The Dashing Rogue

05/01/2025

Maybe you've seen that our Beer Mistress is sick with terminal lung disease. If you want to send her love for her birthday this May 10- details of her fundraiser are here and you can always follow her Bucket List adventures at Shannon's Sunflowers
https://gofund.me/9d0896c0

It's MAY! I'm turning 43 on May 10, and for my birthday this year I'm raising money to knock things off my Bucket List! Far as I can figure based on how I've been doing at Pulmonary Rehab, I maybe have another year of really good Shenanigans in me before my oxygen requirements have me limited in my ability to get out and around. Anything more than that will be a blessing, and I will maximize my time as I am able!

I first publicized my Bucket List back in December on my blog. There are certain things that are unlikely because of my limitations but some are absolutely attainable AND it's evolving as people offer me cool life experiences that I've been saying YES to.

I've got a GoFundMe https://gofund.me/9d0896c0 and several folks have asked for Venmo, so I set one up. -Jones-4001
I'm going to write a blog to delve into this further but YES, I am appealing Social Security Disability and applying for jobs that I think I am able to do... nothing has panned out yet, but I am optimistic that some opportunity to earn money will present itself.

In the meantime, thank you for your support- be it financially, emotionally, in mail, messages, and hugs. Love to you all.

09/23/2024

Good morning friends! As I embrace my new mindset of actually ASKING for help, I find myself in need of a few things that will help me continue my transition to "new normal". If you or someone you know is able to work with me on the following things, please know that I will be immensely grateful.

1) Does anyone have experience with RSS feeds on YouTube? I'm going to shut down The Dashing Rogue site because I won't be physically able to do beer dinners anymore and unless my condition improves I won't be able to record anything either because I can't speak without coughing or losing my breath for any length of time. But I ADORE the magic we made on the podcast and don't want to lose it. It is set up as an RSS feed now, and we have a DR YouTube channel. It says there's an RSS option. If someone can help me get that migrated, I'd be especially appreciative.

2) Since I have been self employed for the past 8 years, it seems I do not qualify for any state (NJ) or federal disability even though my condition 100% qualifies. Does anyone know of any programs that help folks in my situation or lawyers who may be able to help me make a case? My budget had planned to keep working- both in the off season and through the next 25 years of my life, so this sudden influx of new and chronic expenses is not sustainable. ANY insights, experiences, or referrals absolutely followed up on.

3) My official diagnosis is Interstitial Lung Disease (ILD) and Connective Tissue Disease. ILD is not super common (estimated 400,000 cases in the US) so I am joining online groups to try to meet people and learn from their experiences but if you know anyone who is also fighting these diseases and can get me in touch, that would be fabulous. I have an appointment with the Rheumatology Team in mid-October when I will officially learn my Autoimmune Diagnosis, but that seems much less relevant now as the other two diseases are providing enough challenges on their own. The most relevant part of the Autoimmune diagnosis is that it rules me out as a candidate for lung transplant because my body is likely to reject any organs as foreign bodies.

I know there will be more, but I appreciate you reading this far. Pic from porch sitting time at yesterday's GORDON family reunion in Manheim. Video to follow.