Author Archives: AG

My MS Recess

Posted on by
2

I have been giving this blog a lot of thought recently. A lot of thought because while I am struggling with Mom’s MS, I am also trying to retain a positive outlook on life. I am trying to cope with the struggles of this disease and the progression of it without allowing the negativity of that to overtake my thoughts.  I feel like in a lot of ways this blog has become a negative place for me recently because that is how I have felt. But at the same time, I need it to also be a positive place. A place I enjoy coming outside of my daily world to lose myself with myself- my experiences, my struggles, my funny moments.

I need it to be my MS Recess. 

I thought about starting a new separate blog but then I realized I needed to just live up to the name I gave this one when I started it..almost like I was foreshadowing how I was going to deal with Mom’s MS..I just didn’t know it. Since recess is often considered a break in the day, this blog needs to be my break in the day. The break where I can vent my frustrations or share some laughs. A place that can be serious or silly. A place where I share more of who I am both as I deal with Mom’s MS but also share more just as I just live my life. Because it is all intertwined whether I like it or not…both portions are part of who I am. How I manage the background feelings that are always there about Mom’s MS while also managing my own life as a 29 year old outside of Mom’s MS.

To try to overcome the negative, I have decided to mix in some “me posts.” Show who I am, show my life but not sugarcoat the moments of struggle. Because I am struggling. A lot. I also recognize I need to find a way to fight it and I think this may be a good trial- to see if this is a good place and a good way to do it.

So on this Sunday evening- here is a glimpse into what is making me smile:

photo-4

This afternoon at the grocery store, I left Husband standing in line as I boldly proclaimed-I need to buy myself some candy corn in honor of the Halloween season. I happen to have quite an affinity for candy corn and every week as I have done my grocery shopping for the past month I have made up an excuse about “why I don’t need it.” Today I finally gave in and bought it- and not only the taste but the nostalgia of it has made me smile all evening long!

Any thoughts on my new approach to this blog? Is there a particular seasonal treat that makes you smile? Candy corn seems to be so polarizing- people either love it or hate it. Which camp do you fall into? Husband is not a fan. 

It’s Back!

Posted on by
Reply

Last Monday marked an important night in our household- the return of Dancing With The Stars! If you have followed my blog you know Mom and I are big fans of the show. This season though felt more special and more fun kicking off. Sister K even agreed to watch it….we’ll see if she sticks to it.

But it felt special because as I am feeling lots of changes with Mom right now, one thing that remains is this TV show however silly that may sound. She loves Dancing With The Stars and so do I. We can talk about the show and recap it together. We have our favorite performers, our favorite pros, our favorite songs to discuss…all of it. It is truly a fun life escape for us together and an experience we can share even though we aren’t physically together. Dancing With The Stars is easy to follow, fun and uplifting…it gives me a guaranteed special moment with Mom every Monday evening and for days to come…and for that I am thankful.

It also isn’t lost on me that Jack Osbourne who has been diagnosed with MS is on the show. He specifically said in his introduction last week that he is doing it to raise awareness for MS. Remarkable. It feels personal too. Every time I watch him I smile thinking of his courage and strength and how he is out there speaking and dancing for Mom.

So here we go again for another season of Dancing With The Stars…are you watching? Who are your favorites? Do you and your family have any shared TV shows you are loyal to watching and discuss after? 

I Need To Talk

Aside

I am having a hard time. There I said it. I am having a hard time. I don’t have a handle on this and feel like instead of getting better at handling Mom’s MS I am getting worse at it. To the outside world I tend to seem like I have it all together. I talk positively, I say all the right things, sure it’s tough, I am dealing with it, I am fine, etc etc.

Inside I am feeling differently.

Inside I am struggling. Inside I feel lonely. Inside I miss my Mom even though she is very much still here. For the past five years since I started working Mom and I have spent the majority of my lunch hours on the phone. Lunchtime chats is what we fondly referred to these conversations. I wandered around outside, talking about my morning, talking about life, just talking and then when my lunch hour was over I went back to work and Mom continued on with her day. These carefree conversations were something I never gave much thought but I could depend on them no matter what kind of day I was having- and in the course of starting new jobs, changing cities, managing challenging situations there were many moments where these conversations were what got me through the day.

But now things are different. Mom isn’t as sharp as she once was and I am not sure if that is the MS, the amount of medicine she is on or a combination of both. But regardless our conversations are not the same. There is a lot of repetition and a lot of simple topics that are not too complex. There are times where I just need some advice but I can’t get Mom to understand the story and in those moments I feel frustrated. There are times I call and Mom may be having a bad day or be in pain and in those moments I feel sad. There are times when we are having the exact same conversation we have already had before and in those moments I feel stressed.

When I get off the phone I am typically not in a better frame of mind than I was before and I need to shut it off and go back to work or go back to life….and that is hard. I feel like I am living a double life in my head- the person who has it all together / the daughter who feels like she has nothing together…and I am having a hard time managing it.

I need to come here and talk about this. I need to continue to talk about this. I have faith I’ll find a way to positively handle this new chapter in my journey with Mom’s MS…and I think a big part will be holding myself accountable about my true feelings here so I can begin to manage them.

How do you manage multiple emotions and situations going on in your life? How do you manage the tough parts while living the good parts? 

 

 

 

Happy Birthday Sister K

Posted on by
Reply

Today is Sister K’s 27th Birthday! I have been thinking a lot all day about Sister K and how she entered my life 27 years ago today. How before you know your sibling you don’t know them at all and after you meet them you can never again imagine your life without them. I think of us 27 years ago with Mom. I have no idea what those early days of a two year old and a baby were like but I imagine they were a combination of emotions. I have also been told that one day when Sister K wouldn’t stop crying I suggested we give her to Goodwill!

I have also been thinking a lot about Sister K because her friendship has become so important to me as we navigate our Mom’s health issues together. Together. Having a sister has become my greatest advantage in all of this and the major way I am able to make it through the tough moments. We both get it. We really get it because we are both experiencing it with the same person- our Mom. We laugh about it together, get sad about it together, and share stories together…but through it all we are handling it together.

On another note…For Sister K’s birthday this year I got her a shirt called The Home T. I thought they were cute because you can buy a shirt to represent the state you are from in a trendy way. But what I didn’t know is that a portion of the proceeds go to MS Research because of their own experience with people they know being impacted by MS. In case you haven’t heard I thought I would pass it along. I can also endorse that it’s a great gift! http://www.thehomet.com/about-us/

Have you ever thought about how thankful you are for a sibling or someone in your life? Do birthdays make you reflect about your family members and your relationships with them? Have you ever heard of the Home T? 

 

Ode to The Hallmark Store

Posted on by
2

It was a rainy-ish afternoon and with not many plans I decided to conquer my usual Sunday grocery shopping on a Saturday. Next door to the grocery store is a Hallmark store and I decided to run inside to grab a card for Sister K whose birthday is on Monday. But while inside I got distracted and ended up with not just a few too many cards I didn’t need, but a nostalgic memory of Mom.

Mom loves Hallmark stores. I have distinct memories of being on summer vacation home for college with Mom and she would drive us to a Hallmark store because she had a $5 off coupon that was going to expire. We didn’t need anything in particular and didn’t have a specific occasion we were shopping for but we would wander around together. Candles…nick nacks…picture frames…funny gifts…you name it and we saw it.

Fast forward to today and Mom doesn’t drive anymore. She doesn’t leave the house too much anymore either. She still gets her Hallmark coupons but life has gotten in the way and they don’t get used like they once did. Dad tries to take Mom when they can make it but that isn’t very often. It also isn’t the same for Mom as this was her place of refuge, her place to kill time, her place to wander around and be Mom.

As I wandered around the store this afternoon I couldn’t help but think what Mom would think of the things inside. How she would stop to look at all the trinkets and treasures besides cards..she would see things she didn’t really need but buy them anyways..she would pick out surprises for Sister K and me..she would wander and shop without a purpose or a plan. The Hallmark store was her place. It still is her place but it is different.

I feel a strange pull towards this store whenever I see it. I have never lived near one and this one is so convenient. But more than being convenient it is like a big hug for me. The women inside are kind. The cards are funny. The knick knacks are cute. It’s like this magical oasis I have discovered inside of the big city I now live inside- and it’s an oasis that reminds me of the way Mom was before MS. So today when the woman asked me if I would like to sign up for a Hallmark Rewards card, I proudly said “Yes. My mom would be so proud to find out I am signing up for one right now.” As I look at my wallet with that little purple rewards card inside I can’t help but smile thinking of these memories of shopping with Mom and Hallmark and that even though life is changing, I am thankful to still have those memories.

Did your family shop at certain stores that will forever remind you of them? Do you have a favorite store that brings you a break from life when you visit it? Have you ever visited a Hallmark store?

Moving Forward..Like It or Not

Posted on by
3

This whole “My Mom has MS thing” is not easy. I know nobody ever said it would be but it is seriously not easy. It’s not easy to think about. It’s not easy to talk about. It’s not easy.

I have hesitated to come here and write these thoughts down. I think I have mentioned this before but many times the act of writing down my thoughts about Mom’s MS makes it more real. It was one thing when her MS was secured in a tight neat little box that I felt we as a family had some control over. It is very different now that I feel we have no control over and sometimes I feel like we can’t even get a grip on it.

First Mom couldn’t walk. Now Mom can’t stand. Her handwriting seems to be slipping. I know this because I always loved her handwriting. She sent me a package in the mail and just getting the package out of my mailbox was emotional upon seeing the handwriting that had addressed it to me. I didn’t recognize it. Much like I am having trouble recognizing Mom.

It all goes back to writing things down. In this case receiving this package was a written statement to me that Mom is different. Our conversations on the phone…the lunchtime chats I have been having with her practically everyday on my lunch hour for the past five years are different. They are full of lots of the same conversations we have already had, simple thoughts, simple topics, nothing too complex and they are quick. They too make me sad.

None of this is easy and coming here to share it isn’t easy either. But I am because I think it’s important. This is part of my journey in dealing with Mom’s MS and unfortunately a lot of that involves the path Mom’s MS is taking compared to others. So I can’t promise I can talk openly about this everyday like I used to because part of my coping involves talking about it and the other part involves not talking about these changes and the evolution of our family with it. Sister K told me the other day on the phone: “I think we just have to accept Mom the way she is now and realize we are never going back.” It was profound and a simple thought but it was true. We are never going back- we are only going forward and that forward is into a place of unknown.

Thanks for reading as always. It means so much to have my space that is mine where I can come and share my thoughts.

My Head is Full of Nothing

Posted on by
3

People love drama. Not everyone, but some people really do. Just an observation I have made and one that is becoming a bigger one to Sister K and me recently. People complain of so much going on- X, Y and Z…and we just look at them. We empathize. We are sympathetic. We then share our own daily stresses…and we don’t get irritated in any way because the issues they describe are valid. Everyone has issues. It’s part of life.

But lately I am feeling a bit lost when I stop to think about how much is truly going on- I felt this way this past weekend while I was sitting at home at our kitchen table talking to Dad. He told me he just feels worn out. He has gotten help during the days for Mom but at night as soon as he gets home he said he literally has no time for himself. He goes all evening and all night long. He is a full-time caretaker. In some ways this would work if this was all he did but he also runs a major company during the day. He has the added stress of a full-time job on top of this. Then on top of that he is the head of our household. He is Dad- the one who is supposed to know everything and fix everything.

And now, in light of events from last week he now has the added weight of Papa’s hip replacement recovery. He is not responsible for the recovery and Papa really seems to be doing well- but Mom wants to get to the hospital to see Papa, therefore time now has to be allotted for that too. The process of getting Mom just out the door is a lengthy one, then getting her in/out of the car and back inside…it is not easy and it’s not quick. He told me that when he got the call in the middle of the night about Papa’s fall Mom was upset that he wasn’t more upset- and he said he just sat and stared thinking, how am I going to take on another thing right now?

He’s doing it though. Somehow he is doing it. But it worries me too. You can read between the lines and see why that would worry a daughter about her father. At the same time it frustrates me with Mom’s MS because quite honestly I don’t understand it. We have been told often by people the MS sort of ebbs and flows; you experience relapses; then recover; but Mom just seems to ebb. She doesn’t seem to go back to where she was before, she just gets worse– and I don’t understand why? Is that how this works? Is that how this is going to work for her? What is going on?

I have a lot of questions. Questions that are sitting right below the surface for me. Questions and concerns about all of this. I also feel helpless. I want to do more. I wish I could do more. I can listen but that’s all I feel like I can do- I can’t even think of advice to offer. Yesterday as I listened to Dad I just sat there with my head feeling blank…thinking how much more can you seriously take. I didn’t think this about myself- I thought this about Dad. And he doesn’t complain, he doesn’t get upset, he just takes it on- but I can see how it is wearing on him. I can see how he is tired. I can see how all of this is becoming too much…but then I am left with the question of how do you even fix that? How do you make it less? I don’t know how you do.

I feel like all I can do personally is not add to the stress. But beyond that I am at a loss. A head full of thoughts but no words and no way to fix anything.

Do you ever feel helpless that you can’t help a loved one more? How do you handle your MS with either yourself or as a caretaker? How do you stay positive and keep going? Does anyone even understand the path of MS?

Change of Plans

Posted on by
1

I know it’s been awhile. A lot has happened. For those of you who follow my blog and for those of you who pop in every once in awhile here is a simple but long update:

Canceled Plans:
Last summer I began talking about a cruise my family was going to take. We were going to go on Royal Caribbean Cruise Line, we had booked accessible rooms, I had booked scooter rentals, I had spoken with American Airlines about special needs issues on the plane, everything was rolling on normally…but I was nervous. I kept wondering if we were taking on too much. Taking on too much with this vacation- to put it simply, Mom has lost the ability to walk. As we got closer and closer to the cruise departure day, departure day being next Friday June 7, I kept having this small voice inside wondering if it was too much…I would then quiet the voice by rationalizing my way out of it…then the voice would re-emerge…and I would quiet it again. But in the midst of this I was praying. Praying that if we weren’t supposed to go on this cruise it would be revealed to us and without that we would just keep moving ahead.

Last Saturday that decision was made. Our Grandpa (Papa) fell in the middle of the night in his house, broke his hip and to have a partial hip replacement. His doctor said he could not go on the cruise. This then set off a sort of chain reaction where Mom did not want to go, Dad could not go if Mom was staying behind and then for Husband, Sister K and me to still go did not seem right. It seemed like a different vacation and it would be sad to go thinking of all of us not together. I also could not stop thinking, we are supposed to cancel. We are being told we need to cancel. It’s too much. Obviously too much for Papa but silently too much for Mom.

I am not in any way saying this happened on purpose, but I do believe it gave us an answer we had all been fighting out of our heads for awhile – We are not supposed to go on the cruise. Luckily our travel agent had convinced us to get travel insurance. I am in the process of gathering invoices, payments, etc but we will submit them and be able to get our money back.

But the lesson in all of this and Mom’s MS has been very clear to me- I can no longer plan ahead a year in advance. No longer assume Mom will remain the exact same. A year ago Mom had just gotten out of the hospital and was going into a rehab facility. Our goal at that point was to get her back to walking on her old 4 wheeled walker ‘Pinky’ from the standard walker she was using. A year later our goal is simply to get her walking.

Understanding While Not Understanding MS
Seeing that part of MS has been difficult to me- difficult because part of me believes she could try harder and walk because people tell us all the time of stories of this happening. The other part of me does not know if that is how this works and not walking is just another step. Regardless it is difficult to see the added stress this has added to Dad. It worries me in many ways. The amount of effort being exerted, the lack of sleep to help Mom up multiple times in the night, the nonstop nature of his days- not even ending when he sleeps. It’s difficult.

Process Overload
As you can see it’s been a lot. A lot I am processing and this is the first time I am writing it all out. The cruise cancellation is very fresh..less than a week to be exact. The reality of not going mixed with the reality of the unpredictable nature and path of MS is all slowly coming into place.

A Quick Life Update on Me

  • Husband graduated with his MBA, was offered a job and we are moving to a new city- still in the same state, about 3 hours from home instead of the 1.5 I enjoy now. Sister K will continue to live here so this will be adjustment for us.
  • I recently got a job offer in our new city and am going to be the new Public Relations Manager for a nonprofit organization. I start in three weeks and I am very excited! Knowing how difficult job searching is and having gone through the difficulties of it every other time I have searched for jobs before, I feel incredibly fortunate and blessed.
  • Also Husband and I adopted a 6 year old cat named Chloe. She will probably make an appearance on here at some point- we are pretty obsessed with her 🙂

I thank you for continuing to read as I sort through Mom’s MS.

Have you ever had any vacations canceled? Do you have any thoughts on the path of MS? How have you ever all of a sudden had a big reminder that life really is day to day, especially with MS? 

Is It Us or Is It MS?

Posted on by
3

Is there a way to walk your Mom with MS into a social gathering and not be the center of attention amongst friends? Or is this just something that is going to come with the territory now? It is something I am sitting here wondering today after a wedding this past weekend.

Halfway through, Mom needed to move from the table to her wheelchair to go to the restroom. So people gathered to help but really we didn’t need it. And the extra people just stared. Finally Dad said, why don’t ya’ll go dance or something and they quickly walked away.

Later Sister K took Mom into the restroom and after being gone for awhile I went in to help out. But people wondered where we were. Our absence created attention.

People wanted to ask Sister K, Dad and Me how Mom was- and that created attention. For the first time though, that part didn’t bother me. Maybe you could call it growth…but I didn’t get angry or irritated. I talked honestly to two of Mom’s close friends and one of their daughters. And they listened. They heard what I had to say- they admitted it is a lot for Sister K and I to be dealing with, they expressed they are worried, they wondered if there was more to be done, and I listened and I answered…I was honest.

But now today I can’t help but wonder if I shouldn’t have said anything at all. My family is a tight circle and a quiet bunch..and we are getting quieter as far as Mom’s MS is concerned. But at the same time, MS is not exactly a disease you can keep quiet- especially when people witness the changes in Mom with their own eyes and how those changes seem bigger every time they see her. So what do you do? What do you say? These friends of Mom’s are close to her and important to her, therefore it gets sticky. I don’t walk around telling anyone and everyone- and sometimes I don’t believe people’s intentions for wanting to know are good. But in this case I did.
So I struggle with how much do you say/how much do you reveal. Dad has said he doesn’t want Mom to be stuck at home forever…but if we are going to do things where we take Mom to events like this are we then also opening ourselves up for questions. Maybe we invite it upon ourselves. I am not sure exactly.

Does your family have any similar experiences with this or do you think it could just be a symptom of my family? Is it possible to hide what is really happening with a progressive version of MS or are people just going to ask questions? Do we possibly just need to understand this is what comes with the territory of taking Mom out considering the stage her MS is in currently?

The “Special Needs Family”

Posted on by
5

Mom has been having some issues this week with what the home health doctor thinks is her sciatic nerve. Dad had to practically commit an “act of God” to get someone from her doctor’s office to call him back with some pain medicine on Monday and Tuesday. I am learning that you literally have to take the motto “the squeaky wheel gets the grease” when it comes to dealing with neurologists. Maybe the ones where we live just are not that great or maybe it is the field of neurology- I’d be curious what your experiences have been? We are already on our second one and I don’t think there are very many others to choose from unfortunately. The doctor is good, it’s just the process involved if you have an issue outside of your appointment and the lack of communication follow through.

But I bring all of this up because this coming weekend Mom and Dad were supposed to come visit because we have a family wedding to attend. With Mom not doing so well, Dad has discussed with me several times the likely decision of not going to it. This is difficult because it involves Mom’s friends from college and one of their daughters. Going to the wedding is in many ways more for her than for us.

Aside from just the logistics of getting her here right now, I know Mom is not in the best shape and I don’t want her friends to see her like this right now. I was talking to Dad about how after awhile you just get tired of being seen as the “special needs family.” You get tired of the extra effort involved in getting Mom to these things, get tired of everyone treating us differently, the stares, people telling you how they think Mom is getting worse, wanting to get into your business about what you could be doing better….it goes on and on…

I know Mom has MS and I know this is just the card our family has been dealt. But that doesn’t mean I don’t get tired of dealing with the extra issues that come with the territory- the struggle to get easily in and out of places; the stares that come with this struggle; the comments that follow. It’s just frustrating, especially while I get to stand by and watch all of her other friends get around just fine. I have heard before it takes a special family to deal with everything we have going on and I know we are truly one of a kind to be able to handle it- but that doesn’t mean that I don’t get tired of it and wish it would all just go away. That’s how I am feeling lately as MS seems to be throwing more curve balls and I am struggling to keep up.

Do you think I am awful for admitting I get tired of being a “special needs family”? Do you ever struggle with how others treat you because of a disability either to you or to a loved one? Have you had issues with doctors being responsive outside of a scheduled appointment?