That Something

Two years. That’s how long we have been living an ALS Life. Never in a million years did I imagine that a horrible, terminal disease would find its way to my family. After all, haven’t the Big He and I been through enough with the loss of the babies and the Little He’s early arrival. There are no passes or limits to the burdens we have here on Earth. In the two years since the diagnosis, I have often wondered how in the hell do you experience this level of devastation and not go bat $hit crazy. What is that something that some people seem to have to help them walk through the Valley.

The Big He and I have managed most of our difficult situations through the liberal use of inappropriate humor. Like, REALLY INAPPROPRIATE humor. Even some of the saltiest veterans have cringed at some of the things that have come out of our mouths.  I have had people around us tell us how strong we are. I am not sure that strong is the right word. 

I think a better word for those folks that seem to weather the storms better than others is RESILIENT.  Resilience is not something you are born with it is something that can be learned. It is a skill you develop. It is the capacity to cope with stress and adversity. I look at my past and I can think of people in my life that have shown me what this means. I have learned from them. I have also found a group of people (our battle buddies) that should have their pictures in the dictionary next to the word resilient. Since the Big He’s diagnosis I have connected with a group of caregivers who are the wives, husbands, sister’s and brothers, mother’s and father’s to veterans. Not just veterans with ALS, but yes there are some, but caregivers to disabled veterans with wounds both visible and not visible. Veterans who have had catastrophic injuries in recent wars and those veterans that have dealt with cancer, strokes and other devastating illnesses. This is a subgroup of caregivers in America today. The amazing, resilient people are every age. They are men and women who do remarkable things. It is these people, the caregiver’s to veterans, that I now look to for guidance as well as look at in awe regarding living the life that chose us as resilient. So how do they do it? Their resilience comes not from staying strong every minute of every day. No, it comes from experiencing the difficult and trying times. It comes from being vulnerable and wondering if you are doing everything you can. It builds even while you are soaking in a tub with a bath bomb, crying and wonder WTH. But these amazing people don’t live in the difficult or vulnerable experiences. They move on. They recover and get back to the job at hand. Ok, they also have very inappropriate and twisted sense of humor, but that’s probably what drew me to them in the first place because their coping mechanism was the same as mine and the Big He’s.  

As we move deeper into the progression of Alpha Lima Sierra,  both the Big He and I will need to hone our resilience skill. I know that when we get down, we can count on our battle buddies to let us have our moment but then tell us to dry our tears and get our butt’s up and get back to business.   

TOUGHNESS IS IN THE SOUL AND SPIRIT, NOT IN MUSCLES  -Alex Carras 

All my love,

The She

 

The Big He’s update: He is still receiving the infusions of Radicava. Are they helping, not sure but we can say they are not hurting. The Big He is still going strong and fighting this damn disease every step of the way, even if his ability to take steps on his own are coming to an end. He is a fighter. He is RESILIENT.

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Spring Break 2018

We did it! Our family did our first major road trip. We drove over 2000 miles in 7 days. Our main destination was Colorado Springs to see one of our Air Force brothers (L. Fischer). We had an amazing time checking out the Air Force Academy and Garden of the Gods. We also went to a great little town and because Fisch did all the driving while in Colorado, which by the way was so welcomed, I was able to drink a margarita which was the size of my face! From Colorado Springs we headed to Albuquerque, NM for the night. The significance of ABQ was that I spent 2 yrs there at the University of New Mexico and on March 5, 1990 at the base of the Sandia Mountains, the He proposed. He proposed one day after my 20th birthday and left a few days later for his first Duty Station,Guam.IMG_2018-03-16_19-46-33.JPG

We left ABQ and headed to White Sands, NM to play for a bit before stopping for the night in El Paso. By stopping in El Paso we were able to spend the evening with more family from our military days. Actually it was M & S who came to see us last year. We loved seeing them but wished it could have been a longer visit.

The last leg of the trip was from El Paso back to Austin. It was a lot of driving but we did it and we are still talking to each other. It was another opportunity to tell ALS to suckit!IMG_2018-03-18_13-50-02.JPG

Now, for the behind the scenes experience:

Handicapped traveling takes more planning then non-handicapped travels. Its more than getting a handicap room.

For starters, since we were heading to higher elevation we needed to make sure the He would not have any breathing problems. While giving just oxygen to ALS peeps is not advised we did have some tanks waiting for us along with the necessary piece to feed the oxygen into the He’s ventilator. We also invested in a pulse-ox to keep on top of his needs. We Amazon’d a rollator to the hotel as we waited too late to borrow one from the ALS loner closet in Colorado. We did this because we took our truck so Frank the Tank and Lou the mobility dog could come with. Which meant not a lot of extra room in the back of the truck and cab space was very limited. Lou the dog takes up a lot of space!!

When packing, I had to make sure Lou had all the things he needed as well as all of the equipment the Big He would need plus backup equipment, plus backup batteries for the equipment. There was also the extra dressing and tape for cleaning the He’s button and tubing for any supplemental calories we may need to give via the button.

Since the Big He no longer drives that was my job. The Little He rode shot-gun and the Big He and Lou had the back seat.  There was a ventilator set up in the back for the Big He just in case. Lou the dog had some toys in the back along with the very expensive equipment.

I can tell you that not all hotel rooms that say they are “handicap accessible” are REALLY accessible. While ADA requires grab bars, wider doors, non-slip flooring, roll-in showers with an adjustable shower head, the layout of these things are not always in a way that makes things easy. But you know what, you adapt. You make things work. You provide a little constructive criticism to the on-call manager so they understand where improvement could be made.

At the end of the trip we were all exhausted but had a great time. Seeing new things together as a family was amazing and definitely provided us with wonderful memoires. Visiting friends, no not friends, family only added to the amazing time we had. These are people that I am not sure if they truly know how special they are to the Big He and I.

I can tell you that we learned we CAN travel with ALS it just takes a little more effort. We know that as the Big He progresses it will take even more effort and possibly another person to travel with us for extra help. But we can do it. The three of us were made to get out of our comfort zone but that’s how we stretch as people right? Finally, I personally learned that I would make a crappy truck driver but with stops I can be the designated driver, unless Fischer is with us, than he can drive.

All my love,

The She

 

How is the Big He doing? As he likes, to say, he’s good but progressing. His ability to walk unassisted is coming to an end. He definitely needs the rollator if not in the wheelchair. He is also finding it hard to put socks and shoes on and needs help sometimes. Turning over in bed is becoming harder for him and we both know soon he will need help with that. Getting ready in the morning is starting to exhaust him which again, means soon he will be needing assistance with that as well. We are now using his button (feeding tube) at night to give him some supplemental calories. Finally, one of the harder things ALS takes is a person’s voice. We are seeing the end of the Big He’s voice. He has been practicing with his communication device and been busy trying to record phrases while he can.

ALS is shi!!y disease. We continue to pray that a cure is found and found soon. As they say in this community, ALS is not incurable, it is underfunded.

 

 

Reality

There are times when the Big He and I are just hanging out and talking I forget about ALS. There are times when I wake up and think, what the hell…is this really happening?.  It’s a new year and as people move forward embracing the future, I want to stop time. I don’t want to move forward. I don’t want to embrace the future. The future is scary. The future will only bring progression.  Only those that are on  or have been on an ALS journey get it. I see friends and family go about their day, dealing with the mundane things that we must do and I get mad. Probably a little jealous too. I am mad this happened to us. I am jealous those around me are truly  unaware of what ALS is and what it does. To be blissfully ignorant again.  I think, if only we had to deal getting up and going to work or getting your kid to school or practice. But that is not an ALS life. The reality of living an ALS life for the most part sucks. Yes, there many things I am able to appreciate more because of this life but the disease, sucks. From the outside looking in most people may think we are doing a good job. I have heard folks say they just don’t know how we do it. Well, I can tell you I don’t know how we do it either.  Living an ALS life is living in a constant state of grief. There is actually a name for it, anticipatory grief. As your PAL loses function, you grieve. You grieve the impending loss of another function. It kills me to see the Big He having to go through this. I want to take it away but again, the reality is I can’t.

The reality is we have to get up everyday and live an ALS life. For those of you who do not live this life, be grateful. Count your blessings that you do not know this disease.

Yes, I am aware this is not the most uplifting post, it was not supposed to be. It reflects what I am feeling right now. Fear. Frustration. Its the reality of this life. Good days. Bad days. Days you just want to yell WTF!!!  Maybe tomorrow will be good.

All my love,

The She

About the He. Well, he is progressing. He is no longer driving. His voice…it has changed. He still can talk in his natural voice but now it has the ALS slur. He needs a little bit more help with breathing during the day now. ALS Sucks!

 

 

 

 

Reflecting

20180101_104357Happy New Year! We all made it through 2017…ALS can go suck it!

While there is progression, the Big He is still walking (very short distances), talking (kinda getting that drunk ALS accent) but despite it all he is going strong.

I have had a draft going for a day now, I write and I delete.  You know what, the biggest thing I can say about 2017 is WE SURVIVED YEAR 2 of the monster  disease known as ALS! So again, ALS, you. can. suck. it!

We survived progression. We survived traveling with a disability. We survived reduced ability to walk and to breath.  We survived the VA. We survived 2 surgeries, We survived figuring this new life despite wanting to scream and yell and hide from this new reality…ok, maybe thats more me then then the He’s. They survived me. I survived them.

Look out 2018, look out ALS, we are hitting our stride and will hit this new year and new life like survivors!

All my love,

The She

 

 

 

Traditions

I don’t know about you, but this time of year I start getting nostalgic. Rem20171217_192256embering past Thanksgivings and Christmas Holidays. The things you did, the feelings, the sense of pure joy. I remember a Barbie multi story home that my sister and I received when gosh, I must have been 8 or 9. I remember the excitement of coming down the stairs with her and seeing it Christmas morning. I wish we could get that back, the pure excitement of seeing what Santa had brought. The no concern for anything except when would I be able to play with it. The feeling of being safe, being happy, not just knowing I was loved but feeling loved. There was such innocence back then. I think that is why this time of year, we try and re-create those  traditions, trying to get back if only for a few days those feelings. For me, Christmas is not Christmas without pecan sandies or hot chocolate with peppermint. Last year, I will be honest, I don’t really remember Christmas much less Thanksgiving. I do however remember our trip. Ahhh who could forget that paradise.

This  year I have tried to be more present and make sure we continue with the traditions the Big He and I have created together over the past 27 years. To make sure the Big He, Little He and I have that feeling of joy and love a time before Alpha Lima Sierra.  It’s hard I will admit. While trying to keep traditions there is the ever present Alpha Lima Sierra. Not knowing how many more Christmases we have as a family brings a lot of mixed feelings. While I want to keep our traditions going, I know in the future those traditions will bring sadness knowing that the Big He is not there to share.

We have for pretty much our married life done white lights on our tree. I love the look however this year we went and got a new pre-lit tree. The amazing thing about tree’s these days, they come with LED lights that you can switch from white to colored. I have noticed that I am preferring the colored lights. Changing it  up has been nice. Just like with Thanksgiving, we did a cruise instead of the big family gathering with turkey, dressing and the other sides. Part of me thinks 20171217_192227changing things up might help me get through the holidays when its just the little he and I. The other part knows that there is nothing I can do that will make this time of year easy.

Changing it up, keeping the tree set to colored lights could also be me trying to get that feeling from when I was little. That is what we had…a big beautiful tree, full of ornaments, with bright colored lights. I guess I am searching for that innocence from my childhood. Trying, just for a moment to remember that feeling of pure joy and of feeling safe.

My Christmas wish for my family and yours, if only for a moment, is to feel love, peace and pure joy. Let the stress of life take a back seat and just enjoy being with family and friends. And if this year you are missing a loved one, I pray your heart remembers the joy and love you shared with them and you find the comfort you need to make it through.

We wish you a very Merry  Christmas. God Bless you and your family.

The She

 

ABC’s of Fall 2017

Yeah, Yeah, Yeah I know it’s been awhile. September – November have seemed to fly by. I mean we are only a few days till December. Seriously?  I don’t like it one bit. I want to hold on to every minute but they just slip out of my hands as fast as I catch them. Our time lately has been filled with Advocacy, Being Grateful, and Cruising for a little get-a-away.

Advocacy

Being handed a crappy situation can either make you go inward to deal with things in your own way and on your own time or makes you so damn mad you push things outward, kicking and screaming for someone to hear you. Guess which way we went…

Advocacy means so many things. For us, we are constantly advocating for the Big He and other disabled veterans with ALS with regard to the VA for services and equipment. Recently we were denied a program that would place someone in our home to help the Big He with making lunch and being there when he eats due to choking concerns. With one program, the VA did not even submit a referral for a particular homemaker/caregiver program. Keep in mind, I am lumping these scenarios as “The VA” but in truth, it is the individuals we are working with. For the most part, once you get to a decision-making level, individuals seem to make better decisions regarding how to handle situations. One of the most frustrating part with working with some at the VA is the inability to identify solutions be it other programs or even suggesting taking it to management to get their input.  I have heard some refer to this as the difference between old VA and new VA. It’s a culture of status quo or a “that’s not my job” attitude. At a time when the VA is getting hammered for so many things, you would think that management would be encouraging solution oriented approaches. I have also observed that the old VA approach to things is intimidation with requests. Questioning some at the VA regarding how decisions are made are not met kindly. Lucky for us, the Big He and I have both been government employee’s and that way of thinking does not phase us. We clearly understand the hierarchy in government offices and how to get resolution to our problems. We also understand that most of the time you need to take a bottom up approach but there are those times that dictate a top down approach. Needless to say getting denied did not go over very well with me especially when the VA uses portions of their policy to deny us but leave out the portions that would apply. I am happy to report that after a meeting with decision making individuals at our VA, there was a solution to our problem and the Big He will be getting someone to help him with lunch time routine to begin with.

Advocacy for us has also has been raising awareness for Alpha Lima Sierra. We do this constantly. There are many people that are unaware of what ALS really is or that there is a veteran connection.  In early November, we took part in our 2nd ALS Association Walk. We had a great time and had about 20 walkers with us. Even our new family addition, Lou, got in on the advocacy by raising money for the cause. He did great and raised over $1000.00

Being Grateful

I will be honest, at times it’s hard to see things through the eyes of gratitude. We are so consumed with this ALS life that taking a step back is hard. I try every night to be thankful for my many blessings. This includes trying to find something to be thankful for in an ALS world. I am grateful that we are meeting so many amazing people in this journey. I am grateful that the Big He can still talk and say “I love you” as well as he can still walk (short distances). I am very grateful we have someone in our life now that is helping us. She will be the Big He’s caregiver while I am at work.

Cruising

We did a Thanksgiving Cruise with the Big He’s Dad, Stepmom, Sisters, the one Brother-in-law and their kids. We have done several cruises but this one the Big He was more limited to what he could do. It was hard for me to see this and I can only imagine what it was like for him. We had a great time but it did open our eyes to limitations that disabled people deal with daily. Traveling takes a lot more thought then it once did. We figured things out and had people to help along the way. There were new friends that would help secure an empty elevator for us, or move people out of the way so Frank the Tank could get through. Yes, we took the tank wheelchair and it was a hit. That alone helped us do some advocating for The Independence Fund and Carlson Mobility and how they help disabled veterans of all era’s. There was also the chance to bring up ALS and its impact. If we educated one person or made them more aware, that makes me happy, that is another thing to be grateful for; being able to communicate to others what ALS is and what it does to people and their loved ones.

I think that pretty much covers what we have been up to lately.

All my love,

The She

The Big He’s update: He is about to start his 4th cycle of Edarvone which was shown to slow the progression by 30%. Can we see a difference? Not really. ALS does not progress in a linear way. It can be fast, slow or even pause for a bit, but it’s always moving forward, always progressing. The Big He’s speech is really starting to be impacted. While he can still talk, he does get tired and you can detect some slurring. He is still eating like a champ and not needing his feeding tube/button. Walking poops him out so it’s a common thing now for him to be in his chair when we are out and about. Please continue to keep him in your prayers and that this disease halts long enough for us to see a cure in the Big He’s lifetime.

Suckitals

Toms T

ALS strikes without discrimination and there is no cause or cure. More than 30,000 people across the country are affected by this disease that slowly robs their body of the ability to move and eventually breath. Military veterans like Tom are twice as likely to be diagnosed with this disease than civilians. ALS is not an incurable disease it is underfunded.

That’s why my family is walking this year at the Austin Texas ALS Walk on November 4, 2017. We have set a goal and I hope we can count on you for your support in our efforts to help families like ours.

 

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