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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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.

facesofarthritis.org
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.

Parking Problems

Last Friday I got a parking ticket. At the grocery store.

I went to a school program to cheer on my son. I made an effort to look like I’m not “sick”. Fixed my hair, makeup, wore nice clothes. I sat on hard, metal folding chairs for the duration of the program so I was extremely uncomfortable by the end. I waddled out to my Jeep which was parked in a handicapped spot near the front doors. I looked at my parking tag hanging on my mirror and thought “I’ll just leave it since the store is not that far.”

I needed to run by the grocery store for what was probably the fourth time that week. It was early in the day so I parked in a handicapped spot and ran in for the four items I needed. I was probably there for 15 minutes at the most.

As I returned to my parking space there was a man putting something on my windshield. It didn’t register right at first what he was doing. I honestly thought he was putting some kind of flyer under the wiper. Then it hit me.

“Why are you giving me a parking ticket? My hang tag is right…” I stopped talking because there was no tag hanging from the mirror.

I found the tag in the door pocket where I keep it while driving. The tag swings around and is most annoying if left to hang while driving. Plus, it says “Remove Before Driving” right on the tag. The weird part is I don’t even remember taking it down.

The officer was cordial enough but said I sure didn’t look like I needed to park there. But if the tag is mine I could go over to the station and there would be a 50/50 chance they would let it go. I guess that’s what I get for making an effort to not look sick.

Fortunately and thankfully I took my paperwork and tag to the station and they let it go. But I was reminded that if the tag isn’t there, next time they won’t let me off. So now my tag is stuck in the windshield. I hate leaving it there all the time, but it’s not the first time I’ve forgotten to hang it up, so it’s there permanently now.

Funny, the day I got my first tag at the court house the lady that processed it said I sure didn’t look like I needed one. In fact she only gave me one tag instead of two. (You can have two tags here if you have multiple vehicles and don’t have a handicapped plate) This meant that whenever we needed to use my husband’s vehicle, I had to remember my tag or hoof it.

One of the first things my doctor told me when we were working on a diagnosis was to save steps wherever I could. Anything that kept me from tiring faster, or getting too stiff to move was fair to use.

The last big trip to the grocery store my husband went with me. 15 minutes into shopping I was waddling. By the time we finished our shopping, I was shuffling along slowly enough that people were giving me exasperated looks because I was holding up traffic in the grocery aisle.

I’ll admit vanity gets the better of me most of the time. If I’m going out anywhere, I try my best to look like I’m healthy. But sometimes I wonder why. If you don’t “look sick” people just assume you are faking or lazy.

I am not faking. I am not lazy. Yes, I am “too young to have arthritis” but it does not change the fact that I do indeed have this nasty autoimmune disease. It does not change the fact that sometimes the steps I save by parking in a handicapped space means being able to walk through the grocery store without shuffling.

Just because I don’t look sick does not mean I am not sick. Because, I most certainly am. I truly hate using any handicapped advantage. But if it means being a little less miserable, a little more pleasant to be around for my husband and son, then I will be using it to my advantage.

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Average Can Be Extraordinary

This has been a good week I suppose. I’m still vertical. I feel ok. Pain, stiffness, swelling has been at bay. (Translation, I can carry out my normal daily functions with only a little help).

Why write about a mundane, average week? Well, it’s been so long since I have had one that average is really quite extraordinary.

It sounds silly to most people to think that things like buttoning buttons, chopping onions, driving, and grocery shopping is extraordinary. But when it’s something you can’t do most of the time, it’s a pretty big deal. I like having enough strength in my hands to open the jar of spices by myself. I don’t like asking my almost 11 year old son to chop up the potatoes for dinner. (Though I’ll admit he’s really good in the kitchen).

I cherish the most mundane things these days; being able to put on my makeup without needing to rest, spending a day out shopping without having to use a wheelchair or cane; enjoying our small town Christmas parade.

The little things become a very big deal when they are the things that challenge you the most. And while I’ve always enjoyed a challenge, sometimes I can’t meet them head on anymore. So when I can, it makes my day a little brighter.

Some Days are Better Than Others

So today was rough. I’ve been feeling puny all week. My arthritis flared, PMS, the whole package of ick. Last week was good. Felt mostly fine and was able to move ok. I pulled off an excellent Thanksgiving for my family (if I do say so myself).

Such is life when you deal with chronic illness. Especially autoimmune disease. You never know from one day to the next what will happen. To quote Forrest Gump,

“Life is like a box of chocolates. You never know what you’re gonna get.”

Except instead of chocolates, I get meds and swollen, painful joints.

Chocolate would be better.