Thanksgiving with CREST Syndrome

Thanksgiving tips for those with CREST, specifically if you have the “E”, the “S” and Kid(s) in Tow

These are tips that work for me. What works for me, may not work for everyone. If something doesn’t work for me, often another idea springs from my failure and I go from there. In the interest of saving us both some time, I’ll just share my successes.

I have an ADHD 7 year old, symptoms of CREST such as severe Sclerodactily, Hiatal Hernia and a scarred esophagus. These are a few tricks I use so that my son and I both enjoy large dinners and get-togethers while I stay independent and keep my sanity.

– I make my son’s plate full and give myself small helpings.
Because I have to take small bites, it takes me forever to eat. A large plate for my son keeps him busy and once he’s settled, I can take my time and not hurry. Because I took small servings, I can keep up with the rest of the table. I feel really awkward being the last person to finish. If my son can’t finish what I gave him, I’ll have him give me what he doesn’t want if I’m ready for seconds. (Yes, I will eat from my kid’s plate. Bite me.)

– Stay away from carbonated drinks at the table.
I’m not going to lie. I love Coke and Pepsi. I enjoy caffeine and carbonation in moderation. I am no perfect patient and after nearly 20 years of this, anyone who doesn’t have what they’re not supposed to every now and then is a big fat liar. I usually have my soda before dinner so it’s out of my stomach. (It’s all about the planning babies) At the dinner table, I drink water. It helps me get food down my throat and the lack of bubbles keeps my food from coming back up during the big meal. (Score points from my speech therapist)

-Pay no attention to the “looks” you think you are feeling.
My hands are a mess. My fingers are contracted. When cutting with a regular knife, I drop my silverware regularly. It is never louder to me than when sitting at the table during a holiday meal. That “feeling” of others staring was more my own paranoia than reality. There is so much more going on around the table. I used to just keep my head down and get sucked into feeling I was being stared at. Then one time- I don’t remember when- I just picked up my silverware, moved on. I looked up and realized everyone had not stopped to stare at the freak I felt like. They were talking and having a good time- and I was missing it!

– Try not to get sucked into talking about your health.
People ask us how we are doing because they care. I feel like because I made it to dinner, I’m not dead or dying, so I’m doing great. Ever get those questions from well intentioned relatives about how you are “really” doing? I do. I talk about what I CAN do. If I did something as simple as take a long walk, watched a movie or even did yoga (hey- it happens sometimes). I have discovered the key is a short answer. I try to keep it simple and honest. Not everyone needs to know test results or meds that I am on, it makes even my head spin.

– Stay thankful my friends.

At family gatherings, I see people I sometimes haven’t seen in years. They want to know about me because they care. I have become so accustomed to dealing with others in the medical community; I can make things sound worse than they are. Don’t get me wrong, I do not want to minimize how serious, painful and for lack of a better term, phenomenally “F’ed” up how bad Scleroderma, Sarcoidosis or any other chronic disease is- my point is, it’s chronic. We are all either in the process of learning to adapt or have adapted to living life with a chronic condition. Some call it Chronically Awesome, The Spoonie Life and more. No matter what we call it, it’s ongoing for us every day. I have accepted my family doesn’t see me every day and they are trying to cope with knowing I live with two very serious diseases. I may appear different to them since the last time they saw me. Maybe I gained or lost weight from my meds or my hands have curled more or I walk slower. The short version; they are worried and scared. I used to get so upset when someone would notice something different about me, but I see every day. I have to remember to be be thankful I have a family that does care. I remind myself that everyone is going through something. With the questions I get, I have to remember it’s important to ask my family how they are doing. Not only does it take the subject off of my chronic illnesses and feelings of self consciousness, I love hearing about what’s going on with my family.