Kicking cancer's ass - day 1876

I know I'm starting to sound like a broken record, writing about lymphedema, but that's the thing with a chronic disease.... it doesn't ever go away.  The swelling is always there, my arm never feels "normal", and wearing compression garments is a necessity every day.

If you only knew how uncomfortable it is...
If you only knew how self-conscious it makes me...
If you only knew how frustrating it is...
If you only knew how expensive it is to manage...
If you only knew how many times I am asked "what's wrong with your arm?"...

I belong to a lymphedema support group on Facebook and I'm going to share part of a post that echoes how I feel on a daily basis:

Okay what motivates you to keep going and never give up. Some days I’m good. Other days I am just so flippin’ tired of this. I don’t have the energy to pump and massage and dry brush and lotion and wrap and it’s just too much!!! Feeling very defeated this week! I am in pain 24/7. 

My family is supportive but no one completely understands the challenges/struggles both mentally and physically (except all of you). Ugh! Gotta get out of this funk...

I had never even heard of lymphedema until my BFF developed it after one of her surgeries.  Most people who ask me about my arm have never heard of it, and I get a blank look when I try to explain.  I've resorted to giving a simplified answer such as "I had surgery and now my arm swells".    My compression garments are supposed to be worn every single day.  I should be bandaging (which involves layers of padding and ace bandages), but most of the time I just wear my sleeve and glove.  Those are supposed be replaced every 4-6 months.  My custom garments cost over $300.  The pump that I have was over $900 (after insurance).  I don't use it every day like I'm supposed to because a) it's a hassle putting it on and taking it off and b) it takes an HOUR to go through the entire programmed cycle.  There is exactly ONE lymphedema specialist in Abilene.

I found a web site that posted these "10 things I wish people knew" about lymphedema.  These are exactly the things I wish everyone knew about lymphedema.   It's not life-threatening and the stage of my lymphedema is not as severe as others.....but it *is* a struggle every single day.  

Lymphedema takes a toll.... physically, emotionally, financially.  There is no cure, so the best I can do is try to manage it and hope it doesn't get worse.  Making the best of it gets old sometimes.