I got a bone scan! 4.4.19

I’ve never had my bones checked all these years! And because I had such high doses of prednisone - a hardcore steroid) for nearly 10 years, my bones are especially at risk. Now, it’s even more risky since my diet is so limited….so fingers crossed for good results.

I’ve never had my bones checked all these years! And because I had such high doses of prednisone - a hardcore steroid) for nearly 10 years, my bones are especially at risk. Now, it’s even more risky since my diet is so limited….so fingers crossed for good results.

It feels especially cruel when someone that’s a total health-nut gets hit hard. My cousin - my mom has 27 first cousins so it’s one of hers - who is only 66 years old had a heart attack last weekend. WHILE RIDING HIS BIKE. I used to babysit his kids who, of course, are grown now with kids of their own.

I look at my dad and me. We work SO hard at our health. And still now, the phone calls, the doctor hunts, trying to get imaging ordered. I just spent at least an hour trying to get a basic thyroid prescription filled at Bartell’s - still don’t know if it’s filled because I couldn’t get a live human on the phone. I’m also trying to get some other vitamin supplements from California and I can’t get a live human on the phone. It may be days before I find out what’s going on.

This week was an “easy” week with only a dentist and a bone scan! I feel like I have to take advantage of every extra minute I have. I finally emailed the surgeon that I really felt safe with about doing exploratory surgery. I got an email back - thank goodness for e-care - saying she is leaving the practice.

It’s very frustrating to me when people don’t believe me when I started sounding alarm bells about our medical system. I don’t want to be right. I wish all the time that I’ll be proven wrong and people can make fun of me.

Too often, I’m not wrong.

I feel like this blog post is so complain-y. I know I’m still working through a lot of stuff and need somewhere to go with all this. But I found out I have a fan in Spain this week and he mentioned how much he loved my Life Stories. I was like YEAH! I want to write more stories!

But when? How? I come on here with all my medical concerns because this is all I can think about. This is all I do. My body is living on maybe I don’t know, no more than 800 calories some days. If I can gag down some vegan ice cream, that number goes up. Some days, though, the thought of any of that sounds disgusting. I have to rotate all those kinds of foods. Today, I tell myself: eat anything, anything you want.

None of it sounds good. Pudding, blech. Vegan ice cream, GAG. Ok, what about…and the list goes on. It’s all shit food anyway but it provides much needed calories. The endo doctor kept encouraging me to juice. But that’s not any calories! That’s more about nutrients. I’m seeing now that it may be easier to get nutrients through IV or juicing than it will be to get calories.

The only time my stomach doesn’t hurt? When there is absolutely nothing in it.

That’s not good.

I’m so tired. I did have a nice afternoon though. My bone scan was quick and I happened to have a volunteer driver who was a friend from camp when we were really young! I think we met around 10 years old!

My appointment happened to be at UW (University of Washington where we both went to college) and it was very quick! (Love those appointments.) So we were able to walk onto campus and see the cherry blossoms! THAT made me happy. But now I’m so tired. I definitely used up a LOT of juice doing that walk. I rarely walk outside for that long when it’s this warm without an IV bag. Also this late in the week, I’m often super tried. I can tell I’m dehydrated now. My hands get super dry and then my mouth and lips.

My blood pressure is probably around 105 over 75 right now. That’s how accurately I can estimate it.

And yet the doctors blow off my concerns.

I know this organism - my body - better than anyone on this planet. Most medically fragile do. But look how they treated Serina Williams! A famous, super talented world-class athlete. Just blew her off. She knew exactly what was happening to her. And. They. Still. Would. Not. Listen.

They don’t listen. Gd help us if we are women, or women of color, or marginalized in some way.

If I survive this chapter, it’s going to be because of MY education. MY tenacity. MY nutrition knowledge.

That’s the only way to stay alive these days. Tenacious and well-informed.

I do hope I can find a way to start downloading all this information in my brain.

I’ve decided: I’m giving it away for free. I trust that if I need something, people will come through.

I’m so tired of greed. The only way to move the needle is to model something else.

I take care of my community. My community takes care of me.

THAT is how this world is supposed to work. Not hoarding. It sickens me. The greed in this world.

Fuck it.

Nobody should have to pay for information that can save their life.

I don’t care if this is considered stupid from the Patriarchal Lens.

Under the Matriarchy, this is normal. This is right. This is JUST.

If we have something that can help others, we SHARE IT.

I know I sound so frustrated and bitter in some of these posts. But I have to get it out SOMEWHERE.

Oh, I just got a text that two of my volunteers are juicing for me!! HOW FREAKING LOVELY IS THAT.

That’s what I’m talking about! YESSS if we have something to share, we share. We don’t hoard. Doesn’t this sound like a rule for a preschool?

That’s because it is.

Signing off. Listen to my latest podcast on how TOUCH can be therapeutic and is important for both physical and mental health. I’m a lot funnier - and more chill - when I talk than when I write. When I write I’m INTENSE.

But that’s not my whole personality!!

I think you’ll dig it!! Gotta go now and visit with a friend and get some hugs! :)

Much love,


p.s. the podcast is also on Google Play but I don’t have link handy. Sorry so tired. I’m working on streamlining all of this. Everything takes FOREVER because I’m so tired.