Lymphedema Association of Ontario  |  Lymphedema Matters 2020 E-Volume 

Message from President •  Challenge: Lymphedema Completed • Member Spotlight | Stories from our Members  

LYMPHEDEMA ASSOCIATION OF ONTARIO

2020 E-VOLUME 4

Message from the President

Dolores Steinwall  |  November 15th, 2020

Dear Members,

Congratulations to all the people who participated and donated to our Virtual Challenge: Lymphedema to raise funds for the Compassion and General Funds.  We met and exceeded our goal of $15,000, raising $15,851 even in these COVID times.  

The funds raised will go to:

1.    Compassion Fund – we are extending the Pilot to the end of December and also changing the process to allow each of our Member therapists to nominate a Patient.  We are pleased to report we have approved two applications for this initiative, with three applications currently pending. Please continue to submit your applications!  

2.    We will continue to provide Webinars to educate and raise awareness to the LE community.  Please join us for November 26th, for 'Living with Lymphedema: Self Care Strategies with Nidhi Gupta MA, RP, CPCC, SFT' at 2 PM. 

3.    Info-line administration.  We have been keeping track of the data for 2019 and 2020 which will allow us to analyse and create a business case to present to the Ministry of Health on behalf of patients.

4.    We are planning to launch a monthly virtual support group for Patients and invite our Member therapists to volunteer to help run the program.

We are pleased to announce that Team led by Maddie Simone and Diane Lieder – were

'SIMPLY THE BEST’ raising $3,180!!

Lymphedema Awareness Network - LaSalle, Windsor, Essex County, Chatham, Kent

In second place was TEAM LUIGI led by Rob Caparelli with $3,086.

Special thanks to Sara Quiring of Ottawa, who kept us motivated everyday.

And the tremendous effort from the rest of our incredible teams from all around Ontario:

Walk With Dee 2020, team lead Dolores Steinwall

Walking in Ireland ... kind of ..., team lead Jacklyn Jones

Peterborough/Kawartha Lymphedema Awareness, team lead Janet Vanderveen

Markham Lymphatic Centre's CHALLENGE:LYMPHEDEMA, team lead Ann DiMenna

Yoga-t a lot going on, team lead Sara Waddell - Sara inspired us with her daily posts about the practice of yoga

Life,Bliss and All of This, team lead Deborah Peniuk

Striving for change, team lead Sophia White

Knitting challenge for Lymphedema, team lead Anastasia Efimkina

Special thanks for very generous donations: 

Glen and Margaret Gagan  

The Wight Family  

Jemcor Elevating Inc

Also a special thanks to Deborah Peniuk, who did a great job of posting on

Our Social Media and putting together the final slideshow, downloadable here. It is recommended that you listen to Tina Turners - Simply the best while viewing. 

Member Stories

Please continue to send us your stories so we can include in our e-newsletters.

Managing my lymphedema now, in 2020 takes far more effort than it did in 2003 when I became aware it had developed. I was living outside of Thompson, MB in a lovely cabin on a lake. The only 2 lymphedema therapists in the province were in Winnipeg an 8 to 9 hour drive south, or a 2 hour expensive flight, or an expensive 15 hour train ride. I drove when work needed me there and paid for the travel. Needless to say there was no opportunity for the initial stage of treatment. I would meet the therapist for MLD. She taught me a few exercises and self-massage, and arranged it so I could get circular knit off the shelf compression sleeves. In a few years I got a custom sleeve which I wore rarely as my ‘best dress’. Practicing Taoist Tai Chi became critically important. The volume of my arm varied widely. There was one infection which I did not recognize as important but my doctor prescribed antibiotics. In 2016 a raspberry thorn led to septicemia and cellulitis. It was treated properly but still scared the living day lights out of me. A 2nd cancer diagnosis led to a move to Ontario and a hugely enlarged my arm due to stress, heat, humidity, packing and moving things myself, and all the frustration of trying to make my way through Ontario’s medical system. A lymphedema therapist got me into the system but I could not understand how it worked. She was an hour drive from where I lived. Much better than 8 hours. I also had some choice of therapist. Also much better. ADP helped pay the sleeves, now ugly heavy flat weave ones in ugly colours. I’m thankful for that. My arm continued to swell and I was able to change my therapist, Finally in 2019 I had a week of intensive treatment that has made great improvement. Then I got a 3rd cancer diagnosis and did not handle it well. I destroyed my relationship with the vendor, let my ADP lapse, and then covid-19 arrived. Therapists were closed. My sleeves were 6 months old. Finally I reengaged with life and my therapist is back. Forms are filled out and submitted. Soon I will have new sleeves. I have been wrapping my arm day and night and use a Ready Wrap. Being on chemo has limited my gardening, and other things I normally do that enlarge my arm. I no longer do Tai Chi but I do stretch, self-massage, and constantly reinforce the need for adequate self-management. I like to think that lymphedema hasn’t changed my life and that I continue to do what I want to with an attitude of adventure. But it has changed things. It dominates my life because without a healthy arm I can’t do the things that are important to me. And I want a pink sleeve. Please.

Perhaps not the inspiring story you were looking for but writing it has given me useful insights. Thank you.

Leslie King
Kinmount, ON  

I am so thankful to the Lymphedema Association of Ontario as through the webinars I have learned so much more about my condition!  I am glad to share my story and it is disgusting that it took 7 long years to get the diagnosis.  Lymphedema never goes away and the great thing is that if you do everything you can it can be managed!  My hubby calls me Miss Compliance as I wear my compression stockings every day even on those days that the temperature is hitting over 90 degrees!  I use an appropriate moisture cream every day on my affected limbs which are both legs and thankfully I was just able to return to the professional who does manual lymph drainage and she advised me that my work on my skin integrity is very successful!  At night I wear products on my legs to help continually move the lymph fluid.  In the last month I have purchased walking poles and am trying to get out daily with them and they help the balance issue.

Regards,

Doreen

Please remember that this is your Association and we need to work together to make it great. Send us your ideas and suggestions and join us to make them work.

This is the last e-newsletter for the year,

so I want to wish you all a very happy and healthy Christmas. Stay safe, stay active and positive.