Brain Dump – Auto immune edition

(positivelyrheumatoid.com)

I had all good intentions of writing up something great for this week’s blog which is a brain dump of whatever we want to talk about. Buuuut, life keeps getting in the way.  Kind of like how despite calendar reminders and alarms, I keep forgetting to do these weekly blog posts. Or if I do remember I’ve missed the deadline or simply don’t have the energy to do it.  

Methotrexate (MTX) has taken over my life. It’s a chemotherapy drug that can be used to treat auto-immune diseases. All of the side effects you think of when you hear chemo and think of cancer can happen when taking MTX. Hair loss, nausea, brain fog, extreme fatigue… yep.  I’ve been on it since March for inflammatory arthritis and have been pretty lucky. The first few months were hard but tolerable and I even had days when I felt better than I’ve felt in years.  My biggest side effect was brain fog which was annoying as hell, but manageable-ish.  I’ve learned how to give myself the injection each Friday night, and was feeling like a badass warrior for taking on the drug.  Then a few weeks ago my rheumatologist upped my dose. I thought, “Sounds good, I’m ready to feel even better!” 

Oh, no, my friends… there has been no feeling better. There’s been feeling worse and new side effects that I didn’t have before.  I don’t think I’ve worked a full week since starting the new dose and this week I finally broke down and took the rest of the week off so I can be at home feeling awful instead of trying to fake it at work. I barely made it through the day Tuesday while trying to contact all of the families that I visit and put together mailings for each of them (next week I’ll be at a conference for most of the week and won’t be seeing families then either). I sent them all a letter self disclosing the troubles I’ve been having and apologizing if I’ve seemed a little off for the past few months.  Some of my families knew what was going on, I even have a warrior mom that I see who is on the same drug so we trade stories sometimes, but  some didn’t know the full story other than that I was having medication troubles. 

Admitting that I needed to take a break was hard. Telling my families that I’ve been struggling was harder.  I’m the helper, I’m their go-to, and seeing their kiddos is truly one of the things that keeps me going.  But when the thought of a few days off with no commitments was the only thing that got me out of bed on Tuesday, I knew it was time.  Time to stop trying to be Super Woman and admit that I need to rest. I hate feeling like I let my clients down, but they have all been great and wished me well.  I still feel guilty though.  But I told them that I can’t preach self-care to them if I can’t do it for myself, right? 

I don’t know if the time off will help; I hope it will though! I don’t even know if this drug is going to work for me and if I’ll have to start all over with something else… but what I do know is that for the next five days I’m off duty and I’m going to take as many naps as I can! And I really hope I can make a dent in cleaning my bedroom because it’s beyond embarrassing right now. It’s hard to put things away when you’re either in ridiculous pain, feeling like you’re going to vomit, or you’re so tired you can’t keep your eyes open though, ya know? 

To my fellow chronic illness warriors… keep your head up the best you can! And if you can’t, take a nap and feel damn good about it. 😊

Let’s check out what the other girls had to dump today!

Jessica | Bronwyn | Gwendolyn