Lymphedema: 2 Years Later And Still Not Over It

March 6, 2017 by Carrie 5 Comments

Last year I wrote a very popular post, Lymphedema And How It Changed My Life.  It went viral…well, as viral as a lymphedema post was going to get.  It resonated with a lot of people.  I wrote about how angry I was at getting lymphedema after being diagnosed  with breast cancer and going through hell to get it out of my body.  I wrote about how uncomfortable it made me feel in my own skin; how ugly I found myself.  I wrote about how its very presence was a daily reminder of my cancer and the fact that it could always come back to my life in a terminal form.  I wrote about how sometimes I thought I would rather not live at all than live with lymphedema for the rest of my life.

I want to say that a year later all is well.  I want to say that a year later I’ve come to terms with this condition and the fact that it’s never going away.  I want to say that it no longer reminds me of the cancer that is in my blood stream right now, hiding, sneaking in and out of my organs.  I want to say that a year later, it’s under control.  But I can’t say these things.  I just can’t.

It’s a year later and I’m still pissed off.  I’m pissed that I have to take time out of my week, twice a week to keep my lymphedema under control.  I love my OTs at Shechter Care with all my heart and they are amazing, but even they are hoping that soon they can get me to the point where I don’t have to come so often.  I’m pissed off that I have to take time out of my day, nearly every day to pump my arm.  I’m pissed off that I have to go to sleep every night with my arm wrapped.  I’m pissed that I have to roll my wraps every night.  I’m pissed that when I look in the mirror, one of the only things I see is my big arm.  Nothing else.  I’m still pissed off that this was done to me.  I’m still pissed off that I didn’t get the care I needed at a time when this could have been kept under control.  I’m pissed that I don’t feel beautiful.

I’M PISSED!!!!!!

There are some positives.  This year I learned to wrap my bandages myself.  While I hate doing it, it gives me a sense of control.  I’ve been able to get swelling under control that way.  I believe that with hard work the swelling will decrease.  It already has.  It’s just take a super long time on me for some reason.

I also think that there are a lot of advances happening within the medical field.  More and more doctors are starting to understand this condition and are acknowledging that it’s a terrible condition to live with.  There are more studies and trials happening.  They are perfecting the lymph node transfer and other surgeries (although I don’t feel confident enough in the science to do it myself yet).  There is hope on the horizon.  I truly believe that there will be some real help for men and women like me in my lifetime.  Maybe not a cure but something that will make living with this condition so much easier.

I struggle every day knowing that I have to live with lymphedema the rest of my life.  I get depressed often.  But at the same time, I have hope.  I have hope that science will make advances.  I have hope that my body will finally cooperate and that there will be a turning point in my care.  I have hope that I will get this under control.

Maybe not today.  Maybe not tomorrow.  But maybe next year, on March 6, World Lymphedema Day, I’ll be writing a different blog post.  Maybe I’ll write about how I don’t hide myself.  Maybe I’ll write that I don’t think about my arm and cancer all day long.  Maybe I’ll write about how I feel like I can live my life confidently again.  Maybe, just maybe, I’ll be able to write about a major medical breakthrough.

One year…I can do one more year.