5 Tips for Getting a Lipedema Diagnosis
Also "What I'm eating?" and an offensive Lipedema Poem with a twist!
Happy Lipedema Awareness Month!
Hey There! How are you all doing, dear readers? Have you been taking care of yourself, your body/mind/spirit?
Over the past couple of weeks, I’ve been having some body issues. I’d been doing so well with my surgery recovery, I was losing the extra weight, exercising and eating well, and feeling more energetic. I was doing well at work and being more social. It’s been such a long time since I’ve felt this good!
But then my ankles started swelling. That was right after I fell on my face while walking my dog and ended up with a facial abrasion, eight stitches in my left eyebrow, and a black eye for two weeks.
Then last week, my husband's dad died. Everyone is grieving, including me. And my body starts feeling denser. I’m gaining some weight.
My mind is distracted. I stop taking my daily supplements. I forget to eat. I’m working on autopilot. My body starts aching all over, and my feet hurt to stand on. Compression and my lymph machine aren’t really helping.
Yesterday I went to a family get-together. It was painful to stand. My legs felt like sausages in my jeans. I left early.
I started thinking about the pattern of my issues and remembered my body acted the same way as last year when my mom died. I realized my symptoms worsened with stress. And not taking my supplements probably also plays in part.
I think about all of the body maintenance I have to do, and sometimes it just seems like a constant juggling of ALL THE LIFE THINGS! If I drop one, it all comes down.
But I keep at it. I’m working on a solid regimen of self-care that keeps me going even during extreme stress. It’s all a work in progress!
Now, how many of you have been properly diagnosed? 100%? No?
If you think you might have Lipedema, getting diagnosed is THE MOST IMPORTANT step. Without a diagnosis, your insurance will not cover some treatments.
If you haven’t yet been diagnosed, these five tips are for you!
If you have been diagnosed, you can still apply these tips to any part of your medical care. The goal of these tips is to give you confidence, strategy, and community to find the right medical providers.
1. Educate Yourself
When I first thought I might have Lipedema, I scoured the internet for any information. Although couldn’t find much at the time, I learned all I could about this condition's signs, symptoms, and comorbidities.
I familiarized myself with how Lipedema presents itself and applied that to my personal experiences.
The more I learned about Lipedema, the more sure I was that I had it. I was hitting all of the signs and symptoms. My problem, I was sure of it, was Lipedema.
I call this self-diagnosis.
I’ve always advocated for self-diagnosis. I even wrote a previous post about this (link below):
Can You Self-Diagnose Your Lipedema?
When others thought I was crazy for booking a flight to another state to get diagnosed, I, on the other hand, knew I was on the right track.
Understanding Lipedema’s signs and symptoms is a start on your path to getting a clinical diagnosis from a licensed physician and having that diagnosis added to your medical chart.
If you think you have Lipedema, knowledge is key. Read as much as you can about Lipedema because you’ll need to take that clinical knowledge to your doctor when you want to get diagnosed.
The more you know, the better equipped you'll be to venture into the diagnostic process and communicate with healthcare professionals.
Here are a couple of links to help you learn more about Lipedema:
2. Document Your Symptoms
If you’ve ever been to a pain clinic, your doctor will tell you to write down when you have pain and all of the factors around that pain.
Keeping a symptom journal can be incredibly beneficial during your diagnostic journey. Write down specific symptoms, their frequency, and any triggers you notice (such as in my example above, stress is a trigger). Include detailed descriptions of how Lipedema affects your daily life, such as mobility challenges or emotional struggles.
A journal will help you communicate your experiences more effectively and serve as a valuable reference when discussing your condition with medical professionals.
BONUS: A journal is also a great document source for your preauthorization for liposuction surgery.
3. Think Outside of the Box
When I realized I had Lipedema, I scoured through everyone in my local area who might be able to properly diagnose me, but I couldn’t find one doctor who even knew about Lipedema.
I widened the parameter, looking for anyone on the west coast who could diagnose me. That’s how I found Dr. Herbst. But I had to fly to another state to see her. It was a lot of time and money (that my insurance wouldn’t pay for), but I’m so glad I did it.
In the U.S., there are very few physicians who clinically assess and diagnose Lipedema. Most physicians don’t even know Lipedema exists, much less know how to diagnose this condition.
With that being said, it’s safe to say that your primary care provider will likely not be able to diagnose Lipedema. So, you’ll need to find someone who does know.
You’ll need to do some footwork; start by cold-calling specialists in your area who may be qualified to diagnose Lipedema: vascular surgeons, dermatologists, or lymphatic specialists, to name a few.
If you can’t find anyone in your surrounding area, then throw out a wider net. Keep looking until you find someone who can help you.
Search here for a Lipedema surgeon
4. Advocate for Yourself
At this point, you’ve done your research on Lipedema, and you’ve documented your signs and symptoms. You’ve learned as much as you can about this disease and probably know more about it than your PCP. Keep this in mind.
Be calm, confident, and assertive when talking with healthcare providers. Don't be afraid to ask questions, seek second opinions, or request referrals to specialists. Your voice matters, and by speaking up, you can help ensure that your unique needs are heard and met.
Trust your instincts and stay persistent in your pursuit of a Lipedema diagnosis.
Remember, you are your own best advocate.
Here’s a downloadable brochure for anyone who wants to know more about Lipedema. This brochure can also be given to your doctor or any other medical professional.
5. Connect and Support
Living with Lipedema can sometimes feel isolating, but remember that you are not alone. Seek solace and support from others who are on a similar journey.
Join online support groups, engage with Lipedema communities, and connect with fellow women. Sharing experiences, advice, and encouragement can make a tremendous difference in navigating the challenges of Lipedema.
Lipedema diagnosis is the first step towards regaining control over your life.
You can find support all across social media: Facebook, Instagram, Tik Tok, and others.
Find your safety zone of like-minded people and connect!
What I’m eating?
I love the flavor of barbeque, and was looking for a good sauce that didn’t have a lot of sugar. I found this in my local store and grabbed it.
Since I’m working on eating a low-carb diet, I seek out these kinds of finds. This unsweetened BBQ sauce is low-carb, keto, paleo, and Whole30 friendly. I used mine on chicken, and it’s really good! Primal Kitchen has a lot of other condiments too. Go here (and support me for my work!)
An AI Poem?? What?!
I’m exploring Chat GPT, and asked it to give me a poem about Lipedema. It’s kind of offensive yet a little bit hilarious. No love or hate on me; I didn’t write it! Here you go! (it doesn’t break up into readable paragraphs unless I format it in a wonky way. Sorry!)
"Lipedema Warriors, Bouncing with Cheer!"
In the land of giggles and playful jest, Where laughter reigns supreme, let me do my best, To spin a tale of lipedema with a humorous touch, Where smiles are plenty, and chuckles mean so much.
In the kingdom of lumps and tender thighs, Where lipedema warriors don't bat an eye, They waddle and jiggle, oh what a sight, But their spirit's unyielding, shining so bright.
With each step they take, a seismic quake; The ground may tremble as if an earthquake; But fear not my friends, it's just lipedema's might; Their thunderous steps, a comedic delight.
Their fashion struggles, oh the woes they bear; Pants too tight, the struggle is real, I swear; But fear not, dear warriors, for fashion's a game; With stretchy fabrics, let's give it a fun name.
Lipedema chic, a style all their own; Leggings and tunics, their fashion's well-known; They rock the compression garments with flair; Colorful patterns, they simply don't care.
And when they gather, a lipedema brigade; Their humor and wit, an escapade; They swap tales of swelling, with laughter and glee; Finding joy in the quirks, for all to see;
In treatment centers, a funny affair; As therapists work, with utmost care; Massaging limbs with comedic flair; Tickling toes, spreading laughter in the air.
And as they triumph over each swelling spree; The lipedema warriors dance with glee; Their wobbly waltz, a sight to behold; Giggles and twirls, stories of bravery unfold.
So let's celebrate these warriors so brave; With laughter and joy, let's misbehave; Lipedema champions, shining so bright; Finding humor in the midst of their fight.
For in their laughter, strength does reside; Through lumps and bumps, they conquer with pride; So here's to lipedema warriors, stand tall; With humor as armor, you conquer it all!
Have a Happy month of June!
Check out my socials and my new website!
Yes, I now have a website, www.getyourlipedemaapproved.com. I have four different programs, so take a look!
I also have an appointment calendar if you’d like to schedule a time to talk with me or sign up to work with me on getting preauthorization approval for liposuction. Schedule time here!
Find Lipedema and Me on TikTok, Facebook, and Medium!
Take care,
Michelle
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