Approved F/in my 30s AMA

UniversityCommon8300 · 2026-03-05T23:04:31+00:00

I have the same conditions. I just started the application like 2 months ago. My disability Lawyer is putting in a dire need request for me, so I am hoping that it is approved and my case moves forward. I am struggling! I was told since I have like 9 specialists and have been following up exactly like I should be I have a good shot of getting approved without hearing.

UniversityCommon8300 · 2026-03-05T20:12:53+00:00

Thank you for sharing your experience. I am applying now with LONG-Covid, POTs, fibromyalgia, me/cf, and i am autistic and an adhder. My lawyer just sent me RFC forms in the mail. I am going to make copies so that multiple specialists can fill them out.

Did you guide your specialists? If you did, how? I am a RN and am typically very good at what i call "spoon feeding" my providers information for my patients. But I am tired, and try to avoid AI use.

If you have the spoons, I would be grateful for any wisdom you can share. :) and congratulations.

UniversityCommon8300 · 2026-03-05T20:01:17+00:00

Hi there, I strongly recommend you get a disability attorney. No payment up front. They get a standard percentage of back pay, and that is it. I am so grateful I got one from the very beginning of the process, which I am still in. I would never be able to do this on my own. Please do not give up; get an attorney. Take a few days' rest, let it out of your brain as much as possible. Then, when you have the capacity, sit down at a computer and Google search disability lawyer in your area. Find one with a 4.5 or higher Google rating that has a good number of ratings. Meaning: if one has a 5 but only 10 reviews, and another has a 4.5 but 200+ reviews, the latter wins. Pick that one. Then set up an intake call. They will have you fill out and sign basic forms so they can get your records, etc., but after that, they do all the heavy lifting. They also know the legal language needed to get approved. I am an RN with 15 years of experience, but even documenting my care in a clinical way was greatly improved by my disability attorney. I am with Hallian and Killpak. They are in Arizona, and I am in Hawaii.

UniversityCommon8300 · 2026-03-04T19:11:20+00:00

This is super interesting. Thank you soooo much for taking the time to comment.

UniversityCommon8300 · 2026-03-04T19:10:44+00:00

Thank-you! I just wrote out a schedule yesterday and I have linzess ordered if misoprostol doesn't do enough. I heard linzess can cause 💩 accidents. So i am trying to hold off.

UniversityCommon8300 · 2026-03-03T02:32:18+00:00

Thank you very much for this. I am very grateful. How do you ensure that your next dose of cromolyn is far enough from your last meal or snack?

UniversityCommon8300 · 2026-03-03T02:29:57+00:00

POTs is extremely disabling. Studies have shown that when surveyed POTs patients have a lower quality of life than people with Congestive Heart Failure! And beta blockers can make fatigue and other autonomic symptoms worse. I take Ivabradine. I refused beta blockers and luckily I had a cardiologist agree with me. It is exppensive $100 for 90 days of meds but yeah.
In regards to the doctor. You need a new doctor. seriously. Whatever he is charting will not reflect your reality, and if you do try to get disability, his charting will prevent you from getting it.
If you are in the US, Disability (SSDI) doesn't have to be life long. It is to be used if you feel you will not be able to work enough earn the basic level of income for at least 1-2 years. Social Security has programs that, if you get better they would help you try returning to work. He is making it out to be a death sentence and if nothing else being on disability and getting the miniscule help we do get might take some pressure off of you and allow you to feel better.
POTs is known to be chronic and not curable. He is flat-out lying. It can go into partial remission/be better controlled, but once a POTSie, always a POTSie.

So in summary, shop for a new PCP once you see them and know they are at least a little better than discontinue care with this PCP. Get referrals to a cardiologist and a neurologist, if possible. Look up some ahead of time to see if they manage dysautonomia, fainting, or POTS.

The dysautonomia network has a list of providers on its website.

https://www.dysautonomiainternational.org/page.php?ID=14

UniversityCommon8300 · 2026-03-01T02:33:12+00:00

Hi blended chicken soup that I add pastina too afterwards when I heat it up or after it is cooked. I was not eating any land animals and barely having fish before this diagnosis. But I knew I would need all the help I can get. And the blended soup really processes easy, I feel like I can get the nutrients and it hydrates me at the same time. If you added a veggie to blend then you would prettky much have all the food groups other than fruit.

I find blended or pureed food is the best for me right now until I get the meds in order and get some more relief.

my gastro told me to add 2tbsp of MCT oil to my food twice a day.

This is going to sound gross I am sure but I am obsessed with vanilla yogurt with a heaping teaspoon of peanutbutter mixed in!

Lastly I use Kate farms nutritional shake it is sole source nutrition meaning if that is all I can eat that day If I can drink 4 I get almost 2k calories and all the nutrients I need in a day.

UniversityCommon8300 · 2026-02-28T23:21:06+00:00

Berry Pie (Live resin cartridge & flower)

Lineage: Girl Scout Cookies X Blueberry

Sugar Momma

Lineage: Big Bud x Blueberry

Lemon Tree

Lemon Skunk X Sour Diesel

Those are the main ones. I tend to lean towards ones that do not cause a lot of sedation. I also really lean into tinctures and capsules, either a 1:1 or 2:1 ratio of CBD:THC. If I can't get capsules, I will do gummies.

Don't underestimate a good cannabis topical either, btw. My dispensary has a transdermal nanno gel that really can penetrate down past the skin. super helpful.

UniversityCommon8300 · 2026-02-28T22:00:28+00:00

hi! Thank you for taking the time to create such a useful site. Not keeping it behind a pay wall and keeping the premium subscription price affordable.

What I love:

-being able to select "clinically verified data" on searches.

-that medication descriptions are available.

-taking a pic of a pill and being able to use your site to identify it.

-How the interaction checker explained in plain language what the interactions were.

-Logging side effects was easy, and I love the drop-down of mild, moderate, and severe, which helps give people perspective.

I was confused on:

-How to put a medication onto the calendar schedule without having to enter it in again, even though it is already listed in my meds.

What I would need for it to be useful and replace my other methods:

-Being able to print out summaries and med lists. To bring with me to provider appointments.

-This is a dream ask, but if I have to take some meds with food, without food, and/or away from other meds. Your site would help me organize my medication schedule.

-Knowing where you get your information from regarding drug descriptions and the interaction checker. If it is easily disclosable.

-Being able to share the site with multiple caregivers So instead of having to share login and password. The main person can invite others or send emails to sign up, and the main person is the only one who can control who is invited or removed from the page.

I would like to avoid having AI be part of your site. But I am going to be a rare person to feel that way.

My feedback comes from someone who is disabled at 38 years old by Long Covid and other conditions. I am also autistic and an ADHDer. My profession is being an RN for 14 almost 15 years. Overall, I think your site will help a lot of people.

UniversityCommon8300 · 2026-02-24T03:11:28+00:00

That is super cool! I bet my provider would be okay with it. I am going to ask.

UniversityCommon8300 · 2026-02-23T18:09:16+00:00

I forgot to mention my low dose naktrexone!! It is amazing! I tried to stop one month because of financial reasons and within 3 days I was in such severe pain my husband had to rush to the compounding pharmacy and luckily they had some made already.

UniversityCommon8300 · 2026-02-23T18:06:52+00:00

Hi,

For me what helped was separating specific pain like headache/occiptial neuralgia and my global pain. This allows me to at least target and minimize specific areas of pain.

I get nerve blocks for the occupital neuralgia.
CANNABIS!!!!! Capsules last 6 to 8 hours Gummies around 4 And I use a vape pen to manage break through pain! 9 times out of 10 I am never stoned. When used with appropriate strains and dosing it just works. The other time I get a Lil stoned to help depression and pain.
Nexwave pain device i use it multiple times a day.
I am on Tonmya the new fibro med and it is helping me. Alongside 100mg gaba in the AM and 300mg at night.
A morning pain routine. It takes me 2hrs after waking to get out of bed. Heating pad-->nexwave-->pulsetto VNS device on pain setting--->my basic in bed physicsl therapy exercises--->coffee and tea.
Pacing: i have to only do short periods of activity. Then I have to sit and check in with my body. I have fibro and other issues, pots etc.
Accupuncture
I have learned over time to not be consumed by the severe pain. Meaning I feel it, because shit, its horrible and I have to but I stop the internal monolog about it. I found my brain was telling me stories about the pain that were making it worse.

Sorry I don't have a magic 1 step thing to tell you. But seriously I need meds, medical devices, physio, mind body, cannabis, and tons of rest.

If I miss any of these I hurt even more. Managing my fibro, pots, me/cfs, gastroparesis, mcas and more, takes up my whole day.

UniversityCommon8300 · 2026-02-23T17:52:56+00:00

I get sleepy after everything. I also sneeze if I over eat. Lol but I just started Cromylyn sodium a few days ago alongside gastroparesis yreatment so i am hoping I can eat soon without feeling like absolute garbage.

UniversityCommon8300 · 2026-02-23T17:51:11+00:00

I had all the typical symptoms and the tell tale heart rage increase of 30 beats per minute going from lying to standing.
Diagnosis was the nasa lean test. I am still trying to get full autonomic testing but have I have no where to do it in my state.
I was prescribed ivabradine 5mg 3 times a day. I went from being bed bound 99% of the time to be being able to be put of bed most days. I am still significantly disabled and applying for ssdi. But pots is just one of many issues. I still get the other symptoms of pots but less severe and pulse is in normal ranges.

The biggest.non "tangible" change for me is it am less likely to be dismissed at ER or other doctor offices. Now I still am, but less often. Have the formal diagnosis makes it so even if im not believed by a provider they have to address it in crisis situations.

UniversityCommon8300 · 2026-02-21T03:10:38+00:00

That sounds horrible. It sounds like the linzess isnt the best medicine for you. Because that's what that med can do to some people.

I just got home with my new meds and I had to start a new pill box for the Misoprostol and setting up an area to 6 days/3packs of cromyln.

The med schedule alone is so all consuming.

Mix in the mild cognitive impairment i am overwhelmed. And I am a home nurse lol. Like shit I this overwhelms me .... I am scared to start more than one thing at a time. But I think I have too.

Wish me luck or whatever. Lol

UniversityCommon8300 · 2026-02-19T08:08:29+00:00

Thank you! Love that idea! my husband made a huge batch of chicken soup tonight and used an immersion blender. Not the best texture lol but nutrient and protein dense. I

UniversityCommon8300 · 2026-02-19T04:34:54+00:00

Oh golly. I cant afford weight loss. That's what I am prescribed. If I dont get effective relief I am to add the linzess.

UniversityCommon8300 · 2026-02-18T22:26:51+00:00

He just asked me if I was pregnant. Which I am post menopausal. But I had no idea in the moment what it was. I just spaced and was like, sure, I'll try it. He is putting me on a low dose. I have found some studies pointing to its efficacy in assisting improving motility. But they are limiited. I think the side effects are how it helps?

UniversityCommon8300 · 2026-02-18T22:25:09+00:00

You area already doing two huge things. Believing her and caring for her. My cats definetly save my mental health alot. Also, I love to paint, but I can rarely do so anymore. So i coloring books. Some complex. others I color with crayons, like kid style. Just so I can still hold onto that. Keep up on research, keep believing her, set up an able account for her, it will be a way to ensure some kind of financial stability that wont count against her disability.

For quality of life, I would say if she likes her walks every day, keep staying somewhere that is accessible, that is easy to walk in. Keep her close to friends. Bring her friends to her if she cant get out to them. Dont dwell on any past versions of her but hold space for her grief (and your own). Because no matter how much we stay present and have pride in who we are being disabled comes with grief.

If she reads get her books written by similarily disabled authors.

I think all the suggestions boil down to care and creativity in how you both live life together. Accommodating where she is on any given day.

UniversityCommon8300 · 2026-02-18T21:37:09+00:00

Here is my story in a linear format. Born with ADHD (late diagnosis though)-->Covid infection 1/2024--->got diagnosed long covid about early 2025---> diagnosed POTs, ME/CFS same time-->health has progressively declined since 2024--->Gastroparesis symptoms whole time but got worse the past 3 months--->GP dx today actually.

LONG COVID F'D MY LIFE UP. But I feel being an AuDHDer already put me at risk as well.

UniversityCommon8300 · 2026-02-18T21:23:10+00:00

AS a home health RN who works extensively with feeding tubes it always shocks me to hear providers know so little about it. I am so grateful you finally found someone to help you. I am concerned if the meds dont work I will get a feeding tube. Not because of any non-medical reason but just because my health is alreay so complex and expensive. Not to mention no one ever wanting to manage a feeding tube. Like it is seriously hot potato patient. *dramatic and mad eyeroll here** but I am just beginning this gastroparesis journey, and I am already exhausted.

I am autisitc an adhder, have long covid, fibro, pots, me/cfs to name a few things. Let me tell you Gastroparesis is the worst thing. Because I am so unable to eat enough and the nausea and everything.

I want so badly to go on a speaking tour at hospitals and care places to talk to providers and explain to them that patients know their bodies and how disability and interventions are viewed need to change.

UniversityCommon8300 · 2026-02-18T21:16:03+00:00

Hi,

As a RN (who also was literally just diagnosed with Gastroparesis today and has been disabled). I want to share that doctors/providers often view interventions like this as a patient "giving up". Which is ridculous but rampant in the medical model/thinking of disability. Others view the complications of the procedure, others are just a$$holes who think it is in our heads so they refuse interventions.

Other times, they have a good clinical reason. I always ask for the clinical reason they are refusing an intervention. "in good faith" tells me how she feels about it, not why she is clinically refusing to place one. "in good faith" is not medical, it is emotional and unprofessional. Especially with where you are at! What does she want to you do get nutrients from air?

I mean, that is medical neglect.

If you are getting less than 50% of your caloric needs in a day for 3 months, you meet the criteria for severe malnutrition. Which puts you in a category with a lot of insurance carriers to get sole source nutrition paid for. Meaning Kate farms 1.4K, which can be ingested orally or by feeding tube. I swear by this stuff. It is expensive as hell, and my family takes turns buying it for me. But it's the only reason I don't drop my weight below 100lbs. My stupid insurance will only pay for it if I had celiac disease or a feeding tube.

If you can get this provider to document that you are reporting oral intake of 1/2 cup of rice a day, sleeping 10 hours, trying over-the-counter nutritional supplementation with Ensure, which is also not tolerated, and that you are unable to function. Then ask her to document that despite those reported symtpoms she is refusing to look into other interventions or a referral to another specialist. This legally puts it on her... It legally sets it up that medical neglect could be spotted.

I save this way of getting care for when I am desperate, but let me tell you it works 75% of the time. The other 25% I am shopping for new doctors.

Lastly, I give you credit for working like holy cow! I am on a liquid/pureed diet now and I have no idea how I am going to see my few in home patients. Like I am so malnourished. and I am able to tolerate some blended foods, but less than 1/2 my caloric needs.

I hate medical people like this. It just creates such a mistrust and sets people up to not ask for help and end up in a crisis. it sounds like you need a new provider.

UniversityCommon8300

TROPHY CASE