Live your best life with Lymphedema.

Holly Bone.

“I have taken my frustrations and turned them into a motivation. Motivation to find answers, spread awareness, find a cure, advocate for this disease, and ultimately help others along the way.”- Holly.

 

My name is Holly Bone. I am a goofy, small-town girl from Indianapolis, IN. I’ve been married to my husband, Josh, for 8 months and we are the proud parents of Eddie, a Catahoula Leopard/Boxer and Murphy, an Australian Shepherd. Yes, I am a crazy dog mom! As well as being a wife and a dog mom, I have been running a wedding photography business for going on seven years, I just started a new business customizing different items including signs, mugs, drinkware, and accessories; and I work for a radio station selling air time. I have a very busy and fulfilling life, and I am also living with Lymphedema.

I was diagnosed with Lymphedema in November of 2015, after about eight months of unexplained swelling in both of my legs and abdomen. I had every scary word you can think of thrown at me- cancer, tumor, heart failure, but I think the worst possible words that were thrown my direction while trying to get diagnosed were, “I don’t know”.

I was very frustrated and scared in my pre-diagnosis months. Finally, I was referred to a vein specialist by my PCP who talked to me for about 5 minutes and felt my legs and checked for pitting before she said, “You have Lymphedema”. She talked to me like it was no big deal and said, “go back to your primary care physician and he can help you from there.”

Going back to my PCP was more than frustrating because he told me that he couldn’t help. He basically said that his job was done and sent me on my way to a physical therapist (don’t worry, I have a new doctor now!). The PT was a godsend. She was more than helpful with teaching me how to do MLD, bandaging, fitted me for garments and also got a Flexi Touch rep in to help me get fitted for a pneumatic pump.

Being a wedding photographer, I am on my feet a lot during events, and then at my desk a lot during editing. I will spend about 12 hours on my feet during wedding day and then the following two days, I am completely wiped out. I spend those days detoxing, elevating my feet, and treating myself very well. At first, I was convinced that I would have to cut back on the amount of weddings I do each year, or even worse, quit. I made the decision that I would refuse to quit. It will not be an option for me now or ever.

Now, when I go to shoot a wedding, I am able to mentally and physically prepare myself for that day and the several days after. The most important thing to me is compression. I wear my compression garments and a loose shirt to be comfortable and less restricting. When I get home from the wedding, I drink some water and prop my feet up (I usually fall asleep on the couch doing this). The next day, I let myself sleep as late as I need to, then I pump one of my legs with the pneumatic pump. I have Lymphedema in both legs, but I only pump one leg within a 12-hour time frame. After I pump, I put my compression back on and get on with my day. I take it easy because often, my knees and hips will be very sore, but I make myself get up off the couch and live a normal life.

Wearing compression kind of bothered me at first because, let’s face it, it is not cute. But, the more I wore it, the more I remembered that I don’t have a fashion sense anyway and I have never cared much about what I look like, what brands are in, or what others think about my appearance. And when I remembered who I was, that little detail that used to bother me, suddenly didn’t bother me anymore.

My journey with Lymphedema has been scary, confusing, frustrating, depressing, and overall draining. However, I believe in the saying, “everything happens for a reason”. I truly believe that I would not be handed something I couldn’t handle or learn from. I have taken my frustrations and turned them into a motivation. Motivation to find answers, spread awareness, find a cure, advocate for this disease, and ultimately help others along the way.

Being diagnosed with Lymphedema has become less of a burden and more of a purpose.

I guess you could say I am chronically motivated to live a normal life. My best advice to those that are struggling as I did for a long time is to live your life. Do not let this disease limit you or define you. Do your best job managing it and push yourself to get off the couch, even when you hurt; to go out and see your friends, even when you’re embarrassed; to wear the shorts or the little black dress, even though your compression garments are visible; and don’t let anyone bring you down. “No one can make you feel inferior without your consent.”- Eleonore Roosevelt (Not even Lymphedema!) BE the best version of YOU!

Where you can find Holly:

Instagram: @hollyburry_

 

 

Contact Us

Chronically Motivated Monaco, 98000. chronicallymotivated@gmail.com

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