Hellooo! The Lipedema Journey Continues

This is the year to take charge and be healthy

Hello Everyone!

I know some women don’t want to get surgery. This is such a personal choice one way or the other, and I’d never tell everyone they need surgery. Many women manage their lipedema well without surgery.

For me, I’m pursuing surgery because my Lipedema has progressed to the point where it impacts my mobility, causes me a lot of pain, and has significantly lessened my quality of life.

I would love to hear from any of you about your path. Please feel free to comment! We are all in this and I learn a lot from you. I’ve only known about this disease for less than a year. For those who’ve known about their Lipedema for a long time, I’d like to hear your story.

Self-advocacy is exhausting! But it’s essential

I’m a Registered Nurse Case Manager (I manage patient cases and work with medical insurance), and I know how to maneuver around the medical system—AND the insurance bureaucracy—it is tough! If I have a hard time, I can only imagine how difficult it is for someone to come into this system who isn’t familiar with the complexity of it, and get the treatment they need.

Add on top of it the fact that our disease isn’t recognized by many insurances, and is barely known by many medical professionals, and that makes it almost impossible to self-advocate.

Then add on top of that that you’re considered an obese woman. There are a lot of stereotypes that go with that. It’s maddening.

I admit I pull the RN card a lot. I have to, otherwise I don’t believe I’d be taken seriously. I also speak medical language (honestly, it’s a different language) so I can go toe-to-toe with a physician when I get some pushback.

I’ve been doing a lot of self-advocacy to get the treatment I need. I write this part of the newsletter to show you the extent I have to go through to get the treatment I need. If you keep being the squeaky wheel, you WILL see progress.

Anyway, I’m here to write about my personal journey, and also to give you knowledge and information about Lipedema and the treatment—surgical and non-surgical—and also help you with the process.

So, let’s get to it! Here’s my last two weeks…

I have had so much progress in the past two weeks with my healthcare goals, and getting closer to submitting a preauthorization request for liposuction surgery for my lipedema.

Pelvic Congestion

Many women with Lipedema also have other medical issues, such as varicose veins. I read that having varicose veins ablated prior to lipedema surgery is ideal, because of decreased bleeding. I had the vein ablation surgery last fall. I was also told that I also had some symptoms of pelvic congestion, and was told by a physician to get that looked into.

Getting this looked at was not easy. The process turned into a red tape issue, of a CD image being lost in the mail. But, that resolved and I quickly got scheduled for a MRI of the veins in my pelvis (It’s really called a MRV). I had that done at the beginning of this week, and the doc has already called me with results.

It turns out I don’t have varicosities in my pelvis! Yay!

That means I won’t have to undergo another crazy procedure.

My arthritic knees

I used to be a long-distance runner, and between that and bad genetics (I’m only guessing, my grandpa and my dad had arthritic knees), I’ve been managing the problem with knee injections. Those started failing last year, and I’ve been referred to an orthopedic surgeon.

If you’ve read my other letters, I talked about how last year, a surgeon denied me having surgery because I needed to lose weight. Well, this time, I weigh even more than I did last time, plus I now have lipedema and lymphedema in my legs.

I have an appointment towards the end of January for that second orthopedic consult.

That will be interesting.

I’ll keep you informed about how that goes. I really don’t know which direction it will head in, but I’m guessing they’ll say no again.

Functional Capacity Evaluation-FCE

I finally got an appointment at the end of this month for this evaluation! I’m so happy for this! If you remember, I’d had another FCE scheduled that was a private pay for $600.00! But I found a physical therapist that is covered for my insurance with only a copay. So I quickly canceled the private FCE and asked my PCP to send an order to the other therapist.

This is a three-hour assessment to test my ability to function in normal, everyday life. I don’t have a clue what they will do during this three hours. But, I’ll let you know after I go through it.

I’ve been waiting on for months for this. Literally for five months. It’s the most important appointment and will be the last thing I need to submit for a preauthorization to insurance for surgical intervention.

Once I’m done with this and get the assessment, I can actually send my preauth request.

Stay safe and healthy!

Michelle