"Everywhere"~ Tim McGraw

Where I have been all this time? See above for the answer. To challenge myself, almost all of my blog titles will be song lyrics from the song listed or song titles.. Well, first off, I've been wanting to update and really get this blog going,  but I've found spending a lot of time in front of the computer really increases my symptoms.  The answer to that has been my Droid~ aka my Godsend. I can do almost all of my computer work from it, and I just thought there might even been a blogger app I could get. It would take forever to type, but I could do it.

When I haven't been hurting, I've been enjoying the summer, and well, even while I've been hurting.
Since my last update socially, real-life and fun-life wise, I:

• Celebrated Easter, Memorial Day, 4th of July~ all by doing fun things.
• Spent a week in Lexington Park, Maryland with my JM bestie Morgan and her wonderful son Henry.
• Celebrated my 2nd wedding anniversary
• Went jetskiing and did other summery things
• Went to several country music concerts, including Brad Paisley/Darius Rucker. Jamboree in the Hills {that was a LOT of pain and I wasn't in the best mood, but it was honestly completely worth the experience}, Brooks & Dunn's "Last Rodeo"~ TWICE
• Moved in with my mom to take care of her after her back surgery and realized that my marriage could use some time apart. We are back together now, happier and stronger than ever.
• Spent a weekend with my family in Saratoga Springs, NY where I got to meet Denise, an officer and good friend of mine from the American Dystonia Society

On the Dystonia Front I have:

• Had many flare-ups "storms", including one ER visit requiring prednisone and ativan
• Had 2 rounds of Botox A that pretty much did not work.
• Began to plan a Deep Brain Stimulation surgery at Mt. Sinai Medical Center in New York City that seemed to be going well until surgery became a problem the past Friday
• Have been attending Physical Therapy on and off to help with pain/spasms.
• I will begin recieving Botox B on 10/29
• Have changed medications
• Scoliosis has been noted by PTist and MD probably due to twisting from Dystonia
• I had a L clavicle subluxation secondary to extreme spasm and pulling and along with some spreading dystonia my NS thinks is "from birth", I've lost a lot of the use of my right arm.

It's not been a good 7 months, dysto wise. I was planning and counting on this DBS working out, despite my fears. I have been in contact with the Cleveland Clinic and it seems like I may be able to have DBS there but what I think it really comes down to is my husband's upcoming promotion and better health insurance.

Let me also say for those of you that may read this, whether new to the disease, or old-timers, that I am in therapy, Dystonia doesn't exist in a vaccuum. It impacts your life in a huge way and many of the changes are not so easy to deal with. I can almost guarantee you have/had other plans for your life right now and depending on the life stage you are at, they can be huge to deal with. I recommend therapy if you are having difficulty accepting your dystonia, the impact on your life, your loved one's lives, or the depression that is so often co-morbid with dystonia.