**HERE IS MY POST ON WORDPRESS TODAY** HOPE YOU ENJOY - YES I JUST HAD TO VENT. :) Tremors Well today is November 16, 2014 and my sixteen year old daughter Lashell will have had something called Functional Tremors for 3 weeks. They came on just all of a sudden and overnight. She had not felt well in the weeks leading up to this. And only once had she had the shakes (all over) and felt really bad. She even told her Grandmom that she felt like she might have passed out, but she wasnt sure. That was a morning that I had left for work and wasnt home. When she approached me 3 weeks ago her hands were shaking so hard. She laid them and her head on my chest and said, Mommy, make it stop! Heart -wrenching! This thing has turned our world upside down. We have seen countless doctors in Murray, KY and Nashville, Tn. The answers we get seem vague and sort of seems like the doctors give us half answers because they arent sure what she has. She has been told that it is all in the subconscious mind and she doesnt even realize she is doing it. Okay so if she consciously thinks about stopping the tremors, why dont they stop? There is no cure, no medicine that can help and supposedly nothing we can do to help her, other than help her cope. Really? You give Parkinsons Patients meds to help them, why not her? You tell her to take Zoloft but it will take up to four weeks to even see results. Oh, and you tell me that might not work either. So I am going to chance giving my daughter a drug that even you (as her doctor) says may not work. Sounds like a guessing game to me. Do I sound frustrated? Could be because I am. I seen my sixteen year old daughter go from being lively and active to her hands shaking constantly out of control. The tremors are only in her hands. She is an honor roll student that loves school. Now she cant even get herself out of bed in the mornings. She stays VERY TIRED and has continuous headaches. She cant hold on to a pencil to write for more than just a little while. After forcing her hand to steady long enough to write something down, her whole arm starts to hurt making things worse. Her body never stops working. She just stays so tired. Eating, well that is a different story too. Eating with a fork or spoon is challenging. She had one of her favorite meals last night. It was a Bacon Chili Cheeseburger and order of fries. She asked me to cut it up for her. Which I did. But just getting it on the fork and up to her mouth was just too much for her. She finally gave up and just ate the pizza that my sister and I had ordered. She has also learned to put her drinks in glasses with lids and drinks through straws. That way she doesnt splash it all over herself or someone else. Our lives have changed so much and so suddenly. She loves to go out and throw her color guard flag around. She had to miss a State Marching Competition because of all this. She worked all summer long just to get there. It broke our hearts to tell her no. She said she wanted to go just be with the band out of pride and family tradition. The band is her family. And both her brothers have been on the Finals field at the state level and she so wanted to be there. It didnt matter that she wouldnt be on the field with her friends, just so long as she was there. The weather was bad. Calling for snow and very cold. It was just to risky to drive her nearly 5 hours in one direction, just for her to stand out in very bad weather and chance getting sick on top of this. (The band had left the afternoon before.) So at 4:00 am, her dad and I made one of the hardest choicest we had ever made. We kept her home. Now you must understand that it was the first state marching competition that we had missed in eleven years. It wasnt made lightly. As a matter of fact, I think I cried as much as she did. There are other things that have changed too. She is now on what they call home hospital until we can get this under some kind of control. For her, that is just not working either. She is one of those that loves school. Even when a class gives her challenges. Of course, that just gives her even more reason to push harder. She thrives on pushing herself to be the best. I guess I kind of push her too. Maybe I should not have been one to want my kids to be on the honor roll so much. But I do and did. I would tell my kids if a teacher says read the first chapter read two. They tell you at least a two page report, go for at least three. I would say, good grades mean more money for college. So push and push hard. I guess I feel somewhat responsible for what is happening to Lashell now. Maybe I should not have expected her to excel in everything she does. Then again, she kind of does it now without me telling her too. She is also a Young Kids Classroom Teacher at her churchs Caring & Sharing group on Tuesday nights. However, this now has become harder to do. She just doesnt feel up to going as often as she did before. Her head just bothers her too often and her hands just shake too much. And when she is out, people are always asking questions. Or are staring and that just makes her uncomfortable. And she says, Mom, how do I explain something even I dont understand? There are some points that are good in all of this. She and I have become even closer than we already were. We have always been close. We do crazy things together and dress up. She would do my makeup. Even her friends will come over and they practice their techniques on dear old mom. We were together a lot before this all happened. Now we are together even more. We have some true friends that have stepped up and helped us out. And our Christian family has been right there with us the whole time. They keep us looking for the answers and not to give up hope. All of our friends remind us to Pray and to keep the faith. It would be so easy to blame God for all of this. I know He sends us struggles and that He never leaves us. That He never gives us more than we can handle. But sometimes, just sometimes, I feel like I am failing just a little. Hope is what keeps me going Hope, now there is something that I am not sure how to approach. Hope for what? A cure? Acceptance? Understanding? Just what am I (or we) hoping for. Not sure I know that answer any more now than when this all started. A cure would be the best possible outcome. But what if that isnt possible? Am I ready to help my daughter to deal with this the rest of her life? That is a simple answer. YES! But where do we go from here? Acceptance and understanding are much harder for me. I dont accept the answers I have been given I guess because I dont understand . I am not a trained professional, but I am a Mom and my instincts tell me there is something more to this than what they are saying. I guess it is because she is my baby girl. But along with the tremors she has constant headaches. And the constantly being tired. It is like the doctors want to just sweep that part of her symptoms under the table and pretend they arent there. Or that she just isnt having headaches. Or that they are all in her mind. Oh thats right, they are saying all of this is in her mind. NOPE - I REALLY DONT UNDERSTAND! To me it is like her body is screaming for some sort of help and relief. She is NOT depressed (yet). She is a very happy young lady with the whole world at her fingertips. She has her career path and her continuing education path already planned out. Her career in Cosmetology fits her to a Tee as she loves to play with hair and makeup. Fashion is also at the top of the list. She is all girl with a smattering of Tom Boy thrown in for good measure. So doctors and friends forgive me when I say, This just doesnt seem right! Or, Really people, she needs help! Or, No, she cant go back to school yet. She cant even hang on to a pencil. And when I get short with you, please understand it is just that we want answers. Or maybe, just maybe, I am tired. Tired from worry. Tired from being on the phone. Tired of making appointments. Tired of the long drives in crazy traffic. Tired of waiting in doctors waiting rooms and exam rooms. TIRED OF FEELING I STILL DONT HAVE ANSWERS! Yes, I AM TIRED! But I am not tired of taking care of my daughter. I will do that until I am not able to any longer. I will do it gladly. I will hold her when she needs to be held and even when she doesnt. I will stay by her side always. I will let her sleep in my bed and I will not let her be alone. And yet, I will still let her stand on her own and try and make this thing work. She will be independent and stronger than she ever has been. We will make sure she never feels she has failed. If anyone has ever had this happen to their child or themselves please feel free to share what information you have. What worked. What didnt. Or doctors that seemed to know and understand the condition. Or maybe, they thought that you had Functional Tremors to find out is was something totally different. Anything at all will be helpful. If we all work together and study this together, maybe others will find the ordeal a little easier to handle. And remember to keep all those who are sick with some sort of illness in your PRAYERS. THERE IS POWER IN PRAYER!
Posted on: Mon, 17 Nov 2014 01:15:36 +0000