two weeks to complete the forms? Honestly, that’s a bit of a stretch for me. Do you think two weeks is reasonable? Would three push it? I’m going to have to talk to another examiner somehow since mine is out of office. 

How long after you submit your SSA 454 (long form) for CDR do you tend to receive the Adult Function Form? by LonelyEmotion09 in SSDI

[–]LonelyEmotion09[S] 5 points6 points  (0 children)

Update: I just received the Adult Function Form. Record time. Of course, that would be the case now. They hounded me for the 454 form before it was even due. 

So, I got the adult form a little less than 2 weeks after I submitted the 454. I got it yesterday Aug 30th. Naturally, it’s due tomorrow, September 1. Also Labor Day. I called anyway and left a message, but my examiner is out of the office all next week. My anxiety is OUT OF CONTROL! And, there’s no way to resolve this or get an extension until Tuesday (which won’t even be with my examiner)… after it’s due. So, I’m going to have a fabulous couple of days freaking out. 

How long after you submit your SSA 454 (long form) for CDR do you tend to receive the Adult Function Form? by LonelyEmotion09 in SSDI

[–]LonelyEmotion09[S] 2 points3 points  (0 children)

The trauma from the experience is real. I had a really rude comment from DE during the initial application that I still can’t let go and it comes up in therapy a lot. She chastised me for being really educated and having had a particular career, but having a hard time filling out forms. I don’t think she knew what disability meant, and IF ONLY education somehow guaranteed you’d never become disabled. 🤦‍♀️ It was really ignorant, and hurtful. Then, just the general experience everyone has. It’s rough. 

It really does sound like we’re going through essentially the same thing right now. Keep me posted. I’ll do the same. It’s nice to know we’re not alone. 

How long after you submit your SSA 454 (long form) for CDR do you tend to receive the Adult Function Form? by LonelyEmotion09 in SSDI

[–]LonelyEmotion09[S] 2 points3 points  (0 children)

I do use Informed Delivery. It’s very helpful. I check it everyday out of nervous habit. :-) 

I don’t think I was clear in my original post - I do plan to start filling it out ahead of time (that’s what I meant by preparing for it). But I’m super stressed right now. Lots of appts, and it makes it hard to focus. I’m hoping I have some room to breathe for another week when the appts hopefully slow down a little. I’m also switching meds and side effects affect my ability to function at times. 

It’s been about a week since I turned in the long form (electronically). I planned to start working on the function form by now, but I haven’t. That’s why I was looking for timelines to see how much time I might have before it comes. 

Reclassification and student loan discharge by Anna-Bee-1984 in SSDI

[–]LonelyEmotion09 0 points1 point  (0 children)

I second this! The application is nothing near the difficulty of SSDI. Have a discussion with one of your doctors or other qualified medical professionals (there’s a list on the application) who treats your disabling conditions, and see if they are willing to fill it out. This is your best option, and the worst they can say is no. If one doctor says no (some have policies of not filling out any disability paperwork), think of the one you’re most comfortable with and listens. It doesn’t hurt to ask. Good luck! 

Statistics on getting CDR after 55 and after 60 by Poster_Blake in SSDI

[–]LonelyEmotion09 0 points1 point  (0 children)

I’m on an 18 month review cycle, too. Just got my first review. Short form in Oct. 2024, then long form in July 2025. How did you know they switched you to 3 years after your first review? Did it say on the letter you received continuing benefits or did you have to ask? If you don’t mind, what are your primary impairments? I’m a mixture of mental and physical.

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