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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 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, January 15, 2013

Shelley at her deskAmy, a young woman, emailed me a question about whether or not I had had experience taking any of the disease modifying drugs for my multiple sclerosis.  I wrote back...

 

Thank you for writing to me. I'm sorry that you were diagnosed with MS.  As I know only too well, it can be a scary and traumatic time for you and your family members.  I think I have a little understanding of your situation because I was also a young mother with a 3 and 5 year old, when I was diagnosed.  My "symptoms" began shortly after my first child was born.  A diagnosis of a chronic, potentially disabling, disease like MS, rocks your world and changes your life forever.

 

Unfortunately, when I was diagnosed 30+ years ago, there were no disease-modifying drugs on the market.  And, when they did become available, I did not qualify because my diagnosis was primary progressive MS.  All the medications were only for those with the remitting/relapsing form of MS.  So, I have never taken any of the "MS drugs."

 

As you consider what you should do regarding "to take or not to take" medication, I offer the following ...

 

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 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 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 Wednesday, December 05, 2012

Ever since I was diagnosed with multiple sclerosis, family, friends, and healthcare professionals have been telling me how important it is to exercise.  Sometimes it actually felt like people were nagging me and I often thought, "You have no idea how exhausted I get just getting dressed. Even the thought of exercising, exhausts me!  I can't imagine any positive effect from exercising because I'd be in bed all the time trying to recover."

 

But times have changed and I am doing better. I have put exercise back into my daily routine. Sometimes "my exercising" is just picking up and doing things around the house. Bending, reaching, grasping, lifting, and stretching as I go through my day are "my exercises..." 

By Shelley Peterman Schwarz on Tuesday, December 04, 2012

Shelley at the reception deskToday, I had a doctor's appointment.  It's at a large clinic and there are at least 6 locations where patients can check in.  As I rolled into one of the "stations," the gal looked up at me and with a big smile on her face said, "Hi Shelley!  Nice to see you. How was your cruise?"

 

I could barely speak!  How could she...

By Shelley Peterman Schwarz on Friday, November 09, 2012

Prescription bottle labels 

Ask your pharmacist to put your medication into a bottle with a large print label.

By Shelley Peterman Schwarz on Friday, October 26, 2012

Do Not Disturb sign

When you are hospitalized, you may find that visitors stay too long.  Consider putting up a sign on the wall above your hospital bed that reads, Please limit your visit to 30 (15) minutes.  To add to its authenticity, ask the doctor sign it. 

 

You may eliminate other disruptions by...

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 Monday, October 22, 2012

Wisconsin State Journal newspaper logoWhen I was in 5th grade, we had a music teacher who came to our school for a few weeks during the school year. I vividly remember Miss Best and her pitch pipe. She asked every student to sing a familiar song; she was trying to gauge our "range." I remember her pronouncing that I was a high soprano. However, singing in that range was very uncomfortable for me.  So, gathering all my courage and going against my “goodie two-shoes” instincts, I bravely asked if I could be a middle soprano instead because it was a more comfortable range for me.


When our music lesson ended, we returned to our classroom where our teacher was waiting for us. She stood in front of the class; arms crossed across her chest, and coolly looked around before fixing her gaze on me. Puffing herself up, she chided, "Some of us think we know more than the professionals. Would you question what your doctor says? Would you challenge his authority because you know better?"

 

I froze, totally embarrassed and demoralized. I still get that sick stomach feeling whenever I think of that experience.

 

Over the years, since my diagnosis, I have replayed that script in my mind more times than I can remember. It's taken years

By Shelley Peterman Schwarz on Friday, October 12, 2012

Prescription bottles with tops

 

Opening up child-resistant caps on prescription medicine bottles can be difficult.  If this is a problem for you, ask your pharmacist to replace child-proof tops with easy opening tops. However, be especially careful with these  medications and keep them out of the reach of children and grandchildren.

By Shelley Peterman Schwarz on Thursday, October 11, 2012
I am thrilled that the colonoscopy is over and the doctor did not find any polyps.  However, the procedure took a lot out of me and I will write about the experience next week when I've recovered. Yes, I have helpful tips to share that may help you when you need a colonoscopy.
By Shelley Peterman Schwarz on Tuesday, October 09, 2012

I believe in miracles because I'm getting better, even after living with multiple sclerosis (MS) for more than 30 years.  By "getting better" I mean I'm gaining back abilities I lost at least 25 years ago.  Here are a few examples.

Miracle 1 I am typing this entry using TWO hands!!! Being a one-handed typist, never in a million years did I think I would regain enough fine motor control in my useless right hand to be able to type. It is unbelievable!!!!  My right hand was so contracted into a fist that I haven't been able to open my hand to shake someone's hands or clap my hands.

By Shelley Peterman Schwarz on Tuesday, October 09, 2012

Tomorrow I have my (4th) colonoscopy and I'm well prepared.  But it wasn't always so.  Here's the story of my first colonoscopy.

 

When I was diagnosed with multiple sclerosis (MS) in 1979, there was no way to predict that I'd have the primary progressive form and that I would become severely disabled within a few years.  Needless to say, it has changed my life dramatically. It's taken years to learn how to be my own advocate and how to "best take care of me." Here's one example:

 

In 1994, my bowel habits changed and the gastroenterologist wanted me to have a colonoscopy. I was terrified.

By Shelley Peterman Schwarz on Wednesday, October 03, 2012

Shelley in standing frameI was never into exercising. I loved the clothes, the social interaction, and the idea behind exercising; but I didn’t like to sweat. It made my hair frizz. Besides, my thinking was that if I had any energy at all, why waste it exercising? Why not do something you enjoy, like shopping?  

                                   Shelley with packages

By Shelley Peterman Schwarz on Thursday, September 06, 2012

No one was more surprised than I was when, at 32, I was diagnosed with a chronic illness. With that diagnosis, my life changed forever. I was no longer like my friends. My dreams for the future changed and my life was filled with doctor’s appointments and managing my medical care.

            Shelley with power wheelchair

I was not prepared for this new direction my life had taken. Few of us are. I kept thinking this “illness stuff” will go away. Or, that I’d take a pill or two and be fine in a few days. Over 30 years later, this “illness stuff” is still with me. The difference is I’ve learned not to let managing my healthcare overwhelm me.


In the beginning, I let my doctors...

By Shelley Peterman Schwarz on Thursday, August 30, 2012

Food PyramidI know adding more fresh fruits and vegetables to my diet is a good way of improving my nutrition without adding hollow low calories.  Because I'm sedentary, (unable to stand or walk), it's easy to put on weight.  It's a big worry for me because I am dependent on other people lifting me.  But shopping for and preparing fresh fruits and vegetable is time-consuming and requires more energy then opening up a bag of "potato" chips or dried cherries.

 

However, for me the biggest problem is at mealtime. With all the food on the table arrayed before me, it's easy to just start eating without thinking about the quantity of food I'm ingesting.  Yes, I've learned that using a smaller plate does help.  So does stopping when my body says I'm full.  (But when something tastes really good, it's hard not to have one more bite, or two more bites, or three more bites - and suddenly it's all gone.)

By Shelley Peterman Schwarz on Friday, May 04, 2012

Chronic illness seems to always translate into lots of medical appointments.  To me, one of the most frustrating problems I've faced has been with scheduling appointments and coordinating transportation. 

 

Taking "para-transit"/accessible community transportation to medical & dental appointments requires extra planning that begins when I make my appointment.  I explain to the person doing the scheduling that... 

By Shelley Peterman Schwarz on Saturday, July 02, 2011

As happy as I am to be done with the Home Accessibility: 300 Tips for Making Life Easier book, I'm a little worried that I sat up too many hours working on the book and the tender spot I feel on my bottom is more than a little minor skin the irritation.

 

For the last few days, I’ve been trying to get out of my Amigo® scooter every two hours or so to put my feet up. But, it doesn't seem to be making any difference. The spot is still tender. Since I've never had a pressure ulcer before, I'm not sure...
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