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Tag Archives: marriage

Freedom and Frustration…

Our trip to the SCI Unit was interesting, eye opening, helpful and sad.  It seems that there is a lesion causing all of this, and it did not respond to IV steroids.  It is likely caused by going off Tysabri and taking a drug holiday.  It seems these changes are going to be fairly permanent as we are now 2 months in with very little improvement.

He is now fighting for his freedom at every turn.  What does that look like – well it looks like him refusing to use his walker and instead ending up falling down many times a week.  It means him dragging his butt up into his truck rather than use the very expensive turnout chair that the VA so graciously installed for us.  It means hauling himself up the 4 steps in the garage rather than allowing me to push him up the beautiful new ramp to the front door.  It means ignoring me when I am just trying to keep him safe.  It means laughing in my face and not responding when I try to reason with him.

He is fighting for freedom and I am so frustrated I could SCREAM.  Thankful I get a break this weekend as he is staying with the neighbors for 2 nights and I am going out of town for a movie shoot.  It will be a roughing it kind of weekend in a cabin with heat but no running water.  But it will be a weekend when I am only responsible for my own welfare and safety and no one will be defying me and fighting me at every turn.

I wish he could have his freedom back and I could let him be.  But for his safety I can’t.

 
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Posted by on November 8, 2014 in Daily Living

 

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Moving right along…

The turn out seat is installed in our truck and we are currently at a guest house for the night and will be checking into the SCI and MS clinic tomorrow morning at 9am.  Tomorrow is sure to be a very long and tiring day for both of us.

Things that I’m hoping for and ASKING for:

  • A lift – something to get him back up off the floor should he fall and be unable to assist me with getting back up
  • Regular Physical Therapy in our home!
  • Cognitive or Speech Therapy or both (he is still struggling to speak)
  • Assistance getting his claim fast tracked in NYC at the Regional office.

I’m sure I’ll think of more things as we go along.  So three days of HELP is coming up and I am so thankful just to be here.  Also loving the guest house where we are staying tonight as they have a handicapped accessible room for us and a lovely guest home with TV for my addicted husband.  And DINNER was provided too, I had buffalo chicken mac and cheese, he had some minestrone soup and bread.  All for the bargain of $35 per night.

 
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Posted by on October 28, 2014 in Daily Living

 

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A new low for me…

bitch

Today I found myself in the men’s room.  TWICE.  First time at the VA when my husband pulled the call button for help and a shrill alarm started sounding outside the door as well as flashing lights.  I went in to check on him and we turned off the alarm, but it rang for nearly a minute.  Sadly no one else showed up so those alarm buttons in the bathroom at the VA?  Don’t expect much.

The second time we were at Outback for lunch.  He insisted on walking in rather than me getting out his wheelchair.  We get from the truck to our table (about a 15 minute excruciating process) and then he says he needs to go to the bathroom.  Of course it is in the very far back of the restaurant and so he starts making his way there an inch at a time with his walker.  I know this is not going to work and he is not going to make it.  So I leave him moving at a snails pace toward the bathroom and go out to the truck where I retrieve the bag of extra clothes and his wheelchair that he should have been using.

Soon I find myself in the men’s room at Outback, on my hands and knees in the men’s handicapped stall helping him get his wet jeans, underwear and socks off.  Helping him clean up and get clean underwear, socks and sweatpants on.  While I am on my hands and knees in the bathroom stall someone else comes in.   Once upon a time in another life I may have been a bit of a wild girl for a year or two, but this was definitely a first for me.

Even my husband had to laugh as I said “when you picture me on my knees in the men’s room I bet this was not what you had in mind…”

At least we can still find humor in this messed up life.

 
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Posted by on October 1, 2014 in Daily Living

 

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Striking a balance

These days I am feeling more like his mother than his wife.  I have to tell him to eat, serve him every meal.  I have to do 2–3 loads of laundry daily.  I have to remind him to use his walker, over and over and over.  I have to help him shower and dress.  I have to put my foot down when he is being ridiculously stubborn.  I feel like I am chastising too much and yet these things are essential to his health and well being.

I am trying to find the balance, to speak kindly, to keep him in the loop on all that is going on with the doctors and appointments and assistance that I am requesting.  I try to carry on like it is a discussion even though he cannot keep up his end and I know he won’t remember.  I try to make him feel part of the decisions.  I try to remember to be his wife and not his mother.

It is very hard sometimes.

 
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Posted by on September 30, 2014 in Cognitive Loss, Daily Living

 

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Status Quo

The status quo has changed around here for sure.  The latest attack that my husband has had really altered his personality.  He is pleasant, laughs at everything (lability) and has not been getting angry at anything.  This is very much out of the normal for him as he tends to be pessimistic and angry a lot.

He also can’t really walk very well, the stubborn part has not left him and he refuses to use the walker 90% of the time.  This means that he frequently falls. Thankfully he has not hurt himself with these falls.  YET.

He is not able to drive.  I made that decision due to his slow reaction times and the number of things he hit and people he nearly ran over the last few times out with his power chair.  His truck keys are very well hidden and I am firm on this.  After a visit with his neurologist on Tuesday the doctor agreed that hiding the keys seemed like a wise choice.  He asks for them occasionally and I have to say no.

He is midway through his second course of steroids, first one was 2 weeks ago.  Only moderate improvement after the first course of steroids, hoping for a bit more dramatic improvement this course, but of course only time will tell.

His neurologist put in a non-formulary request to start my husband on Tecfidera a new oral med for MS, he said that usually takes about a week, so sometime in the next week he should receive his initial supply and we get to try another MS drug.  Hoping for the best here.

In the meantime I continue to work 3-4 evenings a week for 5 hours at a time.  For the first 2 weeks following this attack I had arranged for people to sit with him, to make him dinner to make sure he doesn’t fall and get hurt.  But the available people have dwindled and we did a few trials with him staying home alone.  He was fine.  I made him keep his cell nearby and he was on strict orders to reply to any text messages I sent or I would start calling and then I would come home if still no reply.

So still praying that this is not the new normal but also not really hating how easy going and agreeable he has become.

 

 
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Posted by on September 26, 2014 in Cognitive Loss, Daily Living

 

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Falling out of love…

Some of the search results that bring people here are interesting but this one caught my eye today:

“my wife has secondary progressive ms and i have fell out of love with her but i do love her”

 

I personally don’t believe that love is a place you “fall” into or out of.  Love is a choice.  Love is work.  Love is hard.  Love can be very rewarding.  If I did not make the choice to love each day I could easily claim to “fall out of love” with my husband.  I know many people don’t see marriage the same way I do.  Many people walk away when the going gets tough.  Til death do us part has no meaning to the masses.

I was raised different.  Love is not some place that you fall but something that you do.

“Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.”  I Corinthians 13.

 
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Posted by on September 21, 2014 in Purpose

 

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What dementia means to me…

Many moons ago when I was much more naive and innocent I thought the word dementia was reserved for very, very old people, with Alzheimers. I never thought it would affect my life in any way.  I thought dementia had to do with memory loss and aging.  Again I had no clue.

“Dementia is a loss of brain function that occurs with certain diseases. It affects memory, thinking, language, judgment, and behavior.”

Memory – yes my husbands short term memory is shot, he can tell you in great detail things that happened 20 years ago but if you ask him what he ate for lunch today he may not be able to remember.

Thinking – wow is this ever an issue, his thinking is really messed up.  A man who used to be so logical it made my creative mind hurt has no logic left in him at all.  For example he thinks it is perfectly logical to drive 100 miles round trip to save $5 on something that we could buy locally.  It’s cheaper in the city so it makes perfect sense to drive 100 miles with gas at $3.59 a gallon to save $5 to him.   I have more sinister examples but perhaps another day for those.

Language – he can’t think of words, his vocabulary is shrinking, the words he does use are more crude at times, he struggles to spit out his thoughts.

Judgement – let’s just say he has none – tell a dirty joke in front of your sister’s 7 year old daughter?  Sure why not?  Tell same dirty joke to mother-in-law’s church lady friends?  Yep again why not?  Carry on illicit conversations with ex girlfriends on facebook where in you tell blatant lies about yourself and your wife?  Again his judgement tells him that this is a-okay.

Behavior – to me this all goes together with judgement.  If you have no judgement and can’t think clearly or logically than your behavior is bound to be deplorable.  And his is at times.

So how do I cope – well some days not very well.  My husband is 47, I am 44!  Dammit I’m not supposed to be dealing with this for another 40 years at least.  But here we are.  My family treats him as they would anyone with a mental disability or mental illness – to say they don’t call him out for most of his behaviors or words, but also do take anything he says or does seriously.  I have a harder time with it, especially with people who may not know about his disability.  The physical disability is obvious but the mental part is not so obvious and many people may think he is just a jerk when he starts in, or sometimes he is terribly charming and they find him endearing but often he does or says something that ends this.

I used to cut in and try and stop him but that just angers him and then he yells at me calling me horrible names at times and in front of friends, family, strangers, anyone really it is just mortifying.  So mostly I let him go and if these are people I will have to interact with again I be sure to privately fill them in.

Dementia…. it’s not just for great grandparents anymore.

 
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Posted by on August 18, 2014 in Daily Living

 

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One of the posts that started it all…

This was the post that inspired the name of this blog, six years ago – so much has changed since then but here is a bit of history.

WEDNESDAY, AUGUST 20, 2008
Married to the MonSter…
Lisa of Brass & Ivory asked me to talk about being the spouse of someone with MS and what it means for my life.

When I met my husband in December of 1997 he was already diagnosed with MS – had been on Avonex for 7 months and had recovered from his first diagnosed MS attack which was a doozy that hospitalized him for about a week. He was handsome, had a runners body still, muscular thighs and six pack abs. I was intimidated by how “in shape” he seemed.

I knew about MS – a close friend of the family had a severe fast progressing case and she went from being fine to being in a wheelchair and then finally to being unable to breathe on her own within a decade. It was pretty scary stuff. I also knew a friend’s mom who sometimes walked with a limp when over tired but was fine most of the time. This was the extent of my knowledge about MS when I met him.

There were those who warned me about getting involved with someone with MS. My family was concerned. Friends worried that I was setting myself up for heartbreak and maybe I was but I fell in love and I took the risk.

My husband has R/R(relapsing remitting) MS – he has had a lot of relapses in the last decade but many times his symptoms would reverse themselves after a course of steroids. So the day he woke up unable to control his left leg at all and had to use a walker just to get around? Well 3 weeks later he was walking like nothing ever happened. For us MS was a day to day reality in his energy level but the real serious stuff was usually a passing inconvenience.

The MS was sometimes at the forefront and a very real reason why he could not do something or go somewhere, but many times it was an excuse too. I don’t want to go I have a headache. No way to prove or disprove that, I take him at his word. Sometimes he would go out in crazy heat to do things he wanted to do knowing it would drain him and other times he’d beg off due to heat when it really wasn’t hot because he just doesn’t want to. I find that MS makes a nice tidy excuse to get out of things and yet I never want to accuse him of that because what if this time I’m wrong?

I have never known my marriage without MS as I said above but I did know it before MS was there in our faces daily changing everything. I miss the times when the MS was something that boiled up occasionally and then went back to a slow simmer. About 2 years ago this labor day he had the start of an exacerbation – he had the steroids to halt it but this time they didn’t work. He had been on Betaserone for nearly 4 years at this point but it no longer seemed to be helping. He was not seeing a specialist and his general neurologist was way out of his element here. But he didn’t admit defeat and send hubby to a specialist, he kept puttering around talking about new possible therapies but not doing anything about it. Finally after almost a year of indecision and inaction on his neurologists part my husband was fed up and asked his primary care physician for a referral back to a specialist. This doctor immediately started the process to get him on Tysabri and took him off Betaserone. He sent him to a physiotherapist to try and regain some of the lost function but it seems that it’s gone for good.

My handsome husband with the runner’s build has lost about 25lbs of muscle over the last decade. His thighs are thin and much weaker, his abs are no longer rippling. He has a drop foot on the left, no balance at all, and a seriously unbalanced and uneven gait. He can only walk a few minutes at a time before he needs to rest and he staggers as he goes. I admire his resolve to not give up and sit down in a chair and just let it go. I also wonder at times WHY he fights so hard – use a chair sometimes it is just to save your strength. But he is a stubborn Italian man and give up is not in his vocabulary.

He has been on Tysabri for 8 months now. His doctor says he is showing improvement in involuntary reactions. I wish he would show improvements in balance and walking ability. He doesn’t feel like he’s getting better. I do think his memory loss is better. For awhile he couldn’t remember from day to day things that happened or people said. And he wouldn’t admit it was him instead accusing the other person of not having told him. This rarely happens these days – if that is the Tysabri I do thank it for that much at least.

I feel like an outsider sometimes. I know more about the disease and treatment than he does because I take the time to educate myself. But no matter how much I know the one thing I can never know is what it feels like, or how it makes him feel. I know how it makes me feel – scared, helpless, alone – and I don’t have the disease.

I love my husband and I HATE what this disease has taken from him and by proxy from me. He is still R/R and there is still a chance he could turn around and start getting better but I fear that the best we can hope from the Tysabri is to stop the disease from taking any more. Because it has already taken so much it just doesn’t seem like enough. I worry that he will cross over and become secondary progressive, if this happens there is no approved treatment and the insurance would no longer pay for Tysabri. At that point it becomes a wait and see game as in “wait until he dies” basically.

For the overwhelming majority of people with MS it is not a life threatening disease. I worry all the time that the man I married is not in the majority. I keep that worry to myself.

 
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Posted by on August 9, 2014 in History

 

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In the beginning…

I was clueless.

My husband was diagnosed with MS 6 months before we met.  He told me about it before we even went on our first date.  I thought I knew what I was in for.  I had several friends who had parents with MS and thought I knew what the disease might entail.  MS was a physical disease, it affected muscle control and made someone tire more easily.  I could handle that.  No problem.  By the time I realized just how much MORE MS could be I was emotionally invested and not getting out without major pain. I still had no idea of the cognitive impairment possible or the severity until 7 years into my marriage when my world just fell apart at the seams.

Since 2007 I have delved into a world of confusion, lies, deceit, dementia, impulsivity, disinhibition, lability, depression, anxiety, occasional violent behaviors.  Let me tell you had someone given me a preview of coming attractions when my future husband mentioned he had MS I may have skipped that first date and have had a whole different life.

But there is a reason we don’t know our future, most of us would run screaming for the door.  And given my upbringing, and my personal belief system I will not run screaming now.  I’m in this for the duration, “til death do us part” if you will.

What I hope to do with this blog is be honest, what life can be like when living with someone with MS who is on the entire other end of the spectrum from those I knew 17 years ago when I decided it was okay to date someone with MS.  I don’t want to scare people away from potentially wonderful relationships, but I do wish I’d known all the possibilities back then, perhaps being 27 and optimistic I may have taken the same chance and knowing myself I probably would have.

In the beginning I was naive.

 
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Posted by on August 8, 2014 in History

 

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Introducing…

I have had a blog for about 7 years, in the beginning I posted a lot, it was random and silly and mixed in with many posts about having a husband with MS.  It was an outlet for me, sometimes I whined, other times I really spoke from the heart.

I intend for this blog to be much more focused.  My topics will be MS (multiple sclerosis) and the many ways it can affect a life such as physical disability, cognitive dysfunction, dementia, lots of fun topics all told from my personal perspective.  As well I may touch on veterans issues as my husband is service connected and covered by the Veterans Administration. The ongoing struggle for benefits from the VA will be a fun topic to tackle.  I will also bring forward some of my past posts that are relevant.

So if you are reading this, thank you.  I hope to help other spouses of MS patients as well as spouses of disabled veterans who may be seeking benefits, and hopefully anyone who has ever had to take care of or advocate for someone who they loved who could not do it themselves will find something here.

Hang on it’s bound to be a wild ride.

 
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Posted by on August 7, 2014 in Purpose

 

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