“So hold your head up and tell yourself that there’s something more And walk out that door Go find a new rose, don’t be afraid of the thorns ‘Cause we all have thorns Just put your feet up to the edge, put your face in the wind And when you fall back down, keep on rememberin’ Every storm runs, runs out of rain” -Hillary Lindsey / Gary Allan / Matt Warren

On Friday night I had the amazing opportunity of attending the Vintage Lochmere 2019 to support Team Drea and ALS research. It was an amazing event with wonderful wine, unbelievable food and even better friends. I was honored to speak about Duane and our  ALS journey. 

The event was put on hold a few times during the night. Two massive storm cells came through. Golf ball sized hail, gale winds and torrential rains. It was bad. The event continued and everyone had a great time. 

All I could do was laugh. Laugh at the situation. As the first cell hit Duane’s photo fell and shattered. That was the final sign I needed to move forward. 

Duane always said to me, “ALS is NOT your cause. You don’t need to deal with ALS for the rest of your life. Don’t search for a cure, there will be no cure in your lifetime. But it is your job to help people. You need too help them. But remember ALS is not your cause”. 

I have struggled with this for a year and a half. What am I supposed to do? What did he mean? How do I separate the two? How do I help people and not deal with ALS? In my mind there is no difference. 

This weekend I realized what he meant. I need to help people. Answer questions, help care for them, teach them and support them. BUT I can no longer be immersed in the ALS world. It hurts my heart. There is no cure. Every week I see someone I “know” die. I have great, wonderful friends with ALS and I will continue to be their friends and support them but I need to take a step back a bit. It’s time. 

I have learned so much in the last five years and I will continue to share and help but ALS can no longer control my life! I feel the weight off my shoulders. 

Thank you Duane. 

– xoxo Victoria

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“One day I’ll be gone The world will keep turning I hope I leave this place Better than I found it” – Drew Pearson / Kesha Sebert / Stephen Wrabel

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I will be the first to admit that I have been very lucky in life.  I have been fortunate to follow my dreams, no matter how many times they changed and have always had the support of my family and friends. 

Today I found out that I didn’t get something that I really wanted, probably the one thing that I wanted more than I have ever wanted anything before. I did my due diligence, did my research, provided the references, followed up but it didn’t matter. This is the first thing that I have gone above, beyond, side ways, backwards and in circles for. 

A bill was recently passed to help family caregivers. They (whoever “they” are) formed a committee of people from all over the country to help family caregivers. Well today, after 6 calls and four messages in three weeks I learned that I did not get a place on the committee. 

The truth is I figured there were really only three to four seats on the committee for everyday citizens, the rest would be for organizations and nonprofits that donate money, because let’s face it that’s the way our government and country works. 

When I found out today I asked questions. Not a single question I asked could be answered. The person in charge of this committee (they are on at least the 6th different person) didn’t know any stats on caregiving. The average age of caregivers, percentage of young caregivers, young spouse caregivers … the number of young spouses who die within a year of their spouse dying, the suicide rates of these caregivers – nothing. 

And you know what – he didn’t care. Any question I asked was pushed aside. He did tell me I am able to go to the first meeting they will have in Washington DC, but they don’t know when it will be, where is will be or how I can find out about it. 

I am disappointed. I could have actually helped, I could have made life easier for thousands of people. But is doesn’t matter. I am sad that the people in charge of this don’t care, they think they do, but until you are IN IT you really don’t. You don’t know the dynamics, the struggles or the real needs to this group of people, until you are this group of people. 

So night I am wiping my tears and figuring out the next step … is there a next step? I know I can help people, but how?

Thank you to everyone who wrote letters of recommendation, nominations and showed their support. I love you all. 

– xoxo Victoria

“Zip-a-dee-doo-dah, zip-a-dee-ay My, oh, my, what a wonderful day Plenty of sunshine headin’ my way Zip-a-dee-doo-dah, zip-a-dee-ay!” – James Baskett

My sister and I went to Florida to celebrate my 40th Birthday last weekend, it was great to hang out with her and do whatever we wanted whenever we wanted. The weather was amazing, the resort was beautiful and we didn’t stop laughing the whole time we were there.

We spent the first day drinking “through the countries” in Epcot. Saturday we played at the Magic Kingdom from open to close riding all the rides. Sunday we spent the day at the pool and then had a delicious dinner in Disney Springs and Monday we headed home. The weekend went too fast!

It was such a great trip. This last month has been full of laughter and so many coincidences from the past … Duane surprised me and took me to Disneyland for my 30th Birthday!

If you follow me on Instagram you already know all this … the real reason I wanted to blog about this trip was to show you the HILARIOUS pictures that were snapped on Space Mountain. hahahahahaha My sister was directly behind me – the camera goes off at the exact same time – how do we look so complete opposite? hahahahaha 

I can’t stop laughing at this! hahahahahaha 

I am excited about turning 40 and can’t wait to see what this new year has in store!

– xoxo Victoria

 

“Quality is remembered long after price is forgotten” -Aldo Gucci

 

I am not a label person, never have been, Duane was.

I follow @seersuckerandsaddles on instagram and watch her stories daily. A few weeks ago she posted about this Gucci watch. I saw it and liked it but didn’t think about it again. The next day she posted about it again and it was about 50% off … thought about it, but decided against buying it. A few days later she posted about it again. I had this horrible nagging feeling to order it, so I did. It arrived, I looked at it and put it back in the box, ready to return it. It was extravagant and not something that I normally buy. 

A few days later I still had a nagging feeling about this watch. I went back to the box, opened it up and put it on. I fell in love. It fit perfect and I loved it! The nagging feeling stopped. 

Then I remembered …

When I met Duane he wore a Gucci watch that he loved. He wore it for years but after beating it up on fires, water skiing and fishing it looked like crap. For his 40th birthday I got him a new one. He loved it. 

So for my 40th birthday this year I bought my self the same present I bought Duane. It’s weird how things come back around in new ways. I am constantly being shown Duane is still around. 

– xoxo Victoria

“Loose Lucy is my delight She comes running … Round and round and round and round … Singing thank you, for a real good time” – Jerome J. Garcia / Robert C. Hunter

Lucy Lucy, Loose Goose, Lucy Loo, Lucifer … Lucy my love. I miss you. I will always miss you. 

This is something I haven’t written about or talked about a lot, or at all really. In all honesty my heart is still so broken. In August of last year I decided Buddy and I needed a new family member … enter Lucy. The craziest, cuddliest pup I have ever met. All she wanted was to be touching another living thing and to eat. She was super easy to train, a complete spaz and loved Buddy more than he was comfortable with. hahahahaha She was just what we needed. 

On March 28th Lucy was killed. A school bus driver swerved onto my property and killed her. It was very graphic. It was the most horrible thing I have ever seen. The driver didn’t stop and it took 24 hours, the police, school principal, parents and lots of digging for me to figure out who did it.

I was devastated. For her, for Buddy and for me. I couldn’t stop crying, as I type this I am still crying.

She died alone. I was 20 feet away, but she was alone when she died. I am 100% sure she didn’t suffer. She didn’t even know it happened, but she died alone. I believe with everything I have that no living being deserves to die alone. Holding a hand or a paw in those last moments is how a life should end, with the passing soul knowing they were loved. So my biggest hurdle, the thing that hurts my heart more than anything, the thing that makes me cry the hardest – did she know I loved her? Everyone keeps telling me she did. I told her everyday, I showed her everyday, but she died alone and that should never happen. 

I just miss her and love her and hope he knew that. Buddy misses her to! (He created a “shine” for her, I’ll post a photo of it tomorrow).

Fast forward to tonight … Buddy and I were driving over to my sister’s house. I was driving on the 2 lane highway and I notice a car coming towards me swerve into my lane and swerve back and keep going. They were avoiding a dog… a dog who had just been hit, whose tail was still wagging, laying in the highway. I immediately pulled over and put my hazards on, the car coming in the opposite direction did the same. (Both of the cars behind us also stopped and held traffic for a good 4 minutes for us to run onto the highway and help this poor dog). We carried him onto the grass and the other girl looked to see if the neighbors knew the dog … they did. It was a neighbor’s dog – their 3rd dog in 6 months to run onto the highway and be hit. The went to the house, no one was home, another neighbor called the owner. He said, “it’s ok, just leave it”. WHAT?????? I was blown away by this, who says that? I stayed with that dog as the blood gurgled in his throat and he took his last breath. I kept my hands on him the whole time, petting him and telling him it was ok. 

When I knew that he was gone I stood up. Another neighbor thanked us and said he would take care of him if the owner didn’t. i hate to leave him, but there was nothing more I could do.  I joined Buddy in the car and drove to my sisters. Buddy climbed into the front seat and licked my arms and laid his head down, he knew what had happened.  

When I got to my sister’s house I realized I was covered in blood. She gave me towels told me to take a shower. All I could do was think how thankful I was to be there for this dog. Show him love in his final moments. I am so sad. The owner’s callousness made me question human kind once again.

– xoxo Victoria 

 

“I look at the human life like an experiment. Every new moment, every new experience, tragic or otherwise, is an opportunity to gain a more accurate perspective and helps lead me to clarity.” – Steve Gleason

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May is ALS awareness month. May is Mental Health Awareness month. May is also Cystic Fibrosis, Lupus, Arthritis, Hepatitis Awareness month … and many more.

Earlier today I posted on Facebook and Instagram about ALS TDI’s campaign “Ask me about ALS”. It’s amazing idea, but most people who are on my “friends” list have seen me posting about ALS for years. They know I am available at any point to talk about and give information about the brutal disease. I assume people in my circle are inundated with information about ALS. The facts and stats are things most of these people have heard, seen and know, they supported me through Duane’s battle, they learned as we learned. So if I post on my platform where does the information go? I am not educating anyone new. 

So instead of just talking and sharing about ALS I opened it up. Ask me about caregiving, death and grief. Ask me about what caring for you dying husband does to your mental state. Ask me what caregiving does to your body, your energy, your health. Ask me what death does to family dynamics. Ask me what telling people you are a young widow is like. Ask me about people’s judgment. Ask me about hospice. Ask me what death looks like, what it feels like to observe it. Ask me what grief is like. Ask me anything. I am an open book. I want to help educate you on anything I can.

Yes, May is ALS awareness month, but there is so much more to ALS than the disease. Ask me about the love. Ask me about the beauty in holding someone’s hand to help calm them. Ask me about the sitting in silence and being at peace. 

For the last few years I have had people contact me weekly asking about ALS, about caregiving, about death. After my post tonight new people contacted me, with questions and their stories. I love hearing them, I love talking to you. I love helping.

I am always here to answer your questions – not just in May.

– xoxo Victoria

“Like a surgeon, hey Cuttin’ for the very first time Like a surgeon Here’s a waiver for you to sign” – Al Yankovic / Billy Steinberg / Tom Kelly

I have been on the nursing track since July. It has been an amazing learning experience – not in the way you’re thinking. I have learned so much about what I don’t want to do. hahahahaha

I have learned that working in a hospital is hard. I have learned that going to school, though needed for the actual license, was a waste of time. I already knew how to do everything they taught me and the way I did it, at home, is the way they do it in the hospital, not the way they teach you in school. I learned that seeing people in pain breaks my heart. I learned that every time a patient dies, it’s like the first time. I learned that maybe everyone was right and it is too soon. I learned that my heart can’t handle the constant loss.

I was placed in a very difficult unit. A unit with extremely fragile patients. These patients have intense needs. My clinical unit is the same. I have no problem with hard work or the level of work that is needed in these units, but my heart does. I was coming home from work every night in tears, with stomach aches and not sleeping. The level of care that I am dealing with right now, although I LOVE it, is too much for me at this point. I love making a connection with my patients and actually caring for them but the situations don’t always end with someone being wheeled out in a wheelchair on their way home.

I am in the process of hopefully being transferred to a new unit or a new hospital. A unit where the outcomes will be more positive and I will get to see the joy of my job. A place where the laughs outweigh the tears. 

Thank you everyone for your constant support and love. Eventually I will find the place I am supposed to be. 

– xoxo Victoria

“Take these broken wings and learn to fly All your life You were only waiting for this moment to arise … Take these sunken eyes and learn to see All your life You were only waiting for this moment to be free” – John Lennon / Paul McCartney

These last few weeks have been a little rough. I got what I thought was my dream CNA job. I didn’t apply directly for it, I was matched through recruitment with the unit. It’s an intense unit, at an amazing hospital where I would receive a lot of hospice and palliative care experience. I was excited about what I would learn and how would I grow from working with this population. 

Well fast forward a few weeks … patients pass away, they get sent to ICU, they come back, there are major emergencies, patients suffer, families suffer … 

My heart is broken. Watching people suffer … it’s too much. I have been coming home crying and have had major stress and stomach aches. The issue was I knew I had 90 days to get through probation and six months before I could transfer. I was already counting down the days. 

The other day I was on the treadmill talking to myself about what to do. I couldn’t stay on this unit, it would crush me. My heart couldn’t handle it. I was trying to talk myself into not quitting and sticking it out for 6 months and then asking for a transfer. While I was jogging I thought maybe, possibly, I could go in and explain my situation and get some sympathy. Worst case scenario they would tell me that I needed to stay or I was being let go. I went back and forth with myself … I can’t quit. Duane always said I never finished anything … I had to stick it out. 

I looked out the window and saw a Red Cardinal. I knew that whatever I decided was ok. I knew that I had support and needed to make the decision that is best for me. I need to take care of myself because no one else will. 

I went into work the next day and explained my situation. I am transferring. I’m not quite sure where (hopefully Mommy and Baby) and I don’t know when, but I am out of the heartbreaking unit. I am proud of myself. I usually don’t stand up for myself in these situations and just push through. But I have learned that peace and happiness are the post important things in life. If you are not at peace with your life or your decisions then you won’t be happy. All I want is to be happy. 

So for the next few weeks I will be in clinical another hospital for school and focusing on my writing and being happy. 

– xoxo Victoria

More information on red cardinals … https://www.californiapsychics.com/blog/angels-guides/meaning-red-cardinal-sighting.html

“Welcome to my house / Baby take control now” – Flo Rida

I have an alarm. I installed it as soon as I moved into my new home. I didn’t have one before – while living with Duane or living alone before Duane. When he passed away and I moved into my own home, I got one. I didn’t even think about it, I just called and got one. I have friend who recently lost her husband, also to ALS, and she put in an alarm too. She told me this and I laughed and just said me too. 

I laughed because why did we do it when they passed? We spent years caring for our husbands who were not able to protect us if someone broke in, but we either still felt safe or we were to tired to care about security … I’m not sure which one it is! HAHAHAHA!

Duane and I had a serious conversation about safety one night. We were living in Lake Havasu City, he had ALS and could stand but no longer walk. He could no longer use his hands and people were starting to have a hard time understanding him.  One night  I woke up because I thought someone was breaking in – it was the wind … but before I army crawled across the house, hiding, to spy on the noise, I was so scared. Duane was awake and so we started talking about it. All of a sudden hit me, if we were home and were robbed or if there was a house fire how would I get him out? I immediately said I would drag him out. I will never forget what he said.  

“You run. You grab Buddy and run. Leave me. If it’s a “robber” they don’t want me and if it’s a fire you need to get you and Buddy out. Don’t worry about me”.

Obviously I started crying and said I would never leave him and I would do anything to save us all. He was very adamant about me just making sure I was safe. Me and Buddy.

 So I guess, by installing an alarm (and having smoke/ carbon monoxide detectors and fire extinguishers in every room) I am making sure I am safe. I am taking care of me and the dogs because Duane isn’t here to do it anymore. I am doing what I know he would want me to do. Being safe. 

– xoxo Victoria

(On a side note. Everytime Duane and I left each other, whether for work or to the store he would always say “Be Safe”.)

“Tumble outta bed and I stumble to the kitchen Pour myself a cup of ambition Yawn and stretch and try to come to life Jump in the shower and the blood starts pumpin’ … Workin’ 9 to 5, what a way to make a livin'” – Dolly Parton

 

Well this week was one for the books. I never thought I would see the day when I had to get up at 4:45 am four days in a row for work. So many of you are laughing right now. But seriously – I was not made to pull 4 all-dayers in a row. 

I started work this week at the hospital and I had orientation ALL WEEK and school at night two of those days … and if you read my last post it was also a heartbreaking week on a personal level. 

But seriously, 4 days of actual real work. What was I thinking? It’s done now. Next week I start my 3 days of 12 hour shifts. I used to work conventions and had to be up early for a week straight but that was years ago. And after those long weeks Duane always gave me a “prize”. Once it was a bike he found with no seat, once it was a light up, pink fishing pole he found and the best was a 1970’s gaudy lamp with crystals dangling from it, he found. I still have the bike and the lamp. The only prizes I got this week were bags under my eyes, a dog sitter bill and a sore back. 

But I loved it. Learning and getting ready to start helping people. Hopefully this week is full of love, helping and sleep on my days off! hahahaha

– xoxo Victoria