Tuesday, January 10, 2017

Misery

The misery of Shelbie's mystery diagnosis continues.  Poor girl is miserable and spends much of her days and nights in pain, discomfort and crying.

At dinner last night, she had a little melt down and said, "You always had the answers!  You always knew what was wrong and how to fix it.  You took care of us and I never worried because I knew you could do it but now you don't have any answers!  You never do anything to fix us." And with that, you could have heard a pin drop.

What do you say to that?  I can't argue with her.  I use to have all the answers, sometimes before the doctors had all the answers.  There always seemed to be something I could do to make them better or at least bring them an acceptable degree of emotional if not physical comfort.  It's too complicated anymore.

This morning, I had a chain of text messages from our Immunologist, Dr. G.  He is scratching his head as well and we both have similar thoughts on where this is going; either her body is rejecting the plasma transfusions and attacking itself or her autonomic nervous system is completely disoriented.  I'm torn between the two.  It certainly seems as though nothing in her body is being regulated right now.  She bounces between a fever of 101 and a low temp.  Her counts are slightly elevated for her but still well below normal.  Platelets are dropping.   Blood pressure sky high, resting heart rate over 100. We are a week into this.

Though another week of this seems like a long time, the plan is, I will take her to Utah next Tuesday and she will meet with our Immunologist and a new doctor he has lined up.  She is one of kind from what I understand.  She is a NeuroImmunologist and specializes in diseases of demyelination, and paraneoplastic neurological syndrome as well as cancer and other disorders of the nervous system.  I had no idea cancer could attack the nervous system!  Sheesh.  Upon reading her credentials, I can see that she might be another piece in our 1,000,000 piece puzzle.  She seems like someone who can help us understand the deterioration of Shelbie's brain they discovered last November.  She also works with Arteritis or inflammation of the arteries.

Sounds like I'm about to get an education I didn't really sign up for.  But, at the same time, it feels like everything is going according to plan...someone's plan.  The appointment with the Neuroimmunologist was made in December and at the time they called with the referral, I didn't really think it was necessary and quite frankly, I was sick of Utah and traveling and I thought it strange that Dr. G didn't even tell me he was going to send her to another specialist.  We went with it. So it goes, Shelbie's pattern of symptoms over the past couple of weeks definitely fits the bill to see this new doc.  Ugh.

I have been getting daily calls from Spencer's Cardiologist wanting to see him.  It's hard to stomach the thoughts of driving to Utah in the winter let alone at all!  But they are getting frustrated with me because I keep putting it off and they are concerned as usual.  So, I tried to make it for Tuesday and Wednesday since we will be there but no.....Friday it is!  Arghhh....

And to wrap up our tumultuous start to the year...I had this feeling of discomfort in the pit of my stomach that something was not right with our insurance.  My insurance guy up and quit and supposedly turned us over to some other guy with a different company but the new guy doesn't return calls and has neglected to do his job, so I've taken on an insurance hobby while I try to find someone who actually wants to do their job!  (Insert eye rolling)  I received three letters from our insurance company and they kept changing the name of our Network.  A long and angry phone call yesterday, revealed that sure enough, the State of Utah is out of Network.   Not only that, the doctor we go to that is .5 miles from my house...OUT OF NETWORK!  I should have guessed since the name of my Network is RealValue...That translates into- Really, we aren't covering anything of value!

I really want to punch someone.  I know, quiet, meek, mild me is getting fed up!

I am hoping that a very patient and apologetic, innocent bystander at the "Said" Health  Insurance Company has sorted things out.  I didn't really give her any options but to get us a plan that covered the University Hospital.  The best question I've heard all decade..."Why can't you just see the doctors in your own town?"

Stick a fork in me...I'm done.  Over and out!  Sick to death of the constant fight and drain on my resources.  The thought of doing this for one more second makes me think I would rather be committed to an insane asylum so someone else can be in charge and I hear silver buckles and long sleeves are the 'LOOK' this Spring.  UGH>>>




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