Crooked feet and brown boots

Coming to the realization that RA changed my ability to wear certain shoes came with a swift kick in the rear for me. It's like one day I wore 3" heels and the next....bam....flats! And not just any flats, unflattering flats. Recently, I learned that my hips and knees were turning in and out (like an hourglass). Well, I didn't think anything of it again until yesterday. I stumbled into the great cornucopia of boot heaven looking to pick out the perfect pair of boots. I put on a pair and in order for my foot to go straight, my whole body almost has to be crooked. My husband stands there looking at me, while I am blubbering like an idiot about my crooked legs. We finally found some that allowed me to walk naturally and looked great too. Oh the joys of being a spoonie. 

Old fashioned Christmas

Christmastime.  A time that is supposed to bring joy, brings the realization that we as a people have lost the basic fundamentals of Christmas. In the old days, we read about children getting handmade items in their stocking. It was a much simpler time. Granted that was also the time when you worked from sun up to sun down, and school was optional! Each year you think it couldn't get any worse in the outside world, we see evidence that we are sadly mistaken. And if the holidays and crime rate isn't enough, we have our daily struggles that we as Spoonies deal with. Learning that the latest thing in fluid replacement for joints is still in its exploratory stages and may not be covered by insurance just yet...but that's where you're headed. Or learning that you either have to wear support hose 24/7, or have surgery on your veins. It sounds like the prognosis of an elderly woman, but the harsh reality is that I'm not. I'm not even in the 40-50 bracket. I say all of this to paint a bigger picture which is this:  "my story is more than pain". But this Christmas, circumstances have brought me back to the basics. Know your limits. Be ok with your choices. And always smile! 

Beauty is only skin deep

Beauty. In our age, we are defined by the world's definition of beauty. But as a spoonie our bodies change. Our insides are constantly fighting against itself, and our outward body is constantly, slowly deforming. We sacrifice every ounce of our being to help others just to feel needed and purposeful. Sometimes the sacrifice comes at a greater cost than some can ever imagine. In a typical life, one might give up an hour of their day to drive a friend to a dept store. That hour of a typical day doesn't mean much, but to a Spoonie every hour is carefully calculated to produce the best results. When our help is paid back with lies and deceit we find it more and more difficult to stay positive. The stress that is birthed from that situation causes a flare, and in turn the flare leads to swelling and joint deformations. The never-ending cycle of pain and suffering.  Things that some see as harmless can cause detrimental results to a Spoonie. It's bad enough that we are looked upon as being "outsiders" because we can't wear the latest and greatest fashion trends, but we can change the world one voice at a time. Find your voice, let the world know that you are beautiful, and stand firm on your two feet! 

Warriors

Warriors.  Strength, humbleness, humility, and selflessness...in my opinion are all traits of a true warrior.  Spoonies are way too often looked down upon as being lazy. No one realizes the battle that happens to us daily just to function as a "normal" humans. We fight to get a good night sleep, we fight to get out of bed, we fight to turn the knob of the bathroom just to get ready, the list goes on and on. What you take for granted, it is a true struggle for us. But then we see insurance companies pushing us to "get more active" and "get healthier" just so they don't have to pay as much for us on coverage. Do you they not realize that if asked, every one of us would gladly trade our bodies for a healthy one. I would love to be able  to run a marathon, or just RUN for that matter! Instead, I have to think about my hip, knees, and back that will hate me the next three days after! I've had time to come to terms with this way of life, and I have had time to learn my limits. And yes it SUCKS. Sixteen years is a long time to come to terms with the Spoonies life. We fight the hardest battle that you can fight every day...the fight against our own body. The true warrior within, always hidden but never forgotten! 

Beauty through pain

It's so easy for someone with an autoimmune disease to fall into the never ending pain tailspin. Between the fibro-fog, morning stiffness, and extreme cold/heat sensitivity we are a huge ball of problems. Sometimes it's hard to see past the pain. Sometimes it's hard to ignore the migraine, the shooting pains in your joints, and just tape the smile to your face.  I read a quote the other day that I really liked. It made me think that maybe, just maybe, I wasn't in this alone. The quote said "Find the good and praise it". POSITIVITY. Spoonies in general have a hard time with looking on the sunnier side of situations, because most of the time, even the sunny side is still kinda shady. I guess constantly reminding ourselves what we are living for will always brighten our days. 

In the Bible Joseph was challenged tremendously. Many would say that his life was unfair today. But, we can learn a lot from him. He could have held a grudge and justified himself many times. Instead his reply was simple. “Don’t be afraid. Am I in the place of God? You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives." All in all, sometimes there is beauty in our suffering...

Twenties, thirties, and what's to come.

"I'm still in my prime..."  I like to think that our state of mind is what determines the state of our health.  While this may somewhat be true, there are steps that we need to take to help make that statement true.  The ability to fool our neighbors or coworkers into thinking that we are just "obese" or "lazy" is our ultimate goal. To mask the symptoms so well that we continually hear "you don't look sick" when the bad days come. Sometimes obesity isn't due to enjoying the delicious food choices that we are limited to. Most of the time, obesity is just one of the many side effects we try to manage. Instead of thinking of that our "prime" is dead and gone, maybe it is best to to stay that we reach our prime in stages. Yes, I know my twenties are gone, but the fact that I can still fool people into thinking that I AM twenty something has to count right?! Reminding ourselves that the daily struggles are real, but the breath in our bodies means that we are still able to reach our next goal. Goals, primes, weight, all things that may cause some pressure if they aren't met. But that's the great thing about setting your own goals, you have the ability to take it just one day at a time! 

The Hippo and the paper

Accountability. Since when did that term become a foreign concept?  In this day in age, we teach our children that it's ok to pass the buck and blame someone else for our laziness. Laziness, that can cost someone their health. Laziness that can cost someone their livihood. As a fellow spoonie, our fate lies in the hands of such people. And although the cost for stress is high flares, sometimes it means we have to make others understand that an "I'm sorry" isn't good enough. Like the old tale of the crumpled paper that was used and abused, no amount of ironing or finessing could ever make the paper like new. Instead it still looks and feels like a hippo sat on it.  But we as spoonies have to "keep calm or suffer the consequences". It's funny, we suffer consequences of not only our actions but of others as well. I wish there were more people like us who worked in the medical field. That way they understand how important it is to get medication on time.  If there were more people like us in the workforce we wouldn't have to explain why their incompetence has led to 3 days of flares because your medicine was late. But such is life, an auto-immune disease doesn't allow for one to work for very long. Perhaps, that is why we are so misunderstood.  

Wise words and a couple of fish

In this day in age we look to social media for entertainment, wisdom, and comfort. We often find that life is full of an over abundance of information. Anything you don't know can be "googled".  In fact, I've learned a lot about my disease from the web. I constantly am trying to keep myself educated about the latest studies and medications that are surfacing. But one thing I have done more and more this week has been to trust in God's promises. "Do not worry!" That's big for me. Today at work God in His own special way reminded me of that once more. My coworker told me this tale: "we've been going through a rough patch ever since my husband was laid off. So we took out a box of fish patties and on the box it says it had two patties in it. I told him to feed himself and our grandson. I was more concerned about them eating than me. So my husband opens the pack and there were THREE PATTIES!  That was only the work of the Lord! He fed the five thousand the same way and he took care of me and my family!" Needless to say I cried. I tell this tale to remind myself that God has this in His hands. I am not to worry about my pain, health, or family. He will provide and sustain. 

Matthew 14:13-21

Blessed be. 

My Story...

Imagine your life at 19...you have unbearable pain in your hands.  The doctors run all kinds of tests, but nothing is conclusive.  Their diagnosis: Arthritis.  Their fix: 800 mg ibuprofen twice a day.  This went on for 7 years.  Seven long years...needless to say, this was not the proper diagnosis.  I insisted on more tests.  I finally got my answers.  It was a true struggle for doctors to believe me since I was the only one in my family with an RA diagnosis.  Now I am not only fighting to be heard, but my body is fighting itself.  I finally found a doctor who listens to me and doesn't make me feel like this disease is going to get the best of me.  Present day.  This disease has taken over my hands, hips, knees, and newly found... it has started to move to my back.  I am 35.  THIRTY FIVE and this has taken over most of my body.  No one understands how hard it is to live with this disease.  Except probably the people who share in my pain.  I tell this story to say this one thing "hope".  Hope that one day we will find a cure for this horrible disease.

Cactus in the middle of a desert

Brokenness, sadness, pain, suffering...emotions we fight every moment of every day just to keep our head above water. We fight back the tears that are always are on the verge of falling and drop the veil of happiness that everyone expects to see. In a world of entitlement and complacency, servitude has become a forgotten act. It's no longer normal to help a neighbor in a time of need. Instead we lock our doors and watch them suffer through the windows because we don't need to meddle or better yet "they could be crazy!" If there is one thing that this disease has taught me is that I am broken. But it's just a matter of time until this earthly body is no longer broken. So what is one to do? Join a support group? Start a support group ? Educate others about God's promise for our lives? Maybe! But in the meantime, I guess I need to adjust to MY new normal....I will let you know when I figure out what that is! One thing is certain, just as the cactus survives in harshest climate, we too can grab life by the horns and survive! Remember that we have our own means of survival inside of us....but every plant still needs sunlight to grow!

What doesn't kill you, does it really make you stronger?

Someone once told me "The ones who will hurt you the most is family". I never wanted to find truth in those words. I lived in denial. Truth is, that statement is very true and very real. The bad part, living with an autoimmune disease doesn't exactly allow you to have lots of stress in your life. You see stress is the number one trigger for flares. So, what is the solution for this very real problem if family is supposed to be your safe haven? I've yet to find the solution. Maybe happiness within yourself is the most important. 

Feeling pretty special

Life...trying to maintain the new normal is always the challenge. You find yourself forcing tasks and pushing your body to new limits. But at what cost? Secretly you know that you will pay for those extra spoons that you used today, tomorrow.  And just like the domino train, once the first domino falls, it starts the never ending cycle. So you just keep pushing until you can no longer stand it. But, the beauty in the pain is that it is not eternal as long as we have Jesus in our lives. You see when I think about his wounds, they were so much more than mine. His suffering was for me. And that feels pretty special. 

Pin cushions, walking canes, and the ruby slippers

Anyone who has an autoimmune disease has certainly felt like a human pin cushion at one point during their journey. You try to convince yourself that the injections help, but at what cost? Hair loss, swollen joints, backpacks filled with an assortment of braces just to go to the grocery store, and an emergency walking cane in the trunk. Yeah, life gets pretty real....real quick. But the worst part of it all is, needing help to do the most simplest of tasks, with no one around to help. Maybe one day the storm called life will one day land me in my own fairytale land. And just like Dorothy I too will earn my own ruby slippers. 

When the house of cards comes crashing down...

It always amazes me to see the wonderful castles made by only a deck of cards. Such precision, such handiwork, and most of all such perfection. But I have to wonder, how many times did it take to get that castle right? Did the master try more than once or was his hand so steady and accurate that he knew just how to place each and every card just right. In a world of imperfections, it's so easy to get caught up in our own failures and shortcomings. But, we have a master who knew us before we were born. A master who knew just where to place us and how much weight we can bear on our earthly bodies. Most importantly we have to learn to rely on eachother to be able to make such a great masterpiece. Knowing our identities as individuals and as a whole is key. 

Lobster claw lady and the circus side show...

I heard this short story come on my daughter's old iPod titled "To This Day". It talked about children being bullied over and over again from a young age and growing up just like the circus side show freaks. I cry every time I hear this story come on. Not because I was bullied but because I see my body changing. My hands are becoming more deformed as well as my legs. My harsh reality is that I will one day become one of those circus freaks that people in this cruel world stare at and laugh at. And although I can see the horrible changes happening to my body, I somehow am reminded that when I get to heaven I won't have to worry about my deformed hands or legs. I will have a new body. Yippee!! For all things are made new! This suffering is only for a minute, if only we can remember to keep our eyes focused on God's promises. 

Baseball games and once upon a time...

Facing new challenges isn't something that comes every once in a while with auto-immune disease. You literally have to be on point and on your game every moment of every day. Learning to listen to your body, speak up for your beliefs, and finding joy in the little victories are the most important things we as spoonie a have to face. At 35, I never imagined my life having so many challenges. I see couples my age still having kids, fighting for a career they so despartely desire, or even being a "super parents". Meanwhile I'm just trying to climb a flight of stairs without my knee swelling for 3 days. (Not joking). Then I think back to my twenties. My disease didn't progress as fast when I was going to baseball games, soccer games, softball games, building the fastest race car in cleveland lol. No, God gave me a chance to enjoy my children grow up and become young adults and then changed my whole world again. So if I took charge of life with such vigor and tenacity in my twenties, what is stopping me now from doing the same thing? 

When the light at the end of the tunnel needs to be replaced...

Becky used to say all of the time "I'm completely in the dark and my flashlight needs batteries!" Isn't that our luck...all of the time. I find it just as difficult for me, a person with an auto-immune disease, to live with a person who is typical (non auto-immune). Sure they empathize and help you when your in need, but can they really understand the pain your body endures just to be able to perform the simplest of tasks. Remembering my life before the disease, I was so blind! I wish I could have that "me" back. I could run, jump, play with my kids, sit, walk, clean, endure extreme temperatures, even wear cute high heel shoes. Now the highlight of my life is if my hands are working well enough to button jeans I feel like I'm a super star! But, all pales in comparison to the feeling I get when I say I can't do something or I don't feel like going somewhere because of my RA. The look of disappointment on my husband's face is just painful, even more painful than the disease itself. That's when I put on my fake at smile and say "ok I'm fine" and try to ignore my pain...all of it. 

I'm beginning to hate spoons...

I'm beginning to hate spoons...actually you can throw all forms of silverware into that mix too. Being a spoonie isn't what I saw for my life when I was 16. But, deciding what "chore " is more important to do now because later I won't have the strength or ability has become my gruesome reality. A simple touch can send radiating pain through my body, but how can you say no to experiencing life? I have to think that God has more in store than just pain. He wants to use my story. Pain and all. 

Janis Joplin and Deals Gap....goes together like peanut butter and jam!!

Escaping to the beauty of nature has been my favorite hiding place as an adult. With all great explorations comes great background music. Now some may call it "hippie" or "old school" but let's face it, it was inspiring!!! The pure talent of the musicians in combination with the raw beauty of God's un-touched creation is just perfection.  God intended us to enjoy His masterpiece with great reverence.  We have been charged with being keepers of God's creation. My husband gets so upset when we see humankind destroy forests. I think he secretly wants to be an activist just like me!! 

Gen1:26

My happily ever after....

I've heard the stories about every girl's dream on how they will find their knight in shinning armour. My story was a little different....some might say unique, just like me. I found my Prince...at WalMart. (Who says you can't find EVERYTHING at WalMart?!). He was the shy but out going guy of the group. He loved to laugh and make me smile. He liked loud music and fast cars, ok let's face it what guy doesn't? Most of all he lived to please me. To this day, he loves to make me happy. I could never forget our first Valentine's day, he literally gave me a huge bear, flowers, candy, more smaller bears and jewelry. How lucky was I? And I have to say, after almost 15 years of marriage, we still love eachother.