Dysautonomia Sucks!!

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

Sunday, October 3, 2010

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"


  1. Awesome quote Kayla and so true. I hope Dr Moore says the same thing to me! I know exactly how you felt, cause im there now...doctor after doctor with no help...it is a trying journey!

  2. I was diagnosed with POTS in October of last year and I agree 100% with your post. So many people take things for granted. Of course you don't really plan for something like this to happen..but when it does, it really makes you appreciate all the little things that normal healthy people don't think twice about. As frustrating as dealing with health issues can be, I do believe that there's a reason for everything and somehow things will turn out for the best in the end..

    This is a great blog so far and I'm looking forward to reading more. :)

  3. Thank you Cyndi. I hope Dr. Moore can help you also.

    Nikki: I'm glad you like my blog. I dont get alot of time to post but try to post as often as I can. I get so tired of people who judge because they dont care about peoples feelings and dont want to take the time to listen. If you have facebook then add me on it. Its under Kayla Fugatt from Pell City, AL