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

Advertisements
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.

FF0IV01_thumb_2_zoom_97be746b-f8e1-424a-8a3d-ba984c8ad889
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.

Blog, Inspirational

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

 

Blog, Inspirational

Update June 18th, 2017

19366229_10101840136633806_3989756506287572211_n

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).