Vicki Woodward hates those rheumatoid arthritis advertisements. You know, the ones with the creepy music serenading a spry woman in her early 50s who effortlessly lives an active lifestyle…
“They always have some RA person who is happy, thin, and gorgeous with a husband and children.” Vicki laughs. “Why are they trying to make RA gorgeous? That is not real life.”
For Vicki, life with rheumatoid arthritis has fallen a little short of the “gorgeous” standard set by pharma ads. It’s meant learning to accept new limitations, finding new ways to stay comfortable and fit, as well as becoming an active patient through research and asking lots of questions. Yet, despite the long and bumpy journey, Vicki says she is thankful for her diagnosis. Rheumatoid arthritis has given her the chance to discover life anew.
Discovery begins with, well, diagnosis.
Like many patients, Vicki noticed the symptoms of RA gradually over time. A former modern dancer, she really enjoyed walking for exercise and often took extended tours to admire her neighborhood. Eventually, however, Vicki’s feet started hurting badly, “I don’t usually pay attention to pain because I used to dance and learned to work through it, but it got so bad that I decided to go see the doctor.”
At first Vicki’s rheumatologist wasn’t sure how to diagnose her. She showed signs of both Lupus and RA and has family history of both. After more research and tests they landed on rheumatoid arthritis, despite Vicki’s very low test results, “I’m sero-negative. Which means I never show it in tests. But my inflammation is way up.”
Vicki learned that rheumatoid arthritis is a chronic, autoimmune condition in which the body’s immune system attacks the joints. These attacks create inflammation that results in swelling and stiff, painful joints. It can also soften the bone which results in stress fractures like those Vicki experienced. About 20% of RA patients are sero-negative.
Moving on (quite literally).
As a life-long lover of movement it was hard for Vicki to say goodbye to her daily walks. “A long time ago I used to be a modern dancer. I used to be really strong and moved around a lot. As I’ve grown older it has been kind of a surprise to me that I’m not capable of that anymore.”
Disappointed but not defeated, Vicki tried seeking out new activities that kept her active, but didn’t wear her down. That’s when she discovered deep water exercise. “When I get in that pool I feel like I’m in my 20s again.” Vicki muses. “In the pool there is no gravity and no pressure. It keeps me active, exercises all my muscles, and gets my heart rate up.”
She continues, “Water is also very soothing. Not only is it healthy to move around, but my frame of mind is better after I exercise in the pool. It helps my mind as well as my body.” Vicki confesses that swimming does make her a little tired, especially the next day, but she feels the benefits strongly outweigh any side effects she experiences, “I think about people who are house bound with pain who get very depressed. I’d encourage them to go if I could. Even though it’s painful to get there and get in; once you are in it’s a delight. I know I’m getting a good workout even though it doesn’t feel like it.”
[tweet_box design=”default”]”I’m thankful that I have rheumatoid arthritis because it’s humbled me…I have more compassion for people in pain.” – Vicki, #RA[/tweet_box]
Deep water exercise has also helped Vicki’s social life blossom. “I’ve made friends there too.” She laughs, “Sometimes I spend more time talking than exercising!” Being social is a big cornerstone of Vicki’s journey. She’s committed to reaching out as often as she can. “I talk on the phone with friends a lot and go to a woman’s bible study on Friday mornings, which is challenging because I get tired. But I love the women and the friendships I’ve developed.”
In addition to deep water exercise and socializing, Vicki has also rediscovered her favorite sedentary hobbies like reading and cooking. She loves finding things to do that cause little to no discomfort. “I have stacks and stacks of books that I’ve purchased at used book stores. I like to read nonfiction and in my old age I’ve discovered a love of history.”
When cooking, Vicki searches out new tools and techniques to make the experience less painful. “To help, I like to buy things that are pre-chopped like those pre-cut salad bags. It’s not about saving time as much as saving my hands. I’ve also been trying kitchen gadgets to see if they can take the place of something that’s more painful to use.”
Tired beyond tired and finding comfort in a more balanced life.
Living with RA is tough. For Vicki it’s meant pursuing new interests, but also learning how to better pace herself by allowing her body to rest when needed. She says retirement has really helped her focus on listening to what her body needs.
“I never thought I’d want to retire,” Vicki confesses. “But now I highly recommend retirement. Especially for those with RA.”
Vicki enjoys retirement because it’s enabled her to plan experiences based on how she knows her body will feel. “I’m able to say to myself, ‘this day I’m going to be active, so the next day I can rest.’ When I worked every day I was constantly active which made me tired beyond tired. Every ounce of energy was out of my body and I would just cry. The tiredness bothered me more than anything and there is no medication for that.”
Comfort is big for Vicki. She’s become an expert at adapting her environment to suit her needs – especially her bed. “I love my bed,” Vicki gushes. “I’ve got all these layers. I started with a gel layer and kept adding. I found special bubble things, interesting bed pads, Microfiber sheets that are so soft they feel like rose petals and two feather beds. It is SO comfortable.”
The bed has made all the difference to help Vicki rest and heal. “It was so painful I couldn’t move before. Now it feels so good to get in there. It enables me to get enough rest without the hurting.”
Becoming an active rheumatoid arthritis patient
Living a balanced life hasn’t stopped Vicki from learning about her condition and taking charge of her health. She is an active patient, which means she’s an involved and informed member of her own medical team.
The Agency for Healthcare Research and Quality says that people who are actively involved in their medical care stay healthier, recover quicker, and live longer. So it’s no surprise that Vicki advocates for awareness and being proactive. She shared the following tips for being an active RA patient with us:
- Read up on your condition.
“Read up a lot about what’s happening with your body so you understand. Don’t be afraid to read scientific articles even though they’re hard.”
- Ask lots of questions.
“Talk to your doctor. Ask questions even if you feel stupid. Doctors want you to know about your condition so don’t be afraid to ask for help (I still need to learn this one).
“I ask questions like: What causes this? Why do I need to take this particular med? How does it help? What are the side effects? What level of RA do I have? and so on. If you read up, you’ll be better prepared to understand your doctor’s answers.”
“If you don’t agree with something the doctor says or does, let them know. If you don’t want injections, just say that. If you want someone else to do it, tell them you prefer infusions. If you want only pills, let them know. If the pills make you sick, say something.
“You’d be surprised how quiet some people can be.”
- Learn how to read the research.
“Train and teach yourself to understand what is actually going on in the scientific and medical community.
“When I get lab results back I just Google them and start digging. I look for articles and studies that are scientific and research based. Johns Hopkins and Mayo Clinic are pretty good places to start. Don’t go for articles that share someone’s opinion on research. They might not have the same conclusion as the scientists. That’s why we get conflicting headlines.
“The end of the study will give you the results. Skip to that part if you don’t care about research methods (although that part can be important too). It’s also good to know how many people were in the study.
“Lastly, ask yourself: ‘Do I trust these conclusions?'”
- Join a forum or group to extend your learning.
“I belong to a group on the Vectra Test website. I get a daily summary of all the people talking. I like to read through all the things people are experiencing. That’s interesting to me and lets me know where I stand in the whole hierarchy of RA and what can happen. I’ve learned a lot through that site.”
- Come up with a plan and stick to it.
“I’m inspired to keep myself healthy. My goal is to exercise, take meds, and listen to what the doctor says with the goal of maintaining my current level of health with RA.”
Above all, Vicki says rheumatoid arthritis has taught her a lot about life, and even though she doesn’t quite live the glamorous lifestyle RA commercials would have you believe, she’s happy.
“I’m thankful that I have rheumatoid arthritis because it’s humbled me and slowed me down. I think I have more compassion for people in pain. If I was really strong and go go go I would probably be a little impatient with other people. Especially those who couldn’t keep up. Now I realize that I’m blessed. I don’t have it nearly as bad as it could be, but bad enough to understand.”