Tag: MGStrong

Blog, Inspirational

Four Words That Changed My Life

Deanna Steinle

“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

 

Blog, Inspirational

Update June 18th, 2017

Deanna Steinle

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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).