Tag Archives: my mom has ms

It’s a Corner Built for Two

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All I want to do today is crawl into a corner.  That’s what sister K texted me this morning as I was getting ready for work.

I responded: Can I be in the corner too? 

She texted: Of course. It’s a corner built for two.

This weekend has been traumatic. I am still processing it. I realize to a lot of people what I write may not sound traumatic but to me this was a really big step in the wrong direction with Mom’s MS. It was a scary step. In some ways I feel like I had figured out how to deal with Mom’s MS. I had it in a nice box, tucked away and I was learning to deal with it and manage it. Then this weekend happened. I feel the like the box lid is off and there are things just pouring out. Faster than I can process them. Faster than I can think about them.

Mom had been having trouble last week with shooting pain in her leg. By Friday she had been diagnosed with what we thought was a herniated disc. Saturday and Sunday though she was just growing progressively worse.  No longer in pain because she was on such strong pain medications, but on Saturday she had lost the use of her left leg.  We thought this was related to the herniated disc. But then on Sunday she lost the use of her right leg. Dad started making decisions. Fast ones. Phone calls. Initially he pulled me aside to tell me he was thinking Mom may need to move into a rehabilitation center temporarily because someone needs to be working with her legs. He said given that he had pratically been up all night Saturday (in addition to the other nights prior with little sleep), he couldn’t continue to provide the level of care she needed right now. This was becoming an issue of quality of life for her. I watched as Mom just sat in her wheelchair sleeping with her head slunched over. It was sad. The only word I can use to describe it. Sad.

I always said I would be strong. I could be strong. He told me this and I started crying. This all of a sudden was becoming real. Facing the reality of what was going on. He then made a few more phone calls. Her doctor was concerned because she had lost the use of her right leg. That may be the MS and unrelated to the disc. Her body may be having an MS flare up. He wanted the MRI done asap.

While all this was going on Sister K was driving home. I was updating her on the phone. We were both scared, shocked, and leaning on each other. I needed her there. I didn’t realize how much I needed her there until she walked in the door. She got it. Without saying a word but just giving me a hug she understood everything I was feeling.

Dad called an ambulance company who came to get Mom. No sirens, no flashing lights but she needed to be taken in on a stretcher. She was essentially paralyzed. Dad told me to come back here. Sister K would stay. He said there was literally nothing I could do at this point. As annoying as it was, he was right. 

The MRI revealed Mom doesn’t have a herniated disc. Everything was normal. Sister K texted me the update this morning. The doctors didn’t read the MRI until about 1am. This wasn’t good. This was all MS. I tried to fight the tears and the panic. This is when Sister K decided she wanted to move to a corner.  And I wanted to go too.

Later this morning Dad called. He said Mom is having an MS flare up and they have started her on a steroid IV. He said she has to stay in the hospital 72 hours and then they are likely going to transport her to a rehabilitation facility. Luckily it is one that is affiliated with the one she goes to. She will see familiar faces. Maybe it won’t be so hard.

For now though she is in the hospital. Sister K is with her. I talked to them on speakerphone at lunch. Mom seemed in good spirits. She was cracking jokes. Sister K said every once in awhile she says something wacky or just falls asleep.  That’s where we are now physically.

But mentally. Mentally I am all over the place. I am scared. I couldn’t stop crying yesterday. I was trying to keep my mind in a good place and not let it drift to the world of the “what ifs” and “unknowns.” But it’s hard. I just want Mom back. I want her back mentally. It was so depressing to see the state she was in this weekend. To watch her debilitate like that. It was cruel. I just went through this with my Grandmother who passed away from Alzheimer’s in 2010. But that was different. I don’t know why. But then again I do. That was my Grandmother.  This is my Mom. It’s just a lot. I am even getting teary eyed writing this. It’s hard. And it’s sad.

I want to thank you for walking this journey with me. I had many thoughts yesterday that I knew somehow I wasn’t alone. I had those thoughts because of this blog. So thank you for being in the back of mind as my support team.

The Teeter-Totter of Life

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A herniated disc.  We think we might finally know what is wrong with Mom.  I wish this potential diagnosis had come about easily but no. Nothing can ever be simple. Mom was up most of the night in pain again which means Dad was up most of the night. This morning they called a family friend of ours who is a doctor, who got them in to see a doctor he knows at a pain management clinic. He squeezed Mom in to see to him today and ordered an MRI for her to have done on Monday. But by feeling her back the Doctor said I think you have a herniated disc. 

Feelings of being thankful we may finally know what is wrong and anger rushed through me at once. What has the other doctor been doing all week ordering these ct scans and just putting her on pain medicine? What is going on?

This is where this gets tricky. My mom has MS. But how I take care of her is different than how I would take care of her if she was say 88 with this disease. I am not the one that is going to pick up the phone and call a doctor to demand some answers. My parents are still fully in control of Mom’s health.  Therefore Sister K and I play a tricky role.  We aren’t in charge of Mom’s care but we are old enough to understand what is going on and to demand better. But at the same time we can’t. We have to stand by and wait for these decisions to be made by Mom and Dad. Sometimes they make them together. Sometimes they wait for Mom to make the final decision. It’s tricky. It’s tough. It makes this world of having a Mom with MS tricky and tough.

Right now we stand by. We offer advice. We provide pressure when we think it needs to be there if we don’t agree with decisions. But beyond that, the actual decision isn’t either Sister K’s nor mine to make. We are still trying to find our role in this portion of handling Mom’s MS. Realizing our parents do need our help but there is also a level to that support we can provide due to the nature of our responsibility in our family’s lives. Our parents are still at an age and state of health where these decisions are theirs to make. But we want to be involved. It reminds me of a teeter-totter. Sister K and I go back and forth. We have discussions together in one regard. Then we have to yield to our parents and their decisions and what they believe is the sense of urgency in another regard. We’re still trying to balance it and we haven’t come close to mastering it. New things come up. New health challenges. And new ways we feel we need to be involved in this. So we teeter-totter some more. 

One way I know I can help is deciding to go home this weekend to help Mom and Dad out again. Sister K is coming down Sunday and will stay in town until Wednesday. Tomorrow I will take my Grandpa (Mom’s Dad) to a family reunion my parents were supposed to take him to but for obvious reasons can’t go. How hard of a time will I give Sister K because I am the chosen volunteer to attend the family reunion?  Let’s just say she will be “on call” over text messages all day Saturday while I eat my $10/person bbq plate and hang out with Grandpa…. 

Do you ever feel like you walk a fine line when dealing with your parents’ health? Have you ever been really mad at a doctor because you could’ve diagnosed a symptom yourself sans medical degree? Do you like bbq?

~Thank you for reading this week and for coming back and continuing to read. It means more to me than you know. Hope you a wonderful weekend of laughter (and maybe some bbq in honor of me if that is an option where you live)!

The Power of a Smile

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She handed me an iced tea.  I went through the drive-thru at McDonald’s and she handed me my large iced tea for $1.08.  My everyday addiction. But what she didn’t know was that I was on the phone with Mom who was on the verge of tears.  She is still having this shooting pain from her hip down her leg and the second ct scan, this time of her leg, came back showing no issues either.  Mom was on the verge of tears.  I was beginning to feel the panic I feel as I know Mom is about to start crying because she is overwhelmed. Frustrated. Upset that they can’t figure out what is wrong.  And the woman at the drive-thru handed me my iced tea with the nicest smile on her face and said, “Here you go have a nice day.”  And in looking at her smile I snapped back into reality and calmed down. 

I immediately started talking to Mom in an upbeat voice that said this is going to be figured out.  Maybe it is a nerve in your back.  They were thinking that was a possibility. She was about to call and ask about a ct scan of her back.  She sounded calmer. She said she feels like she’s just lost 2 weeks of her life because of this. I laughed and said well we would all like to lose 2 weeks sometimes.  I got calmer yet became more upbeat.  And soon enough she became upbeat again and we drifted on to other topics. 

I don’t know how I did that. I am sitting here still unsure. But what I do know. I owe a thank you to the woman at the drive thru. She could’ve been rude. She could’ve just given me my iced tea and not said a word or looked at me. But she stopped, she looked into my eyes and she smiled. And that smile made the entire world snap back into place.

It made me think how often maybe sometimes someone just needs a smile. Smiles aren’t a cure for anything but they just have a way of getting inside of you.  Sending a burst of positive feelings through you. It’s a good reminder that you never know how you are being used in other people’s lives, especially complete strangers as you encounter them on a daily basis- at the grocery store, at the gas station, even crossing a street.  But next time I see someone and make eye contact I may think harder about giving them a smile.

And if I need a reminder I’ll just think of the line from my favorite movie Elf: “I just like to smile. Smiling’s my favorite.”  

Have you ever struggled with finding the right words to say when your Mom is hurting? Do you ever think about the powerful impact of a smile? Do you like the movie Elf as much as my family does? Any favorite Elf quotes?

30 Minutes of Bliss

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Three way Calling.  It has been around forever. In a world of new inventive ways of communicating over the past 10 years I can say that three way calling was here long before texting and instant messaging. I remember using it in high school and am laughing because 10 years later here I am using it again for different reasons. 

Recently Sister K and I have been spending more time 3 way calling with our family in the evenings. I am obsessed with these 3 way calls. They are hilarious and fun and make me dizzy with laughter the entire time I am on the phone. There is something about them that is thrilling. An adrenaline rush of a phone call.  To know we are all on the phone together. At the same time. But not in the same place. We fill an entire 30 minutes with nonstop talking about nothing at all.  There is laughter, there are interruptions as we talk over one another, there is even Dad randomly popping in when Mom hands him the phone to make us laugh.

Just a few more minutes turns into more and more minutes. These converations are never short and quiet, they are long and loud. Husband actually left the room to go close himself in the bedroom because he couldn’t take much more last night. But these 30 minutes. These 30 minutes leave me absorbed into a happiness high, full of love as I hit the pillow at night.

I may no longer be able to run around the mall with Mom like I used to or go places as easily but we can still talk and we can still laugh.  I have noticed I have talked a lot about laughing recently. I think I am realizing how much laughter is a large part of the foundation of my family. Our inside jokes, our silly moments, these things are part of the roots that hold us together. The laughter has changed over the years. What was once full of Dad swinging his little girls high up in the air upside down is now filled with moments of talking about life in an upside down kind of way. And when our world feels like it is upside down most of the time it is harder to fight it than embrace it.  And how do we embrace it as gracefully as we can? We laugh.  

Have you ever just sat back and laughed at your life? Does your family have silly inside jokes that bond you together? When was the last time you three way called someone?      

A Spring Statement Piece

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The good news, Mom does not have a stress fracture in her hip.  The bad news, the doctor doesn’t know what is causing the pain.  She was given a shot in her muscle which seemed to calm things down but she woke up this morning again in pain.  If the pain does not improve today she is going to go back and receive a lumbar scan to see if this is a nerve. Mom and Dad sounded upbeat though last night. That was a relief to hear. Today though a little less upbeat, a little more unsure. 

To perk up Mom’s spirits, Sister K and I spent the morning like we always do sending her emails.  We forwarded promos we received from stores, comments on The Bachelorette premiere last night, or silly stories we read online. Email is a great way for us to communicate during the day because Mom has an iPad so she is able to be on the computer without having to maneuver and actually sit in our computer room.  She can sit at the kitchen table or even be laying in bed checking emails.   

I knew Mom must have been feeling a little better today when all of a sudden I saw her name appear in my inbox.  Then it appeared again and again as she was replying to the emails sent several hours ago.  One of her responses in particular made me laugh.  Mom used to be an avid All My Children fan.  We laughed that Susan Lucci was her idol. Now that it has been canceled she has been branching out and watching the other new abc shows, The Chew and The Revolution.

So this afternoon she emailed us the following message based on what she had just seen on The Revolution:

the world is a stage,every day you are the actor…work it!
Big things for Spring . . 
Metallics, shine, lace, eyelets, mix patterns,
Colors- pastels and sorbet (this is a watered down pastel shade)
Splurge on the ONE piece that brings energy to you, like a statement necklace, or a bling headband added to a simple outfit
Wedges or espadrilles in bling color
Arm, ear or wrist candy in a neon color added to a simple outfit.(not huge pieces)

Yes. The email is all over the place and practically verbatim from the show but that is the art of Mom on an iPad.  The best part is Sister K and I can speak this fluently and understand everything she is saying. 

But when I asked what her statement piece for Spring would be she replied: “Pinky”

{I am not sure I have explained this yet but Mom has a pink walker.  We don’t call it a walker. I decided a long time ago I wasn’t going to refer to this thing as a walker and no one else would either. So we named it Pinky. And it is called Pinky by everyone, everywhere we go. This is a topic for another day though. Pinky deserves her own post.}

So what is the point of this email with fashion tips for Spring? To show that I am truly from a family of girls.  A family of fashion loving girls. And we have successfully found a way for Mom to continue to show this side of her amidst everything else. To the point where she now refers to her walker, “Pinky” as her statement piece for Spring. 

It makes you think about what the phrase “statement piece” should really mean.  In Mom’s email The Revolution said it is “one piece that brings energy to you.”  Typically you would think it is a necklace or bracelet, but could it be something more?  Could it be a positive attitude? Could it be a smile? Could it be a little more patience?  For me right now it is all 3 of these things.  Mom says her statement piece is Pinky but Pinky symbolizes so much more.  Pinky symbolizes a part of her acceptance of this piece of her life.  Some days this acceptance is easier than others. 

So this Spring I will also be wearing my own statement piece everyday- a more positive attitude about life and most importantly about Mom’s MS.  One of patience, of smiles, of laughter and most importantly love.

Do you already have a Spring statement piece? Have you ever thought of using a statement piece as a means to make a personal change in yourself? Do you think I maybe do need a new necklace/statement piece just because it is Spring?

A Different Kind of Mother’s Day

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It was a different kind of Mother’s Day.  It wasn’t flashy, it wasn’t full of fancy brunches or lots of gifts.  But it was full of love.  A lot of love for the greatest woman in my life. Mom.

As you know, Mom may have a stress fracture in her hip.  Sister K and I were originally planning to surprise Mom by driving home for the day on Mother’s Day.  But because of this new development, I decided to go home Saturday instead.  I thought Dad could use the extra help and Mom could use the perk in her spirits.  There are times when you feel truly needed once you arrive somewhere- this was one of those times. 

Needless to say Mother’s Day in my house was not full of the usual restaurant lunch/brunch of years past.  Mom didn’t even make it out of bed all day.  Sister K did arrive and Mom got her second “daughter surprise” of the weekend.  Sister K is staying home until today since I had to come back last night because of work.

To avoid any specifics out of respect to Mom I will keep things general.  Mom was in a lot of pain and was on some very strong pain medicines that began to make her sick.  Mom is also having a lot of trouble walking.  Going from her bed to the bathroom, to the kitchen, anywhere.  She has trouble getting into bed and once in needs to be adjusted.  To put it simply, there is a lot to be done.  A lot that can be overwhelming for one person.  

But, even through the toughest moments of the weekend we found moments of laughter.  Moments of smiles.  There was the moment I completely forgot to put the brakes on Mom’s wheelchair while she was trying to get out and Dad responded with “Hello Genius!” There were Mom’s funny one-liners making fun of the situations we were in, the things we were having to do.  There were the moments where I layed in bed rubbing her arm trying to soothe her and make the pain go away.  Moments when she was in pure pain and I started telling gossipy stories to try to distract her mind or I told her to pretend she was back in labor and doing lamaze. There was also the fact that while I sat in bed feeding Mom soup, Sister K was rummaging through the bathroom cabinets screaming about mosquito bites she had just gotten outside and how bad they were hurting. As if we weren’t in the middle of a million other things, Sister K knows how to clear the air while directing the attention elsewhere. And it always makes us laugh. 

Finally around 4pm yesterday we all sat down for a moment to eat.  This would’ve normally been the moment where we traditionally celebrated Mother’s Day but yesterday’s Mother’s Day was different.  We had picked up lunch food instead of going out to eat.  Dad, Sister K and I got out the tv trays and all ate our lunch sitting on a bench at the foot of the bed in our parents’ room.  Mom was laying in bed finally resting.  Hello, Dolly! was playing on the tv.  I had put the movie on earlier in the day as an uplifting and fun distraction. I have always loved this musical since I was little and I also know how much Mom loves Barbara Streisand.   

As I sat there watching the end, Sister K on my left, Dad on my right, dogs behind us on the bed and Mom laying down I had a thought.  This is it. This is what Mother’s Day at the heart of it is all about. A day of love and togetherness with family. This Mother’s Day celebration was a simple one but it was also a tough one.  It made me realize how strong my family is, how resilient we are.  It was a Mother’s Day where Mom watched the family she has been the anchor of all these years anchor her.  She watched us use everything she had taught us and put it into action.  She watched the strength she instilled in her daughters come to life.  Amidst the pain and the stress, there were those simple moments of laughter and simple moments of love. 

I don’t usually remember one Mother’s Day to the next, but I have a feeling I will always remember this one.  I will especially remember the way I felt sitting on that bench for the rest of my life.