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.
Tuesday, November 11, 2014
Thursday, November 6, 2014
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.
:)
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.
:)
Wednesday, November 5, 2014
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 !!
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.
:)
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 |
:)
Saturday, November 1, 2014
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.
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.
Wednesday, October 29, 2014
Moscow, where the magic is going to happen ...
Well ... when I found out about HSCT I read a lot, A LOT about it. I have been researching for a better treatment for MS when I was first prescribed an MS drug by my Neurologist. He told me one of the side effects was brain cancer, or it could cause death ... I first thought, what are the odds of that happening to me !! But then I thought .. wtf !! So you're telling me I have a 2% chance of it working. And by saying 'working' you really mean slowing down the progression. Wow ... so .... it's not really going to help the inevitable. If I'm lucky it will just slow it down .. mhhh ... let me keep thinking about it.
So I kept reading, surfing the internet, looking everywhere. I read about many stem cell treatments and even though I read they sounded kind of bogus 'ish', they weren't cheap .. and after 6 months people seemed to have to go through it again, and pay lots of thousands of dollars again .. mhhh .... let me keep thinking. But I couldn't find anything better.
Up comes March Break (schools are on a week break) my husband and I randomly think of taking our children for a road trip and drive all the way to Disney in Florida (I'm talking of a two-day-drive-if-we-do-it-fast type of trip). Wohooo !!! .. I think, may as well do this when I can. One of those nights that everyone is tired out and I have nothing better to do, yes, you guessed it, I kept reading on the internet. And come across a group on Facebook talking about HSCT. HSCT stands for Hematopoietic Stem Cell Treatment. I'm not going to lie to you, when I heard it involved chemo it scared me a little. I remember thinking .. oh boy, this is serious treatment. After many MANY silly questions to the Adm/Guru/Scientist/super patient man that started this group, based in science and actual facts, I have to confess chemo is the last of my worries. Chemo is necessary to erase these bad cells that cause MS. And the sooner you do it, the better results you may have. MHHH ... and I kept thinking about it .. not for too long. It just made total sense to me. HSCT is giving me 80% of halting my disease. Stopping it. 80%. There's also the chance to revert or improve some of your current symptoms. But hey !! 80% chance of just staying like this. I still move around, are independent, no one is helping me to go to the bathroom or have a shower. It ain't pretty, I'm not saying that, but I'm still me. 80%. I'll take it !!
I say some days it isn't a pretty sight to see how I get some things done. I manually help my left leg to get into those pants ... or kick my left foot on the wall to get that (slide on awesome) shoe ... or everytime I get in the car I grab my left leg and put it in so I can hop in. I found a very great way to get the laundry baskets up and down the stairs. When I go up, I carry it and put it on every second step and go up the two steps. To come down .. easy, just do the same backwards !! Brilliant, right ? I discovered this 'technique' (I'm going to call it that way) when my youngest one was still a baby. Walking down the stairs with her in my arms (like every Mom has done it forever) it just didn't seem safe enough .. my balance was getting crappy and didn't want to fall down with a baby in my arms. So, I started going down the stairs backwards, baby on left arm and holding onto the railing with my right. Simply awesome. Checked. The children did kind of laugh at the beggining but as they always do, they got used to it and that's how Mum does it. Period. No more questions asked.
Anyway .. totally out of topic ... but that's how I found about HSCT. I guess it's not for everyone, it's hardcore, and tough on your body. I will loose my hair but hey !! I've lost my dignity so many times too .. and that doesn't stop me either .. hahhahaa. It's been said the recovery is like a roller coaster but seriously, I've been through so much, that this doesn't scare me either. I'll have to sleep and wash my hands a lot when I come back. Eat healthy and avoid getting colds from my children .. I can do that too !! But the benefits could be so much greater that it's totally worth the try. And I'll give it my best.
Anyway .. under 5 months to go now.
This is where the magic will be done ...
Now the landscape of the Hospital might be covered still in snow by the time I go. But the people, the doctor and nurses will be the same. Everyone that has been there can only say good things about them. Dr. Fedorenko smiles and cries with you. He really wants to heal you. Which, let me tell you ... it's a blessing to know. Anastasia has been working with him for months now. She was once his patient with MS going for HSCT herself. Look at her, gorgeous, happy, a bubble of energy as many people say. I could put so many other pictures, but this is what sums it all up. I should have found more pictures of the nurses too. Most of them do not speak any english but will try their best to understand your needs.
And then, there's the other patients that will share my journey. And their families/careers that go with them. I'm sure I'll meet some Australians that have flooded Moscow lately in search of this treatment. I have met so many wonderful people already. Finding HSCT has been a blessing in itself. I've been making bonds without looking for them. I've made friends. I've followed others' journeys through this. I wish them all the best. I thank each one of them for letting me peak on what they are going through. I've also met other people like me, on the way, to Moscow and other facilities that offer this. It's exciting.
By the way, HSCT is currently in Clinical Trials in Canada. Dr. Freedman is in charge of it in Ottawa. Sadly I'm too well (their words) for this at the moment. They are treating people out of the Study but the requirements are very strict. It might be 10 years until is widely available for Canadians. It's also in Clinical Trials in the US, England, and Australia. It is going to happen, just not soon enough for me and for many seeking this treatment.
I hope this information makes you feel closer to what I'll go through. I hope someone with MS will feel intrigued in HSCT and read about it.
:)
So I kept reading, surfing the internet, looking everywhere. I read about many stem cell treatments and even though I read they sounded kind of bogus 'ish', they weren't cheap .. and after 6 months people seemed to have to go through it again, and pay lots of thousands of dollars again .. mhhh .... let me keep thinking. But I couldn't find anything better.
Up comes March Break (schools are on a week break) my husband and I randomly think of taking our children for a road trip and drive all the way to Disney in Florida (I'm talking of a two-day-drive-if-we-do-it-fast type of trip). Wohooo !!! .. I think, may as well do this when I can. One of those nights that everyone is tired out and I have nothing better to do, yes, you guessed it, I kept reading on the internet. And come across a group on Facebook talking about HSCT. HSCT stands for Hematopoietic Stem Cell Treatment. I'm not going to lie to you, when I heard it involved chemo it scared me a little. I remember thinking .. oh boy, this is serious treatment. After many MANY silly questions to the Adm/Guru/Scientist/super patient man that started this group, based in science and actual facts, I have to confess chemo is the last of my worries. Chemo is necessary to erase these bad cells that cause MS. And the sooner you do it, the better results you may have. MHHH ... and I kept thinking about it .. not for too long. It just made total sense to me. HSCT is giving me 80% of halting my disease. Stopping it. 80%. There's also the chance to revert or improve some of your current symptoms. But hey !! 80% chance of just staying like this. I still move around, are independent, no one is helping me to go to the bathroom or have a shower. It ain't pretty, I'm not saying that, but I'm still me. 80%. I'll take it !!
I say some days it isn't a pretty sight to see how I get some things done. I manually help my left leg to get into those pants ... or kick my left foot on the wall to get that (slide on awesome) shoe ... or everytime I get in the car I grab my left leg and put it in so I can hop in. I found a very great way to get the laundry baskets up and down the stairs. When I go up, I carry it and put it on every second step and go up the two steps. To come down .. easy, just do the same backwards !! Brilliant, right ? I discovered this 'technique' (I'm going to call it that way) when my youngest one was still a baby. Walking down the stairs with her in my arms (like every Mom has done it forever) it just didn't seem safe enough .. my balance was getting crappy and didn't want to fall down with a baby in my arms. So, I started going down the stairs backwards, baby on left arm and holding onto the railing with my right. Simply awesome. Checked. The children did kind of laugh at the beggining but as they always do, they got used to it and that's how Mum does it. Period. No more questions asked.
Anyway .. totally out of topic ... but that's how I found about HSCT. I guess it's not for everyone, it's hardcore, and tough on your body. I will loose my hair but hey !! I've lost my dignity so many times too .. and that doesn't stop me either .. hahhahaa. It's been said the recovery is like a roller coaster but seriously, I've been through so much, that this doesn't scare me either. I'll have to sleep and wash my hands a lot when I come back. Eat healthy and avoid getting colds from my children .. I can do that too !! But the benefits could be so much greater that it's totally worth the try. And I'll give it my best.
Anyway .. under 5 months to go now.
This is where the magic will be done ...
 |
| Pirogov Hospital in Moscow |
 |
| Dr. Fedorenko |
 |
| Anastasia |
And then, there's the other patients that will share my journey. And their families/careers that go with them. I'm sure I'll meet some Australians that have flooded Moscow lately in search of this treatment. I have met so many wonderful people already. Finding HSCT has been a blessing in itself. I've been making bonds without looking for them. I've made friends. I've followed others' journeys through this. I wish them all the best. I thank each one of them for letting me peak on what they are going through. I've also met other people like me, on the way, to Moscow and other facilities that offer this. It's exciting.
By the way, HSCT is currently in Clinical Trials in Canada. Dr. Freedman is in charge of it in Ottawa. Sadly I'm too well (their words) for this at the moment. They are treating people out of the Study but the requirements are very strict. It might be 10 years until is widely available for Canadians. It's also in Clinical Trials in the US, England, and Australia. It is going to happen, just not soon enough for me and for many seeking this treatment.
I hope this information makes you feel closer to what I'll go through. I hope someone with MS will feel intrigued in HSCT and read about it.
:)
Saturday, October 25, 2014
Other uses for a cane ...
I've been using a cane for a while now. I think I started doing it about two years ago. I realized that my walking the children to the bus wasn't too pretty anymore. My stride wasn't as provocative if you will. It was a pretty close and direct walk. But I tended to go to my left a lot. And for those who are wondering, nope, I wasn't drinking alcohol first thing in the morning, or after lunch for that matter.
I remember going for Christmas shopping one day and even though it was a quick and efficient trip, I ended up with a horrible pain in my neck. Now that I think about it it could have also been all the money spent ... hahaaa.
So I gave in and I had to go buy my black cheapest cane I could find. As you may have read before, my girls got it all pimped with stickers and jewels, lovely, now it would really stand out. And then I became 'the lady with the cane'.
It's comical, one time I got the look of a little child who with no shyness asked me if I really needed it or I was faking ... Hahhahaaa. I just told him I only use it on the days I will be doing special magic tricks. You should have seen the big eyes he opened.
Lately my dear cane has been renamed by my 6 year old son. It has become 'super cane' ! Yes, Supercane as I will call it now, serves for many things. First and most importantly, it is used sometimes to reel my four children into the right direction to go. Before crossing a road I make sure all my chickies are alligned or have stopped while we are looking for any cars coming our way. It can push elevator buttons or open automatic doors pushing the disabled button. Oh yeah !!
It can also pick up stuff from the back of the car. Or if you use the hook part of it it can pick up diverse stuff from the floor. Yes, my life has become more efficient. The best part (if I can call it best) is when I get to my preferential parking spot. Sometimes I feel the odd look from someone parking right beside me. As if they are thinking ... what the heck ! She looks so young and gorgeous (lol, may as well give myself some love). Then I slowly pull down my shade showing the disabled sticker (thinking ... yeah baby !! I got one of those ! I'm officially authorized to be here !). And then comes the real treat if anyone is still looking. Then I get out of the car and pull out Supercane !! Yeahhhh !! I belong here people !! Hahhahaaa.
Then there's the little mental competition/evaluation, of who else is parked in the 'preferential' zone. Let's call it like that. You see the elderly, well, they almost deserve it just because at that age it's fair. Or the really screwed that even I offer help to get to the car. Or the ones like me, they don't really should or look sick, until you see us walk. Yeah, most time I loose that competition, but I'm grateful I can have it. I always know the shortest walking route and where the elevators or washrooms are (I do have four children after all and must be prepared). It makes me really mad if someone makes me walk in circles (I need to save any extra steps I give).
I've found Supercane is also useful to keep little children entertained. They can use it as a weapon, as a giant sword, it can clear bushes while on a nature walk. It can test snowy paths looking for irregularities. It was very useful this past winter. It was very icy and it really helped me stay up instead of falling on my head. It can also push little frogs out of our swimming pool area. Don't judge me, I'm a city girl at heart and only hold those things when my children are around, cause I need to show them I'm brave ... lol. The last awesome thing Supercane did for us so we didn't get soaked, was at the indoor swimming pool. Someone left a shower on and seeing the water running without a purpose was driving me insane, so Supercane was used to turn the shower head the other way and then my daughter was able to turn the water off. I say my daughter did it because wet surfaces are a no-no for me. Too many risks of slippery situations, better send the little one for that.
I'm getting to know how this blog thing works. I added the feature to sign up and receive each entry by mail. Which you're welcome to do. There's also the translation feature in case someone wants to read this in a different language. I hope it works, let me know otherwise.
Thank you so much for all the kind words. Many people I never expected have written me messages of support and love. Well, right back at you, thanks to all of you I've become who I am. You all have a piece of my heart and I truly thank you for joining me in this journey.
The way I see it, is choose to smile every day instead of crying.
I remember going for Christmas shopping one day and even though it was a quick and efficient trip, I ended up with a horrible pain in my neck. Now that I think about it it could have also been all the money spent ... hahaaa.
So I gave in and I had to go buy my black cheapest cane I could find. As you may have read before, my girls got it all pimped with stickers and jewels, lovely, now it would really stand out. And then I became 'the lady with the cane'.
It's comical, one time I got the look of a little child who with no shyness asked me if I really needed it or I was faking ... Hahhahaaa. I just told him I only use it on the days I will be doing special magic tricks. You should have seen the big eyes he opened.
Lately my dear cane has been renamed by my 6 year old son. It has become 'super cane' ! Yes, Supercane as I will call it now, serves for many things. First and most importantly, it is used sometimes to reel my four children into the right direction to go. Before crossing a road I make sure all my chickies are alligned or have stopped while we are looking for any cars coming our way. It can push elevator buttons or open automatic doors pushing the disabled button. Oh yeah !!
It can also pick up stuff from the back of the car. Or if you use the hook part of it it can pick up diverse stuff from the floor. Yes, my life has become more efficient. The best part (if I can call it best) is when I get to my preferential parking spot. Sometimes I feel the odd look from someone parking right beside me. As if they are thinking ... what the heck ! She looks so young and gorgeous (lol, may as well give myself some love). Then I slowly pull down my shade showing the disabled sticker (thinking ... yeah baby !! I got one of those ! I'm officially authorized to be here !). And then comes the real treat if anyone is still looking. Then I get out of the car and pull out Supercane !! Yeahhhh !! I belong here people !! Hahhahaaa.
Then there's the little mental competition/evaluation, of who else is parked in the 'preferential' zone. Let's call it like that. You see the elderly, well, they almost deserve it just because at that age it's fair. Or the really screwed that even I offer help to get to the car. Or the ones like me, they don't really should or look sick, until you see us walk. Yeah, most time I loose that competition, but I'm grateful I can have it. I always know the shortest walking route and where the elevators or washrooms are (I do have four children after all and must be prepared). It makes me really mad if someone makes me walk in circles (I need to save any extra steps I give).
I've found Supercane is also useful to keep little children entertained. They can use it as a weapon, as a giant sword, it can clear bushes while on a nature walk. It can test snowy paths looking for irregularities. It was very useful this past winter. It was very icy and it really helped me stay up instead of falling on my head. It can also push little frogs out of our swimming pool area. Don't judge me, I'm a city girl at heart and only hold those things when my children are around, cause I need to show them I'm brave ... lol. The last awesome thing Supercane did for us so we didn't get soaked, was at the indoor swimming pool. Someone left a shower on and seeing the water running without a purpose was driving me insane, so Supercane was used to turn the shower head the other way and then my daughter was able to turn the water off. I say my daughter did it because wet surfaces are a no-no for me. Too many risks of slippery situations, better send the little one for that.
I'm getting to know how this blog thing works. I added the feature to sign up and receive each entry by mail. Which you're welcome to do. There's also the translation feature in case someone wants to read this in a different language. I hope it works, let me know otherwise.
Thank you so much for all the kind words. Many people I never expected have written me messages of support and love. Well, right back at you, thanks to all of you I've become who I am. You all have a piece of my heart and I truly thank you for joining me in this journey.
The way I see it, is choose to smile every day instead of crying.
Wednesday, October 22, 2014
And all the tripping ...
In my last post I forgot to mention all the tripping I had before being diagnosed. Many of you might have been in my situation.
All of a sudden I just started tripping. With air, with myself ... with my children, with a fly .. who knows. The first time I remember happened was in the summer of 2011.
My oldest daughter was performing at the end of the year concert. She was playing the violin. So I leave the other three sitting in one corner and go to the first row and start filming. Oh, she did great, so proud !! She finishes, I get up, start walking back to my children and see that my son (3 years old at the time) is coming to love-tackle me. I know it's coming, I'm ready and phaaaattt !!! on my face !!! He actually tackled me and I subsided !! Hahaha ... I heard the 'ughh!!' from the audience in the back. It's quite funny to remember actually. So, like any other mother of little children, I proudly got up and gave the appropriate laugh.
Now that I remember, that same day when I was getting all the stuff in the car, before heading to the concert, I fell on my knee when getting to the car. Darn !! Made a hole in my white pristine pants ... had to leave everyone in the car ... Mommy has to go change quickly .. lol ... and back out I came with fresh pants on.
The last fall I remember was during the winter in 2012. We were all in the ski slopes .. everyone else skiing, me taking care of my 1 year old. I remember walking to the car with my sister in law, holding my baby girl and towing a sled with all the skies with the other hand. So we were chatting and suddenly ... BAM !! I'm down for the count !! I am going to blame this one on a hole covered by snow that it was impossible to be seen ... but I fell nonetheless. And I remember the look of horror in her face when she looked beside her and I had dissapeared .. lol. I must say that my daughter was still safely in my hand, no damage made.
Then, there were all the ankle twisting. The one I remembered the most was one that happened one morning. We are all getting ready for my oldest daughter's fieldtrip to the Zoo. We as parents had volunteered to help the class and that way the other three children in our family got a free trip to the Zoo. Perfect. So I'm getting everyone ready, dressed, ponytails made, beds made .. running around. I enter my bedroom and from nowhere BAM !! I forgot to 'think' about walking properly and lifting my left foot .. yes people, for the ones that don't understand this, in my case I have to think about doing this everytime I take a step. If I don't I look like a zombie walking. Sometimes I'm just not in the mood of thinking this all the time and just walk with a stretched leg. Way less work, but also way uglier .. lol. By the way .. sometimes my 3 year old is playing house and she's the Mommy. So she has a purse on her shoulder, cell phone in her hand and limps of one leg. Yep, she's walking like Mommy. For some reason this does not hurt my feelings. That's all she knows. Bless her ...
Wow .. off topic ... ok, so I forgot how to walk and twisted my left ankle. And by twisting it I mean .. REAAALLY twist it. I did a number this time. And can't blame any outsiders for this. All my own fault. Oh no, cannot happen today, we have a long day ahead of us. So, I do as many other times ... I just suck it up and say, I can do it. I was in PAIN !! Ugly pain. Sore throbbin pain all day. But I did go to the Zoo, pushed that stroller, skipped, hobbled and coped. In retrospect, maybe I should have stayed home and everyone else would have had an equal good time. But that's the way I was. Didn't want to surrender.
Anyway .. I thought all the tripping would be a good thing to add.
I've stopped tripping now. I am much wiser now and have learnt my lessons. Now I'm almost an over thinker and I rather be slower than faster but with the option of falling.
:)
Subscribe to:
Posts (Atom)