Exactly one year ago today, I received the diagnosis that I have (stage 1) Lipedema. I had no idea what it was at the time, but the more I learned, the more that so many things with my body now made sense; however, knowing, didn’t make it any easier. Lipedema is a rare autoimmune disorder related to adipose tissue, and the lymphatic system. Much like my pancreas is (extremely) lazy, my lymphatic system is as well. Meaning when my tissues have fluid in them, they can’t drain themselves and filter properly. If I am sick, it’s rough because all of that junk just sits and goes nowhere. Toxins galore. In addition, I have to infuse insulin to live because of type 1 diabetes, and this causes issues with inserting insulin pump sites. More often than not, they’re painful, bloody, ooze, bruise and don’t work well. Not ideal when you need it for survival.
Probably since I was about 14 years old, my lower legs have always been what I called “puffy.” (ask anyone that knows me well, I have never worn shorts, or really shown my legs at all). Less so when I get up in the morning, but by the end of the day, swollen. They’re very sensitive to the touch and bruise very easily. I was always told I just retain water and should take a diuretic. I’ve also always had hips, not necessarily a bad thing, but if I gain weight, that’s the very first place it goes. What I didn’t know, is all along I’ve had Lipedema. It isn’t just, “oh, it runs in the family,” or “all women gain weight there first,” it is actually something else.
There is no cure, and it’s pretty misunderstood as to what causes it. I can tell you, that it probably scares me more than type 1 diabetes. There, I said it. One year into the diagnosis, I still can’t think much about it in one sitting, because I become so totally and completely overwhelmed. (See why here). I had a few doctor’s appointments, was fitted for medical grade compression stockings, and was given a plan to begin lymphatic drainage massage/decongestive therapy. My doctor, who is extremely well respected and amazing, moved to Arizona to continue her research-welp, there went one of the only local San Diego Lipedema doctors that knows anything about it! I got my compression stockings (from the high waste to the ankle) that I’m supposed to wear daily. I put them on at the doctor’s office, and haven’t touched them since. They’re itchy, so tight I can barely breathe, and just downright horrible. No way in hell I’m wearing those every day underneath my regular clothes. And I never completed the lymphatic drainage massage/decongestive therapy-again, very few people that can do this effectively, AND it had to be 4-5 times per week for up to 6 weeks. Argh.
So, I just decided to continue on my path of healing my body with food, and getting more and more clean with eating and lifestyle choices. It’s been a very slow transition, but the effects are becoming more and more evident. Not having done anything that the doctors told me I had to do (that’s how I roll, always have), I am leaner, and healthier than I ever have been in my life, and am able to do things I never have, as in buy high leg boots. This is extremely rewarding to me, because I’ve never been able to zip them past my damn ankle.
I’ve received and continue receiving a lot of judgement for not eating grains, for saying no thank you when there’s birthday cake and doughnuts in the office, and when I eat lots of bacon. Well, this is why. I’m taking control of my health and body. The women that make snide comments toward me about how “skinny” I am-can kiss my mother fucking ass. I work hard to be this way, to be healthy, and they’re missing the big picture. It isn’t about being skinny, it’s about feeling good, and being physically and mentally strong. THIS is why I’m so passionate about food and the effect is has on our bodies.
yay! Good going! Pay no nevermind to those jealous women!
So happy for you Linds!!! I’m not a big fan of the Paleo diet myself, but the fact that you’ve had so much success with you, who the hell am I to poopoo your choices 🙂
Very nice ankles, Linds!!! To Hades with the ass holes who make snide remarks. This is Lindsey’s world. They better axe somebody!!!
I just came across this blog. I am freaking out that lipedema is what I am dealing with. I am a nurse and I’m researching like crazy. I live in Viginia and can’t find any one who specifically treats it. I need to be diagnosed (or not!) how does that happen? I don’t know where to start. An Endocrinologist? Please send me any info. I’m really scared. Thanks.
Michelle-can you email me at my blog email address? firstname.lastname@example.org and we can start a conversation! Hugs. Linds
I have all the same questions! I would like to get a better grasp on where to start with diagnosis help 🙂
I’m wondering the same questions . How do I get diagnosed? My dr said its a mild case and would tell my other dr and that I needed to get massages and wear compressions but that’s it!!! I feel so lost!
Lauren, I hear you! I’ll be writing more about this in the coming weeks 🙂