CCSVI

Chronic cerebro-spinal venous insufficiency (CCSVI) is a term used to describe compromised flow of blood in the veins draining the central nervous system. It has been hypothesized to play a role in the cause of multiple sclerosis (MS). This hypothesis was first put forth by Paolo Zamboni in 2008. An endovascular intervention for the syndrome has been attempted however further research is required to determine if the benefits outweigh the risks of the procedure.

In a nutshell. People that have MS are more likely to have veins that are collapsed or restricted and once they get the venogram, their symptoms go away almost immediately. The interventional radiologist goes in through the femoral vein and looks for those sad veins that need to be happy again. Once they find one, they put a little balloon in the vein and blows it back up. Creepy huh?

This is a new procedure that folks with MS are volunteering to undergo. I have only heard good things about it and I talked to Dr. Vincent about it and she was all for letting me take a shot at it. She ordered the venogram for me and we got it scheduled for today. A week or so ago I got an ultra sound on my jugular veins because they suspected that this is where I might have some restricted veins. The results came back that I did have a little abnormality in some veins so I was a good candidate for the CCSVI procedure.

My procedure was scheduled for 12:30 p.m. At 10:30 a.m., someone called me from the hospital and said that since I hadn't seen Dr. Hatch yet; there was no way that this procedure could take place. The lady I spoke to said she didn't know how I had gotten onto the schedule for today but I was going to have to reschedule.

I was so ready to be done feeling this way. So ready to be done feeling nauseous after looking at the computer. So done not being able to watch TV. So done not being able to drive and SOOO done not being able to walk without looking like a drunkard. I was crushed. I cried all of my make-up off and put my sweats back on.

I called my mom and told her what happened. She was all over the situation(she works in the radiology department so she has the inside scoop). She got on the phone with Dr. Hatch and basically ripped him a new one. If I was brave enough, I would have done this myself. He said that the hospital caught up with him and said that he hadn't turned in the correct paper work for me. blah blah blah. He apologized a billion times and said there was nothing he could do.

So for now, the earliest I can get in for the pre-venogram is on January 7th to make sure I am even a candidate(happy birthday Chels!). After that, who knows how soon I can get in for the real venogram?

I'm pissed, sad, and tired.

It's so important not to stress too much because stress makes my symptoms worse but that is almost impossible today.

Faith, not fear.

Weaknesses of the Flesh

You know how some blogs are somewhat interesting until the girl has a baby and then the blog turns into a look-how-cute-and-smart-my-baby-is-blog?
I don't have a baby but I do have MS.
This blog in now officially my "Let's talk about how NOT cute my MS is blog."
Have you ever been intoxicated in anyway with either alcohol or pills? If so, you'll know what I'm talking about.
The dizziness that lives with me every single day is like being drunk 24/7.
I can see the images in front of me but I can't, for the life of me, focus on just one object.
It's like my eyes just constantly jump around all day.
Watching TV,texting, reading and being on the computer make this dizziness substantially worse.
Which makes life really suck.
Now moving onto my balance. I have none.
I tend to lean towards the right as I walk down the halls and isles which makes me look like a wino.

I am fatigued after showering and crying really knocks me out.

Before November 4th, I really thought I could call myself a strong person who could handle almost anything. Just in the past 3 years I have dealt with 2 years of disabling back pain, 1 back surgery, 1 possible second back surgery, infertility, loss of jobs, and depression.

Over coming some of these things, you would think I would be a strong person right?

I can 100 percent, wholeheartedly say that I am NOT as strong as I thought.

My days consist of waking up, crying, yelling at Tyler out of frustration and fear, sleeping.
Lather. Rinse. Repeat.

I just can't figure out how to NOT less this take over my life.
I am so disgustingly sick of talking about it but I know some people
like to know about it and about how I'm feeling so I don't want to deny them a chance
to learn more about MS.
I have become a thousand times more emotional than I was before if that's possible.

I had an amazing epiphany during sacrament meeting last week as we were singing the sacrament hymn.

Jesus knows what it feels like to have MS.
He knows how it feels to be too tired to smile and say that everything is going to be okay.
Because the truth is that I have no idea if things are going to be okay.
But I know someone who knows how I feel and that in itself is so comforting.

During fast and testimony meeting today someone said that fear and faith cannot exist in the same space.
I know that I need faith but it's so much easier said than done when you're in the middle of feeling like a 24 year old stuck inside an 80 year old's body.
It's easy to have faith when you feel healthy and strong.
I am working on this faith thing.
There is so much more happiness in faith.
I know that.
I need to be happy again. My husband needs me to be happy again.
My mom and sister need their hilarious daughter and sister back.

Among other things, maybe this trial was given to me to force me to truly understand what faith means.

I see my neurologist this week to see about medications and other treatments. Her name is Pamela Vincent and I know that she is my girl. There have been too many signs leading me to her that I can't deny.
She recommends yoga to her patients for goodness sake!

Right up my granola ally.