Thursday, January 30, 2014

Paula



Paula has always been in my life. She became part of the family before I was born when she married my uncle Poul. They met when he went to work for the U.S. Army in Germany after World War II, fell madly in love and married. Later, they lived all over the world, but by the time I was born, they’d moved back to Denmark.

It can’t have been easy for her. The Danes are not fond of Germans, what with having been occupied by Hitler’s forces during the war. To this day, we have issues with our neighbours south of the border. Paula was fluent in Danish, but did have German accent and I think she was always a bit of an outsider in the family. Denmark can be insular and not only was she foreign, but she was also different in many other ways. She was smart, she played the piano really well and she had a complicated history. Living, as they did, in a fairly uncomplicated small town, this was enough to set her apart.

I learned about shades of grey from Paula. History tells us that many Germans joined the Nazi party in the 1930s and you get a sense of an entire country of citizens believing in this terrible philosophy. Paula told us that her dad was a member of the Nazi party. Not because he believed in its tenets — nothing could be further from the truth. But he was a teacher and had a family to feed. Membership in the Nazi party was mandatory or he would have lost his job. So he did what he had to do for his family.

Paula also taught me that the war was devastating for the average German person. Her brother was a soldier and died in Italy and she twice lost everything. She became a refugee and left with nothing but the clothes on her back and her baby daughter in a pram. For a while, they lived on a farm where she was worked hard and survived on nothing but potatoes. Later, after the war, she worked for the Americans and that’s where she met Poul.

Paula loved children. Her daughter was grown and lived in Germany and not being able to lavish her love on her grandchildren every day, she did the next best thing. She worked in a kindergarten where she was much adored. She was also an excellent cook and this did endear her to the family — we are very food-oriented.

My grandmother used to host the annual Christmas dinner for the extended family, but when it became too much for her, my mother and her three siblings took turns. I always looked forward to when it was Poul and Paula’s turn for two reasons. One was that they had a fireplace and being a latent pyromaniac, I very much enjoyed spending time by the fire, feeding it whatever flammable objects I could find. The second was the meal, which was different than the usual pork roast with crackling. Poul worked for the US Embassy and traveled extensively, including going to US bases in Greenland. He’d pick up a reindeer roast and Paula would cook it to perfection.

Yes. We ate Rudolph.

I’ve always liked Paula a lot, but as a child I often didn’t understand what she said because of her accent. It didn’t matter, though. We knew we liked each other. When my juvenile arthritis started at age 4, I spent some time in isolation in the hospital because they thought I had rheumatic fever. I have very few memories from that time. I remember being in a white bed in a white room with bright light, behind a white door with a small window in it. And I remember my grandmother and Paula coming to visit me. Paula was wearing a fabulous fur hat and she ate my totally disgusting lunch, so I wouldn’t get in trouble for not eating it. That right there made her one of my favorite people!

About a year after we moved to Canada, Poul retired and he and Paula moved to Germany so she could be close to her daughter and grandchildren. In the early 80s, we visited them in Düren by the Eifel Mountains. We went for an outing to a nearby town, a very old place with lots of cobblestones. Very picturesque, but not accessible at all. I stayed in the car and Paula stayed with me and we had a conversation as adults for the first time. And I discovered that just as I’d suspected, I liked her very much, not just as my aunt, but as a person.

Paula was a strong woman and kept going as she aged. In the past several years, she’s had some health challenges, but it never seemed to stop her. Until recently, when they took over. Blessedly, she didn’t have to live through it long. She died quietly in her sleep last Friday at the age of 92. She had an amazing life, saw big changes in history — and felt some of them on her person — and she was loved by many.

I’ll miss her.
  

Wednesday, January 29, 2014

A Beginner's Guide to RA: How To Read a Study

My new post for HealthCentral deconstructs how to read a research article:

"How do you interpret a research study?

Staying informed about rheumatoid arthritis, treatments and other aspects of living with the disease is a big part of becoming empowered. Finding that information often involves learning more about RA research, even reading articles about studies in scholarly journals, such as The Journal of Rheumatology and Arthritis Care & Research. And this is where most laypeople hit a wall. Like all professions, scientific research has a jargon and s specific way of doing things that can seem unintelligible to the rest of us. But if you know a few tricks, you can make sense of it."

You can read the rest of the post here.

Monday, January 27, 2014

Brave New World of Awareness



A few weeks ago, I received an email from Kelly suggesting people in the RA community write blog posts on what rheumatoid awareness means to them, just in time for the February 2 Rheumatoid Awareness Day. 


More specifically, she asked “what difference do you think it would make if Rheumatoid Disease were recognized for what it is by everyone…?” And I immediately knew what I wanted to write. Settle in for a bit of speculative creative writing, starring our fictional protagonist, Margo.

Date: In the Future
Margo is sitting in her family doctor’s office, stunned and more than a bit anxious. Her doctor has just told her she suspects Margo may have rheumatoid arthritis and is now speaking to the secretary about arranging a referral to a rheumatologist. Fifteen minutes later, Margo leaves the clinic with information about her specialist appointment the following week. She was surprised things are moving so fast, but her doctor explained that RA is considered a “medical emergency” and they want to move fast. The next day, the rheumatologist’s assistant calls to arrange appointments for lab and imaging tests (ultrasound and MRI), so the results will be ready in time for her appointment.
She spends the next week fretting and reading websites about the disease. All her symptoms fit the classic picture of RA — morning stiffness, fatigue, pain and swelling, but they come and go. She finds it interesting that all the websites mention that RA presents differently in different people, but is reassured that the field of rheumatology is aware of the varying symptoms. 

The next week, Margo makes her way to the Central Rheumatology Clinic to meet her new rheumatologist, a kind, middle-aged man named Dr. Knowsalot. He listens to Margo’s story of her fluctuating symptoms and takes his time examining her. Margo feels safe and in good hands. Despite having only minimal symptoms, Dr. Knowsalot confirms that his assessment of her symptoms and examination, coupled with the results of blood and imaging tests, points to her having RA. He explains that early, aggressive treatment of the disease gives her the best chance for going into remission. Thanks to this type of chronic illness now being treated as a medical emergency, the rates of remission have increased hugely since the old days of the 2010s. Back then, people often had to wait months, sometimes years, and see several different doctors before they got a diagnosis. The doctor explains that scientists are getting close to a cure, but until that happens it’s important to use medication to protect her from the damage RA can cause. Margo is glad to have an explanation for what is going on in her body and feels optimistic that she will feel better soon.

Dr. Knowsalot explains that he wants to protect not just her joints, but also all the other systems in the body that can be affected by the inflammation. Before she leaves his office, several other appointments are made for her. These include a rheumatology social worker, who will help her adjust emotionally to the new diagnosis and connect her to community resources that can be helpful for someone with RA. She also has an appointment with a preventative cardiologist to make sure that her heart is not affected and with an ophthalmologist to double check that her eyes are fine. She’ll also see the pain management specialist in the clinic, because, Dr. Knowsalot says it’s very important to treat her pain to make sure that she has optimal quality of life. He also gives her a card with the phone number to the office and his email address and encourages her to contact him between appointments if she has any questions.

Margo walks out to her car in a daze. One she’s inside, she looks through the cheerful yellow folder she got at the clinic. In it are printouts of her appointments with the other health professionals associated with the clinic, as well as pamphlets covering almost all the questions that were whirling around in her head. She also notices a page of resources, including webpages and blogs in the RA online community, books about living well with RA and many other resources. She already feels part of a community and is surprised that despite just been diagnosed with a chronic illness, she feels certain she can handle it. Must be because there’s so much information and support about her disease, she thinks.

Before she drives home, Margo calls her boyfriend Peter to give him the news. He’s been working with her on research before the appointment and isn’t too surprised at the diagnosis. He’s perfectly supportive and tells her they’ll get through it together. Margo also gives him the contact information for another rheumatology social worker, explaining that Dr. Knowsalot is recommended that her partner also receive some counseling. “Chronic illness can be hard on relationships,” he’d explained, “it’s best to deal with the issues right away so you can work together as a team.”

The next morning at work, Margo pops in to see her boss, Karen, to explain why she’s had to be away for several days. “RA…” Karen says, “isn’t that an autoimmune disease?” Karen doesn’t know too many details, but she is aware that it’s a chronic illness that causes pain and fatigue. Margo isn’t surprised — after all, RA awareness is all over the media every February and everyone knows at least a little about the disease. Karen also offers to set up a meeting with the Accommodation Manager in the company to explore ways in which her employer can help her work more effectively, without unnecessarily draining her. She explains that accommodations are usually quite inexpensive. They often involve simple solutions, such as an ergonomic workstation, a lunchtime lie-down in the Quiet Room that employees use if they are not feeling well or need a breather from a stressful day. She also suggests setting up telecommuting, so Margo can work from home when she needs to conserve her energy.

At the end of the day, Margo sits down to dinner with her boyfriend. He asks her how she feels. “Really hopeful,” she says. “It feels so good to know that I have the support of not just you and my family, but everyone else, as well.”

This post is fiction. But maybe someday soon, it won’t be. Tell the world about RA.


Don't forget to enter the giveaway for a copy of Living with Juvenile Arthritis: A Parent's Guide by Kim P. Miller.
   

Friday, January 24, 2014

The Rollercoaster: A Guestpost by Kim P. Miller

Today is really special for me. I met Kim P Miller last year when I interviewed her about her book Living with Juvenile Arthritis: A Parent's Guide. We share a passion for raising awareness about juvenile arthritis, coming at it from different perspectives. I as an adult with JA, she is a parent of two boys who have JA. We stayed in touch and a few months ago, I wrote a guest post on her blog Living with Juvenile Arthritis. Today, I'm honored to host her on The Seated View. She's writing about the highs and lows of being a parent of a child with JA and giving away a copy of her truly excellent book. 


The act of parenting any child is a lot like a roller coaster. There are high points and low points, there are ups and downs, there are crazy twists and turns that you didn’t expect. You can guess what the ride might be like, looking at it from the outside, but you never really know what it is until you’ve actually gotten on and taken a spin. What it looks like from the line, may be nothing like what you thought it would be after you got on.

Being a parent of a child with Juvenile Arthritis is no different. Like any other parent, you don’t know what you are in for, until you are in it, neck deep.  You get on that same roller coaster, with its ups downs, but the chronic illness component makes this ride just a bit more terrifying, with just an extra twist. In my mind its a lot like riding Disney’s Space Mountain, you know it’s a roller coaster, but you can’t see what’s ahead of you, since the whole thing happens in the dark.

When someone asks me what is the worst thing about parenting a child with JA, or what is the biggest low, I have to say it’s the “being in the dark.”  There is no set protocol for every case of JA or related autoimmune disease. There are no guarantees that treatments will work for your child. There is no magic formula for taking away the pain, or making sure your child doesn’t suffer. There are just a lot of what ifs, and maybes. There are so many unknowns. Your child relies on you to make all the “right” decisions for them, but the trick is there are no “right” answers, and the stakes are very, very high.  Talk about pressure! For me, that was, and still is the biggest low, wanting to fix things, but not knowing if I can…not knowing if I am making the “right” decisions for the best possible outcome in my child’s life, or even worse, making the “wrong” decision for their care.

My personal low was making the wrong treatment decision. As always, the doctor put all the options out there for me, and I needed to make a choice. I went with her recommendation of the least “serious” medication with the fewest side effects and complications, even though my gut told me differently. I should have listened. My son developed a severe, life threatening allergic reaction to the drug- a drug that some others in our family were allergic to, but within a drug class that my son had previously had no issues. I made what I thought was the best possible decision, but it wasn’t the right choice for him. Nearly two weeks in the hospital and four months out of school had me beating myself up about that decision on a daily basis. This was definitely a low point.

But then things changed.

Just like a real rollercoaster, things started moving up, and going in a different direction. I started trusting my instincts and research, and after that incident,  the doctors started listening more. My son learned to speak up for himself and find HIS voice. We became more of a team, with me, my son, and the doctors all working together. Although the way up was slow, we were moving in the right direction, and that’s when it dawned on me: in order to be here, we had to come from there. Each piece, good or bad, fit together to get us where we are now, and where we are now has several high points.

Although I would never wish JA on any child, it has given my children gifts. Through experiencing some of the pain and sadness that comes with the disease, they have come to appreciate “good” times, pain-free times, and happy times far more than other “normal” children their age.  They have learned to make the most out of the times they are well, to seize the moment and not take much for granted, because they know that things can change in an instant. Because they have lived through the lows, they also know that there can be, and there will be another high point around the corner. Sometimes, you just have to be patient and wait for it.

Most people don’t truly understand this until middle-age, or a mid life crisis. JA has put my kids way ahead of the game. They know they can count on me, because I have been there, day in, day out, and any time of the night too. They don’t have to guess if I will be there when the chips are down, because we have been there and done that already. There is definitely a type of peace that goes along with that knowledge, and that peace is another gift.

People often ask me how I can say that having JA has been a good thing for my family. They wonder how I can find a high point in parenting children with such special needs. It’s not the disease I am grateful for (I would be happy to step off that ride) but the impact that having this disease has made on my children is another story. The way I have watched them, and us as a family overcome these challenges has been amazing. Much like the phoenix rises out of the ashes, JA has been the fire allowing them to come out on the other side stronger and more beautiful than ever before. Being able to witness this transformation, and seeing that all they have gone through is not pointless, that is my greatest “high point.”

Parenting isn’t easy, and parenting a child with any type of special needs is even tougher. We may be on the super-coaster instead of the kiddie version,  but that doesn’t mean we can’t hang on tight and still enjoy the ride armed with the knowledge that every “down”  is eventually followed by an “up”. 

To enter the giveaway for a copy of Kim's book, Living with Juvenile Arthritis: A Parent's Guide, leave a comment below by midnight ET on Thursday, January 30, 2014. Winner will be announced on January 31.

   



Thursday, January 23, 2014

Help Me Stay Healthy – Stay Home



It’s flu season — do you know where your germs are? I’ll tell you where they are: over here, making me sick!

The Ontario Medical Association recently released a statement encouraging people to stay home when they’re sick and asking employers to not require doctor’s notes:

Employers should encourage workers to stay home when sick - not require sick notes which has a discouraging effect and forces patients into the doctor’s office when they are sick, which only encourages the spread of germs to those in the waiting room, who in some cases are more vulnerable.

Thank you very much OMA for this moment of sanity!

I am one of the people who is more vulnerable. I take immunosuppressants for my RA. This combination of RA and the Biologics medication make you vigilant to the point of paranoia. You`re on the tail end of a cold? I don’t want to see you. You had the runs this morning and are pretty sure it was the Indian food from yesterday? I don’t want to see you. Your child has a runny nose? I don’t want to see you. Two people in your office are out with the flu? I don’t want to see you.

People don’t get this. It takes forever to train your family and friends to stay away if they or anyone around them are sick. Many even get offended when you cancel yet again because you don’t want to catch their cold. But there’s a very good reason for my “silliness.”

There’s no such thing as “just a cold” when you have an autoimmune disease and are on an immunosuppressant. This combo means I am more likely to catch anything contagious or develop infections. It also means that should I get sick, the consequences are much more severe for me than for the average healthy adult. Your cold might last a week to 10 days, make you feel kind of crappy but not slow you down too much. If I get a cold, I’m out for at least three weeks, maybe a few months, my RA may flare and I could develop pneumonia.

In other words: your germs could destroy my life for months. So please help keep me healthy. Stay away from me if you or anyone around you has been sick in the last week.

But why leave it there? Why not help others stay healthy, too?

Once upon a time in the 1990s, I worked in an office. One of the older admin assistants had a stellar attendance record. She’d had no sick days for a few decades. Lest you think she had an ironclad immune system, I should mention that she did catch colds and flus just like the rest of humanity. The only difference was that she didn’t call in sick. She came to work, no matter how sick she was, soldiering through being at death’s door.  Somehow, this accomplished her being seen as a role model for the rest of the office and the attendance program in general.

I was too young and too junior to opine loudly that the Emperor had no clothes (yes, of course I can connect this to a Danish fairy tale…). Because no one ever talked about how her coming to work while sick would inevitably set in motion a domino effect whereby the other 23 people in the office would catch the virus. And because this one woman refused to take one or two sick days, the rest of the staff would require 10-15 sick days.

One of the ongoing challenges of every organization out there is to manage absenteeism. To this end, it’s common to have absentee policies, whereby employees who call in sick too often find themselves in their manager’s office, having conversations and being monitored in the future. Some companies don’t have paid sick time at all. And in my obviously not-so-humble opinion, this is insane.

Going to work when you’re sick has two consequences. One, you’re sick longer because you’re not taking care of yourself. Two, have you ever seen Contagion? You pass the virus to easily half of the people in your office and as in my example above, one person dragging themselves to work when sick will cost another 10 sick days. This is not cost-effective. And it’s more than that. Because this one person passes the virus to the other people in the workplace, who pass it to their families, who pass it to their colleagues and friends and this is how half the country is prostrate with flu every winter! It's like that shampoo commercial, only with more tissues, coughing fits and death. Death? Yup. Because the flu can be deadly to people who are vulnerable, such as seniors and oh, yeah. People with compromised immune systems.

Isn’t it time we stop this madness? I have a few suggestions:

Take a broader look at absenteeism policies. Yes, it’s important that your employees come to work, but if the cost of that is that more employees call in sick, perhaps the policy isn’t working.

Less focus on employees physically being at work. Whenever possible, telecommuting should be available. Join the 21st century! Encourage your employees to work from home unless there’s an important reason for them to be at the office. There are a gazillion studies that show working from home can make you more productive. It can also be a real benefit for people who aren’t feeling well, whose children are sick or who have other obligations that need their attention.

For those people who can’t telecommute — attendants, mechanics, factory workers, doctors, firefighters — provide masks and encourage use of them.

Set up regional offices for doctor’s notes. As one of the commenters on this news story suggested, they should be paid for by employers that require said doctor’s notes. Sharing the expense would make it less costly for individual companies, while relieving the strain on the healthcare system. Having central locations also keeps more people with colds and flus away from doctor’s offices, thus helping to curtail the spread of these seasonal viruses.

Maybe we’d all be healthier if we used the model of protecting people whose health is vulnerable to everyone.