Blast off in 4, 3, 2, 1...

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Blast off in 4, 3, 2, 1...

Postby CRHInv » Thu Nov 05, 2009 8:57 am

Blast off in 4, 3, 2, 1...

Okay, I just got back from Disneyland a few weeks ago. One of my favorite rides is California Screamin’ , the roller coaster. When we go, we ride this, a lot. Several years ago, after we returned, I watched my kiddos playing in the back yard. My youngest would load up his big sister and brother in the wagon and then recite, “Blast off in 4, 3, 2, 1” Whoosh, they were gone on a bumpy, twisty ride around the yard. When they returned to the patio, he would say, “Welcome back, screamers!”

I feel sort of like that now, but blast off is in four days. Four days and counting. I am so excited, I am nervous, but not as nervous as excited and hopeful. I have been going nonstop for almost two weeks now getting things ready for the trip and getting things ready for my kiddos for the time I am gone.

One great thing about Disneyland is that when that fatigue would set in, I would just get into a plummeting elevator, a booming ejection seat or twisting, looping roller coaster car and then I was awake again! We will see if this procedure can knock the fatigue out of me like a roller coaster ride does. I won’t get into my dream list of “what I would like back”, I will be happy, super happy, with the same thing as most of you, just stop the progression.

Here is a link to my intro thread if you are interested:
http://www.thisisms.com/ftopict-8034.html

Oh yeah, when I come back, you can just say “Welcome back” and leave off the “Screamers”. I am hoping not to scream, yeah, definately no screaming.

(Okay, now I am off to the tracking thread!)
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby cah » Thu Nov 05, 2009 10:08 am

Hello Beth,

I wish you a roller coaster ride which just goes up all the time and still is not boring, but the best roller coaster ride in your life.

Good luck!
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Postby ozarkcanoer » Thu Nov 05, 2009 11:17 am

CRHInv.... I am so excited for you !!! And I will follow your posts with the utmost interest !!!!

Ozark
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Postby catfreak » Thu Nov 05, 2009 10:42 pm

Beth,

I wish I could stay in Cali another week and meet you!! But going home saturday...

I will be checking for your posts regularly!

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby CRHInv » Fri Nov 06, 2009 6:02 am

Cat, I wish you could stay! We are going to have quite a TiMS group. You might want to come back! :wink:

Anyone else that is coming during the week of the 9th let me know!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby magoo » Fri Nov 06, 2009 7:20 am

Beth, I wish the best for you! I know that excitement, it was me 3 weeks ago!! I can't wait to hear about your journey. Take good care of yourself:):)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Have a Great Ride!

Postby Rose2 » Sat Nov 07, 2009 11:18 am

Beth,
Good Luck on your great adventure!! We will be waiting to hear from you! Hugs, Rose ;)
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Postby CRHInv » Sun Nov 08, 2009 8:05 am

Okay you guys, I am going to go pack now. Any suggestions that you think I might need or find helpful that I don't know about? I am going to be resting at the Sheraton for a couple of days after the procedure. My sixteen year old will be my helper. We aren't renting a car, since she 'just' got her license and I won't be driving anyway. So, if we/she doesn't have to venture out for something that I could have brought, that will be great.

Suggestions from others:
Button down shirt(s)
Sleep mask

Thanks
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby ozarkcanoer » Sun Nov 08, 2009 8:36 am

CRHInv... I am concerned about what to take on my trip to Detroit !!! I haven't been away from home since my diagnosis in Jan 2008. I have my daily routines here at home down to a science and this trip will upset everything. Do you take a lot of medication ??? I do... Copaxone at 6:00 PM, 2 drugs at 8:00 PM and 1 drug at 9:00 PM and another drug at 10:00 PM.

So when I leave I'm going to have all my drugs in one bag separate from my clothes, etc. My first Copaxone shot away from home will be an adventure for me. Last night I stopped heating the injection spot for the fist time to eliminate a step and it went very well.

So my suggestion is to organize your medications !!!!!
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Postby CRHInv » Sun Nov 08, 2009 9:03 am

OC, Luckily, I don't take many medications. I am going to leave my copaxone behind, since I won't do that when I am on blood thinners. I have traveled with the copaxone before and it isn't too bad. I just keep it with me and make sure it doesn't get banged around. Do you have one of these:
http://www.bd.com/us/diabetes/page.aspx?cat=7002&id=7416
I like this, because then you don't need a sharps container.
I hope you have a smooth journey. Let us know what they have to say!
Take care.
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby questor » Sun Nov 08, 2009 9:15 am

CRHInv wrote:I am going to leave my copaxone behind, since I won't do that when I am on blood thinners.


Beth, there is no problem taking Copaxone along with blood thinners. The nurse in my recovery room at Stanford gave me my Copaxone shot the evening of my night in the hospital.

During pre-op, they take an extensive inventory of all the meds you are currently taking. During recovery, you get your daily dose of the meds you need to take from their pharmacy, including Copaxone. Just make sure you tell them during pre-op the names of the meds you take daily.

I use a BD-Clip also, I find it especially handy when traveling.

Oh, and if you're going to be staying at the Sheraton for a few days, I'd suggest you bring a hot water bottle, it might help relieve some discomfort on the lower neck and shoulders.

--Tracy
Last edited by questor on Sun Nov 08, 2009 9:22 am, edited 1 time in total.
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
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Postby CRHInv » Sun Nov 08, 2009 9:19 am

Tracy, How is the bruising with the blood thinners and the injections?
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby questor » Sun Nov 08, 2009 9:29 am

Beth, I've had minimal bruising overall the last few months, and no problem with the Copaxone shots.

(I just edited my previous post, you might bring along a hot water bottle if you have one, you can probably use the coffee machines in the room or room service to fill it. I've been using one fairly constantly for a few months now. It can help with neck and shoulder pain, although I understand you should not use it near where the stents are placed.)

--Tracy
Last edited by questor on Sun Nov 08, 2009 10:48 am, edited 1 time in total.
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Postby ozarkcanoer » Sun Nov 08, 2009 9:36 am

:D :D CRHInv !!!!!! Hubby and I went right to our local Walgreens after I red your message about the BD Safe-Clip. They didn't have any on the shelves, but the very very nice pharmacist said they would order some and call me when they arrive, probably by tomorrow !!!! I love this board !!! You are all so nice and helpful :D :D
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Snacks!

Postby Rose2 » Sun Nov 08, 2009 10:33 am

Beth, there is a grocery store, Andronico's near the Stanford Shopping center on Quarry, big store, and I would stock up the room with snacks and drinks that you and your daugher want.
Oh, get some Bendy Straws (from the Hospital!) for you to use after surg.
It is alot easier to drink with those.
Good Luck from all of us!
PS! 2+ weeks later, yesterday I did computer work, went to visit friends, went to the grocery store (This is a BIG deal for me), and then went out of town for a dinner at a really nice restaurant on the Bay and I was the last one still chatting it up when everyone else was standing up to leave cuz it was 11:00 pm!!!! and the wait staff wanted to go home and I was oblivious to all of it except how much fun I was having and NEVER once noticed any limitations, fatique, cog fog, etc!!
My husband said he was surprised how I kept up with all the conversation without tiring and retiring back into my chair as I ususally do 1/2 way into a dinner out and then want to leave eary.
So, there is FUN ahead!! Rose ;))
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