Rare Disease

My wife and I had back to back appointments with our PCP today.
She was just getting her yearly. I, on the other hand, had 4 important points of business and my yearly. I went first. The first thing I did was tell her that the SEL grew back. She's not familiar with SEL and there's really no reason she should be cuz it's extremely rare. I told her about how it's much more rare for it to grow back. I said I always wanted to be special but not like this. Then I showed her the big bump on top of my head and she said I definitely need to see derm so they can drain it. I asked her to tell her boss (my personal friend but I don't have a way to tell him about my health. He was 1st in his class with rare diseases) when she sees him tomorrow. Then I told her about how my scalp Seb derm is currently extremely painful and itchy and peeling. I showed her the bad spot on my right temple. She said it looks angry. Then I told her about my gut aches and I told her I'm drinking protein coffee which is making me have painful GI distress. She asked if the benefits outweigh the negative. I said yes. In the last month of drinking it I've lost 5lbs. It makes me so happy and keeps me full. And it's sugar free so it's not impacting my diabetes. She suggested I take lactaid and I told her I have been. Then she said it's time for a mammogram. She sent the order to the imaging office I use all the time. I got to call them tomorrow. I also gotta schedule with derm.
Before we went to the appointment, my wife asked if I was bringing my rollater and I said no I shouldn't need it cuz my hips feel fine. Guess who has 2 👍👍 thumbs and forgot about my lumbar. This guy right here.
When we got to the patient room I plopped my giganticus butticus up on the table and my back said "the hell-o you think you're doing? " So I laid on my side until the doctor came in. The pain was up to 7. When we got out of the appointment the pain was at 8. It was shooting down both of my legs. Which means the spinal epidural lipomatosis was flared up.
I need to call my neurosurgeon who did my surgery to see if he wants me in to talk about another surgery. I'll do that tomorrow. Not only did my SEL grow back, I've also got 2 more spots of stenosis. My body is a squeaky wheel.
After the appointment I was supposed to get labs drawn. I took inventory of how I was feeling. My mouth was dry and painful and I was extremely thirsty. I know those symptoms all too well. I was dehydrated. Which means if they *could* find a vein for blood, it'd come out like sludge through a glory hole. So I just sat in the waiting room when my wife had her labs drawn.
While I was waiting, my pain specialist nurse called me to schedule my lumbar nerve ablation. The soonest I could get in is October 2nd. So I said yeah.
Sorry so long.

I had my cortisone injections in my hips 2 weeks ago and my hips feel good. They've been popping a lot when I stretch my legs. But my lumbar.... That britch is the kind of fluck who microwaves fish at work. There is no excuse.
I have my follow up appointment on Tuesday. I'm going to schedule my lumbar nerve ablation. I'm gonna ask my doctor about the spinal epidural lipomatosis (SEL). I don't think she knows I had a previous surgery to remove the giant mass of unencapsulated fat. It grew back. So what now? The only treatment is surgical removal. It explains why the horribly intense lumbar pain came back so badly. I just want to curl up and cry.
See... SEL is quite rare. And cases of SEL growing back are so rare they don't study it. My previous PCP was first in his class with diagnosing rare diseases. He would have loved to play with this case. But as it stands he can't even talk to me.
Pauley and I have back to back appointments with our new PCP on Wednesday .I have 2 mildly painful bumps on my head that I didn't have 8 months ago. They grew noticeably. I'm pretty sure they're just benign Pilar cysts. So I'm gonna have it looked at.