Tuesday, November 24, 2009

Anger and relief

As promised, today I am on anguish and relief.

A Cure. Anyone in their right mind would be happy right! Well I'm not really in my right mind...Or am I!?

I'll start with anger so we can finish on a good note!

Anger
It makes me angry because doctors seem to be arrogant. If they are not the one that made the discovery they tend to not believe. They want to do the research themselves. Granted, they could find things missed or mistakes but obviously human testing has been done.
Wheelchair bound people are now walking thanks to the research of a doctor who has put his heart and soul into a research not only for the interest but for his personal gain.

The way I see it, Dr. Zamboni was brave enough to go against the big companies and make a very bold statement and also using his own wife as a Guinea pig.

If there is anyway that this treatment can and could help people who are sick, there shouldn't be a waiting period.
But of course, this decision comes from people who are NOT ill.

I could take years for the treatment to be recognised and then how will they decide who gets it first?

My relief
I know that I will get to see my grand kids one day. I will be able to one day have a sense of normalcy again.

There are doctors that are willing to perform the surgery now. Today. All I need to do is pay to get the scans. Pay to find a doctor. Pay to have the surgery. And I am OK with this. This makes me happy. I tell myself, these doctors...they understand.

My relief is that now there is something in my grasp. I can fund raise to get the funds to get my Liberty. I can sleep at night knowing that I am not going to depend on an injection that I don't believe is working as well as it should be. I can grow old and look forward to getting something else that may or may not be worse then the things MS can do but at least I've concurred one thing and that makes other things seems not so bad!

Strange eh..I told you, my head..it's in strange places lately!

Tomorrow I'll explain in easy words what this operation does and what it is!

Monday, November 23, 2009

Answer

Can surgeries cause a relapse?
Some said yes and others weren't sure.

Researchers have not yet been able to give a clear answer as operations and Anesthesia go hand in hand. They are not sure how to distinguish the effects from one or the other.

That being said it is fairly common for a surgery to be followed by a new attack within one or two weeks.

The cause is thought to be stress on the immune system but emotional stress may play a role there too!

Emotions = Confusion

I am so overwhelmed by information, emotions and support.

I do appreciate everyone looking out for me and being there. Thank you!
Don't stop either! I do take the time to read anything I get and if I already seen it it's good to know I did!

I'm going to take this week and go through all my emotions or at least try!

If you've taken the time to watch the W5 news cast then you are certainly happy with the news of a CURE for MS.

Starting from the first emotions and thoughts...I was very happy to watch the report but I had a strange emotion when I heard it was going to be on TV. Why you ask?...Well I guess that one is easily answered! I have been reading about this for months and my thoughts were..Ha! I already knew about this before it was made public!

I felt like an insider with information that other were finally learning about.

An other thought that hit me was an odd one but here it goes!
Pharmaceutical companies are behind everything because they are the ones to have money and they fund research. I had a good chat with Mark and Donna about this too. I / we have a funny feeling this research was "leaked" by accident on purpose to get public support prior to going public. Now that it's out and the public have been educated of the treatment, the pharmaceutical companies can't ax the research. You see were I'm going here!

Tomorrow...I'll write about anger and relief.

Sunday, November 22, 2009

The liberation treatment... a CURE!

So many things have happened in the last few days.

First I would like to say thanks to Don. Without you I would have never seen the W5 special. Thanks to Doris for calling me and telling me too!

I did mean to write and let you know about the coverage but I was ill with a bad stomach flu on Thursday and am only starting to feel better now.

For those who did miss the coverage, it was about the research that I wrote about a few weeks ago with the doctor from Italy! His research has made it to the surface, is being recognised and they have formally announced a CURE!

I have many emotions and it may take me a few days of writing to express it all.

For now, I will simply leave you with the link to the coverage and then I will ramble on tomorrow!

http://www.ctv.ca/w5/

Enjoy.. I sure did.
I never thought something medical would bring me to tears!

Thursday, November 19, 2009

Yuck and itch

What a rough last few days!
I have been feeling better then last week but listen to this.. It would make anyone start being ill!

It was Tuesday night, I stayed up a little bit later then I usually do. I looked at the clock and it was 10pm. I looked at Mark and said I'm done, I'm going to bed...Cue the crying baby on the monitor. I rolled my eyes and we were debating letting her cry herself back to sleep. She usually falls back to sleep in a few minutes.

So I decided to give her a minute or two. I headed up the stairs and then I smelled something not so good. Wondering what it was I followed my nose to Gracie's bedroom door...I decided to open the door...WOW...She was ill...very ill..

I have never seem so much vomit as I did that night.

I decided to stay home the next day and Mark went to bed after helping clean up the first time. Well I stayed up pretty much the whole night and did 3 loads of clothes in the washer between the little bits of sleep Grace would get. The washing.. that was dirty blankets from every time Grace would wake up...

Then my injection site...Today it is swollen to the size of my hand. It's itchy like crazy and hot.

All in all, we are all doing better but it makes for a crazy week...and it's not even Friday yet!

Monday, November 16, 2009

Do you remember?

I think I may be going senile...

I've read that one of the side effects of MS is forgetfulness.
I thought that maybe I had a good 20 years before I would start forgetting things and losing it!

Lately I have been having a hard time remembering small trivial things. This, I must admit scares me. I am only 26 and I can't remember if I went to pee or not. It's the first time in my MS diagnosis that I have had something scare me.

Mark finally told me last night that he is noticing me getting worse and worse. It's the short term memory that seems to be affected. I've been debating calling Dr. Costello (Neurologist) and having her check up on me.

That's it for today...

Friday, November 13, 2009

The good, the bad and the maybe?

Bad news...
Grace hasn't been sleeping thru the night for almost 2 weeks. A cold and teeth are keeping her up.

Good news...
I saw Dr. Kale (chiro) on Wednesday and my MS adjustment from last week stuck and this is a very good sign!

Grace slept last night!

Maybe...
We have a busy weekend. We have a table at a community garage sale. Let's get rid of the junk!
I have been sleep deprived and fatigued.
I'm hoping to have the energy to last Saturday!

Goal for the weekend, let go of "those" items that only take up space.
Cleaning up clutter has proven to extend your life!

Answer

The question this week was "Fever treatment and a heat box, is this a good treatment"

Now days we know that any heat is not good for MS patients but in the 1930's is was believed that heat was beneficial. Doctors actually prescribed a fever treatment with a heat box. They also used to advise their patients to move to warmer climates.

Interesting... I think so!

Research is a wonderful thing!

Wednesday, November 11, 2009

Simple...

Today it's nice and short...

November 11th is Remembrance Day.

Thank a Soldier!

Whatever the way you choose.. Go and thank them!

Tuesday, November 10, 2009

Life behind sunglasses

I'm still tired today.
So many times I've tried to put into words how it feels and I think I've got it!

Try this for me...
Next time the sun is out, look right at it. No cheating, take off your sunglasses and then quickly look at a white piece of paper with small writing on it.

You'll probably get a little bit disoriented, maybe dizzy, you'll have a hard time to focus and your eyes and head will hurt for a few minutes...Am I right? Now hold that feeling and remember it.

This is what it's like for me minus looking at the sun. You may have seen me wearing my sunglasses indoors or even when it's raining or just not nice out. You're thinking...she's weird!

Well I must admit, prescription sunglasses are very nice and at times I do forget to take them off but there are times when the darkness just feels better!

So there you are...life behind sunglasses!

Monday, November 9, 2009

Tired

I am tired today.

Mark and Grace were sick all weekend and still are today.
They were up all night coughing too which means that no one got sleep.

I have managed to not get sick yet...how...I'm not sure!

However with the lack of sleep from 3 nights I am not starting to have a few MS symptoms pop up. The best way for me to get better is to get some sleep. So there I go.

Good night!

Saturday, November 7, 2009

Don't move!

Have you ever been warned not to move...

I forgot to write about the chiro adjustment for the MS treatment last week.
My chiro is very gentle and always uses the "gun". I don't like being "manhandled" for an adjustment!

This time he had to use his hands and I was little bit nervous. He is after all working with the very first vertebrae in my spine! Do you know what could go wrong!

I was laying on my side and he was measuring me and adjusted what needed to be done. It was so fast and so painless that I thought to myself...this was definitely not worth it! Once he was done he looked at me and said "Don't move! I'll be back in a few minutes". So I didn't move! I figured there might be something else he had to adjust.

Well...Mark was in the room with me and we were talking about dinner plans for that evening and it hit me...I was so tired! I couldn't see straight, I couldn't remember what I had just said to Mark or that he was even in the room!

Turns out, this is a natural reaction if the adjustment was done properly. BONUS!

Just to give you a feel for this... When I got up off the bed I had to have Mark help me sit back down as I really did think I would fall asleep and well fall!

Friday, November 6, 2009

Kid in a candy store

We've all heard that expression right!
Well this was me yesterday at the Chiro's office and this was Dr. Kale too!

Like I mentioned yesterday, this new Blood / Brain barrier is a breakthrough research and has never been heard of in Canada and the US. Also, Dr. Kale having completed hid undergrad in Neuroscience was very exited to be involved in breakthrough information.

He did explain the research a little better then what I was able to grasp. Essentially the blood is pumped into the brain and in MS patients the brain is already slightly swollen due to the natural course of the disease. What then happens is the drainage is compromised due to the swelling. The blood cells are then "trapped" with nowhere to go. This is when they cross the barrier and enter the brain tissue also known as Myelin. the body's natural response is to send antibodies to the rescue! They attack the cells that are where they shouldn't be. And this explains why in MS the body is fighting it's own tissue.

Interesting Eh!

Dr. Kale has started his own research and is trying to get into contact with the doctor who initiated this study!

What we are hoping for is to see is a Venography can be performed in Canada and if I can be the first! Only seems right since I brought the whole thing to his attention!

Venography.. that's my next entry for you guys to read!

Thursday, November 5, 2009

Answer

Is it safe to have an epidural as an MS patient?

Some say yes and some say no.
The reasoning is that an epidural is meant to go to the brain and confuse the neurological impulses that react to pain. With MS patients, the last thing you want to do is "mess around" in there.

Some doctors swear that it is safe and this is because there isn't a concrete study proving else wise.

That being said, just because the small studies have yet to be recognised as True doesn't mean the data and findings are not valid.

Think about it...it doesn't only apply to MS research!

I've been bad...

I realise it's been a little bit and so today I will overwhelm you with information!

I would like first to say that I personally do not think that the H1N1 should scare you. The media likes to makes things seem worse then they are simply because much like sex sell so does fear. Tune out all the media and trust your gut. Common sense will also help keep you healthy. After all...the bird flu didn't kill you neither did SARS...I know because...well you are here reading!

This afternoon I am going to visit my chiropractor. A few weeks ago he introduced me to a treatment that he has been performing on MS patients for a while and I am going to start these manipulations in hope of some positive results! The area of focus is the first vertebrae in your neck, the one that your skull rests on.

Like a mentioned last week, I've been busy doing research.
I doctor in Italy has had a very interesting study going for a few years. His study has shown and proven that the blood drainage from the brain is not happening properly in MS patients. Actually of the 78 tested they all had a blood drainage problem. He also tested over 240 regular people of the same ages and such. None of them had this problem.

Although his study is not yet recognised in Canada and the US he has treated many patients by placing a "Shunt" (a small plastic tube) from the brain that then drains to the kidneys. This has proven to help with relapses however after a few years the brain gets confused and the Shunt must then be removed a period of time to let the brain and body heal.

I have shared this study with my Chiro as his first field of study was neurology. Boy! did I luck out!
He was very interested and I am excited to see what he has to say today!
I'll keep you posted!