Thursday, July 9, 2015

When She Could No Longer Dance

Over Easter Weekend we celebrated my daughter Amelie's Christening. Afterwards we had a luncheon at my parents' home in Asheville. Traditionally at these Boylan gatherings we end up with Van Morrison on the speakers and copious amounts of singing and dancing. My father grabbed my mother to shag/jitterbug as they always do but this time was different. My mother was lost. She just clung to my father and shuffled her feet. It was at this moment he realized his dance partner from the past 40 years no longer knew the steps.

I asked my father's permission to use this photo. It is pure and raw and emotional. This is what he lives with EVERYDAY. It is what my brother and I live with everyday; albeit from afar. This is why I devote so much time to helping the Alzheimer's Association. They are our lifeline. They provide us with support groups, events, networking and message boards. The people I have met through the Alzheimer's Association (and through blogging about this topic) are the most empathetic listeners to our story. 

This will be my fourth year walking to End Alzheimer's in Charlotte. My mother has changed so much since her diagnosis in 2011. I would stay she is Still Barbara, like the movie "Still Alice", but she is not. I know that she is still here with us sometimes but the inner workings of her mind that made her so uniquely her are almost gone. 

I ask that you join me in the fight against Alzheimer's. Every slipped fact or missed detail of my life sends me into panic mode that I will develop this dreaded disease. I don't want my children to go through what I am experiencing. I want to spoil my grandchildren. And I want my husband and I to enjoy our golden years.

My personal page is here. Please consider making a donation or walking with us.

Katharine, Beau and Robin (and all that love BB)

Tuesday, July 7, 2015

I Thought Celiac Disease Was a Joke. I'm an Asshole.

I will begin by admitting I'm an ass. I usually eyeroll the whole "I can't eat gluten" nonsense. I am aware some people have the actual disease and can't for stomach reasons but the sheer amount of people that claimed they have this disease bewilders me. Even the New York Times wrote about it here.

 When Amelie had horrible eczema over the winter and people suggested I cut out dairy I laughed hysterically. Call me selfish and ignorant but that's just how I felt. The joke is really on me b/c my friends that have cut out gluten or dairy look WAY better in a bikini than me. I just love food and hate vegetables so I'm pretty narrow minded when it comes to restrictions in diets. Call me a toddler.

Well a few weeks ago Max developed these red bumps all over. We assumed it was Chiggers (did you know nail polish is NOT the remedy?) and covered him in Calamine lotion. 
By Saturday morning it got so bad that he had to go to the urgent care. I got a call from him while I was at the pool with the kids letting me know he had been diagnosed with either SCABIES or SHINGLES. Ummmm Scabies? What? They said he probably got it from the gym and that we had to coat all the kids in this $80 prescription lotion and wash our entire house. Scabies is just like is a tiny mite that burrows. 

Well 14 loads of laundry and one pissed off mama we were on our way to getting healthy. I made him go to the dermatologist on Monday just to make sure.


The dermatologist laughed his ass off and said that NO, it wasn't Scabies. It was an allergic reaction to something, probably detergent. They took two huge biopsies and sent Max home with the miracle drug prednisone and said to not eat gluten for a week just in case. 

Father's day dinner Max indulged and rewarded himself with a hefty dose of pasta....and three days later this......

The next biopsy showed that Max has Celiac Disease presenting as Dermatitis Herpetiformis . Here is just a snippet of what he is feeling: Intense itching. A burning sensation. Clusters of small blisters that persistently break out on the elbows, knees, buttocks, back, or scalp. These symptoms are the hallmarks of dermatitis herpetiformis (DH), a skin manifestation of celiac disease. DH affects 15 to 25 percent of people with celiac disease, and these people typically have no digestive symptoms of the disease.

Max is a foodie. His father was an Executive Chef and Max learned everything there is to know about cooking from him. He also loves Bourbon...(see Bar)

To say that this diagnosis has wrecked his world is an understatement. I know that sounds overly dramatic to anyone out there battling something more severe, and I apologize, but this is a big adjustment for us.

They now have him on a leprosy medication that makes him feel terrible and the rash still hasn't subsided so he is slowly getting back out in the sun. I have bought a few Gluten free cookbooks from friends and already placed an order for gluten free soy sauce. We are slowly learning!

If anyone has any tips they are gladly appreciated. He also turns the big 40 this Fall and our trip on the Kentucky Bourbon Trail is probably out at this point. Caribbean? Palmetto Bluff? Skiing? 

Nurse K