Blog, Inspirational

Hawaii 2018

This morning I am resting, drinking my coffee and looking back over the last several days. All I can say is “wow”! There are so many things on this trip I have accomplished that a year ago, I would have NEVER been able to do so. In fact, a year ago I was in the hospital receiving my first IVIG infusion due to a massive episode….
 
Making the decision to start treatment last fall was not easy. In fact, it broke my heart, honestly because I think the reality of the situation hit really hard. But I had a very hard conversation with God and I said “Ok, if this is what is ahead of me show me what I can do. Show me that I can inspire people with this disease and let me experience your wonder in all the dreams I once had. Let me accomplish the impossible.”
 
Well, here I am. He has showered me with love, encouragement, amazing products (my ice vest and backpack) to give me the tools I need to accomplish my dreams. It is hard, let me put that out there right now. The pictures make it look easy. I could not do it without my family and my husband checking on me throughout each hike. Making sure I was hydrated, cooled off and carrying extra bags to provide me with medicine when needed and my breathing gauge. I have seen the love of Christ over and over in each of them. I have seen God in the mountains, I have seen him in the flowers, I have felt him in my legs when I thought I couldn’t make it. And I heard his words through communion on the mountain top.
 
I have no idea what adventure I will do next. But I can tell you now, I am not stopping. I have felt more alive in this last two weeks than I have in 5 years. This illness has taken so much from us over this time and I am telling you now, I am taking it BACK! I know it will not be easy, I know there will be challenges, but I also know I have an amazing God behind me tell me ” WE can” . FlexiFreeze Polar Bear Coolers #Live2Isnpire1 #RareDisease #GeneralizedMG #MGStrong

 

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Blog, Inspirational

My Body Is Strong

5 lbs, 10 lbs, the scale keeps going up… As a woman, is this one of the worst feelings in the world. Especially, when all of your life you have been extremely active and kept physical fitness a priority in your life. I look in the mirror and some days I do not recognize myself. My heart breaks. Medically there is a reason, but sometimes even knowing that isn’t enough.

But then, after completing 4 months of this new treatment, I get my blood work back and the one major concern (a particular side effect) we have been keeping our eye on looks wonderful! In that moment, God sends me this amazing thought, “MY BODY IS STRONG!”

What do I mean? 

For years we have been trying to figure out this mystery. To do this, there was and still is, such much my body has to go through.  You can imagine the testing over the years and now the medication and treatments I am currently working through.

  • So much medication, my Pharmacist knows my name!
  • Nuclear Imaging
    • Computed Tomography (CT)
    • Magnetic Resonance Imaging (MRI)
    • Positron Emission Tomography – Computed Tomography (PET/CT)
  • Ultrasounds
  • X-Rays
  • Bottle after bottle of contrast
  • Blood draws
  • Swallow studies
  • Several Surgeries
  • Intravenous Immunoglobulin Therapy (IVIg)

Even after all this, the sheer amount of radiation and medication that has been pushed through my organs and veins… my body is holding its own!! I am still working, coaching swimming, getting out and seeing family and friends, attending events even on days I just want to stay in bed; I still go!

Through it all, I could not be more blessed that my body is a fighter. That no matter what we throw at it, it continues to surprise me as the test results (side effects that we are monitoring) comes back so favorably.

My Body Is Strong!

#Live2Inspire1 #MGStrong #RareDisease #MyastheniaGravis

Blog, Inspirational

What I’ve Learned In 3 Months…

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To say the last three months has been a roller coaster would be an understatement. We began my third treatment option in October; knowing there would a 3- 8 month waiting period to see full benefit.

So here it is, month three and I can honestly say my head is still spinning. Some days I feel like things are going to be “ok” and everything is under control. Then within an hour, I can feel as if the bottom of the world is falling out from under me. As my doctor keeps telling me, this is completely normal.

Due to the way gMG* works, it truly can fluctuate day by day, hour by hour; sometimes by the minute. Making my days, for right now, very unpredictable.  To me, this is the hardest part. Why? Because I have commitments. The way in-which I live my life affects a number of people around me. I have commitments at work, coaching, church, family … all the places my heart is, that is where my commitments are.

When I am not be able to be there, calling last minute having to cancel, I feel, lets so many people down. On top of trying to understand and deal with the changes that are being thrown at me, I have this immense feeling of guilt. It brings me down, emotionally. Which also affects my gMG. It literally makes the transmissions in my nervous system run faster and slows down the communication in my muscles. So either way, I feel like I loose.

Last week, I had a terrible episode that made me have to cancel work, coaching and not attend church. Which began with a trip to my doctor’s office. I was slurring my speech, I could barely lift my arm above my head and both eyes were almost completely shut.
After a long conversation with my doctor I was still in the “safe zone” and did not need to go to the hospital, but we were going to reintroduce another medicine that had not worked before.  If I continue to get worse, he would be up for a half round of  IVIG**. (Thankfully, I do not have to have it right now. Only if my severe episodes become more frequent.)

He believes due to me being on this new treatment, it would allow opportunity for the other medicine, which it did not have prior.  It is strictly to help with symptoms in times of extreme episodes when my ice vest or sleep, does not alleviate weakness. This medicine has nothing to do with suppressing the disease. The two will work together. So far, I have seen some benefit and hope it will continue to provide stability.

What have I learned?
1. I have learned to make my goals smaller and to accept those goals.
2. I have learned that I can’t control what is happening to me. That doesn’t mean I have        to like it. Allow myself to grieve the situation.
3. I am setting four goals for the month of December.
– I want to loose 10 lbs
– I am going to pick a 5k and train for it.
– I am going to blog/vlog more.
– To be easier on myself.
4. My doctors are amazing and have been beyond supportive of me. (I have always known this, I just have to praise them a little on here. I am very blessed.)
5. I have to come to understanding that episodes are going to happen. They aren’t going away. So how do I handle this going forward?
6. I am not giving up. I have said it before and I will say it again. I hope that someone, somewhere will know my story and be inspired. That it helps just one person.                     #Live2Inspire1 will always be my motto.

I know what it feels like to be at my lowest. I know that I will have ups and downs. I know that every day has its challenges and struggles. But I also know I made it through the day. I know that I am making plans and trying each day to concur this, despite medical odds. I want to keep working, I want to keep coaching, I want to get back into shape, I want to run and play with my nieces and nephews like I used too. I want to look my doctors in the eyes and say “I did it.”

*gMG – Generalized Mysathenia Gravis
**IVIg  – Intravenous Immunoglobulin

Blog, Inspirational

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.

 

Running

My Story: Why A Half Marathon?

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As many of you know, the last two years have been nothing short of the greatest obstacle of my life. What was supposed to be a simple routine surgery to remove my tonsils,  turned into 3 surgeries, modified bed rest, months of speech therapy, swallow therapy and physical therapy. Hemorrhaging out as an adult was a risk I was very well-informed about, however, I had to have the surgery. It really was not an option for me to say “no”. Regardless of all the bad, I am still truly thankful that I did it.  I am healthy, happy and loving life. I get stronger everyday.  All because of the amazing team surrounding me.

Now, thanks to my doctors, whom I can’t say enough good things about, I have been released to do this great race and raise money as a St.Jude Hero! A true passion of mine. But many people have asked me “Why? Why a half marathon?”, so I thought I would shed a little light on the subject.

When my husband and I were trying to decide on how we wanted to celebrate overcoming this adventure, I told him I wanted to do something that covered 6 criteria.
– Had to benefit someone else
– Physically challenging
– Fun
– Location : A place we had not been TOGETHER
– Something a year ago, would have been absolutely impossible to accomplish
– But also something that I HAD done prior to my surgery. To prove, I was getting back to “me”.

It was in this 6 criteria, we decided on a half marathon through the St. Jude Hero program. This would allow me to do my fundraiser for the kids, run in a location neither of us have been together, physically challenging and it is going to be a blast!

I was first a St. Jude Hero at the Rock N Roll Half Marathon – Nashville, one year after my little cousin passed away. (You can see my original post HERE). It was emotionally very difficult, I spoke to Aaron every step of every mile. And at times, I am pretty sure he even carried me. This run allowed me to grieve. It was exactly what God had planned for me. It was one of the greatest moments of my life.

When you lose a child in your family, you really do not know how to react or how to process it. But this run and raising money for the children at St. Jude Research Hospital gave me a place to keep his fight alive. We made a difference with every step and in Aaron’s honor and memory. I couldn’t have picked a better way to celebrate him.

The Disney Wine and Dine Half Marathon means just as much to me, if not more. We are raising DOUBLE the amount of money to send to the children!  To be able to make a difference in the lives of these children and their families, truly leaves me speechless. In my first run, I raised enough for 20 families. With this run, it will give assistance to  40 families! I have seen first hand what this money will do. How much it means to them. Especially, in a time when all their focus needs to be on the little lives that are before them, finances should not be a priority or worry. It is ALL taken care of, 100% , because of YOUR donations.

As far as the physical challenge,  I had to do a half marathon. A 5k or even a 10k would not allow the mental and emotional battle to have its peace. That I did it. That I, above all odds, defeated the very thing that tried its best to bring me down. The bar had to be set. I had to put it to a level where I knew I could obtain it, but a distance that also required your body to be trained and conditioned. I would have to truly work for it. So we settled on the half.

When I cross the finish line, I told my husband to be ready to catch me. I will probably be crying with tears of joy, relief, pain and overwhelmed with emotion. I can see it all happening, even as I type this post. That everything I have gone through the last two years was for this. To be a St. Jude Hero, running for Aaron and all the children. To give talks, share my story and help change the lives of others. Reminding everyone, never give up. You never know what God will use your story for.

People often say “it is just a half”, but for me….. it is 20,000 steps I couldn’t take two years ago.

Please support my fundraiser as St. Jude Hero. We are almost there!
http://heroes.stjude.org/DeannaSteinle

 

Inspirational

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