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Stay Lymphie Strong

Standing up to Lymphedema with all of your faith, power, and might.

My World Lymphedema Day Post – March 6, 2016


Originally written March 6, 2016

Today I wore turquoise for World Lymphedema Day. This is my story. I have had this since college in ’94. When I was 10, I was scratched by a neighbor’s cat and spent 4 days in the hospital with 104 fever. The lymph node in my right thigh turned as hard as a rock. Ten years later, I had swelling, and it never went away. Just like my Dad. There is no cure or medicine for it. It’s treatable with physical therapy, manual lymphatic drainage, and compression. Some of the symptoms are chronic pain, chronic fatigue, decreased mobility, frequent hospitalizations from cellulitis, and heaviness in the limb. Without treatment, it becomes progressive to full blown hardening of the tissue. On my worst days, it felt like I was walking on broken shards of glass. 
The reason I’m speaking out now is because I’m part of a wonderful community that is trying to promote awareness of the lymphatic system. It’s just as important as cardiovascular or dental health, yet no one knows about it – not even doctors. 
Despite no cure, I plan on living a long life by remaining mentally strong and focused even when my legs and back won’t cooperate. I refuse to let it get me down, and I will help as many people with it as I can. God is not done with me yet. ✝
Thanks for listening. 💙

“I’m not THAT bad…” – Importance of managing mild Lymphedema and avoiding living with regret

This page is not just about hope, inspiration and taking action, it’s about preventing (as much as possible) the advancement of LE too. The flip side of the story. 
This picture is from Oct 2007. The day I went bilateral. 😪 Literally within hours of stepping off an 8 hour direct flight from Houston to Honolulu my left leg began to puff up. You can see my original right LE leg with NO compression. I was in shock and DENIAL that I had LE and now that it had spread. My father always pleaded with me to wear my compression in the original right leg and wear sensible shoes with laces. I complied in winter when it could be hidden but not in summer. ☹️ Certainly not on an island like Hawaii. 🌴🌺

My excuses to my Dad – 

1) I’m not THAT bad. I don’t really have LE, not like you. It’s just a little swelling compared to yours. 

⭐️ I didn’t realize Dad was once mild too. Shame on me. 🤔😔

2) I’m a woman, you’re a man. 💃🏻💃🏻 You always wear pants and no one questions it. I want to wear skirts and shorts like other young women my age. I was 33 here but had had LE since 20. I don’t know any young people with LE my age! You’re old. 

⭐Typical childish response to a parent.  Little did I know Dad had worn shorts fishing and swimming with his friends and brothers and had been made fun of too. That his brothers had defended him, because my grandpa had had it too. They too knew he was mild compared to my grandpa. See that cycle? 
3) It is #%^*^ hot! Dad, how can you stand to wear full compression under jeans in this heat??? 😧😢😥😖😫😩
⭐️Dad was a welder by profession and worked outside in the Texas sun day in and day out. Never complained. 
I will live to the day I die with the regret of NOT wearing my compression full -time when he told me to in those early years, and I have no one to blame but myself. I take full responsibility. As part of that responsibility, I am now encouraging everyone that is mild to share their compression and fashion advice. 

I will never know if I had been wearing compression properly on that flight, had the outcome been any different. However, at least I could have looked back and said “I did everything I could and LE won” instead of “I wish I had at least tried.” 😢

Regret is very tough to live with, and I had to learn to forgive myself and move forward with that on my own. I can only share my story. If you are mild, wear your compression if you have it. And yes, always always always feel safe and free to post your success too. ❤️

As always, I’m wishing you great lymphatic health and hope that you are pain free. 💙

Vern 

Texas Walk to Fight Lymphedema 2016 

I have accepted an invitation to very briefly speak at the Texas Walk to Fight Lymphedema & Lymphatic Diseases this year on October 15, 2016 in Plano, TX near Dallas. The Lymphatic Education & Research Network is a 501C3, non-profit organization whose mission is to fight lymphatic disease and lymphedema through education, research, and advocacy. This an opportunity to meet many of my fellow Lymphies in person from across the state and other regions. It is very exciting!
In September 2015, I created the Lymphie Strong group in honor of my father, not knowing he would pass away less than a year later. He suffered with it for 43 years, and I have had it for 22 years. This walk is very personal for me. 
Our Lymphie Strong team is “Dedicated to giving hope, inspiration, and support to those suffering from Lymphedema.” If you would like to join my team either in person, or virtually through your donation, please let me know. The name of the walk team is the Lymphie Strong TX Walk group, and we would love to have you join us. You do not have to be from Texas to be part of the team. Any amount is appreciated, even $1. 😃
https://lymphaticnetwork.kindful.com/tx-lymphwalk-2016/lymphie-strong-inspiration-group

Living Life to the Fullest- Tina

Lymphie Strong Inspiration Group member, Tina Morrison Ciner, recently chaperoned a Relay For Life event. Tina has secondary LE in her arm. 

She shared her experience as follows:

Hey, I just chaperoned a Relay for Life event! I was there from 4:00 pm to 12:45 a.m. It was really cold & we walked laps to warm up.  Here is part of the team:

My daughter is the team captain in the turquoise shirt. My first Relay was my 5th anniversary of being cancer free. 

This year is my daughter’s last high school Relay & my 16th anniversary of being cancer free. Relay starts each event with a survivor lap & then caregivers & then the rest join in. The luminaria part of the night is very moving!

How incredibly courageous to survive cancer and learn to manage LE all while watching her daughter grow up!  You are amazing, Tina! 

-Veronica 

Living Life to the Fullest – Josh

Yoga is probably one of the most universal forms of exercise and has proven to be very beneficial for many people with Lymphedema. 

Yoga in the park? You’ve seen it done in movies, and I’m sure on several yoga DVDs. Heck, it’s on my own personal bucket list. Well, this dude does it, Lymphedema dude Joshua

Here’s Joshua’s story: 

My name is Joshua Aka lymphedema dude I’m now 36 years I was diagnosed at 23 with primary Lymphedema. The swelling is from my toes up to my knee in my left leg. 

   I was seen by three doctors before a endocrinologist gave me my diagnosis. At the time all was told was the no cure, to wear compression and to prop my legs up when possible.

   I was also born with Noonan’s syndrome when I have found out that many NS patients develop lymphedema. 

   After my diagnosis I went through many years of self denial and depression. The result was I developed a life for unhealthy eating and inactivity naturally I gained weight. I found myself standing five foot and weighing 296lbs. 

After years of misteating my body I now though my continuing yoga practice, clean eating and self MLD I’m taking of myself & my LE. I now advocate for Lymphedema & Noonan’s syndrome awareness as well a healthy life style. 

Joshua has been such an inspiration to so many that when he takes a break from posting his daily Yoga poses, we all miss him! Where is Lymphedema Dude? Ha! 
He also recently completed his first 5K as part of The Lymphedema Running Club.

Lymphedema Dude is a trailblazer. Follow Josh on Instagram at lymphedema dude – You will be inspired!
-Veronica 

Living Life to the Fullest – Jennifer

Resuming the segment of the blog that features everyday Lymphies defeating the odds, the next post is about Jennifer from Zürich, Switzerland. Lymphedema affects people worldwide, and it is great to get an international perspective. 

Here is Jennifer’s story in her own words:

“I am 26 years old and my LE was diagnosed when I was 12 years old. It’s primary. Have it in all toes, both feet, legs and now in my right butt cheek and in my back. The first doctor I went to had no clue about LE. He knew what it was, but he didn’t know how to treat it. All he said was, that I should lose weight. 

I wasn’t overweight, but I did what he said, because I was only a young girl and he was the doctor. I lost a lot of weight and that’s how my eating disorder began. I was so skinny (45kg) but absolutely nothing happend with my LE. My mom send me to rehab, because I refused to eat. In rehab I reached 53kg and could go back home. 

My mom found a great doctor for my LE (after a long search). The doctor recommended an LE therapist. I started therapy, 3 times a week MLD and wrapped 24/7 for a bit more than 7 weeks. It was so great. I was so grateful to get help. I got compression stockings, and I can’t imagine my life without them. I’m still fighting against my eating disorder, but I have it under control. The therapists said that that would also be a lifelong fight. I have an appointment in June ’16 to talk about LE surgery. I’ll see if that works for me. I see LE no longer as my enemy, it’s part of my body and I learned to see it as a challenge and a mission to spread awareness!” – Jennifer MacNamara 

Jennifer joined the Lymphie Strong Inspiration Group on April 8, 2016 and has inspired so many with her enthusiasm and positive outlook on life. Thank you for sharing your story and journey with us, Jennifer. 
-Veronica 

They Told Me I Couldn’t, That’s Why I Did

Having never been a runner, one of the first questions I had was “What is a 5K?” Ha!

“The 5K run is a long-distance road running competition over a distance of five kilometres (3.1069 miles). Also referred to as the 5K road race, 5 km, or simply 5K, it is the shortest of the most common road running distances.” –Wikipedia

I know. It’s funny.  I used to say the old phrase “If you see me running, you better run too because someone is probably chasing after me.”  The last thing you want to do when you are swollen from primary bilateral Lymphedema of the lower extremity is walk a long distance, let alone run. It is a seemingly impossible task. At least at first.

Continue reading “They Told Me I Couldn’t, That’s Why I Did”

Deep In The Heart of Texas

LymphieStrongTexas

I am excited and looking forward to participating in the Lymphatic Education & Research Network 3rd Annual TEXAS Walk to Fight Lymphedema and Lymphatic Diseases in my home state!

Join me in raising $500 towards research, education, and advocacy or by becoming part of the Lymphie Strong Walk team.

Together we can defeat Lymphedema and help improve the lives of millions both here in Texas and around the world.

 

 

Catching Up!

I can’t believe it’s been 4 months since I have last posted! So much has happened. A few firsts and a few blasts from the past have pushed me even further on this journey of maintaining my reduction in my legs.

First of all, I started a new job in late October.  It’s an exciting change for anyone, let alone a Lymphie. One of the most exciting things that happened, other than the job offer itself, was that my husband bought me a dress suit for my first day of work.
Wait.

What?
Gulp. A dress suit?

Yes.  It was a surprise gift, which he had not done in some time. If you have lower extremity LE in either one or both legs, you understand how much a gift like that would make you cringe.  

While I tried to look happy, I remember being gripped with fear.

I had hidden my legs for so many years at the workplace.

Ultimately I decided to not let the old me and LE dictate my future or new opportunities.  I am so glad I did! No regrets.

Continue reading “Catching Up!”

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