Happy Friday! A Lipedema Update

My progress so far on my Lipedema diagnosis

Hi Everyone,

I came across this photo on Facebook and wanted to share it with you. It’s a picture of me and my husband at The Nutcracker, about five years ago. I still had kinda cute knees back then.

But, seriously, aren’t we adorable?!

I remember thinking I was so overweight back then. I was a bit embarrassed about the photo. But, wow! I was wrong. I looked just fine. Anyway…

Here’s an update on my medical progress!

When it comes to advocating for yourself, it is an ongoing process. I give you my brief updates on my medical progress because I want to show you how difficult it can be to get your medical needs addressed and treated, and how you have to keep persisting.

My past week is a perfect example of the inefficiency with the medical industry and the helplessness of feeling at the mercy of other’s doing their job. To them, it’s just another day at the office. To you, it’s your life.

I work in this industry, so I knew going in that it was going to be a long process. This is especially true because this condition is not well-known by the medical profession, and so the diagnosis and treatment is obscure. I’ve found myself educating my medical team on my condition. But, I’m making headway, slowly.

Patience is a virtue in this scenario. So is graciousness.

No matter how frustrated or upset I am, I maintain a cheerful disposition with whomever I’m talking to on the phone. Being a nurse case manager, I know that it’s easier to work with a patient when they are patient and cooperative rather than yelling and screaming at me, or being belligerent. It is all a process. It’s not fair to the patient, but it is critical to maintain a cooperative disposition. Otherwise, you become your own worst enemy.

I continue to make my daily-to-weekly phone calls, follow up appropriately with doctors, attend my appointments, and am diligent with my self-care. I think my efforts help physicians want to make an effort to help me too.

I also continue to work towards accomplishing my goals, and that is to 1) live a normal life with my condition, and; 2) get insurance approval for lipedema surgery.

But, working with the medical industry is like having to deal with the social security office or the DMV. It’s clunky and painfully slow.

If you know this going in, my hope is that you don’t get frustrated and give up. Keep going!

Here are the updates:

Lymphatic DME

This is the Michelin Man suit I talk about. It’s from Tactile Medical and it helps improve lymphatic flow and soften fibrosis.

I had a fitting for this equipment about three weeks ago and have been waiting to hear if this has been approved from my insurance so I can get the equipment and start using it.

I again called the rep for the company, it was my third call in the past couple of weeks. She finally called me back, and told me they’d submitted for insurance authorization the day before!

I thought I was going to have to wait another couple of weeks, but I got a call yesterday that the machine is being delivered in 3-5 days! I’m really excited to get it.

Knees!

I called back the ortho surgeon’s office and was able to get a live person on the phone to schedule a consult. The surgeon is booked up until February, but I was able to get in with the PA at the end of January.

I wanted this consult to use for my insurance auth for liposuction. I anticipate I will still use it, because I’m not sure I’ll have all my needed information until Jan-Feb.

FCE

I had a functional capacity eval (FCE) scheduled for Dec. 20th. This was a private pay appointment that was going to cost me $600, but I found an in-network PT to do the eval instead and my insurance will cover the cost. I emailed MedImpact and canceled that appointment. I’m waiting to hear back from the rehab office to make an appointment. I anticipate it will be January before I get a call back.

IR for Pelvic Congestion

Interventional Radiology (IR) is the specialty who can assess and treat possible varicose veins in my pelvic area. My swelling is sitting mostly in my middle area, my hips/pelvis/abdomen. If I have pelvic congestion, I would like this treated before I undergo lipo surgery.

I called the IR office, and they still hadn’t received the imaging requested from my vascular surgeon, and still hadn’t submitted the request to the IR doc for review. The person on the line told me she’d submit without the imaging and get back to me on Monday.

I called my vascular surgeon to follow up with the imaging that hadn’t been received from IR.

That office told me they’d submitted the imaging FOUR TIMES! I don’t know what the disconnect is there. However, yesterday I got a call from the clinic, they finally received the imaging, and are going to schedule me for a MRI of my venous flow in my pelvis.

The conclusion of the week is that I’m still spinning my wheels a little bit, but also getting some things accomplished! Not a bad week overall.

Take care!

Michelle