Shawila

Hi everyone, I need to ask a question, and not sure if anyone can help. My Primary Physician wants to send me to New York City to see a specialist for my Diagnosis of Primary Dysautonomai with Autonomic Neuropathy. I also have violent episodes of increased Blood Pressure and heart rate. My husband and I are facing losing are medical insurance since he may be laid off soon from Kodak. The reality is that we may be faced with no medical insurance. If this happens, I will not be able to continue seeing anyone, let a lone any Doctor in New York City. Also, I don't know how we will be able to finance a trip to New York City in the first place. I don't even know where to start, if there is support for this or not. I thought maybe I would start here, to see if anyone can offer any suggestions on the situation. Thank you, Lori

Danelle, I can relate to your feeling of having a bad day, and the concern to be able to function on a Daily basis at work. Almost two years ago, I became ill. I went on Short Term Disability and eventually that ran out. I had no other choice but to find something I could do that brought in some income. I was working as an Ophthalmic Assitant for and Opthalmologist at the time. We did a lot of running around, moving, bending, lifting patients, etc... I was having problems with numbness, weakness, loss of muscle coordination, dizziness, Heart Palpitations and sharp increases in my BP. I just couldn't continue. I was fortunate to have other skills and a Degree in the Computer Science field. I found a job working for the Town as Deputy Town Clerk, part-time (4 hours a day) and 5 days a week. I am also fortunate to have an Employer that really understands my condition, and what happens to me when I am ill. There have been days that I have had to call in. Thankfully the job I have has a lot of exceptions and a understanding Boss. It has given me some reassurance that I am still able to do something, one moment at a time even when I don't feel well. Working in the Health Field is not easy work. A lot of hard work both physically and emotionally. I just couldn't do it anymore. If you believe you need to apply for disability, go for it. To walk in your shoes, "Is to judge." Only the person themeselves can make that final decision and support is with you no matter what you decide. I appreciate all of your support here. It is nice to know others feel and can relate to each other with such a baffeling condition. As much as I hate haveing this, there has to be a positive in it. One thing I can tell you that has changed me, is knowing how important family, friends, and loved ones are in my life today. With care, Lori

Hi everyone, I really want to thank everyone for all the support and replies that I have recieved from each and everyone of you. I have told a few of my close friends and family members about this site where there are others that can relate to what I am going through. They are glad for me. It is nice to know that I am not alone and that we are all here for each other. My spirits have been lifted emotionally just in the past few days knowing that others understand and care. Take care, Lori

SallyAnn, Jessica and Paige, Thank you so much for your replies to my post. It is nice to talk with others that truly understand what this is like. I could relate so much in so many ways to your post and am so grateful that somehow I stumbled upon this site. I will be visiting regularly. Thanks again, Lori

Hi, I am new to this Forum. I was diagnosed in Febuary with Dysautonomia. It has been a long road with many mis-diagnosis and incompetent medical physicians. Beginning of January I found a new Physician out of a University Hospital that is now helping me with this condition and directing me for the right care. I have one more Specialist to see and then he is sending me to New York City to see someone. He now is calling my condition Primary Dysautonomia and the Renal Physician stated that I am haveing autonomic Neuropathy along with this. I just cannot believe the multitude of symptoms I experience on a day to day basis with this condition. It sounds crazy, but it is like my whole entire body is failing. I am seeing a multitude of Dr's, trying to work, have some normalcy in life, without complaining too much. Some days I just want to curl up and hide, because I feel so bad. I try not to give in, but this is getting depressing. I am only 34 years old and two years ago, I didn't have anything wrong with me at all. Perfectly healthy and running off to the races. Every day I try to ignore what is happening to me, but the reality is, it is what it is and somehow, someway I have to accept it and try to live a normal life. I am just really frustrated and depressed and could use some help. Thank you, Lori