Jerry's Famous Deli - Oh and Neurology and Rheumetology

So I have done the FUN update and I guess its time for the health update. I saw the neurologist and a rheumetologist on Monday down at Cedar Sinai. Forgive me if this is a bit blunt, I guess these updates seem to be getting quite mundane and old. I wonder if anyone really cares to read them.
Brett was amazing as usual I was in pain and struggling with nausea so early in the drive I climbed into the back seat, laid down and was out (thank God). I woke up somewhere near Hollywood Blvd. - just a couple blocks from the neurologists office. For the first time ever I think - we were early and the dr was running late. When we sat down I went through my normal journal that I keep. As of the visit I am averaging one seizure every three days. Not easy on the body and not so great on the brain. The discussion went back to EEGs being normal. The Dr suggested and seemed to strongly consider re-hospitalizing me and hooking me up to the standard EEG as well as putting electrodes or whatever they are up my nose and into my ears (allowing them to read electric activity deeper in my brain than the surface EEG allows. He mentioned we would have to simply wait for me to have an episode or two so it would be some time. ( NOTE they average 1 every 3 days they actually happen in clusters i.e. nothing for a week then 2 in 3 days.) I have gone 2 weeks within this average before having a cluster. So hospital time sounds just glorious oh and basically no matter the results they would basically try anti-epileptic medication in the end anyway. Sooo...Brett and he deduced that we should just try the meds. On Tuesday, I started 200 mg per day of Tegretol twice per day. Warned many times of the toxicity of anti-epileptics I wasn't really sure what to expect but....so far not terrible. Some slight nausea, dizziness, slurred speech, don't walk straight, but all of these I have sometimes anyway so who knows if its the meds? I should note I also doubled my klonopin 2 weeks ago and I am taking 750mg of Robaxin 2x a day (not just as needed)
I did have an odd experience Tuesday morning (before starting the new meds) I was up and getting myself together a bit when walking out of the bathroom and without warning, I seem to have blacked out, came to sitting on the floor in my bedroom phone still in hand, and a Payton (my boxer for those who don't know) on the majority of my lap. I cut my left outside knuckle somehow in the process and have a few new bruises on my legs but otherwise I am fine. I immediately got in touch with Brett who rushed home to watch me the rest of the day. My speech and gait were altered for a few hours after and my mood was quite irritable the remainder of the day. Otherwise, I seemed fine. All after symptoms are common for me both prior to and following seizure activity. I'm not sure what to think of the experience.
My other adventure Monday, besides eating at Jerry's Famous Deli for the first time. Just too bad they are right next door to the rheumetologist.....YUMMY is all I will say. We saw Dr. V and his PA Cori. Amazing people - just from the start. They were caring, interested and you could just see the wheels turning. They spent well over an hour collecting history, then was the exam and lab work. Dr. V was very honest - he doesn't see any outward obvious signs of an autoimmune disorder. He did all the blood work because there is reason to question. I will go back in for results in a couple of weeks.
At the same time I go down for results, we will meet with the neurologist again to follow-up on the new medication.
So, really aside from trying Jerry's Famous Deli - not a glamorous trip....nothing exciting to report. Today is day 7 without a seizure. I am hoping this trend continues. My body is just now starting to feel less pain and strain, although the fall added some. Praying this treatment works and I am back to me again soon.

Happy Anniversary lets Viva Las Vegas

Oh I have been so neglectful of my blogging. It has been a mixture of good and bad. I had a wonderful "break" from everything for six days. April 3 my husband and I celebrated our 18th wedding anniversary. I thank God each day that we are together. He has been my everything throughout my illness and my life. How many people are lucky enough to meet their soul mate at 14! Its been an exciting road, lots of love and hard work.

With encouragement from my doctors I was able to make our yearly trek to Vegas for the Viva Las Vegas Rockabilly Weekend 15. For those not familiar it is a weekend of wonderfulness everything - cars, clothes, burlesque pinups, tiki pool parties, beautiful women, friendly people from all over the globe, shopping and did I mention amazing cars including showing ours at the famous car show.

I met some amazing women by chance during the event. Women dealing with terrible illness, pain, weight gain as a result of all of the above. They were women of all shapes, sizes, backgrounds. They were from the US, Canada, England and Australia. I felt absolutely invigorated to share our stories just by chance as we wandered through vendors. It quickly didn't matter that I was heavier than I prefer or that I was missing bands, events and other things. I revelled in the relationships. I find myself wishing we had exchanged contact information.

Of course I have lots of health updates but for today, I am going to leave it here. With joy and happiness that was Viva Las Vegas Rockabilly Weekender 15. We have been posting pictures for those interested on facebook at Slo Joe Photography - feel free to check it out!