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Dear Dopa Responsive Dystonia: Why are you so difficult to diagnose? Why do all of your symptoms mimmic Cerebral Palsy? Why do few doctors know what you are, yet your so easy to treat? Why did you challenge my everyday living for 33 years, when a little pill could ease all my pain and make it possible for me to enjoy every day activities? Why did you think you could take over my life? You must not have known how strong of a person I really am, because I rarely let you get the best of me. I hate to tell you this, DRD, but I won! Even though I went untreated for three decades, I was able to make friends, go away to college, marry and have children despite the fact that I could barely move my arms or legs to due to the countless hours of spasms, stiffness and cramping through out my body. Not only did you not stop me, but I was able to maintain a positive attitude and be a joyful person throughout this whole ordeal. I’m glad you chose me to live so many years with a diagnosis of Cerebral Palsy, because I’m able to share my story with the world and because of YOU, I’m helping people, both young and old. My past and current experiences create awareness for parents who are now able to appreciate all the mundane tasks simply, because they know that I’m grateful for all I can do independently. I LOVE that I can now put clean sheets on a bed, decorate my kids birthday cakes, cook meals every night and drive my children to all their activities. Yes, it keeps me busy and can be stressful at times, but because of YOU and my “miracle drug”, I can do it all with a smile plastered across my face. Dopa Responsive Dystonia, you may have tried to steal happiness from my life, but what you have really done is helped me realize how wonderful the gift of mobility really is. And for that, I thank you! Check out this posting on the Mighty along with others: http://themighty.com/2015/03/i-lived-with-a-misdiagnosis-for-33-years-heres-why-i-wouldnt-trade-my-experiences/
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My guess is that no one out there really enjoys going to the doctor and I'm no different. I have been battling a horrible cold for nearly two weeks, but was pretty sure it was turning into a sinus infection last week. I knew I should have gone to the doctor to get it checked out, but with all my experiences with doctors, I dreaded it. My fear when going to see a new doctor is that I will be told, "this is just in your head." Yes, I have a fever and I feel like my head is going to explode, but I've heard this line before and I don't ever want to hear those words again.
About 10 years ago, I was being seen being seen by a neurologist who was over seeing my Bachlphen pump. Under his care, I went down hill faster that I thought possible. My independence was ripped away from me. I couldn't walk anywhere without assistance and began to actually become nervous to leave my house, even with the help of a family member or friend. When I expressed my feelings to the neurologist his response was blunt, "This is all in your head." And because I trusted him, I believed him. Sad, but true. Luckily, my husband and mom didn't think he was right and brought me to a new doctor where she listened to every word I said and believed me (which is how I got to where I am today, a correct diagnosis)! Yes, I dread going the doctor and fear being told that I'm crazy, but I had to put those irrational fears to the side this morning and went to urgent care. The physician was very kind and listened to my concerns the way that most doctors do. I need to remember that there are more good doctors out there than bad and go to the doctor sooner than later.  I'm really not sure where the time has gone. How can it be that my baby is 13 today? It feels like yesterday, that I was miserable being pregnant and nervous to give birth.
My spastic muscles made carrying a baby for 9 months extremely difficult. I had horrible morning sickness that really lasted all day long and my walking was extremely limited. Plus, Steve had to do nearly everything for me: get me dressed, help me use the bathroom and feed me. My independence was gone, but I'd do it all over again because the result was one of the best gifts that God has ever given me...Winona. Sure, pregnancy was difficult and felt like it would NEVER end, but it's something that not everyone is able to experience, no matter how much they want to. In fact, a friend of my husband has been trying to have a baby, but it just hasn't happened for them. Therefore, they are seeking out someone who is looking for a great family for their child. In fact, they have created a FB page in order to share their story and hopefully find a baby. Please click the button (as well as share) below to read about this wonderful couple who are hoping to adopt. I would love nothing more for them to experience the love that a child can bring to a family. 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 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!!!
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. It's been quite a busy week for me trying to get ready for the holidays. As I told my mom today, I'm feeling overwhelmed for no apparent reason. I am done with my Christmas shopping and it is nearly all wrapped. However, I still have to fill my home with the necessities for my in-laws coming to visit and clean our home which feels impossible with a toddler under foot all day long. In my mind, I know that there isn't a lot to do to get ready, because I can phsyically do more now than ever before. The thing is that my brain hasn't caught up to my capabilities. In my mind, I feel that I need more days than possible to make our home perfect for our family coming to the Twin Cities. Not long ago, I could only do one or two tasks a day before I had to call it quits and rest in my chair. As time passes,. I continue to get stronger and better at everyday chores. I just need to let my brain catch up to the understanding of what I'm able to do. When I begin to get overwhelmed I just think to myself, "it will all get done," and "if it doesn't get done, my family doesn't care. They are more interested in special time spent together than cupboards stocked with festive food." With that being said, I'm going to work hard at being happy with all that I can do this holiday season and be grateful that it will be spent with family. Merry Christmas everyone!  The quality of my life has improved a great deal over the past couple of years. I am slowly learning how to be independent and love trying new things. Even though I love my new life, I know that it isn't perfect and I will always have physical challenges.
While I was doing laundry yesterday, I fell to the floor... hard. I could feel the pain surge from my knees to my back and was grateful that John wasn't underfoot. I quickly got to my feet and brushed off the pain. Hours later, our downstairs neighbor told Steve that there was a loud bang earlier in the day, which resulted in her light fixture falling to the floor. Of course, I was horrified and felt terrible. Falling has always been a part of my life and always will be. Sure, things may be better now that I am on new medication, but the truth is, I will never be like my friends. I'm just glad that I can look in the mirror and be truly happy about the person I turned out to be. This evening I took Sharon to the mall. She was in desperate need of a new pair of athletic shoes. We went from one end of the mall to the other in search of the perfect pair (if you know Sharon you'll understand). It had been a long week for me, but I was thrilled to be running around the mall, at night! Even though we looked in numerous stores, we left the mall empty handed.
Even though I was tired, I thoroughly enjoyed shopping with Sharon tonight. There is no way I could have done that before (especially in the afternoon or evening). Spending this special time with her was a gift. Plus, we did find her some shoes at Famous Footwear. It all worked out!!! |
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