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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

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

fall-leaves

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.

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

 

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

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

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).