I am excited to share a few more bits of positive news with you! 

• EDS - Iowa is hosting a meet-up here in Des Moines today!  I'm excited that I have the opportunity to attend this event and am hoping to meet others with the same genetic disorder.
• Guardian (the short-term and long-term disability insurance carrier; if you remember from previous posts, they have extended their appeal review window by an additional 45 days and had requested more documentation) - we're making progress on submitting the newly requested information:  
  • My primary health care provider, Dr. Richardson-Colby, completed the additional documentation, called the Physical Capabilities Evaluation form, late last week and it has been submitted to Guardian (the short-term and long-term disability insurance carrier; if you remember from previous posts, they have extended their appeal review window by an additional 45 days and had requested more documentation).
  • My geneticist, Dr. Bosch, also completed the Physical Capabilities Evaluation form last week and submitted it to Guardian.
  • My therapists' office provided all clinical notes/files to Guardian this past week. 
  • My neurologist and physical therapist are also working to complete the Physical Capabilities Evaluation form to submit to Guardian. 
• Social Security Disability Administration sent me paperwork on Friday to review and sign; I plan to mail the documents back tomorrow.  Happy for some more forward movement.
• Started working on filing my taxes yesterday once I was able to download my W-2 from ADP's website.  The only outstanding piece is a 1099-R that I'm waiting to receive that documents the 401k withdrawal in 2018.  Fingers are crossed that I completed it correctly - if so, we will receive a refund this year (minus what will be withheld from taxes that were not paid in 2018).  That will definitely help us!   
• Submitted my paperwork and fee for the State of Iowa's medical marijuana card.  My plan is - if approved - to utilize the CBD oil that does not have the psychotropic effects.  This will hopefully reduce my pain and anxiety.
• Facebook lifted the ban on my Weebly blog,  https://www.baildeweyout.com/.   Woohooo!  Now I can share, share, share away on Facebook again!  

As my friend Bob would ask, "what's your positive?" 

Hi my tribe! 
My apologies for being quiet the past few days...  I thoroughly over did it earlier this week and am still playing catch-up with my rest, aches & pains.  

I came across the zebra meme below - and it made me laugh out loud!  Hope you enjoy it, too!  

In other news...  I received my 90-day supply of three medications this week...  Almost $300 - and that is with insurance!  Oofta!  

I am incredibly grateful for everyone's encouraging words, positive thoughts, well wishes, and donations.  Thank you for being YOU!  

Hi my tribe!  
I know that I have been inundating you with medical information since I began this blog.  I wanted to take a day to provide updates on my appeal for long-term disability and Social Security Disability benefits.

Guardian (Long-term Disability Carrier)
First, I am in the final-level appeal process with Guardian.  They are the long-term disability insurance carrier.  If you remember from my Facebook posts, I was initially approved for short-term disability beginning in November 2017 - April 2018.  Then, suddenly, the approvals and pay stopped.  From what I can gather, a different team had engaged within Guardian and they deemed that my medical condition did not rise to the level of needing to be on a full-time leave of absence/disability.  However, there were zero changes to my health status in the April 2018 timeframe.  

Now, I paid for long-term disability insurance benefits through my previous employer - I even had "upgraded" to the higher tier benefit - which was supposed to provide wage replacement up to 70% of my past wages through retirement age (if disabled). 

I appealed...  Was denied.  Now, I am at the "final-level" appeal - meaning if Guardian denies my claim this time, my only other avenue would be to hire an attorney and sue Guardian.  I received an email yesterday from most recent "primary contact" within Guardian...  basically, the email included a pdf copy of a letter that is to be mailed to me...  it stated that Guardian was exercising its' right under ERISA to extend their review period by up to 45 MORE days and required MORE information from my health care providers.  

Folks, as you can imagine, I am beyond frustrated with this entire process.  I feel that I have done everything "right."  I am med compliant; I attend my scheduled doctor appointments; I provide Guardian with updates every single step of the way.  I reached out to two of my specialists to ask whether they would complete the additional form that Guardian supplied.  Unfortunately, my rheumatologist declined to do so because she does not perform that level of mobility/physical capability testing and besides, she is retiring within the next month - so it would be impossible to see her before then.  I am anxiously waiting for a response from my geneticist.  In the interim, I plan to email a copy to my local physical therapist's office to see whether they would be able to assist me with completing this additional paperwork.  

Social Security Disability (SSD)
I initially applied for Social Security Disability (SSD) to help offset payments that I expected to receive from Guardian (70% of my salary).  This is a common practice in the disability insurance arena - apply for both - the private disability insurance and the government provided insurance.  Your private disability insurance benefits are reduced by the amount they expect you to receive from SSD. 

My initial application was denied - the letter stated that I was "not disabled under our rules." And, that "we have determined that your condition is not severe enough to keep you from working." 

I am in the process of re-filing for SSD utilizing an attorney from Schott & Mauss.  So far, I have been impressed by her professionalism and compassion. The average length of time that the State of Iowa is backlogged to hear cases (actually goes in front of a judge - if appealed that far) is 17 months.  Yep - you read that right - seventeen months!  That figure comes from https://www.ssa.gov/appeals/DataSets/01_NetStat_Report.html.  Ridiculous!  

I'll play the same tune again - man, oh man, am I ever frustrated with the whole process and systems.  I feel it truly penalizes those who are already in a bad way.