Thursday, May 26, 2011

A Suit That Fosters Empathy

I recently heard about an idea launched by Loughborough University's Ergonomics and Safety Research Institute (ESRI)With the support of health care professionals and patient case studies, researchers developed an "arthritis suit" aimed at fostering empathy for arthritis sufferers. The video below features Amalie, a 14 year old girl with juvenile idiopathic arthritis (JIA) whose movements are severely restricted by pain and stiffness. This specialized suit was brought into her classroom so that her classmates could experience the challenges Amalie faces every day.


I found one of Amalie's anecdotes to be especially poignant. At first, her classmate decided that the suit "wasn't so bad" until he was asked to consider what his chosen sport (gymnastics) would be like while wearing it. He decided it would be impossible, which was precisely the intended message. Overall, I think this suit is a good idea, but I do question how realistic its portrayal is. After all, pain is the main challenge for most people living with arthritis. No...I'm not saying the suit should simulate pain (that would probably be considered cruel and unusual punishment), but I do think that pain needs to be a central element in the discussion.

Click here to read another article explaining how this suit can simulate living with other forms of arthritis, including Osteoarthritis. Sheena Turner, a 62-year-old former nurse has had severe and widespread pain associated with osteoarthritis for 22 years.  Because of the pain, she was forced to quit work and was met with a lack of empathy from her fellow medical professionals. There was a succession of comments including: "For goodness sake, just take some paracetamol", "Most people your age have aches and pain", and "It's just your age". Thus, Sheena understand the importance of this suit. She explains, "I think this suit is a wonderful idea if it gives doctors and nurses a chance to try it." 

When my friends and family want to know what arthritis feels like, I've found it most helpful to compare my pain to "consistently having the flu." It's as if a light bulb goes off in their heads, followed by a rapid stream of emotions - sympathy, horror, confusion, disbelief. There's usually some follow-up question, such as "You mean you ALWAYS feel that way?" After all, how could someone who looks healthy be in that kind of pain? There are many things I can't do when I'm at my worst and each task really does take more energy than it would without pain. That's the beauty of this suit. Instead of just imagining the discomfort, it provides a unique window into life with arthritis. 

What do YOU think about the arthritis suit?
Love,
Maya

Tuesday, May 24, 2011

Spotlight On My Personal Hero: Rob Wolfinger!


I'm proud to say that Rob Wolfinger isn't only one of my greatest heroes, but he is also my family member. He is my aunt Rose's brother and, ever since I was a little girl, I remember connecting with him. Rob was diagnosed with Myotonic Muscular Dystrophy at age 15. Although he has lived the majority of his life with this progressive and debilitating disease, he hasn't let it affect him at his core. He is truly one of the strongest people I know.

Rob lives in Wisconsin, so unfortunately we haven't had much time together over the years. However, we write letters back and forth and his words never fail to brighten my week. If there is one overarching quality I will always associate with Rob, it is optimism. No matter what comes his way, he finds the beauty in things. He appreciates his surroundings, his opportunities, and most of all the people in his life. I love hearing from Rob and learning how he approaches the challenges set before him. Particularly last year - when I was battling depression and self-pity - his words helped me find tremendous strength. Rob's spirit and gratitude make me want to be better and to savor the small joys in life. His e-mails have been more important to me than he knows.

Enough from me. Now allow me to to introduce the amazing Rob...

What is your diagnosis? When were you first diagnosed and how old were you?

The diagnosis of Myotonic Dystrophy was made in the early 1980’s. It all began with a bike accident at the end of my freshman year in high school when I was 15 years old. I was jumping on a ramp with a cousin and a friend. As I rode up the road and hit the ramp, I went up high into the air. I came down face first onto the pavement. I severely cut my tongue and upper lip and needed more than one hundred stitches to reconstruct my tongue. The doctors thought it very odd that I was unable to release my hands from the handle bars to protect my face and buffer the fall, so I was sent to a neurologist.

At the initial evaluation appointment, the neurologist asked me to remember a series of words. I thought I did pretty well, but I actually forgot the words he gave me. One week later I went to a hospital for more tests. Following that, I went to University Hospital in Madison and had a muscle biopsy, where the diagnosis was confirmed.

What would you tell a person whose has been diagnosed with your condition and/or chronic illness in general?

Well, your life will change. That’s for sure. It may happen slowly or fast. I would say you should do anything you can while you can still do it, or you’ll be sorry later that you didn’t do it, or at least try it. Make sure you go to doctor appointments and find a doctor that you feel comfortable with. Make sure you get one that is familiar with Muscular Dystrophy and its many different types. Get one who knows what’s going on, including recent developments.

I went to a local pain clinic and had a doctor who gave me trigger point shots in my stomach. I don’t think it helped, but the associates showed me how to do Biofeedback. They used sound therapy meditation tapes which I liked and found very helpful. My favorite tape was the rain tape. I got so relaxed that it took effort to move. I would really recommend relaxation tapes. There are many good ones.

I tell myself that life is like a river. You have to go with the flow. Also, I try always to keep a positive attitude because it makes life easier. I think about the good things along with the bad things in my life. The yin yang symbol hangs in my room always. It’s a good thing to have around for meditation and keeping things in balance.

Please explain how your condition affects you.

Myotonic Dystrophy affects all muscles in your body. It starts with hands and later impacts the feet. In Myotonic Dystrophy the muscles cramp and won’t release. Pain is not present and is not a factor in this disease. If I ever have pain, the doctor said he could give me medication for the pain. I went to many doctors. All they said they could do is giving me pills for the pain. I’ve never taken pain pills. Thankfully, I don’t need them to function.

When it started I had trouble using my hands for things like opening doors, bottles, etc. As it has progressed over the last thirty years, I have more muscles involved. It became more and more difficult to walk as the muscles weakened, so I began to use a wheelchair at times. I have been unable to walk or stand on my own for several years and now always use the wheelchair. Since I am unable to use my arms and hands to move in a standard wheelchair, I got around by using my feet to propel myself.

I have been residing in a long term care facility for two years. At first it was very difficult to adjust to the idea of leaving home and being here. The first week I just stayed in bed and slept, mostly. The second week I began to eat in the lunch room and also started physical therapy. Now, I’m involved in many activities such as resident council, food council, Wii games, balloon volley ball, crafts, bingo, bowling, etc. Having a computer has allowed me to communicate with friends and family, which is great. I also enjoy playing computer games like Spider Solitaire, bowling, golf and checkers.

I do therapy in at 6:00 am because there are fewer people there. My physical therapy is no longer paid for by insurance, so I can only do it on my own when there is available equipment. The exercise is very important to me to keep my muscles strong and my mood up!

Last year, after a long wait and struggle with funding, I was able to get a motorized chair. I feel much more independent and comfortable in this chair. It’s also so much fun to get outside and explore the surroundings and meet people. I have found my favorite spot in a park near a river. It is so peaceful and quiet when I am there alone. I love it! The chair has allowed me to go places on my own; places I could never go in my other chair. Fortunately, in my city all of the buses have motorized lifts and handicapped areas to secure the chair safely. I went to a large shopping mall last summer by myself, even transferring buses in the process. I found that many of the people I encountered during the day were so nice, understanding and helpful. I really appreciate the independence that the chair gives me and what it allows me to do.

One of my physical therapists was so against my getting a motorized chair because he thought I would only use this chair, become lazy and discontinue my workouts, etc. I showed him that this was not the case. I used the braces, the other wheelchair for part of the day and worked hard on all the exercises that I had been doing. He was amazed and admitted that the chair was a great thing for me. He said all physical therapists hate motorized wheelchairs. At this point, I am no longer able to walk at all, even with the braces, so I am so happy to have this new freedom in my motorized chair. I still use the other chair at times to exercise my legs. I lift wall weights five days a week and ride a New Step bike three days a week with help of an aide who helps me get on and off the bike. I ride for about twenty minutes each session. This exercise is very important to maintain the muscle I still have. Some days it’s hard and not much fun, but it’s important. "Use the muscles or lose them" is what one therapist says.

The hardest thing to cope with is not being able to do the things I used to do, especially walking. It isn’t easy to rely upon others to do things for me, like dressing and cleaning. It’s hard at first to lose this independence, but you do get used to it. I have so many nice people who help me both here and in my family. I hope that one day I will be able to move back to my home and get whatever help I need there.

What are you most proud of?

I’m proud that I’m able to overcome the fear and obstacles to get out into the public on my own. I was afraid at first, but after I did it I found out that it was a lot of fun. I am proud that I was able to do this. I can’t wait to do something new.

Where do you get your strength?

I get my strength from my soul or heart. It’s inside. Also, it’s great to have people like Maya, my hero. She is going through so much pain and difficulty but keeps active and always tries to help others. She gave me a guardian angel that lives in my hat. I wear it every day. Keeps me going strong!


What are three things you couldn't live without?

Friends and family; my motorized chair; Staying active and independent.



If you could send one message to medical professionals around the world, what would it be?


Please hurry and find a cure that’s available at a cost to everyone. Try to understand our feelings and how hard we are trying.


Thank you so much Rob! You're truly amazing.
Love,
Maya

Sunday, May 22, 2011

Good News Galore!

This weekend has been filled with awesome news. First of all, my immediate family has increased by one furry member. Yesterday we welcomed a big, bouncing baby boy...our new 103 pound Bernese Mountain Dog rescue named Yukon. If you want an immediate image ...think Marley and Me. To give you an idea, he ate and digested his entire leash last night. I'll be writing more about him soon, but we couldn't be happier. There has been a Bernese-shaped hole in my heart since Riley passed away last year.

Secondly, John and I were just approved for a new apartment in White Plains, NY....together! We are both extremely excited, especially since our time together now is far too limited. Next year will be John's final year of medical school, so he needs to live near the hospital. It was also be my last year at Columbia University School of Social Work, so I'll be at my second internship 3 days a week (plus classes). John and I are both very passionate about our education and, while that's a positive thing overall, it hasn't left us with much free time together. Among other things, this move will allow us at least a few minutes together each day and a sense of normalcy. 

Since I ultimately want to work chronically ill children, I applied to several children's hospitals in Westchester and the Bronx. I found out a month ago that Columbia inexplicably placed me at a counseling center for male batterers. I was very upset (to say the least), mainly because it had nothing to do with my career goal. After lots of perseverance, I've finally secured an internship at Montefiore Children's Hospital in the East Bronx. Without traffic, this is only a 25 minute drive from our new home - what a relief! I'm so excited and it looks like I've finally started my career.




In terms of moving in with a significant other, the prospect always terrified me. It felt like a huge leap of faith; a situation that could turn sour quickly. I've heard people say "you'll just know when it's right" and, after three years with John, I now understand what they meant. At this point, we just want to share our days together. We want to return from a long day, eat dinner together, and fall asleep beside each other. Really, it's the simplest stuff that means the most.

We also agree that this is an important step before making the decision to get married. We are bound to learn a great deal about each other and, while I know in my heart that nothing will change, my fears relate mainly to my health. As it stands now, I have at least a few minutes before John arrives at my apartment to make my bed. I can wash the dishes that have accumulated and hang up the clothing that I didn't have the energy to pick up. I can scramble to put on a cute outfit or throw on some makeup, and then suddenly I don't feel sick. Chronic pain isn't glamorous and it's not a third roommate that I want. I want to hold onto the magic in my relationship, so I can't help but worry that my disease - when seen up close - might make me all too "real."          




And then I remember who my boyfriend is... and all of those worries fade away. For three years, John has been there through the ups and the downs. He has proven to be my best friend, a constant, calming presence, and a shoulder to cry on. He says I'm prettiest without a stitch of makeup on. He has helped me when I've been in too much pain to dress myself and wiped away tears from my swollen face. With unwavering certainty, he believes I'm the beautiful girl in the world (even after months on prednisone). More than anything, I'm so excited for this chapter that we're beginning together. I couldn't ask for more.

In one weekend, I've gotten a new home, a new job, and a new pup. Life is good.

Love,
Maya

Thursday, May 19, 2011

Always Remember To Celebrate


I believe I've finally become what I once dreaded..."a grown up" (cue Peter Pan's "I Won't Grow Up"). With adulthood comes new concerns and responsibilities. Suddenly life becomes very real, very fast and days start flying by. This phenomenon struck me today as I was flipping through some old family photos, reminiscing about family vacations, birthday parties, and moments with loved ones that are no longer here. It was a reminder about just how important it is to celebrate whenever we can, for whatever reason we may find.

The truth is, there are sad and difficult things that we'll all face in this world - it's just part of the deal. I believe this is particularly true for those coping with chronic illness. Chronic illness is forever; it's there every moment of every day and, between the doctor's appointments, the medication schedules, and time spent feeling "down and out" from symptoms, life can become quite regimented. If we're not careful, it can quickly take the fun out of living. Therefore, it's up to us to infuse happiness into our lives; to find reason for celebration and never let those occasions pass us by. Birthdays? Anniversaries? Sure, but those are obvious. How about toasting to the first spring flower? Or celebrating just because it's Tuesday?

What I've come to believe (especially this past year) is that fun is crucial and, without it, we're merely existing. Fun is what memories are made of. Fun with your family, fun with your friends, fun with yourself...it's all essential. When is the last time you've added fun onto your weekly schedule? I mean actually written it, with ink and everything. I don't care if you say you LOVE working...this doesn't count. What makes you truly and deeply happy? What gives you that warm, contented feeling; the feeling that you never want that moment to end? I had one of those days recently when my best friend (Miss Palmer) and her boyfriend Justin visited New York City. Palmer had heard about a new baby zebra at the Bronx Zoo and it didn't take much arm twisting to get me there!

I've had the Bronx Zoo on my mind for a while now, but I haven't felt up to that much walking for  over a year. When I was at my sickest, I remember daydreaming about what I'd enjoy once the pain was behind me. The zoo was right up there. Justin discovered a public express bus that takes you straight from Manhattan to the Zoo, so that was great. Also, the weather couldn't have been more perfect! It was warm enough to enjoy the sun on our faces, but cool enough so that the animals were still active. Our first wildlife encounter was a large hill dotted with baboons, each basking in the sunshine and snacking on grass. In front of the enclosure was a tremendous peacock - the first of many that day.

Not only did we get to see the adorable baby zebra that had prompted our adventure (with whom we fell in love), but we witnessed one of the funniest and most amazing mating rituals out there. We spotted a large male peacock who was proudly displaying his plumage and strutting back and forth (look behind us in the photo). It was clear that he had his eye on a nearby female, who quickly turned her gaze toward him. As she approached, his dance became more frenzied and elaborate. We couldn't believe our eyes, as he started running toward her and shaking his tail feathers. Who could resist this display of affection? Unfortunately, it seemed that his lady was more interested in Justin! She followed us about 50 yards before her suitor recognized defeat and lowered his feathers. A sad tale, but a truly remarkable sight to see.

This is what I'm talking about. Life is incredible when we take the time to really live it. The day was possible only because I was feeling well enough to walk nearly 4 miles! I honestly can't remember the last time that happened. Walking freely was reason enough to celebrate, but add in awesome friends, warm sunshine, and the exquisite beauty of the animals...what more could a girl ask for?

Have you celebrated lately? Have you scheduled some fun into your life? I'd love to hear all about it!

Love,
Maya

Wednesday, May 18, 2011

Sofft Shoes Giveaway! Win Any Pair Up To $150 In Value!!


A while back, I discovered an awesome website called BarkingDogShoes.com. The site was created by a woman named Kirsten who was diagnosed 11 years ago with Rheumatoid Arthritis. She writes, "This disease was not kind to my feet and quickly destroyed bone and cartilage requiring surgery. At the time I was a middle school Spanish teacher--there was no sitting down on that job! All my shoes felt too tight and pinched my toes. I had to find some new shoes but had no clue where to start...my goal with BarkingDogShoes.com is to help women find a shoe that not only looks good but feels good."

Kirsten often promotes Sofft shoes and, now that I've cultivated an online "family" (mostly women suffering from some form of arthritis), I know these shoes are the real deal. From what I hear, they're great-looking, comfortable, and a Godsend to women living with chronic pain. I've never owned them myself, but I've had my eye on some adorable summer styles.

I'm BEYOND excited to announce today's exclusive giveaway! 

Sofft shoes has generously offered a FREE PAIR OF SHOES to one lucky reader of Loving With Chronic Illness! The winner will be able choose any pair of shoes up to $150.00 in valueAnd it's easier than ever to enter! All you have to do is leave a comment on this post with a link to your favorite Sofft shoe style and tell me where you'd wear them if you win! Remember, the winner will be selected through an online randomizer to make it completely fair.

The majority of Sofft shoes fall under the $150.00 mark and I know all of the Spring 2011 styles are fair game. This giveaway will end at 11:59pm EST on June 1. Good luck, my lovely readers! 

Love,
Maya

Tuesday, May 17, 2011

NYC Arthritis Walk Completed (And A Grand Total)!



Sunday was the long-awaited New York City Arthritis Walk! I first wrote about it in my January post: "Walking for Arthritis & For Myself." It was my first 5K (3.1 miles) - a distance that would have been truly impossible for me just a few months ago. With support from my incredible family and friends, I'm proud to report that I completed all of it! Although it was raining, we had a blast!

Our team, "The NYC Sick Chick Club", came in 2nd place for fundraising and also won the T-shirt design contest (thanks to the beautiful designer, Ali Yuhas). I'm sending a tremendous thank you to everyone who helped us raise money for the Arthritis Foundation. Your support means more than you know and this money will go toward fighting a disease that effects nearly 46 million Americans. And now I'm proud to announce the GRAND TOTAL...

 My personal total: $1, 515.0

              Team total: $7, 845.00
In the past year, I've been impacted every day by arthritis. I've placed my life in the hands of medical professionals and experienced an entirely new level of pain. I've felt scared and, at times, I've even been hopeless. I've tried more medications than I care to remember and coped with a wide range of side effects. I've had countless medical appointments and received IV infusions every few weeks. I've cried, I've prayed, and I've learned to ask for help. I was forced to extend my masters program by a year. But perhaps worst of all, I've been completely unable to plan my days and missed out on time with my friends and family.

But I've finally found a medication that has changed my life. I can once again breathe deeply and walk freely. I have control over my days and can plan for my future. For all of these reasons and more, this walk was exceptionally important to me. I walked for the simple reason that I could. Sunday felt like a new beginning; as if I was putting the last year behind me with each step. I was walking for myself, for my readers, and for every "arthritis warrior" out there.




On the morning of the walk, John and I woke up to pouring rain. I was anxious and disappointed because - as anyone living with arthritis can tell you - rain can be like kryptonite. I worried about how it may impact my ability to walk and felt guilty that people were travelling from far and wide in bad weather. Everyone insisted on coming anyway...rain or shine.




















The walk started at 10am in Battery Park, a beautiful area at the southern tip of Manhattan. When John and I arrived, we found my friend Virginia who came all the way from Boston to walk with me...something I will never forget. Soon we spotted my friend Becky running toward us with a big smile and a camera in hand. I have her to thank for all of these awesome photos! Our team raised enough money to earn our own table at the walk (fancy huh?), so Jodi and the rest of my teammates were easy to find.  We then met up with my dad, my brother and my sister-in-law Erica. My mom and aunt were sad to have missed it, but Sunday was also the annual stationery show at the Javitz Center where they had to represent their amazing business, Someday Designs. Finally, my friend Jill and her boyfriend showed up to offer their support!


In the moments before the walk began, I basked in my surroundings and the people who were there for me; the same people who stuck by me during this painful year and throughout my entire life. I thought about all of my loved ones who wanted to be there, but couldn't. I felt my nerves settling and excitement taking over. I also had a profound sense of belonging. I was honored to walk among hundreds of incredible individuals, each one having been touched personally by arthritis. Whether they were patients, friends of patients, or family members, they all gave me strength. More than ever, I was proud to be fighting (and winning) this battle.

Love,
Maya