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.