2young4emptynest

This is a very difficult post to make. Many of you know that I have been dealing with a multitude of unexplained symptoms and health problems. The majority of it being weakness and muscle loss. It has been a frustrating 4 year journey of specialists and tests but, on Friday we may have finally found an answer. After my last EMG, my neurologist finally diagnosed me with polymyositis! Still waiting on a muscle biopsy to confirm. I have decided to chronicle my life with this disease in order to better help others. It’s a rare disease, that is difficult to explain to other people. I still look normal because I haven’t started a course of treatment. To look at me you would never know anything is wrong. The struggle is real though. These are just a few of the hidden challenges I face daily.
- Feeling like every part of my body is heavier. Like gravity is pulling harder on me than anyone else.
- Tripping on a completely flat ground.
- Falling down stairs/ having to go down each step sideways and one step at a time.
- Extremely fatigued
- Not being able to stand up from a toilet seat.
- Tripping on FLAT ground (drop foot)
- Having to cut up my food in super small bites so I don’t choke.
- Not being able to chew my food properly because my face muscles hurt.
- Not being able to see after noon because my eyes are tired and blurry.
- Cannot step out of the pool.
- Cannot get out of a seated position without help.
- Avoiding grocery shopping because it exhausts me.
- Tired ALL the time!
- Don’t even get me started on the GI issues!
If you read this far, I know it was long. Thank you for going on this journey with me. Up next, muscle biopsy to confirm diagnosis and then begin chemo.