My Lymphedema Diagnosis

The past 2 weeks have been eye opening, scary and uncertain.  I was diagnosed 2 weeks ago with Stage 3 Primary Lymphedema.  I immediately started reading everything I could find on the subject and getting more and more depressed about it.

A little back story:  I played softball and was really active growing up.  I was a pitcher and my parents spent a lot of time and money on my lessons and it was so much fun.  I am very competitive and really pushed myself at everything I did.  Even though I don’t feel like I was naturally very athletic, my will to succeed and my support of my family really helped me to excel. My teenage years (around the time I hit puberty)  I started gaining weight in my legs.  It happened gradually and to everyone around me (including myself) It just seemed like I was getting fat.   I had always taken a lot of pride in my appearance and this was a difficult time.  It got harder and harder to find things that fit my body right because my lower body was growing at a rate faster than my upper body.  Running and stealing bases for softball became increasingly more difficult.  I started crash dieting.  But no matter what my weight was, my legs and ankles never got any smaller.  In fact they continued to get bigger.  By the time my junior year rolled around, I was no longer able to wear dresses.  In fact, I wore a pant suit to homecoming and skipped prom all together.

Homecoming ’99

I know weight loss is difficult for everyone.  But as someone who is SO stubborn and determined, it really affected me that I couldn’t ‘beat this’.  In college, I became severely depressed.  I was no longer playing softball so I naturally gained weight just like a lot of people do.  This made my legs so much worse.  Even the simplest tasks were becoming more and more difficult for me.

I ended up not finishing school and got a job waitressing.  The combination of waitressing, being on my feet so much and doing the low carb thing, got me to my lowest weight in years.  My legs and ankles just got bigger.

I moved back home to help my parents run their businesses and ended up meeting and marrying Uncle Bee 😉  The best decision I ever made.  He is my rock.  During my pregnancies, my legs and ankles got even more swollen and heavy.  I stayed busy raising kiddos and just tried to be the best wife, mother, sister and daughter I could be.  In the back of my mind, I was starting to realize there was something else wrong.  I was running on the treadmill, doing spin classes and zumba and nothing I tried would change my legs.  The difference in my legs and the rest of my body had gotten so severe that it was getting harder and harder for me to hide it under my layers of clothes.

 Posing for pictures, became just of my face only and I became more and more depressed and started gaining more and more weight.  And I just hid behind layers and layers of clothes.  At this point, those around me even started to notice.  I remember the first time I raised my pants leg and showed my sister.  Her startled reaction scared ME!

That day, seeing her reaction, we started researching and trying to figure out what was wrong.  2 weeks ago I got my diagnosis.  It turns out I have something very rare called Stage 3 Primary Lymphedema.  Most lymphedema cases are secondary lymphedema that is caused from cancer surgery or an injury and easier to diagnose and manage since caught early.  Primary Lymphedema is harder to diagnose because it just looks like someone is gaining weight until it gets to the later stages.

I am still learning a lot about the disease, so I am not even going to try to explain exactly what it is, but I do know the type I have, you are born with, but it doesn’t start showing up until puberty and then gets worse with every consecutive pregnancy (something to do with hormones).  I wish I hadn’t been ashamed and tried to hide if for so long.  It would be way easier to manage, if I had been diagnosed sooner.

There is no cure, but it can be managed by wearing compression garments 24/7, pneumatic compression devices, and lymphatic massage therapy.  I had my first therapy session which included all of these treatments yesterday.  I am training for a 5K that I am going to run with my sister and my daughter in June.  I have to wear the compression garments during my exercise or it will make the problem worse instead of better.

1st Day of Lymphadema Therapy, on the left is the pneumatic compression machine and on the right, my new normal, all wrapped up in 3 bandages on each leg.

I am really scared.   I know this is going to be a lifelong battle and the end result could be immobility.  All I keep thinking about, is I want/need/yearn to be here for my kids and hubby.  My kids are 10 and 5 and they need their mother.   I am doing exactly what the Drs and Nurses tell me to do.   It is still too early for me to know if/when their will be any changes to the blog.  I don’t anticipate there being, but family and my health comes first, of course.  So I wanted to keep y’all up to date on my life, so if I do lay low for a few days or get behind, y’all will know what I am dealing with behind the scenes.

Please pray for my family as we make this transition to a new normal.

Edited to add: Thank you, thank you for all your messages, emails, prayers and words of encouragement! I felt so vulnerable putting my story out there.  But I knew in the back of my mind, if by telling my story, I could help one person to recognize the symptoms in themselves or someone close to them and possibly get an earlier diagnosis than I did, it will all be worth it. Thank you all! <3 Aunt Bee