Tired

This was my week.

Monday:
Ob/Gyn appointment to set up uterine ablation because of the liver adenomas.
Corresponded with lots of hyperaldosteronism patients.
Researched an NIH study a lot of hyperaldosteronism patients apply to and sent an email to lead researcher.

Tuesday:
Heard back from NIH. They are actually interested in my case, but I still have things to do to qualify.
Got a phone call from the Ob/Gyn nurse to start the process of getting a procedure date.
Called diagnosing endo to start gathering what I need for NIH.
Called second opinion endo and got appointment moved up to next week.
Called the hospital to order records.
Went to hospital to pick them up.

Wednesday:
Met with primary care physician to update them and discuss NIH study.
Went for mammogram--it's time and I'll need to prove I don't have breast cancer for NIH.
Ordered more hospital records trying to find imaging for NIH.

Thursday:
Ran to hospital to pick up more records.
Spoke with pastor and explained everything. Somehow triggered a meal train that makes me both grateful and ashamed at the same time.
Took kiddo to the dentist for a filling.
Called endo again as they still had not returned my call.

Friday:
Endo's fellow called and we discussed what I needed for NIH to decide if they should proceed with me or not.

In between I homeschooled the kiddo, felt guilty about not working much, and didn't cook any meals--we lived on take out this week. I just couldn't handle cooking.

My eyelids continue to be swollen. My right eye seems to be enlarged now, but it's subtle and maybe I'm crazy. I almost went to urgent care, but am trying to hang tough until the second opinion appointment next week. I don't feel good, but I don't feel as heinous as I did last weekend. I keep hoping this will resolve.

Also, no one wants me to go to NIH. The lack of support is stunning and I don't understand it. I keep getting asked 'why do you want to go to NIH?'

Ummm...so I don't die because of y'all?

Medicine has been so god awful at diagnosing ANYTHING, and I have a strange pattern of tumors and cysts that I think medical care that looks at ALL THE THINGS just sounds SMART at this point.

I am not looking for 'you're fine' blow offs. I want empirical data that proves I'm fine. I don't care what medicine thinks, I want data. Prove that medicine works and that I'm full of shit. PROVE IT.

NIH will scan the shit out of me. Blood work me like a starving vampire. Genetic testing. AND I can donate my tumor (if they decide to take it out) to help others. I donated my liver tumor to research. I am HAPPY to give science more if they want it.

PLUS...it's free. It is a major financial burden to max out our insurance two years in a row. If I can save us money, I need to do it. My biggest fear is destroying my family financially with all the sick.

AND it's not an experimental study. No meds. No crazy anything. They are collecting data on these tumors so the care is standard but very thorough. No worries that I'll get cancer or lose a limb from some untested drug or anything.