Blog, Inspirational

Why Fall Is The Light At The End Of My Tunnel…..

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For YEARS my parents have always called me their “little ice-cube”.  We have a running joke in my family, from the time I was shivering at Disney World in Orlando, Florida during one of the hottest days of Summer. Disclaimer: The sun was setting, but to my family, completely irrelevant. HA!

In the last 6 months, that is basically out the window. If fact, when I tell someone in my family I am cold, they respond with “Great!” Or my extremely empathic husband responds in the most loving way,  ” Make it colder! ”

Humidity, high temperatures, stagnate air are very dangerous  for gMG*. If you have read my ICE To The Rescue! post, you have a clear picture just how dangerous it can get and how ice plays a major role in maintaining a safe enviorment in warmer weather.

My body chemistry has completely changed due to treatment. I tend to run warm natured. I am hardly ever cold; to be honest it is kind of frustrating. Reason being, the colder I am, the better behaved my symptoms are. So why did it have to change? It would have been much easier if I stayed cold natured. Right?!

With Summer coming to an end, Fall quickly approaching, I can’t sleep with the building excitement of the much-needed break (from the heat) coming my way!  A list is running through my mind of all the wonderful things I get to do this time of year. It is basically a triple gift!
1. A Break From The Heat
2. Holidays
3. Outings with Friends and Family

I think, that is what made summer so difficult. This year, I had to cancel much more frequently or stay inside, while everyone else played under the bright blue sky and golden rays. Not being there broke my heart. Especially if it was something I consider a “tradition” with certain people.  And let’s be honest, this year has been pretty unbearable with heat. Some weekends just getting out of the house was a challenge. So I feel like I missed a lot.

This Saturday is the “First Day of Autumn”.  I am already counting down the days until my phone rings and it is my Mom and two family friends, asking if I want to stroll around the Holiday Markets. Yes, yes, yes, GIRL TIME! The markets are always inside, it SMELLS like Christmas when you walk through the doors and the shops are AMAZING! Normally there are several around our area, sprinkled throughout the season; so there is always something to look forward too.  It brings so much joy into my life!

Fall brings: Crisp mornings, amber leaves, cooler temperatures, more energy, hopefully shorter recovery time on weekends, Holiday excitement, the ability to see more people, Honeycrisp apples and decorations!

Fall also brings the increased possibility of illness.  Since my immune system is now drastically compromised with how far I am into the medication, I have to be more careful. My doctor gave me a wonderful lecture at my last appointment. #YAY . So if you have been visited by our friend Mr. Ooey Gooey, Green and Boogies, reschedule. I will see you after he leaves. HA!

Summer is full of sunshine, but for MGer’s it can be rather dark. But I see the light at the end of the tunnel. I feel the excitement building as the list of adventures grow and knowing all the people I will see. I have been waiting for this!

Isaiah 40:31 English Standard Version (ESV)

31 but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.

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Blog, Inspirational

The List Of Baby Names That MAY Never Happen…..

baby-names

Before I start this, I wanted to set some ground rules. This is not a “please help me fix this!” post. I welcome ALL support comments and love.  This post is very raw and very personal. We are in the process of taking all the information from my care team and making the most prayerful decision possible. Please know, we are looking at ALL options. I am also not a medical professional; the information below is my understanding from all the information I have received and researched. If you have additional information, please send it to me in a private email deanna.steinle@gmail.com or direct message. Please feel free to share !

This is for all the ladies out there that need to know you are not alone. I want to share for the people that are afraid of judgement and need someone who understands. I do!

If you are like me you have probably dreamt of having a family of your own since you were a little girl. You have secretly built a list of baby names for that special day and continually edit it when a name strikes you. Do not try to deny it, we ALL do it; haha!  You start dating, fall in love, get married and naturally that list starts getting longer. You begin really listening for names you love. Then start crossing off the names you decide you dislike or your siblings/in-laws use them for their children. Definitely crossing it off!

So you can see the list is ever evolving and ever changing. It is a wonderful time in your life and a fun game to play with your spouse.

When I was diagnosed last year, my care team told me that if we wanted to have children then we should go ahead and try; then I could start treatment next year. We had a little bit of time.  The decision shortly got reversed when I had several bad episodes and waiting was no longer an option. I was further along than what we had initially thought. I needed to start treatment sooner than we expected. My heart sank.

Last fall, Marshall and I sat with my doctors and made a very hard decision to start the treatment we were dreading.. We knew by doing so, the side affects and risks would ultimately make some life decisions for us. This was something we did not take lightly. There were tears and more tears…

The treatment is not a medication that you can become pregnant on. This treatment, if it works, is also something I could potentially have to be on the rest of my life. I am pretty sure you have put two and two together by now. So my question was, “can I come off the medication, try to have a family, then go back on it ? ” The look in their eyes said it all.

Even if I come off the medication, delivery alone could put me on a ventilator during and after delivery for a while. I would potentially need several rounds of IVIg (during pregnancy and after delivery)  and the baby could have transient MG for up to 6 months. Therefore the baby would have to be delivered in NICU and monitored very closely; receiving swallowing and breathing assistance. Before baby would even arrive, all ladies have a chance of developing signs of preeclampsia (early signs are fairly common and normally easily treated before it becomes dangerous).  The medication used for preeclampsia, I can’t take due the affects it has on my illness. This would force early delivery at the time of discovery; regardless where you are in the pregnancy.

Do not get me wrong, all or none of these things could happen. There have been some MG’ers that have great pregnancy stories. Then there are several that have stories with some or all the risks above.

So at what point or what would a doctor have to tell me, that would give me peace about coming off the treatment to try? Honestly, I do not know the answer to that.

Gestational carriers and surrogates have been brought up in conversation as well as adoption. But to be honest, the feelings are too raw to even begin to have those conversations. Also MG is a progressive disease, so I will have a better understanding of my progression once I come back from DUKE (hopefully). So this discussion is on hold for now.

Where do we go from here? I am not sure. All I know is I can barely look at the list of names without tear-filled eyes. I see baby outfits for Easter and I have to sit in the car and cry it out with my husband because I know that may never happen for us. Every time someone asks me about children I feel my stomach turn into knots and grab for my husband’s hand and let him take lead to answer, because I just can’t right now.

Today is an emotional day. Today I want to cry and scream from a rooftop. But I know I will have better days. I know I will have ups and downs. For all the ladies out there, regardless of the reason that finds yourself in the same boat, know I love you and I understand.

The feelings I have mentioned in this post only barely scratch the surface of what I am feeling. It is a very complex situation/emotion that has different effects and triggers from all directions of your life.

I would like to do a follow up post on this to answer any questions or add to any thoughts I have as I go through this journey. I know it will not be easy, I know it will be hard.

What I do know? I am loved. I am loved by a loving and gracious God. I am loved by an amazing and strong husband. I am loved by my family, friends and co-workers. And I am loved by THREE amazing fur babies that remind me every day that they chose me  to be their mommy. (If you have animals you know what I mean)

Blessings and love,
Deanna
#Live2Inspire1

Blog, Inspirational

Thank You – The Melting Pot

Thank you to @themeltingpotrestaurants for making this celebration one we will not forget. And to EVERYONE who made this one night get away possible. There are SEVERAL people behind the scenes that made this weekend happen. After last weekend (when I was in the hospital) this was something we both desperately needed. We celebrated one year of being diagnosed and making it through the FIRST year of treatment and learning!!! (My actual diagnosis Anniversary date is April 19 however this was the ONLY weekend we could do this.) We lumped, birthday, valentine’s and anniversary all in one. We laughed, we cried and talked about how thankful we are for all the people in our lives who are there to support us each day. I definitely cried when she brought out my plate and rose. Having had such a low last weekend and not understanding why this was happening; this moment truly embraced the milestone of how far I have come. We were both in shock! It was stunning! I will continue to push everyday, loving everyone around me and thankful for the many blessing God has shown us. #live2inspire1 #RareDisease#myastheniagravis #strongertogether #strongerthanyesterday #pastorswife#pastor #christian #Themeltingpot 

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.

 

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

Movie Reviews

More Than A Slipper | Cinderella Review

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First, let me start off by saying that I am a BIG Disney fan and write this with a classic and modern Disney point of view. At first, I was a big skeptic of the classical princesses and other characters coming to life on the big screen as real people. But was pleasantly surprised with Cinderella. I will do my reviews of the other movies (Alice in Wonderland, Sleeping Beauty etc.) in separate posts.

The reason for the title of my blog post comes specifically from the emphasis the movie placed on Ella’s shoes before she was ever a young lady, before there was a glass slipper. They were blue in color and common. Something she had on every day and used to dance on the feet of her father. The imagery was brilliant.  Those shoes, just like the house the family loved, were her happy memories. She never replaced those  “everyday” shoes until Prince Charming married her and changed her home. He became her new home and a home to build new, happy memories.

The beginning of the movie had a wonderful family feel. The filtering used made it warm and inviting without it seeming “dreamy” or hazy. The costuming and details in and around the home were a great fit. Even when her stepsisters stepped out of the carriage. They had very similar characteristics and costuming as in the original movie, just updated slightly. And more BLING8aaa6f179fdfbcd681f2c88ddbe66c8c

There were a few details that were added that I felt enhanced the storyline  without ruining the experience for a “Classical Cinderella Lover“. These included, her mother and the illness that took her away and the explanation of how Cinderella came to live in the attic. Both of these are not really explained in the original film.

The details that were kept from the original film, I applaud the director and producers for using. It made this Disney heart very happy. The first, were of course, the mice and her barn yard friends. The second, were the bells that hung on the wall that summon Cinderella to her stepmother and stepsisters. Even the terrible singing of stepsister at the piano was included.  Then lastly, the pink color chosen for the dress she wanted to wear for the ball. Yes, it was said in this movie it was her mother’s. In the original, all the animals created it from scratch. I enjoyed the connection of her mother, even if it was not in the original.

Some details to note:

  • The goose that dances in the archway of the home from aerial view
  • Hidden Mickey’s in the glass of the front doors of the house
  • The pumpkin on top of the carriage, the detailing was beautiful and timeless
  • The pumpkin seeds inside the pumpkin as it changes back with Cinderella in it.
  • Cinderella’s dress design for the ball, again similar, but beautifully updated
  • The comedy in the lizards/footmen
  • Ballroom chandeliers – AMAZING , in fact the entire ballroom. It reminded me of a scene from Phantom of the Opera.
  • The climatic effect of the bell ringers. With every stroke of the bell tower, the intensity grew. Seeing it strike the bell sent chills down my arms.
  • Editing catch – when riding the horse, you can see the reins, made out of black braided rope. She tries to hide them with the horse’s hair. But you can see it in a few screens. You will also notice, they really try to never show the horse’s mouth during those scenes to avoid showing the harness or bit. They did an awesome job, just missed it a few seconds. You really have to look for it.

There were two details I did not particularly care for. First, the illness and death of the King. He should have been there for the wedding of his son. In the original film the comedy between the King and the Duke, brought laughter and fun to children of all ages.  Especially when they are bouncing high into the air from the mattress of the King’s bed, arguing like siblings.  Second, the lack of singing/music. I feel if they had added some of the songs (even in rendition) it would have greatly improved a few of the scenes that I felt were dragging.

All in all, I think they did an amazing job on this film and TWO THUMBS way, way up for one of my favorite actresses Helena Bonham Carter. I loved her before, but I love her even more after this film. She was beautiful, quirky and fun and still made every magical moment of ” bibbity bobbity boo” memorable in a new way.

To all my princesses out there! Enjoy, it is a magical  film. pT5b68gqc