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. |
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