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.

Hydrocodone with Acetaminophen and Phenobarbital Voluntary Recall by Qualitest Pharmaceuticals

Most of the time, I confess that the various medication recalls don't seem all that alarming. Not this one! Hopefully, anyone with the involved drugs will recognize that the pills do not seem right and will doublecheck the names and dosages...   

The American Pain Foundation has joined in spreading the word by eAlert:
Qualitest Pharmaceuticals Announces a Voluntary Recall of Hydrocodone with Acetaminophen and Phenobarbital

Safety Alert: Voluntary Recall
February 8, 2011
Qualitest, a generic drug manufacturer recently acquired by Endo Pharmaceuticals, Inc., issued a voluntary recall of three lots (11,000 bottles) of its hydrocodone with acetaminophen product on February 5, 2011. One bottle was found to be mislabeled, causing the medication to be identified as phenobarbital. According to the manufacturer, the error was discovered as a printing error and immediately corrected. About 5,000 bottles were found in the warehouse prior to pharmacy shipment which leaves 6,000 bottles out in the marketplace. Qualitest and Endo Pharmaceuticals, Inc., notified the Food and Drug Administration (FDA) and wholesale and retail pharmacies.

If you are taking generic hydrocodone or phenobarbital, please check your lot numbers immediately. These lots were distributed between September 21, and December 29, 2010, to wholesale and retail pharmacies nationwide (including Puerto Rico). Affected lots are:
  • hydrocodone bitartrate and acetaminophen tablets (10mg / 500mg): Lot numbers T150G10B, T120J10E and T023M10A
  • phenobarbital tablets (32.4 mg): Lot numbers T150G10B, T120J10E and T023M10A
Lot numbers can be found on the side of the bottle. Hydrocodone bitartrate and acetaminophen tablets are large (approximately 16.5 mm in length), pink capsule-shaped tablets with 3600 imprinted on one side, and V on the other. Phenobarbital tablets are small (approximately 6.4 mm in diameter), white, round, scored tablets with 5012 and V on one side and plain on the reverse side.

As a result of this mix-up, individuals may unintentionally take hydrocodone and acetaminophen tablets, instead of the intended dose of phenobarbital. Unintentional administration of hydrocodone can lead to serious adverse events including respiratory depression, central nervous system (CNS) depression, coma and death, especially in individuals who do not take opioid analgesics on regular bases or when it is combined with other CNS depressants. Unintentional administration of acetaminophen in excess of the maximum daily dose (3-4 g/day) may result in liver toxicity in individuals who take other medications containing acetaminophen, individuals with liver dysfunction or people who consume more than three alcoholic beverages a day. Additionally, missing doses of phenobarbital could result in loss of seizure control for those with seizure disorders.

Individuals who have these lots in their possession should:

  • Stop using the product and contact Qualitest at (800) 444-4011 for disposal and reimbursement information. The lot number can be found on the side of the bottle.
  • Contact the FDA and report if you have had any adverse reactions like loss of seizure control, excessive sleepiness, difficulty breathing, nausea, vomiting or itching. Adverse reactions or quality problems experienced with the use of this product should be reported to the FDA's MedWatch Adverse Event Reporting program online at www.fda.gov/medwatch/report.htm; by regular mail to 5600 Fishers Lane, Rockville, MD 20852-9787; or by fax to (800) FDA-0178.
  • Notify the pharmacy where this medication was filled and report that you are in possession of an affected lot.
  • Notify the health care provider who writes your pain medicine prescriptions and ask for guidance.
  • Notify your insurance provider should a new prescription need to be written, so that it will be covered.
  • Consumers with questions may contact Qualitest at (800) 444-4011 for more information.

To find out more about the American Pain Foundation and its efforts:

Contribute your voice to the 10,000 Voices campaign.
Please check out our newly launched PainSAFE™ (Pain Safety & Access For Everyone) website.
Support our efforts by donating to the cause. Donate Now.
Keep up with us on Facebook
Follow APF on Twitter at for the latest pain news and information and at www.twitter.com/painadvocacy for information on advocacy, policy and public awareness activities.
Get involved by using our online Advocacy Toolkit
Visit the APF Action Network site to learn what advocates are doing to build the movement for better pain management and get involved!
Visit the Exit Wounds site to learn more about our Military and Veterans living with pain.
Join PainAid, our online support community.

Sunday, February 6, 2011

Sarah Palin Battle Hymn

Uh, I found this lying all innocent-like in the middle of a blog post over at Shadowfax's place, Movin' Meat

This is the warning he gave and which I echo and only slightly modify:

Use caution before deciding to watch it. Remember, what is once seen (or heard) can never be unseen (or unheard).

Written-Tom Dempsey
Vocal- Gary Mcvay

I dunno who the chick is...

Pray and Fast for Kate on Monday, February 7

Kate Mcrae's PET scan is scheduled for Tuesday, February 8.  This brave seven-year-old has a rare and aggressive form of brain cancer that has returned despite surgery, chemotherapy, and radiation.

In her journal on CaringBridge, Kate's mom Holly has shared how hard this time is, how many decisions need to be made, and how they continue to pray for a miracle.
We have been contacting various healthcare specialists around the country researching potential options, as Kate's healthcare team does the same. If things would proceed in an undesirable direction, we will need to be making rather informed, but quick decisions. We continue to cry out for healing for our baby. It would be nothing short of miraculous for the PET scan to come back not indicating cancer. We are boldly praying for that.

Kate's father Aaron has asked for those who are willing and able to join them tomorrow in a day of prayer and fasting.  As always, this faithful couple has imbued their prayer with specifics, something that has always delighted me and been a real help when storming heaven on behalf of Kate.  I'm pretty sure God finds my efforts much improved when the Mcrae's needs keep them focussed and appropriate.  Aaron writes --
Here are a few requests for those who will partner with us:

For Healing… for Kate’s complete healing from top of her head to her toes
Psalm 107: 19 Then they cried to the LORD in their trouble, and he saved them from their distress. 20 He sent forth his word and healed them; he rescued them from the grave.

For Wisdom… for Holly and I, for the doctors, and people we consult with
Colossians 1:9 For this reason, since the day we heard about you, we have not stopped praying for you and asking God to fill you with the knowledge of his will through all spiritual wisdom and understanding.

For Jesus to be Glorified… for Christ to be seen as POWERFUL & to be praised
John 11:4 Jesus said, ‘This sickness will not end in death. No, it is for God’s glory, so that, God’s Son may be glorified through it.’
Again, I want to thank the countless people who have prayed and encouraged us for some time. We would be honored if some of you could join us in this day of seeking God in prayer and fasting. Please pass this along and ask others. If you need some guidance in fasting, I have found this site to be helpful:  Awake21 particularly the ‘Prayer, Fasting, and Personal Devotion Guide.’

I really appreciate Aaron and Holly continuing to minister in the middle of their pain and hurry -- I appreciate them telling us exactly what we can do, providing resources, providing scriptural references. I am not exactly fertile ground for much of this, but I always hope for a time when sarcasm and an ironic world view will ease. Until then, I'll just do the best I can. If you, too, are uncomfortable and inexperienced with prayer and fasting born from beliefs so fierce and necessarily literal, join me tomorrow and let's try to shed our smart-assed ways.

Being dumb before God can't be anything too new.

All we gotta do is remember Holly and Aaron, and their children Olivia, Will, and most especially, Kate.

Will, Aaron, Holly, Kate, Olivia

From The TomKat Studio