The story of Stephanie
After poor health since a young age, and abnormal issues during my teenage and young adult years, then the heartbreak and struggle that comes with infertility… I was finally diagnosed at age 39 with Familial Partial Lipodystrophy. I had suffered MANY serious health complications, and nearly died from a Pancreatitis and Diabetic Ketoacidosis attack.
Diagnosis brought with it validation, as I knew something was wrong my whole life, but continued to be treated as if it was all in my head (Hypochondriac) or as if I was a non-compliant patient in regards to the conditions that I was supposed to be able to manage (Diabetes). But that quickly turned to dread when the gravity of the situation sunk in. A deteriorating disease that would have me struggle the rest of my life with sickly health and has no cure (as of yet). The only options… manage the symptoms.
Lipodystrophy has robbed me. In childhood it was the ability to feel as if I were a normal child that wasn’t constantly needing trips to the Doctor and a course of Antibiotics for the numerous infections I always seemed to be contracting (to which I have now developed deadly allergies to 3 full families of). In my teenage years, the hormone fluctuations that added the self-esteem issues in regards to my appearance and mood swings. I didn’t feel or look like all the other girls. In young adulthood it was the chance to realize my dream of becoming a Mother, and see my wonderful Husband become the amazing Father that he would have been. To see the longing on his face when observing other children and know you are the reason for that turmoil is the biggest heartbreak. I was too ill to be considered for adoption. To now, mid-life. I am about to turn 42 (Hubby is 6 months younger), and most days I am bed-ridden, too sick to do most things, just laying there… in diapers to boot after 5 rectal surgeries have left me incontinent. My sugars are constantly soaring and my Gastroparesis makes what most take for granted, the ability of your food to pass through your system, getting proper nutrition almost impossible.
It hasn’t only robbed me. It’s robbed my Husband and extended family too. At this stage in our lives we should be enjoying the children we couldn’t have (he’s an only child and that has robbed the in-laws of Grandchildren). We should be travelling. I can barely make a 45 minute car ride. We should be experiencing outings and social engagements with friends. Instead, my Husband spends all of his non-working hours looking after me, taking me to my numerous appointments, doing ALL of the household chores, running all of our errands. And that leaves him too exhausted to do much more than lay on the couch and get a small fraction of time to himself, watching a bit of tv. We’re in our 40’s, living life as if we are in our 80’s or 90’s.
The biggest blow though… is that I will be robbed of a full future. My body feels as if it is deteriorating so quickly, and we are told that I will have a much shorter lifespan than the average person. My Husband will become a Widow, and I grieve for him.
Lipodystrophy is a Thief. And I am just one of it’s victims.