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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 ...


Pirogov Hospital in Moscow

Dr. Fedorenko

Anastasia
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. 

:)



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.

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.

:)

Tuesday, October 21, 2014

A bit of a catching up ...

I thought I should try to get everyone caught up on how my MS has affected me. As you all might know, MS is very different in everyone. The symptoms are all over the place and can affect each person differently. Some may have pain or no pain at all, fatigue, vision, balance problems, etc.

In my case, unknowingly, my first symptom was back in 1997. I was working full time and one of my jobs was answering the phone for the General Manager. Well .. one day I couldn't speak. Whaat ?? Phone rings, I get it and can't formulate any answers. I remembered I was puzzled and amused at the same time .. wtf. I was able to say small sentences and words .. just couldn't formulate a long phrase. My doctor at the time told me it was the hormones I was taking. That he had read about those side effects but never actually met anyone that had them. Great .. wohoo, I'm so lucky !! Anyway, that went away in a couple of days .. phew. And as many can testify, I recovered 100% of my speaking abilities .. lol. Remember those days Cata ? 

Second symptom, 1999. I start seeing in shadows with my left eye. I could see, but it was dark ... like it was night time on the street sort of thing. When this happened I was in Spain. I had no doctor to go to so I just winged it. My vision came back to a 100% after a couple of days. When I returned, my doctor said (drumrolls please ...) stress. Of course .. it was a stressful time in my life anyway.

Now, keep in mind, these could or couldn't have been the first signs of my MS. Nobody knows. 

Then ... flash forward to 2007. Had a 2 year old and a 6 month old baby. Those times that you do a lot of stuff with only one hand cause you're holding your baby with the other. In my case, with my left arm. I start loosing sensitivity of my left arm, starting with my fingers. After a few weeks, I couldn't feel my forearm and it was getting to my left shoulder. Went to Emergency, just to make sure I wasn't having a heart attack or something, and the doctor said ... pinched nerve. Stop doing what you're doing. It will be alright. Alright then. Couldn't stop holding my baby while I was doing the rest of the things anyway, but tried to take it easy. I have to say that I did recover the sensitivity in my arm, but the tips of my fingers were tingly and after a few months I totaly lost sensitivity in them. Until today. For example, if I want to feel the texture of something, I have to feel it with the fingertips of my right hand. Hey !! I can live with that, no biggie. Right ?

Then ... let's jump to early 2009. By then I had a 4 yr old in her first year of school, a 3 year old in Nursery School and a 1 yr old at home. Yes, busy times. I remember walking back home after volunteering at school with my daughter. Short walk, really .. maybe a 10 minute walk. By the time I'm getting home, my left leg gets all uncoordinated. I remember thinking ... (yup, you guessed it) wtf !!! Since then ... it started to happen every time I'd do a long walk. For the next year my walking distance was getting shorter until my leg started acting funny again. Mental note, ask my doctor for my annual check-up. I think I missed my doctor appointment that year, so left it for the next. Again, no biggie .. must be something simple.

By the end of 2011, I go to my doctor and tell him about my leg. Which at this point was funny and the long walks were long gone. I was more efficient now. I suggest all the simple solutions, blood circulation problems, maybe if I use special socks ... varicose veins ?? He did simple tests, looked at me kind of puzzled and referred me to a Neurologist ... WHOOOTTT ??? That time in my life was awful. I started digging the internet for more information ... trying to look for another diagnosis .. couldn't be MS, please no !! So by the time I go to the Neurologist, he sends me for un-ending tests, MRIs and such. He gave me the diagnosis. Tentative MS. I remember I was puzzled at first. Couldn't say anything and then I just started crying ... balling actually. I had MS. February 2012.

So this nice Neurologist, sends me to the MS Neurologist. He tries to put me on drugs right away, I rather try other things first. Tried steroids, muscle relaxing drugs, phisio, gym, yoga, nothing works. Suggests to start on a drug to slow my progression. Don't let MS creep on you he said. I just wasn't ready. Took my time, yes, maybe I was on denial. But I needed my time. I needed to grieve, to be mad, depressed. I needed to see where I would be a year after. 

I still had to tell my family. Had to tell my Dad. All the way in Chile. And we were planning to spend Christmas there that December. Didn't want that visit to be about my MS. So found the time and told them on the phone. Felt better. Told my husband's family here at home ... another sight of relief. Had a wonderful Christmas with familly and friends. Wearing shorts and eating barbecue (It's always a hot Christmas in Chile -it's summer over there). Look at the pictures ... we're wearing short sleeves in December !!




By the year after (2013) I realize I was still walking .. but now needed a cane. I remember my girls tried to pimp it and put a lot of glitter stickers on it, it was hilarious. By now my balance was getting worse. Wall surfing around the house. No need to drink now, who needs that. Dizzy feeling without the effort ... lol. A big relief really. My MS wasn't aggressive. Just a slow, annoying, relentless MS. Yay !? Right before Christmas I got my disabled permit on the mail. It felt so permanent. So I shed some tears, and maybe some more. But boy it felt good when I used it to go shopping at the busy malls that time of the year. Thank God !! 

By the end of that year I'm ready to start a treatment. Good timing according to my Neurologist. A new drug has been approved. Won't need the daily needles anymore. Now they are just capsules. I can do that. Right ? 

I think now that I've updated you on my MS I must stop here. Things get exciting in the next post. It will be of how I found out about HSCT. No technical stuff, for that you can google it. Wikipedia has a very good explanation, although a bit outdated. 

:)


Friday, October 17, 2014

5 months and counting ...

I had seriously thought of deleting this blog.

Don't know if I'll ever have the courage of making it public. Once I do that, it will be out there. My thoughts will be out in the universe. My MS will have actually existed. Tangible. I don't want it to ever had happened. I wish. Can't be done though.

Then I think maybe my words will help someone feeling like me. Or maybe I'll put a smile on someone's face. Maybe some people will like my writing.
Then, before deleting it, I started reading my older posts. And for some reason I feel someone has to read this. They are not bad at all .. lol.

Anyway ... I think my last post is after Easter. Wow ... all summer went by. It was nice to enjoy our swimming pool and the children rarely stopped in the house. They were swimming most of the time. It was a busy summer. Having three of the children enrolled in soccer. But it was a good summer. The weather was pretty good too. Not too humid, not too hot, it was actually perfect.
Didn't get many of my projects done outside of the house ... but there's always another year, right ? We went to the cottage for a couple of weeks and had fun. I twisted my ankle on the rough rocks but otherwise I was ok. I'd say the highlight of my summer was having my husband's family over for his birthday in June. Then the excellent results of the children at the end of the school year. Then the cottage in July. Then my visit to Chile for my Dad's 80th birthday. How I love my family in Chile, I've missed them so much !! I realized I can keep in touch with all the ones that have an i-phone through my i-pad. That, for some reason, makes my life much better. It was a quick, intense 10-day visit. But I was by myself, and I loved it. Missed my little ones dearly, but I think I needed that. They needed that. I'm grateful to my husband that made it possible. I was able to go and share that important moment with my Dad and brothers. How I love those three. And my girls .. cousin, step sister and friends .. oh how I miss them.



So, September came, school crazyness began and now in October we're settling down to our routines. Life is good right now, and I'm grateful for it.

In the Russia front, everything is working too. After my visit to Chile, I told my family about HSCT. Answered lots of questions and what I found from everyone, was support. All the way. I thought I was going to have to 'sell it' a bit more ... but I was so wrong. Support and love is all I got. I gave all my closed ones one of my bracelets (that made it by the way) and they are all wearing them. When one of my brothers heard about my plan to go to Moscow, he said that was in his bucket list, and what better timing than when I'm going. So I'm lucky enough to have my brother with me for the first two weeks of treatment. Feeling blessed. Got my tickets already. My brother will take care of the Vega Hotel. But what made me most happy is that because I have dual citizenship (Chilean-Canadian) if I show my Chilean passport when I get to Russia, I need no visa. Whooot ?? Little things that make life good.


So now I'm working on my packing list, encouraging patients that are in Russia right now, talking to future patients that will be there at the same time than me, keeping strong. I was thinking I should have a video of myself 'surfing' around the house and going up the stairs as of now. And post them ... just to have them so I can compare. I really hope I can stop this. Not get any worse. I keep telling myself this.

Wow !! Someone had a lot to say .. haha.


Keep your chin up everyone !!