The Seated View

So I did mention the thing about playing catch up, didn't I? That includes a post that I'm particularly fond of. One of the things that's a big struggle when you get diagnosed with a chronic illness is getting used to taking medication : "Getting diagnosed with a chronic condition often means getting one or more prescriptions for medication. Whereas the diagnosis may have given you a sense of relief to have some answers, most of us reflexively balk at the thought of taking medication for the rest of our lives. We still want to see ourselves as healthy, and taking medication doesn’t seem like something “healthy” people do. How I learned to (almost) love my meds I’ve had severe juvenile idiopathic arthritis since I was four years old. I grew up at a time when there were no treatments for this condition. It’s why I started using a power wheelchair as a teenager. You’d think this would automatically make me pro-medication, but that wasn’t the case. I’ve d...

Eating a nutritious balanced diet helps you to be healthier, especially when your chronic illness is flaring. But when your chronic illness is flaring, you don't want to cook. It's a vicious circle. In my new post for Mango Health, I share tips for how to eat well when you don't feel like cooking : "Giving your body the best fuel possible is important, especially when living with chronic illness. The kind of good fuel that’s contained in a healthy balanced diet full of nutritious and tasty foods.  Well, that’s the ideal, anyway. The reality is that with the energy limitations that chronic conditions often impose, sometimes you have to make tough choices about where your efforts go. Occasionally that means shortcuts when it comes to food. Enter meals that are fast, processed, and ready-made, usually not known for being healthy or balanced. But it doesn’t have to be this way. Good nutritious food doesn’t have to be complicated. Here are some of the wa...

Writing helps me in it many different ways. When I'm writing regularly, my dreams are a little less weird. It also helps me organize my thoughts, work out how I feel about things when I'm confused, and it helps me cope with my chronic illnesses. And I'm not the only one — research shows that expressive writing is very beneficial for people with chronic illness and chronic pain. I share more about this on my new post for Mango Health : "I started journaling in my teens. My juvenile arthritis had exploded around that time, and I spent a lot of time in hospitals. I was lonely, raw with homesickness, and overwhelmed by everything about a very active state of inflammatory arthritis. So I started writing, and I never really stopped. Once I was out of the hospital and back among my peers, I was still feeling fairly lonely, with an extra dollop of teenage angst like a nuclear cherry on top. Writing in my journal helped me express how I felt, and in doing so, also...

Do you talk about your pain or do you keep it to yourself? so many people who live with chronic pain due the latter. And it's not always a good idea. In my new post for Mango Health, I write about why talking about your pain can be good for you : "It’s not considered polite to talk about pain. With the possible exception of your doctor, no one is thrilled if you bring up the fact that you are hurting. Many people simply don’t know how to respond to the unique qualities of each painful sensation as you experience them.  So we who live with chronic pain or other less understood symptoms, like insomnia, often learn to silence ourselves. When around others, we don’t wince or massage our aching body parts. We do our best to camouflage with makeup or a smile any signs that we are not feeling well. Silencing our pain has consequences And it has ripple effects. If you feel you can’t talk about your symptoms to the people closest to you, you start not talking about yo...

There are times where it can be a struggle to find hope when you with a chronic illness. In my new post for Mango Health, I share building blocks to nurturing a sense of hope : " “Hope is the thing with feathers That perches in the soul, And sings the tune without the words, And never stops at all” - Emily Dickinson There are times when having a chronic illness can feel like you are being held in a dark dungeon, somewhere in the bowels of a medieval castle. You’re not imprisoned by stones, bars, and rattling chains, but by unrelenting pain and fatigue.   Every night, you go to bed hoping that tomorrow will be better. Every morning, there is a split second when your heart lifts as you wake up … and then reality dashes all hope. The pain is still intense, and the fatigue still overwhelming as if you hadn’t slept at all. I started the year like this, clawing my way back from a holiday illness. I had to stop my rheumatoid arthritis medication for over a mont...

Chronic illness can seriously mess with your body image, leaving you feeling disconnected and far from attractive. In my new post for Mango Health I look at ways to get back to feeling bodacious : "Where did the vibrant old you go? The person who felt at home in her own skin, who laughed and danced and took initiative? Living with a chronic illness is like living with a voracious monster that eats everything in sight: your energy, physical ability, social life, self-worth. And in some ways most devastating of all, your belief in your own attractiveness. But just as chronic illness can take, it can also give you a unique opportunity to rebuild. To accept and love yourself even more than you did before and to become fully realized as a strong, confident person. Here are a few ways you can become bodacious. Save your sweats Ah, sweats. They have the comfort of pyjamas and let you leave the house without looking entirely indecent. But they also make you feel invisib...

One common New Year's resolution is to quit smoking. If you've made a promise to yourself and your family to kick the habit, my new post for Mango Health could be just  what you need to quit and quit for good: "I smoked my first cigarette at 17. It made me feel nauseated, so I’m not sure why I had a second one, but I did — and that was the start of my addiction.  I’ve since quit twice. The first time, I lasted four years before the siren song of nicotine lured me back. It took a long time before I gathered the courage to stop again. It wasn’t just that I was afraid to quit; I didn’t quit because, the truth is, I liked smoking. Let’s face it: if we didn’t like smoking, we wouldn’t waste money on a product that’s lit on fire and burned to a pile of ash multiple times a day." You can read the story of how I finally quit and four techniques that can help you stop smoking on the Mango Health blog.  

Chronic illness can impact your self-worth. In my new post for Mango Health , I write about how this happens and what you can do to build self-esteem: "Your body is supposed to work with you. More than that, it should do what you want, smoothly and efficiently following the electrical impulses from your brain. It is the one thing in which you can have total confidence; the one thing that will never abandon you. Except when you have a chronic illness or other medical condition. All of a sudden, your body is working against you, refusing to do what you want, and moving in a way that is anything but effortless. It is devastating. Instead of being able to rely on yourself, part of who you are abandons ship just when you need it most. It can feel like the ultimate betrayal. A sense of self-worth is based in your image of yourself. When that image becomes fractured and broken, so does your self-esteem. When your illness affects your ability to do your job, be there f...

"I’ve always been really bad at taking care of myself. My body might have had opinions about limits, but I was firmly of the belief that transcending them was just a matter of applying some elbow grease and willpower. Perhaps not surprisingly, my body regularly took revenge. I lost track of how many times it forced me to stay very still for a week or more, while it healed the damage caused by my stubbornness. But still I persisted…until a big flare of my rheumatoid arthritis . This flare made me so weak that I couldn’t do much more than just get through the day. Only after looking into the abyss did I begin to think about changing my approach. These days, I see my body as my best friend, rather than an obstacle. After all, my body gets me through each day, helping me to live my life to the best of my ability. And like any friend, it deserves care." Read the rest of the self-care post on the Mango Health blog .     

In my new post for Mango Health, I share what it's like to be scent-sensitive in as fragranced world and the what you can do to cope: "Today is cleaning day for my neighbor across the hall. As floor cleaner fumes snake their way under my front door, I have an early morning asthma reaction. Coughing, I turn on the fan to breathe easier before I head out for the day. Ah, fresh air is wonderful! That is, until I pass the laundry room vent and get hit with a blast of floral-scented steam from the dryers. At least I know my doctor’s office is safely scent-free. But when I go into the bathroom, I discover that it’s been sprayed with air freshener. The staff doesn’t seem to understand why this is a problem. I decide I don’t need the bathroom, after all. After my appointment, I head to the mall for a few quick purchases. The drugstore has no fragrance-free hair products, so I move on. This requires taking the elevator, which is located next to a bath and...

In my new post for Mango Health , I revisit the medical adventure and some of the factors that brought me to the ICU: "In early March, I got the flu. For the first five days, it was pretty miserable, but it was just the flu. And then things got interesting. The influenza went to town on my lungs, and because of my asthma – despite it being fairly mild – I developed pneumonia. This made it hard to breathe, and I was admitted to the hospital.  Within days, I was in the ICU and then on a ventilator in an induced coma. I no longer just had pneumonia. Now I had acquired respiratory distress syndrome. I came very, very close to not making it several times. By the end of it all, I’d also gone through an emergency tracheostomy, leaving behind a small scar at the base of my throat. Somehow, I survived."  I learned a lot from this experience, some of which is about preventing that happening again. You can read more on the Mango Health blog .

Well, hello brainfog! It's sort of ironic that a post about being tired was published just of the time when I was pretty tired and subsequently pretty forgetful. Because I forgot to post it here! Anyway! Say hello to my post about chronic fatigue for Mango Health in August. A bit late: "Ah, fatigue. My old friend. Well, that’s not exactly true — I’d prefer to kick it to the curb, but it sticks around like a leech, draining me of vitality. If you have a chronic illness, you know what I mean.  Even if you don’t, you’ve probably still experienced low energy levels at one point or another. Think back to the last time you were sick with the flu, for instance, and how exhausting it was to walk a few steps to the bathroom. That’s the kind of tired those of us with chronic fatigue experience every day. I have rheumatoid arthritis (RA) and fibromyalgia, both known for coming with a healthy dollop of fatigue. You might say that I have a double whammy of exhaustion....

In my July post for Mango Health, I wrote about four ways to cope with fibromyalgia pain: "I lived with the pain of rheumatoid arthritis (RA) for almost 40 years before I experienced fibromyalgia. Having had RA since I was a child, I’d created a variety of coping mechanisms to deal with pain. I was no stranger to pain, and even considered myself a bit of a chronic pain expert. When I started experiencing fibromyalgia, all of this went out the window. Although I’d known high pain levels for most of my life, it wasn’t until I got fibro that I began saying that pain was loud. This new pain was much like a fire alarm going off right next to my ear. Even the slightest pressure felt like pain. Once when the strap of my purse got caught between my leg and the armrest on my wheelchair, it felt as if I were being stabbed with a knife." You can read the rest of my posts on how to cope with Fibro pain on the Mango Health blog .  

How very apropos! I am taking a leave of undetermined time from my job at HealthCentral to allow my body to recover fully before I do the work thing. And this is when my new post for Mango Health on the work-life balance with chronic illness was published: "It’s only been two months since I was discharged from the hospital after what I call a “medical adventure,” which included a lengthy stay in the ICU . Recovery is taking a long time, and although my energy levels are much better than they were, I still run out of steam fairly quickly. Any energy I have goes toward work in order to pay the bills. Suffice to say, that elusive concept of work-life balance is even harder for me these days. Balance, Schmalance Balance isn’t just about meeting your obligations at work and with your loved ones. It’s also about creating a life that makes you happy. If you’re lucky enough to have a job you love (I do!), it can fill up the need for happiness for a long time. And then so...

My new post for Mango Health is about coping with the mortality risks of RA: "The first time I heard the term ‘mortality risks’ associated with rheumatoid arthritis (RA), I wanted to stick my head in the sand like the proverbial ostrich. If I can’t see it, it isn’t happening. Right? Although repression is my favorite coping strategy, it does absolutely nothing to deal with a very real phenomenon. When you live with rheumatoid arthritis, you have an increased risk of death. It’s called the ‘mortality gap’ , and it refers to the lower life expectancy that historically has affected people who have RA. That’s a really scary thing to read. Much of RA is already unnerving — inflammation, fatigue, pain, and the possibility of deformities in your joints. After living with this disease since I was four years old, I’d gotten used to that, though. But potentially dying because of it, and early? That would severely interfere with my plan to live to at least 100 years ol...

I was really excited when I was approached by Mango Health and they asked if I’d write some articles for them. Mango Health has created an app that helps you remember when to take your medication, and remind you of when renewals of your prescriptions are due (available in the US). Super helpful. They also have a blog with lots of informative articles about living with chronic illness. And that’s where I’m going to be appearing once a month through May. My first article is live now. “I am obsessed with light and water. These elements may be a natural part of everyday life, but I find myself continuously fixated on them, particularly when taking photographs: I have approximately a gazillion photos on my hard drive, and 67.4 percent contain images of light, water, and often, light upon water. Photography is my escape from stress and the chronic pain of rheumatoid arthritis and fibromyalgia. If the weather’s even halfway decent, I head outside, with my camera tucked...