World Lymphedema Awareness Day

learnawarenessHappy Lymphedema Awareness Day!

Today is a day for us to join together and use our voices not only to spread awareness about lymphedema, but to celebrate our amazing community.

Established by the National Lymphedema Network in 1994, Lymphedema Awareness Day is specially designated to honor lymphedema patients and our health care providers.  It’s also a day for us to raise our voice, let the world know that we’re here, and that we deserve treatment, insurance coverage, and support for this condition.

Lymphedema affects millions of people worldwide and can be caused by injury, trauma, or congenital defects in the lymphatic system. Despite the numbers, lymphedema goes largely unrecognized, especially by doctors and insurance companies. Oftentimes a patient can remain undiagnosed and untreated for years (like I did!).

Lymphedema sucks! Even if people notice that one limb is larger than another they have no idea the impact Lymphedema has on everyday life. Many of us put on long skirts, loose pants, or long sleeves and a big smile on our faces, hiding the effort it took to look presentable. There are also many with Lymphedema who experience pain and when cellulitis, this can impact our plans, social engagements, and everyday life. People with Invisible Illnesses, like lymphedema, often do not get the support or understanding they need. All of us with lymphedema need to speak out and share our stories to bring understanding to this little known illness…Lets make lymphedema less invisible.

Life Aquatic

Sorry I missed last week.   I’ve been battling a sinus infection on top of Easter with the family.   It has been a crazy week or so.   I am feeling better and it is time to get back to working on me and my various projects.

About a year and a half ago I was having a rough time swelling wise and was back in therapy.  Only this time it was different.  For 45 minutes before I was wrapped, I did aquatic exercises in a heated, saltwater pool.  This did wonders for my lymphedema  and other issues.  So much, in fact, I continued paying to go as a community member after I was discharged.  I stopped going in November/December when I was having all my GI issues.   I am ready to go back.

Of course everything I find is old and for breast cancer patients, but it works well.  It helped strengthen my back and improved my mobility.  The other benefit was weight loss.  I tend to go on a Monday/Wednesday/Friday  in the afternoons, because the place I use is less crowded then.


Personal goals need to be expressed and merged with those of the therapist or personal trainer who works with an individual who has lymphedema.

In general, goals include:
• Pain reduction
• Increased range of motion
• Increased strength
• Increased cardio respiratory conditioning
• Improved posture , balance and energy
• Education/tools re: weight management and nutrition
• Increased relaxation and stress management
• Outlet for support/social/outreach

Some specific goals include:
• To restore proper bio mechanics, increase range of motion in the shoulder
• Improve strength/endurance of injured and supporting muscle groups
• Improve lymphatic flow by movement through the water, use of hydrostatic pressure, turbulence and muscle activation
• To reduce susceptibility to hypo-kinetic disease with cardio vascular exercise
• To lose body fat, increase lean body mass to reduce risk of lymphedema and breast cancer recurrence

You can read more on aquatic therapy/exercise here.  You can read why aquatic therapy works here.

It’s the Most Wonderful Time of the Year…

Not really.  It’s time to reorder socks.   I hate reordering socks, especially the first order in the new year.  I think we have met our deductible.  (I had have a MRI and colonoscopy earlier this year. They were kinda pricey.  Yay,  turning 40?) I hate the whole sock thing, but I know I need to wear them.  I miss real socks…The soft, warm kind, millions of people wear everyday and take for granted.

My first few years, I got the black compression socks.  I would kind of tell myself I was like the cool young kids.  The trend at the time was the long black athletic socks  with the basketball shorts.   I seem to have moved into beige land.   The last two times I have ordered socks, I have asked for black socks, but have gotten the dreaded beige.   I hate to return them and have them replaced, because they are custom ordered and take forever to get.

The whole garment thing sucks too…its kinda geared towards the ladies.   Knee-highs, thigh highs, and panty hose doesn’t sound like anything most guys want to wear.   My wife doesn’t help anything and calls them sexy socks.   I’m just grateful we have decent enough insurance these days and I’m not paying the $600 a pair for them anymore.



Lymphedema Treatment Act

Having lymphedema isn’t cheap.  There are all these wrappings,Custom or Standard Fit garments,  Non Elastic/Low Elastic Compression Garments, therapy (physical and sometimes mental), and compression therapy pumps.  They are all very expensive and most insurance doesn’t pay for them.


This is where the Lymphedema Treatment Act comes in.

Why this Legislation is Needed

Currently, Medicare, and consequently many other insurances, do not cover one of the critical components of lymphedema treatment, the medically necessary doctor-prescribed compression supplies used daily in lymphedema treatment.

What the Lymphedema Treatment Act Will Do

The Lymphedema Treatment Act (LTA) will improve coverage for the treatment of lymphedema from any cause by amending Medicare statute to allow for coverage of compression supplies. Although this legislation relates specifically to a change in Medicare law, it would set a precedent for Medicaid and private insurers to follow.

Ask Your Members of Congress to Support the Lymphedema Treatment Act

This is a patient-driven, grassroots effort and our success depends on people just like you getting involved! Please consult our How You Can Help menu to the left, and use the resource materials provided below, to persuade your members of Congress to cosponsor this bill.

I am a State advocate for Maryland.  I have been for about three years now.   Even with my wife’s health issuance we are still shelling out about $1200 a year for compression stockings.  It also helps make people aware of what lymphedema is and and how it affects people.

Sadly, in my Congressional district, my congressman, who what a doctor, doesn’t support the LTA.  He hears from me a lot, in email, on Twitter, and on Facebook.  I like to think of myself as a yappy little dog chewing on his pant leg. The more I bother him, the more likely he may be to listen to me.

No More Taboos

pexels-photo-356079.jpegI got a comment last week and it got me to thinking…why don’t guys talk about health issues? Especially ones that are traditionally considered “women” health are very taboo.  Guys get lymphedema…guys get breast cancer…guys get depression.  It sucks, but it needs to be talked about more.

I grew up in an age where you “walked it off”, “rubbed some dirt on it”, “only sissies cry”…etc. I’m an Xenial, my parents were baby boomers, raised by the “greatest” generation.  Got a scraped knee? Lets pour liquid fire on it, but don’t you dare cry, because only girls and sissies cry. Stuffy nose and cough? Drink some burning hot tea with honey and whiskey in it, then shut up about it.   The thing is, this attitude is killing us.

Us dudes don’t like to talk about what is wrong, especial to our pals or the doctor.  I will admit I am more comfortable talking to a female doctor or my gal pals than my male counterparts.   I was reading this article… 53% of the guys the surveyed were not comfortable talking about their health.  Around 60% only go after a symptom/problem is unbearable and 20% go because their significant other nags at them.  I’m thinking the number would probably be higher if they had surveyed more people.  If I had went to the doctor or talked with people sooner, I may have not had my brush with death and a PE back in 2007. I still probably not known about lymphedema, but I would have started seeking answers sooner.

I’ve gotten better about talking about health issues since then. My wife is a healthcare worker and I ask her questions all the time.  I have a female doctor now as well.  I was weird about it, at first, but I have discovered female healthcare workers LISTEN. That’s a very important thing when seeking healthcare. I think most people except this as a norm.  It shouldn’t be.  Your healthcare professionals job is to LISTEN and come up with a fix for your health issues.

Men in general need to break this taboo.  I promise it won’t kill you to tell your buddy you are having chest pains or you are feeling a down.   The world isn’t going to end if you go to the doctor and tell them you don’t feel good. (This goes for mental health too!!!)  I went to the doctor earlier this year and flat told her I was having issues when I was in the bathroom.  I suffered the indignity of a colonoscopy, but I have the satisfaction of knowing I don’t have cancer.  You need to take care of your health.  The silence has to end.  It’s killing you, dude!


Dayuuum Fluffy

I’ve always been a big dude. I wasn’t obese as a kid per say, but I was always heavier than the other kids. Weight has always been a struggle. I played a lot of sports growing up. This helped keep my weight in check in high school.

I fall between Fluffy and Daaaaayum!

So being damn fluffy is not good for lymphedema. Of course I can’t find any info relating to men, but this is what I found:

There is quite a bit of evidence that being overweight prior to treatment for breast cancer or gaining weight afterward increases the risk of developing lymph-edema after breast cancer treatment. The good news is that studies have also indicated that if you do develop lymph-edema, losing weight can improve the swelling more than you might expect. Studies of weight loss in individuals with breast cancer-related lymphedema have shown that even modest weight loss, for instance between 7 and 12 pounds, led to significant improvement in arm swelling. And you can also add regular exercise to enhance your weight loss regimen, since studies also show that if exercise (including arm exercise) is performed properly, it does not seem to increase the risk of getting lymphedema or make pre-existing lymphedema worse. In fact, for some patients who have had treatment for breast cancer, upper body exercise may diminish symptoms of lymphedema or even reduce the risk of developing lymphedema in the first place. So add a weight loss regimen and regular exercise to your lymphedema management routine and you may see further improvement.

Weight loss is a huge struggle, the thing is, dudes don’t like to admit it.  I’ve looked into weight loss surgery twice. Something always seems to shoot me in the foot.  I was supposed to go to another weight loss surgery seminar this past Wednesday, but I cancelled.  I need to get some other things fixed in my life before going through that process again.

There are a few things out there about diet and lymphedema. Every is different and there is no one true way.  The biggest issue I have is salt.  Salt makes me balloon up like a Macy’s Thanksgiving Day attraction.  I’ve never been a big salt user, but everyone gets that salty craving sometimes.  My weakness is chips; potato or corn it doesn’t matter.  I’m also horrible about drinking enough water.  I know need to drink water for more than lymphedema  reasons, but coffee.  As for information on diet and lymphedema, everything out there is pretty dated and 95% geared toward women. (Again nothing against the ladies, but we all know men and women loose weight differently.)  It’s a bit dated, but there is a good article over on Live Strong about dieting and lymphedema.   You can check it out here.



A Little More About This Dude

So more about me…I think I said I’m 40.  I’ll be 41 in July.   I spent the first 18 years of my life in rural Indiana.  It wasn’t always a happy childhood, but I survived.  It made me a fighter. I moved around a bit in my early 20s mostly living in Ohio.

I moved to Maryland in 2004 after I graduated college.  I worked hard and partied harder.  I usually went through days on four to five hours of sleep. I ate terribly and I smoked.  Other than moving around at work, I didn’t exercise much.  In 2006 I decided to quit smoking and succeeded.  I just noticed my legs swelling and getting tight in my work pants.

I had to call off work one morning, because I couldn’t get my pants over my calves.  (This had happened a few times before in my early 20s. The doc said I had a kidney infection and sent me on my way.)  I made a doctor appointment.   Doc said she didn’t know what was wrong with me and was going to send me to a vascular  surgeon. I had a few varicose veins and she thought that may have something to do with it.  Long story short, my legs went back to normal and I  never made the appointment.

My legs started swelling again, but I could wear work pants and didn’t give it much thought.  It was Christmas season and I was working a lot of double shifts, on my feet, on a cement floor. I mentioned it in checkup, but my weight was mentioned and my unhealthy lifestyle.

February 18, 2007 I felt weird.  I passed out while putting clothes in the dryer.  I came too and felt really weird.  I tried to make it to my bed to lay down and passed out again.  when I came to the second time, I tried to call my fiance at the times’ mother. (we were living in her basement.) She didn’t answer thinking it was a butt dial. I somehow crawled up the stairs and made it to the hallway.  Finally got someones attention.  911 was called, but I refused to transport, because no one would call my fiance.

I felt odd for days, but managed to go back to work.   I passed out a few more times, but nothing too significant. I went to the doctor, but she was on vacation and had to see the nurse practitioner.  My Bp was through the roof and my resting heart rate was insane.  NP said I had bronchitis, my legs were huge because I’m over weight, and sent me on my merry way.   The next day I ended up at the ER and was in the hospital for a month.   I had a Large saddle pulmonary embolism. I almost died.

My point of this long story is: I had an undiagnosed blood clotting disorder (Factor V Leiden).  Undiagnosed Deep Vein Thrombosis (DVT) is what caused my secondary lymphedema.

I had to almost die to find out I had lymphedema.

Let that sink in folks.