Dysautonomia Sucks!!

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

Saturday, November 20, 2010

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!