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. 

:)

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 !!

Another month closer to HSCT ...

Oh my Goodness, time flies.

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

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

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

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

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

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

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

I am the cause she chose.

Thank you from the bottom of my heart Julie.

One step closer to Russia.

Pre Easter preparations ...

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

Thank you's before all the madness ...

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

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

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

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

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

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

:)

Fresh coats of paint ...

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

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

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

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

On my road to Russia ...

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