Made to survive

Surviving. Sometimes it takes us ages to realize that this journey that we are on is not the one we were meant to be on. Knowing when to be obedient to God's plan and will is the hardest thing. We are promised life, and life more abundantly. The sad part is that, most of us do not realize that abundance until our lives are turned upside down. Why is it that tragedy makes us appreciate life? Why is it that pain makes us appreciate health? You see, God's intent was never to harm.  So, it is us that have to find our way back to Him. Any autoimmune disease is probably the most difficult to live with. Your symptoms and body can change without warning. Dealing with stress is a key factor to a spoonie's success. The never ending cycle of doom begins once we become weak and give into our emotions. There is a reason why God tells us numerous times in His word to "do not fear". He knew that worrying and fear was our biggest battle. Another battle is the fight of the unknown. Not knowing if we are going to be well enough to continue on. Not knowing if we will be able to keep our plans, or be forced to leave early due to our many symptoms. The only thing that is certain and constant is His love. 

Back to boring

When answers are all you seek, the majority of the time you will not find them. Frustration, anger, helplessness, loneliness, suffering, the list goes on and on. And when it's your own child you suffer even more. Your heart breaks into pieces. Over the past couple of weeks we have relived over and over the doctors telling us that they don't know what his diagnosis is. "Let this cup pass" this phrase has come to my lips over and over again. But sadly, it has not. Isn't that how the Lord sees us in our circumstances? When in the Old Testament He walk so closely to His people, only then to go back up to the heavens and watch from afar. Disease, pain, famine, all things in which the Lord used in the Bible to bring people to His eternal glory. I heard on the radio that God promised Paul he would go to Rome. But, oddly enough, the circumstances in which he managed to find himself in were not how he thought it would turn out. He used the chains that he were literally chained to, to minister to the prison guards. Sometimes our boring lives, whether they're full of pain or not, are better than the unknown. But it is in the unknown that God has a chance to unfold His majestic wings. It is within that moment that He can cover us completely and prove to us that His Will was always better than ours. 

105 degrees and you're bundled up like its a snow storm

The sad thing about RA/ Fibro/ or any chronic illness is that it doesn't travel alone. You often find that once you have one, you start to pile them one like links in a chain. Raynaud's syndrome is common to have as a Spoonie. Raynaud's is "the inability to regulate your body's temperature correctly (my definition)." So when you get hot....you literally start to boil over, headaches, severe redness, and severe swelling. When you get cold, you get a frost bite feeling very quickly, numbness, stabbing feeling in your finger and toes. And heaven forbid that you go from one extreme to the next very quickly. The pain, the flu like symptoms, the chills...torture. I give this background because people often don't understand why I have on a scarf in the summer, or why I wear a jacket year round. Sometimes it's just easier to look funny than to explain it over and over again. Most importantly, it's about my survival. If I know that I will be going in and out of different temperature rooms, I just dress warm. Sure, the chance of me getting sick is higher...but the pain of temperature change is worse than an upper respiratory infection. Learning which way to tip the scale is the key to survival.   

What happens when your word betrays you?

I have always stood by the principle of your word. Your word is all you have. If there is one lesson that my kids remember I hope is is about the value of your word. But, as this disease progresses and takes on s new form, so does the ability to hand out the promise of your word. Your every move is calculated, precise, and completely thought through. Like an intricate game of chess. I was always amazed on how my children could sit down at the chessboard and before I thought of my first move, they both had the ability to tell me how they would beat me in 4 moves or less. Chronic illness is just like that, before we give our word, we must think about all of the possible outcomes and downfalls that we could face. Remembering to use "just enough spoons" so that you can keep your word is the greatest juggling act we will preform; however, if we succeed we will prove victorious once more. 

Masks and the life of a Spoonie

Being a Spoonie means that we become a master of wearing a multitude of masks. Masks that hide our true identity. Inside we are full of pain, we struggle with the reasons on why we are dealt this life. But we are never really able to unmask our true identity, except to those who see us when we are at our weakest. Those who see us struggle, but can only be a bystanders to the horror we live through. They see, empathize, but never fully understand the how's and whys. I see people live with chronic illnesses differently. I like to think that positive thinking and a specific diet can help your chances of being successful. But not all of the time does this stop a flare from happening. That's when I like to think of myself as an artist. I, myself, try to juggle the most important things first, and then scale it down from there. Lessons...lessons we learn the hard way to let it fall by the wayside. Survival becomes the most important. Everything else is just background noise. Learn to smile when pain is low, learn to lean on your support when pain is high. Life will only go as fast as we allow it to go. C'est la vie! 

Hope is more than just a four- letter word

Hope. Hope for a better tomorrow. Hope for a cure. Hope that maybe this disease doesn't get the best of us. Hope that the next time I need to open a door I will have the ability to successfully turn the knob. Because how shameful and embarrassing is it to always ask for help. To stand in front of a door or a jar of sauce knowing that at that precise moment this object has triumphed over me?! I can recall many moments such as these. Moments that typically an average person doesn't deal with. Moments like these that make us who we are...fighters. Sometimes that battle is just harder to fight. Sometimes medications designed to help slow the process have become complacent within our own selves, and instead of helping the disease have become a hindrance. Which is where we circle back to hope. I hope that this disease doesn't get the best of me. I hope that I can help others. I hope that one day there will be a cure. I hope that they will continue to make breakthrough meds to help with pain. But for now, I will cherish my time here on earth. 

New stage, new gear, complete gentleness

A couple of weeks ago I went to my routine check up. I try to stay completely positive. I try to be the most optimistic I can be. But, I was hit with some hard news. Life with a chronic illness means there isn't a shortage of hard/ bad news. I flashed back to when I was originally diagnosed. I was frozen with fear and the prospect of what life held. I was told that my current regime of medication isn't working to stop the progression. So, I came home and I pouted. I felt sorry for myself. I was upset about my circumstances.  And then I "put my big girl pants on", and decided it was time to get this show on the road. I let my crooked fingers do the walking, and did what I do best.....research. I researched the next phase of my disease. My discs in my back are deteriorating, my fingers are twisting under themselves (lateral deviation instability ), and the tendons in my ankle are separated from the recent injury. The doctor said that physical therapy would help, and being that I had a great teacher/ therapist, I went back to my original therapist. So far, her knowledge has helped me in more ways than I could imagine. But, the best part of all, I get to start sporting some new gear!  

The world on a string

Balancing a normal existence is like a circus act. Loving the time with family, but needing three days to recover is hard. I watched a movie last night (Miracles from Heaven), and there was a part in the movie when the little girl was crying saying "I just want to die Mom, I just want to stop the pain!" How many times do we as Spoonies feel that same way? How many times do we say those same words? We look forward to the day we can live with our Lord Jesus so our suffering can cease. But, something can be said for suffering. It molds us. It makes us new. It makes us be something that we weren't the day before. Living with ourselves, and this life, is a struggle for normalcy.  Becoming better than we were the day before is the best we can do. Even if we have to take a few days to achieve it. After all, we have a whole world who depends on us to rise and shine to tackle the day ahead.

Fit is a state of mind

Exercise, mobility, activity. All words you hear from the imfomocicals on tv. The elderly people who can walk again, or swim again....all because of a miracle vitamin or drug. Truthfully, our healing has to start with our will to want to get better. The choice to start each day with positivity is essential. Thanking God for the chance to prove to the world that we can overcome this disease, even while waiting for a cure is humbling. There are days when that joy or positivity is so hard to find. When putting one foot in front of the other is such a chore. But in those days, we still have breath. And breath is life. And breath can help us center ourselves to focus on one task at a time. One thing that I find helpful is yoga or even simple stretches in bed, in a chair, or on the couch. We don't have to run a marathon to stay fit. Fit is a state of mind...doing enough activity to help keep our joints limber can go a long way in our healing process. Be gentle with yourself. Only you know your limits. 

When we trust...

Trust. A heavy word. A meaning of complete vulnerability. Trusting a medical professional with your health and diagnosis is the hardest thing. Trusting that your family will be there without a reasonable doubt is even harder. When you get an autoimmune diagnosis, the walls of a perfect life are shattered. You are no longer self-sustaining. But isn't that what God wants from us? Does He not want us to be completely reliant on Him and His promises? I know sometimes we smile through the pain because that is so much easier, but Jesus didn't hide His suffering. He literally carried the cross so that we could have hope for a better tomorrow. Learning to not focus on the bad, and using all of our energy to push forward is essential in our self healing process. I know, it seems impossible a lot of times. Trust me. But I must think that there's more to life than just pain and loneliness. Becoming completely transparent and allowing the world to see us as a Spoonie who clings to hope like an anchor is the best image we can have. Trusting that we are helping others understand that we haven't reached the top of the mountain yet, but we must persevere. Even if it does take 6 years to get there, at least they can say we were persistant.  

Legacies

Life. Something that isn't ours to give or take away. When we see the price a life is worth, we see things in a different way. Having your legacy continue on is something we all secretly desire. One thing we as spoonies do not realize is that, sometimes our legacies can not continue. Sometimes that legacy is a lifetime of chemo and pain meds. I've always said that we had our kids early, but God knew the reasons why. What if I had waited? I would not be in the stage of life I am now. I am thankful that we had that option. But for so many, that choice was made for them before they could ever consider a family. The Lord wishes for everyone, including Spoonies, to experience life...and life more abundantly. In today's society we have options to help our legacies and life go one even after we are gone. As a teacher, we have the chance to be a part of so many children's lives. In turn, they become a part of our legacy. Thankfully our story doesn't have to end with negativity. Anything is possible when our heart is open to love and opportunity. 

Loneliness is a hard pill to swallow...thankfully it's not always necessary!

Shop talk. Being understood. Knowing that you're not alone on this journey. If you would've told me five years ago that I would have a positive impact on others in the Spoonie community I would've told you that you were crazy. Every Spoonie faces different challenges, but we have one common thread that ties us together....our bodies fight a battle against itself. And even though others try to empathize with us, no one but a Spoonie can truly know how that feels. The age old saying about misery loving company comes to mind...but maybe in not so much a bad way.  The comfort in knowing that we are not alone, this is not in our heads, and our pain is very real all brings peace to our souls when we find a kindred spirit. Even in our lowest moments, God has a way of reminding us that He is still in control. He has given us a chance to be with a community of weirdos who share our same quirks. A place where we can compare our symptoms and allergies.  This place is our safe haven. The place where we can be ourselves. If we have the chance to find such a place, grab on to it with both hands, hold on tight and NEVER let go.  Being understood is the closest thing to a cure that we can ever experience. 

Change is always an interesting ride

Change. Meant to mold us. Meant to grow us. Sometimes that process is brutal and makes us regret ever making the decision in the first place. There is one thing about change that is always certain, it evolves. It will either cause you to evolve into something greater than what you were or something less. When do we decide that enough is enough? How do we know that we just can't take it anymore. That the current way of life just isn't cutting it anymore? Life will take you on the craziest roller coaster you have ever been on. It will take you on highs, lows, twists & turns, and sometimes we will even go backwards...several times. Thinking that we have mastered a skill set or that the outcome will be different, but never realizing that it was never meant to be. We are called to trust. Trust that our journey will be for a greater purpose. When hardships come our way we should embrace them. Look forward to the growth that is to come. Throw your hands up, close your eyes and scream at the top of your lungs and enjoy the ride of your life. One thing is certain, we only get one chance at it...let's make it the best we can! 

Converse and Twilight Tees....

Another day of life. Another day to call my own, or His own.  Today is my birthday. And rather than go out and see the world, the reality is that my true wish is to just stay home. Relax. Be a lazy being, without the need to tackle my support hose.  As this year started, I remembered a saying I once saw. "Pain deserves to be felt." As a spoonie, pain is not a stranger.  It is present in every second of our existence. Managing the pain, being able to dull our pain and still exist is a challenge. So how do we deal with the pain? Vices. We all have them. Whether it's a routine, yoga, cooking, specific diet, blah blah blah.  Yes these are MY vices. But I find that my whole world melts when I am in the kitchen. With a recipe in hand, I can conquer the world...or so I feel that way. So whatever it is that brings you to your happy place, go there. Full steam ahead and a cheesy smile on your face. You see, in this world of disappointments and pain, a smile will always be the most contagious thing you could offer them. Shine on my fellow Spoonies. 

Head, shoulders, knees, and toes...

"🎼Head, shoulders, knees, and toes, eyes and ears, mouth and nose ..." For a Spoonie this is more than just a children's classic tune. It's our reality. The reality that a flare will hit one or more of these body parts. What happens when that Mack trucks hits us head on, but life around us keeps spiraling like a tornado? Answer....there is no right answer. The way we deal with flares, stress, new diagnosis, and the inability to do daily activities, shows our inner strength. But a new strength needs to be found when this disease starts to affect your organs. Research suggests that when this happens the disease starts taking on its own face. It's like it's own "unwanted friend" rearing its ugly head in every aspect of your life. Suddenly you have to switch gears again. The "new normal" begins to take shape. You go from walking canes to support hose in the blink of an eye. Your stomach deceives you every chance it gets. And if you sneeze too hard, be prepared to pop the blood vessels in your eyes! But nothing compares to having to work against your own body day in and day out. Remembering that our strength comes from the Lord should be our daily motivation. 

Rusty cars and the road ahead

You know, the recent celebrity that died due to RA kind of made me realize that this disease is real. We all may have good days, bad days, or even days that we skate on through, and pray that we make it to the couch at the end of it. Living with RA is complex. When I was first given my diagnosis I cried. I cried because my life would forever be altered. Then the diagnosis didn't stop there. It was like after one came another, then another, and another...and pretty soon I felt like a rusty old car who could barely chug along the highway. Somewhere in the midst of all of the chaos, in the midst of all of the hurt, God used my story to help people. I could use my experiences of meds, doctors, and natural treatments that have or have not worked for me in the past. THIS was why I was given this blessing. RA does not discrimate on age, gender, race, or ethnicity.  Being able to grab the bull by the horns and remind each other that we are not alone is the most important thing we could do. In life we are meant to evolve. As a spoonie, that just means that we evolve into a different kind of flower we thought we would become. 

Discouragement is so easy to come by!

In a world of fairy tales and Disney princesses, happily ever after seems like something that is owed to us. The perfect life, body, and house can be obtained for the right price. What happens when that perfect life is compromised? What happens when diagnosis after diagnosis is thrown at you like a automatic tennis ball thrower? You try to hit as many balls as you can, but realize that you're barely skimming the surface. Eventually, you fall down and take cover. You spend so much time on your knees  that you forget what it feels like to stand on your own two feet. But the best part of spending time on your knees, is that it reminds you that we are not in this alone.  Finding fellow Spoonies who have "been there, done that" is the best happily ever after for someone with an autoimmune disease. Because having the perfect body is, let's face it, a fairy tale in itself.