• Kate

So much paperwork!

Note: I wrote this post last week but didn't publish it at that time- figured it was too boring-still is I guess, but it is my reality at the moment. It is backdated to reflect when it was actually written, with some real time updates of course. 


Seems like everything with a deadline happened all at once. First, my short-term disability ended on 8/31/18 and my application for long-term disability was thankfully approved. Along with that approval, however, I received time sensitive paperwork from my representative and learned I have to apply for social security disability as part of their requirement for continued disability payments. I have not started that application yet, really not looking forward to it, especially since it is just a formality and it will likely be denied anyway-yuck.


At the same time, the vacation donation salary I was receiving from work ended, and I am no longer on payroll. So, technically my employment could be in jeopardy since I no longer qualify for Family Medical Leave Act (FMLA) and am officially on unpaid leave which does not protect me legally. With this in mind, I worked with human resources, my supervisor, and was referred to the equal opportunity and access division to apply for official American's with Disabilities Act (ADA) accommodations so that my leave can be legally protected (yet more time sensitive documents I had to complete). I have submitted the paperwork, but have not heard yet if I have been approved. As of 9/28, I received an email asking when I could submit the attending physician statement. According to the initial instructions, the ADA office was supposed to send the attending physician request to my provider as soon as I completed the releases of information, which I did over a week ago. Looks like they dropped the ball, and I emailed them to let them know I was told it was not my responsibility to do that portion. We will see how long it takes now to be approved 😒


To be clear, my job has been very generous in working with me and they say not to worry and that my job will be there when I am ready to come back, but it doesn't hurt to make sure I am protected in every way possible just in case. I applied for ADA accommodations with school too (back in March), which allowed me to take an incomplete in my spring class, and just gave me some much needed flexibility while going through treatments.


Let's see, what else? Oh yeah, I actually went in and met with one of the amazing cancer care center social workers to discuss all of this paperwork stuff. She helped me get yet another disability form for work filled out and signed by my oncologist. Andy's FMLA paperwork was due again too, so I turned that in as well and will have to physically go pick it up next week since it is time sensitive and Andy's employer does not allow faxes from my hospital for some reason? Dumb. I went to the hospital twice this week for non-medical reasons!!


I'm not sure if I have mentioned this in a previous blog post or not, but I have applied to be a part of a clinical research study at the National Institutes of Health (NIH) in Bethesda, Maryland. This is a study related to my CDH1 genetic mutation. Because the mutation is so rare, the study is trying to enroll everyone possible with this mutation, and provide medical care to them in the hopes of developing better screening methods and updating treatment guidelines based on data collected from the study. It is considered a longitudinal cohort study which will follow individuals for life (for all you public health nerds). Well, I worked with my parents to complete a VERY detailed family history questionnaire. Then, the other day I received a FedEx package including the official application and informed consent which I have to finish and send back. Once they receive it and review all my information, I am told I will be accepted. I found out about this study after joining a private facebook group aimed at connecting individuals with the CDH1 mutation. It has been really informative and nice to know there are people out there going through some of the same things as me. Also kind of scary, because many of them have a strong family history of gastric and breast cancer and it is sad to hear them talk about all their struggles and family member's deaths related to this mutation. Yikes!


This month marks the first fall semester in which I am not registered for any classes in 2 years! But, you know what that means?! Yes, you guessed it, more paperwork! I had to complete loan exit counseling for my federal loans because I had a hold placed on my academic account due to not being enrolled this semester. I also emailed back and forth with my academic advisor to ensure I can still apply for graduation once I finish up my master's project without any problems due to non-enrollment from this point forward. I did this following my receipt of an email from the academic office stating I may not be able to apply for graduation through my program since I was no longer enrolled. She assured me there will not be an issue, but you can bet those emails will be saved just in case something goes wrong in the future.


As of 9/28: I picked up Andy's completed FMLA paperwork (yet another trip to the hospital for non-medical reasons), and received paperwork from my life insurance company to apply for disability status. I called and learned it is optional paperwork, which I will be opting out of at this time...I could potentially save about $9/month, but that doesn't even seem worth my time and effort at this point. The paperwork is intense! NIH admission paperwork has been completed and submitted via Fedex. 

If you'd like to get in touch, email me at mypinkgenes@gmail.com.

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Take great care!

Kate

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