Now For the Boring Bureaucracy

I spoke with my social worker at my transplant center today.  He was very helpful with clarifying a few questions I needed to ask about things I had mulled over recently, including if & when I should start to apply for federal disability.  He recommended that I start my application for Social Security Disability now. Fun, Fun…let the hoop jumping commence.

I don’t mean that to be negative or snarky, but this to me was the thing I was procrastinating on now for good reason.  I have known several women with LAM that have filed & their results are mixed. Some have gotten immediate approvals, others needed extensive appeals with lawyers.  This is another case where I don’t have a true sense of which way this is going to go.

That application (even though I started it online because it gave me the option to) took me the better part of the afternoon.  It felt really redundant at points.  Even with all my savvy I’m not sure I completed it right. Yet I tried to complete it to the best of my ability (& patience).  I still have to supply some wage documents so I’ll go down there to the local Social Security office on Monday & give them the information & get more clarification on if there’s anything missing that they might need.

I’m not sure I have all the medical records they need yet, since I haven’t gotten my results yet, but we’ll see. There were a few parts of the application I was told my doctor would need to complete (thus my impetus for starting it today. I was hoping to download an application so I could take that down there to give to him at my follow-up to sign off on) but unless that’s only on the physical paper application I did not see that section referenced specifically on my online application I completed.

Maybe I should have saved myself the hassle & just made the appointment with the office to start with? Who knows.  I’m sure if I did something wrong then I’ll hear about it in the way of a denial or some correspondence.  The system itself was intuitive as far as completing the application went but it was still fairly confusing because I really seemed to have a lot of redundancies but I didn’t want to remove them for fear of leaving off critical information or details.

I couldn’t add a lot of extra detail to my situation because I still have a lot of unknowns.  I also did not see posted any criteria for what my bottomline scores (until I really did a deeper dive looking at links to include in this post) or what they say qualifies me (diagnosis wise) but I guess I’ll find out & will enlist help as I need it & go along.

After that I needed to take a brain break & went out & ran some errands for the rest of the afternoon.  Then later I came home & completed some preliminary fundraising forms that I had hoped to get done earlier, since I had also gotten a ballpark figure of how much I should possibly raise.

More on that later… I’ll make this post mercifully short because I’m sure it’s not just headache-inducing for me to do, probably headache-inducing to read as well.








2 thoughts on “Now For the Boring Bureaucracy

  1. Hey Nkki, Sorry I haven’t responded to your follow until now. I am having computer issues right now. I am following you as well. I am very empathetic with your health situation and your trying to get disability. Hold on and take courage it will all take place. Keep in touch and let me know how you are doing. With blessings, Sandy O


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