Tag Archives: Multiple Sclerosis

Thankful for Feeling Sad

Posted on by
Reply

I stayed up very late last night making cake balls to take to Husband’s family’s Thanksgiving. So I am tired today and my head is not working properly. I can make the cake balls portion but it is the bark melted covering on the outside where I have issues making them look presentable and not a disaster.

Then Sister K called since she is home and we all used “Face Time” on the iPhone to late night chat. So one thing led to another and it was midnight before I went to sleep.

Being married is tough for me around the holidays because we have to split time between my family and Husband’s family. So far we have just been alternating Thanksgiving with his family, Christmas with mine, then switch the next year and so on….so this year it’s Thanksgiving with his family and Christmas with mine. But it doesn’t change this tiny feeling inside of me as I head off to celebrate a holiday without my family- I miss them. To put it even more simply- I miss my Mom. Mom has always had a way of making the holidays special. They have always been low-key occasions but special at the same time. A very come one, come all..you are not a guest in our home, you are automatic family. It’s hard to imagine everyone eating Thanksgiving without me. Sitting around our kitchen table in that green ivy filled kitchen. Getting recipes together, making drinks, snacking on appetizers, all of it.

I know these are simple memories. Our holidays have changed some in part because of Mom’s MS. We don’t make all of the food anymore but order some of it from a local restaurant. We have done this to make things easier…to make things less stressful on Mom and that is fine by us. We are easy to please. But the point though is even in its imperfect state, the holidays at home with my family are perfect to me. And today I have a tiny twinge of sadness that I am trying to mask with a smile on my face. But I am thankful for that sadness. Thankful I love my family enough to miss them at the holidays and thankful for the blessing of them this Thanksgiving.

What are your plans for Thanksgiving? How do you divide your time between families? Do you do all your own cooking or buy anything pre-made? So thankful for my readers! Wishing you a wonderful Thanksgiving!

My Twinkie Filled Childhood

Posted on by
3

You have probably heard that the Twinkie is in trouble since the company that creates them is filing for bankruptcy. Thinking of Twinkie’s made me nostalgic thinking of my childhood. Thinking of Mom buying Twinkie’s for Sister K and me, as well as those cream-filled chocolate cupcakes with the white wirl on top. Nostalgia.

It seems hard these days to reminisce about the past when I look at where we are now. Finding the balance in my head adjusting to Mom from childhood and Mom now. How she has changed. How our roles have changed. I know growing up can be painful but I guess I never expected to be dealing with a Mom with MS in the midst of it. It goes back to my struggle with expectations. Setting expectations and the disappointment when the expectations don’t come to fruition.

But here I am in the present. Looking at an image of a Twinkie and thinking about my childhood house. Thinking about my childhood in general- a Barbie house in the dining room, a Fisher Price kitchen set in the kitchen, constant dance performances in the living room and never ending afternoons spent in dress-up clothes. My memories are magical. They are free of stress. They are blissful. They are the polar opposite of life today. But in many ways, maybe that is the way it was supposed to be. Maybe those care free afternoons at home were teaching Sister K and me valuable lessons in becoming good people- the kind of people who would one day help their Mom deal with MS. The kind of people who wouldn’t walk away from their Mom in the midst of distress but instead would run to her no matter how difficult it was at times.

Thank you Twinkie’s for being part of my childhood and part of my memories. Thank you for playing a part oh the journey that prepared me to be the person I am today.

Do you have any childhood snack treats you fondly remember? Do you find it painful to grow up sometimes? Are you a fan of Twinkie’s? Husband informed me he was more of a “Little Debbie guy.” I was shocked.

A Little Thing

Posted on by
Reply

Every week Dad buys Mom a bouquet of flowers. Flowers are a little thing. A little thing, a small gesture but it brings a big smile.

Mom doesn’t leave the house a lot. She can’t unless one of us is going with her. She has been forced, not by her choosing, to give up a lot of her freedom. I need to remember to think about what that must be like. Losing the freedom to just get in the car and drive somewhere. Run a simple errand. Go to the post office. She can’t do any of it anymore. Dad realizes this. He realizes her house has now become her safety blanket. Her house is now her world. He knows he can’t do much to change this but the one small thing he can do is buy Mom flowers. Flowers to brighten her day. Flowers to brighten her kitchen. They are a little thing that makes a big difference.

What kind of little things do you do that may mean a lot to someone? Do you enjoy having fresh flowers in your house? What is your favorite flower?

Stop Staring.

Posted on by
Reply

People apparently like to stare. I don’t know why. I don’t know what inside of a person makes them want to stare but they do. They tend to stare specifically at my family and how we move Mom around. I would love to say this doesn’t bother me but it does. It especially bothers me more when it is happening at a family gathering or a party with friends. Why do people stare?

As a child I can remember distinctly Mom telling Sister K and me the phrase “Don’t stare.” She would say this when we would see someone who might have some sort of disability or may be different from us. She would say this because as children our instinct is to stare. It was one of what I would call Mom’s cardinal rules. I figured everyone knew this rule. Naively I especially figured adults knew this rule, but I am finding out they don’t.

We were at a family birthday party this past summer and everyone was lining up for a family picture. We were the last to get situated. The rest of our extended family seemed to move rather quickly to get in place. Then they just stood there and stared as Mom moved slowly with her walker and we followed around across the living room floor. Later that night when we had said good-bye in front of the house they just stood there again. Stood there and stared as Mom walked slowly to the car. Stared as we got her into the car. They didn’t speak. They just stared.

Similar things happen at parties we go to. There is a lot to maneuver and manage quickly without trying to draw attention to us. All while keeping a calm happy look on our face. It’s tough. We wait for the right moment when no one seems to be looking, then we move Mom from her wheelchair to a chair at the table. We shift her legs. Sometimes we literally move them. Sometimes we literally have to bend them. We help her stand. We help her balance. Then we do it again at the end. Even if she stays in her wheelchair there is always getting her into the car. The bottom line is there is always something. At the same time there seems to always be someone staring.

A word to society: Stop staring. As a family we are under enough internal stress in these situations ourselves and it would be helpful if you would just leave us alone and continue on as if nothing different is happening. Continue on in whatever else is happening and stop staring at us. How would you feel if you were in our shoes and we were staring at you? I am curious what people would say if I asked them that question. Maybe I should start.

Do you have any experience with people staring in difficult situations? Do you think there is a reason people do this? Were you ever taught not to stare? Do you think I could just be more sensitive to this and need to get over it?

Is It a Relapse or Just MS?

Posted on by
2

MS confuses me. I am no expert on it and the more I try to learn about it the more questions I have than answers. The other issue is Mom doesn’t take much initiative to learn about it herself so that’s tough since it involves her. I think Mom prefers to avoid dealing with it whether than learning about it…leaving the messy decision making and responsibilities part of this up to us. It’s just how this works. It’s how Mom works.

This past weekend I was home to visit Mom and Dad. The past few times I have seen Mom I have noticed she seems to be having more trouble than usual with walking. She is having issues bending her legs when she sits in the car. She is having trouble picking her legs up at times and we lift them for her. This past weekend she fell while we were at Grandpa’s house. It was a scary moment because she physically does not have the strength to get herself up off the ground or to push herself up. So there I was with Dad trying to get her up but again you are lifting dead weight which makes it more difficult. Dad told me she fell again last night walking to the bedroom.

There is definite cause for concern but I can’t determine how much. I don’t understand MS relapses. Mom has only had one and it occurred this past June. But in the weeks leading up to it we did not know it was a relapse that was occurring but thought it was a number of other issues to include a broken hip and herniated disc. It ended up being a relapse and we realized it once she was in the hospital because she had lost the ability to move both of her legs. We didn’t know what was causing this. The hospital determined it was a relapse.

This time seeing what is occurring I am wondering if we are entering the beginning stages of another relapse or if this is unfortunately the progression MS takes for certain individuals.

How do you know the difference? At what point should you be concerned and at what point should you begin to accept this is sadly the progression of MS? Any advice or thoughts you may have would be appreciated. Dad has called Mom’s doctor and is waiting for a callback to determine if she should move up her appointment to this week. But I also realize that sometimes the greatest things I have learned have been from other people I have met in the blogging world going through their own situations.

A Shower of Nerves

Posted on by
2

It’s Friday and it’s a Friday where I am heading home to my parents house to visit for the weekend. Mom and I have a baby shower to attend tomorrow for a childhood friend of mine. It will be a solo event for us. Sister K is not coming into town and Dad doesn’t attend too many baby showers…

But I am a little nervous and I am not sure why. It is always strange to go to things like showers with Mom and see people from the past. They know Mom has MS but it’s still hard. I was figuring out what to wear and was even taking into consideration wearing heels vs flats since I would be pushing a wheelchair. I am going to be solo responsible for Mom and I am a little anxious about it.  Just the dynamics. Getting her into the restaurant, where we will sit, will people stare at us, how will this work, etc. Mobility is not as easy as it used to be for her making these things a little more complicated for us. I am sure it will all be fine, just like it always is; there will even be minor hiccups in the process but they will be fine too.

Today though, I can’t predict what will happen or how this will play out. This is a part of Mom’s MS I struggle with a lot. I struggle with my desire for the simplicity of how things used to be or how things are in comparison to other friends of mine attending showers with their Moms. I also get a little more nervous when I have to do these things on my own compared to doing them with Sister K and getting to “tag team” the situation.

So there it is. Here comes the weekend. I can see it on the horizon. Hope you have a great one! Thanks for sticking with me as I do my best to create my own manual for dealing with Mom’s MS.

Do you think I am thinking too much about the weekend ahead and need to try to just go with these things as they come? How do people react to you when your circumstances change from how they used to be? What do you have planned this weekend?

The Changing Faces of Shopping

Posted on by
Reply

I know it’s a little early to begin talking about Christmas but I think it is acceptable to start talking about Christmas shopping. Specifically in my family, Christmas shopping has definitely evolved.

Mom has always loved Christmas and growing up I would hear her brag to her friends about how her Christmas shopping was done by July. I can envision her driving around in her minivan while we were at school buying things for people as she saw them and then hiding the gifts in the back of her closet. That vision seems like a long time ago. It makes me nostalgic but I find it important to remember those memories.

The point through is now instead of driving around, Mom opens her iPad and shops around all while sitting at the kitchen table. She tells us to email her “links” instead of the traditional handwritten Christmas list. And though the methods of obtaining the gifts may be different, she still feels useful and in charge of Christmas gifts just like she always was. This is important. It’s another way we fight to to continue living as we always have and another way thanks to modern technology Mom can still feel like Mom…especially at Christmas.

How do you holiday shop? Are there little responsibilities in your life like Christmas shopping that would be hard for you to have taken away? Do you prefer internet shopping? Have you started your Christmas shopping yet?

Welcome to the 60s

Posted on by
Reply

Alright I am back. Not that I every left, but over the past month I’ve had a lot going on that had nothing to do with Mom’s MS. In a way Mom having MS took a backseat to everything else going on in my life. Maybe that is good from time to time. Maybe it is necessary to help me to keep things in perspective and continue to live my life. But things are resolved, I am feeling back to normal (after you read this post you may change your opinion of that comment..ha), and I am ready to share my words regularly once again.

Oct. 25 was Mom’s 60th Birthday. I posted about our plans for her birthday here. What I didn’t post about was the performance that Sister K and I conducted for her when we got home after her family birthday dinner. We ran upstairs in our house and raided our childhood bedrooms trying to find and piece together old dance recital costumes that may somewhat fit in one way or another. We were going for poodle skirts. We only found one poodle skirt and sequin jacket. Sister K took that outfit. Just as we felt we were about to fail at our mission we discovered the ultimate in past costumes:

My California Raisin Halloween costume circa 1992

Let’s just say it was amazing. Sister K and I put on the song “Welcome to the 60s” from the musical turned movie Hairspray and began just randomly dancing and serenading Mom in the kitchen. The dogs were barking at me the entire time. Mom and Grandpa sat at the kitchen table watching. Dad on a bar stool wondering where exactly he went wrong with raising us and Husband rolled his eyes continuously because nothing surprises him anymore.

But the point of all this- the costumes, the music, the dancing- this is how we survive. This is how we cope with MS. We remember to not take life seriously. We realize the importance of laughter. And we have no shame and will do whatever is necessary to bring a laugh and a smile to our family, especially Mom. We will do whatever we can to distract our family from the dark place we can easily find ourselves in because of MS.

Have you ever done something silly to get a laugh out of an otherwise tough situation? Do you think it’s important to not take life too seriously sometimes as a way to cope? Were you a fan of the California Raisins? Did you hear that I got an iPhone Friday night? Lots of tweets and more pictures to come now that I have officially entered the real world. Be on the lookout.

“It Bothers Me”

Posted on by
Reply

To start I have to say if you have been impacted by Hurricane Sandy in any way please know you are in my thoughts and prayers. I have been following the pictures of the devastation and flooding on twitter today and words can’t describe it. It is truly unimaginable. 

Weather is interesting in that regard. The storms of the weather and the storms of our personal lives. I think I could describe my family’s relationship with MS in that way. We go from blue skies to a turbulent thunderstorm in a split second. As I mentioned, Friday evening we were going to celebrate Mom’s 60th birthday with a nice family dinner. After Husband, Sister K and I arrived home we quickly changed clothes and got ready to leave. Husband left separately to go pick up Grandpa and meet us at the restaurant. Everything seemed to be going smoothly, until the rest of us needed to get in the car.

Getting Mom into the car has become a very stressful exercise. I think Dad is more used to it because he is around it all the time and deals with it everyday, but to be honest it unnerves me. I have to shut my mind down and exit the situation. Not allow myself to think about what is actually happening: Mom holding on to the car and struggling to angle herself the correct direction to sit down. Mom plopping/falling/finding a way to seat herself in the front seat of our family Camry. Then comes the real challenge of getting Mom’s legs into the car. Dad is bent over grunting as he lifts Mom’s legs and tries to swing them into the car. Mom yelling at him at certain points because it hurts, he is doing it wrong, etc. Dad getting frustrated. Mom getting frustrated. Feelings of distress and irritation at the situation. Then they have to do the other leg. Sister K stood by frustrated because she believes Mom isn’t trying to assist Dad and could do more. I just zoned out. Then it’s over and we move on as if nothing has happened.

But it did happen. I watched the entire thing play out. I could try to assist but sometimes it almost makes it more difficult. Mom gets more frustrated. We don’t know the “routine” involved. So we wait and let them do it. Then we move on until the next time. And then the same thing happens again.

I don’t really know what to think about all of this. I know families have their own routines of dealing with various things like this. Mom and Dad seem to have theirs figured out. But the fact that Mom’s ability to get in/out of the car doesn’t seem to be improving bothers me. It bothers me that my parents aren’t taking the SUV they were so proud to drive. It bothers me that these struggles extend beyond the car. It bothers me to watch Mom really struggle walking around the house, having issues picking up her foot just to take a step. Basically I feel like none of this is getting better because in all honesty, I don’t believe it is. To other people I give my canned fake answer that Mom is improving, doing physical therapy, she’s doing great. I say it all with a smile. But here, I can tell the truth and the truth is I don’t believe it’s getting better. I honestly think it may be getting worse. And it bothers me..for so many reasons I can’t put into words…and at the same time can’t figure out how to handle all of this. Because Saturday evening after dinner I got frustrated watching Mom walk around the living room and had to go upstairs. I had to leave the room. It appears my current way of dealing with this is mentally or physically escaping. I know that is wrong, but I don’t know what is right.

Do you think there is a better thought process I should have in these situations? Do you ever struggle to put into words things that bother you? Do you think it’s tough to admit that sometimes people aren’t getting better? Have you been impacted by Hurricane Sandy?

The Reality of Birthdays

Posted on by
6

Today is Mom’s 60th birthday. She kept saying leading up to her birthday this year that she wasn’t looking forward to it. She didn’t want to turn 60. But now here we are, ready or not it came and ready or not it’s happening. Sister K, Husband and I will be heading home tomorrow evening to celebrate with a family dinner.

We have had a lot of debate in our house over Mom’s birthday this year and the possibility of throwing her a party. Because 60 is one of those birthdays. It’s a big one and with big birthdays people sometimes have parties. We went back and forth over it and ultimately decided the timing wasn’t there for it. This is for a lot of reasons, most of which have to do with MS. Parties can be stressful and stress seems to flare up Mom’s MS. The two go hand in hand. As well, a lot of people haven’t seen Mom since her relapse and it would be stressful on her to know she was going to be seeing a lot of people for the first time. You also need to be on time to parties, primarily when they are your own. In case you are just tuning into this blog, my family is never on time for anything anymore. And on top of everything else but a very selfish reason- recently Sister K and I haven’t enjoyed seeing a lot of Mom’s friends.  Because when we see them we get asked a lot of questions about Mom and to put it bluntly we are just “over it.”

But I think this was one of those instances where we really did something in the best interest of Mom’s MS and really thought through the scenarios. I have to believe in the past we would’ve pushed ourselves to act as we always would have- succumbed to the pressure placed on us to throw a party and celebrate. Pressure placed on us by strange invisible voices, based on nothing in particular other than ourselves. So for the first time, we ignored the voices and blocked them out. We realized those ideas and plans don’t align with where we are at in our family. Mom never really made a decision one way or the other so in many ways we made it for her.

So instead we are going to go home and have a birthday dinner with just our family. Go out to a nice restaurant- probably be running 30 minutes late by the time we get out the door and it won’t matter one bit because it will just be us. Relaxed, carefree and celebrating Mom. To me it sounds like a perfect birthday considering where we are all at and a perfect way to honor Mom this year on her special day.

Happy 60th Birthday Mom!

Do you throw birthday parties for big birthday occasions? Do you ever feel pressure to celebrate and throw a birthday party for yourself or others? Would you consider this letting MS controlling our lives or being realistic with the MS in our lives? Do you think we made the right decision?