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August 2016 Update

So, it has been a little while since I have posted an update.  A little bit has been going on since then.

Back in April of this year we had to give up our house because we didn’t have SSDI or LTD approved and we were living off of savings.  We were lucky enough that Jessica’s parents were willing to take us all in so we didn’t end up on the streets.  The hard thing was looking at applying to financial assistance services and having to check that we were homeless because we didn’t have a home.

Just before making that move I started having seizures and paralysis.  After all the testing we found that they are PNES seizures and my last post was about that.  So we were able to finally get my SSDI approved in June, and start receiving monthly payments in July.  This allowed us to start looking for a home using SSDI and savings to make that happen.  Because we don’t have any steady income other than SSDI, which isn’t much, we had to pay a month’s rent in advance to secure a rental.  The nice thing is knowing we will definitely have a place to live for one year, but the hard thing is writing the check a year in advance.

During this time we also filed our appeal with out LTD insurer and are in the middle of that process now.  We are hopeful that they will approve our claim and that will allow us to be able to pay our bills with my disability payments and not have to drain our savings even more.

After some research we also discovered that since I have been approved for SSDI, that I should also be able to get benefits for the kids and possibly Jessica.  We have an appointment next month to go into the office and talk to them about it.

The really frustrating thing this week is that I ended up in the ER again with a Mollaret’s Meningitis flare up because I have surgery to remove the cyst on my head.  I am positive that having the cyst removed was why I had the flare up.  The flare was so bad, I didn’t have enough strength to get to the car and we have to call an ambulance to take me to the ER.  Thankfully I have great doctors here and the ER doc didn’t force me to have a lumbar puncture again because he said we already know what it is.  And my neurologist made himself available to speak with the ER doctor even on his day off.  I am really lucky to have some really good healthcare professionals here.

It really is difficult dealing with so many health issues.  If you were to see me out in the neighborhood going on a walk with my family you would think I look fine, but you wouldn’t see the inner turmoil that is always going on.  Invisible illnesses are just as bad, if not worse, that visible illnesses.  Please don’t judge people without knowing their situation.

Life’s Hard; Be Kind.

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