Happy Friday! And a Lipedema Update
My progress towards managing my Lipedema
Hi Everyone,
I’ve been working on a couple of articles about diagnosing your Lipedema, and I’m almost done with them. I’ve had a bit of a physical setback, so I’m taking it easy and that means I’m not writing a whole lot. Between work and the holidays, I’m at my physical limit. I love Christmas, so I’m focusing on this for the time being, and spending time with my loved ones as much as I can.
I’m giving an update on my treatment for my Lipedema, because I want to show you the many different disciplines involved with Lipedema management and how important it is to have a team of medical people helping you. And also, how important it is to keep on them to continue moving yourself forward with your treatment! Doing this can be exhausting, especially if you aren’t feeling well (which I haven’t been this week).
But, like the cliché goes: This isn’t a sprint, it’s a marathon.
Slow and steady and keep going. You can do it!
As a Nurse Case Manager, what I’m doing here (below) is what I do at work all the time. It is a matter of making a ton of phone calls, follow up, then follow up some more. Keep on it until you get answers. In my line of work, I always say that if you haven’t found an answer yet, you haven’t made enough phone calls.
Below is my progress (or lack of), and what I’m doing to help manage this condition, and also what I’m doing towards getting data and information for liposuction surgery approval through insurance.
Here we go:
Lymph Drainage Device
I am still waiting for my durable medical equipment (DME) for my lymph drainage. I call it the Michelin Man suit, but it’s a fantastic compression device that works on the lower body. Since most of my issues are because of my lower leg swelling, I can’t wait to get it, I think it will be a game changer for me. I hope I can get it before the end of the year. I called the rep last week—no call back. Not surprised. I’m going to call her again today.
Functional Capacity Evaluation (FCE)
I finally got a call back from the company that is finding and scheduling my FCE. This mobility testing is pivotal to getting preauthorized for liposuction surgery. My appointment is scheduled for December 20th. I was given the bill: $600! Honestly, I don’t have the money. I’ve spend so much $$$ out of pocket for this condition, and with Christmas here, I’m tapped.
However, my previous sleuthing has paid off. A physical therapist called me back, she also does FCE’s and is covered by my insurance. I contacted my PCP and asked if he could send an order to her (which he did, love my PCP!) and I’m waiting for them to call me to schedule.
I will have to wait a little longer to get my FCE, but at least I won’t have to pay $600 for it!
Knees!
The orthopedic surgeon’s office called me back from the referral I had sent to evaluate my need for knee surgery. I’ve been playing phone tag with them all week. I’m going to try and call again today to get scheduled.
I believe that if I had the weight taken off, my knees would be better. I don’t want knee surgery, but I do want to talk to the surgeon about the impact of the weight and if it is better to wait for liposuction and see how my knees do after that.
My ulterior motive is for the surgeon to document that my knee pain could be remedied with weight loss where I wouldn’t need surgery for a while. That documentation is more fuel for my preauthorization request for lipo surgery.
Lymph Drainage Techniques
My physical therapist is showing me various ways to lessen my lymphedema with wrapping and compression techniques. A lot of it is time-intensive. I already do several things to manage my swelling; compression hose, LDM, elevation, vibration (I’ll talk about this later)…on a day off when I’m feeling well and don’t have a schedule to meet, I’m going buy some materials and work on the wrapping technique my therapist taught me. It going to take at least 20 minutes of wrapping when I first start, but I hope with time, I’ll get faster.
On a side note, my physical therapist has been the most helpful for me out of everyone. She is a gem and her toolbox of knowledge is impressive. I highly recommend if you don’t have a PT who specializes in lymphatic drainage, find one!
Interventional Radiologist (IR) Referral
Dr. Herbst diagnosed me with pelvic congestion, and I was able to get my vascular surgeon (the doc who treated my varicose veins) to refer me to IR for a consult, and treatment, if any. Which they did after my insistence.
The process is that after the referral to IR, the IR specialist team reviews my case and will decide if they want to consult with me.
This one is dead in the water. I haven’t been able to get any news on where that referral is. I’m patiently waiting for a call back. I haven’t called them recently.
I’ll call again today, if I have time. I have to work today, and so all of these phone calls I need to make during my lunchtime.
I hope my journey is helpful for someone, to show that this is a real disease that needs management, treatment, and support. If you have any questions for me, please don’t hesitate to ask! I want to be the support for those who need it.
Have a wonderful weekend!
Michelle