So now what...?

General
#1

So I ended up taking a little hiatus for awhile after I was highly over prescribed a bunch of pain meds. I decided that I needed to feel me, the real me, without the hoards of the meds covering and twisting my brain all around. Back in February, I laid in bed unable to move prescribed Morphine and Fentanyl. I was so sick. Worst I ever felt. Finally I thought maybe I was going about it all wrong. I mean, I knew that my doctor was just shoving drugs down my throat because of all the kick backs he got ( he always bragged) So I knew I had to figure out what I felt like without all of those drugs. Besides, they were not life sustaining drugs right? So, I stopped them all. The first few weeks were horrible, withdrawal sucks!! Eventually, some symptoms got a little better. The leg pain that was caused by nerve damage due to the prolonged use of Vicodin, was so much better. My legs felt stronger. Easier to walk. Head, still hurt and I kept most of my other symptoms. But, it was a slight improvement, right. I changed my diet as well since there are a ton of foods that trigger migraines. Plus, i also stopped eating wheat (no help with Chiari but I lost almost 50 pounds since February!) But, here I am back in the saddle again. I could only go so long just being me without anything. So, now its back to the doctors and drugs again. I see a neurosurgeon on Dec 8th. The same one I saw two years ago. He barely looked at me and said he wanted to cut my head open. I'm sure he will say the same. I know that some people are thankful for the surgery. I know that some people require more surgeries. I also know that the politics that are behind medicine should not be there. I know that I have to settle for a lower qualified doctor because that is who is in my area and who my insurance will cover. I am frustrated. So, here are my questions...

1. Has anyone else run into issues with insurance?

2. How do your doctors/family/friends to understand what you are going through? (I tried before getting them to read "The Spoon Theory"...didn't get far :(

3. Do you believe that people can just be misdiagnosed and brushed off?

4. Did you have surgery? If so, did it help you? Would you do it again? How was your recovery? Was your doctor top notch or just a surgeon?

5. What makes you get up everyday and keep going? Keep fighting?

Thanks in advance. I just have a lot on my mind.

#2

1. My NS was out of network. He gave me a bit of a discount and insurance ended up paying 60% instead of the 80% they would pay for in-network. The hospital set up a payment plan for me!

2. I am kind of the opinion that no one without a chronic illness themselves will ever really understand. My doctor described it more as having less gas in the tank than "normal" people. You have to prioritize what gets done because you will run out of fuel sooner than most. To me I think that sounds a lot more sensible than spoons but that's just me! lol.

3. I think people get misdiagnosed all the time. Almost everyone I know with Chiari or any other chronic illness has been brushed off by doctors. I was told I had fibromyalgia and chronic fatigue syndrome before figuring out it was Chiari. After surgery those symptoms are much improved so I'm sure they were Chiari the whole time.

4. I did have surgery 2 years ago. I found it very helpful at reducing my symptoms! I would definitely do it again. I have a high pain tolerance so my recovery was very smooth. My doctor was with the Mayfield Chiari Center and in my opinion he was top notch. I know other people have gone to Mayfield and weren't as pleased but I can't praise them enough as far as my case was concerned.

5. I guess I go on for myself and my family. There are still enjoyable things I can do and that I want to do. I don't like to give up!