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/

What I Didn’t Tell You….

I have been blessed with a husband who has supported me through all of my cancer crap. He stayed with me when I was diagnosed, took care of me when I went through treatment, didn’t make fun of me when I was bald, accepted that I was changed, and loved me no matter what.  I couldn’t have gone through this all alone.  When many people would walk away, he jumped in to the crazy and never looked back.  But…..there were many things I thought of during all of this that I never told him.  My fears and insecurities.  These are some…..

I almost gave him an out.  Even though he promised to stay with me, I feared that this would just ruin his life. He was young….he didn’t need to deal with something so big.  Many nights when I couldn’t sleep I thought long and hard about this.  I loved him….but I wondered if I was wasting his life.

I thought about saying no when he proposed.  I’m still amazed that he did….it was the ultimate promise to be with me through it all….and starting with the sickness part! But I wondered if he was only doing it out of pity? Did he really know what a lifetime commitment to me meant with all the cancer stuff involved?  Again…..was he going to be wasting his life dealing with a woman who was losing so much and didn’t feel much like a woman anymore?

I was terrified he would be devastated if we couldn’t have kids. My treatment put me in to early menopause and it was never a guarantee that we could have kids.  Was this a deal breaker? Should I just let him go so he can find someone who could give him children? It was something we both desperately wanted…and it broke my heart if we couldn’t.

Life hasn’t been easy.  There have been many lows…..but also so many highs!  I’m so extremely blessed to have my husband by my side.  He has literally picked me up and walked me through some awful times.  He’s been so patient, understanding, and just plain awesome.  But he never knew my fears, and if he did, he’d probably tell me I’m crazy.  Which I am….but that’s another post for another day 😉

I’m so thankful to have him……and I try to push my fears aside, because I still have them. They creep up and fill me with worry and sadness.  But he’s still here….and I’m blessed.

Katie 🙂