When the glass slipper drops into a million pieces...

It seems that every time I go to the doctor, I come out with a new autoimmune diagnosis. Frustration, anger, pain, and betrayal. Just a few emotions that rise to the surface when I think about how this body has gotten the better of me over the past decade. I constantly have to be “on my game”, but even then, I am bested by fate. When I hear of people who are at the losing end of this battle, I thank God that I haven’t made it thus far.  Realizing limitations and being comfortable to set your own standards are key.  But, rheumatoid diseases aren't so forgiving all of the time.  They demand to be heard, seen, and felt.  They are like our own personal demons that we have to battle each moment of every day.  The most positive part of the story is that Jesus reminds us that we are His creatures and we are wonderfully and perfectly made.  Our earthly bodies are just a temporary vessel, so it doesn't matter what this life brings us, in time we will shed this skin. 

Kindness is free, share a little with everyone you meet!

Kindness, patience, joy, and love make up some of the values that we aim to teach our children.  We as parents try to make sure that they grow into respectable humans with core values that are rooted in Christ.  But, what happens when you fight 24/7/365 within yourself? When the struggles deep inside are too much to bear? Is it still possible to show those values? We are called to "clothe"ourselves in these values and forgive our neighbors and enemies.  Sometimes the enemy is our own immune system.  As a fellow spoonie, I can say that faking a smile is the norm.  Helping others in order to escape the pain brings a satisfaction that only lasts for so long.  But maybe that's what Jesus meant when He said that we should love unconditionally.  The hope of a better tomorrow is our driving force.  We give all of ourselves in everything that we set out to do, knowing that later on we will pay the price of horrible undeniable pain.  In reality, what is my earthly pain compared to the pain that Jesus suffered during His time on the cross.  And when we look closely at that lesson, even in death, suffering, and the worst pain imaginable, Jesus still showed kindness, patience, joy, and above all LOVE.  So, who are we that we cannot put our best foot forward to do the same?

When I was young....

As I get older I sit back and compare my life to when I was younger. Things were different....so innocent and pure. As my husband and I drive past the river, I recall many trips down the Nantahala. I was what some might consider a "river rat". I loved rafting, but oh how the rapids have changed! Now if offered the opportunity to ride the Nantahala I would not only be immobile for days, but I would probably die of hyperthermia after two minutes in the water.  Not to mention the problem the sun and I now have with each other. That in itself is a whole other post! Let's see, what's next...food! I can remember eating ANYTHING I wanted to. Now, before food can even touch my lips I have to take meds to protect my stomach! And even then it doesn't always work. RA has made my stomach lining so bad that I am surprised that I can eat at all. Ok, next subject before I get sad and have to go bake....which then goes back to food in my stomach. Energy! I remember having energy for days. I mean literally, DAYS. I would sleep on occasion and be perfectly fine. Well, not anymore. Now it's a toss up between  pain insomnia (which is totally different from regular insomnia ), and complete and utter exhaustion that keeps me bed ridden. No happy medium. But then again it's autoimmune, who said anything about happiness! Lastly, perspective. My perspective had changed. I now see that this isn't going away. This isn't going to be able to be hidden away in some deep dark part of me and never resurface. My disease is only getting worse. It's evolving into a beautiful monster that will one day consume me. When I was young I thought myself to be invincible. Now I know that to be untrue. It is every facet of RA/Fibro/ Raynauds/ TMJ/ Rosacea that is invincible. I am just a simple pawn on the board. But, the beauty of a simple pawn is that, if played correctly, I can ultimately be a Queen. 

My testimony in 3 minutes or less....

Recently I had the pleasure of listening to our youth give their personal testimony in 3 minutes or less.  They said that this testimony impacted their peers on a level that was beyond belief, especially themselves. Seeing the works that the Lord had done was inspiring. So, I thought this would be a great thing to share with my fellow readers....my testimony/ life before salvation, after salvation, and presently. 

As we all know I was raised in church, by a village of church goers. My family is HUGE. I was saved and baptized when I was young, but I strayed from the Lord just as all teenagers do. I was self-centered and angry. I married at a young age and pride ruled my heart. I still attended church and had a half relationship with the Lord. It wasn't until my son's biological father sued me for custody when he was 16 years old. At the same time, I learned that my daughter was suffering with severe depression and self harm. I was BROKEN, but Jesus knew what I needed. Numbers 23: 19.  This was my rock bottom. I was devastated, but the Lord promised me great things for my children.  I rededicated my life and made time each day to spend with the Lord.  The custody case went in our favor, and our daughter slowly got better. Eventually, her story had a rocky beginning but it is getting sweeter by the minute. Presently, I still live with my many autoimmune diseases that are a huge struggle, but I have a great small family to call my own.   We are not prefect, but we have each other. I've learned to set aside time for the Lord, and time to listen to my body. 

Sharing the GOOD and the BAD

My nest is only halfway empty. My daughter, has long since been gone, but not REALLY gone. She shows up for the impromptu visits, or we get together regularly for our bonding time. My son, well he says "why leave? Free food and free housing!" But, for a while now we have been battling with his illness, moodiness, all together, just not himself.  No matter how much I sympathized, I was still not the person he needed. So, in the midst of all of this, my health kept suffering. Yeah, stress. Stress that once it enters the mind will eat at your innards, and eventually start to deteriorate you from the inside out. So I dove deep into my faith.  Deep into what I knew to be safe and secure. I clung to the Bible's promises for my life and that of the lives of my family (but mostly mine, just to be honest).  As mothers, we are not allowed to get sick, show weakness, or be vulnerable. WE are the rock that our household stands upon...well maybe more like the cement mixture they put on the rock when they are building the house.  Lol. Because in all fairness, Jesus should be the foundation, if we let him. So upon this journey, I was pointed to this passage in Romans 8......

Romans 8:17-18

"Now if we are children, then we are heirs- heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.  I consider that our present sufferings are not worth comparing with the glory that will be revealed in us."

When I ran across this passage I was shocked. I stopped in my tracks. Jesus suffered. He suffered 10 times over that of what we could possibly imagine. Therefore, if we take the bad in this world and give thanks for it, we might be able to appreciate the good that much more. Whatever we are going through will never compare to Christ's suffering. As the passage says, share in the suffering in order to share in his glory. The good and the bad!

Understanding and patience can be a welcoming friend

When I admit to someone the truth about my disease, they are normally speechless. Learning that I am....different....is a lot to take on. It's not easy to hear that I inject two different medications a week, take countless pills, and sleep with a heated blanket every night because of my diseasES. That's right, plural. That's another freak out. I usually get the "oh my" or "bless your heart" or worst yet the blank stare of overwhelming news. It takes a special person or persons to genuinely handle the news of an autoimmune sort. The worst part is when I get the "have you tried...." YES!!!!! And truth be told, I would love to be rid of this. I would love to pretend that this was not a part of my existence. When I finally find an understanding friend, it's almost like ice cream on a warm day. It soothes the soul. It's so hard to go through this life pretending that you're normal. Pretending that you're not in pain all of the time.  This life has so much to offer. We only have to remember to keep our eyes on the prize. Most importantly, we need to remember that we are not alone.  

Scars run deep

Scars may or may not always be visible. Some of us go to our Rheumatologists quite often. And at these visits we are given the prospect of surgeries that will have to happen in the future. Sometimes those surgeries can leave ugly scars. Although the hardest part about surgery isn't the scar left behind; it is actually the realization that this roller coaster is NEVER ENDING. We will die this ugly fate. We will begin to shut down organ by organ. We will begin to avoid what we used to welcome as fun just because we are afraid that we can't handle it. But is that what God wants for us? Is that what he meant when He gave us this life? He knew, HE KNEW, us BEFORE we were born. And yet He knew the struggles we would have. So, why throw in the towel? I say fight! Fight like the Dickens and give God all of the glory! We don't know how this story will unfold exactly, but we know that His strength is in us. And His scars were greater than mine! So I guess wearing them with pride won't be so bad! 

Cancer vs autoimmune.....who wins this epic battle?

Often times we as Spoonies experience ignorant people who make you wish your disability was so visible that they would just eat their own words for breakfast. A few years ago, my RA took a turn for the worst, and began progressing so rapidly that I had to get a handicap placard. The registration clerk warned me of the harshness of the public. She stated that people didn't care about the type of car.  The only thing that mattered was the fact that I was a young woman with an invisible illness that "looked healthy". A few Christmases ago I had the public ignorance show when a man cussed me because I didn't look handicapped. This came DAYS after I had a hand surgery. After that encounter I started to feel like cancer patients have it so easy. They get the break that Spoonies so need and desire. They get the understanding and sympathies. While we are still proving that the attacking cells in our blood are not poison, yet we have to use the same poison the cancer patients depend on to live. The only exemption is that these cancer patients get to be free of their burden when they reach then end of their rainbow. The life of a Spoonie is not that forgiving. We have to continue with the poison. We have to continue with the ignorant comments, horrendous insurance companies who need proof of our illness ever time we start or stop a new med, and the prospect of maybe one day they will beat RA just like they have beaten cancer. Until then I still say, Spoonies have learned that our need to always be positive is essential in our continuous journey of the mythical pot at the end of a never ending rainbow.

When pain is your trusted companion

We all laugh at the generic hospital pain scales that we see posted at different medical facilities. The truth is, we live with pain just like we would tolerate a distant relative who has overstayed their welcome. Though sadly, after so many years, pain is only noticed when it's screaming at you in the face. No one gets it. No one gets that every move, every feeling has to be precisely calculated. One super stressful day, one sickness, one wrong response can trigger a series of events that can take weeks to overcome. In the meantime, your heating pad becomes your best friend and you keep telling yourself and everyone around you that you're just fine. Mind over matter. If we ever did let ourselves give into pain, the outcome could be debilitating. But how can we allow pain to have that much power? Sometimes grabbing the mythical bull by the horns and hanging on for the ride is the only choice we have.