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.

Twenty years before that sunny yet devastating day in July 1997, my grandmother, Nana, was beginning her own journey of a body and life attacked by chronic inflammation. This forced journey, with its daily assault of swelling and unspeakable pain, was one that I, too, endured, except only as a close observer. As a small child I grew up knowing that she had very bad arthritis (I didn’t understand what Rheumatoid Arthritis was until years later), and seeing her life become increasingly disabled often confused and scared me.

Nana and I were close, as I was to all of my grandparents, although I probably spent the most time with her and my grandfather, Papa. I was in their house all the time, and I often sat in the small, orangey-peach kitchen watching Nana cook, which is something she loved to do. And it’s something that became increasingly difficult for her as RA continued to ravage her body, especially her tiny, slender hands that were always whipping up her signature meatballs or veal cutlets or any other delicious Italian dish. The kitchen was her happy place, as was her spot behind her old, black Singer sewing machine in the basement. She had a strong talent for both cooking and sewing, and they brought much joy to her life, yet RA mercilessly stole both of these things from her.

To say that Nana and I are strongly linked would be an understatement. I am her granddaughter, of course, and I have her feisty Italian blood coursing through my own veins. I have her dark hair and eyes. I have her long straight nose, her 5’4″ frame, and her thick unruly hair. And I have her hands. Not only are they small like hers, but they hold her pain, too. That day in the doctor’s office when I was told that I have RA, I immediately panicked that my hands and feet would become quickly disfigured like my grandmother’s. The thought that this could very well happen, and while still a teenager, compared to Nana being in her 60s when getting the disease, was almost more than I could bear. I cried. A lot. I cried for my own pain and fear and grief, and I cried for Nana. I finally began to understand her suffering.

Nana passed away in March 2003 from stomach cancer at the age of 82. I didn’t get to say goodbye to her in person, but sobbing from a phone booth on a desolate street in Cork, Ireland, late at night. I was studying abroad there for a semester and I wasn’t able to get back home to Minnesota in time to see her before she died. She deteriorated quickly, which surprised us all. That night I wanted so much to be with her in that hospital room, with my parents and sister and family members surrounding her bed, but I could only tell her I love her and say goodbye from that little phone booth. Even though she could no longer speak by this point (this also happened quickly), I know she heard and understood me. Clutching the phone in this surreal moment, an ocean away from her, I told her how much I loved her. I know she knew this, she always knew it, but I also hoped that she knew how much I admired her strength and passion for life despite living with such pain. Struggling with RA myself since my diagnosis, I don’t think I ever really articulated that to her. I wish I would have.

I also wish that the cutting-edge drugs and treatments that were beginning to become available to RA patients in 2003 had been around much earlier. Right before I left for Ireland, I began taking my first biologic medication, twice-weekly injections of Enbrel, because the other RA medications I had tried since my diagnosis weren’t doing much to stop the relentless progression of the disease. By age 20 I already had a severely damaged right wrist, with its cartilage and bone eaten and eroded away from RA inflammation. What was next to become permanently damaged? And when? Not knowing what else to do, my rheumatologist put me on Enbrel, and luckily it seemed to work. My fears of collapsed knuckles and grotesquely bent fingers like Nana’s began to subside, as did the mental image I had of being confined to a wheelchair before age 30, or 25, even. What a relief! Something was working. Really working, finally. Thank God for these “miracle drugs!”

Eight biologics and 15 years later, I have understood from years of personal experience, successes, and failures regarding these drugs that sadly they are not a miracle or a cure. Biologic medications have amazingly transformed the lives of many RA patients, enabling people to live much healthier and more active lives than they might have if not for the drugs. This is wonderful and I’m so thankful that these medications exist. What would my life look like now if not for the biologics? I shudder to think of it. But something I do think about a lot is this: What would Nana’s life have looked like if these medications had been available to her?

When my grandmother first began to have RA pain and swelling in the late 1970s, there weren’t that many options available, and I think she tried them all. Her body was constantly on fire and attacking itself: her hands, her feet, her wrists, her knees, and even her skin. Nana not only suffered greatly from RA for many years, but from severe psoriasis as well. If I could jump into a time machine and bring her some biologic drugs to help ease her misery, I would do it in a heartbeat. Unfortunately, this is reality and the reality is that these highly effective drugs were researched, developed, and made available to patients too late to help her.

The love I have for my grandmother, the love I have for my RA friends and everyone who suffers from the debilitating pain of RA, and the love and compassion I try hard to find for myself—this is why I am a passionate supporter of scientific and medical research, drug development, and clinical trials. Our lives are at stake and a cure is needed for these life-ruining diseases yesterday. The only way that people will get their lives back, that a cure will be found, is if new medications are developed and made accessible to patients. Clinical trials are a crucial part of all of this; we need them and we badly need more people to participate in them. 

Even though living with RA often makes me feel frustrated and helpless, I believe that fighting against this disease isn’t a helpless or hopeless battle. Patients have power! We have the power to bring about awareness and even change just by sharing our stories. When you consider supporting medical research and clinical trials, I hope you will remember Nana’s story–and mine. 

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?

Why Don’t You Just…?

Why don’t you just give up gluten? Why don’t you just stop eating sugar? Why don’t you just go to the gym? Why don’t you just start taking probiotics? Why don’t you just lose weight? Why don’t you just stick to your diet?

Do any of these why-don’t-you-just questions sound familiar? Are there any others that you hear? Here’s my latest article for RheumatoidArthritis.net that goes a bit into this peeve of mine.

“Why Don’t You Just…?”

One thing I’ve definitely learned from living with RA for 20 years is this:  Nothing that involves RA is easy. It’s all difficult and complicated and confusing. There is no “just do this” or “just do that.” The word “just” implies that what you’re about to do or you’re going to tell someone to do is easy, simple, convenient, accessible, fast.

I’ll say it again and I’ll say it a million times over and over for the rest of my life: RA is not easy. It just isn’t.

Hope you like the article!