When last I wrote, long, long, *long* ago, I was to be measured for progress. The good news is, the leg that had been most recently treated with the Flexitouch pump was much smaller. Yay! The leg that had been a day between treatments was larger. Boo.
It has been noted several times in this journey that while the pump and massage work wonders, without compression, the losses aren’t maintained. Those of you familiar with lipedema or lymphedema will say “well, duh!”. Worse, since I have a systemic disorder, without the compression, we just move the fluid around from one limb to another.
The problem is getting the compression is not so easy, which is why I have been silent.
In the last year and a half (and then some) I’ve been to multiple physical therapists, multiple DME providers, and waged multiple battles with insurance companies. I’ve stood firm with doctors, and cried hot, burning tears of frustration. It just shouldn’t be this hard. I have a diagnosis. There is a treatment. I respond unusually well to treatment. I just can’t get the treatment I need.
What the physical therapists want to do is do the MLD for several weeks, and order compression for one limb at a time. At first I was baffled by this. It’s like having cancer and the surgeon wants to remove the tumor piece by piece over several weeks.
Finally after going to several therapists who billed for multiple visits while making multiple excuses for not ordering the compression (or flat out refused) I decided we needed to try something new. I went to my doctor at U of M, and after much back and forth, left with a prescription for full body adjustable compression.
Getting it filled was another matter entirely.
The first provider (in network) we went to spent hours measuring me, hours trying to fit me into ill-measured garments, and then tried to get us to sign a document stating that we would allow them to bill us at the out of network rate.
Um, no. If I had the money for an out of network provider, I would have gone to an out of network provider. My intentionally choosing an in network provider might have been a clue that perhaps I was electing to use my in-network benefits.
I decided that even if we were able to work things out with them, I wasn’t interested in rewarding this kind of behavior. So we looked for another provider. This required multiple calls to our insurer Cigna. During one call, a supervisor spent almost two hours on the phone with me trying to find a provider that would provide compression. No dice. They tried calling the first in-network provider. They say the garments will cost us $5500. Cigna says sure, we reimburse $2800. Provider says they sign for out of network benefits or we won’t order the garments. Supervisor thanks them and hangs up.
But I come away with a clue as to why this whole process is so damn hard.
Cigna finally gets me an appointment with another provider. They call me not an hour later and apologize, and say they will only be providing off the shelf compression, they won’t be doing custom compression any longer, they can’t do it and stay in business. No wonder. If your mechanic could only bill for half the cost of the parts and nothing for labor, he wouldn’t stay in business long either.
We asked for another list of providers from Cigna. While I reside in Michigan, their next set of referrals included a provider that, wait for it, doesn’t do custom compression, in CHICAGO, and a company in Minneapolis that makes compression vests for pulmonary insufficiency. Completely different disease. Completely different product. Many, many miles away.
At that point my brain exploded and I spent several months licking my wounds and trying to figure out what hand I even have left to play.
Meanwhile my husband changed jobs and we have a new insurance company.
We had some hope that would change things, this plan has a much higher premium and the deductible is 4 times higher.
But so far it’s looking just as bleak.
I’ll go into more detail of what has taken place the last 6 weeks in another post. For now this is long and depressing enough.
Until next time, peace, love and spoons to all my spoonies.
The Total Cost of Lipolymphedema 
This just isn’t right! Such a simple way for you to be able to live life again and they are not going to cover it? Are they happy to pay all the other bills for secondary problems (that you wouldn’t have if they would give you what you need)? Sooo sorry you have to suffer knowing that there is something out there that can help you but it is just out of reach!
Well the insurance company would say they are going to cover it, but they’ve made it impossible for the providers to provide me the care I need.
If they had to pay out twice as much as they take in, they wouldn’t stay in business very long either.
They sure understand that part of the equation…
I appreciate the kind words, Jami. I’m so hoping to get back to life here soon….
Insurance is there to provide for the unexpected. The unexpected is truly a rare condition, like say a rare disease! Insurers don’t deal with rare disease because their rare, which is an oxymoron to me. It doesn’t make sense at all. I can only hope that what goes around comes around. Maybe one day we’ll get some sense in this country.
When you compare the cost to cancer, stroke, heart attack or an accident, my treatment is a mere pittance.
And my treatment greatly reduces my risks for all of the above.
Not to mention the longer I go without treatment the more rehabilitation is going to cost.
Heck, this could have been treated very cheaply had I been diagnosed in my teens as women in countries with socialized medicine are.