Thursday, June 4, 2020

When I Wake Up: A Day In The Life of Lipedema

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My morning typically begins around 6 or 6:30am with a mad dash to the restroom to urinate, which is a good thing, it means my lymphatic system is still working.

When we sleep, we are elevating our legs, which gives the edema a chance to more easily move out of our system (i.e. the need to urinate). If you find yourself needing to get up in the middle of the night, I have found elevating my legs a couple hours before bed to help.

While in the restroom, I brush my teeth and wash my face. Then I start my Lipedema Self Care...

6:30am Pneumatic Pumping: 1 hour session, but to get it setup, get in the garment, and then get back out and put it away again, it is about 1.5 hours. If I have extra time, I can also do a pre and/or post treatment, but that can add up to 2 additional hours, which I have yet to find time for.

Using a vibration machine to treat Lipedema; self care ideas and a day in the life of a Lipedema patient.
7:45am Vibration Platform: I do (2) 10 minute sessions totaling 20 minutes, but I do some Lymphatic Yoga posses and stretching before and after, so lets call this 30 minutes. I purchased the Vibra Pro in 2014 after an FDRS Conference Vendor showed us how it could help our condition.

8:15am Percussion Massager: I do 5 minutes on each lower leg with my Wahl Massager, I really wanted the Hypervolt, but it was priced out of my budget; I start with some reflexology between my big and second toe. This is to try to break up fibrotic tissue. I also apply Lymphoderm Lotion to my lower legs after the massage, in an effort to keep them healthy and free from any Lymphedema complications like wounds or worse case scenario, Cellulitis. Let's call this 15 minutes.

8:30am Get Dressed: This is pretty self explanatory, but I have to first put on my Juzo Dynamic graduated compression, luckily I have been doing for years, so I've gotten pretty quick with it. But it can be challenging to get on; I had to make the decision to wear knee high garments for everyday, the full legging style I could not keep up, so I need more practice with doing so, but that will add in a fair amount of time to your day. Let's not forget I have to do my makeup and hair, that can sometimes get shortened if I'm running behind.

8:45am Leave for work: I am lucky in that I live 5 minutes away from work, and during the social distancing requirements I can do more self care before starting my work day at 9am.

9-3:00pm Working: This is typically my work schedule whether in the office or working from home. When in the office, I live in a beautiful town and have a nice walk into/out of my office, and a huge flight of stairs that helps keep my active during the day. 

Finding a good (but low cost) option to riding a bike, this one comes with a comfortable seat, too!
While at home I am thankful to have a dog that needs to go out regularly, and I have setup some at home movement options. Like a Rebounder (mini trampoline), a medicine ball for some slam ball in the breezeway, and recently a stationary bike that I can do a few minutes on.

3:00pm Dog Care: Whether I'm working and home by 3:30pm or working from home, she knows when it is her time. A fun time playing in the backyard, throwing the ball, that she doesn't retrieve, but instead makes me chase her around the yard (think she and my husband, who is also my coach, have a game plan to keep me as active as possible). Then feeding her and cleaning the kitchen/dining room. Luckily the cat seeks me out when she needs love, and my daughter takes care of her needs (liter, food, water, as all are in the basement, and it is difficult for me to do the basement stairs, they are narrow and the backs of my lower legs hit the steps as I go down, which is incredibly painful).

4:00pm Workout, Art, Read: We also have battle ropes, which I found I can attach to the garage door and get an excellent workout in, or do an At Home CrossFit workout, or dance around the kitchen listening to music (all movement is good movement). I love art and watch lots of art shows, learning new techniques, and sometimes even making something, or reading (I started a book club to help deal with the emotional side of the pandemic) It is called The Flu Fighters Book Club (see what I did there), and I have regained my love of reading, what a great escape during this social distancing time.

I also have a teenager at home, and spending as much time with her as possible is high on my list, so adjust all the above for that.

6:30pm is typically Dinner: I am super blessed that my husband loves to cook, and he is the maker of of our dinner. We sit at the table as a family every night and catch up and enjoy a nutritious meal together. Typically watching Bob's Burgers, Trevor Noah, Life Uncontained, or some interesting YouTube video our teenager wants to share with us.

8:30pm back to the start: I am getting ready for bed, or should I say round 2 of the pneumatic pumping. It is harder to do at night, when trying to spend time with your family, but don't want it to go too late so that you are keeping your husband up. You have to wear loose fitting clothing, so no compression, and socks, which I had to borrow from my husband, as when you wear compression you have little need of socks, so another component of pumping is changing your wardrobe before and after. It is not a huge deal, but it adds time, and when you just want to go to sleep it can become overwhelming.

Now all that being a typical day, I also like to try to get in some dry brushing, cupping, more stretching, reiki, etc. So any additional self care that my condition needs is on an as-time-permits basis, and on the days I am able to squeeze a shower in, something else has to be adjusted (aka, omitted). So regular self care is often a balancing act.

10:00pm Sleep: If I'm lucky I can get to bed by 10pm to try for that 8 hours of sleep, which is really important when you are battling a chronic illness like Lipedema. I usually read a little and hopefully fall asleep by 11, not quite the 8 hours, but typical of what occurs. I take vitamin D as prescribed by my doctor and do so before bed on an empty stomach.

The thing about Lipedema, is it zaps your energy normally, just living with the extra weight in your body, trying to go about your regular day (not to mention all the self care involved); then the added Lymphedema I have means I also have the toxins that do not get flushed out of my body like a healthy lymphatic system can do, so that also causes you to feel tired. But I am lucky, I don't have the restless leg symptoms others with Lipedema have, so they are constantly tired and trying to manage this self care diagnosis (which means we are responsible for the care and treatments we receive).
Lipedema Fitness has been spreading awareness for years, we even created the only Lipedema Triathlon in the world - with participants from all over the world!

Lipedema is a chronic and progressive condition. There is currently no cure. The sooner you can get diagnosed the better, as treatments work better on earlier stages, and you can do all you can to not progress to later stages. So I spread awareness as much as I can so nobody has to be diagnosed late stage Lipolymphedema like I was.

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