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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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Inspirational, Uncategorized

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

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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

Inspirational, Uncategorized

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 

Inspirational, Uncategorized

Waiting on DUKE…

January 10th, 2018 the paperwork was written up by my neurologist and the request was made, we are headed to DUKE Medical.

A couple of things:

1. This Is Not A Bad Thing:
We are going to get several of our questioned answered. Hopefully qualify to get on their “Active Patient List” which would allow me to be considered for trial treatments and research.

2. I Am In A Better Situation Than Most Myasthenics Headed To DUKE:
I tested positive in blood-work, therefore so much workup was done locally, my time with the specialist will be extremely targeted and very efficient (hopefully) .

3. No, I Do Not Know When I am Going:
Once the paperwork is sent out, it could be a week or months before I get a phone call from them. Especially since I am currently undergoing one of the more major treatments.

4. I Cut My Hair!
     Due to my current treatment, my hair is starting to drastically thin and fall out. It should not get super patchy, from my understanding, and I will not lose it completely, but I will see a noticeable difference. This week I believe, has been the hardest as it is starting to come out by the handfuls. So I decided to take control and cut off almost 6 inches !!! I actually really like. I am still adjusting. 26907023_10102073625874496_3852989698692658467_n

Inspirational, Uncategorized

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

Inspirational, Uncategorized

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

Inspirational, Uncategorized

ICE To The Rescue!

(Delayed post. This event happened on Memorial Day. I have been hesitant to share, but feel it is so important for the ongoing research around Refractory Generalized Mysathenia Gravis aka  Refractory gMG)

Yesterday, I was thrown a very hard learning curve and reality check.

Since I have been diagnosed, I have noticed that cooling my core body temperature during Mysathenia Gravis (MG) flares, immediately reduces exacerbated symptoms. The reason I knew to try a cooling vest, was because of my half marathon race, pre-diagnoses.

When I would run, I would start to find it difficult to swallow. Almost like my throat was swelling, but it really wasn’t. Therefore as I trained, I ran with instant breakable ice packs and 3 liters of ice water in a running backpack. It worked beautifully!  I would place the ice packets on my throat and upper spine at miles 7, 9 and 11. It would greatly reduce the “swelling” and control the heat in that area.

Fast forward to diagnoses. We were told I was self treating without realizing what I was doing; not knowing I had MG. My doctors are AMAZED I did not die during the race. It completely goes against everything about the disease. They are so proud of me. However, they told me not to do a half marathon again, haha!

Because of this information and my stubbornness, I was not going to let MG take everything away from me. I wanted to find lifestyle changes that helped me keep a level of normalcy, as long as my disease would allow me to. How could I keep exercising, go on hikes, enjoy being outside and use the information I had learned from my half marathon and the ice?

With that in mind, we found the Flexi Freeze Cooling Vest! We started keeping it with us everywhere! We had no idea if and when it may come in handy.

As of September 4th, 2017, I am singing praises of this cooling vest! We had tried it off and on a round the house. But I never had to use it in what I felt was a true emergency.

Flexi Freeze paid for itself at 3:00pm on that Monday afternoon, when I had my first MG flare away from home with extreme symptoms that almost landed me in the hospital; potentially ending up on a ventilator.

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Once EMS rushed my husband to retrieve the vest from our vehicle and strapped me in it, with in 10 mins, I was 80 % back to my “MG normal”.  This was a game changer for me. The emergency personnel could not belive their eyes.

Here was this young lady, face showing all signs of a serious stroke ,unable to control her mouth and speech starting to slur, legs like jelly, both eyes almost completely closed; then 60 mins goes by and she is walking out the door with her husband to join her parents for dinner. No, that can’t be possible. It was for me!

Now, my ice vest is always by my side. I compare it to an epipen. It is there just incase. It even goes on the airplane with me! My doctors are amazed at the results this vest has provided me and the ability to potentially save my life. This does not work for all MG’ers, but it does for me!

All because I ran a race and told myself I wouldn’t give up! Who knew ice would come to the rescue just a few short months later?

My reality check was this is real and it is dangerous. Up until this point symptoms have been manageable. That is no longer the case and I will begin my new treatment in a week after preliminary blood work.

Inspirational, Uncategorized

Four Words That Changed My Life

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

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

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

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

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

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

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

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

#MGStrong #Live2Inspire1 #MyastheniaGravis #IHaveHeardOfMG

 

Inspirational, Uncategorized

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). 

Inspirational, Uncategorized

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.