Dysautonomia Sucks!!

Dysautonomia Sucks!!
This is a picture that I created just to show how I feel about my disease(s).

Friday, September 24, 2010

Judge Not Lest Ye Be Judged

There is nothing fun about being sick. No matter what you do or what meds you take you still feel bad. Everyone gets sick. I know this. Flu, Mono, Dysautonomia, etc. It doesnt matter what it is, everyone is still going to get sick. No one wants to be sick but its something we cant help no matter how hard we try. I got sick four years ago and we just thought it was something simple that was going around and that it would pass. Well it kept on and on and didnt go away. We went from doctor to doctor and tried medicine after medicine. Finally a doctor diagnosed me with Dysautonomia. We didnt know what it was. Whenever I got home I researched it and was in shock that I could have something like that. I had already been through a cancer scare. I didnt want to go through anything else. I felt so alone. No one knew what it was. Not even my doctors. I got on facebook one day and decided to search to see what (if any) dysautonomia stuff they had on there. And as I figured they didnt have much. So I decided to make me a page on facebook called "find a cure for dysautonomia". Within minutes I had many people joining and telling stories of how they suffer from it. It was so nice to find people who knew what I was going through. Of course I had my family and friends but its nice to know youre not alone in what youre going through and that someone else is dealing with the same thing. Which dont get me wrong. I'm not saying that I'm glad someone else is suffering. I hate it in fact but I know there is always someone there for me to talk to, ask questions, etc. I have my own support group on the computer with 24/7 support. Its great. And everyone knows that once you start going through something like that then you lose friends and sometimes even family. I know because it happened to me. I have even had someone tell me that since I was sick then I'm not a "Christian". I never knew that sickness had anything to do with religion. Its amazing how people judge. It hurts but then again it just shows you who was never a true friend to begin with. So to anyone who has ever loss a friend or family member because of health just remember "sometimes it takes someone leaving your life for someone better to enter it". I have so many things on my mind to talk about but its going to have to wait until tomorrow. I know I havent been posting alot but I'm not always able. I will post as much and as soon as I can.

Wednesday, September 15, 2010

The fight continues..........

Why is it that disability is so hard to get on for people who have real health problems. People can get disability for everything under the sun but I know so many people who have not been able to get on disability because the people dont know about our diseases therefore they are not considered disabiling. I dont think that should matter. Who cares if you know about the disease we suffer from. Its not up to you to decided if its a real disabiling issue or not. You just have to sign the paper. We do so much paperwork just to get disability. Packet after packet of paper and then you get one piece of paper with about thirty words on it saying that you have been denied and if you have a problem with that then call whatever number so you can leave five hundred messages for someone to call you back two weeks later to say there's nothing you can do beside apply again. Who honestly wants to keep doing the paperwork? Is it not bad enough dealing with these diseases and the doctors visits and the medications and stuff now we have to keep fighting people who doesnt care enough to listen. They just want to sit at their desk on the phone asking questions all day just for you to answer them honestly and then get a kick in the face. I filled out papers online for disability, got more papers in the mail, got two phone calls, got two more packets in the mail and have been told that I should have three more packets in the mail tomorrow. Every packet asks the same question and is mailed to the same place!!! How many times do I need to answer these questions. I feel bad enough already without having to write all day. They probably dont even read all the answers in the packets. Whats the point???? And they ask you "What diseases do you have" and whenever you tell them they reply with "oh okay I've never heard of that one. Are you sure its a real disease." It makes me wanna say "well I sure hope so because at least I know what I'm suffering from!!" I dont like stupid people like that! They are just doing that for a pay check because they can actually work a normal job!!! And they are so rude! Always snapping or raising their voice or cutting you off. Grrr!! I cant stand that. Anyway, off that subject now.....I'm sure there are plenty of people who's had to deal with that also. On a funny note....I called an allergist today because my doctor wanted me to see one. The nurse was setting up my appt. and asked "What are you needing to see an allergist for?" so I replied "my tongue swells and goes numb whenever I eat or drink certain things." I was waiting for her to say okay well your appt date is. But no.....she replies with "oh no honey you need to see an allergist!" Well isnt that who I just called??? Duh! How crazy can people really be? Well I think thats enough complaining for one night. I will post more tomorrow. Its bedtime now. Good night everyone and God Bless.

Thursday, September 9, 2010

Needing to vent

I've been trying to get on disability for awhile now and just cant seem to do it. I am currently in the process of tring again. Well yesterday I called my doctor and asked if I could come by and get my medical records and they said yes and gave me a time. Today I went by there at that time to pick them up and they tell me that I cant pick them up because it takes time to get all my records together and on top of that they tell me that they charge a $5 cover charge and $1 per page for the first 25 pages and then its $.50 per page after the 25 but once I hit 100 pages then I have to pay $5 and $1 per page again. I'm trying to remain calm and am thinking....its going to cost a fortune to get my records from this doctor if I have to pay all that. Why is it that a patient has to pay and arm and a leg for their own personal records yet any doctors office can get them for free?? Whats up with that. And what makes it worse is thats only ONE doctor out of many more doctors, hospitals, clinics, etc. Dont they make enough money off of treatment alone? Seriously?!?! It drives me nuts because the patients who have life long diseases and/or any other kind of prelonged health problem gets treated worse then the people who go in for a scratch! On top of that a friend of mine gave me a link to a website where they talk to you about your disability case and then help you out. I went on their website and saw where it says "We help anyone get disability between the ages of 18 and 85". I got my hopes up thinking that maybe I had finally found someone that could help me and the people call just to tell me that they dont help people my age. Ok well I'm 19yrs old and the last time I checked that was older then 18 but younger then 85. Am I wrong?? They gave me the number to my Social Security Office and told me to discuss my case with them. Well FYI: I have!!! Well, anyway, thats pretty much all that my day consisted of today. Just one let down after the other. But on a good note my doctor finally came through on sending a note to my insurance agency saying that I must remain on my insurance plan so I dont have to worry about having insurance at the moment. Well, I know this isnt much of anything but I'm tired so I'm signing off for the night. I hope everyone has a great day tomorrow/today and stays safe!

Wednesday, September 8, 2010

Just alittle bit about me.....

I am a 19 year old fun loving girl. I have had alot of hard times in life but I have always learned from them. I have had many good times also. I graduated high school when I was 15 yrs old and started college whenever turned 16. I've got an amazing family and great friends. I am the middle child in our family and the only girl. I also have health problems. A few of my health problems are Dysautonomia, Riley Day Syndrome, Mitral Valve Prolapse, Tachycardia, Anxiety with severe panic attacks and within the last few weeks I've been diagnosed with a heart arythmia. Thats why I started this blog so that people can find out about my diseases but can also see that even though I have health problems and there are alot of things I cant do I am not that different from other people. I still try to live my life to the fullest and always try to be there for others no matter what. Well thats alittle about me for right now. More will be posted later. Going to bed. Have a busy doctor filled day tomorrow. Good night all.