2018 Ohio MG Walk is around the corner! Please join me and my team (Team H.O.P.E) in walking for a cure for Myasthenia Gravis! I have shared quite a bit about my struggles with MG over the past ten years and I would love to have your support. If you can’t make the walk, please consider making a donation to help further research for a cure! To join my walk team and/or make a donation visit join.mgwalk.org/chanelmiller #ohioMGWalk#WalkForACure#ComeWalkWithMe#MGcantstopMe#GodIsGreater#ThisIsCLE#linkinbio
Go-to SNACK! Late night 🌙 midday 🌤 or early morning ⛅️ bananas are my go-to! Healthy carbohydrates, b-vitamins, potassium and fiber; you can’t go wrong. Plus, bananas are said to lower stress! 🍌🍌🍌
What’s your go-to SNACK???
Crossed a major hurdle today, and had a CT scan of my thymus gland to check for any abnormalities. The techs were amazing. They were patient, kind, and accommodating. My Hubs was the best. He made me laugh. He was attentive without hovering. He stood outside and kept saying "I'm right here baby. You're doing fine." ----------------
A little background: The last time I had a CT scan, I went into a crisis, coded, and was in the hospital for a month. That experience left me with severe anxiety. It was so bad that my doctors feared to perform another one, (after another failed attempt), because each time it would cause and flare. ---------------
The CT scan was like a foreboding tunnel of doom to me. And unless you have experienced coding and waking up intubated in ICU, you probably wouldn't understand. I'm glad I had the support I needed for my mental health, and that I have made positive progress so I am physically stronger.
So, after 2 days of IVIG, we endured another round of medical shenanigans this week. He never shirks from this MG journey. He didn't see MG. He knows it. He just saw his wife needed reassurance, and the techs saw it too. They asked questions. They made sure that I knew what was happening and that I was totally comfortable before beginning. Here's a big "yaass" for overcoming fear today! 💪🏾💙❄ #SeeMeNotMG#myastheniagravis#myjourney#iFighton#TheColliers#WifeLife#MGAwareness#MGStrong#MGWarrior#MGCantStopMe#CTScan#ThymusGland#diagnostics#anxiety#conquered#chronicillness#invisibleillness
Preparing to write notes/questions to talk to my neurologist about at my four month appointment tomorrow. I think I have made a slight improvement since my last visit, but at the same time I have felt little things that I haven't felt in awhile. This makes me wonder if something bad is brewing or if it's just "normal". I'm crossing my fingers that I have a good appointment! Wish me luck! 😊 Oh! Swipe to see my super adorable notebook/journal from Target! 🦄💗 Who else can't resist cute notebooks and colorful pens?
Who else here has a roaring sense of humor? 😭🤓 Who else does once they warm up just a bit? (🙋🏼♀️me too).
Anyway, happy Wednesday! Here’s a little treat to try 🙂
Blueberry Smoothie Recipe
- 1 cup blueberries
- 1 cup chopped frozen banana
- 2 cups spinach
- Juice of one lemon
- Liquid until desired consistency (choose from spring or filtered water, almond milk, coconut milk or coconut water)
* For some added calories and protein, add a tablespoon or two of almond butter!
CLC MEMBER FEATURE: At the end of 2003, I began to feel that something was wrong. I was constantly exhausted and I was battling JUST to smile, speak & swallow. We went to different doctors and got a different diagnosis each time. Eventually we realised that it was something more serious and we finally saw a neurologist at the beginning of 2004. She diagnosed me with Myasthenia Gravis within 15 minutes & I was admitted straight away; I was 15.
Over the years I have had countless operations including a thymectomy where my sternum was cut open; I had every medicine known to help treat MG; I had perm caths inserted for plasmapheresis and I’ve undergone chemo & tried all sorts of immunosuppressants.
I was well controlled for 2 years, but then went into full-blown crisis last year & have now been told that my disease has progressed into Refractory Myasthenia Gravis, meaning that it no longer responds to regular treatment. I walk with a cane often, & have to wear a mask to protect myself against bugs & any illness.
But, I will never ever give up! I try to find the good in life & have made it my goal to make at least one person smile each day. There are times when I choke on my food; there are times when I can't speak, dress myself or lift my arms above my head; there are times when I battle to walk & climb up stairs; there are times when I drop something that I’m carrying. I am generally exhausted, but I am holding on to hope that things have to improve!
Thank you so much for this opportunity to share my story! #chronicloveclub
20 29611:54 PM Oct 23, 2017
Today, I summited Mt. Elbert at 14,439
Highest summit in Colorado- 2nd highest mountain in the continental U.S. ... MG, this was for you...
Thank you @SaintMarksHS for the opportunity to speak at the 2018 Senior Leadership Breakfast.
Individuals will reach their full potential as a leader by way of self-fulfillment. When one is self-fulfilled they are content with the person they have become; rather than blinded by chasing the materialistic success that society often shapes. We can reach self-fulfillment by developing patterns of emotion and action that support our mission as leaders. The most powerful mission of a leader is to SERVE. When we serve, we are fulfilled with the euphoria of purpose. In order to serve we need to influence. In order to influence, we need to understand human emotion!
Click the link in my bio. to view the full video from the 2018 Saint Mark’s High School Leadership Breakfast.