Two thumbs way the fuck up

My new meds will be delivered on Tuesday! Woot!! Finally.

I had to have a chat with the specialty pharmacist and it was sort of odd. My takeaway is that I should try to not get sick (lol ok duh), and also avoid grapefruit juice. Apparently, he’s going to call me once a month. Sigh. These fucking biologicals are no joke.

He was like: on a scale from 0 to 10, 0 being not at all and 10 being perfect, how well do you feel your condition is being managed?

Me: Two.

Him: So you’re saying there’s room for improvement? Haha.

This guy has jokes. Great. 🙄

Still though…this is excellent news.

My morning in texts

At 7:15 am

To D:

Good morning, babe. I’m canceling my plans for tonight.

A group text to the girls:

In which I explain that my knees are fucked and I’m not up to going out tonight. Oh and further explaining that I don’t want to pick a new date until I’m on the new meds, because this is happening ALL THE FUCKING TIME NOW.

A separate text to just my bestie:

Apologizing personally. Sending her this pic as way of explanation, despite the fact that she doesn’t need it and loves me unconditionally:

Yep! That’s huge, right? Both are swollen, but the left one is crazy. It’s going up into my thigh. Ughhhhhh.

And a text to my business partner and office manager:

Telling them I’m coming in today, but cannot cover the court hearing at noon, and will probably need to leave early.

SIGH

I sent another email to my doc last night requesting another round of prednisone while I wait on the meds. I’m hoping she’ll go for it. This is ridiculous.

3:10 pm

And I might be ready to finally get some stuff done. Even if it’s only housework. My brain is still too foggy to do any legal work. Tramadol and exhaustion…bad combo.

My goals for the evening: a bit of laundry and a trip to the grocery store. Oh and making dinner, obviously.

Oh and I guess I do need to do some docket prep for tomorrow morning. Luckily, that’s going to be quite simple.

I’m looking forward to having less of these awful flare ups. Not only do I feel bad physically, but also emotionally. I just feel like such a fucking waste on these days. I hate this feeling of helplessness. And also the awful moodiness that rises up. It’s hard to be in a good mood when you feel this way. I try to fake it til I make it, but I’m not always successful. As a result, I’ve hidden in my room most of the day.

Time to emerge. Wish me luck!

🙌🏻

My doc took one look at my severely swollen knees and was like yeah that’s gotta go. So we’re adding a new med into the mix, a biological, which are the only types that have ever worked for my condition in the past. It’s a pill instead of an injection, so that’s cool. I have to wait for my labs to come in okay and then she’ll call it in, but it has to go through the mail pharmacy (because it’s crazy expensive) so it will be a few days before I get it. Probably best to start it over the weekend anyway.

It felt good to hear her say that now that I’m six years out from breast cancer, the biological drugs are finally available to me again. This gives me hope that I’ll eventually get to feeling like myself again. If this particular medicine doesn’t work, then one will. I could always go back to Enbrel. A weekly shot in the thigh is nothing compared to the pain I’ve been living with.

The downsides: higher risk of infection, including shingles, and the ever present lymphoma risk. Sigh. BUT…what’s the point of living a long life where I feel like this all the time? I feel damn near disabled on days like today. I want quality over quantity. It’s worth the risk.

I’m all out of spoons

Both of my knees are so swollen that I can barely walk. My hands and wrists hurt, and my ring finger is too swollen to wear my wedding ring. If the doc doesn’t help me this morning, I’m going to cry.

My appointment is in an hour. *fingers crossed*

My original plan was to come home after the appointment and work, because I’m swamped. That plan may need to be revised considering how awful I feel. It may be a back to bed, napping, reading, and Netflix kind of day.