Name: Kiku Collins

Occupation: Musician

Location: New York City

When were you diagnosed with lymphedema? Or found out that you may be at-risk?

I was told that I was “very low risk”, given my love of exercise, my dietary habits, my BMI, etc. I was careful with my arm after mastectomy (which included the removal of 6 lymph nodes). I did all the “right” things, and even brought my family to a lymphedema workshop at our hospital to learn about it and hopefully prevent it. A few years ago, I started to really feel the heaviness to the point of not being able to deny it. I first wore a compression sleeve while flying for a gig (I fly a lot!) and thought that it would be enough to wear them while traveling. A few months had passed and I had gotten a call for 2 gigs in one week in DC - both were being televised. One was at the Kennedy Center and the other was my second time performing at the White House. I started to realize that I had anxiety about my arm. How will I endure that much time in rehearsal (I’d done both previously), and perform at my peak while underslept? I actually went to my horn repair man (J. Landress Brass in NYC) and Josh outfitted my instrument with special pipes so that I could hold my trumpet at a lower angle on my left (affected) arm. The left arm is the weight bearing one for many brass instruments. It gets exhausting. They actually make it a bit more difficult to play, but at least I can continue holding my instrument! I had a couple of days to practice with them on and it was a huge learning curve. But, it was worth the effort to learn for the sake of continuing my career.

How has lymphedema affected your life?

My career has been very difficult to maintain at the level I’ve gotten to, but this is likely the first time any colleagues or employers will know of it (and I hope they continue to hire and challenge me!). I honestly am not sure how I’ve kept it where it is - touring the world, playing on TV, lugging around equipment, hopping on and off planes, catching cat naps when I have no time for sleep… it’s been a real challenge. Everyday life never feels “normal”. I wear a sleeve/gauntlet while I’m out without fail and when I’m home, I’ll often take off the gauntlet, and sometimes go without any garments for a while. It really depends on how tired I am, how hydrated I am, how much MLD and exercise I’ve gotten in, and how clean my diet has been. It’s amazing how everything seems to affect my arm. I almost never drink alcohol - I feel it immediately on my arm. Once in a while I’ll have a taste of something, but not much more. It’s just not worth it. I also discovered that I have a wheat allergy, and it’s incredible when I’ve consumed some via accidental cross-contamination or a restaurant error. I’ve always known that it was some sort of a problem for me, but now it affects my arm, as well.

How do you manage your lymphedema?

I work out almost daily - weights and cardio. Sometimes I’ll be on an elliptical and will just start shaking my arm around. I really don’t care what others think of me - I know of people who don’t wear their compression garments because they don’t want to “look different”. Honestly, I live in NYC. Everyone looks different! Thank goodness for Lymphedivas - I’m often asked about my cool sleeves. I also purchased a vibrating platform and when I have the time or when my arm is feeling funky, I will stand on it - sometimes passively, sometimes exercising. I also have a pump. I’m busy and not very good at resting, but when I need it, it’s incredible. Manual Lymph Drainage by my husband - it’s great! I do it myself when on the road or he’s on a gig (another musician), but it’s honestly not the same. It all matters and it all helps. Keeping a low inflammation diet, intermittent fasting, hydration (I’m a sucker for coconut water!), and having cool looking garments really helps! I haven’t had to wear my awful night sleeve (which I have named Frankenstein) for a long time now! I sleep with a bare arm, sometimes propped up on a pillow or two.

What’s your best advice about living our best life with lymphedema?

Never compromise your health and comfort just because you’re afraid people will look at you or ask questions. I hear it often. Somedays, I don’t want to talk about it or answer questions, but I have a pile of semi sheer blouses to wear over my tank top (kind of my uniform - especially since menopause!) so it sort of hides the lines, or blurs them at least. I almost always have headphones on, so it’s a “get out of conversation free” card, if I need it. I don’t like being rude, but some days, I’m just not there!

What’s your favorite thing about your Lymphedivas garments?

How much better my arm feels! My first sleeve was a well known brand, and it made me break out! Lymphedivas aren't hot, they're very soft, and so cool looking.

What’s your favorite Lymphedivas style?

Everyday is a chance to make my sleeve an expression of me! I have many looks - on stage and in real life. I don’t know if it’s possible to have a favorite, but I did wear my custom Ninja Princess sleeve to the Grammys this year, and it looked like a very elegant part of my asymmetrical one shoulder gown! I love all of my Lymphedivas styles - classic, goofy, elegant, sporty.

Where can we find you?

You can follow my facebook fan page for information on shows, fundraisers, and other fun stuff: www.facebook.com/NinjaPrincessKikuCollins

My instagram to follow my adventures @Kiku333

Twitter @KikuCollins

I’m constantly on the go, and I can barely keep up with myself!

Any other tips, tricks, or words of advice?

Don’t worry about what others think of you. Be you - if you have lymphedema, that’s part of you! If you care for your arm and wear your compression, you'll feel so much better, physically and mentally. Worrying about what others think of your arm only hurts YOU. Some people may be curious and others may be inappropriate. I try to adjust my responses accordingly.