Sunday, November 29, 2009

The McDonald's exercise program

I'm getting fat. Clothes that used to hang on me are now tighter than a sausage casing. I've always lived with a rough understanding that change in waist size is proportional to daily caloric intake minus calories burned by resting rate of metabolism minus calories burned through exercise. As I age, my rate of metabolism is slowing. So if I want to continue to fit in my clothes, I need to watch what I eat (diet), put on muscle mass to maintain my metabolism (weight training), and/or get my fat ass off the couch for a few hours each day (cardiovascular exercise).

I've never been a big fan of dieting. I like food, and food likes me. But lately I've noticed that I've been eating as an avoidance behavior. If there is something I don't want to do, I'll use meal/snack preparation and consumption as a way to put it off. Working from home amplifies this tendency.

In my twenties, I would regularly lift weights at the gym at work as a way of breaking up the day. When we moved to San Francisco, I joined a gym in the city, but only used it once a year on average. Now, my only weight bearing exercise is lifting BR when transferring him between his bed and chair.

I've never been an enthusiastic player of team sports, preferring cycling instead for heart pumping, fresh air gulping exploration of roads less traveled. I used to ride in multi-day charity events, and loved many aspects of the way I felt after a day in the saddle. These days, my worsening allergies have taken the excuse lead for why the bicycle sits in the garage collecting dust.

It's a perfect storm. A slippery slope of bad behaviors reinforced by a litany of excuses. Well I'm putting the excuses away for the holidays, and am putting some personal focus on my ample yet adorable waistline. If there is one thing I hate more than diet and exercise, it is clothes shopping.

One of my initial motivators will be the Lights of Love 5k charity run taking place in our neighborhood this coming Friday. I have no intention of running the distance, and instead will speed walk alongside BR as he opens up the throttle on his wheelchair. The event benefits the local Ronald McDonald House, which provides housing next to the children's hospital for families of the critically ill who are far from home. I just love the irony of kicking off my body shaping efforts at a McDonald's sponsored event.

If you would like to sponsor BR and me, the Public Service Announcement above has a link to the donation page. You'll be supporting a great organization.

Friday, November 27, 2009

Mama said to make it really wet

BR makes cornbread dressing using the family recipe.

Wednesday, November 25, 2009

Thanksgiving wishes

I was reading Patrick's post on how Thanksgiving has marked so many changes in his family, and it really struck a chord. It was two years ago just before Thanksgiving that I wheeled BR into San Francisco's Davies ER with a neurogenic bladder. That stay, and the subsequent bout with sepsis lasted almost a month.

Then last year, BR had an abscess in his mouth caused by tori. His bite hasn't been the same since they were removed, making mealtimes an extended event.

This year, a sacral insufficiency fracture heralded the holidays. Talk about ouch on ouch.

Yet still, we are in the kitchen making our favorite Thanksgiving foods. BR is on the phone getting the recipe for cornbread stuffing from his Mama. (You didn't really think those White Castles would last until Thanksgiving, did you?) I've made the broccoli cheese casserole. The turkey is thawed and ready for the morning roast. Add green beans stir-fried in bacon fat, roasted pecans, and brown-and-serve rolls, and we have everything to make Thanksgiving special. Except family.

No matter where you are. No matter what you are doing. No matter how you feel about yourself. You are loved and missed.

Thanksgiving Guilty Pleasure: White Castle Stuffing

OK. I've never tried it. But I do love White Castle hamburgers. My sister Karen and her husband Pete sent 16 burgers on dry ice from Illinois last week for our enjoyment (there aren't any White Castle's in Austin). Mmmmm.

So here's the recipe, which is copied from White Castle Shares Turkey Stuffing Recipe:
10 White Castle hamburgers, pickle removed
1-1/2 cups diced celery
1-1/4 teaspoon each ground thyme and ground sage
1-1/2 teaspoon coarse ground black pepper
1/4 cup chicken broth

Tear burgers into small pieces and place in a large mixing
bowl. Add celery and seasonings. Toss and add chicken broth.
Toss well. Stuff cavity of turkey just before roasting. Makes
about 9 cups, enough for a 10 - 12 lb. turkey. Note: Allow
one White Castle hamburger for each pound of turkey, which will
be the equivalent of 3/4 cup of stuffing per pound.

Tuesday, November 24, 2009

Interminable November

Tick. Tock. T i  c  k.    T     o      c      k.
Thanksgiving is almost here, yet I feel as if November started about three years ago. The trip to Houston, the car trouble, Halloween, even the trip to California -- they are all fading memories.

I have the week off. The company shut down as a cost saving measure. There's so much I want to do, but have yet to find the motivation. It's surprising how much my personal energy levels are tied to BR's. An old habit, I guess, and one whose time has passed.

So today I'm closing the web browser and attacking The List. Wish me luck.

Wednesday, November 18, 2009

BR reenacts a scene from Sixteen Candles



The doctor has put BR on high dosage vitamin D for two months after blood work showed he was about a quart low. He also had a bone density test this morning.

Bed rest seems to have helped the fracture pain some, but he still seems to be fighting an infection, as his skin is on fire.

Sunday, November 8, 2009

Sacral Bleu!

I was in a work call when I got the text message.

Dr. called. Will call back in 10. Please come down.

BR wasn't sure which doctor had called. When the phone rang, it was the Which doctor. The MRI showed a sacral insufficiency fracture (SIF), which would explain the new hip pain. These fractures usually occur in older women with osteoporosis. <Insert "BR gets all the lady problems" joke here.>

The doctor offered a couple options: bed rest or sacroplasty. The latter is a new procedure, and he is only one of two doctors that perform it here in town. He did warn us that the insurance company will likely consider the procedure experimental, and hinted at finance options should we decide to proceed without insurance approval.

From our insurance company:
Percutaneous sacroplasty is considered investigational and not medically necessary for all indications.

[...]

Standard treatment for SIF includes bed rest, limited weight-bearing activities, oral analgesics, and sacral corsets. Improvement of symptoms may take as long as 12 months.
The Which doctor says that even after the fracture heals, the pain may persist, requiring sacroplasty anyway. Other sources say that 90% of patients get better with bed rest and limited weight-bearing activities.

For now, I think we'll go the bed rest route, and look into treating BR's osteopenia, which was diagnosed a few years back, even before the MS. If the pain doesn't improve over the next few weeks, sacroplasty can still be performed.

Thursday, November 5, 2009

To be or not to be a vampire

BR just finished watching An Interview with the Vampire. Now he's out back smoking a cigarette and waiting for Lestat. Is Vampirism his last and best hope for a cure?

I'm coming out of my funk. BR's needs are more than usual, but not more than Jordan can handle for a week, and I need a break, so I'm going to California on Sunday. I'll just check-in every evening to see what the trends are, and let the neighbors know they may be called in for backup should something go wrong.

The hip MRI was uneventful. The technician said the results will be ready tomorrow.

And to prove that I'm feeling better, here's a little clip from the 2010 Desperate Divas competition.

Orange you glad you don't have implants

Saw the PCP yesterday. BR's still in a lot of pain, but was able to hold it together for the appointment. I don't know if it was the pain or the drugs, but I almost lost it when BR starting lightly hitting the doctor with his grabber. "You. Don't. Know. What's. Wrong."

He'll be getting an MRI of each hip joint this afternoon. "Don't you have an implant?" "No." "No spinal cord stimulator?" "Nope. It didn't work."

After I got BR to bed, I made groceries for the week. (If you follow that link, you'll never get those 10 minutes back. You have been warned.)

Come morning, I'll be calling our Blue Cross case manager to see if we have any coverage for skilled nursing until the trial. Not that we'll use it, but just gathering information.

Tuesday, November 3, 2009

Tough situation and tough decisions

With BR heavily sedated all the time, I'm falling into a terrible funk. I second guess all my decisions.

Is it time to call the doctor? I've decided yes on this one. I'm told I can call in the morning and get a same day appointment with his primary care physician.

Am I doing enough to avoid pressure wounds? I'm turning him every 3-4 hours during the day, and once overnight, and the process is excruciatingly painful for him. He has one sore on his tailbone that is holding steady at stage 1, down from stage 2 when he was having all the bladder issues.

He gets up for a few hours in the evening, but communication is slow. Often he'll just fall asleep in his chair.

Should I be checking him into a care facility until the Prialt trial in December? I hope the doctor has some advice for me tomorrow.

Should I be going to California next week? Jordan is coming back to care for him, but this isn't the same situation it was over the summer.

I'm trying to stay calm and seek advice from professionals as needed. But when I don't feel what he's feeling, when he has a disease that ends up being the root of so many problems that don't seem to be responding to treatment, it all just seems so futile. I fear we are on a crash course with the ER, and we both *hate* the ER.

Maybe the doctor tomorrow will be the "stitch in time" that I'm looking for.

Monday, November 2, 2009

Halloween


"Those damn Halloween pranksters."


"Wearing her heart on her cheek."


"You're not fooling anyone with that halo."


"Pardon me, Princess."


"Chicken meets Monkey. Film at 11."


"Don't encourage her."

Sunday, November 1, 2009

Hurry up and wait

Happy All Saints Day, y'all.

BR and I were expecting to be on our way back to Houston at this time. We were e-mailing (!) with the doctor last week, and he said he was available for the Prialt trial either the week of November 2nd, or the week of December 7th. Not wanting to wait whole month, we pushed for next week, and everything was looking good until noon on Friday, when the business office called and said they hadn't received insurance approval yet.

I called and left a message for our case manager at Blue Cross, and she called back to let us know that BR needed to have a psych evaluation before the trial could be authorized. Luckily, he had already done one for the Which doctor -- we just needed to get the paperwork to the right people. I left a couple messages with the Which doctor's office, and when I hadn't received a response by 4pm, I drove 30 minutes and sat in the waiting room until I could get confirmation that they had faxed the report over to M.D. Anderson. But I knew that we were already too late. There just wasn't enough time for the report to be reviewed by Blue Cross before the M.D. Anderson business office closed for the weekend.

It really is a shame. BR's pain is worse than ever. He has agreed to let me keep him pretty doped up so he can tolerate it. He's sleeping a lot and needs supervision when he's awake.

The countdown has started until December 7th.