5.15.2016

Fat Lefty goes to Boot Camp

It's been over a year since my lymphedema diagnosis, and I am no closer to accepting the condition than I was when I got the news. My vanity takes a hit every morning when I get dressed, and every night when I stare at what a day full of gravity has done. The information contained in this blog is really only interesting if you have lymphedema, but feel free to read on till the end and see a photo of my legs.

I feel bad even remotely complaining about Fat Lefty, given that the only person who really notices how fat he is is ME. Short of really staring at my ankle while I stand in line in my skinny jeans at Target, the average American wouldn't notice my condition unless I pointed it out. I'm sure if I walked around with a pair of shorts on, most people would assume I had suffered some type of injury, and was wearing a sexy medical apparatus until it healed. I know my hardly-noticeable-fatty-leg does not compare to what many in the lymphedema community have to battle with, and try to accept every single day. If they can do it, who am I to complain an ounce.

This leads me to what I'm calling Mummy Leg Boot Camp, which starts on Tuesday.

Upon diagnosis, I was suppose to see my Physical Therapist every day for 2 weeks straight. It was during this time I would get daily MLD (manual lymphatic drainage) massages, learn to massage my own leg, and master the art of multi-layer wrapping, or what I refer to around here as the Mummy Leg. Due to reasons I won't go in to, I only saw my PT (also known as a Certified Lymphedema Therapist) twice, and was left on my own to learn MLD and multi-layer wrapping with the help of everyone's friend - YouTube. Because Fat Lefty quickly responded, fell into line, and fit back into my skinny jeans, I thought I was doing alright for myself.

Two months ago, I noticed that my ankle was far more swollen at the end of the day than normal. I did the math, and realized I was right at the 6-month lifespan of my compression garments, and ordered new ones - thinking that would resolve my issues. But the new garments didn't help, and my ankle continued to be just as fat at the end of each day. Thinking it was time to change up my game place, I made an appointment to see a PT, and our first meeting last week was overwhelmingly productive.

Apparently I was short-changed from the start, and it's about time I finally came in and learned how to properly take care of my left side companion.

I not only learned more about lymphedema in one session with him than I had learned through everything I'd read and watched, I learned I was doing it ALL WRONG. From the method I'd been taught for MLD, to the way I was multi-layer wrapping my leg. How dare you fail me people of YouTube! I also mentioned my observation that "gluten makes my leg flare," and he wholly agreed that gluten was an inflammatory agent, and applauded by intimate observation of what it does to my leg.

For all you gluten-free haters out there who want to throw me into a Portlandia skit right now, I have time and time again learned by trial and regret that within 48 hours of eating gluten, my leg with swell more than normal (or flare as we like to call it). And it takes a solid week of doing everything I normally do times two to get it back down to "normal."

How Fat Lefty survived his first year on this earth I will never know.

So here's how Mummy Leg Boot Camp is going to go down.
  • I'll see my PT 3 times a week for the next 3 weeks. This is the attention and education I should have had in those initial 2 weeks after diagnosis.
  • I'll learn how to properly give myself the most thorough MLD (that even involves massaging lymph nodes near my collar bone that I didn't even know mattered). This should hopefully make my bedtime MLD ritual far more productive at getting my ankle back down to normal. And when I say normal, what I really mean is having it not look and feel like a memory foam mattress, and maybe even seeing my ankle bone again!
  • He will help me refine my Mummy Leg wrapping skills. You know the ones I self-taught after a single lesson and a take home pamphlet with a few visual keys? He also noted (while measuring my legs for comparison) that my left foot itself is not affected by swelling at all, so adjusting the way I wrap, with less emphasis on my foot, may help the next item on this list.
  • He will hopefully help me wrap in such a way that I don't wake up in the middle of the night and rip my bandages off because they are causing me the most annoying pain on the top of my ankle. Ideally, I should multi-layer wrap every night and sleep in it, but because of this unexplained and annoying top-of-my-ankle pain, I don't bother. Instead, I do it inconsistently on days when I know I'm going to be lounging around the house - like chemo weekends.
  • I will be wearing the Mummy Leg as much as humanly possible for the next 3 weeks, and I've already negotiated with Merrick his fee for rolling the bandages for me every day. Rolling bandages is a chore. I liken it to jamming up your mix tape and having to bust out a pencil to get it rolled back up inside. This is wear the vast collection of maxi dresses I bought last summer come into play, as I can hide it all from inquiring minds as I venture out in public.
I'm calling this a boot camp, because it will ramp up the already obsessive attention I pay to Fat Lefty. He currently gets about 2 hours of undivided attention a day, which is far more than I give either of my poor kids:
  • I get up at 5:30 every morning, make my coffee, turn on the news, and pump my left with my Flexitouch for 60 minutes. Feel free to start texting me at that time, as I'm just sitting on the couch with nothing to do but attempt to catch up with the vast world of Facebook.
  • I wear my compression garment every single day. As I've explained in a past blog, this gives my left thigh and butt cheek an amazing profile.
  • I use a combination of MLD, dry-brushing, and elevation before bed.
I do obsessively take care of my leg, and I do it for the following reasons:
  • I want it to be and look as normal as possible.
  • I want it to fit into my vast collection of skinny jeans.
  • Vanity.
  • I want my skin to stay as healthy and normal as possible. Given that there are experimental surgeries out there to fix the damaged lymphatic system (in my case the missing 21 lymph nodes that were removed from my left pelvis when I had my colon resection), I want my skin to look good (and normal) for the day it might see sunshine again.
  • For reasons I don't quite know, lymphedema limbs are far more prone to infection. Given my already compromised immune system, a little infection of the skin could lead to me taking one of those glorious hospital vacations where I get room service, free cable, and all the heated blankets a girl could want. As delightful as that sounds, I'd like to avoid it.
I will easily admit that I take my bi-annual hair thinning and bi-monthly treatments in stride, but this whole lymphedema business is the BANE OF MY EXISTENCE. I personally know so many in the colorectal cancer world that have their own life-altering repercussions from this glamorous cancer, so I try and keep the complaining to a minimum about something that really only takes time and vanity away from me. I'm alive, so who am I to complain about anything really.

As promised, legs.

 



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