Dealing with never knowing..............

I havent wrote on here in a very long time and I'm sorry for that but here I am........taking a shot at it again. Please stick with me as I do not have much time to do this.

As far as the title of this blog "Dealing with never knowing" is exactly what someone who is dealing with any kind of health problem deals with. We have good days and bad days and we never know which day is going to be a good or bad day.

For instance, I am currently on a 30 day heart rate monitor because one day out of nowhere, my heart rate got up almost to 300 and my blood pressure was WAY too high. No warning at all. I felt horrible. I called my Dysautonomia specialist and she said I was on the verge of cardiac arrest and that I needed to get to a hospital or doctors office asap. So instead of paying $300 for an ER visit then I went to my primary physician. She was going to do an EKG and fax the results to my Dys. dr so that she could try to figure out what was going on. Instead my primary doctor tries to tell me its my thyroid and refuses to do the requested EKG. Long story short, after three weeks of waiting test results to be faxed from another doctor and many many phone calls from me and my mom then I had to call the doctors boss. That got a phone call back. They decided to try blood work to see if its my thyroid and the test came back fine and I am still waiting for her to call back to tell me what she's going to do about my high blood pressure. Its been two weeks now......still no phone call.

My Dysautonomia doctor ordered me a 30 heart monitor to try to figure out whats going on with everything. Its a pain in my butt! I am so blistered and raw from these electrodes that I have no skin left. On top of that, I'm also breaking out from the cords to it........I decided to do some research and for some unknown reason the makers of the heart monitor decided to put latex in the cords and give to people who are allergic to latex. Go figure. But as long as this thing finds out whats going on then I'll live.

Back on the subject of the reason behind the title.........

I had not gotten sick (thrown up) in a long time. Well last weekend me and my family went out for the day and that night I got sick on the way home. I had a fever and threw up everything I ate or drink for a week. It was horrible.

Thats one of the lovely things that comes with dealing with a sickness. You can go to bed feeling perfectly fine and then wake up in the middle of the night getting sick. I felt good for alittle while and have only had minor symptoms but then I woke up this morning with bad chest pain and a heart rate of 313. Scared the crap out of me. My heart rate lowered but I've still had the chest pain. But what can I do???  I've just got to deal until the doctor finds out what is going on and how to treat it.

Its 3:23 in the morning now and my meds are kicking in. Its time to go to bed. But the meaning behind this blog title is that we never know whats going to happen from one day to another. Not even one minute to another. Never pass off your symptoms because what you think might be normal might actually be something horrible. So on that thought I'm off to bed. I'm sorry if this got off subject but its a mix between an update and advice. I will try to post tomorrow. Thank you and God Bless!

Just aggravates me........

             "Health is not valued until sickness comes along"

Dysautonomia isnt the only disease out there that people suffer from but it still is one of the worse. It does different things to different people. Doesn't matter if you have the same disease youre still going to have different symptoms. But that does not mean that you have to lie about stuff to get sympathy.

But the part that aggravates me is whenever people take the truth and just twist it around to make everything sound worse. I've been through all the symptoms and stuff of Dysautonomia. Some days I have alot and other days I only have a few. Yes I might post on facebook about "not feeling good" or anything but I'm not going to lie about it. I hate it whenever you talk to someone and they are telling you about them not having alot of symptoms but then you hear them talking to someone else and they start talking about them passing out, throwing up, high blood pressure, weight gain, medication reactions, etc just to get people to give them some sort of sympathy. Give it a break! It honestly pisses me off (sorry for the language). Do not tell someone one thing and then tell someone else another thing. You think that I wont hear you lying about it. I'm not that stupid.

Anyway, off that subject. I just had to vent. I'm sorry if it doesnt make any sense. I'm getting a migraine! I know its been forever since I did a blog entry but its been crazy. I had a friend fly in from Idaho to see my doctor and then her return flight got delayed and blah blah blah. Its hard to think about what to put in a blog whenever you dont feel good. So to my followers.....please stick with me on this. I'm trying my best to blog more because there's so much that I want to say. Its just the fact of feeling good enough to do it.

You Never Know A Good Thing Until Its Gone!

The quote on the picture above is my new favorite quote. Its so true and says alot. Especially for people who suffer from an illness that has no cure. If you think about it (if you are healthy then imagine that you are sick) then you will know what I'm talking about.

Before I got sick then I was having fun and not caring about my health. Then I started getting sick and just thought oh this will go away and I'll be fine. I had stomach pain for a long time and kept going to doctor after doctor just to hear "Oh we dont know what it is". I finally found a doctor who knew said lets test your gallbladder. So we did test after test and they kept coming back normal. Then I noticed a knot in my stomach above my gallbladder. It started turning colors and something was pushing through. The doctor decided to go ahead and take it out. After my surgery then he came in there and informed me that it was my gallbladder but it was not infected and I didnt have stones. Somehow and for some reason my gallbladder had turned to stone and was trying to push its way through my stomach. Thats what the knot was. Go figure. After the surgery I felt so much better. I was thinking I was back to normal with no more sickness. Well I thought wrong. I started passing out and was sick all the time and never felt good. So yet again I went to the doctor and this time after many more tests  he was like "oh you have Dysautonomia". Well I had never heard of it and so the whole way home I was like okay well I'll take some medicine and then I'll be back to normal and healthy again. I got home and we looked it up and I found out it doesnt just "go away". Yeah I can take medicine and its supposed to help but I will aways have it. That sucked! The more I read about it the more I felt scared. I thought it was the worst thing ever. I had gone from a healthy and active person to someone who couldnt go outside due to the heat or couldnt stand up without tipping over. I started taking more meds and then started getting sick. Had to come off of those meds. I was able to take some meds for a few days before getting sick and then other meds I couldnt take at all. Medicine after medicine, doctor after doctor. No one could help. Most doctors I had to explain what Dysautonomia is. I'd go to the emergency room and the diagnosis was panic attack. I went to my original family doctor and was told to see a therapist and all my problems would "disappear". He started refusing to call me in a medicine because he swore it was in my head. I had to change doctors. I went through medications and doctors like a drughead goes through needles!  I was tired of doctors and medications. Three years had passed and I was still trying medicine after medicine. I had decided to make a facebook page for other Dysautonomia sufferers so that maybe we could share ideas to help each other. I didnt think that I would find anyone else with that disease. I had gone so long feeling like I was the only one with it because no one knew about it. I signed in one day and figured I'd check the Dysautonomia page (not expecting to see anything new) well to my surprise I hate over 100 people on there saying that they had the same disease. I felt relief to know that I wasnt alone. I met some very awesome people from it. I also met someone from my state who told me about a doctor here who specializes in Dysautonomia. I went to see that doctor hoping to get some relief. My first appt. with her I was scared of what she's say. Everytime I went to a doctor then they would say that they couldnt help me. I did a tilt test, stress test, echo, and ekg and sat there waiting for the doctor to come in. While I was sitting there I was preparing myself to hear those words "I cant help you". The door opened and the doctor came in and immediately she said "I'm so glad you came to see me. I think I can help you". I cant explain the rush of relief I felt after hearing that. She sat down across from me in a chair and opened the chart and said "but....." I was waiting for her to speak. She said "your test results worry me though". I was thinking well dang I'm worried too! She then said "You have Mitral Valve Prolapse also". I replied with "great something else to add to the list" lol She said she wanted to put me on a beta blocker to see if it would help. I was prepared to react to it and not be able to take it. The only thing it did was messed with my sleep. I couldnt sleep! I called her and she changed beta blockers and I havent reacted to it. Its helped me alot. But just when I was getting better, my panic attacks started and boy were they horrible! She put me on an anti anxiety medicine and that helped the panic attacks. I was doing good. She decided to do a 24hr heart rate monitor. So I walked around with my friend "Fred" for 24 hrs and boy was I glad to see him go! lol She called a few days later with the results and said "you've got a heart arythmia.Your heart rate jumps to over 200 while you arent doing anything so we are going to triple you beta blocker". So far thats the last diagnosis I got from her but I go back in Decemeber.

Thats my story of the past three years with health problems with some things left out. The point of this was to not only tell my story of how I came about being diagnosed with everything but to show that anything can happen to anyone. Like the quote above says "Most people spend their health finding wealth while others spend their wealth finding health". Its true. I spent my days of health having fun and not caring but once I got sick then my eyes opened to a new light. I then saw what other people dont see! Everyone goes through something in life and they move on afterwards. But there are some people out there who go through something every day that they cant just get over and move on. All the stuff I have been through has made me stronger, more passionate about life, and more aware of the things going on around me. To all the other people out there suffering from an illness that you will never get over..........You have my prayers always. Never give up because God has a reason for everyone of us! Even though there are times when we feel like we cant go on, God knows that we can and we will! He never puts us through anything that he knows the cannot handle! To the people out there who arent sick with a permanent illness and who dont pay attention and dont cherish their health and life........I pray that you never have to go through anything like this and I pray that one day you will open your eyes and pay atttention to not only yourself but to others also. Everyone needs to know that life isnt perfect! Something will always go wrong! God bless everyone.

"You Never Know A Good Thing Until Its Gone.....Especialy Your Health"

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.

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.

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!

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.