"Ahem, excuse me, but can I have the attention of the class, for one second?"~Eminmen

As reported, I saw Dr. T on Friday. We discussed going up on the Klonopin to 8 mg a day. This was twice what the ER had recommended, but this is what she saw fit. This is why I've been stoned since.

The ER {a neuromuscular specialist who had been paged and was on the telephone, it was Labor Day weekend} had also recommended going up on my tizanidine {aka Zanaflex} to 32 mg a day. I LAUGHED at this amount. I was previously taking 8 mg a day, divided into 4 mg b.i.d. That dosage was enough to require a nap many days. "32 mg are they out of their g.d. minds?" I asked myself and my husband as the Neuro Resident walked away.

I also asked Dr. T that. So at first, we agreed we were going, well, I was going up on the Klonopin and the Zanaflex. So we discussed the dosing schedule for how I was going to arrive at  8 mg of Klonopin in 15 days time {trust me, it's day 5 and that's NOT going to happen on schedule-- I do NOT like being stoned out of my mind. It's going to have to be a little slower than that!!}

We then discussed, among other things, that I was going to arrive at 16 mg of Zanaflex. She did not give  me a dosing schedule. When I was ready to leave, I asked again, how do you want me to go up on that? "No change in that for now." I asked A, my favorite medical secretary in the whole wide world, "Can you ask her again how she wants to me to go up on that?" A again reported there was to be no change.

OK..... I thought.. Whatever.....

And I went about my miserable, terrible Friday and weekend, being clueless as to why Dr, T changed her mind.

Alas, tonight I get a phone call from Rite Aid's auto-reminder, telling me I had an Rx to pick up.  As I had a migraine and my neck was sore, I sent hubs. He comes back with the Rx, it's for Zanaflex, 4mg tabs to be taken 4 times a day........


Whatever!!!! Let the continued coma commence!

"Didn't I Blow Your Mind?"~ New Kids on the Block

OK so, it's like 1:30 in the morning, I am FINALLY awake and not stoned out of my mind, catching up on my Google Reader. Mike has returned from the midnight release of some video game at his work-- and I'm not  laughing because I've been to a midnight release or 2 or 3 of Twilight Saga movies/DVD releases.

After hearing me complain during my infrequent moments awake today-- seriously don't know how I made it through counseling-- it was really just R {my counselor} seeming to just feel bad for me; that's not what's she's ever DONE, nor what I WANT her to do, but I guess it's also the first time she's seen the Dysto in it's full glory. Mike drove by the way-- I don't drive like that, nor under the influence of drugs. He had the day off today.

Regresssssssssssinggggg... He comes in with this:

Really?? So I ask if he's read the blog this morning, he replies that he hasn't-- hell at this point I don't even have my husband as an active reader, and as I show him the blog, we both laugh. Will I drink it? Now? Probably! The pain and discomfort has settled tremendously and since today was his mom's birthday, now is the time we have together. He has tomorrow off too, but it's also my father in law's vacation week and I'm sure there are all sorts of plans for Mikey to have fun.

"Go Home, Get Stoned.."~ Hinder.. In this case, by 10 am

As goes the title, I'm not even joking. Maybe it was 9:30. We're titrating meds right now, so I took my pills when I got up, and this was the result: {Note: I looked pretty awake when I woke up, I felt pretty awake.}

What a HOT MESS.

I do assume that in a couple of weeks, I will be fine with the meds, but right now, I'm  a prescribed stoner,

Well, first of all, my neck is over-- can't help that, and I'm wearing Mike's shirt but holy hell! I am so sleepy after about 6 hours sleep that it took me 2 hours to begin this blog! I just stared at Facebook, listening to MSNBC, doing nothing,  

::Hear words::: Neck falls sideways::: Try to pick it up a bit::: Works::: Hear TV::: Head Falls:: Doze??

Then I had a sugar-free Red Bull. And I'm still sleepy. I try and avoid Red Bull en mass because of the taurine and the guarana and the side effects that may affect the heart and anxiety, but one is OK The other problem with the med increase is it causes a dry mouth so when I'm on the phone my voice dies.

{I feel like I'm shaking off the draining over- fatigue now, just feeling sleepy}.

I highly commend those of you that work, although I don't know how you do it. I would be sleeping on my desk for sure, almost all day!!

Oh look, 1pm: An hour til another dose......

He's The One You Call: Dr. Feelgood by Mötley Crüe

I write this because I'm not sure it's ever been "brought up" in any dystonia forum I've been on. If it has, people always reply with the stock answer "consult your doctor". Well. when it comes to my most recent med change, my Doctor said, "it's probably going to make you groggy and sleepy for a while". My reply: "It's not like I have anything to do!"


While I'm at it, let me get to another point about forums: I LOVE the 3 forums that I am on. They are friendly and the people are very compassionate. However, when questions get deep, people often offer the "I would call your doctor, because I'm not a doctor." YES!!! I know, I just want YOUR HONEST OPINION on what you'd do. YOU share this disease with me, YOU have the same situations in your life, a doctor does not.

The support I've received this weekend from ladies just being annoyed with me, commiserating,  meant WAY MORE than "let me find you another doctor, and here's why your doctor sucks, fire your doctor, etc. etc."

Yes, there's a time for all of that, but it's not during the breakdown.

"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.

Let's get straight to photo and video, shall we?

And Some Video Feed:

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***Before I begin this, I want to state that these are MY experiences, MY thoughts, MY opinions on MY LIFE as a Cervical Dystonia patient. I don't recommend doing anything that differs from your medical team's advice, even if I did. This is just my story, and I invite you in.***