I felt crappy yesterday afternoon and evening. This happens quite a bit in this new life of mine. I have so many biochemistry issues that it’s hard to tell what’s causing what so I can’t always get a handle on it. (I took some Tylenol - I’m too nervous about becoming an addict to take anything stronger. I’m sure people wonder about how I manage pain! I will get to it…I’ll get to it.)
Last night, however, I grabbed the Pringles package and started licking the salt off potato chips. I started thinking about “Our Planet” on Netflix where he shows the animals going to a “salt lick” and realized that I was craving something my body obviously needed.
It was a clear indicator last night that my sodium levels are off when I started adding more of the Maldon salt than usual to my pile of avocado. I was even eating it off my fingers.
I remember when I did this for the first time. It was a few weeks after my surgery, I couldn’t get enough salt. This should have alerted to me to the fact that my adrenals were impacted by the surgery, or at the very least, that my electrolytes were off.. Fortunately, my progressive MD down in San Diego figured out that my salt was way off and that was impacting my need for the IV fluids - of course, that took another couple of years. My dad also likes a lot of salt as does one of my nephews. Why? Why do we need the extra? Is it related to Lynch or totally unrelated?
My working theory about yesterday’s feeling of crappines: the IV bag might have threw my sodium off yesterday. I rarely get headaches - so when I do get them, it means something is way off. I’m used to a lot of pain but I’m a huge baby when I get a headache! It’s weird how we get so used to something like stomach pain but if it’s an unusual pain, then we feel more sensitive to it. I emailed my naturopath doctors with the theory - I may need to make sure I’m sipping salty broth while I get the bag next time or up the sodium inside of it. I have to be such a vigilant scientist in order to stay alive!
I’m very tired today. I did too much over the weekend. I will need to do a couple of days in bed to recharge. Fortunately, I don’t have any doctor appointments tomorrow! WAHOOOO!!! As soon as I realize I have a “day off” from doctors, I feel pressure to research doctors and try to find someone that will help me.
It’s pretty frustrating that some able-bodied people in my world think I’m just lounging around with tons of extra time. I’m in bed right now typing this out - in the hopes that I can continue to share my case with a community of people that will help me reach the right experts. I also just posted my podcast - in the hopes that I can stay sane throughout this experience by creating content that feeds my soul and tethers me to the outer world.
The podcast is special today (you can find it here on iTunes and also on Google Play).
I shared the first medical trauma I experienced at age 17 years old.
You’ll have to listen to hear it! I never realized that I haven’t told the story before. I don’t think I’ve even told friends? No idea. I’m pretty sure the only person that remembers it is my mom.
It’s strange how medical trauma can appear so “normal” that we don’t even realize that it is, indeed, trauma. In fact, so much of what we have normalized in our culture doesn’t often appear to us as trauma. That’s why so many people that have been improperly touched, assaulted and attacked in some way don’t say anything right away!
As Roxane Gay said about her rape: she didn’t even have the vocabulary to make sense of what happened to her at the time.
It can often take years of therapy - or just years of growing up - or another incident to allow something to resurface and give us the chance to address it. I guess I should bring this one up with my therapist in my appointment today….
It’s so much work staying alive and keeping my mental health on track.
I feel embarrassed to share this photo! I eat so weird now, it feels like something I should hide - which is an indicator that I SHOULD share it, if for other reason, because it helps reduce the shame around it. Some people look at me like I’m so gross when I eat salt off my fingers - it’s an awful feeling when that happens. I think that would be considered a “micro-agression.”
I lick the frosting off of donuts (you should have seen the look on a woman’s face when I did THAT at the grocery store - I was like bitch don’t even, you have NO idea what my story is). I douse avocados in dressings because they make me gag when eaten alone - they used to be one of my favorite foods. I drink gallons of beverages many days.
I feel like a freak. But staying alive is more important than anything else so the people who truly love me will understand that this is what I’ve got to DO.
It’s concerning how little appetite I have these days. But I know the stress of my dad’s medical case has got me on edge.
When he had his lung surgery and then a stroke a few weeks later in the fall, I lived on Trader Joe’s meringue cookies. Terrible source of calories. They aren’t great for my system either - too dry. But they dissolve! That’s the key for me - anything that can dissolve and/or is smooth and wet so they can make the journey through my twisted intestines.
It’s so maddening to live this way when I spent so many years being a Food Person!
I miss it so much. My diet has been hard on me lately. Maybe it’s because I’m not seeing an end in sight. Maybe because the pain has been worse and my usual tricks aren’t always helping. Maybe it’s because it’s a terrible way to live!
I’m at the point where it’s just easier to not put much in my body. It’s so much damn work to get anything out. Like I said before: my gut feels the best when there’s nothing in it.
This is not good.
I’ve got to find a way to get to someone that has some ideas. So much work to do things like re-organize my website to share my medical case. Sift through emails and messenger - which I’m super grateful for!! don’t get me wrong - I just wish there was a simpler way to get through this process. I can’t help but think of ways to streamline this process for other patients!
My doctor friend - who has known me since I was a small kid - had just the right amount of gentle reminding that I need to focus on myself right now.
Strange how hard that is for me. It seems like so much of the world has no trouble at all focusing on themselves! I have to WORK at it. Oh Codependency.
I should get dressed. My ride will be here soon and I have to find the print out of my medical case. I’m seeing a new doctor today that can hopefully help me get things like IV bags with nutrients via Medicare so I can stop paying for them out of pocket. Or rather, have my friends pay for them out of pocket.
This medical system is so fucked up.
I did have a really cool idea come to me last night. That’s when most of my ideas come to me - late at night while I’m doing my stretching and movement.
I’m not ready to share it yet but it makes total sense. =
Our medical system does not focus on HEALING.
They are in the business of making MONEY.
I’m getting ready to share my thoughts on money. I have an unusual relationship with money. Now, more than ever.
It’s a funny thing. When the ONE thing you want more than anything in life is something that money can not buy.
All I want is a gut and biochemistry that works properly.
Money can certainly help me work at that.
But money itself CAN NOT HEAL ME.
Winston Churchill famously said “do a favor to the poor, don’t become one of them.”
I failed that in epic ways.
But I see so much more from this perch, tumbling down the social hierarchy the last few years and landing in a place like Mercer Island cracked my heart and mind open.
Sometimes you have to truly experience something in order to see the truth.
Damn I’m tired today. Too many days in a row of activity. I even went to be “early” last night! I got into bed at 1am which is amazing.
I’m off to beg another MD to help me!
The only way out is through.
Gotta keep on plugging away at it.
Ok, Negrin out. (I MISS 30 ROCK SO MUCH BRING IT BACK TINA FEY.)