I'm sick, disabled, and I'm heading out! By choice! Need advice!

[katajojo]

[font=Verdana, Arial, sans-serif]I have purchased a truck camper, and am ready to live the nomad life. I am currently receiving disability. [size=xx-large][font=Verdana, Arial, sans-serif]I have a genetic immunodeficiency, severe debilitative arthritis, (I use crutches), and military caused PTSD. (Civilian colateral damage incident - wrong place at wrong time - so I dont get champus or VA services. Just[/font][font=Verdana, Arial, sans-serif] federal agent victim advocate services.)[/font][/font][/size]

[font=Verdana, Arial, sans-serif]Annnnyway...I live in HUD housing, but it is making me sicker by the day, in more ways than one. The low quality air, sick building syndrome, keeps me sick, and the constant HUD regulations - staff constantly needing to enter my domicile, having to fill out everything in triplicate just to get a simple accomodation (ie please give me more than 24 hrs notice b4 entering my home so I can get the proper PPE for the crew - yea, that needed an act of congress to get them to do), pet limitations, rules on guests and friends, or roommate to share expenses, and no conducting business from your home (which I m talented artistically, and want to sell on etsy but cant in HUD housing) - are making my PTSD, and my physical ailments, exponentially worse. The only thing I am free to do in HUD housing is BE SICK![/font]

[font=Verdana, Arial, sans-serif]I decided fresh air, movement, and freedom is what i need...literally...to save my life! [/font]

[font=Verdana, Arial, sans-serif]Annnyway, here are my questions: [/font]
[font=Verdana, Arial, sans-serif]1. how do those of you on SSDI keep your health care? [/font]
[font=Verdana, Arial, sans-serif]2. how do you deal with 3 year disability reviews? [/font]
[font=Verdana, Arial, sans-serif]3. Does SS think if we can be on the road we must not be disabled? Ill flat out die if I lose my SSDI. But Ill die if I stay where I am. Seethe dilemna? [/font]

[font=Verdana, Arial, sans-serif]Thanks in advance for any help provided. Iv been reading and watching bob for 3 years now. Im taking the plunge.[/font]

 

[DrJean]

I hear ya!

I'm on worker comp disability... physical and ptsd... My reviews can be yearly!
I think you might need to sign up at one of those mail forwarding places for a residential address and see the ssdi people there... and from there on it's a matter of logistical scheduling?

You're military: don't tell them anything but short answers on the forms... they have NO NEED TO KNOW and they really don't care anyway, you know?

Your HUD housing probably has mold.  It can kill ya!

IDK about ssdi as I fell 1 quarter short of time to receive it (have enough points but..)

Try this site and this thread here :   it's a good site with a few forums for PTSD also... https://forums.psychcentral.com/insurance-finances /475080-everything-you-need-know-ssdi.html

 

[AbuelaLoca]

Welcome katajojo! I can't answer your questions about ssdi because I'm not there... YET... so I'm interested in the answers for sure! I totally agree that getting out of your housing situation is important to your health! Good luck and keep us updated!

 

[rvpopeye]

Welcome aboard katajojo!
No doubt being out in nature has healing powers...

 

[Wabbit]

Hi Katajojo- I just found out that I have been on disability for 12 years. Had my first "review" in 2017 and I wasn't around(Iowa) to kiss a$$ and make my case. They really seemed to want to cut my SSD, the only letter I got was a "final notice" and them saying they had been sending me letters for 9 months. They(lady in charge of my review) called the phone number I have on record(last 6 years) asking what was up, I asked her what was up as I keep my mailing address updated and whatnot. They were sending letters to an address 6 years old and in a different state. I am on medicare and medicaid, so they can see what state is paying for it. Anyways, rough day and I'm grumpy. Stay on top of your mailing address, both locally and that 45 min+ wait 800#. The lady said I had 10 days to appeal a review decision...my mail forwarding is slower than 10 days. I keep my Doc appts, I try my hardest to comply with their rules. You should also. I am going to try their vocational rehab crap and see if they can't train me in a job that I can just be by myself or close to it. They act like I'm living high off the hog when I can't even afford an apt. Grrr. Anyways, best of luck and if you need to vent, PM me but let me know you're venting, otherwise I'll try and help...lol.

 

[katajojo]

Hi Katajojo- I just found out that I have been on disability for 12 years. Had my first "review" in 2017 and I wasn't around(Iowa) to kiss a$$ and make my case. They really seemed to want to cut my SSD, the only letter I got was a "final notice" and them saying they had been sending me letters for 9 months. They(lady in charge of my review) called the phone number I have on record(last 6 years) asking what was up, I asked her what was up as I keep my mailing address updated and whatnot. They were sending letters to an address 6 years old and in a different state. I am on medicare and medicaid, so they can see what state is paying for it. Anyways, rough day and I'm grumpy. Stay on top of your mailing address, both locally and that 45 min+ wait 800#. The lady said I had 10 days to appeal a review decision...my mail forwarding is slower than 10 days. I keep my Doc appts, I try my hardest to comply with their rules. You should also. I am going to try their vocational rehab crap and see if they can't train me in a job that I can just be by myself or close to it. They act like I'm living high off the hog when I can't even afford an apt. Grrr. Anyways, best of luck and if you need to vent, PM me but let me know you're venting, otherwise I'll try and help...lol.

But how do you keep dr appts in Iowa if you're in AZ for example? That's my question. I'd really like to travel where I like, but a 1300 mile trip every other month (the gubment's mandatory appt schedule for med refills), will eat me up in diesel. I feel like even though Im leaving HUD, the gubments medication rules still keep a noose around my neck. And finding docs willing to see disability patients is dwindling. In the city I live in, there is only one doc willing to see chronically ill pain patients. (And I live in a city of 200k!) So I suppose no matter where I go it can't be worse than that. 

I plan to go to DC to fight this craziness - rules so strict no doc wants to treat you. It's the first thing I plan to do. Drive my rig up to Capitol Hill, and wheel myself into my senator's office. My right to medications I'v been on successfully for over 11 years,  that give me a quality of life factor so I can function, should have NOTHING to do with my location, my residence, or heaven forbid OTHER people's addictive habits, nor require me to be tethered like a dog to a physician's office every month. 

But...Im leaving, all the same, and Ill figure it out as I go. Im taking a chance. I guess if Bilbo Baggins can leave home without a handkerchief, I can leave home without a doctor. 

"It's a dangerous business, Frodo, going out your door. You step onto the road, and if you don't keep your feet, there's no telling where you might be swept off to." - Bilbo Baggins (JRR Tolkien)

 

[highdesertranger]

Welcome Katajojo to the CRVL forums! To help you learn the ins and outs of these forums, this "Tips & Tricks" post lists some helpful information to get you started. We look forward to hearing more from you. highdesertranger

 

[ArtW]

Welcome! Can't really offer you any advice, not familiar with traveling on SSDI

 

[Wabbit]

Katajojo, wrote out like 4 long responses, but had to delete them. I don't know you or your situation and vice versa. I don't want to do more harm than good(anymore). In short, I got off meds 6 years ago. Cost me, but in hindsight it was worth it. Not something would recommend to anyone. If you want, PM me but keep your expectations to a minimum. Expectations are soul killers. Best of luck, being on any hook is a freedom stealer. 'Cept booze, my subconscious tells me booze is OK...lol.