How to Get On .... Disability, and So Much More

There's a beautifully done website by a talented young woman who has complex chronic illness and is in collaboration with two artists of stunning work primarily which she uses on the website for the 'tiles' and other key areas.  When you arrive you see at the top Welcome        and then        Peace. Love.Spoons.

Here's my selection of many from Elizabeth D'Angelo's Facebook album of artwork that is available for purchase.  According to the creator of the disability-focused website, Ms. D'Angelo has given permission for her work to be used if it's supporting the disability website and since this topic is doing that, I'm bringing it to YOUsers of Lumigrate here. 

If anyone wants to know what to get me as a gift sometime, the original of this which would support the artist would be lovely.  But truly, I'd rather you purchase something YOU would like and support the artist and support my work via other means. 

                                  The Abyss: The Journey Home -- Elizabeth D'Angelo

           

The overall first impression just sets a wonderful tone.  She has quite a Facebook following and I don't know how she got to be so popular before I found out about her.  I asked her that and she laughed and said she didn't know, what was up with that? 

I recently saw on Facebook the story unfold of a woman I met in the live world years ago who was spiraling into complex, chronic illness.  We know many people mutually.  I was so sorry to see it but knew she had a lot of resources, me for one, if she wanted.  I'd see her personally one day, going to visit and help fill some time.  I needed to see despite my thinking she'd be too overdone from her day when she wanted me to come based on my experience.  She was. But I got a good impression of what was going on.

Eventually she would post an image of artwork I recognized as coming from Ms. How to Get On, and said she had been officially diagnosed finally with "fibromyalgia".  I was actually a bit surprised by that, or I should say disappointed, I had hoped she'd get something more specific based on what I'd seen of her function when in person.  But I was sure happy to know she's connected with How to Get On........... because of all the wonderful resources.  It's what I will call a Grace-Full place, a beautiful place to land and learn.  I hope this will help YOUsers of Lumigrate find it as well. Thanks for the inspiration 'you know who' that's recently diagnosed.

Welcome
A guide for anyone who is homebound or bedbound in the US. Special focus on folks with Myalgic Encephalomyelitis (sometimes called “Chronic Fatigue Syndrome”). If you are not lucky enough to have ME or CFS, you are still welcome to use this guide. Enjoy!

You'll find 'tiles' to go to:

How to be Homebound, How to Find Housemates and Caregivers, How to Get Help at Home, How to Get On Grocery Delivery, How to Get on Home Doctors, How to Find More Ideas for Life at Home, How to Get on Food, How to Get on Phones, How to Get on Transport, How to Get on Medicaid, How to Get on Meds, How to Get on Medical Care, How to get on Social Security Disability, How to Get on Disability (of all kinds), How to Find Our Disability Survey, How to Get Disability for Lyme, How to Get Disability for ME, (aka How to Get Disability for CFS), How to Get Tests for ME, How to Be On After Approval, How to Handle Disability Reviews, How to Find the SSI Rules to Live By, How to Find Affordable Housing, How to Find Housing for Spoonies, How to Find Communities, How to Get Out of Student Loans, How to Get Off Debt, How to Get Out of Medical Fees, How to Survive Financially While Applying for Disability, How to Survive Financially Any Old Time, How to Get By on SSI, ...... and how to Find Us, How to Have Fun, How to Join Our many ... things.... offered. How Great is it to Have Lyme Disease.  Success Stories, Authors & Artists, What's a Spoonie?......

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Now for the topic that prompted me to take the time, spend the energy today, on Lumigrate to create a new topic for YOUsers --- Titled

Lavender Solves the Problem of the CPET

The CPET is a test that can be used to document ME and Chronic Fatigue Syndrome.  This test may also be called “cardiopulmonary exercise testing,” “V02 max test,” “metabolic/expired air tests” or a “metabolic exercise test.”

There are two kinds of tests: One Day and Two Day. You can learn more about these two different kinds of tests and the pros and cons of each way.

Many people report that this test was a huge help for their disability case. But there is a problem! Actually, there are several problems:

The Two Day test is expensive, far away, and it can damage your health. But it produces a great report documenting your disability.

The One Day test is cheaper, closer, and less risky. But the test is not performed by people who specialize in ME and CFS and it will not include the kind of report needed to be helpful for a disability application.

Lavender Solves the Problem

Lavender came up with a rather brilliant solution to this problem.

Lavender set up an appointment with a local exercise physiologist to perform a one-day test. The test outcomes included data showing Lavender was impaired, but there was no report which explained how this related to Chronic Fatigue Syndrome and none of the  kind of information needed for a disability application.

So, Lavender returned to the physiologist and showed her a copy of a sample report from a two-day CPET and requested a report analyzing her test results. Her physiologist did not customarily write this type of report, but she used the sample report as a model and this gave her a better understanding of how to document a CPET for an ME patient, and how to prepare the kind of report that was helpful in a disability case.

By doing it this way, Lavender was able to take a one-day test and get a report that included the same level of detail and analysis that usually only comes with the two-day test. It included level of functioning and an analysis of level of disability.

Lavender paid $400 (instead of $2,000) and did not have to travel to New York or California. She also reported that she did not attempt to do the test to the point of exhaustion, and did not have the same level of negative health impact from the test.

Yay, Lavender! Her approach worked perfectly and she was approved for Total and Permanent Disability through her pension plan. She wanted to share her story to help others.

Great Ideas and Advice from Lavender..........

........ and I leave you to go to the link and see her advice ~ Mardy

howtogeton.wordpress.com/2017/09/08/lavender-solves-the-problem-of-the-cpet/ [1] 

and / or connect with their Facebook page ---- In the founder's words: "You are wonderful for doing this topic.  Thank you so much, Mardy.  ..... Thank you so much, you are a doll.  Here's the link she provided to me for Facebook connection: 

The Sleepy Girl Guide To Social Security Disability [2]"

 Live and learn.  Learn and live better! ~~ Mardy