Lymphedema Sucks

Anyone who’s had lymph nodes removed knows there is a chance you will develop lymphedema sometime in the future.  Not everyone does…but many do. I had 18 lymph nodes removed ,and 13 of them were positive for cancer. I’m not sure exactly when I noticed any changes, but it did happen to me.  The worst I remember was when I was pregnant with my first child….I remember just how swollen my arm and hand were.  I lovingly referred to it as my Popeye arm….it was awful.  You can see here just how bad it was….I felt like a monster.  Thankfully with the help of therapy, it got back down to a “normal” swollen state that I could live with.

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Over the years I’ve lived with my permanently swelled arm.  I’ve stretched out clothes, can’t wear most button up shirts (tight sleeves), can’t wear watches, and sadly….I can no longer wear my actual wedding ring.  I’ve resorted to buying various wedding rings at any location I can find and I wear them until they turn my finger green or fall apart.  It’s sad, but this is my life.

I don’t have many flare ups…..I have to take precautions with exercise, I shouldn’t be in hot tubs, and I should be wearing a sleeve to help prevent additional swelling.  That last one…..I’m not so good at.  Really bad at.  Like a toddler…..bad.

When I went through therapy I had to wrap it with all sorts of gauze and bandages every night at day.  It was HORRIBLE!!!  I hate feeling constricted and uncomfortable.  The sleeves make me feel that way too.  They get in my way….hold me back….irritate me.  I also really hate how medical they make me feel.  My insurance at the time covered some of a sleeve, but it was brown.  Medical sleeve brown.  Or beige.  It  doesn’t matter….I hated it, hated it being on, and hated being seen in it.  So I didn’t wear it.

Now…..I recently had shingles for the millionth time.  This particular time was really bad.  It usually hits my left arm and torso area that was affected by radiation and surgery.  The whole cancer area.  It was a terrible experience.  I had rash, fever, overdosed on ibuprofen….just a bad time.  It passed quicker than it does for most, which I’m truly thankful for, but I’m guessing this caused my latest flare up.  My arm got sooooooo swollen.  So did my hand.  Popeye was back 😦

My really amazing breast friend Jamie let me know she was in touch with LympheDivas….a wonderful company that offers sleeves, gauntlets, and gloves that are truly amazing looking!  Colorful designs, cool patterns, and special themes.  I’ve always loved them, but could never get my insurance to cover anything.  And honestly as time went on, I just gave up.  She was talking to them about blogging about their products.  She doesn’t have lymphedema….but she knows she is at risk and she needed something for an upcoming trip.  She mentioned to them that I do have active lymphedema and also have a trip coming up.  They contacted me and said they would do the same!  I was so excited….felt like I was shopping for prom looking at all the options!  We couldn’t wait to receive our special products….and even found out that we picked the same styles 😉

When they finally got here we did a little video!  She is used to doing them, I am not 🙂

I wore mine immediately! Every day….and of course it ticked me off, but I kept wearing it.  I got so many compliments on it from strangers….I actually didn’t feel so medical when I was out in public.  That was a HUGE thing for me….as open as I am about what I’ve gone through, I don’t like attracting attention because of it.

Last weekend we flew to Utah, as you saw on my previous post!  I was all geared up for it and fully prepared!  I wore my sleeve there and back, and even while I was there.

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Now…..I’m a person who expects instant results and miracles.  They don’t usually happen, but I do expect them.  I can say that since I’ve worn my sleeve and glove I have noticed my arm size reducing.  That is exciting….even if not instant.  I’m happy to be able to wear this in public and feel ok about it, which helps me wear it more often.  The sleeve is so soft too…..but it still does it’s job.

Lymphedema sucks.  It really really sucks.  There is no way around it.  I know my case isn’t as severe as others…..but it’s really difficult and just another reminder of how much cancer has changed my life.  Look at this!  Even leaning on a counter for a bit shows how much fluid I have in my arm…..

It looks grotesque!!!!  And this is something I deal with daily.  I cannot stress enough how important it is to be treated and not ignore any signs of lymphedema.  No….I am not a doctor, but I am someone who regrets ignoring it all these years and just hoping nothing bad would happen.  I should have taken more precaution and been a whole lot more proactive with my condition.

And I really love LympheDivas!!!!  It was so hard to pick which design I got for my first set….and I know I will be getting more.  Here is a link to their site!  LympheDivas

Check them out…..and also make sure you check with your insurance to see about any kind of coverage.  And thank you LympheDivas!!!!  You made me feel ok about being in public with my stupid Popeye arm!

Katie 🙂

Update!!!  I want to share some information that was passed along to me to make it easier to get a sleeve!!!

First, on the topic of insurance. If you  are unsure about getting coverage for the garments, LympheDivas does work with two specialized DME boutiques that will check benefits/process insurance for our garments for anyone in the US.
Luna Medical: http://www.lunamedical.com/products/elastic/lymphedivas/

Second is that they have a budget option for our garments, they are called 2nds, and they are medically effective garments with slight aesthetic imperfections like misprints in the patterns. In the last month they have purchased a new printer and can now get more vibrant colors, so they took their entire inventory of existing garments and put them into 2nds, just because they have a slightly less vibrant color to what they currently offer. So, if there is any interest, this is a great time to look at those options because all the garments are 50% off retail price:  https://lymphedivas.com/discount-seconds-1/

Birthday Breasties!

39 years ago my partner in crime, life, and all things breast cancer was born.  It took us years to truly find each other, even though our lives have been intertwined through it all.  Our dads grew up together…..and it’s always funny to me that I’m sure at some point her dad arrested mine….very likely happened…..and that is a story for some other blog.  We ended up in grade school together, somehow ended up working together at the same place for years.  For a long time that was it….just being in the same places at the same time, but never really interacting.  We knew each other, we were friendly…..but that was about it.  Until one day in 2012.

I remember it well….I had a newborn and was at my daughter’s preschool Christmas party.  I got a phone call from a number I wasn’t familiar with.  Something told me to answer it anyway.  It was Jamie…..and she was calling to tell me she had just been diagnosed with breast cancer.  And it shook me.  People were coming to me throughout the years about concerns they had, family members or friends who were possibly facing it, but this one really got to me.  And people knew that I was very open about hearing from anyone who had questions or concerns.  And she knew to call me…..and it started something that just cannot be stopped.  We grew closer as she fought, had ups and downs, and now is at my side in a battle to rid the world of this evil disease.

The way we are now makes me wonder how on earth we didn’t truly find each other earlier  We are both dorks….the weirdest people you’ll meet.  We are silly, crazy, and laugh at everything.  We both faced a horrible disease and used our experience to reach other people.  At that time in December 2012 she needed me…..but I didn’t realize I needed her too.  She’s challenged me to be the person I am now.  She has taken me WAY out of my comfort zone and I’m truly grateful for her influence in my life.

But it’s more than that…..we are true friends and sisters.  I don’t know how many times we talk in a day, but sometimes it doesn’t seem like enough times.  We get each other, understand what we are both going through in life after cancer.  Not many people understand it, and I’m so thankful I have someone in my life that does, that I can call a friend.

A breast friend.  Breastie.  BFF.  Pink sister.  We’ve said them all…..and on her birthday…..I’m just so thankful she’s here living life with me.  No matter what we do.  Crazy conversations,  roaming through stores, laughing on the phone, going to galas, supporting each other, and just being there.  I’m so freaking blessed.

And now I’m going to share something I never thought I would.  This is a true example of her pulling me out of my comfort zone.  She has no fear, and I’m getting there.  Everyone has seen her picture….the one with her painted chest.  Not many people know that I was there that day but my current job prevented me from sharing it.  And I also looked horrible….no matter what she says 😉  I was painted by the amazing Jenni Bush and my pictures were taken by the talented Olivia Kohler.  And the pic is small….baby steps…..but this is a glimpse of the shenanigans we get in to together. The other pictures are mostly selfies….and we take a lot.  One thing we learned together….we can’t have enough pictures together ❤

Happy Birthday my breastie bff Jamie!!!  I’m proud and honored to be your friend….and so very thankful to have you in my life 🙂

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Katie 🙂