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!!!

Great Video

Julie Carter is a great advocate for Chiari, in fact a number of years ago her family was featured on "Home Makeover" because she spent so much time working for US that she didn't have enough time or money to repair her home. Please watch this wonderful video she has put together and pass it on!!!

Private Practice and other things

Last night on ABC's Private Practice part of the show was about a woman who they diagnosed with Chiari. I of course watched the show. To me it didn't seem accurate at all but of course I live with the disease daily and my diagnoses was nothing like that and I am sure to many of your, yours was not either! A quick and "easy" (because we all know surgery is not easy) fix.

The one positive that comes out of TV shows choosing to air the diagonses of Chiari is it gets the name out there and it gets folks wondering, HEY WHAT IS THAT???

And isn't that what we we want them doing anyway??

I have been feeling off alot lately. Lost of symptoms! I really can't go to the dr because we don't have insurance right now. I guess it is a blessing that I don't have a job because I would have to be missing work but I would also have insurance to go to the doctor so that I could be getting better. Such a double edged sword!!

Symptoms raring their head...

I have been unemployed for a month now. Wow it really stinks to say that. The bad thing is now our insurance has ended. Without me working we can't afford COBRA. I refilled all my meds so that I would be ok because who knows what would happen if I didn't happen. The bad thing is I think I really need to go back to the neuro for another MRI, my symptoms are coming back in full force and I don't think upping my meds are going to help... UGH! All they did was keep me from getting headaches and the symptoms I am having are the tightening in my neck that eventually makes me feel like I am going to pass out because my heart starts racing as well as numbness in my hands and feet. This is so FRUSTRATING!

It would have to happen right at the time when I can't go to the doctor. Plus I haven't been to the neuro in LONG time!! 2 years maybe. I have have just been seeing the pain management dr because that had been working for me. What to do now.

Trying week.

So we have been without insurance for a month. I started a new job in April and my insurance ended May 1st. However my new insurance starts today! HURRAY. I have never been without insurance or made my family be without insurance. It was a scary month.

Ok now to the point of that rambling. I ran out of Topamax a week ago. As we all know this drug is a lifesaver for headaches. I have been fortunate that the weather is nicer or I would have had some horrible ones. I did feel off all week and my taste buds are back to normal, except I had gotten so used to my old taste buds that everything tastes super sweet now.

Well today after work I am headed straight to the pharmacy to get my prescription. I don't like the way I feel without my meds!!