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!

One Step Forward, One Step Sideways

To quote a friend - my doctors appointment was Good News. One step forward, and one step sideways.  I think that is a very accurate account.

Now I am attempting to write this for the third time. Yesterday quite literally exhausted me. I fell asleep immediately when I got in bed last night and slept in. Started to write this afternoon and slept 4 hours. My body still feels so tired.

Tonight I am just miserable. I seem to be fighting a cold that my daughter brought home from work. I ended up suddenly feeling very odd (symptoms I have come to learn least occur without reason, its not the first time). Gastrointestinal unrest, irritable bladder, dry mouth, dry eyes,  tension in shoulders followed by this tingling feeling in my arm or arms, chest pain, heart racing and then yes the jerking of limbs and a myoclonic episode, seizure, or whatever the fuck it is.... To be followed by ativan. And 20 to  30 minutes some symptoms subside...

Yes, all the doctors are aware of my symptoms along with enough to fill 3 more blogs. So, where are we - the endocrinologist was good.  The adenoma (always benign) is 3 mm in size, or about 1/8 inch... Its not putting pressure on anything. He pointed out a number of concerns. He took a few good size vials of blood and Sunday to Monday I will be doing a 24 hour free cortisol urine test.  We really won't know much until late next week as to what is going on. The side step - he doesn' t believe seizues are related :(

I was scheduled to see a movement specialist at another large university hospital today. I was so frustrated not knowing if I should go - lucky a short phone call with his staff, provided that he would need this endocrine information first. Problem solved -

I am falling asleep again. More tomorrow. Love to all