Four Words That Changed My Life

“You Have Myasthenia Gravis (MG) ” (Generalized) – April 19th, 2017

What is MG?   (Great Information on the Myasthenia Gravis Foundation of America Website)

I never thought it was humanly possible to feel so much pain, relief, confusion, anger and uncertainty in 15 seconds, as I did that day. I was completely flooded with emotion. I felt as if the room started to spin and I had no choice but to hang on for the ride.

Once my eyes went back into focus, from my state of disbelief, I was able to start having a long dialogue with my neurologist. I was very blessed to be paired with this particular doctor. He listened to me. He told my husband and I, this was a team effort and he would not settle for anything less than my happiness and well-being. But it was going to be a journey, not instant.

He looked us in the eyes and said,  ” There is no cure, however, we will find the best medicine for you. Everyone is different. But we have to dig our feet in and get through the worst before it gets better.”

“Worst ” did not necessarily mean symptoms, although that is also the case, but the  frustration to follow as one medicine after the next, really wasn’t working for me (IVIG DID work, but as most MG-ers know, it does not last). And my particular case was extremely confusing because we had to start figuring out what was MG and when would it be post-operative complications from my surgery, that in turn makes my MG worse. More on that in another post.

Needless to say, our lives have greatly changed as we have only been on this journey for about 2 months now. It has been a long list of doctors office visits, specialists appointments, testing…..more testing, hospital stays and infusion treatments.

I will never give up, I will never give in. It is not my upbringing or my personality.  I hope one day I can become a spokesperson in the MG community; encouraging others. As well as educating doctors, future medical professionals, friends and family, about Myasthenia Gravis and the importance of finding a cure.

#MGStrong #Live2Inspire1 #MyastheniaGravis #IHaveHeardOfMG

 

Update June 18th, 2017

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Rambling update post- not very organized, just a lot of thoughts 🙂

It has been a while since I updated my blog. I have to say, I do miss it. Most of you have been following this blog for a while reading about my recovery from my tonsillectomy and the struggles that followed. After that, I started writing about my journey as a St. Jude Hero and the path it took me preparing for my celebratory half marathon, November 2016 at Disney World.  This run was to prove to myself I was not going to let my  post operative complication beat me.

In all honesty, that race was the best thing I could have ever done for myself. I never realized it, but I never did a post about it once I returned  from my trip. I AM SO SORRY!! It was all on Facebook. I will do a post about it after this one!

The blog has taken several different turns from gardening to movies and it was just a place to help me through the most difficult times of my life. Hopefully now, my blog will be more consistent with this new journey I am about to begin.

The reason why I have not been posting since my race in November, is because I never really recovered from my race. Meaning, my energy never came back, I was sleeping all the time and my everyday stamina was down.  Basically it felt like I was back to where I was 6 months after my surgery. We were very confused. However, we took it a day at a time, never giving up.

We got through the stress of the holiday seasons (Thanksgiving, Christmas, New Year’s, Lent, Easter…) ; as a pastor’s wife this adds a whole new level of stress but we anxiously awaited spring to begin running again. Then one day in April, everything changed.

I started feeling more and more tied. Getting up for work each morning felt like I had been hit by a MAC truck, it now became a chore. Bedtime came as early as 7:30 pm and I could barely make it to Church on Sunday, due to exhaustion. I just could not keep up.

As I was driving home from work one day I noticed the lines on the road started to blur. I blamed it on my fatigue and kept going. One day lead to the next and suddenly there were TWO distinct sets of lines on the road. I immediately pulled over until it cleared up.

The following morning I wanted my boss to know, so I sat him down to inform him what was going on and I was needing to see an eye doctor that day. While I was talking with him my eye lid started to droop. I have never been so frightened in my life. Stroke, aneurism, Multiple Sclerosis (MS), were all words flash before my eyes.

I did not know it then, but the days to follow I would be diagnosed with a very rare neuromuscular disorder name Myasthenia Gravis (MG). 

Be The “Upper Hand” For Christ: Know The Details

I have heard it said, it has become much harder to keep young adults and youth in church. Too many things are competing for their time and the priority is not there. Plus the social changes going on right now are making the millennial back away. Then I am asked, how do we, a smaller church, have so many generations? My answer is: We teach them. They are equipped, not entertained. Let me explain…

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Image used from “God’s Not Dead Bible Study” http://www.GodsNotDead.com

We are a small church. We do not have a rock band or fancy lights. We do not have the most recent songs on the radio playing the second you walk in the door and we still use the phone tree to pass along prayer requests. Email is being used for those that prefer email, but we still greatly rely on the phone tree. Yes, all the things I listed above are great things. I love going to a great worship service just as much anyone. In fact, I love visiting churches when Marshall has his Sunday off and we get to worship together (that is a VERY rare event for pastors and their spouses) in a style I grew up with. But is that ALL that makes up the Church?

But let me tell you what we DO have. We have a strong foundation. Our foundation is Christ. We teach the complete 360 degree view of the Bible; not just what makes us feel good. We do everything in our power not to cut verses to make them sound justified to our own gain. And we certainly make mistakes! We are not perfect.

As long as our youth and young people know, we (the leaders), give them as much information as we can and as many resources as we can, then God takes over from there. We equip; we teach. We train them to search for answers. That is our goal. We want them to think for themselves.

If we are not learning, we are not growing and we will never understand how our spiritual maturity is suffering because we are not actually absorbing and understanding facts; just concepts.

Concepts are great; do not get me wrong. But the details, that is were evil likes to fight the youth. Challenging their thinking, making them second-guess anything and everything they have ever known growing up. Evil loves the silence. It is the silence that happens when a best friend gets in a fight with them over what they believe and why, then they struggle to respond. The silence is where evil wins. When they can’t defend their beliefs, they can’t understand the attacks.

How can we battle evil in this world without details? That is like showing up to a fight in dress shoes or high heels. You will make one move to protect yourself and fall flat on our face because your feet had the wrong foundation. It was slippery, you fell basically on your own and the opponent takes advantage of that and has the upper hand. Game point.

Teach your youth. Teach them to be resourceful. Teach them to ask questions, then ask it again to someone else, then ask it again to the barista at the coffee shop, then ask their pastor. Let them know “why” people’s answers vary. Interpretation of scripture is hard, I will be the first to say it. But until you fight to understand and learn the details, the conversation will almost always turn out like this…..

Person: “Why do you belive that?”

Youth answers: ” Because so and so said it… or I heard someone say it on Sunday”

They never answer with ” I believe………, because when you look at the book of ____ in the Bible……. and then I read a book from a theologian named…… and then a  commentary from …… which assisted me to understand…. ”

See the change?

Be the change. Know the details. Grow to be the “upper hand” of Christ in the fight.

 

Diary Entry: St. Jude Hero Page From 2011

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Below is a post I had written for my St. Jude Hero page, the very first time I did this fundraiser and prepared for the Half Marathon in Nashville, TN .

(Written The First Year After Aaron Earned His Angle’s Wings) 
All my life I have competed in one way or another. Swimming, dance, pageants, riding horses..the list goes on and on.  In that time, I developed a since of competition with a purpose, knowing that win or loose, the efforts were still contributing to something bigger than yourself. Nothing held more true than the night of June 5, 2010 when my own idea became reality and hit home.

 The final night of my National competition the phone rang and my worst nightmare came true. My little cousin, Aaron, had lost his battle with Leukiema and I was far away from home and far away from my family. However, I could not leave the competition.  Not because I physically was unable, but  because I made a promise to a little boy lying in bed at  home, that wanted nothing more than to come watch me compete at my big event that I would stay.  Aaron told me the night before I left, “I am so proud of you and promise me whatever happens, you will finish. Win or loose, you will always be my queen. I love you.” The last words he would ever say to me before he died and big words at that. These words came from a child who had spent months at St. Jude’s fighting a Leukiema that was extremely aggressive and caused much pain, and knowing he barely had much time left. Regardless of what he felt, he found the strength everyday to  put others before himself in every aspect of his life and his treatment. 

 Aaron was the child, that loved unconditionally and without cause. When he spoke to you, he made you feel like you were his favorite. A gift that truly was unique and special. 

 During his illness  he was  more worried about his family being o.k and  going through the process of treatments,traveling , and the education of his cancer, than he was for himself and what he would and did endure. He never wanted tears and he never wanted pain for all around him and spoke of that often. He wanted everyone to be happy and enjoy each day they had.  A remarkable young boy with a huge heart filled with wisdom of love and kindness  that normally takes a lifetime to obtain. 

 I truly believe,  that with the help of St. Jude’s , that thousands of child’s lives will be saved because of Aaron. That they will find a cure to this rare and aggressive form of cancer normally found in adults, that has discovered its  way into children. 

 Aaron taught me my own life lesson. A thought and moral standard my parents  instilled in me for years. He brought it home, he  lived it no matter how bad things got. If he can go through, numerous treatments, bone marrow transplants and tests and still put others above himself, then I can run 13.1 miles in his honor to help St. Jude’s come that much closer to finding a cure to save the lives of thousands. 

 Aaron did his part in contributing to this  process, now lets do ours. Please donate for this worthy cause and support me in raising my monetary goal in Honor and Memory of Aaron.  The boy who loved others the way they wanted to be loved, the one who put others before himself no matter what he endured and the one that saw his purpose in the big picture. 

 Thank you from the bottom of my heart,

Deanna

Spring Cleaning! This Includes Your Mind

Blog Spring 2015

If you ever think you are alone when feeling down during the winter, believe me when I say this, “You Are Not Alone ! ” Everyone experiences this in one way or another.

During the winter months, people forget how much they actually need the sun. Friends living up North, especially in PA, tell me stories about companies putting Vitamin D lamps into their offices to make sure employees get some exposure to sunlight during the “Gray Season”, even if it is artificial.

Due to the weather, we often find ourselves stuck in doors, or having days upon days of cloud coverage that prevent the sun from shining on us. Soon we start to feel down, cranking, edgy and overall just EW!

So with Spring quickly approaching us, I came up with a “Spring Cleaning” for your mind. How Fun! People do cleanses for their body to stay healthy, why not do a mental one? Once winter is over, take this day the first opportunity you can and get. Do not put it off!

First let me state: I am not a doctor. I am not a scientist, a nutritionist nor do I suggest anyone doing any physical activity without being cleared from their physician. Shew, now that, that is out-of-the-way…. 😉

Last Saturday, it was our day.  The sun was out, the temperature was about 70 degrees (basically a heat wave from what we have had the last few months) so my husband and I took an “unplugged” day to be outside. We hiked, walked, played with the dogs, grilled outside and just talked. It was the perfect day.  Now, when I say “unplugged” day, are phones are still on due to the nature of our work, however, we make a valiant and conscious effort to not be on them. Only in an emergency. If you have the ability to turn your phones off, I HIGHLY recommend it. The temptation is gone at that point.

During our “unplugged day” we talked about everything from, what the last year has been like from my tonsil surgery, people we lost through the year 2014, special events (EASTER!!! YAY!) on our calendar that are coming, what we were going to eat for dinner ha! and anything else that we could possibly come up with. I feel when we do this, it is a full mental cleanse for me and for him. Basically, we talk until you are “talked out” . And for me, literally I lose my voice by the end of it and can’t talk anymore. It is awesome!  However, there is one rule to this day. For every topic you come up with, if it is sad,  you have to counter that story with a special/happy memory that also included the same topic.

Let me give you an example:

Talking about a passing of a family member:

Talk about them! Talk about how much you miss them. Talk about how it makes you angry or sad. Talk about how you feel it is unfair or “how could this happen?”. Let it out. Do not hold those feelings in.

Counter story: Then when you are finish, start talking about your favorite memories with them. The ones that brings an instant smile to your face or makes you laugh even when tears are pouring down your cheeks. I feel the worst thing you can ever do after loosing someone, is stop talking about them. Too many times I have seen this done with families and it ends up hurting the other members of your family even more. Everyone grieves differently, but I highly encourage to make an effort, when you are ready, to talk about them. Once you are done, you will feel amazing. It is my version of a mental cleanse. Take something sad or angry and challenge yourself to end on a happy note involving the same situation.

When you have these conversations outside, in the sun, walking or doing something active, you will be amazed at how it makes you feel. The winter makes it much harder to let things out or have the ability to move past something due to the effect Vitamin D has on your body and mind. Because it is cold outside, we tend to just sit in the house and dwell on thing. This is NOT good. So take action. Do not let Old Man Winter get the best of you!

With Spring time comes hope, new life, a fresh start. Take time with a loved one and try talking about things you have kept hidden inside during the “Gray Season” and let the sunshine be the thing that warms your tears and turn them into laughs of love.

Take time to “unplug” and do a mental cleanse. Because without it, things will continue to hold you back, not allowing you to enjoy the amazing things that are ahead of you….

Love and Blessings,

Deanna

Company Coming!

When I posted this week about my blog coming back, I was super excited and ready to get started. But I completely forgot company was coming and I was nowhere near ready to have people over. It was cleaning, cleaning and more cleaning. And where in the world do all the socks go? Seriously, that has to be the most frustrating thing about being married. The missing sock!

But anyway, rant over. I began cleaning, grocery shopping and getting so excited about our special guest, I forgot to write the other day. Sorry! We had an amazing time with him and I learned so much about opera. Oh, did I mention he is a trained opera singer? WOW!  I did film while he sang at church and I am in the process of editing and getting that ready for all of you. I hope you love it as much as we did. It might take me a day or two to get  uploaded, but a sneak peek will be posted here. So keep checking!

Here is the sneak peek link! https://youtu.be/vmmE_zb4_rE 

You can also follow me on twitter and Facebook to get updates when the editing is complete. Make sure to leave me comments below! I love responding to comments and questions. It is my favorite!

Happy Sunday!

#Live2Inspire1 Is Back!

Since my last post of getting married, my world drastically changed. This last year and a half has been the most exciting, stressful, fun-loved, anxious and completely AWESOME time of my life. And to be 100% honest, I forgot that I had started a blog until I began to feel like I had made big strides past my surgery. “Surgery?”,  you might ask. Well, if you follow me on Facebook, Instagram, Twitter… (and if you don’t, why not?!) then you know I had my tonsils out last April; April 2014. Yes, just a short few months after I got married in October of 2013. Since then, it has been recovering, working, learning, lose of loved ones, becoming a Pastor’s wife, sister’s wedding, becoming a business owner and braces! Teeth braces that is….

New Header Photo From Last Year’s Events!

With all the best of intentions, I began this blog to document and share my adventures as a newly married woman. It could be anything from advice, cooking, Pastor’s wife experiences, young professional inspiration, struggles of a small business, Aspiring American Sign Language Interpreters, Working with the Deaf Community, marketing & advertising mistakes and overall living to inspire one person in whatever way God had planned for me. Now that things have started to slow down, I want to bring this blog back to life! Please share, comment, follow and join me on this wonderful road ahead. Tomorrow, I will start filling you in on exactly “what” has been going on since my last post. See you then!

Check-In

Good morning to all! You have probably been asking “where have you been?” Well, I have had an amazing  life event happen and the love of my life and I am getting MARRIED! He popped the big question May 14th and it has been nonstop since. I could not be happier. More posts to come and excited to see what God has in store for us!
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Inspirational Quote for Sunday

“Not every day is going to offer us a chance to save somebody’s life, but every day offers us an opportunity to affect one.” -unknown

You have probably heard the phrase “pay it forward”. It is a wonderful act of kindness and a neat way to make someone’s day. What you may not know is, this act has been going on way before it became a tagline. It has been going on since the beginning of time. However, you did not hear about it as often because we did not have social media, news was only shown in your home town and the World was round. (This is a reference to a book “The World is Flat”)

The other thing about this act of kindness that has changed is, it was done discretely, without drawing attention to their self and normally without being seen. It was a personal sacrifice to help someone in need or someone who was struggling.

Now, I am not saying that the “pay it forward” in a drive-thru is not a great thing; It is. But the act of “paying it forward” is more than a monetary value.

Challenge yourself this week, to step out of your comfort zone. Try an act of kindness, that is more than buying someone’s meal, when they are already in line to pay.

Lets build our community outreach beyond our Drive-thru ministries. Let this be the starting point. The possibilities are endless. Use your imagination and see where we can grow from there.

God gave the ultimate gift of Paying it forward with giving us his son, Jesus Christ, to die for our sins.

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