The journey to this point, to standing on the precipice of recovery, was a long one.

As I mentioned, I struggled with my weight for years.

That’s really rather simplistic.

I was a skinny kid most of my life, the one who’s cheeks were pinched and who Grandmas (mine or others) were constantly trying to shovel food into.

“Eat! You’re too thin!”

“You eat like a bird!”

The first time I ever remember worrying about anything other than people trying to fatten me up was shortly after puberty. I spent the summer (as usual) with my Aunt and Uncle, eating the same things, doing the same things, riding bikes, swimming in the local ponds, occasionally riding horses, doing kid stuff. That summer I gained 40 lbs. In one summer. Doing nothing different. Probably 8 of that was breasts. I kid you not. Even with that, it was an unusual increase.

Still, other than a few lectures to eat less, and start exercising, nobody thought much of it.

I had various periods where my weight would trickle up, but nothing like that. And nothing that seemed to trigger any awareness on the part of the adults in my life. I got labeled lazy, and in all fairness, I’m sure that’s what it looked like from the outside. My legs ached when I stood still. Walking was ok, but even then, if I overdid they ached and burned and felt like lead. Adults would reassure me it was growing pains or normal or just getting older.

I had my first child two months before my 19th birthday, and once again, I put on considerable weight. I ate pretty much the same thing throughout my pregnancy, but suddenly in my third trimester, I started putting on 10 lbs per week. Every week for 4 weeks. It stopped as quickly as it started, again, with no change on my part. The pattern repeated during my second pregnancy 7 years later.

Over the years I tried dieting, on my own, Weight Watchers, Jenny Craig, etc. Inevitably I’d gain weight, not lose it. It was heartbreaking and frustrating and made me feel slightly crazy. After my third son was born, I tried Weight Watchers again, using their new, easy, 1, 2, 3 points system. I ate the minimum calories, almost never ate my bonus points, and I worked out like a madwoman. I gained weight.

I had several doctors over the years suggest I wasn’t eating what I thought I was, or that I was lying, or that I must be sleep-eating. I finally gave up, and decided I’d eat healthy, move as much as felt right, and leave the rest to fate, because what I had been doing wasn’t working. I started eating a whole foods, higher fat diet, but focusing on healthy fats, eating low glycemic, and stopped obsessing over the scale.

Almost miraculously, my clothes started hanging on, or falling off. Suddenly I didn’t have to fight or struggle, I was losing weight without losing sleep over making it happen. For the first time in decades, I felt good, had some energy.

It was a relief to be diagnosed with Dercum’s, and even more so with lipolymphedema. Finally I knew what was wrong, why I often gained instead of lost, and why treating my body well instead of obsessing over a number had yielded the results that previously eluded me.

Accessing treatment for this condition was another matter. Partly due to the vagaries of the American insurance system, partly because of bias, partly a lack of awareness.

I’ve spent 2 periods of 2 years nearly bedridden. Meaning having to retreat endlessly to my bed to rest my broken and weary body. As someone who had cancer at 35, who has lost many relatives to cancer far too young, it’s frustrating and heartbreaking. As a mother of young children, and a wife, it’s maddening. The price I paid is one thing, but the cost to my family was needlessly brutal.

So I’ve fought a long, drawn out battle to get the treatment I need. Now we’re finally here. There are more pieces of the puzzle that need to be found and solved but this is a good start.

I stand at the crossroads, having taken my first tentative steps, feeling my first successes.

This halting stop/go, yes/no world can make a girl a little crazy, but I’m thankful for the opportunity to finally see what I can do, and to hopefully get some of my life back. Some quality of life for me, and my family.

Whatever comes, this is more than I dared hope for….