Dysautonomia Sucks!!

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

Friday, April 12, 2013

New battles ahead.......................

I know, I know......Its been FOREVER since I've posted on here. A lot has happened since the last time I posted. I'll give you all a quick run down of the past events.............

I started having seizures in December of 2011. January of 2012 I went to a neurologist and they found a cyst in the middle of my brain. Also said that I had been having epileptic and non-epileptic seizures. Weird huh? Thats what I thought. Anyway, I am happy to say that as of February 13, 2013 I was exactly 1 year seizure free. WoooHooo.

So, during that time, I had a disability hearing in front of the judge. My lawyer screwed me over so I was denied yet again. Go figure. I had to wait 18 months before refiling again because if I refile now, my previous lawyer will get 10% as well as any new lawyer I choose to use. Those 18 months are ALMOST over with.

In August I had surgery on my left ear after loosing my hearing in it. Found out my ear drum had been busted since 2009 but the Dr's had never mentioned it. Thankfully, I lucked out by finding an amazing ENT. Surgery went well, though it was painful. But about 2 weeks later I got a massive infected which resulted in the surgical site being reopened and left open for the multiple return trips to the DR to have it cleaned out. That SUCKED! During that time, me and the Dr got started talking about my history of severe infections no matter what gets infected. He decided to do blood work and found out that I have an autoimmune disease.

As of today, I've had three doctors say I have Lupus. All three have said my organs have been affected but to what extent, we don't know yet. I'm currently going to the Kirkland Clinic here in Birmingham, AL. This was my last resort of in state dr's for Lupus as the first three either could not or would not help. The first one wanted me on pain killers all the time, second one was terrified to even try to treat me, third one tried but thought I needed a "better and bigger group". So here I am, at the last hospital possible in the state of AL to try. So far, so good. This Dr. is rated 1st in AL and 3rd in America for Lupus and he has wrote MANY books about Lupus. He's amazing so far.

Dysautonomia still affects my life but right now my biggest battle is my Lupus. Between the long nights with no sleep, even longer days full of pain, crazy high fevers, etc, I feel as though I'm going to go crazy.

I ended up in the ER the other night with a fever of 107.5 and was called a liar and sent home. Shortest ER trip of my life. Though I was happy to only be there 45 minutes, I would have appreciated being treated better and with more respect.

Anyway, thats the latest going on here. I'm going to try to start posting more often on here again. If anyone is still reading this, then I'd appreciate you saying a prayer for myself and my family. I will do the same for you and yours. Also feel free to find me on facebook at www.facebook.com/blackenedheart91. I hope all is well with each of you readers.


"If there are no ups and downs in your life then that means you aren't alive"

1 comment:

  1. Hi there. What I'd the Alabama doctor's name that you mentioned in your post? I'm in desperate search of a local doctor who understands! I live in Birmingham. (And I hope you are doing better) I just accidentally found you while doing a search online for a doctor to treat. ...can you respond to my email? I may not be able to find this post again. :-) jennie@drawing-girl.com