Tuesday, February 8, 2011

Shhhh! [Part 2]

Okay, so the doctor with whom I had an appointment on the 23rd turns out to be a quack.  I cannot tell you how badly I took that news.  There were numerous red flags, and to mix some good metaphors, the icing on the cake was being told that there was a good possibility that I could come home with the infusion pump and do the subanesthetic ketamine treatments by myself.

Ummm, okay-y-y.

I kept turning up other things and can only say that I spent a lot of time bursting into tears as I watched my chance at getting some real relief slip away.

Enter Jim Broatch, Executive Director over at RSDSA.  I sent out a Hail Mary email to the organization, and he wrote back with the name of another doctor I might try. 

I have to say... this new doctor does not check out as... what?  Pristine, I guess. He has had action taken against him in the past for lying on an application.  But he is actually a rocket scientist, so he is at least interesting.  Really!  He was an aerospace engineer originally...  Moreover, my friends, he has hospital privileges and is on the staff of a famous rehab hospital.  He's board certified and is included on my insurance's provider list. 

The first dood wasn't on that list and had no privileges anywhere.  His former partner left a patient brain dead a few years ago when he interpreted an O2 sat monitor alarm as being the alarm's problem... He just replaced the monitor without checking the patient.  [Reportedly, the nursing staff was having a collective cow at that point.]  Even after replacing the monitor, then finally realizing the patient was, indeed, coding, he failed to get him to the hospital in "a timely manner."  Worst of all, though?  He claimed people were out to get him because he (the doctor) was recovering from cancer.  Uh-huh.  Right.  That would explain the other 5+ malpractice insurance settlements as well.  I tell you, if a physician is impaired because of serious illness, I kind of expect him or her to recuse themselves from active patient care.  But that's just me...

Anyway, the first dood won't admit that this friend of his, who lost his license, is on staff at his facility -- but I managed to somehow talk to the guy on the phone there.  Same guy outlined the "take-the-ketamine-home-with-ya" bizarro program.

No, thanks. 

Fred was fairly smirking, which hurt my feelings. 

And when I told him I had a new, more better lead?  He looked crestfallen.

I don't feel much support for this.  It feels very lonely, scary.  I know I am being silly, but crapola!  There is NO other treatment available to me beyond polypharmacy, and besides not working very well, that just sucks. 

So... I am waiting for a call from the Hail Mary doctor that Jim told me about.  As a result of an immensely stressful couple of weeks and abuse of the old body, I am in a high pain period. 

I saw the ophthalmologist yesterday.  I dreaded it.  He wanted to see me, on average, every three months, as I have glaucoma.  So I waited two-and-a-half years.  What?  I was busy having surgery after surgery, infection after infection, fever upon fever, and so on.  You know the drill.  Also, my vision was getting bad despite treatment and I just didn't want to face it.

My grandfather was blind, and I watched his sight decline throughout my childhood, until he was living in the dark.

I cannot imagine not being able to read.
Not being able to see Fred's face.

Back in 2002, when Dr. DooDooHead was fervently trying to kill me and left me on a respirator with failing systems due to a completely avoidable adrenal crisis, the only bright moment I had to hang onto was the vision of Fred's face as he bent down to me when I finally opened my eyes in ICU.  He had a smile like I have never seen since, a smile that absolutely blessed me and made me want to fight, and live, because I wanted to be with that man, forever.

I have cataracts in both eyes, my eye guy said yesterday, and my pressures were both over 30 -- historically, they hung out in the low 20s.

The redeeming feature of my life right now is that worry will accomplish nothing.  It won't cure my infected bones, the massive inflammation throughout my body, the pain, the fractures, lupus' nefarious effect on kidneys and heart muscle.  It won't make my legs work, or my hands.  Worry won't make ketamine heal me, and worry won't allow me to pick a doctor with the right bright ideas. 

It will only make the pain seem worse, and the troubles, insurmountable.

Much better to remember that beaming face, enjoying his company while I knock out those ADLs that make life so incredibly meaningful.

Look, Ma!  I dressed myself today...

Sorry. Don't fret -- this pity party will be over before I bring out the first tray of hors d'oeuvres.

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