So Long, Farewell, Auf Wiedersehen, Adieu

goodbyeAt the stroke of midnight on New Year’s Eve, as the world greeted 2013, I closed the book on a huge chapter in my life.  As of January 1, I officially joined the ranks of the disabled.  The transition was more symbolic than anything, since I have actually been on medical leave since June.  Even so, I found myself swallowing hard at the finality of it.

The decision to leave the work force was not easy for me.  I’ve always worked. Though I was a stay-at-home mom when my kids were young, I still clocked 30 – 40 hours a week (sometimes more) as a freelancer. The thought of not working was anathema to me. In fact, until just a few weeks ago, I was convinced I would return to my job once I’d fully recovered from my bouts of pneumonia last spring. But each time I drew close to reaching the “magic number” (10 mg prednisone), I had a flare.  After a few long discussions with my doctor and a sobering look at how my disease has affected my daily life, I realized that returning to work was impossible. The constant threat of infection is a danger I can’t afford. And, how can I expect my co-workers to keep picking up the pieces for me when a sudden flare lays me out for weeks at a time?

When I entered the hospital in early December with my third case of pneumonia in just nine months, I knew I’d made the only decision I could.  Thankfully, I had purchased Long Term Disability insurance through my employer.  If you have the opportunity to buy LTD, do it NOW.  Someone gave me this advice at the beginning of my career and I am so thankful I listened.  This is our family income for now.  Every penny spent over the years was worth it.

I also immediately applied for SSDI (Social Security Disability Insurance).  My main purpose for wanting SSDI is the Medicare option.  After two years of SSDI benefits, you are automatically eligible for Medicare. Unfortunately, you have to be on Medicare an additional two years before it will pay for a transplant. That’s four years total before Medicare will cover a lung transplant. So, it was important to me to apply and get accepted as quickly as possible.

While researching the application process, though, I read that some 70% of SSDI applications are turned down the first time. Thankfully, there is something called the Compassionate Allowances List.  The CAL is a list of 165 medical conditions that are considered so severe, they are sure to qualify for disability benefits.  Applicants who have CAL conditions are fast-tracked and benefits are decided upon within a matter of days rather than months (or even years). IPF is on the list, and I received my approval three weeks after I’d submitted my application online. Finally… IPF is good for something!

Now that my benefits are in place (and the Medicare clock has started its slow count-down), I am faced with what to do with myself.  I’ve been gobbling up books by the dozen. My husband and I have started hunting down healthier recipes to help my ongoing weight-loss effort.  And I am even eyeing my knitting basket with its snarl of remnant yarn, trying to come up with something fun and creative.  But in the end, this is all just idleness.  What can I do that will make a difference for someone? What can I explore that will teach me something new?  I’m still figuring that out and I’m wide open to suggestions.

In the meantime, here are a few helpful links if you are looking into applying for SSDI:

Social Security Disability Page   The application is two parts: the benefit application itself and the Adult Disability Report. The report is where you will list your doctors, medications, tests, hospital stays, etc. Download the checklist first and gather up all of your info before you start. It will make it much easier (and faster) to complete the report online.  Remember to use the “Remarks” box at the end of the report to paint a picture of what your life is like because of your condition.

SSDI and COBRA Extension   When you are approved for SSDI benefits, you may be able to extend your COBRA coverage an additional 11 months (for a total of 29 months). This article explains it all.

Why You Want SSDI   This is another “lawyer” site, but it does give a great summary of the benefits of receiving SSDI.

 

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11 thoughts on “So Long, Farewell, Auf Wiedersehen, Adieu

  1. Pingback: It’s (Not) All About Me | Reality Gasps

  2. Lori, I have enjoyed reading your blog posts. Jack Linn has forwarded them on to me. I just finished a major rewrite of my book – Is God Good? -,and he thought you might be interested in reading it and perhaps critiquing it for me. If you would be interested, please let me know and I will send you a copy electronically or by snail mail. May God bless you in the days to come in ways far beyond what you are currently asking or thinking.

  3. sorry to hear about all your problems Lori. Glad you got approved so fast, that relieves some pressure. You could still think about something to do from home. Just enough to keep you busy.

  4. Lori,
    I am sorry to hear you have had to leave the workforce, but you can still write from home! I appreciate the links in the story and the advice on leaving the workforce. I was diagnosed with IPF 3 months ago and know all of this is in my future. God Bless and will be praying for you!

    Kevin

    • Good luck, Kevin. Everyone’s journey with this disease is so very different. I’ve heard of many who stabilize quickly and are able to continue as they are for many years. I pray that this will be your story. My biggest recommendation to you right now is to get yourself into pulmonary rehab as quickly as possible to save the lung function you have — and to focus on healthy eating and good nutrition. You are in my prayers as well. Thank you for reading, and sharing!

  5. So glad you got approved right away. I’m still fighting for my SSDI. (Long story) It won’t be long before you’re wondering why you hesitated in “giving up” work. I just wish I was healthy enough to enjoy my early retirement… : )

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