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Blog Title: What I Learn About Living From My Chronic Illness by Shelley Peterman Schwarz
Chronic illness changes every aspect of your life. In my blog, I reflect on my 30+ year journey living with primary progressive multiple sclerosis (MS). I share thoughts, insights, and lessons learned that hopefully will help you or someone you know. - Shelley
By Shelley Peterman Schwarz on Monday, February 25, 2013

Wisconsin State Journal logoFebruary is American Heart Month and everywhere we look, we can find ideas and tips for keeping our hearts healthy.  But I think there’s another “heart condition” that rarely gets attention, and yet, it has the power to make us sick as well.  It’s “heartache,” that feeling that your heart is about to break from the pain and sadness of losing someone you love.  My guess is that most people have had an experience like this sometime in their life.  Time helps the condition of "heartache," but there is always a hole in our hearts from our loss. 

 

My first experience with this excruciatingly painful condition was when...

By Shelley Peterman Schwarz on Wednesday, February 13, 2013
Shelley at her deskI recently heard from a reader who had just been diagnosed with a condition that affects the part of the brain that controls mood and memory. Describing himself as a somewhat negative person, he was panicked, equating memory loss and death with the diagnosis. He knew that he was headed down a dark and isolated path and wanted my advice for keeping the scary thoughts at bay; in other words, how could he stay involved and engaged in life

 

It was sad to read his letter and it brought back my own memories of my struggle to stay positive given my unknown future. 

 

Dear Sad,

By Shelley Peterman Schwarz on Monday, February 04, 2013

Wisconsin State Journal newspaper logoLiving with any kind of chronic medical issue, obvious or hidden can affect every aspect of a person's life. I hope after reading this week’s column, you’ll understand why this topic is so important to me and why I’m making this special request:  Please try to "see" and accept the hidden ones as well as the obvious ones.

My assistant, Deborah, has multiple chemical sensitivities which affect every aspect of her life just as my multiple sclerosis (MS) affects every aspect of mine.  The difference is that people can see that I have a disability (they may not know the cause), but they see my wheelchair and they know that I have limitations.  However, Deborah is “not as lucky as I am.”

By Shelley Peterman Schwarz on Wednesday, January 30, 2013

7 " Snowfall from my front doorWhy is it that we feel judged by others when we are really just taking care of ourselves?  A friend was planning to stop by today but this morning she sent me an email to say that she would not be coming if the predicted snowfall (3-7 inches) materialized.  She apologized profusely for being “a wuss” when it came to going out in the snow.  


 

I did not want her to feel bad about wanting to "stay put" tomorrow.  Frankly, I ...



By Shelley Peterman Schwarz on Wednesday, January 16, 2013

When I was diagnosed with multiple sclerosis (MS) in August of 1979, my world as I knew it changed forever.  When it came time to send out holiday cards a couple of months later, I couldn't face writing the news of my diagnosis over and over again on each card. 

 

So, I took a chance and wrote my first, "Schwarz Family Winter Letter." (I didn't want to write a depressing letter, nor did I want to gloss over the seriousness of the diagnosis.)  I sent the letter to family and friends who had moved or lived out-of-town. Sending out that letter meant that I didn't have to call or write "the same story" dozens and dozens of time.  In addition, everyone heard the same message at the same time.

 

The response to the letter was so positive and caring that, for the past 33 years, I've continued to write the "Schwarz Family Winter Letter."

 

Below is this year's letter:

 

Dear Family and Friends,                 Winter 2012                                       

It seems like only days since I last wrote the “32nd Winter Letter.”  Yes, this is the 33rd year for the annual epistle, the Schwarz Family Winter Letter.  It marks the beginning of our 34th year as a family living with multiple sclerosis.  Thankfully, it’s been a wonderful year for all of us, with only one exception. First, all the good stuff…

 

Home Accessibility book coverAs I mentioned in last year’s letter, my 7th book, Home Accessibility: 300 Tips for Making Life Easier was published in January, 2012 and it won the Books for a Better Life Award – MS Awareness Award, sponsored by the National MS Society-New York Chapter.  The awards ceremony was in New York City in early March. Unfortunately, Dave was not able to get away for the trip.

 

So, I asked Mom (Ruthie is now 89) to join me as a representative from our family, and my dear friend and world traveler, Joan Gillman, agreed to accompany me as my traveling companion.

 

By Shelley Peterman Schwarz on Monday, January 14, 2013

Wisconsin State Journal logoWhen I was young, the holidays meant the older generation would eat and converse around the dinner table while the kids went outside to play. Nowadays, it’s more likely that the kids are plugged into a computer or gaming system creating a lot of ambient beeping, exploding, and cheering noises. When you add in the screaming and shouting at the big game on TV, the noise and chaos sometimes makes me wish I could click my heels together and be transported to the "Land of Peace and Quiet." Before the holidays next year, I'm going to review this list...

By Shelley Peterman Schwarz on Thursday, January 10, 2013

Shelley in bed with her family

 

Having to stay in bed 23/24 hours a day for 3 months due to a Stage I pressure ulcer, was not easy.  But I did it!  And now I share...

By Shelley Peterman Schwarz on Wednesday, January 09, 2013

Shelley and Hannah working out "I am so glad when you leave," I blurted out one day after a particularly taxing exercising session.  Hannah looked at me in surprise. It was clear that I had hurt her feelings. I stopped and thought about my innocent comment and then started to laugh.  What I really meant to say was, "I feel so energized and limber after we workout; it's easier to move 'reluctant' body parts."

 

I never was a fan of physical fitness and truth be told, I never liked to exercise. I was more of a spectator. What got me to consider exercising was the fact that I was feeling stronger and knew that I might be able to handle more "physical exertion." 

 

Then, one day ...

By Shelley Peterman Schwarz on Monday, January 07, 2013

Wisconsin State Journal newspaper logoThey say that, Friends are like pillars on your porch.  Sometimes they’re there to hold you up. Sometimes they’re there for you to lean on.  And, sometimes, it’s just enough to know they’re standing by.  I know that one of the reasons I’m able to live the life I do is because of my friends. The older I get the more I realize that friends often pop in and out of our lives over many decades.  Some of my friends are funny; some are creative; some are serious.  Most of us would be sad and lost without our groups of friends.  And, every once in a while, a friend will touch your heart in a very special and unexpected way, and you truly understand the wonderful depth that friends bring to your life..

By Shelley Peterman Schwarz on Monday, December 24, 2012

Wisconsin State Journal newspaper logoAt this time of year, we reflect on the many blessings we have and consider how we can share our bounty with others who are not so fortunate. I'm very grateful for the many blessings that fill my life. My husband has been employed with the state of Wisconsin for more than 40 years; we live in a beautiful house; our children are college graduates who have good jobs. (What more could parents ask for?)  And, I realize there are people in this country and around the world who have far less, which brings me to today's column: "A Time for Sharing." 

 

I was born and raised in Wisconsin and have lived here all my life. My husband Dave was born in the Philippines during World War II. He came to this country at the age of three when his father was hired as a rabbi in Benton Harbor, Michigan. His parents lost everything twice: once when they left Germany, and a second time, when the Japanese bombed the Philippines. Coming to this country was a miracle of sorts for them, and Dave and his family has always been grateful to be naturalized American citizens.

 

Seventeen years ago, I was looking for a seamstress to make some clothes for me because my multiple sclerosis (MS) had weakened me to the point where shopping for clothes was impossible.  Through a series of serendipity events, ...

By Shelley Peterman Schwarz on Thursday, December 20, 2012

Shelley speaking

I could feel her eyes rivet on me as I spoke. When I ended my keynote address, she raised her hand to ask a question; "Do you think of your MS as a blessing?" Not the typical question from a "Business Women's Expo" audience.

 

Pausing a minute she added, "Because I think of my having MS as a blessing." It wasn't the first time I had been asked that question. Nor was it the first time I had answered it.

 

Years ago I asked myself that same question. Now the three hundred women were silently awaiting my answer. And my answer was and still is ...

By Shelley Peterman Schwarz on Tuesday, December 11, 2012

All though this happened several years ago, it's a great reminder of the importance of a positive attitude, being prepared for the unexpected, and having friends to help you when you really, really need them.

 

Here's the story in 3 parts....

 

It was a glorious fall day as my husband Dave left for the first University of Wisconsin football game of the season.  I was thrilled that I would have 45 minutes by myself before my friend Ina came over. Because the effects of multiple sclerosis have severely limited my physical ability (I have no use of my legs and dominant right arm and minimal use of my left hand), it’s important for my safety that I have people around me most of the time. So when I have even a few minutes alone, it’s a REAL treat!

 

I cranked up the volume on my stereo and put on a tape of (Jack Canfield’s) affirmations -- a series of simple, positive life affirming messages like, “I am a good person. I am loveable and capable. I take control of my life.”  

 

Then I went into the bathroom to set out my pills for the next week.  I could hear the affirmations in the background: "I surround myself with happy and successful people. I have what I need to get what I want. I move confidently through life.”

 The pill bottle on the floor by the toilet

Opps! One of the bottles fell on the floor between the wall and the toilet. So I went to pick it up. ...

By Shelley Peterman Schwarz on Tuesday, November 20, 2012

Shelley with TV Anchor

 

  • Today, I will make my monthly appearance on News 3 at Noon.  In south-central Wisconsin, you can watch the program on Channel 3, WISC-TV.  My "Tips for Making Life Easier" segment is on between 12:15 and 12:30.   If you miss the telecast or are unable to get the show in your area, don't worry.  I'll post a video of the program on this blog later today.  (Click on Read More below)

     

In today's segment, I'll share tips and strategies to make home entertaining safer and easier.

 

By Shelley Peterman Schwarz on Tuesday, November 13, 2012
National Multiple Sclerosis Society logoA few years ago, the National Multiple Sclerosis Society contacted me about doing a series of short videos for people living with Primary Progressive MS (PPMS), (my diagnosis.)

 

The videos are currently posted on YouTube.  In this video, I invite you into my home and share how I stay connected to my family and friends despite severe physical limitations. 

By Shelley Peterman Schwarz on Monday, November 05, 2012

Wisconsin State Journal newspaper logoI’m thankful for so many things I wouldn’t have room in this column to mention them all! But perhaps the thing I am MOST grateful for is having people in my life who love and support me--my “care givers.”  To me, the gift of caring is the greatest gift that one person can give to another.

 

My husband Dave, for example, is the person who has been at my side ever since my multiple sclerosis (MS) journey began more than 32 years ago. When our children were home, they helped, too; however, now that we are empty-nesters, all the care giving has rested on Dave’s shoulders. He is a remarkable person who just does what needs to be done without any expectation or thought of “payback.” He’s always there to help me, even when it isn’t convenient (like in the middle of the night.) And, he never complains; that in itself is a gift of IMMENSE proportion.

                                      Dave and Shelley all dressed up

At all times, but especially this month, our family caregivers deserve our thanks and appreciation for all that they do, especially since...

By Shelley Peterman Schwarz on Tuesday, October 30, 2012

McDonald's Hot Fudge Sundae

 

Yesterday, we drove home from Chicago after a weekend of babysitting for our grandchildren.  On the way back, I asked Dave to stop at McDonald's for one of their hot fudge sundaes. At only 330 calories, it's a little treat that I allow myself.

 

Why do I NEED A TREAT?

 

By Shelley Peterman Schwarz on Friday, October 05, 2012

Bouquet of flowersWhen you order flowers to be delivered to a friend in the hospital, give the friend's home address as a secondary delivery location.  Then if your friend is released from the hospital early, he/she will still receive your flowers.

By Shelley Peterman Schwarz on Monday, September 17, 2012

“Hello, Shelley?  This is Sue.  Are you busy?”  Her voice was weak and breathless.  I clamped my ear to the phone and strained to hear.

             

“No,” I responded, wondering why shy, private Sue was calling me.  “Where are you?”

 

“I'm in the ICU at University hospital.” Then she proceeded to tell of a long list of medical problems that, one after another, had resulted in her hospitalization. 

 

Why did she call me?  I wondered.

 

“I hope you don’t mind my calling you,” she said.  “I thought you were the only person I knew who might understand what I’m going through.”

Her words instantly transported me back 27 years to a time when I was enduring a 3-week hospital stay.... when everything in my life that could go wrong did go wrong.   It was a time when I felt like I had no control and was totally alone in my world....
By Shelley Peterman Schwarz on Thursday, September 13, 2012

Jamie 5 and Andrew 3“Mommy, are you going to die?” my 5 year old daughter, Jamie asked when we told her that Mommy had an illness called multiple sclerosis (MS) and the doctor didn’t have any medicine to make Mommy better.

 

It was the first of many nights that I cried myself to sleep because my MS diagnosis, I cried because my diagnosis robbed my child of the carefree childhood she deserved. And, although MS is not a fatal disease I worried about the future.

 

Some might ask, why would you tell your child in the first place and I would answer that question by saying this:

By Shelley Peterman Schwarz on Tuesday, September 11, 2012

We’re “lucky” if we have a diagnosis and if our illness is one that people have heard of. It validates our complaints and symptoms and adds credibility to our limitations. Our friends and loved ones want to be helpful and lend their support. It’s our responsibility to share with people how they can help us.

                  Shelley with her mother and granddaughter

Many years ago, a girlfriend told me about her husband who had gone into the kitchen to get himself a drink. She mentioned to her husband that she, too, was thirsty. When her husband returned with his drink but not one for her, she snapped at him for not bringing her a drink.

 

So often, we expect people to read our minds, when we really have not been clear about what we want. We have to be

By Shelley Peterman Schwarz on Monday, September 10, 2012

When people told me that I should attend support group meetings, I REFUSED to go. Even though I was in a wheelchair, I did not identify with “those people.”

 

No matter how old you are or what stage your chronic illness is in, accepting your limitations and increasing disability is difficult. For me, it was exceedingly important to get the emotional support I need. We can’t do it alone, nor can we depend only on our care partners for support.

                         Shelley with her girlfriends

By Shelley Peterman Schwarz on Tuesday, September 04, 2012

I was a doer.  I was always taking care of people.  I was a wife, mother, daughter, sister, and friend.  I rarely thought about my needs or my wants.  Who had time?  I was too busy.  

 

And then, I was diagnosed with a chronic illness (multiple sclerosis-MS) and it put an end to my life as a doer. I had to learn an important new lesson for living and it was not easy.  What was this lesson?

                    

By Shelley Peterman Schwarz on Monday, September 03, 2012

A few years ago, Jamie and her family were here for a visit. After they left, my husband, David, “tidied up” while I started downloading movies and pictures of our time together.

 

As I waited for the camera finish downloading the pictures, I looked across the room to my file cabinet and saw granddaughter Jordan’s handy work from when we played school earlier this morning – several notes and papers kept in place by magnets she found.

 

The kids are so young.  What memories will they have of me? Will they know how my whole body smiles when they are around?  Will they know...

 

By Shelley Peterman Schwarz on Monday, August 20, 2012

I received a supprise today, a totally unexpected gift.  We were in Milwaukee visting my mom and Aunt Shirley.  Just as we were ready to leave my aunt’s condo, she handed me a little jewelry box, like a ring would come in. What was this? Why was I getting a present?

 

The minute I cracked open the box, my eyes filled with tears. Inside was...

By Shelley Peterman Schwarz on Tuesday, August 14, 2012

At a family reunion in Chicago a couple of years ago, everyone walked to Navy Pier for a ride on the 150 foot-high Ferris Wheel with its spectacular view of Chicago. As husband, David, counted the number of tickets we would need, my nephews and son asked me if I wanted to go along for the ride.      

  

              


I admitted that I would love to go. (I wouldn’t have even brought up the subject because of the accessibility issues and had already planned to stand guard over the strollers and diaper bags while the parents and kids went on the ride.)  But the “boys” wanted me to go and were insistent that we could do it! They were so eager to help; how could I refuse?

So, in front of everyone...

 

 

By Shelley Peterman Schwarz on Monday, August 13, 2012

Friday I had a doctor’s appointment and that meant that I had to find a way to get there.  (I haven’t driven a car since September 11, 1985  – a date I’ll never forget.  I was 39 years old.)  I always feel like I’m imposing on people when I call and ask them for a ride. I could use public transportation but...

By Shelley Peterman Schwarz on Monday, August 06, 2012

There was a time, many years ago, when I was contemplating taking my life.  My progressive and progressing multiple sclerosis (MS) was unrelenting, and everyday my physical abilities deteriorated.  I was more than sad; I was despondent. I lived without hope and worried about the future every day and every dark night.  I feared if I waited too long, I wouldn’t have the strength or physical ability to end my life.


In my mind, I was a burden to my family, even though they were always there to lend assistance and bolster my sagging spirits.  But I hated the fact that I needed so much help dressing, grooming, taking care of my personal needs, even getting in and out of bed.  My husband, Dave, couldn’t even get a good night’s sleep because I’d wake him up in the middle of the night to help me readjust my sleeping position. ...

By Shelley Peterman Schwarz on Thursday, August 02, 2012

My husband, Dave, just went out for a bike ride on his new bike. He's been trying to go out 5 or 6 times a week even though we've had record breaking heat, 80s, 90s, and 100s with high humidity. I'm thrilled that he has an activity that he enjoys. But I must admit that every time he goes out, I worry a little bit and don't completely relax until I hear the door open upon his return.

 

I think I worry because I feel vulnerable.  Being severely disabled due to multiple sclerosis, I ...

By Shelley Peterman Schwarz on Monday, July 23, 2012

In this life, we don’t always understand why things happen the way they do.  It’s human nature to ask, “Why did I get multiple sclerosis (MS), Parkinson’s disease, cancer?  What did I do to deserve this?”  Chronic illness isn’t a punishment for something we did wrong nor is there anyone to blame.

 

Even if we believe the illness isn’t our fault, it’s easy to be depressed, to go inward, to stop going out, and to cut off connections with people who have been in our life.  However, the person we hurt the most when we do that is ourselves.

 

When I found my world shrinking, I ...

By Shelley Peterman Schwarz on Monday, July 16, 2012

It's 4:30 am and I'm lying awake listening to Dave snore.  I really can't complain when I was the one to wake him up at 3:00 am to take me to the bathroom.  I had fallen asleep around 10 while he was watching a "guy flick" next to me in bed.


When I woke him, he told me that he had not been able to fall asleep since the movie ended, admitting that he almost fell asleep during the movie but fought through it to finish watching what he had started.  (Why is it that he HAS TO FINISH any TV program/movie he's watching even when his body is telling him, "Enough! Turn it off and go to sleep?")


Living with MS taught me...
By Shelley Peterman Schwarz on Thursday, June 28, 2012

I love my caring and empathetic friend Carol.  But 20 years ago, she called me with news that really surprised me and made us both feel like she had carried “empathetic and caring friend” a little too far. After you hear the story, I'm pretty sure you'll agree with me.


Carol and I met 33 years ago, just a few months before my MS diagnosis.  She and her family moved into our neighborhood in the summer of 1979.  Her son, Dan, and my daughter, Jamie, were both 5 years old and they became instant friends. When the school year began and the kids were in the same class, our friendship got closer, as often happens with mothers of young children.

            Carol was one of those friends who...

By Shelley Peterman Schwarz on Wednesday, June 20, 2012

Having gone to Girl Scouts camp as a child (years before my MS symptoms and diagnosis), I had fond memories of my outdoor adventures and longed to get outside in that environment again. However, when I grew up and MS entered my life, Dave and I never went camping with our kids (Jamie and Andrew) when they were little because my limitations were too difficult to accommodate in a rustic outdoor setting.  We were barely "hanging on" doing the necessary household and school activities, without creating new challenges. 

 

 

 

Now it was time to be adventurous and try getting the family together for a camping experience, at the accessible Cabin in the Woods in Mirror Lake State Park in Wisconsin!

 

It was easy to dream of that idyllic "Christmas holiday" type of family reunion, when family comes from near or far just to be together...

By Shelley Peterman Schwarz on Tuesday, June 19, 2012

For a few minutes this afternoon, my Mom and I were alone at the cabin. It was so quiet and the surroundings so beautiful, that the enormity of this once-in-a-lifetime opportunity to be with my family at the accessible Cabin in the Woods at Mirror Lake State Park in Wisconsin really hit me.  

 

I asked Mom to come over and put her arms around me, and then I started to sob.  As I sobbed, I tried to tell her...

By Shelley Peterman Schwarz on Monday, June 18, 2012

Thank goodness Dave and I had a cabin that had heat last night because we needed it.  Son Andrew and his family slept in a tent, and although they were prepared for the cool/cold night, it felt good to them to come into our warm cabin this morning for that first cup of coffee.

 

It really is working well that we each have our own "sleeping quarters" so our kids (Jamie and Andrew) can get all the grandkids to sleep using the nightly rituals they're used to.

 

And, I am letting my adult children (Andrew is 36 & Jamie is 38) and their spouses negotiate the daily plans. It takes the pressure off me and I love it that I'm not in charge...

By Shelley Peterman Schwarz on Friday, June 15, 2012

I was so excited the night before we left for our family camping trip, I hardly slept a wink.


The plan was for Andrew and his family and Jamie and her gang to meet at Mirror Lake State Park, in Wisconsin, (about 45 minutes from our home in Madison.)  It would be a new experience for Jamie's 3 kids (3, 5, & 7), who have never been camping.  Andrew and his family are avid campers who have been known to camp in all four seasons.


    


Dave and I would sleep in the fully accessible Cabin in the Woods.  The one bedroom cabin has heat and air conditioning, a kitchen, a bathroom, a living area, and a screened in porch.  In addition,...

By Shelley Peterman Schwarz on Thursday, June 14, 2012

   

Last October, Debbie, (my office assistant), and I spent one night at the Cabin in the Woods at Mirror Lake State Park and ever since I've dreamed of taking my family there to camp.  It was a pipe dream or something for my Bucket List; realistically, it probably wouldn't happen. 

 

And then, through a series of coincidences an opportunity to make my dream come true materialized.

By Shelley Peterman Schwarz on Wednesday, June 13, 2012

My grandchildren, ages 5 and 2, are visiting and our house is a whirling dervish - reminders of the days when their father, Andrew, and Aunt Jamie, were young.  I love watching Andrew's children play. They play like this all the time and it is a joy to watch.



Back when Andrew and Jamie were young and my progressive and progressing multiple sclerosis (MS) kept me in a constant state of overwhelming fatigue, I was always...

By Shelley Peterman Schwarz on Thursday, May 31, 2012

In case you haven’t noticed, the world is not flat and when you’re in a wheelchair, (my Amigo TravelMate) that can often be an issue.  

 

   

 

Watch how I get into the Magnolia restaurant in downtown Charleston, SC for dinner with the Benton Harbor boys and their wives.

By Shelley Peterman Schwarz on Wednesday, May 30, 2012

You know when friends care.  They do and/or say things that include you in a way that seems so natural.  Let me tell you about the Benton Harbor gang.

  

 

When we arrived at the beach house that we were to share for a week, I got my first inkling of how the week would go. I was really touched by the fact that the first 3 couples to arrive waited for Dave and me to arrive to...

By Shelley Peterman Schwarz on Tuesday, May 29, 2012

 

 

Dave and I are tried something new for our vacation this year.  We rented an accessible, 6 bedroom house in Isle of Palms, South Carolina, near Charleston with five couples.

 

 

The "boys" grew up together in Benton Harbor, Michigan, and have stayed in touch over the past 50+ years. We had never done anything like this before, but from what short periods of time we had spent together over the years, I was confident that this would be a wonderful vacation for us.

 

Because of my special needs, vacationing for us is different.  When we leave the comforts of our accessible home, my husband Dave has to basically “do everything.” He has to pack and carry the suitcases, do all the driving, and lift me and my wonderful little Amigo® scooter into and out of the car - not to mention, that he still has to help me dress, get in/out of bed, and onto the bathroom commode.

By Shelley Peterman Schwarz on Monday, May 28, 2012

When I was diagnosed with a primary progressive form of multiple sclerosis (MS), my daughter, Jamie, was five years old. I was only 32 and worried terribly about my future. I worried that I would not live as long as other mothers, or that I would become too incapacitated to participate in my life or the lives of my children. Being in my mid-30's, with young children, (Jamie's brother Andrew, was 3), I worried what the future held. How long would I be around and how disabled would I become?

 

So, last Friday night proved to be one of those VERY MAGICAL times in my life, a sort of full circle event, that filled me with love and gratitude.  Let me try to explain by taking you back 31 years...

 

Jamie in the center.

 

Exactly 31 years ago, Jamie was 7 years old. 

By Shelley Peterman Schwarz on Wednesday, May 23, 2012

My son, daughter-in-law, and their children (4 and 2 ½) are coming for a visit and I can hardly wait! Since they live 1,000's of miles away, we don't see them as often as we would like so these visits are very precious to me...any time I can spend with my adult children and their children is pure joy!

 

 

 

I missed so much when my son and daughter were growing up because my progressive form of MS was so physically and emotionally draining. The debilitating fatigue could only be described in terms of this, if the house was on fire, I didn't have the strength or energy to get out of bed to save my life or the lives of my children.

 

I fought hard to stay engaged, but I missed huge chunks of time with my family because I was in bed, often sleeping.  So, now that my MS is stable, I have another chance...

By Shelley Peterman Schwarz on Tuesday, May 22, 2012

This past weekend took a lot out of me.  With being with extended family on Saturday night and Jamie and the kids on Sunday, for a belated Mother's Day, I have been having trouble falling asleep.  I think it’s because I was over tired, that always seems to happen when I push myself too much.  I could barely keep my eyes open when Dave helped me out of bed this morning. 


Instead of fighting it, I gave myself permission to...

By Shelley Peterman Schwarz on Monday, May 21, 2012

  (L) Brother Steve, Mom, brother Tom)

I had a wonderful Mother’s Day filled with lots of love and gratitude and it's taken me a week to be able to express my thoughts about my mother. 

 


I am deeply grateful that I was able to celebrate Mother's Day with my 89 year-old mother. She’s quite a beautiful, gracious, delightful lady, and is still very much the highly respected matriarch of our family.  Even though Dad passed away 22 years ago, Mom continues to teach our family what's really important through her example.

 


Anyone who is a mother knows what a difficult mine field it is when you’re raising children. We do it without a road map or directions, and many times we do it carrying the scars from our own less-than-perfect childhoods. Here are are some of the best lessons I learned from my parents...especially my mother -- about being a mom.


By Shelley Peterman Schwarz on Sunday, May 13, 2012

  (R to L) My mom, daughter, Jamie, & Mom's sister, Aunt Shirley.  (Me, front and center)

 

Today is Mother’s Day and I’m deeply grateful that I can celebrate the day with my 89 year-old mother. She’s quite a beautiful, gracious, delightful lady, and is still very much the highly respected matriarch of our family.  Even though Dad passed away 22 years ago, Mom continues to teach our family what's really important through her example.

 

Anyone who is a mother knows what a difficult mine field it is when you’re raising children. We do it without a road map or directions, and many times we do it carrying the scars from our own less-than-perfect childhoods. On this Mother's Day, I’d like to share with you some of the best lessons I learned from my parents...especially my mother -- about being a mom...

By Shelley Peterman Schwarz on Thursday, May 10, 2012

Recently I received call from a woman who had MS; her son was in his 20’s and was being verbally abusive to her. His anger over her MS and how it was affecting “his life” was escalating and she was worried about her safety; she finally had to resort to having a restraining order taken out against him. She needed to talk to someone (me in this case) about her situation.

 

It wasn’t the first time I’ve received a call, letter, or email with a story like this.

By Shelley Peterman Schwarz on Monday, May 07, 2012

Here I am with my mom, my Aunt Shirley, and my cousin "S" having lunch at a fancy restaurant, the Lake Park Bistro, in Milwaukee, Wisconsin.  We're all dressed up and I'm feeling joyful because we're all together.  (My cousin battles health conditions that make MS look like nothing at all.)

 

So when the food was delivered, "S" and I looked at each other and start laughing.  We ...

 

By Shelley Peterman Schwarz on Thursday, May 03, 2012

Before I was diagnosed with multiple sclerosis, I didn't know what to say or what to do when I learned a friend, neighbor, or colleague was diagnosed with a serious chronic illness or life-threatening disease.  I wanted to reach out and to be supportive, but I didn’t know how and, I certainly didn't want to be intrusive or appear "nosy." 


That was 30+ yeas ago.  My own journey living with MS has taught me many lessons, especially about staying connected with those around you who may be going through difficult times. Whether I discovered these ideas on my own or learned them from others, here are my best ideas for "what to say and what to do."...

By Shelley Peterman Schwarz on Wednesday, May 02, 2012

Who knew Facebook could unite two old friends in the midst of New York City?  I guess that's what social media is all about - connecting people!!!  Duh, Shelley!!!  Let me tell you how it happened...

By Shelley Peterman Schwarz on Saturday, February 11, 2012

Our Celebrity Caribbean Cruise leaves on Monday and we're on our way to Milwaukee, 90 miles from our home in Madison, Wisconsin. We'll pick-up Mom and the 3 of us will stay in a motel tonight across from the airport. On Sunday, we fly to Fort Lauderdale, Florida. (Living in Wisconsin, we decided to go to Florida a day early.  We don't want any snowstorm to disrupt our vacation plans.)


Sitting quietly, as Dave drives, I barely notice the ballgame on the radio.  I'm trying to settle myself down and recharge my batteries after a busy morning getting ready to walk out the door for nearly 2 weeks.
As I mentally go through my list of necessary items, I suddenly get a sinking feeling in my stomach. I know I have the battery charger for the camera, the cord to download the pictures to my laptop computer, and an SD card with extra memory. But OMG! I didn't bring the camera. I CAN NOT BELIEVE I FORGOT IT!!!...
By Shelley Peterman Schwarz on Tuesday, September 06, 2011
Dave gets his cast off today and a “walking boot” for the next 6-8 weeks. He plans to go straight to work after his doctor’s appointment. He feels like a caged animal being so restricted and having no place to go with all his (unlimited) energy.  Being unable to drive or run out to pick something up is driving him nuts.
By Shelley Peterman Schwarz on Saturday, August 06, 2011

Dave just went out for a bike ride on his new bike. He's been trying to go out 4 or 5 times a week even though we've had record breaking heat, high 80s and 90s with high humidity. I'm thrilled that he has an activity that he enjoys. But I must admit that every time he goes out, I worry a little bit and don't completely relax until I hear the door open upon his return.

 

I was especially glad that when he bought the bike he also bought a new helmet. Dave also carries his cell phone with him, just in case. He looks so cute in his new biking shorts with the padded behind.

 

By Shelley Peterman Schwarz on Thursday, June 09, 2011

I continue to marvel at how my children (Jamie and Andrew) are parenting their children. A lot has changed in the parenting world since Dave and I were parents. I must admit, what a joy it is to be grandparents! And, to know that we're not in charge any more is a big relief - at least it is for Dave and me. 

 

Jamie and Andrew and their spouses have their own (strong) opinions about how they want to do things. And you know what?

By Shelley Peterman Schwarz on Wednesday, June 08, 2011
Carol, Barbara, Mary, and I have been friends for more than 40 years. We met when we were working at the same school. We started having dinner together every month and have continued to do so all these years. I love them like Shelley's girlfriendsthey are my sisters. They are wise, compassionate, empathetic, supportive, and caring. We have gone through so much together...
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