The Author

Joachim Zuther, Lymphedema Specialist. Read more
Lohmann Rauscher
MediUSA

Tactile Medical

Thank you, Lymphedema

 

I am glad to share with you an inspiring article written by one of my most favorite people, a big lymphedema advocate, and co-host of a radio show devoted to raise lymphedema awareness, the Lymphedema Mavens radio podcast: Cynthia McKenzie Judge -most know her as “MsCJay”:

Joe Zuther

 

Thank you, Lymphedema

I am 6ft. I am told, that when I walk into a room I command a certain presence. This may be true. However, there was a time when lymphedema changed how I saw and felt about myself. Lymphedema did what two bouts of breast-cancer and two mastectomies didn’t. Lymphedema robbed me of the self-esteem that I fought to build over a lifetime.

I have lived with lymphedema for 36 years. It went untreated for 30 of those years. For most of those 30 years, the swelling was minimal and didn’t have a big affect on my life, I went on as usual. No one really ever asked me about it, and I never brought it up. It simply was invisible in my mind.

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By 2009 my lymphedema was out of control. I didn’t want to leave my house, I became a recluse of sorts, and when I did force myself to go out, I dreaded the stares and finger pointing (mostly from children). I would hear “she’s so pretty, but what’s with that fat arm and hand” or perhaps what I heard was my inner self-consciousness. My hand and arm were so huge, that I could no longer pretend. I became very self-conscious. Whenever it was that I did out in public, I would hide my swollen hand in my oversized purse, or stuff it into the pocket of whatever I was wearing at the time. Working from home made it easy to hide from the peering eyes of the public. I spent a lot of time trying to find a deeper, spiritual meaning for the swelling that had taken away my self-confidence. Metaphysically, swelling means that you are holding on to things. I certainly was holding on to a lifetime of hurt and pain. Ok, so that explained the thought process. But. What about the physical, how would I take care of this big swollen limb.

On October 23, 2009 a bout of cellulitis sent me and my self-esteem spiraling. I awoke that morning unable to get out of bed. My head was pounding, my hand and arm were painful, red and hot, I was unable to walk and I couldn’t swallow, so could not eat. I was terrified. I called my niece and asked that she come over and help me. I wondered if I had cancer again and that I was dying. I was in bed for a week. I remembered that a friend had given me a business card for the Lymphatic Center of Las Vegas a few weeks earlier. I held onto the card but never called, because I had no insurance. I searched for and found the card. I called and asked if they accepted patients without insurance and was told YES. I would simply have to pay for my bandages and wraps upfront and they would work with me on paying for my treatments. Oh happy day!

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November 1, 2009, was my 1st appointment with Dr. Richard Hodnett, who explained in detail what was going on with my lymphedema and how MLD (Manual Lymphatic Drainage) along with bandaging would help me. I was filled with so much emotion that I began to cry.

I was in treatment for 3 months 3 times a week. I was compliant and did everything that I was instructed to do. I wore my bandaged arm like a suit of armor. Funny thing about the wrapped arm, it made me feel safe. I got out of my house and went about life like a boss. I even had my fingernails painted red. I learned much about the lymphatic system and how crucial it is to our overall health. I was surprised to learn that many physicians are uneducated when it comes to treating lymphedema. This explained why no doctor mentioned my swollen limb in the past.

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As a result of treatment my arm was reduced by 15 cm (almost 6 inches) and it was time for my compression garments. What an emotional and exciting time. I decided at that moment that I would take my life back. I would become an advocate for lymphedema awareness. I chose black garments. They would become my trademark. I would use my 6ft frame as a walking billboard for lymphedema awareness.

CJ1In September of 2011 I was asked by Dr Hodnett to appear in a commercial for the Lymphatic Center of Las Vegas. It was at the shooting of the commercial that I met Christine Wunderlin, who filmed a commercial as well. A few weeks after the shooting, Christine called and asked if I would be interested in co-hosting a podcast devoted to lymphedema awareness. My answer was YES! Another life changing event. We decided to call ourselves The Lymphedema Mavens.

I found my passion! I love co-hosting our podcast.

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I continued searching the internet for lymphedema resources. The 1st organization that I became involved with was the Lymphedema Advocacy Group. I learned about the Lymphedema Treatment Act. It struck home with me, as my garments were paid for by a grant. It was through this group that I learned how to use my voice as an advocate. I became deeply involved and in November 2011 I took my 1st trip to Capitol Hill to advocate The Lymphedema Treatment Act.

I joined the Board as Secretary in 2012.

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Upon returning from Capitol Hill, it was suggested that I apply for the (LSAP). My application was accepted and I attended and graduated with the class of 2014. Another big step in gaining my voice and self-esteem. Attending the conferences and being exposed to so much knowledge gave me life.

I AM my happiest when I attend them.

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July 2015, I was diagnosed with endometrial cancer. I opted to have the da Vinci Robotic surgery; I knew that lymph nodes would be removed and it was a valid concern. At the time of my pre-surgery appointment I expressed those concerns to Dr. Kowalski, my surgeon. She informed me of the “sentinel lymph node detection” clinical trial that she was involved with. I was so thankful that I knew the value of the research from attending the NLN conferences. I told her that I would be happy to participate in the groundbreaking research. And, thanks to the clinical trial she only removed 10 lymph nodes. They were negative. No chemo. No radiation. Thank you, lymphedema.

I have found that it takes strength and courage live with what the world calls a “flaw” or deformity. For me, having lymphedema was far worse than losing my breasts 14 years apart. I can camouflage my missing breasts, not so with my swollen limb. Every day when I look in the mirror and see my body, my swollen limb stares back at me. It’s when I decided to step outside of myself and to own my lymphedema my entire life changed. I’ve never advocated anything. Lymphedema changed that. I found my passion. I found my voice. I regained my self-esteem. I have learned to love myself in the deepest way. Thank you, lymphedema.

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14 comments to Thank you, Lymphedema

  • Tiffany Howe

    Thank-you for sharing your story Ms. CJay! You are an inspiration to many in the Lymphedema community. Keep inspiring! Best wishes to you!

  • Kathleen McGuire

    I took a prescription of predisone that I was allergic to and a Dr. knew that and that is what caused my Lymphodema in my left foot and ankle. I have to say this is probably the worst think that has happened to me. The swelling and at times deformity. I know now that my Lymphoderma was caused by prescription medicine.

  • Maria

    I,too, have Lymphydema and could sure relate to your story! It is encouraging to know others feelbthevsame way! Thank you for all you do for the cause.

  • Lashonn

    Your story is so inspiring

  • Awesome!
    I am a male living with lymphedema as a result of cancer treatments. It has been 11 years and I am now ready to open up & tell my story. I have started working on a blog and videos. I have been thru MDL, wrapping, sleeves, and much more. I battle every day and fight the mental and physical pain. The more this is talked about, the more energy & motivation I have. Let’s keep spreading the word!!
    Thank you.

    • Wendy

      I have been diagnosed today with Lymphoedema in my right leg and am reading all I can at the moment about it. I had lymph glands removed last year due to cancer of the womb. I intend to do all I can to prevent it getting worse. My leg feels tight and hot at the moment and slightly red. I am waiting to go to the hospital clinic to get advice on elastic stockings. I have been told that it is a chronic illness that you can live with but must take care of my legs. What is the physical pain you mentioned?

  • Thanks for sharing your story and helping us to pass the Lymphedema Treatment Act

  • Thanks Matt, Let’s keep spreading the word! We have lymphedma, lymphedema does not have us! #loveandlight

  • Brenda Banks

    I have lymphedema in both legs from a cancer surgery 30+ years ago.it didnt develop until 2011 and i was misdiagnosed to start with because i had a blood clot so they said it was venous insufficency.but nothing was taking the swelling down so i put all my symptoms into a search and diagnosed myself and went looking for another doctor.He sent me for MLD.after just 2 treatments i was showing drastic reduction in the swelling and pain.then after i had the swelling under control,measured for stocking and they had just come in ,i developed another blood clot,here comes swelling back again and by this time my strength is less.i had trouble walking any distance,grocery shopping was out,standing in line for over 2 minutes was also out.i found a physical therapist who also has lymphedema.she understands when i say things that i dont know proper terms for.she started me in pool to build strength and regular pt also.it took months but could finally go shopping.then i developed cellulitis and it took 2 different meds to get it under control but the swelling is back so am now waiting for doctors to get together about another problem to see if i should take a dangerous fungal medicine as that was the route that cellulitis had entered.i am back swollen right now,weakened so that i cant stand even 2 minutes.i am not giving up though.i did it once i can do it again

  • Kingdra

    I just want to thank you for speaking up for those that has this.I myself suffer from lymphedema some doctors and People DON’T understand it’s not a cure for this.

  • I to have lymphedema . 9 years ago I had a lumpectomy for breast cancer. 6 weeks later I had to have an axillary dissection because the surgeon couldn’t find enough lymph nodes during the first surgery . The lymphedema started about a week later. My radiation oncologist sent me to rehab to learn the message and the exercise . I also wear a compression sleeve . I have kept the lymphadenitis pretty much under control. I am not happy about having it, but I feel pretty fortunate that is all I have to comp,sin about.