I Am the Face of Arthritis

Arthritis is not a sexy disease. It does not motivate people to do ice bucket challenges. It does not have an entire month where everyone wears “blue” and professional athletes don the signature color in their gear to promote awareness. Arthritis does not have celebrities “standing up” to raise funds and find a cure.

Arthritis is a disease that affects millions of people every day. It changes the lives of each patient in every way. It affects their families and their friends. Arthritis is most often “not looking sick”. But be assured if someone you know has Arthritis they are sick, very sick. And they don’t “look sick” because they have made every effort to appear that way.

Arthritis has no cure. There are over 100 types of Arthritis. Researchers are not even sure what causes someone to get Arthritis. Arthritis does not affect each patient in the same way. It is not a disease only old people have.

Arthritis sufferers include men and women, children and adults. Approximately 350 million people worldwide have arthritis. Nearly 40 million persons in the United States are affected by arthritis, including over a quarter million children!

More than 21 million Americans have osteoarthritis. Approximately 2.1 million Americans suffer from rheumatoid arthritis. More than half of those with arthritis are under 65 years of age. Nearly 60% of Americans with arthritis are women.

I am a 41 year old wife, mother and friend. I Am the Face of Arthritis.

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The Show Must Go On

My blogging is sporadic at best. I let life get in the way most of the time. But that’s what happens, isn’t it? Life happens regardless of what plans we make, how we feel, what we do.

I’ve spent the last few months immersed in musical theatre with my son. He landed the lead role in a local production of Captain Louie, Jr. I’m so very excited for him. He’s shouldering a big part with big responsibility. But he lives to sing and perform. He once told me that when he is performing, he happiest. He’s at peace with everything around him. Profound for a 12 year old.

This role has led to some cool opportunities for the kiddo. He went to Atlanta with a group from the production to the Junior Theatre Festival. JTF is the coolest environment I’ve ever been a part of. So much positive. So much excitement. So much support. JTF leads to a possible trip to NYC for him this summer for acting workshops. Plus, there is that whole SDACDA honor choir thing. In Florida.

Did I mention we are trying to sell our house and relocate?

All of these amazing opportunities require parental supervision. I’m happy to go. I’m extremely proud of my son. Not because of what he is doing but because of who he is. But some of this is difficult when you’re “healthy”. Doing it disabled is a whole different beast. I have absolutely no problem asking for appropriate accommodations. I’ve been fortunate that the other parents have been helpful and understanding. I’m blessed beyond measure that my son does everything he can to help me. I couldn’t ask for anything more.

But disabled or not, the show must go on. So bring up the lights and cue the music. It’s show time!

Is It the R&R or the Remicade?

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The last three weeks or so, I’ve felt almost normal. It frightens me.

I got my Remicade Infusion three weeks ago. 3 days post infusion, my family loaded up and we took a road trip to
Florida. We made the drive down in 2 days, stopping when necessary to eat, stretch and loosen up. We did the overnight stay a few hours in and took a route we know well.

We spent 3 nights at Universal Studios. We opted to stay in one of the resorts and had a great time. I’m totally impressed with how they handled my accessibility needs. I used my wheelchair to get around the parks and used my cane when I was not in the chair. This meant I was able to stay in the parks all day long and enjoy all the rides. I highly recommend the Harry Potter section of Islands of Adventure.

When we checked out we went off to stay with friends. We enjoyed time at the beach and on the couch just doing nothing. When we headed back north, we came through South Carolina to see some family. It was a great trip.

I did take 4mg of methylprednisolone each day of vacation. I stopped taking them on our last travel day. Did I forget to mention steroids tend to make me think I’m Wonder Woman.

We’ve been home two weeks now. Given the cold weather that has settled in here, I’m thinking we should’ve stayed in Florida. But I still feel good. I still feel almost normal. Other than the crazy fatigue that goes along with having an autoimmune disease, I’ve managed to keep the swelling, pain and joint problems away.

Is it the Remicade (and steroids) or all the warm weather and R&R we got. I haven’t had any steroids in two weeks. My shoes all fit and I have not used my cane. But I’m waiting for the other shoe to drop. Is the good the result of treatments finally doing what they’re supposed to or the great weather and rest?

I’m going to enjoy this respite from assistive devices. I know they will come back to my regular day all too soon. This week it will be 45 degrees here. It will be 85 in Florida. I have a feeling that “feeling better” will be back to feeling arthritic all too soon.

A Stopover Hangover

Bracelets get you everywhere.

Bracelets get you everywhere.

After this weekend, I’ve concluded that my wheelchair might need all-terrain tires and a bicycle bell. Or one of those “cow catchers” like on the front of trains.

I spent the weekend with my awesome husband and son enjoying The Gentlemen of the Road Stopover tour in Troy, OH. A “Stopover” brings Mumford & Sons (along with a host of other bands) to small cities and towns around the world. The spirit of the project remains: a music festival that celebrates local people, food and culture, where everyone pitches in and everybody gets something back. Basically, eat the local food, drink the local drink, enjoy the local people and have fun. Oh, and there is always great music.

First off, much love and many thanks to my awesome husband. Music festivals are not really his cup of tea. But because I love them, he goes full speed with me and never misses a beat. And, because he loves me, he makes sure I behave myself. These days though “behaving myself” has a different meaning. Instead of making sure I’m not stage diving and crowd surfing he makes sure I’m using my wheelchair and drinking plenty of water and taking my meds on schedule.

Second, hugs and love to my kiddo. I thought taking an almost 12 year old to this thing made me a bad parent. Turns out, it does not. He got to experience great music in a good environment (we were able to control what he saw and explain things as needed). I also got to have a proud mom moment when two lovely ladies sought us out to tell us what a great kid he is. I always worry if we are “doing it right”. Well, we might not be doing it right be we are definitely doing ok. Bub even helped with the wheelchair pushing and making sure I was ok at all times. He is a pretty great kid.

This weekend took some planning. I learned a few things in the process. Being “sick” means I have to do things differently. I used my wheelchair almost exclusively. But doing so meant I had the energy to enjoy the local town and sit through 14 plus hours of music. I had to let down that “I can do it, I’ll be fine” wall and accept my limitations. Accepting those limits made all the difference.

“I will learn to love the skies I’m under” is tattooed on my right shoulder. It’s a line from the song “Hopeless Wanderer”. Sometimes my skies are stormy, sometimes they are blue. I’m learning to accept my limits and live the life I’ve been blessed with.

If anyone needs me this week, I’ll be on the couch, recovering. Instead of the usual hangover symptoms of headache, nausea, etc, my “stopover hangover” is swollen joints, achy muscles and a pleasant fatigue from knowing I enjoyed life, arthritis and all!

I Am the Face of Arthritis

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This is what arthritis looks like.

It’s going for regularly scheduled infusions and lab work in hopes the medication will help you feel better.

It’s IV tubes and needle sticks, x-rays and MRIs, frustration and confusion, wheelchairs and canes.

It’s laughing with the nurses because its all you can do.

This is what arthritis looks like.

It’s a mom smiling through the pain during the biggest performance of her sons life.

It’s a woman trying to figure out what to wear that will hide the swollen joints and be easy to get on and off.

It’s a wife trying to be everything her husband thinks she is (and feeling like she’s failing miserably).

This is what arthritis looks like.

It’s a beer with friends because they love you anyway.

It’s going out even though its easier to stay in.

It’s taking control and being determined to live life to fullest, despite the pain.

I am the face of arthritis. And this is what arthritis really looks like.

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The Blue Ribbon Project

A Gypsy Looks at 40

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“Let me look into my crystal ball.”

OK, so I’m not really a gypsy.  I’d like to be.  The crystal ball could come in handy, maybe.

To quote Tolkien, “Not all those who wander are lost.”  I love to wander, but I am not lost.  It has taken 40 years to find myself and be comfortable in my skin.

I had my mid-life crisis years ago.  I wanted to get it out of the way quickly.  As I turn the page and begin to write Chapter 40 I do so with a content heart and clear mind. I have known loss, pain, fear and fright.  I stared my demons in the eye and told them to kiss my ass as I walked away.  I have survived more in these 40 years than some endure in a lifetime.  And I have loved every moment.

With every loss I gained strength.  Both in myself and in those around me.  Every painful memory left a scar that helps me tell my story and offers a permanent souvenir of where I have been, and a compass for where I am going.  With each fear I overcame I learned to trust myself.  That was a very hard thing to do.  I am strong.  I can handle anything that comes my way.

These last 17 years I have been blessed with a husband who should be nominated for Sainthood. He has taught me so many things.  Most importantly, he showed me love.  11 of these years have been blessed with a son that amazes me every single day.

In these 40 years I’ve learned that I am fearfully and wonderfully made by a God of love that knows no bounds.  And that I am not broken.  I might be cracked and stiff, but I am strong.  “I can do all things through Him who gives me strength. ” -Phil. 4:12

I also developed a few rules along the way:

  1. Never anger a redhead (even if she is not a “natural” redhead).
  2. Do not come between a woman and her coffee.
  3. Sometimes it’s better to ask forgiveness than permission.
  4. Life is too short for bullshit.
  5. Family doesn’t always mean you share DNA.
  6. Quality always beats quantity.
  7. Always choose the adventure (unless it involves taking the stairs up the Eiffel Tower).
  8. Never take anything for granted.

As I write the rest of my story I pray it is filled with 40 more years of laughter, love, chaos and adventure.  Not every adventure has to require a passport (but it helps).  Some days the adventure might be exotic, like a trip to Central America.  Other days the adventure might be maneuvering my wheelchair through the mall.  Breathing is an adventure these days, embrace it!

There are no great words of wisdom in this post.  And I really don’t want to look into the crystal ball.  I don’t want to know what is coming at me.  Surprises are part of the fun.  These are just the words of a woman/wife/mother/friend/gypsy/bohemian princess.  If 40 is the new 20, then I figure, I’m just getting started!

All that is gold does not glitter,

Not all those who wander are lost;

The old that is strong does not wither,

Deep roots are not reached by the frost.

Reflections on a New Year

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At midnight this New Year’s Eve I will kiss my amazing husband and wish my friends a happy new year. But what does that really mean? “Happy New Year”?

2013 holds many mysteries. Family life, faith, medical treatments; life in general is a mystery. My son will become a Boy Scout in February and go to middle school in the fall. Oh the mystery of the tween years. So many new things to experience.

A happy new year for me will mean being able to experience all things to their fullest. It might require more planning than I like. I have always loved the “fly-by-the-hem-of-my-skirt” lifestyle. But planning is the curse of autoimmune illness. You have to learn your limits everyday (because they change with each new day). You have to be sure you don’t borrow too much from tomorrow so you can enjoy today. When you do, it means days of recuperating. Days better spent enjoying life.

I walk by faith knowing that my arthritis serves a higher purpose. I don’t pretend to know what that purpose is. And I do not question it. I see the good things being “sick” has brought. Yes, I said good things. Being sick has made me a better mom (most of the time). Wong sick made me focus on what is truly important instead of what society says is important. Being sick has given me opportunities to do things I would not have done.

I don’t make New Year’s resolutions. Less room for failure. But I do reflect and make notes on things that could be changed in my world. I hope that when I reflect on 2013, I find that arthritis did not define me, but refined me.

Happy New Year!

Pole Dancing

First off, let me put it put there that I am NOT a stripper. No danger of that ever happening for a number of reasons.

However, I have learned how to work a pole; the pole currently holding the IV medication that makes it a little easier to fulfill my obligations in this thing called life. The big bag holds saline to keep me hydrated and flush the lines. The smaller bag holds the magic…Remicade. The magic that will make the next eight weeks bearable for my family, friends, strangers I happen to run into and me.

Did you know that Remicade infusions are considered chemotherapy? I didn’t for a long time. I mean, cancer patients get chemo, not arthritis patients. Surprise, it’s the same thing! And the medicine dripping into my veins from this pole makes my life manageable. I still need help chopping veggies and opening the water bottles. But I can walk mostly unaided and can sit through a recital. That means that the three hours I spend dancing with this IV pole every eight weeks is totally worth it.

So today I’m pole dancing with Christmas carols in my ears and thankfulness in my heart. I’m thankful that I have some medication to help; that I have medical insurance to help; that I have a husband and son that understand; and mostly thankful for a God that is using this thing called arthritis for a bigger purpose.