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Social Media and Empty Couch Syndrome

It will be to no one’s surprise that I love social media. I majored in Marketing and consider it a large player in brand awareness and communication. I think it is a great tool and fun for all ages. I for one, LOVE your messages and comments. It brings so much joy into my life!

I am also a big advocate for knowing  when and where social media has its place.  As Christians what are we doing or not doing, to help those going through tough times in their lives?  Are we using social media as our only source of comfort creating “Empty Couch Syndrome”?

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What is Empty Couch Syndrome? It is a term I created, defining the living environment of someone who is chronically ill/grieving/struggling and social media has taken the place of individuals stopping by to visit them. This amplifies the isolation factor of the person struggling and gives a false sense of due diligence to social media followers.

I am sure you will agree, we ALL fall into the convenance of social media when someone post their need for prayer or a current struggle they are facing. You can “Like, Heart or Sad Face” our empathy with them and comment with “Praying!” in literally .5 seconds.  It is great encouragement!  But can we do more?

This is where I feel, we as Christians, drop the ball. More often than not, it stops there. Do we pick up the phone for them to hear our caring voice? Do we stop by to have a few much-needed laughs with them? Do we follow-up the next week to make sure they are ok? We have forgotten the signficant impact of human interaction during times of struggles.

Christ called us to be there for one another. To love and comfort as he does for us. Lets be the face of God and FILL THOSE COUCHES! Do not let them sit empty! Lets bring warmth into their homes and knock out the cold screen. Lets care for others as we would want to be cared for.

2 Cor 1:4-5 ESV
who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too.

Bring a movie. Bring a smile. Bring a hug that stretches a mile.
Bring a meal. Bring a mug. Bring a shoulder for someone to snug.
Bring a heart with understanding and love,
Because You Have Been Sent From The Great Lord Above.
– By Deanna Steinle

Blessings and love,
Deanna

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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

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.

 

Blog, Running

Lets Get Crazy- Practice and Race Day

July 11, 2016
Today was a great day. I ran the Crazy 8’s Practice Run in preparation for the real Crazy 8’s 8k on Saturday. As I am training for my half marathon I am using smaller races to just have fun  and to push myself. Plus, it does a lot for your body and soul! Seeing my old running group really made this day special.

I have noticed while I was changing into my running shoes today, that I am getting more excited than I used to before a run. I now have the feeling I can keep up again; that I belong with the group. I am starting to regain my confidence on the road. It also has helped my confidence in my physical ability that we have now tested the waters with workouts and understand the limitations of my throat during activities. But the best part is, we have found great solutions for keeping my throat cool and inflammation down during runs or other outdoor activities. I also can, and have used, these tricks in my everyday life. All of these things are “Two Thumbs Way, Way Up! ” in my book!

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If you are a runner, you know that it can be very easy to start a race “too hot”. Meaning, you basically throw out your game plan, your intervals, and what pace you should be running and follow the crowd. This can be a very dangerous thing for someone who is training for a half. Smaller races, like this, gives me the opportunity to overcome my pre-race jitters which can lead to these race errors. I highly recommend it!

Today was proof of that. I did great, but due to the extremely high temperatures, we cut the run short at 4 miles. It really was the best decision. It was not due to anything I did wrong. I kept my intervals, hydrated and stayed within my pace range. It was Marshall calling it and me reluctantly agreeing with him.

Honestly, there was a time I felt like giving up as I made the first loop of the race, before I sent Marshall the text. But I realized that the things that were hurting me, actually had nothing to do with my throat (at this point). It was little things like blisters, heat, bad shoes , my water on my hips got hot. (Which does not help my throat cool down)  And lastly, if my whole purpose behind this blog is to be transparent, then I have to admit to you I was missing Marshall while I was running. He has been training with me this whole time, until this run; he is my rock.

It was weird not having him with me and being surrounded by strangers. People that had no idea what I am working towards or what this race meant to me. This was a milestone!  To get this feeling was a new factor I never thought would be an issue or that would even come up. Before my surgery I had competed in several races and Marshall was there waiting for me at the finish, cheering me on; no big deal, right?  Then I realized, the heat was making me create excuses and one of the biggest issues holding me back I could easily fix, so I sent him the text. We are not in Florida yet. This is a practice run for a training race and November is far off. I do not HAVE to run alone yet.

Marshall and I went forward as a team, exactly what I needed. Then as we crossed a few more intersections we looked at each other and went to a shaded area to escape the blazing sun while we discussed what the best game plan would be. I will admit, I might have shed a few tears while we were sitting there, but I knew “calling it”  was the right thing to do. This was not an actual race, conditions were even dangerous for the seasoned runner and I knew Saturday was my real goal. As a side note, prior to this run, my training has allowed me to achieve longer distances than this, so you can imagine my aggravation and feeling of defeat.

After I got cooled down, realized that it was not just me that was struggling, it was ALL of us, we compromised; ending at 4 miles. My heart sank as we made the choice to turn around,  but those conditions are out of my control. (As Marshall had to keep reminding me until I got it through my stubborn head, ha!) . The heat was just a nightmare. Regardless, it was a great run and I am beyond proud of myself.

July 16, 2016

Seeeee, I told you I could do it!  My race was amazing! I learned a few things on my run that I need to keep in mind for the next one. The biggest adjustments I will have to make is in the clothing department once my running hydration pack gets here. My ice pack would not stay where I needed it to, in the top I was wearing. Right now, my hydration system is on a belt and has become more difficult to use than I initially thought. So, I will be switching to a hydration backpack where I will keep (2) instant ice packs, ID, gummies, phone, my music and a few band aids (just incase).  But this is why you practice and train. You learn what works and what does not before the big day!

Marshall and I ran the last 100 yards together. He had been on the side lines cheering me on the whole time, but he met me at the end and we crossed the line hand in  hand.. What an amazing night!

I plan on doing a “Pack” update once I get all these items narrowed down and weighed. That post will be a lot of fun to write, I can already feel myself getting MORE excited since I just completed my 8k! Until next time, enjoy the pictures below!

Here are my race day pictures!!!

Watch The Starting Line! It is SO cool!

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

Inspirational

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!

Inspirational

#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!