Locating a mental health professional to help you cope What I've learned about living from my chronic illness - Coping Strategies
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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 Sunday, March 20, 2016

I was so naive Wisconsin State Journal Logoand unprepared when I became a parent. I was completely overwhelmed by the 24/7 parenting responsibility. And, I certainly didn’t expect to be diagnosed with multiple sclerosis (MS) when Jamie was 5 and Andrew was 3. I quickly realized that being a parent with a chronic, progressively disabling condition is a challenge of monumental proportions. So, how did I manage? How did I cope? What do I know now that I wish I’d known then?

 

Probably the first thing I learned was that there are certain things beyond a parent’s control. One of those things is that kids are born with a certain temperament, a sort of genetic way of being. Some kids are born happy. Some are born fussy. Some love a crowd while others hide in the corner. I didn’t think children had much personality until they were 2 or 3 years old and I thought, as their mother, I’d have more influence on my children’s temperament and personality than I did.

 

Thinking back to those early years, all I remember is being exhausted all the time. It wasn’t until we got into a daily routine that life became manageable. We ate meals at set times. We all rested at nap time. Bedtime rituals had a starting and ending point. If we didn’t have a schedule, everything fell apart and I was just as whiny and cranky as the kids were, maybe even more so.

 

I also realized that when you have two kids, one will be good when the other misbehaves. I often wondered if, after I went to bed, my kids got together to plot whose turn it was next to “act out” and drive me “up-the-wall.” Recognizing this pattern helped me manage. (My friends who had more than two children confirmed my findings that there’s always someone who demands extra time and attention.)

 

Doing chores seemed like it should be a logical extension of living in a family. When the kids did help, I had to learn to accept the level of help they were able to provide. The floor was not always swept as carefully as I would have liked and books were not always put on the shelves neatly. But, the job was done and as the kids got older, their skills and abilities improved.

 

When the children’s bedrooms became disaster areas, I closed their doors and waited for an opportunity to “encourage” a cleanup. Sometimes it took the start of a favorite TV program to get a necessary chore done. I was not above bribery.

 

If I was too tired or unprepared to handle a dispute or unacceptable behavior, I’d tell the kids to go to their respective rooms. I explained that I needed time to think over the situation before I could react. It helped me handle stressful times more rationally.

 

Throughout their growing up, I tried to treat Jamie and Andrew with respect, even when they were showing their less-than-perfect sides. I tried to react like a rational adult. Sometimes I was successful, sometimes I wasn’t. My motivation was the Golden Rule I learned as a child. In other words, treat your kids the way you would want to be treated because, one day your children will be in a position to treat you as they were treated. It’s a sobering thought.

 
By Shelley Peterman Schwarz on Sunday, December 15, 2013

Wisconsin State Journal newspaper logoIn my last entry, I shared with you that when I was diagnosed with shingles in October, it upset the delicate balance of my life living with a chronic illness (multiple sclerosis – MS.) It sent me into a valley of depression so deep that I was having dark and scary thoughts.  Afraid for my own safety, I checked myself into the psych ward at Meriter Hospital.  

 

Thankfully, with the help of excellent physicians, medications, and therapy, I am feeling much better.  My depression is beginning to dissipate and I don’t feel like I’m always on the verge of tears.

 

In the past, when I’ve gone through a difficult time, I would handle it by talking with my husband, mother, and a few close friends.  However, I’d rarely tell our two children.  I know it’s because I still feel guilty for “ruining” the carefree childhood they deserved. They were 5 and 3 when I was diagnosed with MS and even though we tried to keep life as normal as possible, the children worried about me.  When we told them that Mommy had an illness and the doctors didn’t have any medicine to make her better, our darling daughter asked, “Mommy are you going to die?”  As the kids grew, they worried, “Who would help Mom get to the basement if there was a tornado and no one was home to help her?  Who would help Mom in the bathroom if we’re gone all day?”

 

Today, those “kids” are married and have children of their own. (Our daughter is 39 and our son is 37.) Their lives are so busy working and raising children that I didn’t want to add any extra worry or stress to their lives.  And, I didn’t want them to see me as weak and needy.

 

I learned that if I didn’t want the kids to keep secrets from me, I better not keep secrets from them. And so I shared my shingles experience with them.   Perhaps the biggest surprise came from our daughter, who, when she heard about my recent struggle, said, “Mom, it’s not natural to be up all the time. I thought you always sounded fake when you acted that way. ” Since the crisis, communication with both of our children has been more open and honest.  

 

Please know that I continue to feel the prayers of healing and words of encouragement and appreciation from family, friends, and you, the readers of this column.  Those messages gave me strength.

 

In our 44 years of marriage, Dave and I have faced many challenges together, but the “shingles episode” has been the most difficult. How fortunate I am that Dave was at my side as my advocate and champion.  And, bless his heart, even in the midst of the crisis, Dave remembered the most important thing caregivers must do - take care of themselves!  During my hospital stay, the Badgers had a basketball game.  As a season ticket holder, Dave wanted to go to the game.  Not wanting me to be alone, he scheduled a few close friends to visit me during the time he was gone.  I hope the Badgers appreciate this man as much as I do!

 

In my next column, I’ll share what I learned during the “great depression.”  Stay tuned!

 

 

 

 







By Shelley Peterman Schwarz on Sunday, December 01, 2013

Wisconsin State Journal newspaper logoSeveral weeks ago I wrote about my wonderful experience at the top of Durango Mountain.  Little did I know that a few weeks later, I would be “sucker punched” with shingles and would experience the opposite end of the emotional spectrum. 

 

This is the second time I’ve had shingles in 5 years – even though I had the shingles vaccine.  Who knew you could get shingles more than once?  Or, that the shingles vaccine, which I had, doesn't prevent a recurrence?

 

My second bout with shingles affected me much differently than the first and dramatically affected my life. 

 

Ever positive and perky, even I had come to believe that, “living with any chronic illness is just a matter of a) putting a smile on your face, b) having a positive attitude, and 3) being grateful for all the good things in your life.” Although those things are extremely important, the real truth is, it’s not that simple.  For me, and I believe for most of the people living with a chronic illness, life is a delicate balancing act.  Any event or circumstance can tip the balance and toss us into a deep, dark hole.

 

In late October, shingles threw me into that hole.  I completely fell apart physically and emotionally. I was too ill and too exhausted to keep up being positive and perky.  

 

My husband David and I are still dealing with a continuum of issues, trying to manage my multiple sclerosis, shingles, depression, and my inability to sleep. For me, the skin discomfort and not being able to sleep for days caused a severe emotional meltdown and l ended up checking myself into the psych ward at Meriter Hospital. 

 

It was the best thing I/we could have done under the circumstances.  Dave and I had never been through such a difficult time and the very dark thoughts I was having were hard for me to control.  Once I was in the hospital, I was given medication that allowed me to sleep and then begin to regain perspective.

 

I’m still very fragile emotionally.  Lack of sleep and fighting depression are my biggest challenges. I've always seemed to have the inner resources to pull myself back together, but this time it's been more difficult. Think: Humpty-Dumpty in a million pieces.  (Putting me back together is taking more time and effort.) I’ve begun to heal but my energy level still depletes quickly. I find myself enjoying the silence and peace of just being. 

 

I continue to receive good medical care, and I know that this will pass and eventually, I’ll rejoin my active, busy lifestyle.  I look forward to that time. So, please keep your positive thoughts and prayers coming my way.

 

Thank you for sharing in my private journey.  Writing about my thoughts and feelings has been part of the healing process.  Please feel free to share with me your experiences, too.

By Shelley Peterman Schwarz on Saturday, August 10, 2013

A recent post on the National MS (Multiple Sclerosis) Society LinkedIn site asked this question: Have any of you who are diagnosed with MS had your dental fillings containing mercury (mercury amalgam fillings) removed?


I was reluctant to answer this question, because, yes, 22 years ago I had my "silver" fillings taken out.  And, I believe it stopped the progression of my MS.  However, I want to state that this is an unproven treatment for MS (or for any other disease.)  And, I am not recommending you have your silver fillings out; I just want to share with you my experience with this “treatment.”

 

In 1979, I was diagnosed with primary progressive multiple sclerosis. I lost abilities every single day for 11½ years. As you can imagine it was a very, very scary time. I had two young children, a 10-year-old marriage, and I felt like I was dying a little every day.

 

Over the years, I had tried every available “treatment”  to halt the progression of my MS including intravenous methylprednisolone, ACTH, megadoses of oral prednisone, hyperbaric oxygen, plasmapheresis in a National Institutes Health funded study (where I received the real treatment), chemotherapy, acupuncture, different diets, meditation, bee stings, magnets... even bleaching my food to remove toxins. Nothing worked. My downward spiral continued.

 

Then, one night my husband, daughter (then 16), son (then 14), and I were watching a segment on 60 Minutes about people with MS who had improved when their silver fillings were taken out.  The kids wanted to know if I had had my fillings removed. I said," No. This has never been scientifically proven to help people with MS. Besides, dentists have been putting in mercury amalgam fillings for 150 years and yet not that many people get diagnosed with MS."

 

The kids literally begged me to try one more thing. If indeed, I was going to succumb to this illness, I didn't want them to think that I hadn't tried absolutely everything to save my life. We agreed to use the money we had saved for one last family trip to have my fillings removed.

 

I asked a dentist (who was also a friend), if he would remove the 16 fillings that I had in my mouth since childhood. He was reluctant to do so and asked me sign a form indicating that he was doing this solely at my request. He did not want to jeopardize his standing in the American Dental Association. So, over the next three months, I had all my fillings taken out. The dentist was careful to put a "dam" in my mouth to avoid my ingesting any of the mercury.

 

I had no expectations whatsoever. Why would I? Everything I tried to this point, proved to be a major disappointment. 

 

You can only imagine my surprise when little by little, I began feeling a bit more alert with more energy. Before having my fillings taken out, I needed a two hour nap after getting dressed (which required help from my husband.)   I had been living on prednisone for more than 9 years and was taking ibuprofen every four hours for discomfort.  I was soon able to get off prednisone and stop the ibuprofen altogether.

 

Although I am still severely disabled, since the removal of the fillings, I have not gotten any worse, which is an absolute miracle! Having a chronic, progressively disabling illness that has no cure can be extremely difficult to live with, but it's easier to manage if it's stable.  Today I am able to live a happy life despite all the challenges. It's all about keeping hope alive. And I, for one, could not live without hope.

By Shelley Peterman Schwarz on Tuesday, June 25, 2013

Wisconsin State Journal newspaper logoWe recently lost a beloved and important family member -- “our" dog Chueco (pronounced “Schway-Ko”; Spanish for “a little off kilter.”)  As often happens when we lose someone we love, we find comfort in remembering the good times. One of my favorite memories of Chueco was the time I took him to a “pet psychic.”  After all, haven’t you ever said, “I wonder what my pet is thinking?"  I thought maybe going to see a pet psychic would be a chance for me to find out what Chueco was thinking.

 

I probably should explain that I'm not really a pet lover.  I’ve never had a dog, cat, bird or fish of my own.  Chueco wasn’t even my dog.  When I took him to the pet psychic, Chueco really belonged to my 27 year-old son, Andrew who adopted Chueco four years earlier when Andrew was a Peace Corps volunteer in the Dominican Republic. Chueco was a mutt-puppy; a mixture of who-knows-what who was trying to find his way in the world.  My son and Chueco bonded heart and soul; both depended on the other for survival.  I credit Chueco with keeping my son company in his remote and isolated village where he lived for more than two years.  It was a difficult time for my son, made easier by this easy going, wonderful, loyal, dog.

 

So what did the psychic say?  At first, I thought her words were pretty general and could have applied to anyone’s animal.  But upon further scrutiny, well… you be the judge.  The psychic’s words are in italics.

 

Chueco knows he’s on vacation with you. (This was true. Chueco was temporarily staying with my husband Dave and me. After the Peace Corps, Andrew left Chueco with us for 6 months while he backpacked through South America.)

 

He likes you alright but he thinks your foods and the smells in your house are very strange. Considering I told her that Chueco was from the Dominican Republic, this was not what one would consider “psychic information.” However, my husband and I cook interesting meals and my husband was always putting drippings and scraps into Chueco’s bowl “to make his dog food more interesting.”   These scraps included leftover curried chicken, wild rice with saffron, vegetables and tofu with Thai peanut sauce, red cabbage with apples and wine, etc., These were regular fare in Chueco’s bowl.

 

Another psychic observation: Your son and Chueco have a strong bond and he really misses your son. Chueco is saying, “Enough already. It’s time for Andrew to come home NOW!” 

 

Andrew had been gone for 3½ months and was scheduled to return in a few months so the psychic’s words did not make much of an impression – until I got home. When I open up my E-mail, the first message was from Andrew.  He was cutting his trip short and coming home 2 months early! He missed Chueco!  It hit me as a little eerie especially after the psychic's words earlier in the day.

 

However, the best part of the psychic’s visit was that Chueco and I got closer.  I know it sounds funny, but it was true.  Chueco has always been a “guy’s dog," responding more to Dave than to me. Chueco rarely paid attention to women.  In fact, he could be rather haughty and distant where women were concerned.  Whenever I tried to approach Chueco in my three wheeled scooter wheelchair, he always moved away and out of my reach.  Yet after the visit to the psychic, Chueco let me pet him and scratch his back. He even found a place in my office where he could lie during the work day and be close to me.  There was a complete change in our relationship. He became my dog, too, not just Dave’s.

 

Do I think the psychic really talked to or for Chueco? Who knows? But you have to admit it’s a fun story and a cute memory of a wonderful dog.  Rest in Peace, Chueco.

By Shelley Peterman Schwarz on Wednesday, March 20, 2013
In the next few days, we will be updating our blog technology to bring you more pictures, videos and content.  Stay tuned... In the meantime, please follow me on Twitter: ShelleyPSchwarz or on Facebook: Shelley Peterman Schwarz
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 Monday, February 18, 2013

Wisconsin State Journal newspaper logoAt this time of year, I'm always at risk of the getting a bad case of the "Winter Blahs." In Wisconsin, we are not even half-way through the winter and the overcast skies, frigid temperatures, and cooped up feelings of "cabin fever" has everyone feeling "Blah."

 

This is when I take out my list of "Take care of Shelley" ideas.  I have learned that if I don't take care of me, I run the risk of my "bad mood" irritating and alienating the people I love. And, I'm always happier (and healthier) when I do something nice for myself. Here's my list...

 

Do ...

 


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 Wednesday, February 06, 2013

Shelley in her office

Life changes forever when you are diagnosed with  a chronic illness. I never intended to be a writer.  When I became disabled with multiple sclerosis (MS), I had to retire from teaching, a career I loved.  Giving up my career was emotionally devastating.  A lot of my personal worth was tied up in my work. As time passed and my physical abilities decreased, there was less and less I could do to fill my days so I began writing using an electronic typewriter.

 

The Tips for Making Life  Easier column


I thought what I learned from becoming disabled might help other people.  So I wrote an article in 1987 on how to streamline getting ready for the holidays and submitted it to the local newspaper, the Wisconsin State Journal.  To my great surprise, the article was published.  About three weeks later, the editor called and asked if I would write an article on grocery shopping tips for people with disabilities. 

 

For the next year or so, I periodically submitted ...

 

By Shelley Peterman Schwarz on Tuesday, February 05, 2013

Capital Newspapers logoA writer for The Capital Times newspaper,  Debra Carr-Elsing wrote this (wonderful) article about my book, Memory Tips for Making Life Easier. 

 

Memory Tips book cover

Although edited for space, the article shares tips and strategies from the book along with my philosophy for living life with a chronic illness:

 

 

 

 

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 Thursday, January 31, 2013

Shelley at her deskHi Shelley! This is Morgan, from…  I have now moved to St. Louis, but I have so wanted to contact you. I have fibromyalgia, and I get so tired of the daily pain and fatigue.  Then there's the other chronic illnesses I have on top of it, and I'm getting bouts of pneumonia about every 5 months that further bring me down. I get so discouraged that I often wonder if I can go on. So I hope we can email. I'm looking for some sense of hope. I've lost all the hope I had. I need help.

 

Dear Morgan, 

 

Thank you for writing to me.  Your heartfelt words reminded me of those hopeless, dark, and sad days I had long ago.  I wondered if the struggle was worth it.  Many, many, many days all I could think about was ending it.  It is soooooooooooooooo hard to...

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 Thursday, January 24, 2013

Shelley headshotWhy is accepting our chronic illness so difficult?  I know that in 1969, Elisabeth Kübler-Ross described the 5 Stages of Grief, (denial, anger, bargaining, depression, and acceptance) in her book, "On Death and Dying."  I could understand each of the stages because I certainly experienced all of them. But the final stage, ACCEPTANCE, was illusive for me.  Why was it so difficult to "figure it out" and answer that question?  Why is ACCEPTANCE so difficult?

 

Watch this video to learn ...

By Shelley Peterman Schwarz on Wednesday, January 23, 2013

Happy faceNorman Cousins once said, “Laughter is inner jogging.”   Funny situations and circumstances are all around us.

 

Once I was explaining to my son’s friend that I used to be right handed but was now left handed because of my disability. Excitedly he said, “I know. That means - you’re amphibious!”

 

Self-deprecating humor or laughing at oneself is another way of bringing laughter into your life....

By Shelley Peterman Schwarz on Monday, January 21, 2013
Wisconsin State Journal newspaper logoA couple of weeks ago, I received an email from my friend, Jodi. She wrote that she had slipped on the ice, taken a bad fall, and broken her leg. When I called to find out what happened, one of the first things she said was, “This has been a very humbling experience. I thought I understood what people with mobility issues go through because of my friendship with you, but I see now that I really had NO IDEA.” 

 

My mother who has been with me on every step of my 30+ year journey living with multiple sclerosis, expressed the same sentiment when she broke her ankle a few years ago. Often friends and family members say the same thing to me after they’ve had an illness, surgery, injury, or accident, especially if the situation required a period of recuperation or rehabilitation. They are surprised at how difficult and exhausting it can be to complete simple everyday activities, like making a cup of tea, getting out of bed, or fixing themselves something to eat.

 

It’s true. Only someone who

By Shelley Peterman Schwarz on Thursday, January 17, 2013

Shelley at her deskEvery weekend, I hear from people who tell me how difficult it is getting through ANOTHER flare-up of their chronic illness. It gets tiring, frustrating, and scary when the rug keeps getting pulled out from underneath you.

 

When I get down, scared, and frustrated, I ...

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 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 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 Wednesday, December 19, 2012

A reader asked me about Botox injections. She wondered if I had used them for multiple sclerosis (MS) spasms. 

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 Thursday, December 06, 2012

Shelley putting on earrings

I did it all by myself!!! I put on my pierced earrings without any help!!! I can't believe it. Considering my right hand used to be contracted in a fist and I couldn't lift my arm/hand up to my face, the ability to put on a front and back independently is a HUGE ACCOMPLISHMENT! After 25 years of disability, how can this happen?

 

By Shelley Peterman Schwarz on Thursday, November 29, 2012

Shelley and her mom

My mother recently broke her ankle in a fall. As a very active and independent eighty-something, she’s not used to staying home and taking life in the slow lane. Her busy life has been interrupted and she said to me, “Everything (getting dressed, straightening up the house, making meals, etc.) takes so much longer.  After watching you cope with your disabilities (as a result of multiple sclerosis), I thought I knew what you were going through. But, I really had NO IDEA!”

 

I think it’s true, unless you walk in someone else’s shoes you can’t know what they’re going through.  So my holiday wish for you is that you are patient with yourself and with others; that you take time to appreciate the gifts and talents you do have, and that you be more accepting and understanding of our individual differences.  

 

By Shelley Peterman Schwarz on Tuesday, November 27, 2012

National Multiple Sclerosis SocietyA reader writes:  "I'm feeling sad all the time because of my advancing multiple sclerosis (MS), and think a psychiatrist could help me with my feelings of despair.  I've never seen a psychiatrist before and don't know how to find one.  Any suggestions?"

 

I wrote back ...

Thank you for writing to me.  I'm sorry to hear about your depression but applaud your efforts to take responsibility for your own healthcare.  You are wise to seek professional help to deal with your MS.  (I think it's the only way to survive this illness.) 

 

Your question as to how to locate a psychiatrist specializing in MS has a couple of options:

 

By Shelley Peterman Schwarz on Wednesday, November 14, 2012

Two young children "Trick or Treating"On Halloween night, my husband and I took turns answering the door and dropping candy bars in the containers the little ones were carrying. When it was my turn at the door, one inquisitive little 3-year-old blurted out, "Why are you in that thing?" She was, of course, referring to my wonderful, little 3-wheeled Amigo™ scooter.

 

I am used to children and their innocent questions about my "means of transportation." I quickly answered, "I use this wheelchair because my legs aren't strong and I can't walk.  The scooter wheelchair helps me get around."

 

Shelley & her granddaughter on her lap

 The little girl was satisfied with my answer and her father, who was standing in the background, looked very relieved.  I'm glad I had a minute to answer the little girl.  I don't always, because parents...


By Shelley Peterman Schwarz on Thursday, November 08, 2012

Question markWhen you live with a chronic progressive illness there are lots of unknowns, like; how fast will the disease progress?  How disabled will I become?  And, how will I manage if I become disabled?  There are very few things, if any, that you can predict about your future.   At least, that’s been my experience.

   

However, there is one thing that I do know for sure.  It’s this: When you ask for help, someone will be there to help you...

By Shelley Peterman Schwarz on Wednesday, November 07, 2012
Shelley's photoEvery 8 seconds a Baby Boomer turns 65 and last year, I joined “The Club.” For weeks before and after my special day, I couldn't stop thinking about the number 65 and how I used to think it was OLD. How could I be 65 when I only feel 39? And, the first time I had to check the last box (65-older) on a questionnaire, it made me realize that the world now saw me as a senior citizen.

 

Perhaps it’s "joining the club," dealing with short days with cold temperatures, and/or approaching the upcoming holidays, (or perhaps a combination of all of these), that have made me reflect on what I’ve learned in my first 65 years.

 

So, in no particular order, here are my thoughts and words of wisdom:

 

  • Have low expectations. Keep your expectations low and you won't be disappointed. Events, reunions, celebrations, even people may not live up to your expectations. Accept what is. The faster you do, the happier you’ll be...
By Shelley Peterman Schwarz on Wednesday, October 31, 2012

I had one of those melancholy, out-of-sorts, “down” days yesterday when I just couldn’t get out of first gear.  FoJordan with her Teddyrtunately, I had nothing pressing so I started my day with a two-hour nap. But even that did not perk me up. I felt like a whiny child who just didn't feel good.

 Jordan & Matt with their "teddies."

And then I remembered the pictures that I took of my grandchildren.  With thumbs in mouths and  “teddies” cuddled close, ...

By Shelley Peterman Schwarz on Monday, October 29, 2012

Wisconsin State Journal newspaper logoRoutine, structure, and organization, keep my life balanced and as stress-free as possible.  Very little is left to chance and I know it's one way that I've been able to manage living with MS these 30+ years. But, having the interior of our house painted was an overwhelming and daunting task. Taking down pictures and wall hangings, moving furniture and computer equipment, emptying shelves, removing drapes and window coverings - well, you get the idea.  It all made me nauseous and anxious.

 

How in the world could my husband, a real NEAT-NICK, manage the chaos and inconvenience?  I also worried how would I rest when I needed to, eat properly, or react to the fumes of house paint, let alone maneuver around a house with people and "their stuff" all over the place. 

 

 

Read how it all came together and see the "after" pictures.

By Shelley Peterman Schwarz on Thursday, October 25, 2012

NatureBright SAD lightFall is in the air and my spirits are falling by the day. The reduced sunshine and rainy and overcast skies have me sleeping and lethargic all day long.  All I want to do is to crawl in bed and close my eyes to the world. 

 

Take out the SAD (seasonal affective disorder) light, Shelley, and let the light, "light up your life"...

By Shelley Peterman Schwarz on Tuesday, October 16, 2012
Shelley riding a horseIt is easy to stay home when you have a chronic illness. I was a master at making excuses for not going out -­‐ it’s too hot, too cold, too far away, too much walking, too noisy, etc. My favorite was “no one will miss me.”

 

People who don’t have a chronic illness don’t realize what an effort it takes for someone with a chronic illness to go out. I'm lucky that my husband and care partner knows that if I stay in the house too long, I get sad and depressed so he pushes me a little.

 

But my husband isn’t always around to take me out. When I gave up driving,...
By Shelley Peterman Schwarz on Tuesday, October 02, 2012

Shelley with her psychic  My psychic adviser, Kathleen

 

When I went to the psychic on a lark, I asked, "What should I do with the rest of my life?"

 

"Write! You're going to write," was her immediate response. I was speechless. I was 35 and had just retired from my position as a teacher of the Deaf. The disabling effects of my chronic illness had made it impossible for me to continue to teach.

 

Me? A writer? RIDICULOUS! I had never written anything more creative than, “Please excuse Jamie from school on Monday. She had a sore throat.”

 

It was interesting that the psychic should mention writing because...

By Shelley Peterman Schwarz on Monday, October 01, 2012

Wisconsin State Journal logoA few years ago, I came down with Shingles (herpes zostra.)  Fortunately, it remained a very mild case because I was treated early which is very important with Shingles. My only real complaint was that the medication I needed to take made me rather mushy-headed. I felt like my head was a balloon that bobbled and floated high above my body.  It was hard to put two thoughts together, find the right word, or remember what I had said. 

 

When I asked my husband to, "please pass the envelope," when I really meant to say "salt shaker," I realized that my experience was nothing new to people who have had a stroke, brain injury, Fibromyalgia, Parkinson's disease, multiple sclerosis, Alzheimer's disease or other word/memory retrieval conditions.

 

I knew my memory problems were temporary; however, for those of you who may be dealing with more permanent memory loss, (like those associated with dementia and Alzheimer's disease), perhaps these tips and suggestions from my book, Memory: Tips for Making Life Easier will help you.

 

By Shelley Peterman Schwarz on Thursday, September 27, 2012

Many years ago I did something that literally halted the progression of my primary progressive MS.  I don't usually share that information with people because what I did was not considered a bonafide treatment for multiple sclerosis and it was quite costly.  The other reason that I rarely share this information is because I know people who did the same thing I did and obtained no benefit after spending (wasting) a lot of money.

 

But it's been more than 20 years since the day I made the decision and my level of disability has not gotten worse.  Yes, I'm still severely disabled but it's easier to live each day knowing that I won't be worse than I was the day before.

 

To read what I did and what I do now to make my life with MS better, ...

By Shelley Peterman Schwarz on Tuesday, September 25, 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, a brain injury, arthritis, 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.

                 Shelley in bed. Nurse taking her temperature 

 

When I found my world shrinking, I pushed myself to...

By Shelley Peterman Schwarz on Thursday, September 20, 2012
  I love going to the Apple Store at the mall and learning new things, but the noise in the store is way too loud for good concentration.  Last week, I went to the Apple Store and my "genius" for that day brought out a headset for me to use to edit the video sound track I was working on.  OMG!!!  What a difference in my ability to concentrate while I was 
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 Wednesday, September 12, 2012

Wisconsin Woman article with family pictureI was going through some files in my office this past weekend and found the following article that was written about me nearly 10 years ago by Teresa Peneguy Paprock for Wisconsin Woman magazine.  Not much has changed since that article was written, except my age. And, surprising as it may seem, it was comforting to read that I’m still “hanging in there” until a treatment/cure is found for people with primary progressive MS.  By taking it a day at a time, the future with MS doesn’t feel quite so scary.  My goal is still to help people look with hope to the future.  Here's the article:

 

Imagine, for a moment, that someone told you that you would lose the ability to use your hands.  Or, maybe your legs.  Maybe you would go blind, or have problems swallowing, or lose control of your bowels.  You wouldn’t know when it would happen—it could be months from now, or it could be tomorrow.  You wouldn’t know if the problem would be permanent, or would come and go.  If you can imagine this, you have an idea of what it’s like to receive a diagnosis of multiple sclerosis (MS).

 

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 Wednesday, September 05, 2012

Can you ever be happy again after you’ve been diagnosed with an incurable, progressive illness like, Multiple Sclerosis (MS), Parkinson’s disease, some types of cancer? I’d like to think you can.  For me, the answer was accepting that I deserved to be happy and, understanding that it was up to ME to make myself happy.  

 

A parenting story I had written filled five pages in the National Multiple Sclerosis Society magazine, Inside MS.  Our family picture graced the cover!  I was thrilled!  But my family’s reaction was less than enthusiastic, making me feel great disappointment and frustration with them.

                              Cover of InSide MS
 

My husband remarked, “You said our picture might be on the cover.  You didn’t say we’d be the cover!”  Our 16-year old daughter was...

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 Wednesday, August 29, 2012

Life is full of compromises. But I wasn’t interested. I was angry, stubborn and I was not going to give in to my chronic illness! I was not going to use a #!%#&!# wheelchair! I wasn’t going to be one of “those people.” Does that sound familiar? Whether it’s for hearing, visual, or other assistive devices, it’s not easy to accept help no matter how old you are.

                       

I remember when my father‐in‐law, who was in his 70s and had Parkinson’s disease, refused to use a wheelchair when we went to the National Aquarium in Baltimore, Maryland...
By Shelley Peterman Schwarz on Tuesday, August 28, 2012
I used to think that life was about giving to and doing for others. It wasn’t until I was “in a wheelchair with one hand tied behind my back” (i.e. severely disabled) that I realized that it's relationships and our ability to connect with those we love and care about that gives our life meaning.

 

Right before my father passed away, he told me that one of the reasons he fell in love with my mother was because she was such a good listener. Looking back, I now understand that I learned how to be a good listener from my mother.

 

                                  

 

In fact, my family always teases me because I had an uncanny way of connecting with...

By Shelley Peterman Schwarz on Monday, August 27, 2012

This month I “celebrate” the anniversary of my life with chronic illness. “Celebrated” seems like a strange word to use around an illness that has left me with only limited use of my left hand. Yet, it’s true. I do celebrate my life, limitations and all. So how does one come to this level of acceptance? As you might guess, it was not easy and it did not happen overnight.

 


Whether it was a small loss like not being able to braid my daughter’s hair or a large loss like giving up driving at 39, I was in a constant state of grieving. Frustrated by my lack of control, I was petrified...
By Shelley Peterman Schwarz on Tuesday, August 21, 2012

Every day is a challenge for me and I have to find new ways to motivate myself.  Sometimes the right quote helps me get my head on straight.  My favorite is "Life doesn't have to be perfect to be wonderful."  Annette Funicello, the former Mouseketeer, said that.  Although she is severely disabled because of multiple sclerosis, she still has this attitude.  Her words help me deal with my problems and encourage me to look for the good  things in my life.


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 Wednesday, August 08, 2012

A few months ago, we relaunched www.MakingLifeEasier.com, a completely redesigned and content-rich Website. It was a labor of love and I send sincere thanks to Deborah, my able assistant, and Robyn and Stan Kitson of Kitson Marketing and IntimeTools. This project could never have been done without their help and guidance.

 

Personally, I’m extremely happy about the redesign because I am now able to post new content myself.  I’m EMPOWERED!  Rather than waiting until someone else has time to post my blog entries and other Website content, I CAN DO IT MYSELF!  Being severely limited physically...

By Shelley Peterman Schwarz on Wednesday, August 01, 2012

I've had MS for 33 years and didn't reach out to support groups or organizations for the first 10 years of my diagnosis.  I was in serious denial!!! Even though I was in a wheelchair, I wasn't like THOSE people. That attitude was a big mistake on my part. 

 

Today, the more mature me, applauds anyone who takes in their diagnosis and begins to ...

By Shelley Peterman Schwarz on Tuesday, July 31, 2012

Over the years, I’ve been asked many philosophical questions relating to how I’ve been able to live with all my limitations and still go on and live a happy life. For the people who are close to me, my family, friends, and the community of people who are in my life, I think they would agree that I work at being happy and upbeat. It’s not always easy to face each day with hope and anticipation, but it is a choice I try to make each day. So, what are those difficult questions that have taken me years to answer? 

 

#1: How do you keep such a positive attitude?


#2: Is MS a blessing?

 

#3: Why can't my mother, brother... be like you?

By Shelley Peterman Schwarz on Thursday, July 26, 2012

I think when you have a chronic illness you never know what kind of day it's going to be. Everyday is up for grabs and it's easy to play "head games," with negative self-talk.  I know I do.  Sometimes, even before I'm even out of bed, I'm thinking, "Shelley. you're probably gonna have trouble getting out of bed today, (or on the commode, or any of a dozen other tasks.)"

 



However, since I started focusing on...
By Shelley Peterman Schwarz on Thursday, July 19, 2012

My massage therapist, EllenOne of the best treats for me is to have a massage.  I feel so pampered and taken care of.  I truly relax and let my worries take a vacation for an hour or so, as I drift into LA LA Land. 

 

When I first started getting massages, it was too taxing to go out and get them.  The act of undressing, then getting re-dressed, even...

By Shelley Peterman Schwarz on Wednesday, July 18, 2012
Trevis Gleason who writes the Life with MS blog for Everyday Health  asked readers to fill in the blanks to "Multiple sclerosis makes my [Blank] feel like [Blank]."  Anyone living with a chronic illness could fill in these blanks.

 

Here's what I wrote:
My MS often makes my...
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, July 12, 2012
I'm feeling a little better (not as "draggy" or mentally foggy), this week than I did last week and I think a lot has to do with the fact that the temperatures have only been in the 80's, not in the high 90's and 100's.  Even though I have stayed in my home most days with the air conditioner on, it seems like the air quality outside still has an adverse affect on me inside.  It's like thick air that takes more effort to breathe.


I wish I could...
By Shelley Peterman Schwarz on Wednesday, June 27, 2012

I recently connected with Larry Jenkins on LinkedIn who sent me this message, “You were an inspiration to us as my late wife battled (multiple sclerosis) MS.”

 

My heart hurt that another person has lost the battle with this debilitating disease.  Although MS is not a fatal disease in itself, it can weaken other bodily functions and leave it vulnerable to other fatal conditions.

 

I am so sorry for his loss and that’s why tomorrow...

By Shelley Peterman Schwarz on Thursday, June 21, 2012

I was so excited and had anticipated that this would be a wonderful family bonding experience that there was a great risk that the event could fall flat at best and end in anger and frustration at worst.  After all, these reunions with adult children, their spouses and children means lots of "family dynamics" and requires lots of well-developed interpersonal skills.  So, I am profoundly grateful that this camping experience was a positive experience for everyone concerned.  It was a dream come true for me, with insights and wisdom gained.

 

 

As I watched the adults packing/unpacking, preparing and cooking meals, cleaning up and doing everything else involved in a successful camping experience, I ...

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 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 Tuesday, June 12, 2012
I can't believe it!  A minute ago, I thought I had everything ready for this upcoming family reunion.  Now I learn that I have one more problem to solve  -  and quickly! Son, Andrew, and his 5 year old daughter are flying in tonight and Andrew just called to tell me that we'll need a booster seat for the car when we pick them up at the airport. (I thought Andrew was bringing a carseat with him.)

I had no idea where I would find one because ...

By Shelley Peterman Schwarz on Thursday, June 07, 2012

Tonight I spoke with the husband of one of my oldest childhood friends. She wasn't home so I took the opportunity to ask him how he was doing. A physician, (M.) had just retired because of the effects of a progressively disabling form of muscular dystrophy.  It was not the way he wanted to end his career, especially since he had just been voted by his peers as one of the best doctors in his community.

 

But M. had fallen a few times in the hospital and ...

By Shelley Peterman Schwarz on Wednesday, June 06, 2012

When I’m engaged in activities I enjoy, I totally forget my problems and limitations.  My newest fun activity is blogging, posting, and adding and editing photos and digital movies. Learning new technology is a creative outlet for me.


 

But it’s not been easy and I’ve been back to the Apple store every week, most times sheepishly asking the (young) Apple Genius’s to repeat what they taught me the week before...

By Shelley Peterman Schwarz on Thursday, May 24, 2012

When you have a chronic illness or disability, life is full of compromises, or as one of  my co-workers liked to say, “a constant cost-benefit analysis.” But it took me awhile to learn that.



When I was first diagnosed with MS, I wasn’t interested in compromise. I was angry, stubborn, and was just not going to give in to my chronic illness! I was not going to use a #!%#&!# wheelchair! I wasn’t going to be one of “those people!” Does that sound familiar? Whether it’s a wheelchair, cane, walker, or other assistive device, it’s not easy to accept help no matter how old you are...


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 Friday, May 18, 2012
I haven't driven a car since September, 1985.  At first, it was actually a relief when I gave up driving because I felt unsafe behind the wheel. And, being responsible for transporting two young children, it seemed a no-brainer to stop driving.

 

However, the reality of giving up my driver’s license meant I had to rely on other people for everything-- going to the grocery store, carpooling, shopping, haircuts, doctors’ appointments, and errands of all sorts. That's a lot of trips! 

 

         

 

After 27 years, I've gotten used to not being able to drive. 

 

 

 

By Shelley Peterman Schwarz on Wednesday, May 16, 2012

Having trouble moving as fast as you used to, giving up a favorite activity like doing needle work or using a handicapped parking placard when you shop are not particularly funny. However, putting a humorous spin on everyday observations and situations diffuses the tension and puts your problems in perspective.

         

I definitely don't like it when I have to be carried into or out of an inaccessible location. However, ...

By Shelley Peterman Schwarz on Tuesday, May 08, 2012

   Christopher Tin, Composer

Every now and then a beautiful piece of music touches my heart and I have to listen to it over and over again.  Beautiful music has the power to transport me away from the everyday realities of living with my  chronic illness, multiple sclerosis. Today, while I was "horizontal," (i.e. in bed and off my bottom), I busied myself on the computer and stumbled on the Baba Yetu music video...

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 Tuesday, May 01, 2012

 

Last month, I was in New York to receive the New York City/Southern New York Chapter of the National MS Society's MS Awareness Award for my new book, Home Accessibility: 300 Tips for Making Life Easier.

 

The morning after the Awards, I attended an event, a Flash Freeze, in Union Square Park to draw attention to and publicize National MS Awareness week.  After the event,  I visited the New York City/Southern New York Chapter, which shares space with the National office of the National MS Society, (NMSS.) 

 

As I tootled down one of the hallways, I saw that the door was open to Cyndi Zagieboylo's office.  She is the new President and CEO of the NMSS.  Not wanting to disturb her on this busy...

By Shelley Peterman Schwarz on Friday, April 27, 2012

Today, I received a beautiful email from a “very busy woman” who, just that day, had been diagnosed with MS.  She wrote that as she left the neurologist’s office, she saw a copy of my book, Multiple Sclerosis: 300 Tips for Making Life Easier.  After paging through the book, she asked the receptionist if she could purchase a copy. The receptionist told her she could borrow it and return it on a subsequent visit.

 

When she got home and looked through the book a bit more carefully she decided to write to me to thank me.

By Shelley Peterman Schwarz on Wednesday, March 21, 2012

Nothing definite on the electric wheelchair yet, but I believe one is in my future. There are more options for improved seating and trunk support with an electric wheelchair than there are with my wonderful little Amigo, a three-wheeled scooter.

 

At first, I was more than a little bummed out about having to use an electric wheelchair NOW, especially after I've gained so much strength and independence...

By Shelley Peterman Schwarz on Sunday, February 05, 2012
Last December, we went to visit my brother in Las Vegas and before we left Madison we had our first travel-related "issue." Here's what happened...

Dave dropped me off at the door to the airport and went and parked the car. While I was waiting for him, I decided to get out my photo ID, but I couldn't find it. I PANICKED! Dave would kill me if I forgot my ID.

I searched every pocket and section of my purse but it wasn't there. I must have looked stressed because a police officer stationed in the airport came over and asked me if everything was all right. I told him I didn't have my photo ID. Would I be able to go through security without it?  We did not have enough time to drive back home to get it.myself.
By Shelley Peterman Schwarz on Monday, January 30, 2012

In the last few weeks a really gross “wart” grew on the back of my calf. I thought it was caused by an irritation from my very tight compression socks. Dave and I both thought it was a wart so I started treating it with ...

By Shelley Peterman Schwarz on Tuesday, January 03, 2012

Dave is at a University of Wisconsin Badgers basketball game and I'm in bed with the computer. After all the travel and (wonderful, but exhausting) chaos of the holidays, I'm loving the silence. The only "noise" is the quiet clicking of the computer keyboard.

My brain desperately needs the peace and quiet...

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 Monday, September 05, 2011
Today, I read a Facebook message from a young woman (21) who was slowly losing feeling in her hands and was worried about the future.  It instantly took me back to when I was 32 and losing physical abilities EVERY DAY. I cried myself to sleep every night because I was worried about the future. This went on for...
By Shelley Peterman Schwarz on Sunday, September 04, 2011

Dave and Mom looked at my pressure ulcer today and could still see a "shadow," so I know it's not healed yet. And, even with the new seat cushion, I can still feel a tender area after I'm up for 45 minutes. So, again I'm saying,

By Shelley Peterman Schwarz on Wednesday, August 10, 2011

My son, daughter-in-law, and their children (4 and 19 mos.) are coming for a visit and I can hardly wait! Since they live in California 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 ...

By Shelley Peterman Schwarz on Tuesday, August 02, 2011

Today was a day I will never forget. I was in bed after lunch and alone in the house when I felt the urge to use the bathroom. No one was here to help me and I knew that if I called someone to come and help me out of bed, by the time they got here it would be too late… shades of the days before I could use the bathroom independently.

 

How many times did I have to call David back home as he drove out of our subdivision? How many times did he have to hurry home from work, (oh horrors of horrors), to clean me up because I didn’t get to the toilet in time?

By Shelley Peterman Schwarz on Monday, August 01, 2011
I think things are starting to improve.  Thankfully, I'm not in any pain. Unfortunately, I'm preparing myself for another week or two in bed. My appointment with the wound clinic is August 12th. I sure hope they can x-ray or MRI or something to determine how "healed" I am.

 

Because I’m “homebound,” I decided to

By Shelley Peterman Schwarz on Tuesday, July 05, 2011

I'm horizontal again and am spending my time in bed trying to learn more about “pressure ulcers.” I tried to make an appointment with my dermatologist but she’s on an indefinite medical leave, so I decided to wait to until next week when I see my internist for my annual physical. Hopefully, he’ll be able to identify whether or not I have a “pressure ulcer” or something else.

 

My assistant, Deborah was supposed to be here this morning but she was up until 2 AM proofreading, Home Accessibility: 300 Tips for Making Life Easier book. So when she called me this morning – exhausted - I told her...

By Shelley Peterman Schwarz on Sunday, July 03, 2011

I'm still in bed and this problem on my bottom has clipped my wings and restricted my life. I'm NOT HAPPY!!!!  My idea of being up for an hour or two and then in bed for two or three hours is not working. The spot has not gotten any better. It may even be worse because now the “pinch” feels like pins and needles.

 

I know I brought this situation on myself because...
By Shelley Peterman Schwarz on Sunday, June 19, 2011
I'm lying in bed again because the irritation on my bottom from sitting too much has been bothering me.  As embarrassing as it was, I asked Dave to look at it and he confirmed that there was a red area.

 

Since I have normal feeling everywhere, this little spot feels like an uncomfortable pinch. I've never had an issue like this before, so...

By Shelley Peterman Schwarz on Friday, June 17, 2011

In May, I gave the closing keynote at a conference of Wisconsin vocational rehabilitation counselors and other professionals who help people with disabilities reach their employment goals. Today, I received the feedback summary from the meeting planner.  I loved reading the attendees words.

 

Of course, I read, with special interest, the ...

By Shelley Peterman Schwarz on Sunday, June 12, 2011

For probably a year now, I felt a little tender spot where I sit. I've ignored it because I wanted my life to be on my terms - under my control. But I have this nagging feeling that

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