Nothing is lost forever.
In this world there’s a kind of painful progress.
Longing for what we’ve left behind,
and dreaming ahead.
–Tony Kushner, “Angels in America”
Good Morning?
Are you a “morning person,” or do you absolutely dread and loathe mornings, like I do? No matter how early I go to bed or how much sleep I get, I always have a hard time getting up in the morning and I rarely feel well-rested. Or rested at all. I was just reminded of this when an article I wrote a few years ago for RheumatoidArthritis.net popped up in my Facebook feed:
I wrote this article when I first started substitute teaching and I was working at a long-term job subbing for a kindergarten class. Even though the article is now a bit old, my feelings about mornings remain pretty much the same. I hate them! I wish I didn’t, but I do. Nevertheless, I’m often forced to drag my stiff, painful body out of bed at an early hour, but THANK GOD FOR COFFEE!
Also, if you’re interested, please “like” and follow RheumatoidArthritis.net on Facebook! They have lots of great articles posted from several different patient advocates living with RA on a huge variety of topics.
Check it out here: facebook.com/RheumatoidArthritisDotNet
Thanks for reading and have some GOOD mornings!
I’ll still be in bed.
Clinical Trials: An Introduction & Journey
This July marks my 21st year of living with rheumatoid arthritis (RA). I was diagnosed with this painful, debilitating autoimmune disease at age 18, right after graduating from high school. It was a terrifying and devastating blow, and I remember waking up every morning wishing that the pain and disease would just leave me alone and go away. Sadly, it didn’t go away and it never has, even for a temporary period of remission. Also since those first days of diagnosis and wishing the illness away, I desperately wished for a cure—or something to let me get back to being a healthy and active teenager, instead of someone who could barely get dressed or wash her hair on her own.
Today, over 20 years later, I’m still wishing for a cure for RA, and in the meantime I’m hoping for the development of better and more effective medications and treatments to help ease my pain and stop joint damage. Ultimately, that’s what all of us RA patients want and need, and we need it urgently. This need and the realization of its importance in the treatment and hopefully one day cure and prevention of the disease is what has finally made me begin to get involved with clinical trials.
Just Add Exercise?
The “opioid crisis” is something that affects my life every single day, as it does for many other chronic illness patients I know. Here’s a recent article I wrote for RheumatoidArthritis.net about this issue once again: “Just Add Exercise?”
Sadly, with all of the misinformation out there regarding opioid medications for chronic illness patients (well, any patients), I know I will continue writing about this subject. So many patients who take and need these medications are suffering great harm due to the continually increased restrictions on them. And these are patients who take opioids responsibly, safely, as-prescribed, and under the care of a physician (such as myself).
STOP THE STIGMA: chronic pain patients are NOT addicts!
I See You
The Power of Love
Disclaimer: This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much needed awareness about the power of breakthrough research.
Twenty-one summers ago I had just graduated from high school when I received the diagnosis that changed my life forever: Rheumatoid Arthritis (RA). Sitting in the exam room on a chair next to my mother, tears fell down my face and panic rose in my chest as I heard the doctor give me the crushing news. In total shock, I couldn’t believe what I was hearing. No. No, I can’t have that. I’m too young! Images of twisted, misshapen, and mangled fingers filled my mind. Then the thought that the excruciating pain I had been feeling in my own hands and feet over the past several months would never go away terrified me. How can I live with this forever? I’m only 18.
Starting Simponi
Two days ago I did my third Simponi injection since starting the drug in April. So far, so good; I haven’t had any reactions or side effects or problems from it. And, the injection itself is almost painless, which is a very pleasant surprise, compared to the severe stinging of Enbrel and Humira. I don’t even have to ice my leg or stomach before doing the shot!
But, is it working? No, not yet, I don’t think. My rheumatologist told me that it can take three months at minimum to possibly begin working, and longer than that, more likely. So here I am at month three, pretty desperate for it to start doing its magic. It’s been about five years now, and several failed biologics, since my RA has been stable and well-controlled on a biologic (Remicade). I’m so ready for this to work!
Here’s an article I wrote for RheumatoidArthritis.net about starting my 8th biologic medication: “Starting Simponi”
Thanks for reading!
