Hello Followers – Week 9

10634094_712384542150316_7571603699649932357_oA little spoonie guide on how to navigate “the system”

People have been sending me GREAT information on medical equipment. I am gathering it up and will post more soon. I am collecting information on wheelchairs, scooters, shower chairs, hospital beds, walkers, etc.

Does anyone else here use any medical equipment? Would you be willing to share with me what you use, how you got it, and how you paid for it?

I continue to be amazed by the outpouring of support and kindness.

Since I have been mostly bedridden this month I’ve had a lot of time to post things. Here’s a great big mash up:

๐Ÿ… For folks who recently applied for disability and are now wondering: What do I do now? Whatโ€™s going to happen next? What do those weird messages on my online account mean? How to Wait for a Decision & How to Get a Decision

Roselyn applied for a paratransit program and got denied. Six months later she applied again and got approved. Her health didn’t change. What did change? How Roselyn Got Approved by Using the Magic Words

๐Ÿ‘— Many Social Security disability lawyers say that a Residual Functional Capacity Form is the single most important piece of paper you can get. Violet did a fantastic job of getting FANTASTIC function forms. If Violet can do it, so can you! How Violet Got More Function Forms than Anybody Ever

โ˜‚๏ธ Thirty Second Wheelchair Service Review. Amtrak: Never again. Airports: Why have I not been doing this every day of my life? How to Wheel Around an Airport

๐ŸŒ‚ Many people get a lower Social Security check and do not understand why this is happening or if anything will change it. Lucky you! You have come to the right place to figure some stuff out. How Come My Check is So Low?

๐Ÿ Beginners guide to Social Security disability (first six months). How to Apply โ€“ A Guide for Spoonies

๐ŸŽ If you are on SSDI, you can get extra money for your kids. Hopefully, you already know this, but just in case you donโ€™t, hereโ€™s Lilacโ€™s storyโ€ฆ How Lilac Got Approved for Dependent Benefits

ย I have done a whole bunch of updating on this page. And I would like to continue to do more. Please share your stories, suggestions and ideas. How to Get Approved for Disability for Lyme Disease

There are special laws in place that protect people on Social Security from debt collectors. Perhaps you would like to know what they are: How To Protect Your Social Security Check

๐Ÿ… Shit Doctors Say. From the chronically fabulous Vicki Nevins.

New! Fancy! Updated!ย Top Ten Pages on the How to Get On Website

ย  The best Facebook thread ever created. How Great Is It to Have Lyme Disease By Lauren Lovejoy and friends

Tips for finding housing for Spoonies. How to Find Housing that is Both Cheap & Good. Also on this page: Beautiful artwork by Rosie Fusco “Rosie Fusco is not only a fellow Lymie but she has also helped me get through a few rough patches. She needs our help as her Lyme disease is much worse. She has helped so many and now we need to come together and help her out as much as we can. The only family and support system that she has is her doggies. She sells different items at https://www.facebook.com/InspiredByYouNY/ anything helps” Caroline Tru

Free or discounted meds, supplements and lab tests. If anyone has tried any of these programs, I would love to hear how it went. How To Be Broke & Medicated. Thank you to Cort Johnson and the folks at Health Rising by Cort Johnson for all the good info on supplements, bulk supplements and buying meds overseas. And to Jennifer Robin and Mast Movement for financial resources links and info.

๐Ÿ‹ If you have a question about Social Security disability (SSI/SSDI) you can post it below. I may or may not know the answer. This is for the US. If you are in another country, I definitely wonโ€™t know the answer. This post is set to public. Anyone is welcome to comment.

๐ŸŽ One of the greatest mysteries in this universe is how to get an actually accurate answer to your Social Security questions. I cannot claim to have discovered the answer to this mystery – which will forever be unsolvable and imponderable – but here are a few ideas. How to Escape the Information Black Hole. Beautiful Photo on this page: Harvest Moon by Hattie Pennell Richards

๐Ÿ‰ When you apply for disability they do NOT tell you what is going on now or what to expect next. Here’s a typical disability timeline, complete with all the interesting things that may happen to you along the way. How Long Is This Going to Take?

๐Ÿ  For friends on Medicare. How to Escape Medicare Fees

๐ŸŒธ Quite sadly, Patty did not win her disability case. Quite happily, Patty is an angel who wants to share what she learned so that you can win your disability case! How Pattyโ€™s Lawyer Never Told Her What She Needed to Know. Thank you to the kind-hearted and angelic Patty Skelton Preston

๐Ÿ’ More stories!! New stories!!! Thank you to everyone who shared their stories. How I Got Approved

๐Ÿญ For folks in Great Britain. ME & Chronic Illness Benefits Advice Group. Thank you to Gina Clagg for sharing this.

๐Ÿ„ The beautiful artwork at the top of this page was created by Elizabeth D’Angelo, spreader of love and hope, illness warrior, and force of nature. About the Artist


End Notes
The disability info in this post is for the US. If you are from another country, you are most welcome to read, join in, and comment. Just want to warn you that the information on disability may be different in your country.
Suggestions, ideas, questions, and feedback are always welcome. Please let me know if you find any mistakes or problems on the site. Especially links that do not work or do not go where they are supposed to. I cannot check all these links!!!!
If you want to read more notes just like this one (but different!) they are all here:


๐Ÿ… ๐ŸŽ ๐Ÿ‘— โคย  Lily Silver



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