Wednesday, January 16, 2013

Last week I wrote of Kelly's continuing problem with jaw pain.  I said that I was afraid my concern combined with my inability to do much (last week was chemo week; enough said) was causing confusion over her care.

I said as much to Casey and Cathy, and whether or not it was is a moot question now.  Jerry, I, and half the Ranch are frantic over her distress.

Kelly has always overridden and denied pain, which is not uncommon among people with intellectual disabilities.  She'll soldier on in silence to the point that it's only when something has become obvious and extreme that she will say anything at all.

At the same time she is somewhat phobic about medical procedures, which is another reason she denies anything is wrong.

Yet she is in such obvious distress that all of us at the Ranch are wringing our hands.

Kelly has been diagnosed with temporomandibular pain, which means her jaw(s) hurt.  We know the bottom one hurts.  We don't know about the top one.  She reports "It feels funny."

Does it ache? Throb? Is it numb? Are pains constant, intermittent, deep, stabbing? Are they 1,2,3,4,5,or 6 on the pain scale?  I have asked the questions every way I know and I get, "It feels funny.  I want it normal."

Well, normal we understand at least.

What has caused this?  The mouth ulcer that caused her to chew on that side for two weeks?  The Botox treatments that allow us to help her clean her gums in that area?

Yesterday Laura and I took Kelly to see the oral surgeon.  Fifth appointment in three weeks: two dental, one ER, and one medical, plus yesterday.

I must admit we're used to the quick fix.  Growing up, Kelly was as healthy as any of my kids, and healthier by far than the first two, who made careers out of ear infections and producing strep germs.  We're not used to long, protracted pain.

"I want it gone on the cruise," she wails, which starts January 24.  I finally had to tell her it doesn't look like that is going to happen.

Dr. Buchanan, Kelly's oral surgeon with whom we've worked for years, gave us a long list of probabilities on what is causing this, and what treatments might be effective.  He was generous with his time and gentle in his concern. I have complete faith in both him and Dr. White, Kelly's dentist.

General consensus: my cancer is causing Kelly's jaw pain.

In other words, knowing that I have a serious illness has overloaded her ability to ignore her distress, and it is coming out in clenched jaw muscles, tooth grinding, etc.
Dr. Buchanan advanced many possible theories as to cause, but hands down agrees with Kelly's dentist that there is most likely no organic cause of the disorder.

For now we will pursue a splint to help prevent night grinding, pain relief (against which even Vicodin seemed not to do much), massage therapy, and possibly physical therapy.

We're getting an assessment this morning at a PT practice that works with people with TMJ disorders, and are looking for counseling resources.  We will pursue any and everything that might offer relief.

Meanwhile I'm encouraging Kelly and staff to get back into the swing of work, exercise, and activity.  People on the Ranch who have struggled with this disorder report that it's a very hard pain to ignore. 

I hate it when we do all we can, and it isn't enough.  I hate for my child to hurt.  I want to slay the dragon and make her happy. 

For now, hugs.

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