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!!

Hello to my new readers!

I will answer your questions Kate! Yes I do still take Topamax. I know a bunch of people who start it hate many of the side effects, the metally taste, I know it totally change the taste of Diet Coke for me but now I don't remember what Diet Coke tasted like before Topamax. I remmber when I first started taking it the Dr said I want to warn there it one side effect I have to tell you about and he was super serious. I was like great. I am going to grow a 3rd eyeball. He says. Weightloss. And I say OH DARN!!! I proceeded to loose 35lbs that year! I haven't looked better! I get compliments all the time on how great I look and I haven't done a blooming thing it is AWESOME!! I take 2 in the morning and 3 at night, for a total dosage of 125. My Excedrin usage is about 2 pills a day and my favorite Excedrin is the tension headache. That is the one that works the best for me. I have Tramadol to use but it really doesn't work as well. So I get my liver checked every 6 months because I prefer the Excedrin. I hpe that helps!!

So excited...

I have a new follower! She has Chiari as well and she has had surgery but it wasn't decompression! Which gives me hope for days like today when I feel awful but had to pull myself out of bed, throw back some meds and go to work!

Here is her blog! ENJOY!!

It's been awhile...

Which in the world of ugly diseases can be either a good thing or a bad. In my case that is good. I mean I have my days where there is an ache in head, sometimes a throb, but the pain in manageable! I just had a check-up this last month with the pain management dr and all is well! Our course of action seems to be working!

I asked her once again is it ok that I take 2-4 Excedrin Tension a day?? She said yes! She said that is why I check your liver every 6 months. She told me that I really needed to pay attention to what caused my headaches. I know what they are:

Lack of sleep- can't control I have way to much to do and not enough in the world to do it.

Weather- can't control when it is going to rain

Stress- can't control who is going to make me angry in a given day

The one thing she did say that would help me is to take more time for myself... really I have 2 jobs, 2 kids and a husband and where do I find that???

All in all things are going good on managing this ACM1 and the longer I can hold off on surgery the better!!