Brain Dump: Auto Immune Edition, part two

A few months ago after years of uncertainty and shitty doctors I finally got diagnosed with Seronegative Rheumatoid Disease. I’d known for a year that I had a form of inflammatory arthritis and it sucked, but finally learning that it was rheumatoid was hard. RD is a full body immune system disease with no cure and the ability to disable me. It’s scary as hell and although I’m glad to finally have a name for it, it’s very overwhelming too.

This disease is kicking my butt physically and emotionally. I feel like I’ve been an awful friend/daughter/sister/aunt/coworker lately because my life revolves around flares, meds, and trying (but failing) at being “normal.” It may not always seem like it, but I really am trying. It’s just super hard now that I know it’s never going away. In the past year I’ve tried five different treatments and none of them have worked as well as we want them to. My current cocktail is working to lower my inflammation, which is great, but I still feel like crap all of the time, some of my symptoms are getting worse, and new symptoms keep popping up. It just sucks. There’s also some really scary things that could happen to my body but I’m not ready to think about those too much. And I’m sure some people get sick of hearing about it, but until you have an incurable disease you have the privilege of being annoyed by things that are uncomfortable. I don’t get to turn this off though, so I’m going to keep sharing and hopefully educating others. The pain, fatigue, brain fog, and emotional toil are ridiculously hard to deal with. But I try my best.

The week I found out about my diagnosis I was pretty sad. Like, “Holy crap I could be physically disabled by this and then what?” kind of scary/sad. It also meant having to let go of some dreams that I have that simply aren’t physically possible anymore and well… that sucked. Like my chances of having a kid the traditional way… gone. My body is too old and too sick to handle that. Then there’s the fact that I can no longer be on the Be the Match donor list for bone marrow. I’ve been on the list for 23 years and this week I had to tell them that I had to be taken off because people with auto immune diseases can’t donate.

So in the midst of my first round of the grief cycle I got a French Bulldog puppy. Vinnie was a totally expensive impulse buy and by getting him I broke my promise to the Elder Cat that I wouldn’t bring a pup into the house until after she dies (she just turned 17). But it was one of those moments when I saw his sweet little face and just knew he was supposed to be mine. Not to mention the fact that I kept thinking, “What if I wait for Kira to die and then my body isn’t able to handle a puppy?” I wasn’t able to give up that dream too.

He has been a pain in my butt and the joy of my life. Even Elder Cat tolerates her new large baby brother most of the time. If there’s one thing this disease has taught me, it’s to not get so upset over the little things. Yes, my room, and car and desk at work are utterly messy, and yes it bugs me. But a messy room isn’t going to ruin my day, I can’t let it. Sometimes when I’m in too much pain or I’m too exhausted to even think about cleaning, all that really matters is resting and trying to find comfort. If Vinnie pees on the floor, or chews on something like my table, it’s annoying (sometimes really annoying) but I remember that he’s a baby, he’s still learning, it’s not the end of the world. Then when I’m feeling awful and he’s snuggled up with me and loving me unconditionally or he makes me smile when I’m feeling horrible… that’s what matters. That doesn’t mean, however, that everyone else has my laid back attitude though, and I know that it can be hard to deal with me… I tell Vinnie pretty regularly that Grandma is going to lose it if he doesn’t stop with the occasional pee accident or chewing episode.

I bought a cane recently. I don’t use it regularly yet but I know there are times it’ll be helpful. I have my grandma’s old cane and I used it once but I figured that if I’m actually going to embrace using a cane on bad days, it’s going to be a cute one, not grandma’s old silver thing. 🙂 The weekend I ordered it I had an awful flare and when I was laying in bed awake and in pain from just going to dinner and playing Wii with my Doodlebutt I decided I needed a cute cane for those bad days. Maybe I’ll get lucky and the next medication will be the one that sends me into remission so I’ll have to keep the cane in storage. Maybe it’ll just be something to have for really bad flares. That would be awesome. But I don’t feel the need to put off something that’ll help me be more comfortable just because I’m “too young” and “shouldn’t” need it. After all, it was that kind of thinking by my so-called doctor that put off this diagnosis for the past ten years while things just got worse. If she’d just listened to me and admitted that she didn’t know how to treat me, maybe I could’ve found out about my RD when it was still mild and wasn’t as severe. Ten years ago when my pain was just transitioning from occasional to daily I was 80 pounds lighter than I am right now. I was able to go for walks, do all day shopping sprees, play on the playground and do all sorts of things that I can’t do now without it throwing me into a flare. It sucks harder than I can explain; and honestly it’s put me in a really crappy place emotionally lately. I haven’t done any writing since last June and I’ve barely done any knitting either, but I’ve been thinking about both lately so that’s good, right? Things have been crappy, but I still have hope, mostly.

I hope for the right cocktail of meds that’ll help me get some of the old me back out to play. She’s still in there, she’s just busy battling the Rheumadragon and an insanely broken immune system. 🙂 My point in all of this rambling is to say that yes, I know that I’ve been “off” lately and I really am trying to get back to some semblance of normal. But I’m having a hard time making the adjustments and I promise that if you continue to be patient with me I’m still the girl you know and love. I actually started this post back in November, but it’s taken me until now to finally post it. I joined the Cure Arthritis Crew a while back and had all of these ideas of writing about living with RD so maybe that’ll happen soon!

So in the words of Al Roker, that’s what’s happening in my “neck of the woods.”

 

Now, let’s see what the girls have to dump. 🙂

Jessica D | Deelylah| Torrance | Siobhan | Kris | Bronwyn | Jessica J

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