Here are some photos from the last fishing trip we went on when we caught yellowfin (tuna).  We had so much fun, Duane loves being on the water.  It was also the first time his brother Derek caught a Tuna!  Hopefully we will be able to go out again in the next week of so as there seems to be a small school of tuna still around!

– xoxo Victoria

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I was recently sent this picture of Duane.  It was taken about a month before we met.  Along with the picture were some videos.  I got to hear his voice.  I forget what he used to look like, I forget what he used to sound like.  I have a voicemail from two years ago…but it’s not the same as these videos.  He’s still funny and still a lot of fun.  But it’s different now.  I fell bad saying it, but I know he feels the same.  I think…. I miss Duane, but I don’t, he’s still here I miss our old life together, but I don’t we still have a great one.  Everything I think I miss we still have just in a different form. 

– xoxo Victoria

I try to stay positive and happy as much as possible.  I try to make everything as good as it can be.  But come on… this effing sucks.  I am tired, I am lonely and I am sad.  ALS sucks…completely and totally sucks.  There is nothing else to say but it sucks.  There is no cure, there is no treatment and there is no happy ending.

If this post ends up sounding selfish and bratty I’m sorry.  I am in a feeling sorry for my self mood. (I know I shouldn’t, I’m not the now with the disease, so you can either read this and move on or just ignore it, I am basically just journaling here.)  

All I want is a hug – not a hug that say hello, not a hug that says nice to meet you, not a hug that says you my brothers’, sons’, friends’, patients’ …. wife,  so I’m hugging you hug, but a real hug.  Not a pat on the back not a one armed touch but a real big actual hug.  You don’t realize if you don’t get them how much they actually mean.  

There is so much I want to say here but so don’t want to offend anyone.  Too many times I have tried to say something with it being taken wrong – blame placed and feelings hurt.

I am here 24 hours a day. 

I attired of being treated as though I am hired help.  I am tired of being treated like people are doing me a favor.  I am tired of being treated like no one can tell me my loss is not and will not be great.  I am tired of being told how to feel.  I am tired of being told that I don’t understand.  I am tired of being made to feel as an outsider and not family.  

That was just blaghgdliuhjsdbiuh.  I will post a happy, smiling post tomorrow!

– xoxo Victoria

Duane asked me if I WANTED to learn how to rebuild the carburetor on the station wagon – I said NO.  So the next day – NEXT DAY, he asked me if I would help him do something on the statin wagon.  Outside we go – he wanted me to fix the transmission… WHAT?!?!?! NOOOOOOO!!!  This is the photo I snapped of him trying to tell me how to do it as I’m telling him I don’t want to and him telling me it will “only take a minute”!

– xoxo Victoria

They are NEVER apart.  Buddy never leaves Duane side.  He is either licking his face or sitting in his lap.  They are like siamese twins…connected at all times.  Buddy is such a good dog.  If Duane is having a painful or progressing day Buddy can sense it and stays right with him.  It’s one of the coolest things I’ve ever seen.  It makes my heart happy.

– xoxo Victoria

On our second day in San Diego, with the house still full of boxes, a bed still in pieces, no food other than junk in our bellies we went to the beach.  

There are no words to explain the happiness on Duane’s face (probably mine too underneath the tears of joy) to be able to sit in th beach loaned wheel chair and be pushed in the waves.  AMAZING!

My heart is full!

– xoxo Victoria

A few days before we moved back to San Diego we were fortunate to have some of Duane’s great friends come visit us in Lake Havasu.  

We did the usually pontooned on the lake, drank on the lake and Duane instructed them on how to attach a trolling motor on the pontoon – better them than me!!  They also helped take apart furniture and move everything into the garage.  They actually worked more than they had fun I think!!

Everyone had a great time and we are so glad that Brandon, Greg, Jeremy and Mark came to visit.  Come again!!

– xoxo Victoria

I usually post happy, fun things on here, but as time is passing and Duane is progressing I am getting bitter.  Not at him, not at the disease but at the government – local government.   There is an overwhelming amount of evidence that toxins (inhaled from fires) cause ALS.  (Not always – there are other causes…) There are more links than I can post, more evidence than I can read, more examples then there need to be that show this.  

Congress passed a law in 2012 that states (i’m paraphrasing here) if you were in the middle east while serving in the military and you develop ALS it is considered and occupational disease.  It’s because of the oil rig fires.  

So they know there is a connection.  

It’s so frustrating.  

We’ve known this for awhile.  We have kept our thoughts about this to ourselves – mostly.  But as I see other fireman with the same or similar or worse issues than Duane has it really become obvious and so so sad.  It’s so hard to watch Duane progress and to see other guys that were on the same major fire as him have horrific issues.  It breaks my heart.  These firefighters put there lives on the line everyday and when something like this happens the government, the union…all turn a blind eye.  The bottom line is that it is all about money.  

Sorry for my rant – it’s just so hard to these guys in such a bad place.

Hug a firefighter today!

– xoxo Victoria

Yes, it’s been awhile since I blogged.  Over the next few days I will attempt to do a few months worth of blog posts.  We moved back to San Diego at the end of July.  We can say we moved because of the heat in Havasu, the pool was broken, we wanted to be on the yacht more…but when it comes down to it we moved because the time had come to be around family.  To be in a place where we have a little more help, a smaller home and are closer to Duane’s happy place – the yacht.  

It’s been an adjustment and the house is in no way handicap accessible.  It is harder to move around in, harder to get in the bathroom, the bedroom and the shower, but we are making it work.  

We miss Havasu.  We miss the freedom.  We miss the lake and pontoon.  We miss our hospice nurse.  We (I) really miss our privacy.  

Moving was the right thing.  We still love to go fishing and still love to have visitors.  (We have had quite a few since moving back).  If you want to come visit you are welcome.  Let me know if you want to come down and I can make sure the yacht is ready for you to stay on!  Hopefully we’ll see you soon!

– xoxo Victoria

Great day on Lake Havasu with Spencer and Jenna.  We got up early, loaded into the family truckster and hit the lake.  With Jenna and I sweating on the back of the boat, Duane and Spencer fished, finally catching this 4 pound large mouth.  It was a fun morning and so glad we got up early to beat the 112 degree afternoon heat.  

– xoxo Victoria