Faith

When I started this blog I never dreamed how many people it would reach. I can’t count how many times I have been contacted by people around the world, both patients and caregivers, who are going through similar things with MG. Patients who are struggling looking for that magic potion to help them be able to live the life they once lived; caregivers who are reaching for anything to help their loved one… we all have that same connection…Myasthenia Gravis. This is a connection none of us could have ever imagined having, yet here we are.

Gary met with his neuromuscular doctor yesterday. I sat and watched while they first checked his vision by by having him stare at a pen in various locations to see if he sees double…left yes after 8 seconds, right immediately yes, toward the ceiling yes. I then watch them test his strength. They hold his arms, head, legs, feet and tell him to hold still and don’t let them move them. They then have him walk the hall a short distance with his portable chair…the result: out of breath and wobbly. A discussion about his daily life begins…using non-invasive ventilator throughout the day due to difficulty breathing, some choking when eating, using his portable chair more due to muscle weakness, extreme fatigue… he’s not as bad as when diagnosed but definitely not as good as before. We then discussed options. While Vyvgart has helped some, it has not allowed him to lower prednisone and certainly hasn’t gotten him the results we have been hoping for. He will go another round with Vyvgart and two weeks after, blood results allowing, he will begin Rituxamab. Needless to say we will be investigating this drug today. He will continue to remain on current dose of Prednisone and Mestinon.

We did receive a call this morning about the portable non-invasive ventilator. Fingers crossed all goes through with insurance. We are so excited not only about the help it will provide but also the freedom. Gary would be able to use it while he works, travels, and simply walking around the house. It’s called Life2000. Check it out! 🙂

I have to admit it was difficult checking off all the treatments he has tried so far while looking for something that will give him relief. However, I read something recently that rings true:

“The Bible teaches us that life, by its very nature, will not always be an easy journey. Although our existence contains immense joy, love and goodness, it is also filled with trials and tribulations. It is in these challenges that our strength and faith are tested. Remember, the God who is with us during the storm is the same God who has the power to calm the storm.

God, in His infinite love, has not promised us an easy life, rather He has assured us that He will be with us every step of the way. Picture this: A potter is making a beautiful pot out of clay. We are the soil, and the potter is God. Clay withstands pressure and heat, it takes a beautiful shape. Likewise, the hardships of our lives shape us, refining our spirit and character.

The Bible uses the metaphor of refining gold to illustrate the process of growth through adversity. As gold is tested and refined by fire, so we are prepared by the struggles we face. The heat of life’s difficulties does not come to destroy us but to refine and perfect us.

In difficult times, God’s comforting presence is like a guiding light in a dark night, leading us to the dawn of hope. When we stumble in life, He extends His hand to help us up.

We must trust him, because he guides us through the maze of life, always pointing to hope and love.”

We certainly have faith and know without a doubt God is in control. Gary often says that in comparison to what so many other people are going through,

he is indeed blessed. ❤