Another month closer to HSCT ...

Oh my Goodness, time flies.

For the ones wondering how my 'Inner Easter Bunny' did ... well .. he did ... lol. In the end and dark of the night he ended up just tossing the eggs on the flowerbeds or wherever they fell .. oh well. They were all found with joy the next morning so life is good. Maybe next year they'll be positioned with more care and love lol. But believe me, it was a work of love just to get out wearing my husband's enormous boots, walk with the cane around the house, with a huge bag filled with chocolate eggs ... is there any greater love ??

Anyway ... we are in the middle of May now. In my efforts to not use all our funds for the treatment I had made sume rubber wristbands to start the fundraising. They'll be arriving next week. Two sweet friends have already agreed to have a container in their businesses so their clients can buy them ... fingers crossed. It's funny cause the message I printed in the wristbands are the same that titles this blog : flip the bird to MS. I guess selling them at my children's primary school is out of the question .. hahhahhaha, never thought of that.

Some other people sound so blessed and inspirational ... these words were the only ones that spoke to me. 'Flip the bird' ... 'kick it on the ass' ... maybe a bit violent but that's what I really feel when I think about it. I'll leave more inspirational sayings for better than me people .. hahha.

This week has been a blessing though. Had my good neighbour come for a tea on Monday and showed her around the house. She came right after we moved so the house had the old decor and boxes were everywhere. She had to find it in better shape now ... but just seeing her so impressed with the changes made me happy. You need to understand ... I don't need approval from people for something I think looks awesome (ahem) ... but boy it's great to hear how good things look. Besides, the only feedback I get (from hubby) is 'yeah, it looks fine' ... or sometimes just a nod ... men. Yesterday he was negotiating with me not to paint the garage doors.

You see, sometimes I try to include him in some changes I'll make, so I told him I was going to paint the garage doors the same colour of the trim (winter white). They are brown-poorly-painted-over-wood right now. But I found resistance ... so .. what will I do you're thinking ... well .. I'll wait until he goes away to work, paint the damn garage doors and he'll see them when he comes back .. lol. And he'll like them .. maybe fight it for a few weeks but in the end I'll convert him.

Wait ... I was saying this week has been a blessing, sorry. Got distracted.

This good friend that came Monday gave me a gift. We were chatting and having a tea (me a coffee) and she gives me this heavy plastic bag. She said she wanted to give me something ... I look at her puzzled .. what is it ? Well .... she gave me all the money she made selling hot chocolate a few nights before Christmas. See ? She and her husband put a lot of care in decorating the house and yard with Christmas lights and decorations. It's pretty amazing actually. Endless rows of cars drive every night since the begginning of December mostly to look at their display. All the others (which we include ourselves) just try not to look like the Grinch and put lights up .. but when you see people entering the court, it's at their house they are looking. It's beautiful. Well, one night in December their oldest girl gets in a Santa costume, signs are made, table is put outside and the pots with hot chocolate start pouring. Lot's of neighbours help. Myself and some of my children included. Money goes to charity !! It was a fun night. Cold but fun. Well .. in the end the charity wouldn't accept all the money they made cause 'it was too late' and they had 'already gave gifts to families in need'. What ?? So, she decided to keep the money and find a good cause.

I am the cause she chose.

Thank you from the bottom of my heart Julie.

One step closer to Russia.

Pre Easter preparations ...

So ... all I can think right now is 'How am I going to 'deliver' the little chocolate eggs tonight' lol. That is my husband's job usually. Now we live in a bigger house with a bigger backyard. And I'll have to wait til everyone is asleep to go walk around the house. I'm just trying to laugh at this and mentally prepare to NOT FORGET. Can you imagine ? Tomorrow morning and having a panic attack when I realize the Easter Bunny forgot to come ? hehheee, I guess I can always blame it to my MS but nope. Won't happen.
Filled the plastic eggs with chocolate eggs the other day .. checked.
Bought stuffed bunnies and other things to put in their baskets when they come down for breakfast .. checked.
Shoot ... I was writing this blog for my children to read one day ... Oh well, hopefully they'll be old enough and the magic will be gone ??
Anyway ... just needed to put my thoughts out there.
Happy Easter everyone !!
Last Easter with MS !!! wahooooo !!

Thank you's before all the madness ...

Thank you to my husband for putting up with my imperfections. One day, after my diagnosed, when I asked him what was his mayor dissapointment with my MS. He said, to realize I wasn't perfect, as he always thought about me. Me ? Perfect ? Seriously ... I'm full of flaws but I guess I disguise them well .. haha. I thought he was going to say, we don't do the long walks anymore, you don't come outside and play with us anymore, etc. I guess the things that are important for me are totally different of what he thinks. Thank you Rob for always loving me, as my walking gets crappier every day, or I ask you to bring the laundry up and down. Thank you for putting up with me, God knows my level of patience runs low lately. I love you always.

Thanks to my children who put up with me too. Who don't laugh or criticize my slow speed on catching up. Who help me and hold my hand whenever possible. Who just give me hugs for the heck of it. I love you all more than anything. Always know that I'll go through this so I can be a better Mom.

Thanks to my immediate family in Chile, to my Dad. For not going into details about my MS. He just asks about my leg. How is it doing .. lol. Bless him. This helps me to think of this as something foreign that will abandone me when I have the HSCT done.

Thanks to my husband's family. For including me in everything and for keep life going. Feeling normal is such a gift sometimes.

For those interested in my painting project .. I've conquered half of it. Today I finish the dining room and oh, it looks awesome already !! Totally worth the effort, the pain in the legs and back.

And lastly, thanks to all HSCT'sers that have put out there the word. Such informative postings. All that they've lived ... thanks also for going on with life and somewhat forgot about updating blogs ... life DOES go on after this, we do go back to normal and do other things. We do forget a bit about this. That is balm to my ears.

:)

Fresh coats of paint ...

So just to keep you up to date on my Russia adveture, I have been given an admission date for hospital. February 23rd, 2015.

I'ts been very useful to follow the threads on the Russia group that has done their procedure there already and all the rest of us waiting to go. To read all the 'must brings' that would have never crossed my mind. Reading all this helps me incorporate this new hope in my life.
Apart from my husband and my children, nobody else knows about this big leap of faith I'll be taking. Yesterday I told a dear cousin that lives back home. And she only gave me hope, and was very interested to hear everything about it. I love you Paula !! You've always been my sister and always will be.

I finally started working in this house. We moved late August last year. It's beautiful. Bigger, more room, wonderful garden, huge driveway ... it looks like a landing strip .. hahhaa. Didn't want to start painting right away. Wanted to live in it before changing anything. Good thing cause in September I had my gallbladder taken out. And it took me a couple of months to recover ... then it was Halloween ... and then Christmas. Big production where we moved so we couldn't stay behind.
So in January I started painting. Giving new coats of bright colours to my children's three rooms. To be honest, at the beginning, I though well, may as well start painting now. Now that I can still do it. Not gonna lie ... I'm slow. But precise .. hahhaa. It takes effort to go up and down the little latter. But it can be done. Thank goodness the former owner left the latter he used to have here. It has a handle so it's way safer for me.

In the meantime I found this great group about HSCT ... and now that I started my latest project (living room and dining room) I'm not painting cause I still can. I'm doing it to remember this part of my life in the future. And one day be able to think 'yeah, I did that, and I had MS'. I want it to remind me that if you work hard at something you can do beautiful things. It will keep me grounded when I get better.
Because I will.

On my road to Russia ...

Well .... I made it out alive from Disneyworld. First thought ... thank God I had a stroller to push !! hhahhaha. Seriously, thank God !!
Glad we had that time off and now I can begin my road to feeling better.
This week has been very exciting, I got accepted to go to Russia to have the HSCT treatment done. I don't think it has sunk yet, but I'm very excited. It seems I'll be going in late February 2015.
I'm very hopeful that this disease will stop sneaking in on me. And that sometimes it's a month and I'm walking a bit worse. I remember last year I would celebrate with a good cheer when I would feel this bust of energy and will finish the stairs without holding on the railings ... lol. Well, that's not happening anymore, but I'm still doing stairs, that's good.
So, that's where I'm at.
Starting the road to recovery.
:)

First blog ...

Excited to start blogging. Been thinking about doing this for a while. And what better moment to start than when you're on vacation ... lol.
Maybe it will be a way for my children to understand a little what their Mom went through. How hard it is not to join them in every walk. To sometimes say 'I'll just wait here, you go'. Meanwhile hating not looking at their faces when they see something for the first time.
Maybe it will be a way for my husband to understand why I stay back in every walk. I'm just slow, but it is ok to keep going, it's ok.
It might also be a way to keep my dear ones updated on how I'm feeling. I tend to always be ok, have a smile on my face. I don't like to whine or complain. Oh yeah ... and sometimes I may add or summarize the blog into Spanish for all my other half of people in Chile. How I miss them, all of them.
I have a plan. I'm going to kick this MS in the butt. Or at least try to. I don't want to compromise not being there for my children, or just half of me being there. I'll do my damn best to do more than that. I'm a fighter and I want them to know that.
For the potential followers (in case I have any ... lol) I'm married, have four children (9, 7, 5 and 3 at this time). I came to live in Canada in 2002 and loved it. I got used to the cold and the snow but really love the spring. Seeing every flower bloom is like a miracle every year.
I have been looking at different options to get better from this damn MS ... I have evaluated and tried lots of treatments. But the other day came across a big light of hope. A treatment that could not only halt the progress of my MS, but maybe I could get better. Heck if I could improve a 10% I'll take it.
Will keep you updated on this ... Last week I started the ball rolling.
For now, have to continue this vacation and I know my little ones will love it. We're going to Disneyworld tomorrow. Everyone is so excited. All I can think right now though is ... Just survive this, please legs, make it for a few more days.
Anyway, I want this blog to be a story of healing, of my healing. I know I'm not alone in this, there's many more and I hope to help them reading about my journey.

Now a little message for my family and friends in Spanish.

A mi familia y amigos queridos.
Algunos saben, otros no. En Febrero del 2012 me diagnosticaron Esclerosis Multiple. El primer año fue dificil aceptarlo, ahora solo quiero mejorarme. Este blog les contara la historia de mi recuperacion. Los quiero siempre.