Breakthrough

Today stretched to infinity and beyond.

Waking up at 5 am the week Daylight Savings Time hits will do that to you.

I schlepped my tired ass to endo #2 at the butt crack of dawn this morning. This time I also brought an entourage of support with me. Yes, I called in the troops. I asked the baddest mofos I know to be the heavys at my appointment.

"Don't let them dismiss me."

"You can say things I can't."

"You're the bad cops. I'm the good cop."

Aaaaaand I didn't even need to do any of that.

The endo was a brilliant physician. Which I knew, as I'd seen them before, but that first 'diagnose and ditch' endo appointment made me panic a bit.

The highlight reel...

1. I have support for my efforts to qualify for the NIH study. They'll write a letter and help me with switching around meds for additional blood work. After two doctors looking at me like I was crazy to even consider the NIH, this was a welcome surprise.

(Also, I feel like more doctors needs to use the Yes Principle of Parenting. Say yes whenever possible. What does it hurt them if I go to NIH? Sure, I get not wanting to mess with the meds and have that liability, but we aren't even at that bridge yet.

Let the NIH decide if I'm a candidate, just give me the chance, we can dither about managing meds and all that IF I actually qualify. Trust me, I'll keep going to docs until I find one who will work with me on this...I just need you to facilitate this interim introductory step. That's it. I'm not asking ya to marry me, and I'm sure the NIH would be super thrilled to know you're keeping patients away from their studies...for what?)

2. I saw my adrenal glands on the CT scan. OMG. It made me so sad. They are so atrophied. So so so atrophied. I had NO idea this was what the steroids were doing to me. None. The endo showed me and explained the devastation. There are literally black, empty holes that should be filled with adrenal gland. It was really sobering to see that.

Here's a pic I found online. Mine are like the ones on top. (Middle is normal. Bottom is excess cortisol production as in Cushing's.)

3. The tumor is teeny tiny. I might not even be a surgical candidate, and with as atrophied as my glands are, I'm no longer sure it's the right move anyway. (I still want to go to the NIH though and have them tell me what they think.)

4. I probably do have some periodic adrenal insufficiency going on in the background. This was an interesting part of the conversation. I was told I should always have steroids on me...basically act as if I'm insufficient.  Unfortunately, I know this is a controversial stance that 99.99999% of other physicians will never support. However, I did a little googling, and it does appear to be the case that standards are changing and understanding is expanding with regards to adrenal insufficiency.

5. First physician to question if all the tumors and cysts and my health history are connected somehow. This is my question, too. My body is going in a million different directions all at once. I'm growing a lot of different things and it's all happening in a vacuum??? Naw. That would make me a pretty special snowflake. We just don't have any answers for this question...we need the NIH for that.

6. My DHEA is low, no question, but there's no way to really fix it and supplements are not recommended.

7. I'm guessing I'm going to end up with full time Secondary Adrenal Insufficiency at some point. There is little adrenal gland left. My next bout of SAI is likely to be permanent. We didn't discuss this, but between our conversation and my reading, this is my sense of things. Time will tell.

Next steps...wait for the letter, call obsessively about the letter...on all fronts. I've requested letters from all endos. I don't care who gets it to me so long as one shows up.

Also, I need to see an eye doc for my eyeballs.

And I guess call the OB's office because they seem to have dropped off the face of the earth. I had one call about the uterine ablation promising a date and then...crickets.

Last, time to get the next MRI scheduled. Let's see what the tumors have been up to since October.