Friday, August 11, 2017

What Does the Future Hold?




This past Wednesday, Dominic and I went to the Kroger to do some grocery shopping. He has become very helpful and I continue to use our Kroger outings as educational "field trips." He uses different skills such as problem solving, following directions and one of the most important ones, PATIENCE !! The past couple of times we have gone to Kroger, after we load up the van with our groceries, I have let Dominic take the empty cart back to the cart "corral." He usually walks right back to the van without incident. Not this time. He decided to run into the parking lot. I immediately yelled, "Dominic, get back here! You know better than that!" I was angry, but remained calm after he got in the car and we headed back home. I told him at least three times to never do that again . Hopefully, he "received," my message loud and clear. Will there ever come a day when I don't have to keep my Autism "radar," up??  As he has gotten older, I have been trying to give him more independence, like getting the newspaper and the mail from the boxes at the end of our driveway. It may seem like a small thing, but when he was younger, he would run into the street, not caring if cars were coming. When Dominic was really little, like two or so, he picked up a steak knife from the kitchen counter while I had my back turned for a few seconds and put the entire blade down his throat. He has gone from that to setting the table for us each night. I have worked with him to remember steak knives always have the blades down. Only in the past year, have I let him set the table when steak knives are involved, for good reason! I had someone tell me a while back that I should start looking for a group home/facility for Dominic. He was like 10 or 11 at the time! He turned 13 about three weeks ago and I have been thinking more and more about his future. I have an extra layer of overprotectiveness because Dominic has Epilepsy and he just had a seizure six days ago. It had been almost 8 months. Sigh.  Earlier this year, I had surgery to remove cancer from my leg. Waiting five days to find out if my cancer had spread was incredibly difficult. Thank goodness it hadn't!! I thought A LOT during those five days about Dominic and how he would handle it if I was not going to going to be around. My husband will be 65 in November and I turned 54 about a month ago. We are not young parents. Couples our age have grandchildren Dominic's age!! I know grandparents raising their special needs grandchildren . We may never have an "empty nest," and I am okay with that. Dominic turning 13 seemed to come quick!! In five years, he will be 18 and an adult. He is fascinated with puzzles and putting things together. 

  
Will he be an electrical engineer like my brother? If I think too much about the future then I  miss out on the present. I take each day as it comes and continue to give Dominic more and more chances to become independent. Shouldn't that be my goal?

Friday, August 4, 2017

How Kathy Bates Helped Me Come to Terms With My Lymphedema

I have always admired Kathy Bates for her amazing acting ability, but when I heard her speak out about her experiences with lymphedema recently, it made me admire her even more!!! I found a video from when she was on the show, "The Doctors," where she shared her story about living daily with lymphedema. As I listened to her, I realized many of her experiences were similar to mine and it made me feel a lot less alone.  I noticed swelling in my calf and particularly in my foot shortly after my operation for my Stage 1B Malignant Melanoma in March of this year. As the weeks went by and I continued to recover and slowly return to "normal," I remember thinking to myself, "why is my thigh, knee, calf and foot so swollen?" "The surgical oncologist only removed two lymph nodes from my groin." I decided to make an appointment at the beginning of May at the Melanoma Clinic and discuss the swelling with them in person . The gal I saw there told me I had lymphedema and to order a "compression garment," which I did. I received no guidance on how to use it, when to wear it, etc. The handful of times I did attempt to wear it, the circulation in my ankle was getting cut off and my ankle had a bright red ring around it!! Towards the end of May, I called the Melanoma Clinic again and made another appointment. At that appointment, I was referred to a lymphedema "clinic." There, I was evaluated and started a four week physical therapy program. My left leg was by then, 38 percent larger than my right. I was starting to lose the range of motion in my foot. My treatment was pretty aggressive.  It involved wearing nine total compression bandages for up to 18 hours a day!! 


I also have fibrosis in my foot, which is scar tissue. I finished therapy yesterday and will need to continue wearing my bandages until my custom made compression garment is made and sent to me, which is going to be 2-3 weeks. Before my physical therapy ended, I asked my therapist if my lymphedema is permanent and a life long condition. She told me that it was. I applaud Kathy Bates for using her celebrity status to bring awareness to a little known condition that 10 million people in the United States struggle with. I may not be a celebrity or live in Hollywood, but when I get comments when I am out in public with all my compression bandages on, I use it as an opportunity to educate others about lymphedema!!

I'm Proud of You, Dad

Back at least two months ago, my dad asked me a question. He LOVES history and as much as he's tried to get me interested, I'...