Spring is in the air!

Today was a weird day!

Mark went to watch our Canadian Boys win the gold and I stayed at home with Grace.
After her nap, all she wanted was "Daddy?" so we went outside to play a bit.

After 40 minutes of playing with shovels and desperately breaking down the little bit of snow and ice we have head "Food?" and realised it was time to give up!

We came in and had lunch and WHAM! I got so tired I could barely walk and Grace was still full of energy. What a delima. So we went to her room, closed the blinds and made it dark. I then made myself comfy on the floor. I heard "night night" and I then fell a sleep but don't panic, the door was closed and she can't get into anything! She did however take it upon herself to read to me! Every time she would pick a new book, she would sit on my face to read it...

Like I said...I was a weird day!

I am still tired but I think maybe I pushed a little bit too hard outside.

Small world

Today I'm still tired. I didn't get much sleep again and I am starting to not like this at all!

I got a bit weak today and my legs felt odd. I felt like I was walking on a trampoline. You know how you walk and it feels like your legs kinda bounce back towards you but you aren't doing anything to cause it...Very strange!

I can't help but want to keep moving at moments like that in case my legs go numb again.

This afternoon I went to the bank again and opened up the bank account for the fundraising.

For those of you who didn't know...I am French Acadian. Not very many English speaking people notice my accent and I try very hard not to have one. Why? I'm not sure.
I write this because at the bank, Matt my banker asks...
"Where are you from?"
I say "New Brunswick"
"Where 'bouts?"
"Eh!..Bathurst" (no one ever knows were any place in the maritimes and they always say Oh yeah...)
"Yeah! That's what I thought"
"..." "..." "What do you mean?"
"I could tell by your accent"

WHAT!!!!

Anyway that was very odd but there you have it...Small world!

I now have the account set up and there may be a way to get the Branch to help fund raise!

Bank..'ed

Well I had a visit with the banker today...
WOW... do I make this easy, hard or a bit of both..

Here's the deal.
I can keep this small for the time being just to get the imaging done and open a personal savings account. This would cut expenses down and have less in monthly fees.

I could go big right away and then be set if I have to fundraise for the surgery too.
This one involves going to a registries office, registering a "business" which would either be a Charity, a Fundraising or hmm.. the word escapes me at the moment...
After this, I need to meet with the Business link to see what needs to be done to issue tax receipts, see what paper work needs to be drawn up to not have to pay taxes and then give all of this info to the bank. From there I send the info on to those who want to help...

So much to do!
I have not slept in 4 nights now. I think partially because there is just so much to do in a small amount of time.

I have decided to help me not stress out that I will open a savings account. I meet Matt at the bank tomorrow to do this. For now it will be under my name. I will send you the info as soon as I get it.

Once things settle a bit in my little busy world I will be finding out all of the information and get the business account. In the mean time I will keep track of every donation and hopefully I can have tax receipts issued...wouldn't that be great!

Hot date with a banker!

Well I called the bank today and here goes it...

I have a meeting on Thursday with Nick.
Nick is the Small Business Manager and I've been told he is the one that I need to talk with.

All I have been told to date is that I need to bring 2 pieces of ID and there will be a $7 / month fee to run the account.

Can't wait to see what else he has to say!

Booked in!

I received my booking confirmation this morning!!!!
On April 8th I will be flying to Vancouver and having Doppler testing as well as MRV imaging!
I am so happy!!!!
Can you tell?

This week I have to go for blood work that I requested from Dr. Yip.
I wanted my iron, vitamin B12 and vitamin D levels checked and this is something that I will request at least twice a year.

For the imaging in Vancouver they will need my Creatinine levels checked within the last 3 months from April 8th so I am going to ask to have that added on as well!

I feel it in motion and other then being tired today I feel relief coming.

Working for a cause

Well.. I've done more searching and asking and well.. you know!

Tomorrow I will be going to the bank to open a bank account for all donations that are sent to help in my quest for CCSVI imaging!

All funds that are raised will be placed in that account and I will let you know what that is if you choose to help!

I will need to talk to the bank and see if I need to do anything special since this is a donation / charity kind of thing. This is all new to me but I'm learning!

I want to let you know as well that if we raise more then what is needed for the CCSVI imaging, the funds will be left there in the event that I become a candidate for the angioplasty surgery. If this becomes covered by public heath care I would then like to place the funds forward to those who need it weather it be the imaging or anything else MS related.

We are planning on doing a few events to raise funds. I will keep you posted...I think these events could be lots of fun!

Fatigued

This was a great weekend.
Today we went for brunch with the family and I felt quite fatigued along with my usual side of headache.
Luckily just as I was seriously fading, Grace decided to need a nap. Bonus! I got to have a 2 hours sleep we with her!

I've done a little more searching and planning.
The scan that I will be having done in Vancouver will cost approx $2,500.00.
Above this there is airfare as well as hotel and food and whatever else may come up!
This is a big chunk of change and this is why I have decided to fund raise.

I find this part very difficult. I am not one to ever ask for help.
I do however know when something is simply more then I can take. Since being diagnosed I have realised and am still working on stopping and saying...This I can't handle or I need help with this.

If the table was turned on someone else, I would be the first to stop and make a donation. I understand that everyone needs help but it is so hard when it is myself. I feel quite wrong asking for help.

Strange how we all work isn't it!

Fund raising!

Thank you Sandra!
I have been to your facebook page. It’s a great tool and I love the information! Keep it up!
I have also been in touch with False Creek Surgical Center in Vancouver and have lots more information to share.

False Creek and their Advanced Diagnostics are offering MVR & Doppler of the carotid and jugular for MS’ers.
They sent me the requisition form and all I need to do is have my doctor (or any doctor) to sign the dotted line!
Looks like I will be going in to see Dr. Yip again tomorrow!

With all this great info I hope to get my imaging in early April.
Once I have the imaging completed, False Creek will analyse the findings. I will be forwarding the scan to Dr. Haacke as well to help him in his research.

This will be quite costly and I am going to fund raise to help pay for the trip, accommodations and the imaging too!
If you would like to help, simply send me a message or an email (mark_nat@shaw.ca).

Thanks again for all the information and support. I truly appreciate it!

I'll keep you posted!

I'm thinkin'...

Thanks Steve for sharing your link. Great pics...and legs ;)
I loved looking at your pictures and it got me thinking.

I was thinking of how lucky I am, of how lucky others are, how we are all lucky in our own little way. Some...no most of us don't realise it but we are.

I was also thinking about what we are given. I think I may have written about this before but here goes it again!

I truly believe that we are only given what we as our own person can cope with.

I have a girlfriend of mine who is expecting her first baby. She is lucky. She has the same worries and thoughts that every mother to be has. I know I had them but again I think that she will be getting only what she can handle.
Now you probably wonder why I say this.
I say this because with Grace I got lucky. I got a baby who slept lots, loved to snuggle and be held. This is want I needed and all I could deal with. I spent almost 7 months of my mat leave ill with MS symptoms. Had I been given a baby with colic I am not sure where I would be or how I would have dealt. That said I do realise we all adapt but to what extent?

Today I when to visit my family doctor whom I simply love. I got a req. to get my iron, vitamin B12 and Vitamin D levels checked. He is also behind me 100% on doing anything he can to help me along with my trek to getting the CCSVI imaging as well as the procedure as long as I do the leg work.
I laugh...
This is an inside joke with him and I as I have always brought him information or new things and he then always states...do some leg work and send me more info will ya!

To finish this out tonight, I would love to encourage you to send me your facebook groups, youtube diary or anything else that pertains to what I am going thru. I do read all of it and love to follow your stories too!

Research ... calls... waiting...

Thank you Sandra for the info and for reading!

I am always so shocked when I see / hear that the general public read my blog. It makes me happy and it's also strange to think that people other then my loved ones read. I love it!

I spent a small portion of today on the phone trying to get past results from my past MRI's. Both research and diagnostics. I then spoke with Jessie who is Dr. Costellos' research team leader...I think! She is very sweet.

She let me know that Dr. Costello did apply for funding to start performing the CCSVI imaging. This means great things for Calgary if she gets approved.

I am still in contact with Dr. Haacke daily and he did inform me tonight that he is hoping to "join efforts" with False Creek in BC.

My MS goal for tomorrow is to get in touch with False Creek and see if I can get a Private Scan and if so, what would be the cost. I also read briefly that they are trying to get public funding which again would mean great things to the Vancouver MS clinic patients.

I find it very interesting that Alberta has the highest rate of MS patients but somehow we seem to have the hardest time getting anywhere as far as research and help.

I received an article today from a friend. Again, it was great news towards the MS world but this article was about the Universities of BC and Saskatchewan beginning patient trials. My question then becomes "What are the Universities in Alberta spending their money on?" Pharmaceuticals? Oil?... who knows!

After another day filled with information I still am very hopeful that only good will come from this. I hope to be able to one day help break the political walls surrounding treatment. Ambassador maybe? I also hope that if this isn't proof of a cure that it can then become (in the very least) a treatment that can help alleviate some of the symptoms or even help prevent relapses.

Let's keep our fingers crossed!

And the Frustration begins

I must say...Frustration is something that becomes almost a new best friend when you are diagnosed.

I called the MS clinic today to try to add the CCSVI testing to my next MRI and was flatly told that no one in Alberta will be tested. No and, ifs or buts.

Well then.

How , please tell me, is one to get better if you are being refused a testing that could potentially help you get better?

In case you are not sure what the CCSVI testing entails...
It is about an extra 20 minutes added to the MRI. They inject you with contract dye and then take a series of images that only show then veins, arteries and blood vessels in your body (part being looked at). This is were they can see clearly if there is an obstruction in the veins or if they are collapsed.

There you have it.

I am on the hunt for a place..anywhere... to get the testing done. Private clinic or not.

Something to think about...

I love to read.
After reading to learn more on MS my favorite books are the CSI types. You know...Blood, guts, gore and a great story to keep me turning the pages.

This said, I love Mitch Albom as an author. I first heard of him from himself! I attended a Power Within here in Calgary just after Tuesday's with Morrie was released and fell in love. What a great story teller.
Now I tell you about this because I just finished reading "Have a little faith" and it was yet another great book. I wanted to share a little blurb from this book with you because it made me think and it is something I need to work on. I think most of us do at some point.

This is from page 59 and it's a Sermon by the Reb.

A little girl came home from school with a drawing she'd made in class. She danced into the kitchen, where her mother was preparing dinner.
"Mom, guess what?" She squealed, waving the drawing.
Her mother never looked up
"What she said" tending to the pots.
"Guess what?" the child repeated, waving the drawing.
"What she said" tending to the plates.
"Mom, you're not listening"
"Sweetie, yes I am"
"Mom" she said "you're not listening with your eyes."

I cried when I read this.

He then finished the book with this:

"I am in love with hope."

I want to be in love with hope.

This weekend has been one that has given me hope.
Hope.
I have read many things this weekend. Many medical articles, many press releases, many doctor statements.
It gives me hope.

Oh my GOD!!!

Well... one thing leads to another!
While writing my post yesterday I was browsing for some information as I always do and found the link in facebook which I shared with you.

After printing the power point presentation and discovered that Dr. Haacke was looking for some patients for research.

Search, search, search some more and I (Donna) found a link with his email address.
Last night I decided to send in a quick note letting him know that I was interested and that I did in fact have an ultrasound showing collapsed veins in my neck.

This morning I came down, check my email and WHAM! Dr. Haacke sent me an email.. Me.. Little old me!
I swear this must be what it feels like to win the lotto!

This all said, there is nothing to say that I will in fact be part of the study or that I am being given a chance to become a candidate but an email is a good start!

I'll definitely keep you posted!

My immune system is the pits

Last night I decided that my immune system is the pits.
I sat down and tried to think of the last time I wasn't sick and realised...it's been a long time!

I lost my voice at Christmas, then I got a relapse, a sinus infection and now a cough with congestion. I wonder if it's all part of the bigger MS picture seeing as MS has been said to be an auto immune disorder.

I don't often read the news paper and I must admit, I love getting emails from people who read something on MS. I get them from everyone and LOVE IT!
So far I've received news paper clippings, online news paper feeds and also google searches. Please keep them coming!

Donna read last week that Dr. Zamboni is currently in Hamilton helping the research on CCSVI. She also read that the Dr. in Buffalo has found that not all MS'ers have blocked or collapsed veins. This is negating Dr. Zamboni's research however they have not dropped the research. They are still working to see if there is truth to the original study.

I have come across this great site via Facebook with everything surrounding CCSVI.
Take a peek...I just came across it so I have lots of reading to do!
I even includes the Power Point presentation from Dr. Haacke!

http://www.facebook.com/feeds/notes.php?id=110796282297&viewer=0&key=7562cb1689&format=rss20

Sniffles from nowhere

Last night was a hard night. Grace wouldn't sleep by herself and we don't want her to get used to sleeping with us. She was awake from 10 - 1am. Needless to say Mark and I are tired today.

I woke up with lots of energy and that was quite the surprise!

Grace had a Valentine's Day party and I made cupcakes for her to share. I was so excited for her!

On my way to work I felt congested all of a sudden. By early afternoon I had to breakdown and admit to myself that I got the cold Mark and Grace shared all week. Shucks!

Fatigue also hit me around 2pm today. That was the MS knocking hard. Wow...
I got dizzy and tired. My eyes were burning and my short term memory was all over the place.
I imagine people who have conversations with me on days like this think I must either be faking it or that I am completely nuts!

Let's hope I wake up in the morning all better!

MRI's and injections

Well I have yet an other MRI on Friday night starting at 5pm...What a great way to start the weekend! It will be almost 8 pm by the time I leave the hospital.

A few weeks ago I told you how frustrated I was getting with my daily injections and the side effects. Now that I am prepared to speak to my neuro about the possibility of changing the side effects seem to be getting better.

It's been almost 2 weeks since I have had a big swollen bump at injection site. The site is still itchy and warm but nothing like it was. I am starting to believe that it truly does take 6 months for your body to get used to the injections... Ah what to do now...

Pain.. oh my!

This weekend was a quiet one again... I love it!
I woke up in pain all weekend but once I get moving I feel better.
I have been told many times by the MS clinic that I really must do my daily stretches 3 times a day. If you are anything like me the prospect of sitting and stretching doesn't sound like too much fun.

I did however have to do some stretches last week at work only to get me thru the day and that is still going on today. So there is some truth to it!

This weekend we participated in "Clean to the Core". It's a city initiative started by one of the local alderman to help clean the down town core and connect with the homeless population.

We all meet at the Drop-In, form small teams and go pick garbage, pickers and all!
It made for a nice walk for Grace and I and hanging out with the clients is lots of fun too!

Speaking of which...The Drop-In has a story carnival on their website at the moment.
The Carnival is people of the DI, staff and clients alike sharing their favorite DI story.
Go check it out!
www.thedi.com
Vote for Mark!

A long week

Wow...I can't remember the last time I was so happy to see a Friday come!
We have sorted out the Day Care, I feel better, work is calming down and it's finally the weekend!

I became a Great Aunt last night, that's kind of strange...Never happened to me before! Congrats Cathy!

I am still feeling quite healthy so I am going to officially say that this relapse is OVER!

This week my blog hit over 2000 hits. I didn't think people would actually read when I started this. It's kind of nice and also strange to know!

I do want to thank "Anonymous" for your advise on my injection fiasco! My birth sister who also has MS is on Betaseron and has done quite well so far. I an going to see my neuro in March and will be talking to her about possibly changing meds.

My original gut feeling was Copaxone. I have written about this before. What I have learned since making my decision is that Copaxone is the only synthetic medicine. All the other injections are biological and grown on live substances which I find deranged in a way. I feel the same way about vaccinations.
I am still not sure of moving to an other type of medicine but I am also not sure I am done with Copaxone. This is almost as hard as parenting!

Parenting...who knew?

Wow...what a day!
Mark and I started the day somewhat like everyone else...
Drag your butt....Monday morning...Snooze one more time...

Then we dropped Grace off at day home and realised it was time to find a new home...TODAY.

We both spent the entire day looking for a new home or day care.
One interview down, one to go. I love her to bits but WOW being a mom is hard work!

This said I am very tired and stressed because I worry about my peanut!

I do believe my relapse is over now.
I felt very good this weekend. I still have headaches and the heat flashes but otherwise I feel a lot better then the last few weeks.

Let's hope I get rest tonight and all the "Mom" worries don't lead me back to relapse land!