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.

Shit

I'm in extreme pain all the time now.  My right hip won't bend like it would just a couple days ago, and it the pain is about as much as I can stand.  Sitting on the couch or even lying down doesn't give relief.  Sitting in the wheelchair is excruciating.  I have to slouch and I can only do it for a few minutes at a time.

It came on so fast, and I don't know what I'm supposed to do.  It seems to be getting worse by the hour.  I'm not going to be able to take care of myself at all in a matter of days the way it's progressing.

Thanksgiving

Last weekend was Thanksgiving, and my brother flew into town and drove me up to my sister's place in Virginia for the event.  For as long as I can remember, Thanksgiving has always been at my Aunt Koral's house in Maryland, and many of my aunts, uncles, and cousins attend.  Since I wasn't able to get up there this year, a lot of them agreed to come down somewhere I could go.

Jonathan and I drove up midday Thursday.  We had a little time before dinner, so I got to see my family for a little while before the rest of the guests arrived.

A pretty good turnout

The food was delicious, and I really enjoyed the company.  I got to spend some time with my favorite aunts and uncles who I haven't seen in a while.  I want to thank everyone for coming to see me.  It made my Thanksgiving very special.

After everybody left, I spent the night in the guest room in the basement.  That worked out quite well.  The bed was comfortable and easy to transfer to.  The bathroom worked out fine, and we really didn't run into anything unexpected.

Friday, Jonathan and I stayed through lunch.  The weather was fantastic, and we all spent much of the day on the deck.

Good times

Jonathan and I got back to my apartment Friday evening, and unpacked my stuff.  We had time to go get a delicious dinner at Tribeca Tavern, watch a bad movie and go to bed.  Jonathan's flight left early on Saturday, and I was sad he had to leave so early.  I hadn't seen him since the start of rehab, and I enjoyed spending time with him.

Unfortunately, after Jonathan left, I noticed my hips giving me more trouble than usual.  I think my HO has been progressing, and in the time from Saturday to Monday, the pain in my right hip has gotten much much worse.  It's pretty excruciating when I sit in my wheelchair.  I used to have some pain when sitting in my wheelchair, but now it's almost intolerable.  It feels like someone is stabbing a white-hot screwdriver into my hip joint and trying to pry it apart.  It used to be that I could get relief from the pain by sitting on the couch, but even that hurts now.  The pain even takes a while to subside when I lay down in bed. 

I think my hips have also gotten less flexible than they were just a couple weeks ago.  I feel like I can't sit up as straight as I used to be able to, and I have to curve my spine to compensate.  This leads to pain in my lower back.  Whenever I lift myself up, my spine audibly pops back into place.  That can't be good for it.

So I'm worried that I may be alarmingly close to the scenario I have been worried about where I can no longer take care of myself.  If I can't sit up, I can't do anything for myself.  I can't get out of bed, I can't go to the bathroom, I can't feed myself.  I don't know what to do.  If I'm going to be in this much pain, it's going to be hard to get anything done even if I can physically force myself into my wheelchair.

It figures, I just heard that IBM will allow me to continue to work part time on long-term disability, and now I'm not sure if I'll physically be able to do it.

Culinary Delights

The Ravens just won a close one against the Steelers, so I'm in a good mood, and I may as well update the blog.

I had a pretty good week this week.  The week itself was just like every other week lately, so I don't have much to say about it.  I got up, did some work, hung out with Gus and Evelyn, and generally followed my normal routine, but I also had some dinner visitors that really made the week memorable from a culinary perspective.

Monday, I went to a place called Sushi Iwa with Gus and Uyen and Evelyn.  I love sushi, so it was a good experience, and it was a little different than Thai's Noodle where I usually go.  Variety is always good, and it helped me confirm how good the sushi is at Thai's Noodle.

Tuesday, my old roommate, Julie, took me to Outback.  That was awesome because I hadn't had a steak since my accident, and I'd been craving it.  There are better steaks, but you really can't go wrong at Outback.  A memorable meal.

Thursday, my friend Katie, who you may remember as the occupational therapy student from rehab, came by and we went to Bonefish Grill.  Gus had been talking about rare ahi tuna steak on Monday, so I had been craving that.  Nobody does seafood better than Bonefish, and I was thrilled with the meal I got.  I think it was the most memorable meal I've had since I left the hospital.

Mmmmm...

Friday, my friend Jimmy came by for the evening and brought Five Guys burgers and fries.  Those are some of my favorite foods, and I was sad when they were gone.

So I had some good company this week, and I got out of the apartment quite a bit.  And I ate REALLY well.  On the whole, it was a good week.

Unfortunately, I am concerned that my HO is getting worse.  I think my right hip is losing the already minimal flexibility it has had.  It now hurts a lot more than it used to just to sit in my wheelchair, and that's new.  I'm not sure what I can do about it though, so I'll probably just continue to ignore it until I physically can't sit up anymore.

This week, my brother will fly in on Wednesday, and drive me up to my sister's place in Virginia on Thursday.  That should be an interesting experience.  Wish me luck.

Work

It's Saturday again, and I'm going to finally update my blog while I watch a meaningless college football game.

My mom wants me to go up to my sister's house in Virginia for Thanksgiving, but I wanted to make sure I'll be able to get in to the house and do all the things I need to do.  So Gus and Evelyn and I took a road trip up there on Thursday to examine the facilities.

Overall, it's pretty good.  I can get in the basement easily, and with my new wheels I fit through all the important doors.  I can get in the downstairs bathroom, and I can get in the downstairs bedroom.  The downstairs couch is pretty low so if I transfer on, I can't get back off.  I can't reach the sink because I can't roll up close enough, but I expected that.  I took my commode that goes over the toilet.  To get it to fit, we had to lower it significantly.  That makes the transfer pretty sketchy, but I guess it will work.

To get upstairs, I can go out the downstairs door and roll around to the front of the house on the street.  Unfortunately, the driveway in front of the house is incredibly steep so I can't roll up by myself.  And once I get to the top, there's still a big step up to get in the house.  It would be nice if there was a ramp, but Gus proved he can lift me up one step if we're careful.  I find that technique pretty scary, but I guess I don't have a choice.  The upstairs couch is also too low.  So Thanksgiving should be interesting.

The other thing that happened this week is I found out that IBM may not let me continue working part-time when I go on long-term disability (LTD) in December.  I've been on short-term disability (STD) since my injury in April, and I started working 3 hours a day back in August.  Doing some work gives some structure to my day, and gives me a little bit of social interaction every day, and I didn't realize how important it is to me until they told me they might take it away.

I'm still waiting to hear whether IBM will let me continue to put in some hours while on LTD.  If they won't, then I'm going to go crazy while I wait for my HO surgery.  I'm still hoping they might be able to do that in January, but there's no guarantee.  It might be May or even later.  There's no way to know yet.  I can't imagine doing nothing while I wait.  I will literally go crazy.  So I'm holding my breath.  Hopefully I'll find out this week.

Fun

Lately, I've been lucky enough to have some fun, and I guess I should tell you about it.

One of the bad things about being stuck in a wheelchair is that I can't get into most of my friends' houses.  It turns out that most houses require you to navigate at least one or two stairs to get in.  That's not really an option for me.  Fortunately, last weekend, Gus built a ramp over his garage stairs so I can get in.

It's kinda steep

The ramp is a little on the steep side, so I need a big push to get up, and coming down is pretty exciting, but at least I can get in.  So last Monday, I went over and had pizza and watched Monday Night Football.  It was pretty fun to get a change of scenery.  Also, Rosati's pizza is pretty good.

Watching football on a different couch

Last week, I went looking for somebody who wanted to see Argo in the theater with me, and Andy agreed, so we did that Saturday.  That was fun, but also on Saturday, I got a call from my brother-in-law.  It turns out this weekend was the Martinsville NASCAR race.  I had lost track of the date, but for the last 12 years, twice a year, whenever NASCAR races at Martinsville, I have gone up to Hillsville, VA to meet up with a group of friends from all over the east coast and waste several days drinking and wasting time.  Anyway, the Martinsville group decided that they wanted to waste their Saturday by driving 3.5 hours one-way to hang out with me for a few hours, and then drive 3.5 hours back.  So that's what they did.

Mark T., Matt, Curt, and Chris

Jon and Rocco

We spent some time hanging out in my apartment, and then we went to the wing place near my apartment.  I had a great time, and it made me wish I was going with them back to the cabin, but I had a great time hanging out with those guys.  It was easily the most fun I had this week.

So I've had a pretty fun week, and I thought I'd share.  Hopefully this week will be good too.

Mark B. and Mark T.

Surgery News

Once again it's Sunday night, and I find myself waiting for the late game to start.  Bengals at Steelers.  Probably won't be a great game. In the meantime, I'll tell you about my appointment with the surgeon while I wait.

On Thursday, I finally met with Dr. Dahners about my HO surgery.  I was expecting him to tell me to come back in 3 more months for another CT scan, but he basically just asked me when I wanted to have the surgery.  He said I could do it as early as November, but after thinking about it, I told him January.  I wanted to wait until after the holidays.

Then he sent me for some blood tests.  I got a call on Friday telling me the chemical that indicates conditions are right for bone creation were too high, and that January is the earliest they could try the surgery, but they'll have to test me again and see if the levels are low enough then.  So maybe I'm having the surgery in January and maybe I'm not.  We'll see.

I learned some stuff about the surgery.  Dr. Dahners said he looked at the CT scan and I've got a lot of extra bone in my hips.  The bone in front of the hips is blocking my movement.  He said they will have to do one hip at a time in two separate surgeries.  He said I'll lose a lot of blood, and they don't want to give me a blood transfusion because it increases the risk.

He said they won't be able to remove all of the bone, but they can get a lot of it and I should get some of my range of movement back.  I don't know how much.  We'll see.

I will probably be in the hospital about 3 days after each surgery, and the time between the surgeries will depend largely on how well I recover.  Best case would be one month, worst case would be "several months" which I interpret as 3 months.  Again, we'll see.

I'm hoping they'll put me back in rehab for a while after the surgeries, but I expect I'll be pretty injured afterward, so I'll probably need a lot of help until I get better.  I'm hoping I can still count on my friends during that time, and I think my family will probably make time to come help me.  I think it's likely to be unpleasant.

Either way, I hope we can get this party started sooner rather than later.  I'm ready to get my flexibility back.

Escapism

My life here is mostly boring and repetitive, and when it isn't, it's extremely stressful.  I look forward to every break I get from it.  Recently, my favorite escape, and the thing I look forward to the most every week is football.  It's something I can do alone, and I can happily sit on the couch all day and watch.  The Hokies aren't very good this year, but I don't care.  There are other good teams to watch, and I'd rather watch the Hokies lose than do just about anything else.

For the first time, I've also really developed a love for the NFL.  I especially enjoy watching the Ravens.  Not just because I'm from Baltimore.  I really enjoy the way they play the game when they're playing well.  The Chicago Bears are also fun to watch this year.  I love watching good defense.

Apart from football, I've been starting to go a little stir crazy lately.  I've hardly left my apartment since I got here in June, and it's starting to wear on me.  The fact is I'm scared to go very far from home.  Here in my apartment, I have access to everything I need, and I know I can handle just about any situation that might arise.  When I leave home, I have no control over the environment, and if something goes wrong, I have few options.

That said, I don't want to be a shut-in so I've decided to try to accept more invitations and get out more.  I mentioned in a previous post that I went with Mike and Sue to Trivia Night at the bar.  We finished 4th.  I'd like to do more short trips like that.

Gus and Uyen invited me to go to the state fair with them this week.  Initially, I told them I didn't think I'd enjoy that, but later I decided I should try it.  I'm so glad I did.  It worked out that my sister was in town that day with my nephew to pick up some of my furniture, and the weather was perfect.  I had a great great time.  Maybe the best time I've had since I've been out of the hospital.

Funnel cake is the only real reason to go to the fair

The kids had fun, and I got to eat a whole ton of fair food.  It felt good to be out in public, but it was also very comforting to have the right people with me.  It was also nice to see my nephew.

Out in public

This was my most ambitious excursion yet, and it was a huge success.  Here are the rest of the pictures.

My mom wants me to travel up to Danville, VA to my sister's house for Thanksgiving.  I have some serious concerns about that.  I'm worried that I'm going to end up spending a lot of time in the wheelchair which will be painful, and that it will be difficult to do the program when I'm up there.  I already know their bathroom door is barely wide enough for my wheelchair.  Then, after the program, I need to get on a bed to put my pants on.  I don't know if the bed they have will be easy to transfer to and from.  I think Gus is going to drive me up for a short visit so we can investigate the facility before Thanksgiving, but it looks like that's where I'll be for Turkey Day.  I don't know what I'm worried about.  What's the worst that can happen, right?  Of course the answer, as always, is that I could poop my pants in front of everyone I know.  That's pretty much always the answer to that question.  We'll see what happens.

Catching Up

The longer I go without writing, the more pressure I feel to write a long post, so it becomes a daunting prospect to write everything I think I should.  But I have to do it sometime so here we go.

I'm starting to get into a bit of a routine.  Pretty much every day, I know at just about every given moment what I'm supposed to be doing.  I suppose that's a good thing, and it cuts down my stress level, but I feel like my life is on pause.  I'm just waiting for something to change.

People that know me well know that I have a poor memory, and I'm already starting to forget what life was like before the injury.  I haven't had any dreams about walking lately.  I guess that's a good thing.

Work is going about as well as I could.  I'm still working 3 hours a day, and I think it's getting easier.  I'm still glad I'm doing it.  It makes me feel like I'm accomplishing something.  It's about the only time I feel useful.

Gus continues to make himself indispensable.  Last weekend, we took my van over to his house to do a little work on it.  I really appreciate that, but it's frustrating to watch him do work that I used to be perfectly capable of doing myself.  Makes me feel useless.

This morning, Gus had a garage sale for some of my stuff that I don't need anymore.  I didn't go this morning, but I was over there last night putting prices on stuff.  I'm curious to hear how it went.

The HO continues to be a huge problem, but I'm getting accustomed to it.  I've kindof accepted that there are things I can do and things I can't do.  I hope the surgery fixes me eventually, but I've got a system to cope with the things I can't do.  Most of the time I have to depend on Gus for that, but at least I've got Gus.

Speaking of that, I meet with the orthopedic surgeon on the 18th so maybe I'll have some news around then.  I suspect that they're just going to tell me to wait a few more months and we'll talk again then.  The longer I'm out of the hospital, the less I'm looking forward to a big surgery.  I don't really enjoy pain all that much.

I've been trying to get out of the house a little more, and I've had a few opportunities since the last time I wrote.  Mike and Sue took me to trivia night at a wing place, and I got to go to a couple restaurants outside my neighborhood.  I've also been to Gus's house a couple times although I can still only get into the garage and the basement.  It's a nice change of pace though.

I guess that's about all I want to write right now.  This post was all over the place, but hopefully it will hold you for a little while.  Now I'm going back to watching Virginia Tech try to lose a football game to Duke.

Achievement

I had a good day today, and I wanted to share.  It's the first really good day I've had in a while.

This morning, I went outside for exercise with Gus and Evelyn.  It's the first time I have gone outside with the express purpose of pushing my wheelchair just for the exercise.  I pushed myself over to the apartment office to drop off my release renewal, then I pushed myself around the block here at the apartment, then I pushed over to the mailboxes to get my mail.  By the time I got back, I was exhausted, but it felt good to raise the heart rate and it worked my arms like nothing I've done since leaving the hospital.

Then it was shower time.  Every time I take a shower, I try to lift my feet over the tub wall myself before giving up and asking for help.  Sometimes I get one, but usually I fail.  Today, for the first time, I succeeded in lifting both feet both in and out of the tub unassisted.  I know it doesn't sound like much, but it meant a lot to me.  I don't know if I can do it again, and it doesn't really mean anything because I still can't remove my socks unassisted so I still can't shower alone, but it felt like progress, and I haven't felt that in a long time.  This accomplishment alone would have made it a good day.

Finally, Cullen and Caitlin came over for dinner and we went for sushi.  I had been looking forward to that for days.  I love sushi, and I love hanging out with Cullen and Caitlin.  After dinner we went to Dairy Queen.

At the Queen

So it's been a good day, and I just felt like sharing.  Now it's time to watch some tv and go to bed.

Sold!

My house closed on Friday without incident.  It represents the closing of a big chapter of my life.  I'm pretty happy to not be paying the mortgage anymore, but it's still kind of sad.  I thought I'd be in that house a long time, and I put a lot of work into it.  I miss my neighbors, and I miss my garage, but I don't miss mowing the lawn.

Goodbye

Brittany says the new owner has moved in.  I hope she gets along with Titus and Brittany.  I'd hate to leave my favorite neighbors with a bad replacement neighbor.

I really can't thank my friends enough for all the help they gave me prepping the house for sale.  I certainly didn't expect to sell it when I left for the track in April so they had a ton of work to do.  They did it remarkably quickly, and the speed with which it sold is testament to how good a job they did.

Looking Forward

If I don't have anything to look forward to, it makes it really hard to get out of bed in the morning.  Right now, the only thing I actually look forward to is sleep, and the only reason to get up is so I don't pee my pants.

For a while, I had dinner guests every night, but that has slowed to a trickle as I knew it would.  Now, if I have two guests a week, I'm doing pretty well.  For a while, I looked forward to watching TV, but now I have watched about all the TV I care to see.  Now it mostly feels tedious and repetitive.  When I'm watching TV, I keep thinking about how I could be sleeping.  And I keep seeing people on TV doing the things I wish I was doing.  I want to go camping or running.  I want to ride a bicycle.  Of course I can't look forward to any of those things.  Right now, if I can take my trash out to the dumpster, I feel like I have accomplished something.

At some point, I suppose I'm looking forward to a painful and invasive surgery, but there is so much uncertainty about that that it's impossible to look forward to it too much.  I'm not even sure it'll solve any of my problems.  And it might create new ones.

Having nothing to look forward to is making it really hard to do the things I'm supposed to be doing.  Notably my exercise routine.  I don't see any immediate benefit, so what's the point?  In my heart, I know that's a bad mentality, but I just don't care.

So I've decided I need some goals.  If I have something practical I can look forward to, maybe that will give me a reason to get up in the morning.  The goal I keep focusing on is being able to drive and the freedom that comes with it.  I hate asking people whenever I need to go somewhere.  I just want to be able to go where I want.  Right now I'm a shut-in.  It's depressing.  It would do a lot for my outlook if I could just go where I want.

Of course even when I can drive, I still can't go a lot of the places I want because they aren't wheelchair accessible.  I can only get into one friend's house, and that's way back up where I used to live.  I don't see myself getting up there very often.

It occurred to me today that my sleepiness may be caused by the drug I'm taking to try to control my spasms.  The spasms seem a little better, but at what cost?  I may have to decide what's more important, but I can say that the spasms are pretty bad.  The sleepiness makes it really hard to get anything done though.  Makes it hard to write the blog.

In other news, my house should close tomorrow.  That will be a load off my mind, and I can't thank Gus enough for the tremendous amount of help he's given me with that.  He's got all my stuff stored at his house right now, and at some point, I expect to have a yard sale to get rid of a lot of it.  Who wants my awesome coffee table?  It makes me very sad to part with everything I've spent the last 10 years collecting, but I just can't keep it.

Goings On

It's only Tuesday and I'm already exhausted.  It's been a long week.  I'm still taking one day at a time, but the last few have been pretty good.  The next few will be a challenge.

Last Friday, some of my friends threw a party in my apartment.  Gus made his famous ribs and baked beans, and Caitlin brought 7-layer dip, and Kelly made ice cream-cookie sandwiches.  I bought a bunch of beer, and a bunch of people came, and we had a great time.  It was nice to hang out with a bunch of my friends at once.

Jessica, Cullen, me, Titus, Uyen, Gus, and Ben

Brittany was there too

Brian checking out Ben's new phone

Gus showing off his ribs

Buddha Bear was there too

Later, Buddha did some body shots

I was happy my neighbors didn't call the police.

Saturday morning, Gus's family left for Kansas, but my friend Emily used some of her vacation to fly down from Philly and stay with me.  Emily is my cousin's sister-in-law, and happens to be a neurophysiologist who works on a surgical team that does spinal surgeries like the spinal fusion I had.

Emily and I have always gotten along well at family functions because we have similar interests, including the fact that she rides an SV650 like the one I used to race.  Her family owns a dairy farm up in the North Country near where my family's farm is.

Emily

Emily and I had a great time hanging out and watching movies.  She also helped me out with a bunch of things around the house.  Unfortunately, she had to leave this morning (Tuesday), and I'm going to be mostly by myself the rest of the week.  We'll see how that goes.  I know I have people I can call if I need help, but except for dinner Thursday night, nobody actually scheduled to come over.

While Emily was here, we spent some time out on the balcony, and it is definitely starting to feel like Summer is over.  It's not cold outside yet, but there were a couple times when it definitely wasn't hot either.  I'm worried about winter.  It's hard enough to put on gym shorts and a t-shirt by myself.  Emily took me to Target to shop for some long pants, but I haven't tried to put them on yet.  I'm worried about putting them on and getting them off by myself.  If I can't, it's going to be a loooong winter.

Otherwise, things are going okay here.  I'm not sure, but I don't think my HO is getting any worse, and the same for my spasms.  They're still not good though.  I'm starting to think I'm likely to end up with a baclofen pump at some point, but I'll worry about that later.  For now, I'm just going to keep taking things one day at a time and seeing how things go.

Passion

Today I got an email from my buddy, Chris, about his latest motorcycle race.  Here's a video he sent.

WERA Talladega GPR Formula 2 - August 2012

You don't have to watch it.  If you're not a motorcycle racing fan, you might think it's boring.  I find it riveting.  But then again, I spent the last few years devoting myself to becoming as good at this as I could.  Motorcycle racing is the first and only thing I have ever felt truly passionate about.  I could happily live, eat, and breathe motorcycle racing, and talk about it until everyone around me was bored to tears.

It immersed me completely.  Working on the bike, learning to tune it to make it handle better, improving my skills in riding it, analyzing my past performance.  I happily spent all my free time on it.  Now I can't do it anymore, and all the knowledge and skills I acquired seem like a waste.

One thing I've been thinking a lot about lately is whether I'll ever have another passion.  Something that makes me want to stay up late at night and get up early.  Something that makes my pulse quicken just thinking about it.

It's hard to imagine right now what it might be, but I hope I find one eventually.  Life is so much better when you're passionate about something.

Little Help?

Since I got out of the hospital, my friend, Gus, has been completely indispensable to me.  He helps me with everything on a daily basis.  He has helped me sell my house, and a motorcycle.  Currently, he's helping me sell a car, and he comes over for lunch most days and helps with whatever I need.  He keeps me from panicking about the things I can't do for myself, and I literally don't know what I would do without him.

Unfortunately, I'm going to find out what I would do without him the week of September 8th to the 15th.  He's going on vacation to Kansas to hang out with his family.  That's going to leave me all alone, so if you were thinking about coming to visit, that would be a good time.  I need help with stupid stuff like checking my mail and changing my sheets.  And putting my socks on.  It's stupid, but important, and I can't do it myself.

Also from Kansas

And company.  I could use some company.  So think about it.  If you've been thinking about visiting, that week would be a good time.  I'd really appreciate it.

The Nicest Guy in the World

I want to tell everybody about this guy I know.  His name is Syed, and he's the Physical Therapist that came to my house when I first got out of the hospital.

The nicest guy in the world with Buddha Bear

Syed is one of the most interesting people I've ever met.  He's from Malaysia, and has a passion for cars.  Especially Mercedes.  He's almost 50 years old and doesn't look a day over 35.  He enjoys jazz music, and wishes he could live in a hut on the beach somewhere.

My insurance company paid for Syed to come help me work out 8 or 10 times after I was released, and he did a great job.  But then, they stopped paying him.  And Syed kept coming.  Now he only has time to come on the weekend, but he does it on his own time.  He comes most Sundays and helps for half an hour.  I don't pay him at all.

He also calls me a couple times a week to remind me to work out.  That's hugely helpful for me.  I respond well to peer pressure, and if it wasn't for that pressure, I probably wouldn't work out as much as I do.  And I really do think I've been getting stronger in the arms and shoulders.  I also think I may be getting a tiny bit of abdominal function back, but that's another story.

Anyway, this post is about Syed.  If you're worried that there aren't good people left in this world, think again.

Work In Progress

This week has been a blur.  I started working 3 hours a day on Tuesday, and it has been... interesting.

The first day was extremely hard for me physically.  I wasn't feeling very flexible that day, and it just hurt physically to sit in the chair that long.  The second day was better.  I felt better, and it didn't hurt so much to sit for that long.  The third day was moderately painful, but I worked more hours so I wouldn't have to work so much on Friday.

Overall, I'll call it a success, but it's a tough call.  The first assignment they've given me is to add a feature to a program I wrote a long time ago.  Programming requires you to have have a complicated procedure straight in your brain in order to make progress.  Every time I take a break, it takes me an hour or so to get started again.  When you only work 3 hours a day with a break in the middle, it makes it tough to get anything done.

So I've found that it's hard to make it to 3 hours because of physical pain, but it's hard to stop at 3 hours because I only just started making progress.  It'll be interesting to see how that plays out.

I can already say that I hate working on my laptop from home.  At work, I have a fast desktop with 2 monitors so I can see a lot at once.  Working on the laptop is like working through a periscope.  I feel like I can barely see anything, and everything is on a time delay because the laptop is so slow.  I don't know what I can do about it though.

It's also challenging to try to fit my work into my schedule.  I feel like I don't do that much in a given day, but because everything takes so long, I barely have time for everything I need to do.  I have to get up, eat breakfast, get cleaned up, rest on the couch, work, eat lunch, entertain a lunch guest, possibly shower or take a trip to the store, rest, work some more, do the program, hopefully entertain a dinner guest, sleep.  I also have to consider doing laundry, dishes, or some cleaning in there.  All of it takes time, and there's only so much in the day.  I'm still trying to figure it out.

It does feel good to be back helping out at work though.  I just hope I can be productive and actually do some good.

Normal

On Saturday night, Mike and Sue took me out in my van to a Carolina Railhawks soccer game.  They had told me in the hospital that they wanted to take me, and now that I've got my van, it's physically possible.  When they invited me, I was concerned about having the stamina to sit through the whole game, but I decided I wanted to give it a try.

Sue and I watching grown men kick a ball around

The game worked out marvelously, and I had a great time.  I got to have a beer and some peanuts, and then a couple hot dogs.  The van worked perfectly, as it has since I got it, so the soccer game was a complete success.

After soccer, we went back to my place and sat on the deck and drank bourbon.  As much as I enjoyed the soccer, I REALLY enjoyed sitting around drinking.

Mmm... bourbon...

In the last couple weeks, I have had three opportunities to sit on the deck with somebody and just drink and talk, and I have realized something.  That is the only activity besides sleeping where I feel completely normal.

My brain didn't get injured in the crash, and I still feel like the same person I was before the accident except I'm trapped in a body that doesn't work.  Every waking minute of my life now is occupied with thinking about how to solve the suddenly complicated problems of everyday life.  The only time I'm not at all thinking about my broken body is when I'm asleep or when I'm having a few drinks and talking with my friends.  It's the only time I really feel normal and completely forget about my problems for a little while.

So I want to thank those of you who have spent time doing that with me.  It means more to me than you may realize.

Offer Accepted

The most significant thing that happened last week was that, I accepted an offer on my house.  The house went on the market around August 7, and I had initially listed the house for $169,000.  Nancy, my real estate agent, had done some homework on what houses in my neighborhood have been selling for, and once you adjust for the fact that my house is smaller than any of those, it seemed like $158,000 was about what we should expect.  It was also true that all the houses we compared it against had set an initial asking price way too high, and then let the house sit on the market for 150+ days, slowly reducing their price.  I didn't want to do that, so I tried to set my asking price low for a quick sale.  I also made sure I undercut the asking price of the only other house of a similar size that is currently for sale in the neighborhood.

I got an offer the day after I listed it for $155,000 minus $3,000 in closing costs.  That felt like an insult, but I countered with $162,000 minus $3,000.  They rejected that, so I moved on.  On Wednesday the 15th, we got another offer.  This one was for $165,000 minus $3,000.  I didn't have to take much time to think about it.  I accepted, and now the inspections/negotiations can begin.

As long as they don't find too much wrong with it, I should be able to close in the middle of September.  My friends have done a great job fixing the place up, so hopefully there isn't much to find.  In any event, I am very pleased that it only spent a week on the market, and hopefully this particular chore will soon be over.

Employment

I spent a lot of time last week on the phone with the disability people and with my boss, and I have decided to start working part time from home.  I don't really want to, and I'm not at all sure that I'm ready, but it will extend my disability payments, and it will give me a reason to get up in the morning.  I should start working sometime this week.  I'll start out working 3 hours a day.  I hope I can do it.

Sorry

Sorry I haven't posted sooner.  I've mentioned to a couple people in the last few days that I really don't like writing about what I did today unless what I did is exceptional.  Listing off my daily routine isn't very interesting to me, and I don't feel like it will be interesting to any of my readers.  Except my mom.

It is also a fact that I have been spending a lot of time lately on the couch.  I like sitting on the couch because it doesn't hurt my butt like sitting in the wheelchair does.  On the couch, I can just relax, be comfortable, and sleep if I feel like it.  I love sitting on the couch.  I'd like to get a new couch.  I learned in rehab that a leather one is nice because it's easy to slide around on.  It needs to be a firm one though.  It can't be one of these soft overstuffed ones.  I don't know if I'd be able to get back off one of those, and sliding around is tough when you sink in.

I don't know where I get a couch like I want.  I looked on craigslist, but all the ones I saw were overstuffed.  I'm not sure how I feel about a used couch anyway.  Unfortunately, going to furniture stores is going to be a pretty big chore for me at this point.

Anyway, once I get on the couch for the evening, it's a lot of work to get back in the wheelchair, so I've been lazy, and haven't been posting to the blog, even when I've got something to write about.  But I do have some stuff to write about from this week just past, so I'll try to get it done this week.  Stay tuned.

Kids

Yesterday, my sister made the trek down from Danville to bring her kids down to see me for the first time since the accident.  I had been wanting to see them, and I figured I've had plenty of other kids in my apartment, so why not them?

They've both gotten a lot bigger since I saw them last, and Kelly is talking in almost complete sentences now.  He's also pronouncing the letter J so he says "Uncle Jace" now instead of "Uncle Dace".  I miss Uncle Dace.

He did specifically ask if I could do upside-down (which he no longer pronounces uppayidesdown), which you may recall was something I was dreading.  I had to bite my lip, but I got through it.  I'm still worried he's going to think I'm boring, but I can only do what I can do.

Georgia is also getting big.  She seems huge, but Jessica says she's only in the 75th percentile height-wise.  She's certainly got more personality than the last time I saw her, and I don't think she screamed once at my place so that's a huge improvement.

Gus and Uyen and Evelyn came over too, and we all went to the playground in my neighborhood.  That was pretty fun.  I learned that pushing a wheelchair in wet mulch is extremely hard work.  That's why I got Kelly to help push me on the way home.

Maybe I can hire him on full-time

Trying to get a group picture with small children is like herding cats

Here's the rest of the pictures from our visit.

I'm very glad they came to visit, but it was exhausting.  Small children always are, even if I'm related.  Tonight, Brian and Kelly made me dinner, and brought over Brayden and Ashton.   Dinner was delicious, but they kids were exhausting.  I need a nap to recover.  I honestly don't know how anyone survives parenting small children 24 hours a day.

Kids love Buddha Bear

Since moving into this apartment, I have spent more time with kids than I have since I was one myself.  It's a bit of an adjustment, but I'd rather have people bring over their kids than not come at all.  It's just something I'll have to get used to I guess.

I Had a Dream

When I was in rehab, I made a decision that I wasn't going to think about walking.  I was going to accept my situation, and concentrate on being the best paraplegic I could be.  I thought that hoping to walk again would be bad for me.  A lot has happened since then, but my strategy remains the same.

Unfortunately, there's a part of my brain that isn't on board with the plan.  The last two nights, I have had very vivid dreams where I could miraculously walk again.  It felt completely real, and the relief at getting my legs back was intoxicating.  When I woke up, reality set back in.  It was incredibly depressing.

I thought I had skipped over the mourning period for what I've lost, but maybe it's still coming.  I hope not, and I hope I don't have to dream about walking for the rest of my life.  I'm not sure I can take it.

When I was in rehab, somebody told me that when you start having dreams where you're in the wheelchair, that's when you've really arrived as a paraplegic.  I'm not really looking forward to those dreams either.  Maybe I can just not dream for the rest of my life...

House For Sale

Thanks to an incredible amount of work by my friends and family, my house finally went on the market this week.  I thought I'd share the pictures I have.

You can also check out the zillow listing.

Lemme know if you want to buy it.  :)

I miss living here

Back to work?

Today I had a call with my manager where we discussed the idea of trying to do a little bit of work.  I would work from home, and I think I'd start out at around 10 hours per week.  I have been told that I can work part time and maintain disability payments based on how many hours I don't work, so I need to figure out how that works in detail this week.

My I still don't know where I'm going to find time in my schedule to do the actual work, but I'm hopeful that will work itself out.  My team is understaffed so they can use my help, and I'd like to help out if I can.  I just hope I can figure out how to work it into my schedule.

Speaking of my schedule, I've been lucky to be very busy with visitors the last couple days.  Yesterday was Sunday, and Cullen and Gus stopped by for lunch after going to my house to finish up a few tasks before it goes on the market.  We had a nice, if brief visit.

A little later that afternoon, Justin showed up.

My buds

We had a really nice visit, and Justin helped me out with a few things I'd been wanting to get done.  Then we had pizza.  I love pizza.

Justin stayed until pretty late and watched some Olympics with me.  Later in the evening, Brian showed up and helped watch Olympics too.  It was a good evening.

Justin helping me watch women's beach volleyball

Today was another busy one.  Bert stopped by for lunch on his way up from Laurinburg to see somebody at IBM today.  He and Gus and Evelyn shared leftover pizza with me.

Mmm... pizza...

And tonight, David and Kristen brought me delicious meatloaf and brownies and kept me company for several hours.  I had a great time, and I even had my first bourbon and coke since the accident.  Mmm... bourbon...

I'm expecting every day this week to be just as busy as today, so it should be a very good week if so.  I'm looking forward to it.