Relaxing

It was a pretty relaxing day.  I spent quite a bit of it on my couch.  That's much easier to do since Gus built some 1.5" risers for it.  Before that, it was pretty tough to transfer back to the wheelchair.  Now it's pretty easy.

Uyen told me yesterday Evelyn insisted this video be sent to me.  I told Uyen that Evelyn is developing a fan base on my blog.

Gus is still out of town, but Uyen and Evelyn came over for lunch today.  It was nice to have the company.  I've gotten so used to having guests that it can get pretty lonely over here, especially on days when I don't have anything to do.  It seems like I spend more time alone on the weekends.  I need to start inviting weekend guests earlier in the week.

After lunch, we went down to look at the party van, and Evelyn wanted to take a turn at the wheel.

Give her a license

The only other interesting thing I did today was to finally turn on the Olympics.  It's completely addictive.  I watched swimming, women's gymnastics, men's volleyball, and some water polo.  I really enjoy watching it, but it does tend to be a reminder of all the stuff I can't do anymore.  It's not like I was ever going to do any of this stuff, but it's still a little depressing.

I felt like I wasted the day, but I really didn't have much to do, and it feels good to waste time every now and then.

If This Van's a-Rockin', It's Probably Broken

Today was a big day.  Brian showed up around 8:30 with a stack of cash to finance my van shopping adventure.  The van was advertised for $5500 so that's what he brought.  He got it out of his own account and I wrote him a check when he got here.  He better hope I'm good for it.

It's all about the Benjamins

At 10:00, Julie showed up with her fiance, David, and his son, Justin, to take me all the way out to Asheboro to see the van.  I was surprised I was able to find somebody to do that on such short notice, and I was REALLY surprised that I was able to find enough people to actually buy the van and drive it home.  I only saw the ad at 7:30 last night, and it turns out Gus, Cullen, Caitlin, Mike, and Sue are all out of town this weekend.  Titus and Brittany were busy.  Ben was busy.  Brian and Kelly have too many kids.  Jessica can't drive.  Julie was really my last hope.

So we hit the road from my apartment around 10:15 and arrived in Asheboro around 11:30.  We met up with my contact, Barry, who led us to the van.  He took us to the home of an 80-year-old lawyer and Episcopal minister named John, whose wife just passed away.  John initially showed us the main features, but seemed irritated to answer any questions about the van.

The van is a Dodge, so I feared the worst, and it's true that the paint is peeling pretty badly in spots, but Dodges from the 90's do that so it wasn't unexpected. The driver side power window is broken, and the right front tire is a little bald.  It may have an alignment problem like my parents' old Caravan, but I probably won't put enough miles on it to notice.

John let David take me out for a test drive, and I had to rely on David's analysis, but we couldn't find anything wrong mechanically.  The transmission seemed to work fine, the brakes felt great, the suspension felt fine, and the AC worked.  There wasn't any pulsation, and it tracked straight when you let go of the wheel.  Under the hood, there was a little oil on the valve cover, but it's a Dodge.  I'd be suspicious if there WASN'T any oil under the hood.

I'm pretty sure I can get Titus to fix the window, and get me a pair of front tires for cheap, so I offered John $5000.  He said $5200 and we shook hands.  That's about half what I was expecting to pay for a wheelchair van.  It's a little older than I'd prefer, but it only has 116k miles on the ticker, and it looks like it's been very well maintained.

Once we agreed on a price, John was really very friendly.  We sat inside with him for a while doing the paperwork, and then left to go get lunch in town.  We weren't able to park in town because of a classic car show that was going on, but while we were there, John chased us down in his Honda to give us the spare key fob he had.  Nice guy.

I was giddy on the way home about my purchase.  I think it's going to be perfect for me, especially once I get the nit-pick items fixed.  Julie drove me home, and I had her check all the bells and whistles.  Everything seems to work great.  The ramp also seems to work fine, and the tie-downs are adequate.  I may need to find a better way to attach them to my chair though.  I probably also ought to come up with a seatbelt solution.  Right now there isn't one.

A new van owner

When I got home, I posed for a picture with my new ride.

I need to get some sweet rims

This van should mean more freedom.  I'll be able to leave the apartment complex much more easily, and anybody who wants to take me to a doctor's appointment can now do so regardless of what sort of vehicle they own.  That opens up a lot of opportunities for me.  All that's left to do now is to register it.  Anybody want to go to the DMV for me?  :-)

Doctor Visit

Today, I had an appointment with my doctor at UNC.  Gus is out of town, and Brittany volunteered to shuttle me to and from the hospital.

I can actually get in her car

I always enjoy hanging out with Brittany, and I was very grateful to have a ride.  I don't enjoy bumming rides from my friends, but you gotta do what you gotta do.

The appointment was uneventful.  I didn't learn much except that there's another doctor I'll need to see soon.  Hooray.

After the appointment, we went up to rehab on the 7th floor to say hi to all my friends there.  It was nice to see everybody, and I even wore my custom rehab t-shirt for the occasion.  I felt bad making Brittany wait for that, but she was a good sport.

I got the form for my handicapped parking hangers at the doctor, and Brittany took me by the DMV so I could pick them up.  I've been wanting to get those for a while.  I'm looking forward to better parking spots.

It felt good to get out of the house today even though it was 100 degrees out.

The parking garage in my building

Obstructing traffic

When we got home from the doctor, we had lunch, and Brittany vacuumed my apartment.  I helped a little.

I missed a spot

Tonight, I found a wheelchair van on Craigslist way out in Asheboro that I want to go look at.  It's older, but it's in my price range and much cheaper than any other I've seen so I really want to go look at it.  Unfortunately, most of my friends are out of town this weekend so I had to make a lot of phone calls, but I think I found somebody go get me some cash from the bank and somebody else to take me all the way out there tomorrow along with somebody else to drive the van back if I buy it.  It took hours to set that up, but I sure am glad I've got good friends.

Hopefully by this time tomorrow, I'll be the proud owner of a used, but reliable (I hope) 1997 Dodge Caravan with ramp.  Then the fun will really begin.

I hope it's worth the effort

Sushi Night

Titus and Brittany came down for sushi last night.  I've been looking forward to sushi night all week, so I was excited that it was time.  And then I ate too much.  Again.  I really have to stop doing that, but it's so hard when the food is that good.

Sushi feast with friends

The physical therapist that visits me at my home, Syed, said he would try to visit me on his own time to help me get more workouts in.  He also said he would call me to remind me to do my workout.  I thought that was incredibly nice of him whether he actually comes here or not.  He called this morning, so I'm off to do my arm/shoulder workout.

Pizza

Today was a pretty good day.  My physical therapist, Syed, came over and put me through my arm/shoulder workout.  I had a delicious lunch of leftovers with Gus and Evelyn.  Later I got a shower, and Gus helped me put clean sheets on the bed.

I did a lot of moving today, and that seemed to be good for my flexibility and my pain.  I should probably try to be more active every day.  Unfortunately, it doesn't mesh well with my laziness.

For dinner, my former roommate, Julie, came over and brought me pizza.

I love good pizza.  I especially like leftover pizza.  It's so easy to fix and eat.  Therefore, when I ordered, I ordered the largest pizza Rosati's makes: the 20-incher.

Julie and the biggest pizza you can get around here

That thing was delicious.  I'd never had Rosati's before, but it did not disappoint.  They put their pepperoni under the cheese like one of my other favorite pizzas, Rudino's.  They even cut their round pie in square slices.  Don't ask me how the physics works, but this makes it better somehow.

I think Julie and I were able to consume less than 1/3 of the pizza so I have a TON of leftovers.  Just the way I like it.  There are some more good lunches in my future.

Five layers of leftovers

Reubens

Tonight, the Carey's came over for dinner and made Reubens.  I've had plenty of Reubens before, but Gus insists on cooking his own corned beef, and it makes all the difference.  I've never had a Reuben before where I felt like the rest of the sandwich was detracting from the flavor of the meat.  Nibbled by itself, the meat tonight was the absolutely delicious and melt-in-your-mouth tender.

They also brought a dessert their neighbor made with some sort of european custard and orange slices in a pie crust.  It was fantastic.  And as always, it was nice to have company for dinner.

Not a good picture of me.  Might be my favorite picture of Evelyn.

Apartment Tour

I know a lot of you have never been to my apartment, so I thought it would be a good time for a photo tour of where I live.  Some of my friends kept jumping into my shots though.  I put captions on the pictures so you know what you're looking at. 

Here's the tour.

Ben at the front door

Full House

This morning, through miscommunication and dumb luck, Gus, Uyen, and Evelyn arrived with donuts at the same time Jimmy and Tobi arrived for lunch with their daughters Kaeli and Lorelai.  It resulted in a pretty full house for a while.  I'm glad my genius mom brought me some toys.

More kids than I've ever seen in one place

Even Budha Bear got in on the action.

Budha and his new friends

Budha was no match for Kaeli and Lorelai

It was nice, and lunch was pretty good too.

It's almost dinner time and I don't think I've got anybody coming.  It's a weird feeling.  I don't think it's happened in a while.

New Friends

I made a new friend this week.  Her name is Jessica, and she lives just a few houses down from my building.  She's a friend of a friend, and she has offered to stop by if I need stuff.  Last night we went and had dinner down at the wing place in the neighborhood.

Jessica has a medical condition that prevents her from driving a car, so I think she understands better than anyone else I know what it means to depend on your friends.  On that basis alone, I think we can relate.  It doesn't hurt that she also seems like a very nice person.

I wanted to have a picture of her for you, but I forgot to take one last night.  I'll try to get one eventually.

I met somebody else this morning that could turn out to be a friend.  A guy named Tim called me.  I think Tim goes to church with my aunt or something, but he has a spinal injury, and has developed HO to go with it.  His circumstances are a little different in that his injury was higher, and he lost his arms too, but he has since regained the use of some of his limbs.

He just finished several months down at the Shepherd Center in Atlanta, and they advised him not to get the HO surgery.  They also advised a different treatment than what my doctors are currently doing for me.  It's scary how little the doctors seem to know about HO.  He did say that radiation therapy seems to have helped him, so I'll be asking my doctor about that at our next meeting.  Overall, the information I got from him on HO was not encouraging.  He repeated the 12 to 18 month time-frame for the surgery.  I really hope I don't have to wait that long.

Tim also said he got a Baclofen pump to help with his spasms and he's very happy with it.  I'm still hoping to avoid it, but I guess if they don't get better, I'll want to get one of those eventually.

Spasticity

There's something that I haven't talked about on the blog yet that spinal injury sufferers often have to deal with called spasticity.  The muscles that have been disconnected from the brain sometimes get confused and decide to contract or spasm on their own.  It can be anywhere from mildly annoying to kinda dangerous.

When I was in the hospital, I hardly had to deal with any spasticity.  My legs would twitch a little bit, but it was rare and barely even annoying.

Since I left the hospital, and the HO started to act up, my spasticity has gotten really bad.  Any time I move my legs, they will straighten and shake for several seconds.  When I push my wheelchair, various muscles in my midsection and lower back will take turns contracting.  It makes me lean right, left, front, and back at random, and prevents me from pushing the chair until it's over.  When my abs spasm, it feels like a slow-motion punch to the gut.

Just about any time my chair hits a bump, my lower back will spasm and make me lean backward.  This means that if I go outside and try to cross a street, when I hit the bump to climb the ramp to get onto the curb, I lean backward involuntarily.  When climbing a ramp in a relatively tippy wheelchair, this can result in a wheelie followed by a backward fall.  At a minimum, I have to wait until the spasms end before I can push the chair up the ramp and get out of the street.  This is not a good situation, so that's one of the main reasons I don't go outside by myself.

The spasms also sometimes cause problems when transferring from my wheelchair onto other seats.  If my legs straighten at the wrong time, it can throw me off-balance.  That has happened, although it hasn't caused a fall yet.

Another thing the spasms sometimes do is keep me awake at night.  I can't really feel my legs twitching in bed except that they shake the rest of my body.  It's a strange sensation, and definitely not one I can sleep through.  I find that it can get bad when I'm sleeping on my back, but it's rarely a problem when I move to my side.  I don't know what that means, but at least there's a way around it.

Honestly, the spasticity is almost as big a problem as the HO right now, and it makes things that should be boring kinda scary.

It has been suggested to me that my increased spasticity is likely caused by the pieces of foreign bone created by the HO inside my muscles.  It seems plausible that might be the cause, and I hope it gets better whenever they do the HO surgery.  I'm already taking Baclofen tablets to try to help control the spasms, but it doesn't seem to be doing much.  If the spasms persist, it's possible to have a Baclofen pump embedded in your spine, but I'm going to try hard to avoid that.

For now, I think I'm just going to have to deal with it, but I wanted to let everyone know that if you see me lurching around bizarrely, that's likely what's happening.

Hardware

I was finally able to get copies of some of my x-rays off the disk.  This is the hardware they stuck in me.

From the front

From the side

Pretty gnarly, huh?

Downer and Dinner

I feel like I've been kinda mopey the last couple weeks with this HO thing, but I have decided that's not a sustainable attitude given how long I'm going to have to deal with it, so I'm trying to figure out how to get myself out of this funk and back to a more upbeat attitude.

Here's my plan:

• I'm going to try to ignore the uncertainty of the situation, and convince myself that everything is going to work out eventually.
• I'm also going to try to stop focusing on what I can't do and start focusing on what I can do.
• I'm going to try to stop feeling embarrassed about accepting help from my friends and try to just be grateful.

There are probably a lot of life lessons to be learned here about patience and pride, and I think I'm going to have to learn them if I'm going to get through this with my sanity.  Hopefully doing this stuff is as easy as coming up with the plan.

I've noticed that I'm always in a better mood when there are people here, so I'm going to encourage visitors as much as I can.  Along those lines, I want to thank everyone who has brought me food.  It means so much to me not to have to cook or shop right now, and I don't think I've ever eaten as well as I have the last couple weeks.  Besides that, I get a visit with every meal, sometimes from people I haven't seen in a while.

Tonight, Brittany came over and pushed me up to the Thai/Sushi place where we had a sushi feast.  It was incredible, and I'm very happy to know that I live 120 yards from a great sushi place.  Plus it's buy one get one every day if you eat in!

Bought one

Then she pushed me down to the DQ for some Blizzards.

Mmmm... ice cream with candy in it...

Just another example of my friends being awesome.

What have they done for me lately?

I wanted to share with everyone what my friends have been doing for me as far as helping me move.  Yesterday, Gus, Cullen, and Caitlin (my Director of Estate Affairs if you recall), unpacked all of my worldly possessions into Gus's basement and then went through all the boxes labeling contents in detail.  I have no idea how big a job that was, but I'm deeply grateful.  Now if I want something from my house, I can ask Gus and he can put his hands on it almost instantly.  They even found stuff I didn't remember the location of.

I didn't even know they were doing this job.  It takes so much stress off me to have them worrying about all my house stuff without my input, and keeping my stuff at Gus's house keeps me from having to pay for a storage locker.

I am sooooooo lucky.

Here are all of the pictures

Everything I own plus Cullen

Quickie Q7

When I was still in rehab, this guy Todd measured me for my wheelchair.  Todd is a T4 paraplegic just like me, but he's been in the chair for 25 years. Yesterday I got a call from Todd to tell me that my permanent chair was in.  So I called up Gus to give me ride down to the wheelchair shop today to get fitted.

Todd is a real nice guy, and he was very sorry to hear about my HO.  He was real encouraging when I was in rehab about my prospects for being independent when I got out.  "HO changes everything" is what he says about it which is what I'm going to start saying.  Todd assured me that he has known other people who had to deal with HO, and that there will be an end.  It feels good to believe that he's right.

Anyway, Todd tried to setup my new Quickie Q7 to accommodate my hip problems more than the old chair, and I think he was very successful.  This chair is much more comfortable and much lighter than the old chair.  It's much easier to push, and I'm enjoying it a lot so far.

The only thing I don't like about the new chair is the front casters.  They stick way out the side and keep me from parking it as close to things as I'd like.  When I do transfers, I slide sideways out of the seat onto something else.  Now I have to cross a wider gap to transfer across.  So far it has been scary, but nothing bad has happened.  Hopefully I'll get used to it soon.  Other than that, I love the chair.

My new chair

Gus and Evelyn were really good sports about waiting for me to get my chair adjusted.  It took about an hour.  Evelyn has said she wants to marry me and have a wheelchair wedding.  Today, she got to try one out.

Hope

Today was finally the day I had my appointment with the orthopedic surgeon to find out what we're going to do about my heterotopic ossification (HO).  My doctor had told me that it is normal to wait 12 to 18 months after the onset of HO before attempting the surgery.

The orthopedic surgeon, Dr. Bynum was very nice, and seemed generally concerned for my welfare, but admitted that he was not as versed in HO as he could have been.  He did advise me that research shows the drug prescribed by my doctor is not as effective as Aleve in stopping new bone growth, so I'm switching to Aleve.

The other thing he told me is that, as my doctor suggested, they can't attempt the surgery until the HO stops forming new bone, but he did say that it's unlikely to take 12 to 18 months.  I have an appointment with a different surgeon who specializes in HO in 3 months, presumably to assess whether bone has stopped forming.  Eighteen months seems like an eternity to spend as broken as I am right now, but 3 seems like a manageable goal.  That's how I'm going to choose to look at it.  That's the only way I'm going to get through this.  My next appointment is on 10/18, but Dr. Bynum said he would brush up on current HO research and call me with his findings in the next week in case there's a different drug I should be on or anything else I should be doing.  He said that he found a very small study (7 participants) that indicated a certain intravenous drug might be extremely effective, but he wants to do more research before he recommends that.

So to summarize, we have to wait for the HO to stop growing new bone before we can consider doing the surgery.  We're going to check on it in 3 months.  The surgeon that I will be meeting with is a Dr. Danners, and reports are that he is an expert in HO, but Dr. Bynum will be researching whether there is anything I can be doing in the meantime.

I also want to take a moment to mention my friend Gus, who, along with the rest of his family, have given me more help and support than I could ever have the right to expect.  They have come over almost every night that nobody else is here, and helped with literally anything I need.  They have given me hope that maybe I can get through this thing without ending up in a nursing home, and if they help me see this thing through to the end, I will have a debt I can never adequately repay.

Helicopter Ride

On April 21, 2012, I crashed a motorcycle, and was evacuated by helicopter to a hospital.  In spite of the fact that I don't even remember that helicopter ride, I have received the bill.  The helicopter ride cost $23,790.

A few days ago, I got a letter in the mail from my insurance company saying that they were not going to cover the helicopter ride even partially.  I have known about the helicopter charge for weeks, and the possibility that I might have to pay it has been very stressful to say the least.  When I found out it wasn't covered, it was another emotional blow at a time when I didn't need one.

My mom is here right now though, and she suggested I call my case manager at the insurance company and ask about it, so yesterday morning, I did just that.  I explained the situation and asked if she could find out why it had been denied.

I didn't hear back until this afternoon.

My case manager said that the charge is going to bounce around the system a little bit, but ultimately, it will be covered, so I don't have to worry about it anymore.

Tastes like victory

I feel like somebody just gave me $24,000.

I've had so little of it lately, it feels really good to get some good news.

Visitors

It's been 3 days since I've posted, but it feels like 30.  In that time, my parents came down for a visit, and my mom is still here, helping me out.  It's really nice to have somebody staying in the house, and somebody who can go run errands, and help organize this place.  She's out right now, getting stuff.

She has also been cooking.  I could probably survive a nuclear winter with all the food she brought and made.  My freezer is now completely full.

Titus and Brittany finally made it to the apartment for a visit on Monday night.  My mom made lasagne, and we had dinner with my parents.  Dinner was a success, partly because mom's lasagne is good, and in spite of the fact that the apartment is not outfitted to entertain.  We ended up drinking coffee out of measuring cups and using ice cream for creamer.

Dinner was fun though, and it took my mind off my situation for a while.  Visits from friends always seem to have that effect.  Last night Gus was here briefly with Evelyn, and while they were here, I felt the best I had all day.  While they were here, Gus installed the second of my two new under-sink towel holders.

Yes, it's made out of copper pipe

They are simple, and elegant, and the towel is held in place securely with clips since I'm going to roll into it.  I love them.  Before these, there was no reliable way to dry my hands after using the sink.

Mulch

Today, 7 of my incredible friends agreed to brave the 102 degree heat to spread mulch at my house to spruce up the yard a bit.  I couldn't help, but I can say "Thank you", and post the pictures.  Here they are.

I'm told that with 7 people and the little loader, the job was done in 2 hours.  I was very impressed with that.  They were done by the time I called to check on the job.

So I want to officially thank everybody who was involved.  I believe they include:

Caitlin
Cullen
Gus
Brian
Ben
Matt
Rob
Mike (Updated)
Sue  (Updated)


Somebody correct me if I got that wrong.

I was originally told there were 7 participants, but that count was wrong.  There were 9, so my list has been updated.