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This is a beautiful video - Enjoy > I was recently dx with Lyme's disease after going 8 plus years without a dx. I am in the process of changing this website to include a place where others dx with Lyme's disease can come for information and support. Your support is appreciated. Please view the video about Lyme's disease which is posted in the "My interest" section of this page. My Lyme story goes like this. Over 8 years ago I was sitting at my desk at work when suddenly I experienced a hot burning sensation wrapping itself down my leg. Shortly after that I began to have numbness and tingling in all my extremities, muscle twitching, extreme fatigue, muscle cramping, sharp pin like pains shooting in my eyes, ringing in my ears, if I stepped on the brakes of my car too hard and the car would jerk to a stop it would send an electric sensation down my neck and it to my arms. Suddenly I began experiencing confusion, and brain fog. I'd be driving down a familiar street, the light would be green but I'd find myself at a dead stop in the middle of the street only to be jolted out of it by a honking horn. Scary stuff. My emotions became labile. I could cry at the drop of a hat. I started becoming "hypervigilant" .. the phone would ring and I'd bolt out of my seat to get it in 1 second, I was irritable and anxious. Very forgetful. Had to make list after list just to remember things. Was very edgy. The floaters began to drift in front of my eyes almost on a daily basis. I hurt all over. My joints and muscles. My rings didn't fit anymore due to the swelling of my joints. I gained alot of weight due to the depression of not knowing what was wrong. I went to my family doctor initially when all this first appeared. He did a work up for a variety of ailments including Lyme's. The Elisa and Westernblot tests for Lyme's both turned out negative. So next he shippped me off to a neurologist in Philadelphia. The neurologist did the usual poking and prodding. MRI of the brain to check for Multiple Sclerosis, EMG nerve/muscle testing which did show some abnormalites. My reflexes/knee jerks were diminished if not absent. All labs and other tests however came back negative for MS, lupus, cancer blah blah blah... so he just said well mayble you caught a virus and it settled in your nervous system... you may just have to deal with it. Meanwhile being a nurse (not always a good thing) I began to think I really did have MS - I just didn't meet all the criteria yet but someday that is what they would tell me... I kept waiting for that bomb to drop. The anxiety over that was awful. My condition deteriorated. Fell into quite the depression, the chronic fatigue, the fibromyalgia and neurologic symptoms were a daily struggle. Quit my nursing job........... relationships and finances suffered due to all this... later I learned this is a typical thing to happen with people who are dx with chronic Lyme disease. Eventually the anxiety got so bad I found I could not drive on a highway. First they prescribed Prozac and when that didn't work Effexor for the depression and anxiety. Still not much help. Then a friend told me about a traditionally trained doctor who moved into alternative or "Functional Medicine"... I went to him initially for bio-identical hormones........... because there were also those types of issues (later found out Lyme's can screw up the hormones)........ and said to him in my first appt. Well doc I also have this other neurological type problem that no one has been able to figure out over the past 10 years. Lets see if you can solve the puzzle. He questioned me about Lyme and I told him I tested negative twice. Right away he said those tests that get set to the generic local labs are often inaccurate. So I got another Westernblot for Lyme done and he sent it to Igenix labs in California. Guess what BINGO... it was very positive for Lyme's. Since my dx it has been a whirlwind of activity trying to get better after all these years of having this Lyme bacteria in my body. I'm on 2 different oral antibiotics and may be on them 6 months to a year. A whole truckload of supplements. Magnesium, multivits, something to prevent yeast growth. I was happy to finally be dx and begin treatment. But... then it happened the dreaded Herxeimer reaction that most people with Lyme experience.... just as the antibiotics were taking effect and killing those little Lyme buggers... those bacteria couldn't go out easily... they had to die screaming and kicking all the way and as they did they left a lovely little parting gift in my bloodstream... neurotoxins... so I quickly found out... its due to this that you get "worse" before you get better. So its a day by day process. I take my pills, try to eat right to support my immune system........... and hope that a year down the road if not sooner........ I will feel better.............. I have met so so many wonderful friends on myspace who also have Lyme's and it is wonderful to finally know I am not alone and not "crazy after all"................... This is a disease that is misunderstood by the traditional medical community. I've learned it is so very important to have what is called a LLMD "Lyme Literate" doctor................ there is so much education to be done in the medical community. Thanks for your friendship............ and support through this very trying time. Love to you all.Let's see what else can I tell you about me? I am married, mother of a 14 year old boy who is my world. A Registered Nurse, who does not work in a traditional nursing job due to the issues with Lyme's disease. I currently work 2 part time jobs which I absolutely love. During the week I work for a Medical record review company. I travel the greater Philadelphia area visiting doctors offices and hospitals - reviewing medical records for reimbursement issues for various insurance companies. Every other weekend I work for a company from my home as an emergency call center taking calls related to clincial trials for pharmaceutical companies. I am blessed to have found these jobs. I not working for a period of time due to Lyme's and found that mentally - if I don't work....... I suffer. I need to feel productive. What else, I love the beach, going out to dinner and spending time with friends. I have become a bit of a myspace addict unfortunately. I love the idea of meeting new friends from all over the world. I am looking to meet down to earth individuals for friendship and networking. I love to do crafts, read and travel. We have a trailer at Rehoboth which is our home away from home. I love to go there........ so many great memories.Having been kicked in the butt from Lyme's for all these years has given me a greater appreciation of everything in my life. I am finally feeling like I am coming out on the other side of it and am ready to take on life like a race horse coming out of the gate. I am anxious to see what my life will look like and even more so "feel like" a year down the road from now. Everyday I find myself a little stronger both emotionally and physically.Currently I'm making my "bucket list" (have you seen the movie).......... yep I'm going to list all the things I want to do in my life now that Lyme's is loosening its nasty little grip on me. I will post that list here shortly. I'm really looking forward to tackling that list with a vengeance.I'm a people person. Maybe that is why I love myspace a little too much. I surround myself with people and things that give me comfort and strength. I am very choosy as to who I am willing to call a true friend. I am not interested in fakes or frauds. I am only interested in associating with decent honest and ethical people. If you are a good listener and are genuinely interested in my happiness and welfare - then I would love to call you friend. I in turn will be a loyal friend to you. I am very understanding and love to know what makes people the way the are. I feel like I missed my calling in life and should have been a psychologist - I love knowing what makes people tick. I am an avid reader of all books that are of a self help variety and I've been told I am a "natural counselor.As I get older my faith becomes stronger. I am a child of God and believe in God as my higher power and my guiding light. My life has been touched by his miracles and gifts. These events have solidified my faith in him and my gratefulness is never ending.Musings:
Thoughtful Questions...
Which TV family would you like to join? I'm thinking on this one!
Three suitcases or one carry-on? 3 Suitcases or more - of course
What superpower would you want to possess? Why? Invisibility - It would be fun to see and hear what you really are like w/o me around. We all wear social masks - would be good to see friends take them off sometimes.
The movie or the book? Or the Cliffs Notes? Books are always better
If you started a treehouse club and could only invite three members, who would you pick? My dog, My dog and My dog
What was your favorite subject in school? Why English
If you could go back in time and relive one day in your life, which day would you choose and why? Laying on Fort Desoto beach, alone in the sand, hot sun, waves rushing over me. Heaven!
What are your three main goals in life? To be the best mom ever, To help my son have confidence in himself. To be grateful for everything and to deal with the rough spots in life gracefully. Everything has its purpose.
What is your most missed memory? High school marching band trips!
If you could go back in time and change something, what would you change? Losing track of a special friend
What one thing do you want most in this world? I think I have it already.... wonderful family, unconditional love.
How do you want to be remembered when you die? Someone who cared deeply about my family and their wellbeing
What is your proudest moment? Your most disappointing? Proudest moment - the day our sons adoption was final - Most dissapointing - betrayal of a friend
What do you fear most? Being alone
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Cursor by www.Soup-Faerie.ComThe principles listed below are known as "The Four Agreements." They are outlined in Don Miguel Ruiz's book "The Four Agreements" and offer a powerful code of conduct for all our lives. The are so meaningful to me - I am posting them here for all to see. Take them to heart and appy them to your life and teach them to your children - if we all did this - the world would be a much better place.The Four Agreements1. Be Impeccable with Your Word Speak with integrity. Say only what you mean. Avoid using the word to speak against yourself or togossip about others. Use the power of your word in the discussion of truth and love.2. Don't Take Anything Personally Nothing others do is because of you. What others say and do is a projection of their own reality, their own dream. When you are immune to the opinions and actions of others you won't be the victim of needless suffering.3. Don't Make Assumptions Find the courage to ask questions and to express what you really want. Communicate with others as clearly as you can to avoid misunderstandings, sadness, and drama.4. Always Do your Best Your best is ging to change from moment to moment. It will be different when you are healthy as opposed to sick. Under any circumstance, simply do your best, and you will avoid self judgement, self albuse, and regret. jpg border=0>
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