Lymphedema & the “Anger Phase”

There are very few things I remember from that visit to the MD a few years after my diagnosis (the only MD in the state of Vermont who specialized in lymphedema). I’m guessing at the time I was a freshman in college, so I was probably 18 years old.

She told me it really wasn’t a good idea to play rugby (check!), that I should never shave with a razor (umm….still working on that) and that I was still in the anger phase.

Excuse me, the WHAT? Continue reading →

Lymphedema & Rugby

You’re probably thinking this is an unlikely combination. And well yes, it is.

Back in my freshman year of college I still wasn’t paying all that much attention to my lymphedema. I rarely wore my compression stockings (that hasn’t changed…oops), saw my physical therapist a couple times a year (if that) and wore my night garment once in a blue moon (if I was lucky…oh, and back then I only had one leg garment…despite the fact that my lymphedema is in both legs).

ANYWAY, suffice it to say lymphedema was not on the top of brain. Instead, I had just started college and I wanted to fit in. I knew I would find friends in the music world, but I saw college as a fresh start to find friends elsewhere, maybe even join a sports club. And that is just what I did!

The girls on the rugby team were all so welcoming — and might I say they were quite excited to have a walk-on of my stature/build. My rugby nickname was coined without much hesitation. “Big Girl” it was. Yeah…….. No one on the team was over probably 5’8″, so I was a welcome addition to the roster of locks (I’m 5’11”).

I really enjoyed the community and the forced physical fitness. But it all went sour one day in practice. I went in for a tackle, and as many rugby players have done many a time, I ate it.

When I realized there were sizable cuts on my left leg (the leg that is worse), I absolutely freaked out. I insisted that I see a doctor, but it was Sunday so the only place I could see was the emergency room. The doctor confirmed I had a mild concussion, contusions and an abrasion the size of a baseball on my left knee.

I hobbled around for the next few days with the most awkward bandages on my knee. I watched practices and matches from a distance. And then I realized what I had to do.

Injuries in rugby are inevitable. In fact, they say you’ve never really played rugby until you’ve had a concussion. And the small things like cuts and bruises happen all. the. time. They’re unavoidable. But the difference is that a cut on my affected limb could mean a lot more than just Neosporin and some bandaids. It could mean an infection. It could mean cellulitis. And what if I sprained my ankle? Who knows what that would lead to.

What I realized is that although this was fun while it lasted, it wasn’t worth constantly risking my health. So I decided to quit. Although embarrassed I never actually made it to a match as a player on the field, I knew it was the right decision. If rugby had been my calling and there’s nothing else in my life that could fulfill me the way rugby did, then maybe I would have tried to make it work.

The thing is there are a lot of other things in my life that mean more to me than scrums and rucks and mauls. When you have lymphedema that is just one of many similar choices you have to make. Having lymphedema has some limitations, but it’s up to you to decide what you can and cannot live without, and then you make it work.


Have you ever had to make a decision like this? What was it?

 

Motivation Monday — July 28, 2014

 ~ On Mondays (Motivation Monday!) I write a post with a quote to motivate and inspire. Sometimes it will be something directly related to living with lymphedema, and sometimes it will just be because I like the quote. But it will always be something worth sharing. ~


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“Be yourself. Everyone else is taken.” — Oscar Wilde

So simple, yet so hard. In a society that is driven by the individual, we still try so hard to look like the people in the magazines and not be too different. It’s hard to do your own thing and not care what anyone else thinks. It’s hard to do you, but at the at the end of the day it can be the most rewarding feeling in the world. Knowing that you were true to yourself, that you were true to your convictions, you are left with a sense of accomplishment and a feeling of peace with yourself that cannot be replicated by anything else.

 

Snapshot Sunday — July 27, 2014

~ On Sundays (Snapshot Sunday!) I post a few photos from my life in the hopes you get to know more about me beyond the lymphedema.  Sometimes with a few words, sometimes without. I am more than my lymphedema, and so are you. ~


A few snapshots from my latest trip home to VT…

The love of my life, Ziggy

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My mom’s famous lemon cake

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This is by far one of my favorite recipes ever — my mom’s famous lemon pound cake. It may not actually be famous in the traditional sense, but it’s famous in my book. My mom (Hi, mom!) loves anything with lemon, and believe me, she’s doesn’t skimp on the lemon. So if you’re not a big fan of lemon or tart desserts, I would suggest skipping this one.

The pound cake recipe itself is standard, but it’s what my mom does after the cake is out of the oven that makes it extra special. The first glaze (made with granulated sugar) seeps into the hot cake through holes poked with a fork and when cooled creates a sugar “crust” on the outside. The second glaze (made with powdered sugar) creates a more frosting-like layer on top and adds a decorative touch.

Ingredients:

3 cups all-purpose flour

2 tsp baking powder

1⁄2 tsp salt

1⁄2 lb. (2 sticks) butter

2 cups granulated sugar

4 eggs

1 cup milk

Finely grated rind of 2 lemons

Glaze 1: 1 cup lemon juice, 1 cup granulated sugar (or more depending on how much glaze you want)

Glaze 2: 2-3 cups powdered sugar with just enough lemon juice to make a thick glaze (or more depending on how much glaze you want)

*Note: I am lactose intolerant so I have used non-dairy butter and milk with the recipe and it works just fine!

Instructions:

1. Adjust rack to 1/3 up from bottom of oven. Preheat oven to 350 .

2. Butter a 9 x 3 1⁄2-inch tube pan and dust it lightly with four. (This part is VERY important otherwise the cake will stick to the pan!)

3. Mix together (or sift) flour, baking powder, and salt and set aside.

4. In a large bowl or electric mixer cream the butter.

5. Add the sugar and beat for 2 to 3 minutes.

6. Beat in the eggs individually, scraping the bowl as necessary with a rubber spatula to keep mixture smooth.

7. On the lowest speed alternately add the dry ingredients in three additions and the milk in two additions, beating only until smooth after each addition.

8. Stir in the lemon rind until the batter is just combined. (Be careful not to over mix!)

9. Turn the batter into prepared pan. Level top by rotating the pan back and forth.

10. Back for 1 hour and 10 to 15 minutes, until cake tester comes out dry.

11. While the cake is baking, prepare the two glazes.

12. Immediately after the cake comes out of the oven (and while it is still in the pan), poke the top with a fork (or something else with long, skinny prongs) a couple times and cover with roughly 1/3 of the first glaze (the granulated sugar glaze). **I would recommend putting wax paper under the cake in case any of the glaze seeps through the pan.**

13. Let cake stand in the pan about 3 minutes and then cover with a rack and invert. Remove pan, leaving the cake upside down. **Again, I would recommend placing wax paper under the wire rack to catch the excess glaze.**

14. Poke holes in the bottom of the cake with a fork and use roughly another 1/3 of the granulated sugar glaze to cover the bottom. Let stand for another few minutes.

15. When the cake is cooled a bit more, invert the cake again onto the final serving plate you want to use. **I recommend something with a lipped edge (like a plate) to catch the excess glaze that comes off the cake.**

16. When on the final serving plate, drizzle the top of the cake with the final 1/3 of the granulated sugar glaze.

17. Once the cake is fully cooled (the cooled part is very important here!), drizzle with the powdered sugar glaze. You can make this glaze as thick or as thin as you want. I like to make it just thick enough to drizzle so that it is opaque enough to see the glaze (makes it look prettier and creates a thicker layer of frosting).

18. And finally, enjoy! I like the cake even better the second day, so you can definitely make this the day before. The granulated sugar glaze then has enough time to completely cool and create the delectable “crust” on the outer edge of the cake.

If you try this recipe, please let me know how it goes!!

 

Wearing lymphedema proudly

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Last week when Miss Idaho Sierra Sandison proudly wore her insulin pump on her bikini in the 2014 Miss Idaho Competition, she not only inspired those with diabetes, but she inspired me. There are  many medical conditions where the treatment is not always so easy to hide — whether it be an insulin pump, a colostomy bag, or compression stockings.

When I was first diagnosed with lymphedema and the swelling was only in my right leg, I was much more nonchalant about wearing my stocking with shorts or a skirt. But once the swelling was in both legs and I was a full-fledged, super self-conscious high school student, I wasn’t so willing to advertise my stockings.

Ever since then the only time I ever wear my stockings is under pants. Full-length, fully opaque pants. It wasn’t until recently that I have even felt comfortable putting on/taking off my stockings around others. I always get the funniest questions about the gloves I use to put them on (gardening gloves) — have to laugh about those!

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Shortly after reading about Miss Idaho and her insulin pump I stumbled across a couple of blogs about some ladies (also in their 20’s) with lymphedema. They posted the following pictures that I found so inspirational I just had to share (I hope you don’t mind, Lauren and Alexa!):

The first is the blog Lauren: That’s Swell and her Twitter page Lymphoedema Fashion.

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The second is Alexa’s blog, The Lymphie Life.

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When I saw these photos, I have to admit my jaw dropped. YOU GO GIRLS!!! They’re both so proudly wearing their bandages/stocking, even in shorts and a dress. Couldn’t believe it! To Lauren and Alexa — you have no idea how inspiring this is to see!!

As my I build my self-confidence and pride in my story, I hope to one day be as brave as Sierra, Lauren and Alexa.


Tell me how you wear your lymphedema proudly!

Weight Loss Wednesday — Day 1

~ On Wednesdays (Weight Loss Wednesday!) I post about my weight loss progress. I am sharing my weight loss journey because it is a part of my lymphedema story and my greater journey in life. I am on a mission to be the healthiest I can, both inside and out. And I won’t give up! ~


I have always been slightly overweight (technically obese according to the BMI chart) and self-conscious about my weight. At 5’11” and having one of those what I like to call “big boned viking frames,” I hide my extra pounds pretty well. But, it’s time to get serious about my health. I’m not looking to be a specific size, I just want to get to a healthy weight and a healthy body (inside and out).

Currently at my highest weight ever (237 pounds), I’m ready to make this my final weight loss journey. I plan to follow Weight Watchers (with an emphasis on eating a whole foods, plant-based diet, albeit not 100% of the time) and exercise to lose the weight. I am also an emotional eater (and binge eat), so there are definitely some psychological parts of being overweight that I will need to overcome.

Without a doubt I am one of those people that (sometimes) thinks that being my ideal weight will automatically make me a happier person. I realize this is not true, but as it relates to my lymphedema I believe there will be some major positives effects. First of all there is the obvious benefits of being a healthy weight and just plain being healthier. I cannot make my lymphedema go away, but I can control my weight and what I put in my body. I 100% believe that you are what you eat, so it is my goal to get to the point where I am feeding body to fuel it, not to simply make me “happy” and suppress my feelings. To me this means lots of fruits, vegetables, legumes, nuts, seeds, with the occasional locally-sourced animal products (I am lactose intolerant, so I keep dairy to a minimum to begin with). By fueling my body as best as I can, it can be as strong as it can to fight off diseases and (hopefully) help my body stand up against my lymphedema.

The other benefit of being an ideal weight is a psychological one. I am hoping that by being happy with my weight, it will help me be more confident and open with my lymphedema. There are situations that I avoid today that I tell myself is because of my weight, which sends me into a deeper hole when it comes to being open with my lymphedema. Weight loss is not a magical cure to accepting and being proud of my lymphedema story, but I certainly think it will help.

My lifetime struggle with my weight is something I’ve always been ashamed about and much too shy to share with anyone other than my closest, dearest friends and family. In fact, the two sorest spots in my self-confidence are my weight and my lymphedema. And on this blog I confront both issues head on, at times with reckless abandon.

STATS (as of July 23, 2014) —

Weight: 237 lbs

BMI: 33.1

Dress Size: 14/16

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Waist: 38 in

Hips: 46.5 in

Bust: 44 in

Thighs: 29.5 in

Arms: 14.5 in