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.

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Starting Simponi

simponiTwo 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!

In Search of Lost Time

 

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How did it get to be the first week of June?!

It’s embarrassing for me to realize that I haven’t posted anything here since the first of April. And I apologize for that. Many things have happened though! So what have I been doing all of this time, other than hiding away with a book?

(ok, there was plenty of that, I admit)

APRIL – JUNE

-Continued treatment for bronchitis = another antibiotic
-Substitute teaching (this saps so much energy)
HealtheVoices conference in Chicago! (WONDERFUL!)
-Beach trip to Florida with family
-Severe RA flare-up in both feet and ankles
-Oral thrush treatment while in Florida
-Road trip to Omaha with my sister to see U2 play a show (WONDERFUL!)
-Chronic tension headaches and jaw pain come back with a vengeance
-Started acupuncture again
-Suspected sinus infection, yet again (as of 6/5/18)

Way more sickness and pain than fun has been happening during these months, sadly, but I’m feeling hopeful that the tide is turning. HealtheVoices was an incredible and inspiring experience once again (I’ve attended twice before) and I do plan to write about it soon. I must!

The Florida and Omaha trips were big lessons in self-care and I still need and want to reflect on both of those experiences.

I hope everyone is having a fantastic and lovely spring/summer and that it’s as pain-free as possible. Apologies again for lapsing so badly with this blog! I have been keeping up with my RA Facebook and Instagram pages, though. Please follow if you don’t already! :)

Let It Snow?

Oh the weather outside is frightful (as “springtime” usually is in Minnesota), but my joints feel so delightful. Well…maybe not delightful, but I’ve noticed that they’re definitely a lot happier and manageable during cold, dry weather. The heat and especially the humidity of summer greatly increases my pain, swelling, and, well, RA discomfort and misery. I know that I’m probably a bit of a weirdo and in the minority for preferring cold weather instead of warm/hot weather for my RA, but I can’t be the only one–right?

Here’s a link to my latest article for RheumatoidArthritis.net about this:

“Let It Snow?”

I’m really sick of seeing snow and especially in April. Yes, we still have snow here in the frozen tundra of Minnesota; I’m looking at the disgusting stuff right now through the window as I write this. I desperately want sunshine and green grass and no more cold, gray, and snowy days. I just wish my RA liked summery, warm weather too.

You Can Start Where You Are

 

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This is something I often struggle with: That I can’t go back and change the beginning–getting a painful and debilitating chronic illness when I was 18. Or any other “beginnings” in my life that I wish I could change. But! C.S. Lewis reminds me that all is not lost and I do have the power to try to change those bad beginnings into something positive and good, no matter where I am in my life.

It’s never too late to start again, right?