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When The Rug Gets Pulled.

Isaiah 40: 30 – 31 ESV
30 Even youths shall faint and be weary,
and young men shall fall exhausted;
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.

Tonight is one of those nights, I am not sure how to get my words together. Marshall and I took a much needed vacation to get away, retreat and process everything we have been going through since my diagnoses and latest appointments. We have had some amazing concurring moments and moments where I feel like my world is falling apart.

Being in my 30’s and suddenly having my legs give out while walking is something I NEVER IMAGINED I would be learning how to handle in my life. Or how to handle the stares from the flight attendant because she can’t believe my face is drooping and can barely understand me because I am slurring my words. I become so red with embarrassment, I want to crawl under my seat.

At this moment, I feel like the rug has been pulled out from under my feet in several aspects of my life.

I say this with certainty that the majority will understand when I say this “It is ok, to not be ok 100 % of the time”. The best, most powerful thing I can do for myself is to recognize and give respect to the changes happening to my body and allow the feelings to come when they come. Giving them time to process and then get back up again.

That DOES NOT mean I give in; it means that I take care of myself when my body is telling me something is wrong. When it tells me to stop and forces me to rest. Marshall has to step in sometimes to make me stop. Because, well you know, I am stubborn. However, he truly understands my drive and the mental struggle I have daily. But when I do not listen, I end up in a wheelchair on vacation and headed back to the room to sleep and let my body recover. I do not get an option when it gets to that point.

So what do I do now, that I feel like the rug has been pulled? Burn it! I did not need that rug anyway! Redecorate. Make changes. Downsize. Redecorate again. How am I doing that? One day at a time. I am working on a Ladies Retreat coming in 2020, I have a few speaking engagements this fall. For the new year I am not sure where it will go from there. These were things all put into motion BEFORE my last set of doctors’ visits. Then we had to have some very hard discussions in those appointments. Honestly, it was not information I wanted to hear. Hence why we went away for a while.

All I know is, God has me. I will fly, I will soar. I will always be looking for his guidance and do everything in my power to fulfill the plan he has for me, to the best of my ability.

I want to share what God has done in my life. I want to shout it from the rooftops. I sometimes feel like a broken record, but I honestly believe that if I can help just one person, it is all worth it. #Live2Inspire1

AMEN!

Next speaking event: Sept. 8th Grace Covenant Church Kingsport, TN










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Change is Hard. Change is Growth

This life is always changing. Change looks different for everyone. Mine is just a little more drastic than most. As it is with anyone with a chronic illness; especially something rare, such as mine.

Sometimes I believe the change in my activity level is the hardest part about MG. The change in my body, my physical appearance; wishing I could work out and get back to were I once was. Other days, I feel like I am missing out with friends and family because of the lack of energy and strength to do something fun with them. Then, I think about how I feel in regards to the dreams I once had. Of certain goals, I wanted to accomplish in life. Change is hard.

Then I wake up, specifically the last two days, and I cant keep my eye open to save my life. I sit in a room with blackout shades, wearing sunglasses, just so I can watch a movie to pass the time. My eyes ache with pain as they try to stay open. Think of this way, when you go to the gym and you are on your last rep. of lifting a weight. The burn, the shaking of trying to keep your arms up to achieve that last point, that’s what it feels like in my eyes. That is full muscle fatigue. That is what happens to MG’ers when they cant get the nerve signal to the muscle.

No, THIS, this is the hardest. It effects everything. It effects me being able to get ready. It effects enjoying these beautiful days we have had, that I feel I have completely missed out on.

But then I take a set back and remember a conversation I had with a lady three days ago. A conversation that reminded me that on days like today, I am STILL GROWING.

I was telling her about my workshop I am building “Resilience is Beautiful”. I was explaining that my new goal is to share my story and to help others in all aspects of life because resilience is NOT a word just associated with someone with medical complications. It is a word that builds meaning for each of us. From marriage, family, finances, work and more specifically our Faith Walk.

I know what I am going through is meant to be shared. That God and I have had NUMEROUS heart to heart conversations about what the future holds for me. Is it a clear picture? No. Does it scare me? Yes. WIll it help others? I believe it will with all my heart.

So I made the decision to step out and start working on this workshop. To put my heart and soul into building sessions that had real meaning, real value, real conversation. I pray about that points the conversations are meant to be built around. I pray about the people that will attend. I pray for the confidence in my research to build something Biblically sound. I have grown.

I have grown in my prayer life. I have grown in my understanding of what spiritual and mental health looks like. I have grown in my understanding that “yes” my life is changing but I am growing with it. God has a plan. He has been pulling at my heart, having very deep conversations with me when I am alone in a room watching a movie with blackout shades. He uses this time, even though they are VERY hard on me, because I am alone and not distracted.

I know today will get better. I know that I will be focusing what energy I have into my workshop and build something, I believe, will have value. That is my prayer.

I am human. I have feelings, struggles, pain, emotions and days that I feel I am at my lowest. But I remember that with these struggles brings moments of clarity and direction. Forcing me to reprioritize my life. And that is exactly what I am doing.

Change is Hard. Change is Growth.

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

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

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

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

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.