Today is the colonoscopy yikes 6.20.19

Today is the colonoscopy yikes 6.20.19

I want to crawl out of my body. That’s the only way I can describe how I feel right now. I want to crawl out and have someone else do the rest of the day, like how those bratty families had someone else have their kids SATs (one day, we need to discuss what an awful head fuck that is for all those kids, how’s that for feeling competent and confident as they enter life? Even my own parents don’t have FAITH in me. Without even discussing classism).

I digress. As usual.

Lsat night actually went pretty well. I have my prep down pat OF COURSE. I’ve had probably 20 colonoscopies at this point in my life. My doctor’s office didn’t even bother me sending me instructions on how to do the prep or give their recommendation on what to do.

I’m too cheap to use the ones they offer. One of them is nearly $100!

Nope. I buy the bottle of Miralax for $13 and keep my little laxative pills year to year (I mean, do those REALLY expire?) and some ginger ale. Good to go.

I drank nearly the entire bottle of Miralax by 7:30. Usually they have you start the whole thing around 5pm. In my old life, I’d start it earlier so I could get to bed earlier. I’d also barely eat the day before. A lot of people make the mistake of eating a lot the day before which just makes life more difficult on prep day.

For anyone new to the world of colonoscopies, they aren’t that bad! You drink a bunch of stuff, clean out your system, and head on in. Once the prep is done, the whole thing is super simple.

But I woke up and nervous that I didn’t clean out well enough so I’m now drinking that glass in the photo above. I don’t have much

Read More

I'm wigging out 6.13.19

I'm wigging out 6.13.19

I couldn’t remember if I’d given myself an IV bag last night. It was completely blank. I knew I must have because I could feel it in my body.

But I couldn’t recall doing it that day. Do you know what helped me remember?

I remembered writing in here that I was in bed giving myself a bag. Then I started to remember other details.

I think I’m starting to get super scared about my colonoscopy next week.

You’d think it would get easier as I get further away from the original diagnosis.

But it doesn’t. The fear grows. What if it’s my turn next? I can’t help think.

My friend that had Stage 4 cancer last summer got bad news about her blood work. I wish they could track my blood work for ovarian cancer. But I never had increased CA-125 levels in the first place.

My dad is…I don’t know. He had a “good day” yesterday. He had to go to the hospital for his infusion and it took hours and hours. But mom was so glad he wasn’t having his nose bleeds (they have him on such high doses of blood thinners that he gets them now - they’ve got to control the clot problem since they can’t operate on him due to the breathing issues). And he wasn’t coughing as much either.

I said: this is what happens when you’re medically fragile, mom.

Read More

It was a magical weekend 5.20.19

It was a magical weekend 5.20.19

did it! I had a fantastic weekend and felt ok physically and mentally!

This is a HUGE relief. If I couldn’t do a short road trip in my area, I was afraid my world would shrink even more than it already has.

Just thinking about that terrifies. I had a lot of safety precautions in place, just in case.

But all went well.

On the drive home, I was actually sad to be heading back. I didn’t care that I was sitting in traffic in Tacoma! That’s how happy I was to be out of the cocoon.

Out of respect for the community that has graciously welcomed me into their fold, I won’t be sharing any specific details about what went on during the weekend.

What I can share is that it was an incredibly healing experience. This photo was taken after I did an ancient ritual. My entire outfit is soaked in sweat here! And I’m very pale, but I did remarkably well given the situation. (Women wear skirts so I borrowed my friend’s skirt that is too short for her now!)

Let’s see if I can share a little bit without disclosing too much.

In 2017, I wrote a note for my 2018 goals which were: go to an improv class (check!), find a spiritual community that focuses on health (OMG CHECK CHECK CHECK this past weekend!), and figure out how to travel, even close by.

Read More

Warm weather is hurting me 5.7.19

Warm weather is hurting me 5.7.19

I’m not doing so well in this warm weather. I was so wrecked yesterday from a long doctor appointment, the weather and my class, I didn’t have time to write in here!

I feel like such a Debbie Downer that I’m not thrilled about the warm weather.

Not being able to eat hardly anything as a former culinary person is one kind of hell.

Being trapped indoors on beautiful days is a whole other level of torture.

Climate change is definitely going to be tough on a lot of medically fragile and elderly. Our systems can’t always handle the heat.

I’ve been giving myself daily IV saline bags (sometimes with amino acids and vitamins) since May of 2017. I’ve noticed my need for more and more saline has gone up, slowly over the past two years.

During the winter last year, I NEVER needed more than one bag. This winter, I gave myself two bags per day quite a bit.

There is a drug

Read More

I don't like goat milk 5.3.19

I don't like goat milk 5.3.19

I’m working so hard on figuring out what I can eat and what I can’t eat. That’s why it’s especially irritating when a doctor I barely know acts so suspicious about whether I’m trying new foods.

OF COURSE I AM. Geezus.

I got a little overzealous last night and downed some carrot juice and devoured half of this non-dairy cheesecake (it’s not that big, but still, for me I must do small quantities slowly for pretty much anything) from Whole Foods that I bought when I picked up the goat milk.

Today, I’m paying for it. I don’t know which one is causing the trouble. Maybe neither. Maybe both.

This is what happens when I get a little cocky - or I’m just starving - and the pain hasn’t been so bad. I like the cheesecake (well, like might be a strong word) but I like how it makes me feel like I ATE SOMETHING. Liquids just don’t cut it! And three eggs is all right…I don’t think there is going to be any eggs today, unfortunately.

It’s astounding to me what the medical world requires in order for me to get more nutrients via my IV. It would be so helpful - and way less painful - if I could get more through my blood rather than forcing my gut to try and absorb things that may or may not be aggravating it. Nope. They act like I’m asking for a morphine drip. While launching into outer space.

Pain is so strange - and for the record, I have really high pain tolerance, always have, just for fun I’d play soccer in high school without shin guards and now…? - when I’m not in pain, I feel like I can be productive! Catch up on computer work!

Read More

Taking a moment to BREATHE 5.2.19

Taking a moment to BREATHE 5.2.19

I realized I feel less frenetic than I have in quite some time.

Though my diet shrank, whatever was causing the worst of the symptoms starting in mid-February seems to have calm down. I’m holding the current weight steady. My dad is…well, he’s hanging in there. They had to take him off the immunotherapy because his lungs overreacted to it and caused a ton of coughing. He’s now on prednisone! I keep warning him that he’s going to feel like he can climb Mt. Everest, but you know how that kind of advice goes over with parents. I have a doctor team in place, in case things get bad again.

But they saw his doctor early this morning and he seems hopeful that they can take care of my dad. I, of course, don’t trust any medical people easily. But he is highly recommended at SCCA and he’s really kind to my dad. That matters a lot.

I know that another shoe could drop.

Read More

I like feeling really strong 4.28.19

I like feeling really strong 4.28.19

I wear an extra small now.

I loathe even writing that.

It’s weird to have something that so many people want so badly - or think they want - and to hate it.

I opened this Athleta catalogue - I’m not sure how I even started receiving it since I never shop there - but I like looking through the workout clothes. I’ve got to let go of the past and give away - no THROW AWAY, they are sooooo old - my old workout clothes. The pants literally slide off my hips now! What the fuck!? I’ve had hips since I was 16 and no amount of healthy eating or workouts has changed that.

Until now.

Now that “society” is finally embracing super strong looking women like the ones in this photo - and women of color woot! - I’m turning into this frail little lady. ARRRRGGGGHHHH! It’s like seeing gluten-free waffle cones at a vegan ice cream place - all the foods I love and can eat are EVERYWHERE and I can NOT EAT THEM.

My timing sucks.

As I’ve mentioned in here before, I’ve never aspired to be waif-y thin. I’m trying to remember when my ideas around that started forming. I feel really lucky I didn’t obsess about my body shape much when I was young.

I was WAY more concerned with

Read More

I got labs at home 4.5.19

I got labs at home 4.5.19

Have I mentioned yet how much my family appreciates nurses?

They are the unsung heroes of the medical world, FOR SURE. I’ve been having home nurses come to my house for almost two years now. They changed the bandage on whatever needle is in me - well, when I had a port in my chest, they had to put in a NEW needle. This is one of the reasons I prefer the PICC line - I don’t have to get poke every week. It sucks because I don’t get that ONE night where I get to sink into the bath and I never get to go swimming.

But really, these days, that feels like a small loss. And I LOVE swimming and taking lovely baths!

In the grand scheme of things, I can’t worry about that now. It’s interesting how something that sounds SO hard to lose happens, and over time, I get used to it.

I got my labs drawn by my home nurse this morning WHILE I WAS IN BED. Do you know how incredibly dreamy this is? The stress of trying to GET to my healthcare is a large portion of my stress. Driving, parking, navigating new buildings, getting lost, feeling stressed, paying for parking, forgetting where I’m driving…. So much of it makes my life hard.

That’s why having drivers lately has been absolutely fucking amazing.

Read More