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

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 one of my best friends (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 lessened. 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 for Mr. Peacock, but we sure had a good laugh.

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 this 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

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

Sunday, May 8, 2011

Happy Mother's Day!!


 

‎"When I stopped seeing my mother with the eyes of a child, I saw the woman who helped me give birth to myself." 
-Nancy Friday

To all of the amazing moms out there,



Thank you for working as hard as you do every hour of every day. Thank you for being mothers, doctors, teachers, coaches, therapists and friends all at the same time. Thank you for taking on the hardest and most important job there is. Thank you for raising your children to know right from wrong; to be helpful and good members of this society. The world is infinitely better because of you.


To my own amazing mom,


Happy, Happy Mother's Day! You will truly never know how much I love and treasure you. This past year has been the most trying one of my life and I could never have gotten through it without you. As always, you were there at every appointment and constantly on the other end of the line. I will never forget it. You've played all of those roles listed above and more (I should add in artist, editor, nurse, massage therapist, patient advocate, veterinarian, decorator and hairdresser) and I'm so lucky and proud to be your daughter. Thank you for everything...



                                       Love always,
                                       Maya



Saturday, May 7, 2011

It's May 7th! Happy World Spondylitis Day!!!!




Happy World Spondylitis Day!!!!

May 7th is a special day for the Spondylitis community and a big step toward greater worldwide recognition of a disease that affects more than 2.4 million people (that's more than the populations of San Francisco, Detroit, and Boston combined!). In case you missed it, please check out my April 14th post in honor of Spondylitis Awareness Month. It's filled with lots of great resources and arthritis-related websites. 

The Spondylitis Association of America is hosting its 2nd annual video awareness contest, an initiative aimed at spreading information about Spondylitis. Each entry should be up to three minutes in length, answering the question "What should people know about Spondylitis?" Entries must have Spondylitis as their focus and an educational value for the general public. The contest ends on May 30, 2011 and the winner will receive $1,000! The next four winners will receive amounts ranging from $50 to $300. The top 10 entries will qualify for a free one-year SAA membership and SAA promotional items. Here is the short video that won first place last year...



Appropriately, the next topic for Chronicbabe.com's bi-monthly blog carnival is "AWARENESS" which asks people to write an "awareness statement" about their specific disease. So here goes...


It's been a long road, but I've come to see Spondylitis as a vital part of the person I'm proud to be. This disease has been my greatest challenge and, at the same time, my greatest blessing. Therefore, it means the world when you truly care to learn about it. Please ask questions; learning helps to bridge the gap between the "healthy" and the "sick" and make me feel less alone. Often, a simple and sincere "How are you feeling today?" goes a very  long way. It's also crucial to understand the unpredictability that comes with an autoimmune disease like  Spondylitis. My symptoms (pain, stiffness, fatigue, etc.) can change from hour to hour and thus it can be nearly impossible to make definite plans. Please don't dwell on my limitations. Instead, look at the things I can still accomplish and the courage it takes to get through each day. More than anything, please know that it's the littlest "every day" things that can mean the most to someone living with pain...offering to carry a heavy bag, walking slower than normal...this subtle understanding means the world.


Love,
Maya

Tuesday, May 3, 2011

Giveaway Winner & Thoughts About My Walk!


The latest giveaway was particularly exciting for me not only because it prompted the most entries yet, but because the prize was a photograph from a talented artist and personal friend. It was also very interesting to see what photo people selected and why. The winner of the Jodi McKee Giveaway is...

Lynn!

Lynn chose the photograph pictured below. Coincidentally, she had one of the most beautiful responses:

"I would choose the fourth picture. It reminds me of my 13-year-old daughter who suffers from spondylitis. Her life is one beautiful and fragile day built up on another. She handles her arthritis with strength and grace and the stem in that picture makes me think of her---it looks so fragile yet it stands tall while carrying its burden. The background of hard, dark, buildings makes me realize the hardness of the life that surrounds her. Yet she seeks out the light and she shines!

My daughter's name is Grace and it couldn't be a better name for such a beautiful girl who is filled with grace both inside and out."

This giveaway reminded me about the power of art. Depending on the onlooker, one image can mean many different things. I love what you saw in this photo, Lynn. I hope you'll hang it as a reminder of your amazing daughter. She is so lucky to have you as her mother and as her supporter. Please e-mail me at mklaub@gmail.com with your mailing address and we'll get it over to you ASAP!


Secondly, I wanted to take a minute and write about my upcoming Arthritis Walk in New York City! In 12 days (on May 15th) I will be setting out on a 5K Walk with friends, family, and my awesome teammates by my side. While I'm very excited about that day, I'm also a bit anxious. 3.1 miles might seem like a breeze to some, but I haven't walked that much in well over a year. I'm thinking I may take a lightweight wheelchair along with me because, when my hips say "stop", there's no fighting that. This way, even if I can't keep walking, I can still cross the finish line. Plus, my wonderful boyfriend offered to push me the whole way if need be. My pain level has been very low lately (Thank God), so I'm just hoping it stays this way and I can reach this goal that I've had for so long.

I've been extremely moved by the outpouring of support from friends, family, classmates, and my amazing readers. It has honestly meant the world to me and I will be walking with all of you in mind. If anyone still wants to make a donation, my fundraising page will be open for a few more weeks. Please remember that even a dollar goes a long way in showing your support. and - donation or not - "good luck" messages are ALWAYS appreciated and deeply felt.

Love,
Maya