VALERIE VINE
41, Mother of two.
Her "checklist" is done: Now it’s time to give back.
Valerie Vine is a wife, mom of two, holds two undergraduate degrees and a master’s degree.
Having fought through her struggle of growing up with rheumatoid arthritis, she now feels she has to strength to help others do the same.
Valerie Vine remembers her childhood vividly.
Despite being diagnosed with rheumatoid arthritis (RA) at young age, the majority of her childhood memories are along the lines of normal.
Except, how she felt during these normal experiences of dance lessons, playing with friends, or going to school wouldn’t gauge as normal for most.
More often than not, Vine wasn’t aware of the difference between her and her peers. The constant, chronic pain in her joints is all she’s ever known.
There is one moment, however, that plays in her head often.
Valerie Vine (middle), 41, with her two sons Connor (left) 9 and Oliver (right), 5, at her master's degree ceremony at the U of C.
“I have this really strong memory, I couldn’t have been more than seven, of my mom coming into my bedroom and I was really upset,” says Vine.
“She sat on the side of my bed and asked me what was wrong and I simply said, ‘I don’t want to do this today. It was the only time I remember admitting as a child that I really didn’t want to go to the hospital and I remember her saying ‘I know, and I wish you didn’t have to go either.’”
At this point, by almost seven years of age, Vine had started getting gold injections, a form of disease-modifying anti-rheumatic drugs (DMARDs). At first, all she was taking for the pain was “plain, uncoated, white, gross-tasting Aspirin.”
Once she started getting injections of DMARDs, young Vine was making trips to the children’s hospital with her mother on a weekly basis.
These may not be common memories to have of one’s childhood, but Vine was brought up to accept her reality at a young age without the self-pity. Instead, she saw these trips as an opportunity to spend time with her mother.
“She tried to make it a little outing. When I had to get blood work and I despised the entire process, but I didn’t say anything, I just did it and toughed up. It’s how I was raised,” says Vine.
“I credit my mother for me having my condition under control now and understanding the responsibilities I have with my own body. She’s so intelligent, she always said the right thing.”
Acceptance to Anger
Now a mother of two herself, Vine understands more than ever the importance of instilling independence into her children, especially in the face of chronic conditions.
“Nowadays when rheumatologists see me or doctors see me they say, ‘wow, considering you’ve had an active disease for 37 years you’re in pretty good shape’,” says Vine. She says she “100 per cent credits her parents.”
“I started to go to the hospital on my own at 14 years old. My mom was a big proponent of me taking on a lot of the responsibility. I did all of the physiotherapy, I wore splints, I did exercises at home every day,” says Vine.
Looking back, she says it would’ve been easy for her parents to let her “skip the exercises” every once in awhile, but they didn’t. She says this dedication from her parents allowed her adopt the same sense of determination to challenge every controllable part of her disease that she could.
“If my parents had said, ‘It’s just arthritis,’ I would’ve been in a wheelchair by now,” she says.
"If my parents had
said, 'It's just arthritis,'
I would've been in a
wheelchair by now."
“I remember sitting at the kitchen table with a can of generic tomato soup doing exercises with my wrist. I still remember a lot of these little exercises or things that were engraved into my brain, like using your larger joints and not putting a lot of pressure on your smaller joints,” says Vine.
Whether it was the influence of her parents, or her natural sense of what she describes as being an “overachiever,” Vine refused to deny herself of having the experiences she desired as a child and teen.
“Ballet was my big thing, I don’t know how good I was at it but it didn’t matter, I loved dancing. At around 15 and 16 years old, looking back, my knees were the size of watermelons. I couldn’t straighten my elbows and some days I couldn’t even put my socks on because I couldn’t bend at the hip. I don’t know how I did it, but I did.”
Vine says her inability to gauge what a child without arthritis felt, in a sense, was a blessing.
“The way I look at it is, if another eight, ten, or 14 year-old, woke up with my body, they wouldn’t cope. I know they wouldn’t. They would scream in pain,” says Vine.
“But I had no baseline. My baseline was that. I didn’t know any differently, I still rode my bike, I was a brownie, I was a girl guide, I still wanted to get the most badges. That was me.”
Adopting her parent’s go-getter attitude at a young age, Vine says she she accepted her condition simply because she “didn’t know any different.” Then, she experienced an early remission, followed by an even more aggressive attack of the disease. Something Vine didn’t know could happen. When it did, she got “mad as hell.”
According to Statistics Canada, inconsistency is common. Reports confirm that “for most people the disease is chronic, with some active inflammation on an ongoing basis,” and the symptoms, such as pain, swelling, stiffness and fatigue, will “fluctuate.”
It was around 16 years old when Vine noticed aggressive swelling and pain in one of her knees.
Statistics Canada confirms these episodes as “flare ups,” which are “periods of acute exacerbations of the symptoms and can last anywhere from a few days to a few weeks.”
“I was told for the longest time that 80 per cent of childhood arthritis will go into remission. I thought, ‘great, I’m in that 80 per cent,’ I had no clue. When it [the flare up] happened, I officially got angry. Suddenly everything hurt and we had to get it under control again. It hit hard, started with my knee swelling and then everything was affected,” Vine says.
“I had to go back to the Children’s (hospital). I was just furious. For several years I was really mad. I couldn’t dance anymore. It felt more like an aggressive disease that time around.”
Although this particular episode was put into control after “about a year,” Vine was about to experience several obstacles, and not just physical ones.
By Veronica Pocza
Valerie Vine, 41, on growing up with rheumatoid arthritis.
Photo courtesy of Valerie Vine
A Tough Transition
Vine credits her parents for helping her become independent in managing her diagnosis of rheumatoid arthritis.
Vine says that the transition from the children’s hospital at 18, to finding her own rheumatologist and external sources of care and information was hard on her, not just physically. Vine believes the depression that she is currently experiencing, was triggered during these years of feeling lost and hopeless, regardless of her strong upbringing.
“At the children’s hospital, you’re so heavily monitored. They take such good care of you and it’s a holistic approach. Then all of a sudden at 18, which is still quite young, you’re expected to find a rheumatologist, find out what treatments you need and access them. It’s huge,” she says.
“I’m naturally diligent and I’m a conscientious person and it was hard for me. I can’t imagine what it is like for people who don’t naturally have that drive to make it happen.”
During this time, Vine may have been resilient to find treatment, but there are other conditions, aside from physical, that she didn’t know to expect.
At19, Vine attended a chronic pain workshop and learned that her constant fatigue wasn’t a result of her being “a lazy person.” This thought that had constantly forced her to push herself without her knowing it was a symptom of her arthritis.
“I had no idea. This is when I was floundering, out of the children’s care, not knowing much else about how the disease could be impacting me. I now am fully aware of my ‘arthritis tired.’ It’s a fatigue that sucks every last molecule of energy out of my body,” says Vine.
Vine knows that symptoms aside from the swelling and obvious pain can all be connected to RA.
Reports by The Arthritis Society confirm, “having other chronic conditions is common, such as back problems, high blood pressure, migraines, asthma, diabetes, heart disease, bowel disorders, urinary incontinence, ulcers, cancer and strokes.”
“It’s a cycle,” she says, “chronic pain leads to fatigue and fatigue leads to depression, which leads to fatigue, which leads to pain.”
Statistics Canada also confirms that fatigue is 100 per cent connected to RA, as “RA is a systemic disease, resulting in significant fatigue.”
Although her acknowledgement of her depression was a recent obstacle, Vine still receives constant encouragement from her parents. Despite initially feeling ashamed of her depression and hiding her troubles from her friends and family, Vine is seeing a psychiatrist and she’s “on it.”
“My mom actually used my arthritis as a good comparison, saying, ‘You have a specialist for your arthritis, you take medication for your arthritis, you go to treatment, do you apologize for your arthritis? Do you feel bad about having arthritis? Why do you feel that way about your depression then?’”
Vine now understands the importance of “shamelessly” prioritizing naps and rest to better preserve her mental and physical energy. She does, after all, have two children, 5 and 9 years old, to take care of.
In regards to her physical symptoms, Vine adopted a newer approach, which she still relies on to this day.
After experiencing episodic flare ups from initially leaving the children’s hospital until her mid-twenties, Vine eventually decided to start taking the newest class of drug for treating symptoms of RA, Biologic Response Modifiers (biologics).
As described by Healthline, the biologics are “genetically engineered to behave like natural immune system proteins.”
According to experts on Healthline, “DMARD, methotrexate, is often the first drug prescribed. A biologic drug may be prescribed if methotrexate fails to control symptoms adequately.”
This was the case for Vine, as she applied to begin the “15 to 20 thousand dollar per year” medication through her rheumatologist.
“My rheumatologist had to write up a history explaining all of the other medications I’ve tried and stated that I would be the ideal candidate,” she says.
Parent to Parent
Although having experienced her fair share of constant pain, to remission and aggressive flare-ups, Vine has been able to accomplish all of the things on what she calls her “life checklist.”
She’s earned two undergraduate degrees, traveled abroad, happily married, worked a career as a teacher, has two children and now has recently earned a master’s degree in education.
The biggest accomplishment, although Vine says each step (metaphorically and literally) in her life is a celebration in itself, for a female with RA is becoming a parent. Vine has done so naturally and through adoption.
Her collection of experiences in the process of becoming a parent, twice, help paint the picture for some of the unique conflicts a woman with RA can face during the plan for parenthood.
Now on the biologics, Vine had a process to consider and risks to take. Vine was slowly taken off of all of her prescribed combination medications and placed on a steroid common to treat symptoms of RA, Prednisone.
" I just wanted to be a mother."
Not only did Prednisone have physical side effects, such as a rounded face, there was also the chance that Vine wouldn’t respond to her previously prescribed medications after her pregnancy. However, she said “this didn’t matter,” she “just wanted to be a mother.”
“I would need a few years to wean myself off certain medications, get my blood work sent off to specialists to make sure I was safely off the meds,” says Vine of the lengthy process.
“It was supposed to take about a year, but it was about two years by the time I was fully off the medication and had gotten the green light to start trying.”
Exhausting on both the body and the mind, Vine admits it wasn’t a “fairy tale” situation.
After she had been off of everything for about a month and had finally gotten the okay to “start trying,” a flare up suddenly hit with vengeance. Every joint was inflamed, head to toe and she was unable to move.
Vine (left) with her husband Ken (right) in 2010.
“The pain was so bad that I had to quit work. I couldn’t eat. We were in a two storey and my husband bought a couch for the main floor so that if I could not get up or down the stairs that I had somewhere to sleep. Sometimes it wasn’t until the afternoon that I got down the stairs,” says Vine.
She calls this time her “living hell,” as in her years of RA she had never experienced that much pain, ever.
“I actually wanted to die. I was on morphine and it didn’t help. I really thought, for the first time ever, how could someone live like this. ‘How can you exist in this much pain?’ I thought. It was miserable,” she says.
Luckily, before Vine had decided to wean off the medications, she and her husband had already been researching the adoption route and were prepared to do so if the natural way didn’t work in their favour.
At the point of Vine being couch ridden and barely able to move, let alone conceive, she still wasn’t “ready” to consider adoption yet. Vine wanted to try a few other things first.
Enduring another frustrating experience, Vine attempted the fertility treatment of Intrauterine Insemination (IUI) and was unsuccessful three times.
“There was so much frustration and stress. It was pretty demoralizing. I remember thinking, this sucks, this is no fun, this isn’t how it’s supposed to roll...you know, your husband is not even in the room with you. Then of course, your mind wanders and you blame it all on your RA,” she says.
Although Vine was experiencing difficulty conceiving, it’s likely her RA wasn’t the direct culprit.
According to the Government of Canada, as many as one out of six couples experience issues conceiving, regardless of any known or unknown medical condition.
Vine's eldest son, Cameron (left) now 9, at 4 years old with her second child, then newly born Oliver (right), now 5.
Mary Anne Dunkin of The Arthritis Foundation of The United States reports that some studies show that women with RA “have fewer children than otherwise healthy women.” She notes this is likely a choice due to other limitations (such as mobility, strength, complications with medications) rather than the actual inability to conceive.
Vine had one last attempt in mind before deciding to give her body a rest and adopt. Vine had decided In vitro fertilization (IVF) was going to be “the” route.
"Your mind wanders and you blame every complication on your RA."
Apparently, nature had other plans.
“I think what helped me get pregnant the natural way is making the decision to do IVF, and the stress alone that was relieved from knowing I had decided to do the IVF probably helped me relax, then calm down my flare up. I somehow knew I was pregnant before we even attended the IVF information presentation. Sure enough, I was.”
Vine’s pregnancy was what she would describe as “enjoyable.”
“The disease was under control, I just enjoyed all that comes with being naturally pregnant. It wasn’t like when I got pregnant, that everything was amazing and I was in this new perfect body, but I just felt good in general. All the while I had this big, round, ‘Prednisone face,’ but I was just mentally good,” says Vine.
According to experts, experiencing calming symptoms is common, especially if the symptoms calm early in the pregnancy.
The study reports that if it is “a mild disease during the first trimester, the disease is likely to remain mild throughout pregnancy.”
In addition, if symptoms flare up early on, the report says they are likely to improve in the later trimesters.
Dunkin of The Arthritis Foundation also reports that “there are a number of theories why disease symptoms improve, including increased levels of anti-inflammatory cytokines and hormonal changes that occur during pregnancy. Researchers are continuing to study the phenomenon.”
Once giving birth to a perfectly healthy baby boy, Vine was then faced with the second phase of a tough decision regarding her medication.
“You can’t breastfeed on the biologics, but I also wanted to be back on them to control my symptoms and possible flare ups. I also really wanted to breastfeed. It was a tough call.”
After the first born, Vine knew two things. For one, she wasn’t done having children. She also knew she couldn’t do the natural birth again, now that she had a child to care for.
Making It Work
Vine adds that stress management is huge to maintaining overall health and avoiding flare-ups. Her two sons, now nine and five years of age, have “never seen her in a flare up.”
“I haven’t worked in 5 years, that’s huge. When you take out that stress of work, for anyone, whether they have arthritis or not, they are going to get healthier. You are taking away a huge stress factor. As a teacher, I was also exposed to less germs when I stopped teaching,” says Vine.
Once Vine stopped teaching, she felt she had reached the right point in her life to dedicate her energy to helping others with RA.
“I’ve accomplished everything on my ‘to-do list’ thus far. I didn’t feel like I had anything to give when I was still fighting. I wanted to get an education, career, get married, have kids, and I felt like I would’ve been a good role model at any age for this, but I didn’t have the strength or presence of mind to do it at any time during my fight,” says Vine.
Although there is no cure for RA, and Vine is technically “still fighting,” it is the acceptance of her condition that is leading her to help others reach the same point.
Vine began her role within The Arthritis Society as a facilitator for “A 101,” a public program about arthritis with general information and education about the conditions of the disease.
Vine has a teaching background, and recently a master’s degree. Liz Kehler, education manager and director of The Arthritis Society Alberta and Northwest Territories division, has Vine working with a mentor program, which is “right up her alley.”
Kehler adds that it is the “perfect setup” for Vine to come into as a volunteer, especially with her background in education.
“Most of our volunteers have arthritis themselves,” she says.
“People try different things and you have to try what works for you, that is part of our message too. Find all of your options and get as much information as you can. There is an individual treatment plan for everyone. You may have different symptoms and limitations than someone else who has the same type. People who have experienced this journey understand that,” says Kehler of Vine.
Valerie Vine, 41, on facing risks with her arthritis medication and pregnancy.
Valerie Vine, 41, on managing daily health while living with rheumatoid arthritis.
Parenting With Perserverance: The mini documentary about the challenges faced and lessons learned in Vine's decision to have children while living with RA.
Photo courtesy of Valerie Vine
Photo courtesy of Valerie Vine
Photo courtesy of Valerie Vine
Having taught workshops for The Arthritis Society, such as "Arthritis 101," Vine now volunteers to train other mentors.
Photo courtesy of Valerie Vine
Having gone to “hell and back” with the conditions of her disease, Vine has come out the other side and is determined to see what her new checklist will entail.
Now enduring the search of a new career, Vine may be on the right path to finding something that not only helps herself, but others who are about to embark on their own journey full of obstacles presented by the unique and unpredictable conditions of RA.
Although it didn't happen overnight, Vine would consider herself "reasonably adjusted" to her life with chronic pain.
She's had a career with arthritis, travelled with arthritis, gotten married with arthritis, given birth with arthritis and received an education with arthritis and is now helping others.
To read about a young woman who is about to enter her next few phases of life while adjusting to her struggles with arthritis, see Madeline Fuller's story.