Hi everyone, I am Kimberly and I have myotonic muscular dystrophy. I just turned 42 and went to hell and back in the last 2 years! I had emergency colectomy on June 1st 2020 because of a volvulus caecum and had to remove 2.0 inches of my colon, my ceacum, as well as my appendix because of advanced gangrene! Then that september I had my gallbladder removed by laparoscopic surgery which cause the flesh to separate from my right side ribs, and had a collapsed lung the second night while I was already back home! In January 2021 I had a hysterectomy because of a rare and aggressive utérin cancer! Also removed both of the Fallopian tubes! In late February I was diagnosed again with a rare and dangerous cancer on my left cheek (face) as well as on my back near my spine. I had 3 unsecssefull surgery and finally went for Moh’s surgery to remove all the cancer! I now have a big mass on each of my ovaries and a 5 mm stone stuck in my right upper kidney! All this after my husband of over 20 years happily married had an affair with a old retired lady he met one night at the bar while he was working far away from home. My brother is very I’ll because of muscular dystrophy and so is my mother! The hardest for me is my 13 years old son who was diagnosed at very young age of congenital myotonic muscular dystrophy. He has over 2000 CTG repeats in his DNA! The Dr.’s all keep telling me that I am lucky he can walk, talk skate, swim and ride a bike but the pain and difficulties that he has to go through are very hard on my heart and my mind! I always feel that I am the reason he has to go through all of this. The past year he has lost a lot of muscle mass and I lost lots of wait (was115lbs went down to 84 and now 96) since last surgery i had damage done to my trachea so I have a hard time swallowing and the myotonia appeared over night and is progressing so rapidly I am completely devastated and depressed! My dr suggest I talk with someone so this is why I am here! Any advice would be very helpful!
Best regards to all of you
Kimberly