The Holiest of Days

Every year around this time, we all take a break from our normal daily obligations to stimulate the economy by attempting to spend the same exact amount of money on each of our loved ones that they have spent on us.  The purchaser of the best gift earns the right to not feel guilty for the duration of the coming year, and the title, "The Winner of Christmas."

One of the benefits of being horribly broken is that I don't feel that much pressure to attempt a Christmas victory, and I was content to coast my way through this year.  Gift cards for everyone!

I hope you all had a good Christmas.  Mine was surprisingly good.  My parents came down for a few days with my brother.  We had a nice time together, and some excellent food.  My mom brought sour beef and dumplings.  It's a family favorite, and I got to have Gus and Uyen over to share it on Christmas eve.  There was also mocha cake which is another thing I don't get when my mom's not around.

Mocha cake preparation

On Christmas, we eventually got up and opened some presents.  There weren't a lot of presents but we enjoyed opening the ones we had.  I got what I asked for.

Stockings!

Jonathan opening a gift intended for me

My college roommate, Bobby, also sent me the most thoughtful gift I have received in years.  It was a collection of man-bibs made by his mom.  I have a lot of trouble keeping food off myself since I can't lean forward.  This is something I will definitely use.

Better than stuffing a towel in my collar

Later, Gus's family came back for Christmas dinner.  My mom ordered Maryland crab cakes from a place in Baltimore that ships crab cakes.  They're not cheap, but they were fantastic.  And once again, I got to share with the Careys so that was wonderful.  They do so much for me, I always enjoy it when I can do something nice for them.

The Careys

Getting ready for crab cakes

Gus got me a gift as well.  I had told him I wouldn't mind having an electric tea kettle so I could make hot tea.  So he got me one.

Hello Kitty

I've been enjoying tea all week.

My family is back home now, and I'm pleased to report that my pain was manageable while they were here.  I don't feel great, but I'm getting by.  Still looking forward to surgery.  Still taking it a day at a time.

Jalapeno Corn Casserole

My world famous jalapeno corn casserole is one of my very favorite things to eat, and recently, several people have asked me for the recipe.  So without further ado, here it is.

Ingredients

• 1 (15 1/4-ounce) can whole kernel corn, drained
• 1 (14 3/4-ounce) can cream-style corn
• 1 (8-ounce) package corn muffin mix (recommended: Jiffy)
• 1 cup sour cream
• 1/4 cup (1/2 stick) butter, melted
• 1/2 to 1 cups shredded Cheddar
• 1 jalapeno

Directions

Preheat oven to 350 degrees F.

Seed the jalapeno and chop fine.  Saute briefly in butter to take the edge off the jalapeno flavor.  Sauteing is optional.

In a large bowl, stir together the 2 cans of corn, corn muffin mix, sour cream, melted butter, and jalapeno. Pour into a greased 9 by 13-inch casserole dish. Bake for 45 minutes. Remove from oven and top with Cheddar. Return to oven for 5 minutes, or until cheese is melted. Let stand for at least 5 minutes and then serve warm.

Christmas Party

A couple weeks ago, my friend Becca suggested I needed to throw a Christmas party for my friends.  Gus liked the idea, so we invited a few of my closest friends, and set a date.  I didn't know if I'd be up for a long party, and I knew a lot of my friends had other responsibilities this close to Christmas, so we made it a dinner party with a relatively early end time.

Party planner Becca

The party was last night, and I thought it was a great success.  Mister Gus and I collaborated on a beef tenderloin roast with a delicious horseradish cream sauce to anchor the meal.  I made my world famous jalapeno corn casserole.  Gus brought Uyen and Evelyn along with some boiled shrimp with homemade cocktail sauce and steamed asparagus.  We whipped up a nice salad, and Becca brought some rotisserie chicken, veggies and some pie.  Mike and Sue brought some roast potatoes, and Ben and Kim brought garlic bread.  Cullen and Caitlin couldn't make it, but Caitlin picked me up some wine before they left for Michigan.  I wish I had taken a picture of my plate.  It was a fantastic meal.

Uyen, Evely, Gus, me, Sue, Mike, Ben, Kim, and Becca took the picture

We brought in some folding tables and borrowed some folding chairs.  Becca brought a few festive decorations, and I had a great time.  The meal was great, and so was the company.  I'm so happy my friends helped me set it up and clean up afterwards.  I obviously couldn't have done it without a ton of help.  Gus in particular was instrumental.

The other nice thing about having a party like this is that I have a ton of awesome leftovers.  I'm looking forward to those.

So the party is over, and tomorrow my parents and brother will arrive to spend Christmas with me.  That should be fun.  I'll let you know how it goes.

Better

The last couple months have been pretty depressing.  For the longest while, it has seemed like every day was worse than the one before, and there was no outlook for things to get better at any specific point in time.  Fortunately, in the last week, things have started to get a little bit better.

The day of my appointment with Dr. Dahners, I had no pain, but I was in quite a bit of pain the next day.  I decided I needed to do some experimenting to see if I could replicate my pain-free day, so I started playing with body position, and what I found was that if I avoid bending my hips, I can avoid most of the pain.  I had been sleeping half the night with my knees pulled up and my hips bent, and I think that was crushing the new HO bone fragments like nuts in a nutcracker.  So I started sleeping flat on my back all night, and I found I wasn't in pain when I woke up.

I have also been trying to avoid bending my hips in the wheelchair.  This makes it uncomfortable to sit in the wheelchair, but at least it's not excruciating.  I scoot my butt forward in the seat and slouch way down.  I let my spine do a lot of the bending, and in this way, I can avoid almost all the pain in my hips pretty much all day.  Unfortunately, this results in pain in my lower back, but I have to pick my poison, so that's the one I'm choosing right now.

So using my new techniques, I've been able to continue doing all the stuff I have to do everyday.  I have now survived another whole week since my last appointment, and I'm well on my way to hip surgery.

Speaking of hip surgery, it's amazing how much having a date for surgery has done for my outlook.  I finally have something to look forward to: a date when things should start to get measurably better.  I'm nervous about getting cut on, but I'm excited to finally start moving forward again.

My friend Bert sent me a very thoughtful gift this week.  It's a set of Star Trek The Next Generation Pez dispensers.  Bert is well aware of my fondness for Star Trek, and my LOVE of Pez, so it's a perfect gift.  Ben came over last night to watch some Star Trek and eat all the Pez.

The crew of the Enerprise as candy dispensers

Loading the candy

Appointment

I wanted to do this post yesterday, but there was so much going on I didn't have time.  I finally was able to see Dr. Dahners yesterday about my pain.  The pain in my right hip had gotten worse every day since Thanksgiving, and on Wednesday, it was so bad I spent most of the day in bed.  I couldn't work or carry on a lucid conversation because the pain was so bad.  Of course on Thursday at the appointment, there was no pain at all.

Gus was able to get a neighbor to watch Evelyn for the afternoon so he was able to come with me to the appointment.  I value his presence because he knows my situation better than anyone except me.  My friend, Ashley was also able to come up from Laurinburg to attend the appointment with me.  She is an excellent doctor herself, and it was great to have her there to take notes and help translate any doctor-speak.  Ashley's uncle Ed Campion also attended.  He's a pediatric orthopedic surgeon, and the head of orthopedics at UNC.  I've heard nothing but good things about him or Dr. Dahners.  So I had three doctors at my disposal.  It was a pretty full exam room.

Here are the highlights:

• My pain is either caused by HO bone fragments grinding in the joint or is a phantom pain sometimes associated with spinal injury.  Either way, there's not much they can do about it.
• The blood test that indicates bone creation is ongoing is called Alkaline Phosphotase.  My levels have returned to normal, and the HO fragments appear mature on the CT scan so I can have the surgery any time.
• Surgery on the first hip is scheduled for January 16
• They expect I will probably be in-patient at the hospital for only a couple days after the surgery
• They expect to put me on Naproxyn to prevent recurrence of the HO after surgery, but Dr. Dahners, Ashley, and Ed were all fairly vehement that I should not do radiation therapy.

My rehab doctor, Dr. Walker, was pretty adamant that I should have the radiation therapy, and the surgeons agreed that it is very effective, but the surgeons thought the cancer risk was unacceptable for someone my age. At the end of the day, it's my choice whether to get the radiation or not, so I'm not sure what I should do.  I really don't want the HO to come back even a little bit, but they say it's a lot of radiation, and there's a bunch of stuff in the pelvic region that doesn't react well to it.

In other news, my short-term disability ended on Wednesday, and due to the pain I've been in, I was forced to tell IBM I could not continue working part-time.  That means I have been separated from the company so I can be put on long-term disability.  It's not what I wanted to do, but since the surgery is coming up, and I'll have to stop working while I recover, I may as well do it now and have more time to rest and less stress while I wait for surgery.  Of course losing my job is also pretty stressful, but I can only worry about so much at a time.  I'll just hope I can have my job back when this is all over.

The Problem

I got some x-rays on Saturday for my appointment this Thursday, and I thought I'd share them.  There's a lot of bone around my hips that doesn't belong.  Kinda makes sense that it hurts.

Front
Right
Left

Developments

Mercifully, the pain wasn't quite as bad yesterday, but it's pretty bad today.  At least I got some decent sleep last night.  Sometimes I can find a comfortable position on the couch for a little while, sometimes I can't.  It seems to be random.  Right now, I'm in quite a lot of pain.

Fortunately, my friend Emily was here while I was dealing with this new and exciting development.  She came in from Philly on Thursday for a job interview at Duke, and stayed with me until today (Sunday).  So she and Gus were able to help me formulate a plan of action.  She also made me some food.

Emily

Apple dumpling and ice cream

I got an appointment for Monday to see if I can get my wheelchair adjusted to be a little less painful.

We were able to get in touch with Dr. Dahners, the orthopedic surgeon regarding my new pain, and we were able to get a new appointment for this Thursday to talk about it.  In preparation for that appointment, I had to go get some blood tests and some x-rays.  Emily was able to take me to get those, and was able to come to the appointments with me to be my advocate.

It has come to my attention that I need an advocate when I go to doctor appointments.  I have a tendency to get overwhelmed and forget to ask important questions.  I also often forget what was said in the appointment.  It's difficult to pay close attention when you've got as much emotional investment as I do so it was invaluable to have Emily with me for the appointments this weekend.

The other good news is that my friend Ashley called me today, and was able to give me a lot of good information about my options for next steps.  She also called her uncle, Dr. Campion (Ed), who is now the head of orthopedics at UNC, and offered to come with me to my appointment on Thursday.  Ed is also going to try to attend.  So that should be very helpful.  Ed told Ashley they will probably refer me to a pain management center so that might be helpful.  I sure hope so, but I really don't want to go on narcotics.  I really don't enjoy being loopy.

Ashley also mentioned that I should be able to get a personal care assistant (PCA) paid for by insurance.  It could be either someone from an agency, or it could be somebody I already know who would just need a little training and could then be paid to help me out.  Ed recommended I talk to the financial counselor at his office when I come in on Thursday to investigate how I might get that paid for.

Anyway, I just wanted to give an update.  I'm still in a lot of pain, and it's still a huge problem, but at least I have some idea what to do next.