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May Update

So to start my May update, my ability to go to the Centre for Neuro Skills went away just like that.  I was told I was approved a little over a week ago and was getting ready to buy plane tickets, and everything, when a few days later we talked to someone else, and insurance, and found out that wasn’t actually the case.  CNS in California, because CNS Dallas was full, was going to be where I went, but they have to be licensed as inpatient adult skilled nursing.  My insurance plan, for skilled nursing, requires that I have a 3 days stay in the hospital prior to going to skilled nursing care.  If they were able to license as inpatient rehab, then it would possibly be covered.  But CNS is also out of network, which would have required us to pay $54,000 per month upfront and then see what insurance would reimburse them, then get that amount back from CNS.  Since we are living off of savings and still fighting for LTD and SSDI benefits, that isn’t a possibility.

So, I am scheduled to start rehab at The McGrane Center at Kootenai Health next week.  The rehab there does not appear to be anywhere near as intense as it would have been at CNS, but at least I get to stay home with my family and probably go on the trip to San Diego in July for Jessica’s writers conference.

I have also been starting to have seizures and have had an EEG and ambulatory EEG to try to figure out what is going on.  The EEG was abnormal and showed some brain damage to the left temporal lobe, consistent with TBI.  The ambulatory EEG was scheduled because the seizures were getting more severe and more frequent.  Thankfully, while I was wearing it for 72 hours, I had several episodes.  Dr. Hampton messaged me today and will call tonight to discuss the results.  From the way the episodes are presenting I feel like they are probably Psychogenic Non-Epileptic Seizures (PNES), but I should be able to find out more information tonight with the call with my neurologist.

I also found out this week that my Idaho Disability Determination Services (DDS) person I was working with no longer works there.  I called because I wanted to get a status on my case and my adjudicators name was no longer in the system.  When I talked to the operator they told me that she doesn’t work there anymore.  The transferred me to my new adjudicator and we talked for a little bit.  I am hoping this is the last time I have to change adjudicators.  These are all of my diagnosed conditions:

  • Mollaret’s Meningitis (MM) | Rare lifelong form of viral meningitis
  • Traumatic Brain Injury (TBI)
  • PostTraumatic Stress Disorder (PTSD)
  • Major Depressive Disorder (MDD)
  • Generalized Anxiety Disorder (GAD)
  • Psychogenic Non-Epileptic Seizures (PNES) | Awaiting official diagnosis
    • Ambulatory EEG showed no abnormal discharges during my seizures, confirming psychological issues which is PNES.

Most of those conditions are listed on the social security approved conditions list, from my understanding.  I truly don’t understand how I haven’t been able to be approved yet.  Any one of those by themselves could potentially garner approval.  I really hope this new adjudicator can see the severity of my situation and make a positive determination soon.

We also consulted with an attorney this week about my long-term disability (LTD) appeal.  We were hoping to find out if we needed an attorney or if we could just appeal ourselves.  It comes down to us appealing on our own with the new information and hoping for the best.  If I don’t get approved then, we can still sue.  Here is what we found out about LTD insurance:

  • They are governed by ERISA, a federal law intended only for pensions.
  • The insurance industry got themselves inserted to be covered by this law.
  • This law allows them to act in bad faith and not have any penalties.  NONE, whatsoever.
  • State laws before ERISA, penalized insurance companies for acting in bad faith, and should be returned.
  • If we end up having to sue them under ERISA, worst case scenario is that they have to actually pay out the claim.
  • Lawyers more than likely won’t take your case, unless the payout is large enough that they will get a decent percentage back.

So for any lawmakers reading this, you need to fix this issue with ERISA.  It allows insurance companies to shit on claimants without any recourse, so they just almost always deny because there is no penalty.

So, my stress level is crazy high because SSDI is still going on and I basically have to start over again, LTD probably won’t approve my claim and my benefits are probably not high enough to get an attorney to take my case, I can’t go to my rehab facility because insurance won’t cover it, and I am now living with my in-laws because we don’t have enough money to live in our own home anymore.

I am doing my best to try to be positive, but it is really hard when we are having to deal with all of this.  Just remember, you never know what someone is going through.  If you were to look at me you would think I am fine, but inside I am very definitely not.

Life’s Hard; Be Kind