| ABOUT ME |
| I was born in 1966 one month early. I had several obstacles when I was born including right hip displacement, longer right leg, broken arm, jaundice, born feet first and being stillborn.I have conquered all of these with the help of physical therapy & surgeries as well as loving support from my family. I suppose I wasn't ready to leave this place which is why I'm here today. I was diagnosed at age 6 with a muscle biopsy but not before being misdiagnosed many times with Polio, Multiple Sclerosis, Cerebral Palsy.....just to name a few. Finally I was correctly diagnosed with Central Core Disease at Stanford University in San Francisco, California. Growing up was filled with the usual childhood things but mine included time in the hospital and lots of being made fun of due to the way I walked. I remember being imitated due to my walk or my run (which was actually a waddle). I would go home crying my heart out and wondering why this was happening. I didn't feel different. I didn't know any different. For me, this waddle was normal. I had friends in grade school that would defend me. Especially one of my best friends who I referred to as my bodyguard. She would chase these kids and beat them up. She even chased the boys into the boys restroom and make them cry. Thank you, Shelia Judge.!!!!! If people would stare at me or ask what was wrong I would get so upset. What do you mean? What is wrong? Nothing is wrong with me. I would cry and get so angry. Not because of the MD but because people saw me as different and if they would ask about what was wrong I thought they were going to make fun of me as everyone else did. Most of the time this wasn't the case. When I became an adult this changed. I finally didn't mind showing my scars. I was OK with wearing shorts. If someone would ask what was wrong....I would just tell them. It was OK. This is who I am and I embrace this. There are still times when people are rude. One time I remember.....I was in high school and walking to ROP (after school work program to earn more credits) after my classes to start work. This was about a two-block walk but for me two blocks is very difficult. So, by the time I go to Sears I walked through and this man turned around and looked and me and began to laugh. He says to his daughter who was about 6 years old, "Look at her!! Look how funny she walks!!!".He said this to his daughter!!!! I was shocked! I gave him a few choice words and continued on my way.....holding back the tears. Sometimes I think adults can be more cruel than kids. Kids will be kids but adults should know better. I don't make it a point to come right out and tell someone I have MD. I've told people who had been my so-called friends and I've had some of them actually turn around and walk away. Not one word.....just gone!! Sometimes I think I should just come right out as I meet someone and say, "Nice to meet you. I have CCD. Bye!!" Then I think, NO!! They are going to get to know me for me. Not for my disease. The disease is a part of me, true. But there is more to me than that and they are going to find that out. But still, do I want to waste my time?? What a dilemma!! So, now I just wait to tell people, most of the time unless they ask right away about my waddle walk. Then I tell them everything. I have three younger brothers of whom one of them has some of the same symptoms as I do but have never been officially diagnosed since we were not raised together. Speaking of symptoms....... |
| Some of my symptoms include...... Never been able to run or jump, continued difficulty with stairs, recently developing great muscle, nerve, joint pain. I use to be able to get up from being on the floor but not it's impossible unless I have a couch to crawl onto and then I can stand on my own two feet. I don't really recall having pain as a child unless it had something to do with a surgery or procedure. Not much helps for the pain. I have taken Neurontin since 1998 for nerve pain and it does help but doesn't take it away. I was also taking Elavil for my nerve pain and that's about as effective as Neurontin for me. I am now taking Pamelor which is about as effective as the previuos two meds but the good thing is Pamelor doesn't cause drowsiness. |
| I stopped taking Neurontin during the winter on 2004 due to the possibility this medicine was causing my excessive sleepiness. Well, now the Elavil is making just as tired during the day. However, I have recently read that many forms of MD will cause great sleepiness. Even if two people have the same form of MD, one may be so tired all of the time and hardly able to function while the other is full of energy throughout the day. One may be able to work full-time and have an active life while the other can no longer work and spends most of their time at home resting. Two people, same form of MD, two different symptoms. This makes so many things clear now for me. I remember always wanting to sleep when I was younger....even into early adulthood. I remember thinking to myself, "How am I going to do this (work) for the rest of my life? I am so tired and it's so difficult for me get wake in the morning. I'm just so tired." Now, it all makes sense and I don't feel like I was just lazy. In 1994 I stopped working due to pain and fatigue. Since then I have filled my time with my childhood dream.......painting!! As long as I have no pain and fatigue I am able to paint. I have a love for Polynesia that I developed after a 3-generation trip with my mom and grandma in 1994 to Hawaii. I instantly fell in love and Polynesia has been my main subject matter in my art. The "Aloha Spirit" consumed me and has been a part of my life ever since. I love everything about Hawaii.....the smells, sounds, music, people, food.....the spirit. Check out my art web site located at... www.sereneartistry.com |
| Well, that's a little something about me.Be sure to stop back from time to time for updates. I'm sure I've forgotten to add some things. And be sure to stop by my support group located at http://health.groups.yahoo.com/group/centralcoredisease |
| Thanks for stopping by!! |
| Have a beautiful day! Jessie *:-) |
 |
 |
 |