Carnival #4- "If my life were a movie."

First of all welcome to the Chiari Carnival!! I am so excited to be a part of such a great group of fellow Chiarians... Too bad we had to meet this way but so glad I am in such great company... But on to this months topic!!

If my life were a movie... HERE GOES! Grab your popcorn, Coke (whatever flavor your prefer, in Texas we call everything Coke,) you better be sitting in you favorite chair and have had your potty break because believe my life as a movie is nothing but DRAMA!!

I wish the story I was about to tell you I was making up but unfortunately I'm not.

It all started the day my oldest was born. He just turned 9 in December. All went well with the labor, the epidural seemed ok until the anistesiologist had to try 3 times to get it to go in my back. Finally relief from those awful contractions. Then a beautiful baby is born. But why won't this terrible headache go away?? The nurses kept calling it a spinal headache (something about a spinal fluid leak from the epidural) They needed to try a blood patch. Ok... Here I am 23 with my first baby, feeling like I am literally dying. A blood patch is where they take blood from your arm and then insert it in a catheter back into your back where the spinal fluid is leaking. They tried a number of times to get blood out of my arms. I was so dehydrated they couldn't get blood from my arms (plural), numerous attempts were made. I was black and blue up and down my arms. I felt like I was being tortured. You must lay totally still this whole time because you have piping in your spinal cord the whole time. Well this attempt was unsuccessful and they didn't want to try again while I was there. After this you must lay on your back for a number hours. Now remember I had just had a baby! This baby needed to be nursed, changed, held, loved. Try doing that flat on your back! They then suggested I just drink Mountain Dew...(while flat on my back!)

I am now being released from the hospital still with a raging headache... Told to take it easy the pain will ease up. Life resumes but the pain never truly eases up 100%. I knew from taht moment on that something was not right. 2 and 1/2 years later we move when I am 7 months pregnant from a one horse town to the suberbs of a metropolitan area and my 2nd son is born, this time no epidural complications he is born, no spinal leak, no excrutiating headaches. But extreme fatigue after he is born... I go to the dr, I am diagnosed with MONO... REALLY!! I have a 1 week old! What kind of luck do I have?? I get over that hurdle of a newborn and 2 year old and am still getting headaches. I just figure it is exhaustion... But other weird things start happening. My equalibrium is off. I run into walls, my fingers and toes tingle, they also turn completely white like a dead person when they are cold (terrible circulation).

In the fall of 2007 I tell my PCP about these weird symptoms, he says he wants to send me for an MRI. He says you usually find a zebra while looking for a horse. We were doing scans for MS and lo and behold Chiari was the diagnoses. He was such a smart man! In this same time frame, I have a terrible headache that causes me to pass out cold and break a tooth, luckily it wasn't my jaw! My mother in law also passes away from breast cancer. Talk about super stressful!!

This wonderful PCP who helped me passed away in December 2007 in a motorcycle accident and I cried because he was my angel! Without him I may never have gotten the help I needed! After he diagnosed me I went from neurosurgeon to neurosurgeon because I am adament to keep my head in tact, I finally found one that said surgery could wait until my symptoms finally lead to it.

I have also jumped from neurologist to neurologist because many just feel that my headaches are migraines which simply isn't true!! There is a huge difference and I just want them to understand! I finally found a Pain Management Dr who had been great. But in 2009 I was fired from job and lost my insurance. Let me tell you not having insurance stinks when you have an illness. Many doctors won't see you! Well when you need medication what are you supposed to do? My medication costed $500 a month for almost a year. I was on unemployment and at times choosing whether to feed my family or buying my meds. My husbands had no job at the time either! We were literally broke! But going without medication is like a death sentence. I would have been bedridden and since I was the one with 3 jobs, I had to have the medication to make the money to keep our family going.

Things turned around but when my husband got a new job the company's insurance wouldn't cover preexisiteing conditions for 1 year! That is terrible!! Once again my new PCP covered for me and wrote prescriptions but he said you have got to go back to the specialist, but now the specialist isn't covered under the new insurance and here I am in 2012 back at square one about to have to start interviewing nuerologists all over again! Being sick really stinks. I told you my life was a movie....

What a mess!!

I am so bummed. My husband got a new job a year ago and one of the insurance rules was no preexisting conditions were covered for a year. Well I have been flying under the radar with my PCP but he has said I need to go back to the other dr. Well guess what they aren't covered!! I get to start this rigamaroo all over!! Yuck!! So now I have to go and see an all new dr again... What a mess!!! And who knows how long it will be until I can even get it in....

Such helpful news for me!

I hope this helps someone out there as much as it helps me! I can't go and see this dr until my new insurance will pay for preexisting conditions. That is in April but as soon as it does I am scheduling an appointment with this dr. Because thanks to this article I now know what all my crazy dizzy/fainting feeling are!!

The Heartbeat Clinic

Two recent news articles that talk about Chiari...

A newstory from Austin.

A newstory from Burleson.

It just gets better... NOT!

Well my husband's insurance does kick in August 1st but here's the kicker they won't pay for pre-existing conditions for 1 year!! GREAT!! I am a walking pre-existing condition. Seriously why do things have to be so difficult!!

No meds...

So I haven't refilled my Topamax for this month and boy can I tell... I haven't had insurance in over a year and now no Drs will fill it for me because I have run out of refills, I can't go to the Pain Management dr because they don't see folks without insurance. I saw my PCP just to get some meds but he is now saying I have to see the specialist. So now I wait (not so patiently) for my husbands insurance to kick in in August!!

This is going to be a super long month!!

Nice new article.

Yesterday I was scanning twitter and was pleasantly surprised to see a local news article on a man with Chiari... WHAT?!?! They actually recognized that there are people living daily with this disease. Now I realize that I am one of the lucky ones. I have random symptoms headaches (daily) and right now this blasted feeling of bugs crawling on me, and maybe some numbness here or there. And of course the dreaded never being able to remember ANYTHING I wanted to say (which of course makes holding a conversation almost embarrassing) but these symptoms are totally doable!! I can thrive. This story took me back to thankful...

Anyways, here it is for you all!! And once again I was just surprised it was in my local newspaper!!

Now the flaws, the title... I know they had to make it all dramatic to get someone to read it and I realize that Chiari is HARD and dibilitating, but really... Yes many of us will die and many have... But there are many of us living as well!! Yea for him for getting to be in the study but why was he chosen, in fact how??? Why wasn't I asked? Or you? Or better yet how do we get chosen??? So many questions I now have!!!