Can't think of a title 4.27.19

Not all docs are like this! There are a wonderful ones who DO listen and DO care. Unfortunately, they are usually in the minority. I like following people in the chronic community because it’s very validating.

Not all docs are like this! There are a wonderful ones who DO listen and DO care. Unfortunately, they are usually in the minority. I like following people in the chronic community because it’s very validating.

Kitty is ok! Me not so much.

Waiting on blood work for the kitty but it could just be some aging symptoms which is what I was hoping for. Thank goodness because my mental state has been a bit off - it feels like it could be nutrient / biochemically related because it’s new. I’m not even sure how to describe it.

I’m not feeling great physically either. The body simply isn’t meant to survive on as little as I’m taking in.

The main thing I’m concerned about is I have very little appetite these last few days. I also tweaked my back which almost NEVER happens since I’m so vigilant about my routine. This means something is way off.

Bestie came by today with some new products - thank goodness for her, seriously she is a legit angel - and I tolerated sheeps yogurt which is a good source of fat and protein! Wahoo! Cow’s milk products generally aren’t great for me - they don’t get STUCK which is obviously much more dangerous than a little inflammation and bloating but I can’t rely on them for a consistent source of nutrients. Cow’s milk products cause inflammation. Inflammation can worsen GI symptoms and also increase cancer risk in the GI. I don’t need either of those.

It’s hard to write today. I’m too tired and there’s a lot of pain in my back. I’m about to leave to get acupuncture. It’s so beautiful and I want to be outside or do “regular person” things like everyone else. I’m glad I made it to a family gathering today for a short visit. I caught up with my cousins which was awesome. And I got some little kid hugs. I made a date to get hot chocolate with the littlest one and as I’m leaving he says “ok, we’ll talk and pick a day.” He is five years old! We’ll talk and pick a day…. Hysterical.

I’m trying really hard to focus on business stuff this weekend, not spending money etc. I have to keep reminding myself that I don’t get to do a lot of other things that regular people get to do! I’ve got to focus hard on finding answers. I think I lost a few more pounds. Some of my pants are legit falling off now. That’s never happened to me in my life - not even when I had horrible GI issues in my twenties or after my surgery.

Thank goodness for my big ass all these years! Probably saving my life. I miss my big ass.

No time to whine about body parts.

Must. Focus.

I’ve GOT to get a newsletter together so that people can refer doctors and The Hunt can begin. I’ve got to finally share the doctor referral form online. The whole process sounds very daunting. The last thing I want to be known for is the sick lady with GI trouble. Argh. I want to be known as a podcaster! A writer! An all around cool chick!

But those things are secondary to figuring out how to stay alive.

I can’t put it The Hunt any longer though. Sarah and I have made a lot of headway these past few weeks setting up the backend. I’m not sure I can figure out my Apple email now, it’s so fancy! (I hope to though!)

It’s all feeling really hard now. My brain hasn’t been good these past few days. I’m concerned my cognitive function is worsening - which is not such an easy thing to assess when my cognitive function may be worsening. I’ve hid a lot of my issues fairly well for a long time (or at least I think I have). But lately, my car seems to veer to the right. I told myself the tires need air. But lately, when I’m tired and stand up a little too quickly, I start to walk to the right in a weird fashion.

This is not good.

I haven’t seen a neurologist this entire time because I had so many other things to focus on. But if I’m not being safe, then I’ve got to know what the parameters are and what’s going on.

Fuck, they fucked up my body so bad! 18 weeks of chemo!! Why didn’t I question that more?

So many hits.

It’s amazing to me that I can trust the medical community at all. But dang, I love my two doctors I’ve recently met! They are so wonderful - it’s no surprise that they know each other and have a lot of respect for each other.

I should write him now and let him know about the recent symptoms. What an awesome feeling to know that I have a really smart endo that a) will write me back, maybe not with the info I’m looking for but he won’t blow it off b) he might know what the veering right thing is about - I don’t know what’s harder to fix: biochemistry issues or neurological issues. I’m sure it depends on what exactly is going on but still, it’s maddening that I keep having to learn a whole new organ system just to keep myself alive.

I shared this graphic above because it’s so apt. I don’t know if people outside of the chronically ill community ever follow pages like this! But it’s very validating for me to feel less alone in this whole process.

I hope this makes sense. So tired. It’s hard for me to focus today. I think I’m going to skip eggs and rest.

Much love,

Jules