Update! LONG overdue!

Disability and Website update! 

I know I have not written a post since February and I feel terrible. There has been a lot going on!

So here is the first update! I have received enough in donations from my friends Gayle and Emily that will really help me get back online since my mistake in not paying for what I needed when I renewed my website. I really appreciate those of you that reached out with a donation or kind words, shared my post and tweets! And I am really sorry to have to ask for help! 

The website will be up and running just as soon as I get it all designed, and figured out. So, please stick with me on this! 

If there is anything you would like to see on it, let me know by commenting on the post, email me at HOPEforCOPD@gmail.com, DM me on Twitter, or IM me on FB. 

When you are broke as a joke and unable to work, money is scarce. I have had to rely on the kindness of my friends and my family to cover basic living expenses and personal care items, receiving old clothing to attend funerals and a wedding, and things that fit after 40 pounds of weight loss. After not working since April 2011, I don't have money for new things. 

BUT!!!!!

I have great news! After receiving those donations, I got a letter in the mail from SSDI!!!

I had a feeling April was going to be a good month. And that I would get something good...

The letter arrived and stated that the Administrative Law Judge that oversaw my hearing...

SHE ABUSED HER DISCRETION! 

(first bullet point)

ABUSED DISCRETION

If you remember, I had said at one point maybe? That the letter after the hearing was another denial. The reasons given were not justified by any means. As I read it I cried, and just imagined her, the judge, going home to an empty house... Finding her dog had died and getting served divorce papers. Then sitting at a coffee table sipping/guzzling wine as she drunkenly took her sadness out on me. 

The wording was slightly incoherent, she admitted in her denial that she did not have all the paperwork she needed to make some assessments but ruled against me anyways. Used great bias on other points because I had still smoked. Which for the record, has NOTHING to do with whether you qualify for disability or not. She used it from records from 2012 where my DR refused to refer me to a specialist, and said smoking was causing my repeated bacterial infections. 

No, smoking is NOT okay when you have a chronic lung disease of any kind. OR EVER. 

Smoking, is also not an excuse to deny a claim. 

The ruling came back that they plan to make a decision finding that I became disabled on November 21, 2013... When I actually had PFT's (pulmonary function tests) finally, and they proved that I was very ill. So, while I will not get back pay from back in April of 2011.... I will receive back pay from November 2013. Which is better than fighting on at this point. 

PLAN TO RULE

Please don't stop fighting for what you have earned... 

We work hard and some of us get sick... This is exactly what SSDI is for, to help us when we can no longer work.

Now, the money I will receive is NOT enough to buy as home for myself and my 6 year old daughter... BUT, we have other options. My father also has COPD. He is in the process of buying a home in the middle of nowhere, south east of Montauk State Park near Salem, MO. We can move there with him, which he needs supervision over his health.... But, my adult kids live in Rockford, IL... 

SO! What do I do? While I do qualify for a double lung transplant, my pulmonologist, the fabulous Dr. Emily Gilbert of Loyola in Maywood Illinois says I am doing great and we will NOT try to get me listed yet. She said I am too young and healthy enough in every other way and can maintain this health for a very long time. So, I hope that is very true. 

I take my meds properly, and use an app called Medsafe to remind me when to take my meds. I have recommended it before, and highly recommend ANY medication reminder app or set alarms to remind you. Taking your meds on time is critical to maintaining your health level, as is getting as much exercise as you can handle every day. Eating healthy, and being as positive as you can, will help tremendously as well. 

So, what do you think I should do? 

Buy a rundown house that I can afford???

OR 

Buy an SUV/Truck and travel trailer and travel while I can??? 

(this would be between my father's home in Missouri, my kids in Illinois, all around the USA and property for a home base where ever I like) 

PLEASE comment and let me know what you would do. 

I really love the idea of traveling with my mini me, and I homeschool so I think it would be great to travel to the places she will be learning about. Just not sure if I can physically handle some of the maintenance involved with travel trailers. If you are like me with COPD and have done this, I would really appreciate your input! 

My princess Tiny/Tony says thank you for supporting her mother and helping spread the word about COPD.