My day to day with MS ...

I've been asked many many times what are my days like. 

For family here in Canada, I guess they get used to my condition. To me, I'm so used to it but I do feel worsening very slowly. But then again I look a year back, and I'm pretty much still doing the same things. Maybe I slowly adapt, as my family does too.

It doesn't face my children to see me hanging for dear life on the stair railings at night, just so I can get upstairs. 

For my family and friends in Chile it must be different though. They don't see the day to day. They don't have time to prepare. I just go into their lifes again every year if I'm lucky. More every two years. I'm sure they can see the changes. I went there two years ago to spend Christmas and I was using a cane already. Funny story : a dear friend let us use her beautiful house at the beach for a week and I totally forgot to bring my cane with me. You want to guess what I used instead ? yes, my husband found the perfect alternative. We unscrewed the brush part and I was using the long stick .. hahahhaa. A bit too long, but there was going to be some beach walking so I needed something. I'm sure some people turned around to see this makeshift cane. But as you know, I entered the 'I don't give a damn' stage a couple of years ago.

This year when I briefly went in August, I was still using a cane. But I noticed I welcomed any help. Well, that could also be that my nieces and nephews are almost all taller than me by now, and they are all adorable. And holding their arm is at the same time help and their way of showing me I can rely on them. And I show them I need them and appreciate their help. I love you all. Just don't make me laugh when we're walking or I cannot give one more step .. hahhaha. 

I learnt a while ago that it is ok to accept help. To accept you need that help. It's ok to accept someone's arm to walk beside them. It makes both of us feel good. Many hands help me here at home too. As you know winters in Canada can be pretty tricky for people like me. I always welcome a hand to walk on the icy paths or house entrances. Better be safe than sorry. And my husband's family are awesome at that. Always lending a hand, an arm, a full body embrace if necessary .. hahaha. Of course I wish I didn't need it and I'd be free as a bird. But that's life. That's how I can cope now. And I'll take it. I've accepted it.

So, my day to day goes like this.

Early wake up at about 6.12 am. Well, the tv goes on at that time .. I finally get out of bed after 6.30. Get ready, look at my grayhair .. need to get it done this week. Turn everyone's light on, so they start their day. Make sure beds are made, complain when I have to help with some bed making except for mine, help with some colour combinations on the clothing .. lol ... get the little one dressed. If I were her I would just stay in bed, in pjs all morning, but she insists .. lol.

Then we come downstairs. Pups get out of their cages, get a treat, go out to pee (the pups, not us .. we do have bathrooms ... haha).  Breakfasts ... most of the time they make their own and help little one with hers. I'm preparing their lunchboxes. And watching the news ... and drinking my coffee.

Out to the bus. We walk our long, very long driveway and then to the road to wait for the bus. They leave, and I walk back. In days like today, I shovel the snow from our front steps and clear the car. And wish my husband were home so he can take over this task. I think 'frack' !! How deep in snow will we be when we can put the Christmas lights out ?? and I keep shoveling snow. Meanwhile little one wants to help. But her mitts aren't the right ones, so I go in to get her the others. Then she wants her shovel ... negotiate and give her the brush to clean the snow off the car. Nope, she still want's the little shovel and decides to takes the mitts off. She want's to make a snowman. I keep shoveling.

Come in the house. I have breakfast.

Catch up on mails and Facebook.

Clear the kitchen.

Go upstairs to give the little one a bath and work on projects .. hey gotta be efficient and use my time upstairs .. won't be going again until the afternoon .. lol.

We come down again and have lunch. Mondays are grocery shopping day so that's what we do. Tuesdays and Thursdays I take her to Nursery School. 

Come back home.

Get ready to go wait for the bus.

Get the children.

Help them do school stuff. Sign agendas, do homework, practice spelling or reading, look at their art, say it's beautiful, decide if the art work is a keeper or goes in the recycling. Tell the oldest one to go practice piano. Can someone open the door for the pups ? Empty lunchboxes, ask why they didn't eat their lunch. Eat their lunch leftovers. Fill up their water bottles and put them back in the fridge. Can someone open the door for the pups again ?

Start thinking about dinner ... decide today I don't feel like cooking. Who wants noodle soup ?? hahhaha .. hotdogs ... kraft dinner ?? C'mon, something easy please !! 

Start with dinner. I've learnt that having an early dinner is better than saying no 100 times when they ask to have a Halloween treat. At least I can put some good food before and they won't ask for too many.

Then, depending on the day of the week, we can just hang out here. Some others we have to go out to extra curriculum activities .. that would be Wednesdays, Thursdays, Fridays, Saturdays and most Sundays. Remember I have four children .. lol.

Then we come back. Put the pups to bed for the night. Then our joke is that we race upstairs .. them jumping every two steps .. me, dragging myself trying to tackle someone's leg so I can try to win this time. Nope, not gonna happen, no matter what I try. Get ready for showers, get their clothes ready for the next day, pjs, book reading, turn lights off, cuddle, give kisses ... get some stuffies.

And now ... (drum roll please !!) Best time of the day for me. Get into bed. Ahhhh !!

To all this you have to add a bit of cleaning. Yes, I do clean the house .. mostly baths and kitchen. And change sheets, that's a job in its own. And now add Christmas decorations. And some odd painting/decorating jobs. Add shoveling snow in the winter. Thinking I should have cleaned the windows (from outside) while the weather was still mild). 

Oh well ... as you can see, my days are pretty normal and they go by quickly. I walk slower, but I can still get the basics done. For that I'm grateful. I'm usually spent at night, but each day is worth it. Yes, I could pack more in, but I can't. And I can live with that. I am alive, I have a beautiful family, I am healthy-ish and in no pain. I look at four adorable faces everyday that still think I'm awesome. With all my faults. I'm still beautiful to them. I still know things, and can give them all sorts of answers. 


My requests for wristbands keep coming slowly. Slowly but surely. The box is getting lighter .. lol. Here's some new pictures of my latest supporters :

Emma, Marc, Ruthie and Tessa - Canada

Mary - Texas

Mindy - England

So happy to see my wristbands are slowly going everywhere. We're flipping the {bird} to MS from all over !! Thank you from the bottom of my heart to each one of you. If you're reading this blog for the first time, please feel free to send me an email to : xxiimmee@hotmail.com with the word 'flip it' on the reference. Let me know how many do you want and your address. The only cost I'm asking for you to pay is my shipping cost. You can find the 'Donate' button on this page.

Thanks again so much. Please feel free to comment on here, I love to hear feedbacks.

Have a great week !!

Update on the 'Flip' Wristbands and other projects ...

Wow !!!

I have to say I'm overwhelmed at the response to the Wristbands. Who would have thought that after all these months of having them sitting on a box, some of them would see the light of day. Lol. 

I wanted to give an update on them. Some of them have crossed the Atlantic and are already in the hands of some brave HSCT veterans, or warriors as we call them. Some others are in West Canada and several others have made it to the US. Others will be send in the mail all the way to Australia !! This is so exciting. I thank each one of you.

Here's some pictures ...

Jamie, Sarah and Maddie - part of my family in Canada

Brooke - Pennsylvania / HSCT Veteran

Gwen - England / HSCT Veteran

How proud you all make me feel !! Thank you again !!

So if you want to get into this 'Flip the world movement', please feel free to email me at : xxiimmee@hotmail.com. Let me know your address and how many would you like. The only cost I'm asking for is to cover posting them, which is minimal. You can use the 'Donate' button in this page and add the amount. It's pretty straight forward. Then, please, PLEASE send me your picture wearing them. 

My days have been busy lately. I've had this burst of energy .. where was it during the summer when I could actually spend time outside !! I had excellent timing and planted some tulip and crocus bulbs two days ago with the 'help' of my three year old. I was holding off just so the squirrels wouldn't eat them. How could I guess that the day after I planted them, I was so lucky that mother nature sent us a brief snowfall and now all the ground is semi covered in snow .. yay !! Ximena 1 - Squirrels 0 !!

So that's done .. I hope to come back from Russia next year and see the flowerbeds full of beautiful tulips, crocuses and hyacinths. Love that time of the year, it's my favourite !!

What else .. as you may have all read in the blog before .. earlier this year I was doing big painting jobs in the house and did most of the rooms. Now I'm giving some finishing touches painting window and door trims and baseboards of the rooms I won't be painting. Trying to finish all that stuff before I go for treatment because when I come back I won't do anything. Just sit down and lay around all day .. lol .. (right family ?). 

I'm also working hard at night trying to finish my two oldest daughters Christmas' stockings. It takes me around 8-10 months to stitch each one of them and now that they are both ready I'm hand sewing them to look like actual stockings. The goal is to have them ready for December. It takes so long to make them that I forget how to actually put the pieces together, so it's a bit time demanding but I'm getting there.

Here's a picture of the one I made for my husband a couple of years ago ...

I must add that this stocking is massive in size !! Didn't think of that and now every time for Christmas I end up stuffing it with socks and some bulky stuff. The children's ones are smaller, checked .. hahhahaa.  I'll update with pictures of the new ones when they are finished.

I've also been decorating the house for Christmas. All of you that have had little children know this. It's not me asking them to start decorations in November, it's them. They can see advertising of Christmas on tv, on the paper, pretty much anywhere. So we're doing one item a day. That's all I could negotiate .. lol.


Thank you again for all the encouragement, words of wisdom and laughter. Life is good.

:)

21 things I'm ok with ...

1. Letting my 3 yr old eat popcorn right after breakfast when I need to get something done in the kitchen/or wherever and I don't need her 'help'.
2. Getting out of the house with unmatching clothes ... it was after all an unplanned outing. It's ok.
3. Leave a project for the next day, it's ok to procrastinate sometimes.
4. Dance and sing like crazy to a song you like, it's great for your children to see their Mum can still rock it !!
5. Cry. It's ok to let it out sometimes. It's ok for your children to see it, we're not invincible.
6. Let your children take over sometimes. Let them feel they are old enough, but then give them tight cuddles and pretend they are your newborn babies and that nothing bad is going to happen to them.
7. Laugh ... it's sooo ok to laugh. A good sincere loud laugh.
8. Stop for a minute, look out the window and get lost in the view. Take time to smell the roses, or look at that tiny bird, or the chipmonk running in a hurry.
9. Feeling sorrow. It's been a hard road, I've had to give up many things but I'm still alive. Then I put my smile on and keep going.
10. I can always rake those leaves tomorrow. It's ok.
11. Listen to your favourite songs very loud !! At home or in the car, let it all out !!
12. Start thinking of Christmas shopping, lists or cards to send in August ... lol
13. Let your children jump on your bed and mess it up. This one has been very difficult for me. I do not tolerate anyone jumping on my bed, don't know why, but last night it just made me happy seeing my children so happy when jumping and messing up every inch of it. 
14. Take a break and buy take off food tonight.
15. Let the rain soak you up sometimes. At least you're able to feel the water fall on your face. So you didn't bring the umbrella, big deal.
16. Not wearing any make-up. 
17. So I don't have that awesome sexy walk anymore cause my left leg isn't the same. Hey, I'm walking, I'm happy !!
18. Asking for help when I really need it. It's ok to accept sometimes you can't do it by yourself.
19. Having a bad day today. Tomorrow will always feel better.
20. Taking a day off everything, sit down and watch a good movie.
21. Laugh with a silly laugh just to make your children laugh histerically. Listening to that laughter will make your soul soar.

Cut the hair, cut the layers ...

So this summer I thought it would be a great idea to cut my long hair. I had thought about it for a while. I wanted to get my children ready for a bald Mum (remember HSCT involves chemo). Take it step by step. I just wasn't sure when to do it. There's lots of time, right ? Treatment is in March.

So one of my older daughters wanted to have shorter hair for the summer too. I take her to the hair dresser and when I'm on the way with her I think .. what the heck !! I'm going to chop mine too. All of it, make it super short. Yeah !! July. Summer in Canada ... not a bad idea. I have to say I was ready to fight this humid summer with my short locks. Yup !! For once I'm not going to be battling the weather with pony tails, have the hair up or having to throw cold water on my face. I'm ready, bring it on summer !! My hair was chopped. Wow, it was really short.

This summer, of course, was the best we've had. Hot and dry days. I think we had one, I repeat, ONE humid day. I got ready for a battle I didn't have to fight. The children ? Nah, they didn't need to prepare for any bald Mum. They can easily do that in a week. Now, I have to say, it was nice not to have to worry much about the hair. Summer, free, swimming all day in the pool .. or well, me sitting by the pool deciding when to get in and not get into any swimming race (that I'm slowly starting to suck at -oh boy, children grow up fast and furious), or unwanted splashing (boy I'm getting old). It was nice to live in that graceful freedom anyway.

I used to use my hair short, you know ? Back then I was in my 30's. I was working full time. Life was at my feet. I also had a ton of less weight. Hadn't had any children so no tummy whatsoever. No worries in the world. I had my pedicure done every month, I went to my weekly relaxation massage. Hair dresser every month. I lived by the cinema so I'd go to watch a new movie every weekend, in the morning so nobody else would be in the room. Eat sweet popcorn .. oh life was good indeed. Did I say I was lighter ? I didn't think of that, did I ?

See ? The trouble is, more than 10 years have passed now. Fourteen years in fact. I've gained weight, I don't feel so graceful anymore, I never ever have pedicures either. I've become very ticklish in my feet and it's just plain embarrassing to kick the pedi girl every time she touches my toes. Not worth it. Tummy I have indeed. I have had four children, and oh boy, that takes a toll on your body. My hair dresser (the good one that I save for awesome occasions) shakes her head when I finally decide to go to her in a desperate need to cover my gray hair. Oh yeah, another gift from childbearing/raising, gray hair. Cause I'm not 'that' old. No, no, this is just genetic .. hahaha. Life is still at my feet, but it just doesn't feel the same. So yeah ! I don't look as awesome with short hair as I remembered. But I pulled it off ... ish. 

One thing I really enjoy though compared to my 30's is that feeling of not caring. I used to produce myself every time I stepped out of my door, just to look good. I worried about that. What shoes do I wear today .. mmhhh .. which scarf ... which jacket ? I wanted people to like me. In my 40's I could not give a shit. I guess it's also different that now I live in a small town in Canada, where nobody pretty much gives a shit either .. lol. In Santiago, where I used to live (Chile), it's just different. I welcome that. So I feel like wearing yoga pants today, awesome. So I don't feel it like wearing make up today, awesome. Who I'm kidding .. make up only comes on when there's a party or special occasion. Even then, the eye shadow only comes on if it's really an important occasion. When I put eye liner and mascara I get the big WOW's from my children .. Mama is dressing up !! hahhhahaaa. I no longer choose a jacket, it's whatever is hanging in my hook. I pretty much use the same shoes, easy black-go-with-everything slip on shoes, awesome !! I do still like purses though. Everything might look black and gray in my outfit but oh the purses are gorgeous .. hahhaa. So I've saved some money on the clothing and make up area.

So here I am ... with now 'shortish' hair .. growing in a way that isn't too awesome. Do I chop it again ? Does the gray hair grow faster because my hair is short or has it always looked this bad after three months ? Is it a proportion thing ? It's a long wait until my treatment in March ... and there's a looong winter ahead. Crap, I didn't think of winter coming, did I ? I always refuse to wear a hat when it's cold cause it flattens my hair .. well, there's no choice this year ... and the next for that matter. Maybe I'll let it stay like this and at least a bit of hair will come out of the hat ... 

Everyone else has been very graceful and they all say I look good. Thanks everyone. Family and friends, it will get better I promise. I'm sure I'll wake up from this 'I don't give a crap' stage and I will take care of myself a bit more. Thank you to my family and friends in Chile. When I got to visit last August everyone also behaved and lied to me saying I looked great. Thank you. I appreciate every effort. 


On a side note, I have to give a HUGE thank you to a great response to my idea of the Wristbands. Thank you from the bottom of my heart !! I have some bracelets that will be mailed today to the US, England and some awaiting to go all the way to Australia !! You know who you are !! Thank you !! I can't wait to get those pictures and post them here. You've all been so generous too. Makes me feel amazed at life, at people, at how close we all are after all. I still have a box full of them, so please keep the orders coming. 

:)

Flip Wristbands around the world ...

First of all ... I want to thank so many encouraging comments from all over the place. Not here, for some reason, nobody comments here in the blog, lol .. but I have read so many sweet words coming from the HSCT forum, the Russia forum (where I'll be going next year) and from friends and family that I copy the link to this blog. I read each one of them and be sure that each of your words makes me stronger. It's so reassuring to hear people like what I write, considering I was about to delete it. Thank you from the bottom of my heart.

Also, some people have asked me to include a Donate button. Which now you'll find in the front of the blog. I'm not asking for donations, unless you're wealthy and don't know what to do with the extra cash. But this brought to mind another idea. As I've totally given up on fundraising with my bracelets (I really suck as a salesperson -my 9 yr old daughter is way better than me), an idea popped in my mind.

What if someone out there wants to sport one of the 'Flip the {bird} to MS' bracelets. I'm not asking anyone to pay for it. What I'm asking is to just donate the shipping cost (so I don't go backwards on this). Hence the donate button. There's no set amount, so each can donate whatever depending where you live. I've done it through Paypal and it's pretty easy. As long as you have a credit card, you can do it. You don't need to subscribe to anything. The cost to mail it in Canada is about C$2.00. It was supposed to be cheaper but can't seem to pack the things flatter enough in the envelope and they charged me more, pfttt. I'm assuming the cost will be C$3.00 for the US and around C$5.00 International (just roughly doubling the cost of a regular letter).

So what do you think ??

I'd like to have a picture of friends and people I don't know personally wearing my wristbands from all over the world. And when you get them in the mail, please take a picture of you wearing it and email it to me. I can include it here, with or without your name, your call. Wouldn't it be neat ? There's some family and friends that already have them. Some here in Canada and most down in Chile. Can you please send me a picture of you wearing it too and I can put them in the blog ? I'll start with mine ...

By the way ... I'm talking about the blue bracelet. The other has nothing to do with this, my dear cousin had it made for me and that's only mine .. lol. Had to put this disclaimer, don't want any disappointed customers.

So, if you're interested in this idea, let me know. Send me an email to : xxiimmee@hotmail.com (don't laugh at my email address please -I created it long ago and I'm guessing I was bored) with 'wristband' or 'flip the bird' on the reference. Give me your address, let me know how many you want and donate the shipping fee in this page.

Oh I'd love for this bracelets to travel. I've had them stacked in a box for months with nowhere to go .. lol. Please feel free to share this blog anywhere you think people will get something out of my journey. 

Oh, I found a picture of my dear friend in Chile, here it is. Hey it almost looks fashionable if you accessorize it !!

Cata - dear friend in Chile

So please be well, thanks again for all your kind words. Thank you also for all the HSCT Warriors that are right now in Moscow. You got this !! And best wishes to the ones that have recently gone home after having HSCT. Take care of yourselves and take it easy. As someone said, it's not a sprint, it's a marathon.

:)

21 Random things that I regret not doing ...

1. Giving more kisses and hugs to my family and friends when I lived at home (Chile). It's never enough.
2. Walking on the sand every time I was close to it. Right now it's just a tripping hazard and way, I mean, WAY too much work.
3. Eating more empanadas, tortas de milhojas, cuchuflis, chirimoyas, alcachofas while I had them easily available.
4. Giving a bit more effort to my track and field days at school. Sorry Pedro (coach), I just didn't want to do the 5 laps around the school to start practice and ended up hiding in the bathroom so I could make it back in a glorious not-so-exhausted way.
5. Skydiving ... no way I'd do it now ... would not be able to get up again .. lol.
6. Run.
7. Be a famous paintor.
8. Tour Spain waaay more when I was there. Should have gone up to Barcelona. And heck, should have jumped on the train and see some of France too. 
9. Come out of my shell in highschool.
10. Finding that 'square ball' a client wanted to find for her son that Christmas. I was working at the toy department at a chain store for the season ... hahaa ... square ball.
11. Try yoga.
12. Skate more on ice. No way I'm even thinking of doing it now. 
13. Do my road trip to the north of Chile on a motorcycle .. yeah baby !! Now I'd have to do it in a tricycle and maybe just for two hours in the morning or I wouldn't be able to do anything else the rest of the day.
14. Say more I love you's. Give more kisses. Give more hugs.
15. Giving hell to that awful guy that stole my necklace on the bus (micro), when I was coming home from a day at Manpower (College).
16. Open my mouth and answer back to someone that is giving me hell for a stupid reason. I tend to be shell shocked and can't mumble a word. 
17. Giving more effort in my only gymnastics class back then when I was little. 
18. Keep up on my journaling ... should have given my brothers more thrilling things to read .. yeah, I know you were reading my endless lists of which boys I liked most.
19. Eaten my chocolate easter bunnies. I insisted in keeping them as decorations on my shelves until one day I realized all the backs were already eaten .. 
20. Using any sunscreen in my teen years. I remember having very bad sunburns .. I know I'm going to pay for that one day.
21. Given my dear Mani (Grandmother) more kisses. I still miss her dearly. She taught me many things, one of them to not have regrets.