Confessions of a drug free narcoleptic....

ZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZ........
Oh sorry are we on? I dosed off again... My bad.

I have recently successfully gotten my Narcolepsy diagnosis......(pause for applause).

Thank you, Thank you! Why is this a good thing you ask? Well without it I was subject to the unethical behavior on Select Health telling me that they were not going to help me pay for Xyrem. But to be fair I could have had to deal with PEHP and that alone is like trying to stay alive in a walk dead episode! I'll take the battle with Select vs PEHP any day of the week....and the weekend!
 For those of you who are not familiar with Xyrem it is made out of pure gold. It does cost upwards of $8k a month.

No seriously that's not a typo it really does cost $8,000 a month....I'm pretty sure Jazz pharmaceuticals throws some pretty fabulous Christmas parties or at this rate Christmas fly-aways! Feel free to invite the money behind the party this next year! I'd love to see what fun I'm funding!  Just Sayin'!
On the filp side now that there is no question about my diagnosis, according to the doctor a janitor 3 rooms away could have diagnosed me. So wait? Why am I paying for a real doctor then, damn I should have bought the diagnosis by janitor Groupon! I could have saved so much money! 

My first step in this process was to stop taking my Effexor XR which is an REM suppressor. After going off that med cold trukey I enjoyed 2 glorious weeks of withdrawal symptoms, which included but was not limited too, hot flashes, irritability, motion sickness, headaches, sensitivity to lights, sounds, nausea, vomiting, a serious aversion to anyone talking to me, seeing stupid people, thinking about attacking the stupid people, wondering why the government is not regulating stupid people and their access port to our world, more hot flashes, more irritability, loss of verbal filter, loss of caring of loss of verbal filter, etc. Apparently my family has pointed out here that they also enjoyed this time frame as well but I quickly reminded them that this isn't all about them. Seriously people can I not just talk about me for a minute...

During this 2 week time frame I started talking with the insurance company about allowing me to go out of network to see a specialist since they could not provide me with one on their current provider panel.

Shockingly we didn't see eye to eye about the subject. Perhaps it was because they couldn't even pronounce Narcolepsy correctly which for some odd reason doesn't instil confidence in the patient (aka me) that you (aka Select Health) know what your talking about and that you held some sort of superior knowledge base to share with me about my diagnosis...Just sayin!

They felt that they had several doctors I could potential choose to see. Unfortunately I worked on the receiving end of several of those providers patients and I knew without a shadow of a dought that they did not have any further knowledge about Narcolepsy then I had already obtained during my own personal research and with some of the office management in those offices I would be better served sticking with my janitor Groupon, which surprisingly enough doesn't have an expiration date....score!

According to Select if I wanted to see an out of network provider I would have to exhaust seeing all the in network providers and then explain/ prove to them why they were not adequately equipped to treat my rare disease. Um, maybe because they may not know how to properly pronounce it like you select health....

Select did in fact inform me that based on the CPT codes that there was no limit on those CPT codes and they would pay for me to take the MSLT  to capture the REM component so long as they deemed it medically necessary.
Game On!
I can take a full day of  napping every 2 hours that sounds like heaven to me, minus  the goop in my hair.

Meanwhile I had met with my current provider, who I really respected,  to ask if she knew of anyone that specialized in Narcolepsy. She had heard through the grape vine that their was a provider in St. George that not only treated Narcolepsy but he too had it!

Oh happy day I thought not only am I going to finally see someone who has the knowledge but they also know exactly what I am going through! I was over the moon with joy that there was actually someone else out there that could help me and better yet he was in my provider network so I didn't have to schedule another boxing match with Select Health. The only thing this doctor was going to require was a four hour road trip. I can do that! 

Once in St. George I went in for my MSLT which showed right away I was a true narcoleptic, I was no longer just playing one on TV!

Looking Hot for my MSLT!

After my Crazy MSLT day, at one point during the test I am positive I was levitating and they were going to call an exorcist for me. I was lucky enough to get kicked out without needing to take all 5 of my naps. It's like when you pass the test you don't have to stay late.  I was done and I passed!  Truly I wasn't meeting the the Doc until the next day but I was confident that we had been successful!  

When I finally did get to meet with Dr. Watkins he so gracefully told me that a janitor 3 rooms away could have diagnosed my narcolepsy. I had a great meeting with him. It was so nice to talk to a fellow narcoleptic who also had the medical knowledge to answer the questions that I had! I left feeling like I had won the Doctor lottery. It was so nice to be able to feel like I had some direction and a team member in my corner! He told me I should start a support group in my area. I couldn't think of a better plan.

I often have told people that talk to me about Autism that I feel like when my son was diagnosed that I was dropped into the ocean with out a paddle. Now Autism awareness is everywhere. I hope that can make that much of a difference for Narcolepsy. There currently is no cure and there really is a lack of understand and awareness out there. I again feel like I have been dropped into the ocean on a small raft with out a paddle. But I am slowly drifting in the direction that I need to be.

I'm am glad to be someone who is going to pave the path for those that come after me. In the meantime I really can't be drug free forever. I have started taking my Xyrem every night. I have kicked the Nuvigul to the curb and I am back to my good buddy Concerta. Shout out!  While the does is a little low right now my doc and I are kicking it up the next go around. I have held off on the meds that help with Cataplexy since I wanted to see how bad my Cataplexy really was. So far nothing interesting enough to right about. It's interesting to now be able to recognize that the several odd things that I remember from my childhood really were Narcolepsy signs and I just didn't know it.

I am happy to say that I have found an amazing support group on Facebook called Narcolepsy Friends and one blog called Everything Narcolepsy that I am very excited about.  I am hoping to attend the Narcolepsy Conference this year in Georgia...maybe I'll be lucky enough to run into Norman Reedus! That would be awesome!

Anyhoo, It's been a long run. But as far as knowledge about how to manage my narcolepsy I feel like I am on the home stretch. Now it's time to kick it in to high gear and get ready to help others! I can't wait to get a "sleep walk" event started here. It's going to rock!

Happy Knitting,
The Narcoleptic Knitter!