Timing!

Too often we try and get ahead of ourselves when it comes to our life. This is extremely true for someone like me who is a “fixer.” When something isn’t going the way I want it to go, my first instinct is to do whatever I need to do in order to fix it. BUT what I am learning, I am in a place and experiencing things that are necessary to grow my maturity level, to grow my emotional strength, my physical strength, and my emotional strength. We often don’t realize that it is through trials, tough times, valleys (whatever word you use) that we grow!

Human nature, when we are dealing with things we don’t want to deal with…or in a place we don’t want to be..our instinct is to automatically do whatever we need to do to get away, or to get out. BUT again, I have seen that when you stay (until God opens the door to leave) you grow so much! Part of my faith is the trust and belief that God has a plan for my life. He knows the next steps, he knows the end goals, he has seen my future. He knows where I will end up.

Again, the fixer in me wants to see things done now! BUT the childlike faith of mine also wants to PRAISE GOD and see what the future will hold. I have grown so much these past few years, I will continue to grow in the future. And I am thankful I realize that some day I will be extremely thankful for my valleys. In fact, I have no doubt one day I will look back and go wow…that valley CHANGED MY WORLD FOR THE BETTER! It is hard to say those things now, it is hard to see joy and trust in those tough times…but ultimately….God wants us to do just that when we are facing tough times.

I have an app on my phone, it is a Jesus Calling app. I try to read it every morning…it doesn’t always happen but I do try. I will say…that EVERY SINGLE TIME I read it….I am blessed! EVERY SINGLE TIME the words I need to hear are written down. This is the second Jesus Calling book that I have used in my life, the first one I used those first months – year after the hospital…it was something I needed. And this book, it exactly what I need too!

Wait! That word is soooooo hard for me…but I am waiting, I am believing, I am trusting that YES the BEST IS YET TO COME! If you are in a place like me…where there are SOOOO MANY things happening, things you cannot control, questions that need answered, pain, fatigue, and it feels like your plate is overwhelmed…just rest and know that GOD HAS IT! He has you in his hands, he can carry the burdens..you DON’T have to carry those burdens!

Is it easy to leave it in God’s hands???? OH HECK NO! I want to say God here it is but JUST LET ME…and I’m learning to leave it means to not ask “JUST LET ME GOD.” It means GOD YOU HAVE IT…I LET IT GO!

Hugs tonight! Stay Strong friends!

XO J

It’s Finally Here

Twelve years of work came in the mail today. I’m thankful despite all the past years have brought, this goal is officially finished. So many have asked how, I don’t know. Determination to finish a goal, pushing myself through the most miserable pain and fatigue, it is worth it! If you have a dream for education, please don’t let yourself think it can’t happen because of an invisible disease! 

   
       

Thankful

This past week has been an awesome week of contemplation. I have realized on thing, I am super thankful for those in my life (as I’m sure you are too) who understand! It is so so so hard to live this life, harder when people don’t get it. People who don’t “see” your pain, don’t “see” your fatigue, and don’t let themselves sit in your shoes and try to get it.

I spoke to an amazing friend this week. She has been battling getting her infusion for the past week!!! And still to date nothing! And she mentioned talking to the insurance person, and explaining our world. The person on the line didn’t even have a clue! Didn’t realize the life and pain. I was touched that my friend reached out and shared her journey with a stranger on the phone. That is brave! She reminded me that we have to share our story.

When we feel like no one cares, it is rough. We want to give up, clam up, and just dig a hole. No we don’t have an awareness month, no we aren’t as well known as other diseases like cancer, diabetes, epilepsy, or others. Those are tough diseases but our life is too! We need the same understanding too!

So my nugget for the week, share! Share your journey and share your story. Only by our sharing will people begin to have a clue! 

My name is Joanna, since 2010 I’ve battled Rheumatoid Arthritis, Lupus, fibromyalgia, sjogrens, and Chronic Fatigue. I’ve been on Plaquenil, MtX, Arava, Imuran, Enbrel, and now Enbrel/MtX. I take chemo once a week and a shot once a week. Systemic issues as a result of my diseases include asthma, diabetes type 2, heart murmur, elevated liver enzymes, gum issues, loss of vision, dry eye syndrome, and hearing sensitivity. Most days, I feel as if I’ve been hit by a car, run over, dropped off a cliff, run a triathlon, and that every joint in my body is broken. I get little sleep because I hurt so bad. Despite the pain, fatigue, and sleep deprivation….I have decided to get up each day and live my life. I have earned a doctorate, work full time, am a wife, and a home business owner. This is my story that I’m sharing so you can try to understand my life, my pain, and my diseases. I have these horrible, degenerative, painful, systemic diseases, BUT they don’t define me, I define them! 

We have faces

I think the one thing that I thought a lot about this weekend would be the many faces and stories behind the many invisible diseases that are out there in the world. Often times we talk about the patient, the medication, our doctor appointments, our rheumys, and many other health care professionals that are often included because these diseases often are connected to many other systemic issues. We talk about the side effects, the pain, the fatigue, the joints that don’t work or hurt so bad, and so on.

This weekend I had the pleasure of talking with a rheumatologist who is interested in hearing more about the patients themselves, and trying to understand that many different (sometimes less spoken about) things that we face. These areas  could be goal setting, managing your disease at a level far deeper than “just making it.” As we talked I had the realization that too often we might overlook the importance of remembering who we are as people, our story matters.

So I posed the question on my page and I loved the responses. I loved getting to hear the stories of some pretty awesome women! Two women battled JRA from the time they were babies, we are talking 18 months or 2 years old! Could you imagine that….I don’t think I can even imagine how that life would be. Their perspective of “living life” is far different than mine. I had a life…granted it was painful (no doctor could tell me why) but it wasn’t until my early 20’s that my life took this turn. I asked these women about their childhood, having to take medications as little girls, having to go to school (elementary, middle, and high school) in pain….gosh their lives has been different than mine. Their stories were so cool! I loved that they shared snipits of their journey of life to today, again making me realize…how much I love hearing the story behind the face of this disease. We have many dreams, we have many different lives, some of us work, some of us don’t work, some of us have children, and others we have furry kids. We have different dreams, different aspirations, different goals, but we are all fighting each day to get up and make it through the day. We are fighting to not be defined by our disease but to define the disease by our lives.

I appreciated the conversations this weekend, with the many different people who took the time to talk to me. THANK YOU! I would definitely encourage you (if you haven’t already) to check out this site. Pizer has been doing some interesting research on patients and RA. I have found their global survey very interesting, check it out (http://www.pfizer.com/news/press_kits/RA_NarRAtive).

I like you tonight, have had a rough day. Little sleep last night, and major pain. I’m hoping that when I see my rheumy here in a few weeks we can find a bio/mtx combo that does help. Unfortunately I don’t think that is Enbrel, but there is hope for another combination. Today has definitely been a long long long day but I’m still here, pushing through to the next day! That is what we have to do…fight, get up, and try again.

To tomorrow, I hope it is better! And if you are like me tonight, please don’t stop fighting. I know this world seems so lonely….I realized last night (or really this morning) at 2:00a.m. how lonely it feels to be in so much pain that you can’t sleep…but the world is asleep (unless you are in the other side of the world…then you are wide awake 12hrs ahead! 🙂 ). Those hours that drag by…those hours test your mental, emotional, spiritual, and physical strength. A war is fought during those many nights, a war of letting go and giving up or hanging to the thread and telling yourself YOU ARE WORTH IT, and you can still live a life and do great things. If you are in the boat of fighting that war tonight, I hope you realize that you are truly worth it, share your story (even if you just write a note to yourself) so that you know you are the face, you are the story, behind this disease!

XO J

The hills! 

Do the hills ever get to you? I’ve had multiple times this week where I realize…wow so many hills to climb. Lord will the hills ever stop? I think one thing (often, in my opinion) not talked about is the mental and emotional joinery that we are thrown into when we live a life of nonstop pain and fatigue. The mental and emotional….some times I think those are the hardest subject to talk about. We don’t want people to know our deepest scars…our mental exhaustion and pure tiredness of pain. I haven’t been pain free in Sooo many years…I don’t know what it feels like to wake up pain free. I know I’m not alone in that category, many are like me.

The downside is unlike those who don’t suffer daily in pain…we have to make the mental choice to push through our pain and living our lives. Sometimes “living” is moving from bed to the couch. Sometimes that is getting out of bed to shower. Sometimes that is just having one conversation with a friend….because socializing and talking…it takes energy.

There is much more to be said on this topic…but since I’m flaring I’ll leave this here for now. I know my heart and passion for the understanding of the mental and emotional toll….this conversation will come again.

If you are one like me fighting, hang in there! We can do this, rest and prayerfully we wake tomorrow to another day of….fighting 

XO J