I thought I would share what it looks like to live a life with MD in pictures. Often times pictures online can give a false outlook on the realities of the disease. People with MD just desperately want to look and feel normal so we fight against all of the equipment and things that are necessary and helpful to get us through the day.
A picture like the one below at a dear friends wedding can appear to look as though I'm full of energy and able to get around effortlessly but what you don't realize is that, my wheel chair and my husband are a few feet away, and I'm resting in between each shot. I went home before the reception to put my breathing machine on and by the end of this beautiful day I was in a recliner at the reception and every part of my body was sore, my husband carried me to the car, carried me up a flight of stairs, undressed me and put me to bed. Thats the reality behind this picture.
-Full leg braces(KAFO)
-Mid calf AFO braces
-a cane to help with balance loss
-Hand controls to be able to drive when your feet and legs are not strong enough
-cough assist machines for both Noah and I to assist with breathing weakness. We do this together each day
-wheel chair for longer distance help due to weak leg and feet muscles
-lots of breathing tests
The bottom collage shows the following:
-bi-pap machine use to assist with breathing and poor oxygen
- Transplant statuses due to cardiomyopathy a symptom of MD. This picture also represents the rollercoaster of emotions and ups and downs in health
-Echo's and lots of doctor visits
- The one with Jason on the microphone represents opportunities to share our story
-The building of relationships with doctors and the opportunity to teach and learn about this rare form of MD
- The daily medications
Then there is the multitude of things you just can't get a picture of. The swallowing weakness that keeps you from eating certain foods and tires you out just to chew. The divets in your spine, loss of all body fat, and size of your wrists that make you look anorexic. The helpers that come each week, to help make dinner, and do laundry. Family who does all the grocery shopping, errand running, and driving to doctor apts. The husband and kids who grab stuff off the floor that I can't bend to get, carries things for me, helps me put on my shoes and socks, and carries the bulk of the load of everyday living. The oldest boy who comes home from school so super tired, gets really out of breath, and is exhausted by eating.
It's not always pretty but it's the road the Lord has for us and it's the way he is using our family for his glory. I hope this is all helpful in knowing what living with MD really looks like. As always please feel free to ask any questions and let me know what you would like to see me address on a future blog post :) Thankful for you all.