Feeling hopeless

5 years ago I was a powerlifter & runner. I was active, full of life. I was definitely a curvy girl but felt great in my skin & my body image & relationship to food had finally healed after 2 decades of dieting. Quite literally overnight, my world came crashing down & I suffered from my first (of many) autoimmune flare up that left me couch bound for weeks. I rapidly gained 50lbs in 6 months. And continued to gain another 20 in the next year.

I’ve been to 8 different doctors. Became a human pin cushion with labs after labs. Only to be told over & over that I have an autoimmune condition but the doctors have no idea which one.

During that process, my inflammation was so damn high & I believe that is what dramatically progressed my lipedema (which I now realize I’ve had since puberty). I was first diagnosed thru a consultation with Dr. Herbst 2 years ago. Realizing I couldn’t afford to see her any longer (plus she’s in another state), I got an appointment scheduled with a doctor who took my insurance. But had to wait a year & a half just to see him.

In the meantime, I’ve tried keto & carnivore with zero results other than dramatic hair loss & awful menstrual cycles. I cannot afford surgery. I’ve tried all the conservative treatments & honestly I’m managing pain symptoms fairly well thru healthy whole food diet & 10k-15k steps daily which is a win.

But I’m so depressed. I feel like a former version of myself. My lipedema is in my arms, legs & stomach. My thoughts are constantly consumed by my body. Not just how I look. But also feeling like my body is betraying me between the lipedema & mystery autoimmune condition. It’s getting harder to go out into public places because I’m filled with anxiety over things like will I even fit into the chairs? Will I be physically capable of what this activity entails?

After the year & a half wait, I finally had an appointment with Dr. Rockson out of Stanford. I was so hopeful for this appointment as I know he is considered a specialist in this area. But he basically told me there’s nothing I can do. He won’t do surgery for me. He said that conservative treatments really don’t do much. And suggested that I just continue to try to lose weight. What?! I waited a year and a half for that?

At this point, I feel like I just need to learn to accept my fate but I feel like a prisoner in this body.

I don’t know what I’m hoping to get out of sharing this. Maybe just needed a space to vent. But if you have any words of hope or encouragement, I could definitely use them.