More on Choices…

In 2012, I came off Methotrexate (MTX), a powerful DMARD (disease-modifying antirheumatic drug). It’s widely considered to be the gold standard for treating severe RA, often in conjunction with one of the biologics you see in those unrealistic, misleading pharmaceutical ads. And this combination was occasionally somewhat helpful in controlling my symptoms. I know, “occasionally somewhat helpful” is not a ringing endorsement. But I’m six years in, and I’ve not found any combo of drugs that has given me more than 30% relief.

If this drug was a key part of my best cocktail, why did I stop taking it? Well, as users of MTX know, liver toxicity is a serious concern. So, along with the weekly injections, patients require regular liver checks, also known as monthly blood work. Yep, it’s pincushion central. And my liver function tests took a nosedive in July of that year. So, my rheumatologist took me off immediately.

Fast forward to today. It’s February 2016, and I’m desperate for something that will get me any relief from the crushing pain and extreme fatigue. Unfortunately, I’m mostly out of options. My last biologic stopped working, and because it’s Rituxan, I have to wait four months for it to exit my system to try another. (Aside: I’m running out of “others” to try, but that’s a ‘Choices’ post for another day…I smell a series here!)

While I wait, my best option is to restart a drug that has already proven itself to be detrimental to my liver. I’ll take every precaution, and my doc and I will be paying close attention to that particular organ. But my quality of life is paramount, so if there’s even a chance it’ll help, I’m taking it. So, tonight, I’ll be back to Thursday evening injections and Friday MTX hangovers. It’s a different kind of #tbt. That’s Throwback Thursday, for those not versed in the lingo. I’m not posting a picture on Facebook, but I thought I’d share it with you, dear readers. I don’t think it would make sense to anyone else.

WP_20160204_17_10_41_Rich_LI

Ain’t no party like a Methotrexate party…

 

Perfectly Said

During our summer travels, I’ve been blessed to visit with lots of family and friends.  This means that I’ve answered the “how are you feeling?” question many times.  Lately, my answer’s gotten complicated, so Lora and I have been discussing how I should best respond.

One of my favorite bloggers, Rheumatoid Arthritis Guy, nails it with this post.  I have never been happier or more content, despite the fact that my RA is uncontrolled, my physical health is poor, and as of now, I am unable to work.  Because of my attitude, I feel in control, which is absolutely huge in a life of daily unknowns.  He perfectly articulates “how I’m feeling”, even when “how I’m feeling” also includes bedridden.

The seriousness of chronic illness cannot be underestimated.  Neither can the power we have inside ourselves to deal positively with it.

Thank you RA Guy for helping me finding the right words!

Where Did This Blog Title Come From?

Why “Rude Awakenings”?  Well, as anyone with RA can tell you, mornings are notoriously tough.  We wake up stiff, swollen, and sometimes, completely unable to move.  It generally takes me 3 hours to feel as limber as I will for the day.  

Since I have a six year old son, a full-time job, and an active dog, it’s not realistic for me to lie in bed until 9 or 10 (though believe me, I take advantage of that opportunity whenever it arises).   So, I’ve found another way to start my mornings.  I often set my alarm hours before I need to start my day.  Trust me, this is a big deal given that I’m the farthest thing from a “morning person”.  While I wait for my body to catch up to me, I meditate.  I spend the time breathing deeply and focusing on three blessings in my life.  It’s turned the rudeness my body delivers in the morning into a daily renewal of my spirit.

Meditation is certainly known to be a beneficial exercise, and is something that many people engage in, so it’s funny that I found my way into a regular practice through illness.  I guess discovery often works that way, so I’m trying to keep the lesson to apply elsewhere.  Positive things can arise from any situation – sometimes we just have to look a bit deeper to find them.