I don’t know about you all, but as hard as I try to stay positive, I have my negative, lonely RA days too. When you wake up in sweltering pain knowing that it’s going to be a difficult day before you even get out of bed in the morning, it’s easy to feel down. On day’s like this, I personally find myself asking myself a million questions. Like, “why was I targeted with this painful chronic disease called Rheumatoid Arthritis? Why do my joints constantly ache? Why can’t I jump out of bed and cease the day like most 29 year olds?” When this happens, I have to remind myself that I’m not fighting this battle alone. Plus, it could be much worse… I could be dying.
With the numerous advances in RA treatment, life can be very close to normal for the 1.3 million Americans living with Rheumatoid Arthritis. But that doesn’t mean we can just sit back and wait for other people to create solutions for this crippling disease. Members of the arthritis community have to stick together and talk about our issues if we ever want to help solve them.
In this next section, I’d like to highlight the journey of a fellow Rheumie from Chicago, named Maureen Niswonger. She represents one of the many positive faces of Rheumatoid Arthritis.
Maureen grew up in a healthy, happy home. Like many kids from Chicago, she began loving baseball before she could really even understand what a home run was. When Maureen was young, her mother was diagnosed with severe Osteoarthritis. Maureen now believes that her mother may have been misdiagnosed all along. She may have actually been a Rheumie too.
In early 1998, Maureen was in her late 40’s when the downward spiral began. Maureen fell and injured her wrist. Next thing she knew, she was admitted into surgery and soon after that, started receiving regular physical therapy treatments. She was constantly in pain. Her hand began swelling. She started getting cortisone injections.
Maureen lived in this state of constant pain over the course of the next two years before she was finally diagnosed with Rheumatoid Arthritis. She found herself missing work and rescheduling meetings until she was treated by one of the head Rheumatologists at Northwestern University.
Maureen tried Methotrexate and when that wasn’t working, her doctor recommended Infliximab infusions, otherwise known as the drug Remicade. Remicade is one of three major TNF (Tumor necrosis factor) inhibitor medications. This drug has been successful in treating Maureen’s Rheumatoid Arthritis for many years. As most Rheumies can relate, we typically find ourselves turning toward several treatment options before finding one that helps get the symptoms under control. In my case, I’ve probably been through 20 different combinations of drugs.
Shortly after finding the treatment plan that best fit her needs, Maureen could again focus on her career along with regular social and physical activities. She contributes her treatment success to healthy eating, regular exercise and the right medication. She now bikes, plays golf, skis and even hiked in Antarctica! How’s that for success and motivation?
I firmly believe that our community of Rheumies have to unite and fight this battle as one. The more we fundraise, generate awareness by sharing our stories and learn about this disease together, the more powerful and effective we can become in making our own lives better. So, if you take anything away from reading my blog, please just know that YOU ARE NOT ALONE. Let’s stand together and make a difference!!
If you haven’t found relief yet, please know that there is something out there that can and will help alleviate your RA symptoms. It may come in the form of a medication, a special diet, a yoga routine, a hug or a prayer. I just hope you find the treatment plan that works for you sooner rather than later so you can enjoy most of your days, if not all of them.
What is your RA story? What methods of treatment do you find most successful?
The Chronic Babe site is designed to give women living with chronic diseases like Rheumatoid Arthritis, a spot to connect via laughter, shared medical tips, career successes, embarrassing stories, boy gossip and more. Ultimately, Chronic Babe provides readers with an escape to a fun place where girls living with illnesses are not alone. And it does all of this while making these women feel sexy and proud.
Here’s a snip-it from yesterday’s newsletter. This is for all you sexy, wonderful sick girls out there! I hope you find Jenni’s writing as powerful as I do.
“The other day I tallied the number of doctor appointments I had in one week: 5. Then I thought about how many business calls were piggybacked on either side of those appointments, and how for each call I had to put on my best business face (voice!) and not let on that I wasn’t feeling well. Then I thought about the deadlines I met, the challenging conversations I had, the time I spent patiently explaining rheumatoid arthritis (changed from fibromyalgia) a to a new friend who was confused, the numerous bus rides I took while in huge pain. For a moment I was tempted to look at the tally of everything and throw a big ol’ pity party. Why me? Why do I have to deal with this big pile of awful? And why do I have to show up for everything with a great attitude, being helpful when I’m exhausted and compassionate toward others when *I’m* the one in pain?
Why? Because I’m brave. Yup, I said it: I’m brave.
I’m not trying to be braggy here. I’m not puffing myself up. I’m just being real with you. I’m brave. SuperBrave. Every day—in spite of pain, fatigue, headaches, exhaustion, cramps, stomach irritation, blurry eyesight, dizziness, memory problems and, did I mention, pain—I show up for my life. I work, I maintain relationships, I put on makeup and cute clothes, I volunteer in my community, I nurture my creativity. And I do everything I can to maintain my health, including (but certainly not limited to) exercising, eating right, practicing sleep hygiene, meditating, praying, taking my meds on schedule, asking for help, doing yoga, journaling and following doctors’ orders. I am totally awesome!
Guess what? You are too! You wouldn’t be reading this if you weren’t trying to be the best Babe you can be in spite of illness. I bet you do a ton of things to take good care of yourself. I bet you do a ton of things to care for others as well. And I bet there are people in your life who don’t have a clue how hard you work to keep it all together, to THRIVE and not just survive. I’m not just guessing here; I get your emails every day, talk to you on the ChronicBabe Forum, meet you at events. I see you out there! You are some of the bravest, most hard-working, inspiring folks I’ve ever known. And it’s YOUR bravery that keeps me motivated on my worst days.”
So to all my RA affected readers out there, remember that you are totally awesome!! I believe that there isn’t much out there that you can’t do. Stay well and stay active because while your body sometimes gives up on you, you can’t give in to the disease by giving up on yourself.
Visit chronicbabe.com to read other inspirational blogs and to sign up for Jenni’s newsletter. I hope Jenni’s newsletter brightens your day like it does mine.
According to the Mayo clinic definition, Rheumatoid Arthritis is an autoimmune disorder which “occurs when your immune system mistakenly attacks your own body’s tissues. In addition to causing joint problems, rheumatoid arthritis can also affect your whole body with fevers and fatigue”.
Let’s think about this for a moment… That means my immune system really attacks my own body’s tissues? Yes, once you are diagnosed with this debilitating disease, you learn that your body will constantly fight YOU for the rest of your life. Imagine that… Your body has no control of your body. Scary stuff.
In my case, pain moves throughout different joints in my body, but it does so symmetrically. So if my left wrist is in agonizing pain, my right wrist is sympathetic and the pain in my right wrist becomes excruciating too. The same is true in my toes, my fingers and most often.. my hips. My hips burn constantly. When my disease flares up in my hips, knees or ankles, I can barely walk let alone make my way up the stairs to my second floor bedroom. When my fingers are affected, it’s impossible for me to wash my hair, brush my teeth or button my own fly. Thank God leggings are back in style!
While it’s true that research and medicine have come a LONG LONG way over the past 5-10 years, they haven’t yet come far enough. I started trying various drug cocktails about five years ago now. From Methotrexate to Prednisone to Humira to Enbrel to Sulfasalazine to Naproxen to Vicodin to Celebrex and still no 100% relief?! Unbelievable. My current flavor of the week is a combination of Humira, Methotrexate and Sulfasalazine. Who knows what’s next? My doctor recently mentioned Orencia which is given through transfusions once a month. Sure, I’ll find the time to spend an entire day at the doctor’s office once a month between working all day and going to school in the evenings…
All of that being said, I’m starting to get the feeling that I’ve painted myself as an absolute pessimist between my last two blog entries. I promise you dear readers, that is not the case. In fact, it’s amazing what happens to people when God throws some obstacles in their way. Nothing is impossible! More on that later.