Bad news…

The news from the doctor was not good.

Linda and I know stress.   Thanks to the state of Tennessee we have been separated for over year and a half after 34 years of marriage.  When Tennessee did not expand Medicaid the only way Linda could keep her insurance was for us to separate.   The story has been told in depth many times on this site.

We joke (better than crying) that we will never suffer from post traumatic stress syndrome because neither of us see any way to get “post.”

Life may never be the same but what couldn’t get worse has gotten worse.   Over the last 10-12 weeks her seizures have gotten much much worse.   She has had multiple falls and narrowly missed serious injuries more than once.  There has been multiple ER trips.   Several of the falls have been on her head. She has bruises all over her. She looks like I have beaten her.   Badly.. 

We live 25 miles apart and I no longer see her every day.   I have had periods where I have been unable to see her for as many as 3-4 days.  We live in poverty and sometimes I just can’t put gas in the car.

It is getting dangerous.   Really dangerous.    There is no one there to catch her when she falls.  There is no one there to make sure she is safe.   She has been told she qualifies for a medical caretaker just that it can’t be me.

Today was a long awaited  neurologist appointment.  Her neurologist is considered by most the best in Knoxville and a lot was riding on this visit.

He told her no medicine was helping the seizures. Her blood levels are fine. She has tried lots of different meds and what she now takes has been the best. He at least implied it will get worse. One seizure tends to lead to another. Seizures are never stable. It is either getting better or getting worse. It isn’t getting better.

Basically he said your seizures are a life problem. They are very responsive to stress and you live with unmeasurable stress.

Linda is very upset . I really think she has known for a long time it was about far more than medicine. She wonders what is she to do if the worse happens and no one is there. I remember the seizure years ago where she fell down a flight of stairs and literally broke her face. And then I try to imagine it with no one there to help and I want to scream so loud. So damn loud…

We talked about plans this morning. Bills not to pay… Ways to get more gas money. More importantly we talked about me finding a way to move closer. We might know an option but it takes money I don’t begin to have.

Over the next 8 weeks I am going to try and come up with 800-1000 dollars and hope I can move on that. I hope to start a gofundme account tomorrow and work on a couple of other angles also.

We will pray and ask that you continue to keep us in your prayers. If nothing else works I will swallow my pride and beg.

I keep hoping somehow the state will move towards health care expansion but what do you say to legislators who see everything about politics and nothing about people. But even if they do that is two years away and doesn’t help now.

I am probably looking at it wrong and it probably sounds stupid and selfish but what I really wish I had was some marriage equality. Our marriage has put my wife’s life and welfare in danger. How very very wrong.

The news was bad but tomorrow is another day. This has been a most bad day… Been a lot of them lately. So many people have been helpful and supportive and we are so grateful.

Hopefully better days are ahead. I am ready….


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