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A little change can make a difference

With less than a month left until the Walk for Lymphedema and Lymphatic Diseases (#LymphWalk), I’m finalizing my fundraising endeavors and transferring all the donations to the website.

hotsauce82017Those who have read my past posts understand that since September 2016 I have been embarking on “The Year of Change,” a twofold fundraising project. Part one is that I simply have been collecting change in a gallon-size hot sauce container. The pennies, nickels, dimes, and quarters have come from several sources, but much of it has been found around my house, particularly when kids and the hubby leave shiny coins on tables and floors or in pockets 🙂 I filled it quite a bit today. My husband, Patrick, has a coffee can into which he is supposed to toss only quarters, but over the past six or so months, he’s been tossing everything in there (today, I found a Kentucky pin in there!). So this afternoon I spent an hour digging out the cheaper change, and to the right you will see how much fuller my hot sauce container is as a result! I will be collecting the change until Sept. 5, when we will cash it in and add it to the #LymphWalk fundraising page at https://www.crowdrise.com/What-the-Swell–

Part two has involved collecting refundable bottles and cans from family and friends and cashing them in for the nickels. Thank goodness those can/bottle redemption centers exist now! We’ve returned 2,620 cans/bottles ($131) already, and we’ll be doing another collection and cashing that in Sept. 5. Labor Day weekends should net us a good amount of nickels!

At $636 raised so far, I’m not doing bad, but I always wish I could do better. Truth be told, I probably will never be fully satisfied with my contributions … I often wish I could win the lottery or something so I could give a large chunk to my favorite groups, especially the Lymphatic Education & Research Network (lymphaticnetwork.org), which sponsors #LymphWalk. But for now, I do what I can without totally annoying my family and friends 🙂

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Who wears short shorts???

me beach

PHOTO: Me during my Florida vacation in 2010. You can tell that the left leg is a little chunky already, but at that point, I did not know why. Now I know it is lymphedema. Here’s hoping I can be this brave and show a little leg at the beach seven years later!

Well, not me that much anymore.

I am hoping to change that after my upcoming vacation to North Carolina. And before some of you get too excited … not ~that~ short!

As I sat in our guest room with my suitcase the other day, I realized I had a dilemma. I had already tossed a few pairs of long pants and some maxi skirts into the suitcase, gearing up for a long-deserved vacation, when I realized I quickly was running out of room. In that moment, it hit me how much has changed since the last time I packed for a long-term vacation in 2010.

After I was properly diagnosed with lymphedema in my left leg in 2011, I drastically changed my wardrobe. No more cute, little skirts (my sister inherited all of those). No more open toe shoes. No more shorts in public (I define “public” as in front of anyone who is not in my immediate family). Why did I decide to hide what my husband affectionately refers to as my “ham hock leg and sausage toes”? It was not primarily out of shame … it was more to spare others from the instinctive need to stare and ask, “did you know your (leg/foot) is swollen?!” But I will admit that it was partly out of fear of being seen as “different,” “deformed” or “damaged” in some way.

After living with lymphedema for nearly nine years — three years of which were spent undergoing countless tests and misdiagnoses until I was told what my disease actually is in 2011 — I still find it difficult to uncover a little bit. So as I stared at my suitcase, it dawned on me that I was packing 10 days’ worth of clothing for a five-day beach excursion. Anxiety was driving the need to toss more layers into my bag. My husband and I will be with his family at a beautiful beach house on the North Carolina coast, and with the beach being semi-private, I will not mind showing a little leg while enjoying the sand and sun. But all the other possible destinations have my mind racing. What will I wear when we are hanging on the porch or in the house? What will I wear if everyone decides to go out for a night on the town? What will I wear if we decide to just take a walk? I may be too concerned with making other people uncomfortable with my jeans and Army-style boots in 90-ish, high-humidity weather, but I also know that I should probably dress to be cool rather than dress to hide my leg.

I often wish I were one of those “screw what others think” kind of people. That would be so much easier. But I am me, and “me” is a worrier. I probably still will stick to mostly long skirts and pants when leaving the beach house, as I do in the work environment or at social functions. I actually have added to my wardrobe with some adorable palazzo pants, and I actually found some that do not look like pajamas. But when on the beach or at the house with my husband’s family — who probably should count as “immediate family” for this instance after three years of marriage — I’m going to challenge myself to don some shorts and teach others about lymphedema if/when they ask why the leg is so chunky. Of course, I will keep in mind that I can’t expose the affected limb to too much sun, that I have to wear my sunscreen, and that I must elevate the leg whenever possible. But the main goal is to relax, be comfortable, and have fun! All I want to worry about this vacation is sleeping in, soaking in a little sun, and sipping some adult beverages. If I end up spreading some awareness about this disease, even better.

Lighting up the night for lymphedema

https://www.facebook.com/search/str/lymphatic%2Bpeace%2Bbridge/stories-keyword/stories-public?esd=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%3D

I’m excited that the Peace Bridge Commission has found the cause of lymphedema worthy enough to light up the bridge in teal for World Lymphedema Day on March 6, 2018! I was equally pleased that the Lymphatic Education & Research Network found inspiration in my endeavor and has since been seeking to do the same with the Empire State Building. I’ve put a call out to others with lymphedema across New York state to see which structures in their areas are regularly all aglow and to request that they be awash in teal for World Lymphedema Day! 🙂 Next month, I’m going to work on Niagara Falls, Buffalo City Hall, Buffalo’s Electric Tower, and more in WNY. Maybe if we get enough teal coverage across the state, lymphedema will get more media coverage!

***

The Walk for Lymphedema, sponsored by the Lymphatic Education & Research Network, is fast approaching! This year, instead of begging our family and friends for more money, we are holding a huge refundable bottle/can drive at our home and businesses, and any money we make from returning said bottles and cans will be donated to The Walk under team “What the Swell?!” 🙂 If you want to participate in The Walk, either in person or through a virtual walk, sign up at https://www.crowdrise.com/2017-ny-walk-to-fight-lymphedema-and-lymphatic-diseases1. You also can donate to other walkers there!

A Year of Change

The weekend of the 2016 New York Walk for Lymphedema and Lymphatic Diseases, I was feeling somewhat down because I could not attend this powerful event in New York City. My husband, Patrick, and I traveled to the Big Apple in September 2014 for The Walk as part of our honeymoon after our wedding in August 2014. We used a portion of our wedding gifts to make the travel arrangements and to make what we considered to be a decent personal donation to The Walk’s benefactor, the Lymphatic Education & Research Network. The trip was expensive for us, as we live in Buffalo — on the other end of New York State — and we have modest incomes and a son in college. Airfare, hotel, and meals came to more than $2,000 alone. This trip was important for me to take, however, because I suffer from lymphedema, and when no other source offered me answers or support, LE&RN was there for me. And I was so blessed to have a husband who understood this and agreed to celebrate our union by participating in a charity walk!
Recently, I’ve been torn because while we are saving for a trip to Ireland someday, we wrestle with guilt setting aside that type of money when the funds could be donated to so many worthy causes, including LE&RN. It took us many years to get to the point where we can actually enjoy some of the money we are earning, and it’s hard for me to think of myself first. So the weekend of the 2016 Walk, as I was home cleaning while my mind was 400 miles to the east, something caught my eye and gave me an idea. My husband leaves change everywhere — on the kitchen table, on the coffee table, in pockets, and even on the floor. I, too, have issues with change. Every two weeks or so, my purse weighs a ton, and I end up dumping out nearly $5 in loose coins from the bottom. So, as I reached down to our bedroom carpet to retrieve a quarter before I vacuumed, the idea struck. Why not just put all this change aside for the next year and see how much we collect?
We also decided to put out a call on social media to our family and friends to donate their empty returnable cans/bottles so we can cash them in. We even told those who know where we live to just toss bags full of returnables over our fence 🙂
It might not be enough to actually make the trip again, but pinching pennies, nickels, dimes, and quarters should give us a great head start as we participate in The Walk as virtual walkers for the third consecutive year in 2017. And who knows, maybe the hubby will become more generous with the “tips” he leaves around the house to further the cause, and maybe we will be able to celebrate in person once again.
(Photo: It’s a start… we’ll fill it up, though!)

Getting back into it…

It’s been a while since I really posted anything new. After our last fundraiser and video, things got hectic with moving. We also lost my brother last year to a heroin overdose, so it was difficult concentrating for a while. But I’m feeling like I need and want to do more to bring more attention to lymphedema. With the encouragement of the Lymphatic Education & Research Network, of which I am NY Chapter secretary, I sent a letter to my village, town, and county lawmakers asking that they designate March 6, 2017, as World Lymphedema Day, and much to my delight, the Town of Tonawanda, N.Y., and Erie County, N.Y., have agreed! I’m very excited by this because this will spread awareness of lymphedema. I also wrote a letter to the editor and sent it to about 20 different WNY newspapers, and it’s wonderful to see that several publications have run it already! If one more person is helped by any of this, I’m so happy!

Some links to what I’ve been up to:

http://www.kentonbee.com/news/2017-02-15/Letters_to_the_Editor/Lymphedema_Day_brings_attention_to_lymphatic_disea.html

http://www.thedailynewsonline.com/bdn06/world-lymphedema-day-spotlights-diseases-20170216

http://www.allwnynews.com/2017/02/guest-view-world-lymphedema-day.html

http://lymphaticnetwork.org/news-events/tonawanda-new-york-world-lymphedema-day

 

 

It’s fundraising time AGAIN!! :)

UPDATE: Did you see our video announcing the winner??? If not, visit here!

https://www.facebook.com/LympheLisaWhatTheSwell/videos?lst=1556745415%3A100002827734886%3A1487790983

I’m baaaack, and I’m raising money again this year for Roswell Park Cancer Institute in Buffalo and the Lymphatic Education & Research Network! This year’s fundraiser is a 50/50 being run through GoFundMe. Check it out here!!

https://gofundme.com/stickittocancer12

Still spreading the word…

It’s been a while since I last wrote about my lymphedema. I have to say it’s mostly because things have been going pretty well. While my left leg will always be plumper than its counterpart, I am happy to report that I’ve found a treatment method that is helping me maintain the size of the leg so that the disease does not horribly affect my everyday life.

Since November 2014, I’ve been using a pneumatic compression device from Bio Compression Systems that has been such a great tool in managing my lymphedema. While I still must wear a compression stocking 24/7, I do not have to wrap my leg with compression wraps anymore. I use my pneumatic pump daily for about an hour per session, and then I’m off. While the numbers fluctuate based on how active I am and even on how cold or humid it is outside, I’ve maintained a great loss of fluid over the past year-plus. I’m really happy with the results.

Here is a link to a testimonial I did for Bio Compression Systems:

http://www.lymphedemaexpo.com/durable-medical-devices/

I must note that my experiences may differ from other patients, and this testimonial is not designed as medical advice. Everyone must discuss treatment options with their own providers and be evaluated on an individual basis before starting any new treatment method.

I also am still working with the Lymphatic Education & Research Network, helping to develop the New York State Chapter as its secretary and to continue to raise awareness about lymphedema. We’ve added more states, so check it out:

http://lymphaticnetwork.org/chapters

Don’t worry if you don’t see your state yet … we are adding more until we hit all 50! In the meantime, feel free to join the conversation in a neighboring state!

Finally, there is something we all can do to bring awareness to this disease. Several groups, including LE&RN, are calling for March 6 to be declared World Lymphedema Day. Please sign the petition and support this worthy case:

https://www.change.org/p/white-house-u-s-senate-u-s-house-of-representatives-world-health-organization-united-nations-global-leaders-declare-march-6th-world-lymphedema-day