I've been dealing with a bad cold all week and have pretty much taken a vacation from cooking. Because I could hardly hold on to anything without dropping it, we've had pizza, pot pies, corn dogs and I'm sick of it!!
I'm still not back to where I need to be, but since I got a pretty good night of sleep last night, I decided that my family needs a real meal tonight. In just a little bit, we will be sitting down to BBQ spare ribs, baked potatoes, corn bread and apple crisp for dessert.
Since my new diagnosis, I have really enjoyed cooking. I guess that's why it's so difficult for me to sit on the couch when my DRD tells me to. We may be eating well tonight, but I know from past experiences that tomorrow my body will be shot and I'm okay with that. Today, it was more important to me that my husband and kids eat a non processed meal.
I'll just end this post by saying that I never thought I'd be able to cook for my family and find it such a blessing that I can do it with ease, even if that mean a difficult day for tomorrow.
This bitter, Minnesota January is starting to get to me. Or should I say,getting to my knees. We've had sub zero weather for nearly a week and my knees have been in pain. While I was running my errands today, I wasn't sure if I'd be able to check everything off my list. I guess that's where my stubbornness can come in handy. I got what I needed and even forced myself to go to the gym.
Ever since I was 15 years old, lifting weights has made my muscles and joints feel better. That is one thing that has stayed the same since my DRD diagnosis. Keeping active is a necessity for me. The high tomorrow is going to be 0! I have to go to the Y tomorrow. The only dilemma is whether or not I lift weights or join the dance aerobics class in the morning. Either way, my body wins.
I love that feeling of not being able to put a really good book down. This weekend, I read Wonder by R.J. Palacio. If you only have time to read one book this year, I urge you to make it Wonder! This book can teach us to be more understanding, couragous, strong and most importantly, kind.
Growing up, I was kind of like August (the main character). Sure, my face looked normal, but that was about it. If I was standing or walking, I was being stared at. This novel clearly shows what it's like to feel sadness because of the actions others put on us. However, it also shows how family and friendship can help us overcome anything!
I truly feel that Wonder should be read by everyone of all ages. This novel will change how you view others and help you appreciate all the good things in life.
There is one down fall to no longer being in constant spasm (it's equivalent to lifting weights all day): I have gained weight! Sure, I'd rather have my mobility than have a rocking body, but I still want to be fit. I have always been one to lift weights at the gym because it used to be a necessity for me. I had to keep my muscles working so they wouldn't wither away to nothing.
Since my new diagnosis, I still enjoy going to they gym. However, I also enjoy making homemade breads and cake and then eating them! I still have not gotten back to where I want to be since having John and feel like I need to switch up my workout a little bit. So, today I bit the bullet and hauled a friend of mine with me to the YMCA for Dance Aerobics!! Can you picture me doing this????
Let me be honest with you. I have no rhythm and spend more time focusing on keeping in step with the rest of the class that I'm usually about 3 seconds behind everyone else. But I don't care!!! I was doing it. It may not have been pretty and even though I felt sick to my stomach for a couple minutes, I danced for an hour! I must add that I think I had a smile on my face for 90 percent of it and plan on doing it again next week!
So, if you live in the area and want to join me (or want a good laugh), I'll be at the Ridgedale YMCA, Thursday at 9am in Studio A. I'd love to see you there!!!!! If I can do it, you can do it!
You know how all of the fairy tales start out by saying something like not long ago in a far off place? That's how I feel about my entire life!
Today has been a very busy day, yet I decorated Winona's birthday cake without hesitation. Sure, I wasn't able to get a good primary red, but I was able to put hundreds of stars on a cake and magically turn it into a One Direction dessert that any 12 year old would love. But honestly, all that matters to me is that one particular 12 year old loves it, and she does!
This cake may not be perfect, but it was made with not only love, but appreciation for being able to complete a task that I never dreamed possible. When I look at this cake, I can't help but be grateful for the hands that allowed me to complete this craft. However, I can't help but think about the woman I used to be and how she dreamed about the day she could make her daughter a dream cake. I never thought that I would have the capabilities to spend hours making anything for my first born daughter, yet here I am admiring something I created.
To say, I am thankful would be an understatement. Because the tears are on the verge of falling, I can't find the words to express how I feel on this particular evening. All I can say is that I hope I don't ever wake up from this enchanted dream that I now call life.
I just vacuumed my living room (7pm) and I can't help but be grateful. Yes, I'm tired from the day, but I vacuumed at night! That is more than a big deal to me. You see, before my correct diagnosis, I rarely did this household chore because it usually resulted in me falling multiple times, even if I did it in the morning (my physically best time of day). I always say it's the little things in life that are the most important and I'd say that being able to do a chore with ease (at night) is unbelievable! Life is great!!!
I came across this wonderful photograph on Facebook the other day. The woman who wrote this has Cerabal Palsy, which is similar to Spastic Dipligia (my original diagnosis). This photo jumped out at me and brought so many memories rushing back to me in a matter of seconds.
I can honestly say that prior to my diagnosis of DRD, I don't recall a time when I went out in public and wasn't stared at. When I was a little girl and would complain about strangers not taking their eyes off my walking, my mom would quickly remark, "Their just looking because your so cute." Of course, I knew that wasn't the reason, but it made me forget about the gawker, even if for only a moment.
I have no doubt that most of the people who had a hard time taking their eyes off the girl with the spastic walk, were good people. I don't judge you or wish you ill will. I only ask that from this point on, you make a conscious effort to not stare at the adults or children who cannot control their physical limitations. The memories I have will be with me forever, but I'd love for the disabled children nowadays to be able to look back at their childhood and not remember receiving a long, blank stare.
I tried to be independent for as long as I possibly could. Around the age of 30, I got to the point where I couldn't stand long enough to pump gas into my own car. I'd either have Steve or my mom fill my tank.
This evening, Steve was driving my car (with me and the kids in tow) and we needed to get gas. When we stopped at the Holiday Staion, he hopped out of my car and began pumping while emotion filled my heart. I'm not sure how I am no longer the woman I once was. In my old life, I had to plan ahead accordingly. If I wanted to drive myself to a friend house or my parents home, I had to be sure there was enough gas to get me there. Basically, I kept my tank half full so I wouldn't put myself in a bad situation.
Nowadays, I don't give it a thought as to how much gas is in my tank. If I want to go somewhere, I get in my car and go. Being independent is such a luxury and one that I thought was gone forever. I have so much to be thankful for: my husband, Steve and a body that allows me to do what I want (two things that I never thought I'd have).
I am excited that I am getting closer to a completed memoir. I'm currently working on the section where I met Steve and fell in love with him. I think this is the only section of the book that I could read over and over again without growing tired of it. It shouldn't surprise me though. Meeting my husband was by far one the best things that happened to me.
Growing up I assumed that I would never marry and would put my focus on being an awesome aunt. My mom always said that I would, "end up with the nicest guy of all." Here I am at the age of 37, married to the love of my life. I feel blessed that he was able to look past my spastic arms and legs and see the happy, positive woman that I was/am. He always said he liked that I didn't dwell on what I couldn't do.
As I receive help organizing and editing my book, I can't help but be grateful for my entire life. Yes, there were many challenging days; but the days being surrounded by good people, like my husband make up for it. If I had to choose between a new diagnosis and meeting Steve I wouldn't have to think about it. I would choose Steve and the wonderful life he has given me. My physical capabilities are just a small part of who I am and as I've said before,I like me! And I love my husband!!
So, it's cold outside. I live in Minnesota, so when I say cold, I'm referring to sub zero weather with a wind that freezes your face! The Gov of this fine state has called off school for Monday, something that hasn't happened since the mid 90's!
With the snow flying and my body chilled to the bone (after getting groceries), I decided that today was the perfect day to make homemade Potato Corn Chowder and Spaghetti Sauce. These are two things that I have never attempted to make. Oh, and don't worry, I don't plan on serving them together.
I couldn't help but smile as I chopped veggies and measured out spices for nearly two hours. Back in the day, it was all I could do to make Hamburger Helper! Plus, in weather like this, my muscles would become to spastic to do anything other than sit. I love that I enjoy cooking for my family.
Now that my cooking is nearly done, I can get started on the laundry that is waiting for me outside the bedrooms. It is a blessing that I can do what I want, when I want. It's colder than heck outside, but I grateful that it's cozy warm in here.
After living the first 33 years of my life thinking I had Spastic Diplegia, a form of Cerebal Palsey, I was correctly diagnosed with Dopa Responsive Dystonia (DRD). I am on new medication and doing things that I never imagined possible. This has changed the lives of my husband and two daughters. I truly believe that I am living a miracle each and every day. Life can't get any better than this!