Category Archives for "Michele’s story"

Goal Setting

I have been meaning to write my post for January for some time now, so please excuse the delay; as we’re already at the end of February! My focus for this blog post, as we are now well into the New Year, is resolutions and goal setting.  First, let’s rewind a bit so I can wish everyone a Happy 2012! I hope everyone enjoyed the holiday season. Now, onwards to my thoughts for the New Year!

I am not one to set New Year’s Resolutions, and if you are I commend you, especially if you end up following them! I do however like to set goals, and do my best to work towards them, without beating myself up if I don’t achieve them. When I was first out of the hospital last year my physiotherapist expressed how important it is to write down goals, and try to work away at them. I must admit that during that time my only goal, or more so hope, was to be able to walk and have my pain stop. I did not know how to achieve that at the time, and though I am used to setting goals, I was very overwhelmed by the new hurdle I had to overcome.

This was exacerbated by the fact that thinking coherently and goal setting was seemingly much harder than it had ever been before.  Brain fog often gets the best of us living with MS; and I can say that my memory, writing, and follow through skills were not at their best when I was in relapse mode. However, I didn’t want to give up, even though I was extremely frustrated.

Regardless of living with MS I know many friends that feel lost in life. Don’t we all from time to time? Friends would often try and commiserate with me during these times, trying to make me feel better about the struggles I was faced with, letting me know that they too had problems. While this was appreciated, I feel that – due to their subjective nature – cognitive challenges are so much more of a struggle than people realize.

With this in mind, I worked through various methods to give myself daily motivation and outline my weeks to help feel a sense of accomplishment (gotta love checking things off a list!). I even added a whiteboard to my bathroom to write notes and inspirational quotes. I figured that I frequented the washroom enough that it was a great place to have a reminder that life wasn’t all that bad.

The list of ‘things to do’ lived on the fridge, another place I visit often : ) You get hungry, need a snack and you can re-visit your weekly/daily/monthly list of things to do, food for fodder!

My friend even bought me a huge calendar where I put down doctor’s appointments and other things I had to get done in the month. The best part about that is she bought me a big stack of stickers to give myself gold stars and smiley faces galore! I am a very visual and creative thinker so this was great. Some people even make vision boards, which I think is super cool and would be fun to do!

What I am trying to illustrate to you is that sometimes it takes several methods to sort out your madness; and regardless of how you go about it, setting goals and writing things down really does help, especially when your cog fog rolls in so thick you can barely remember your phone number. Don’t give up trying, that is key. I took a break from things, as it does get hard, but my notes were always there for me to reflect on.

I found this great article on goal setting that I think you should check out:

http://www.mindtools.com/page6.html

It really helps you think about how to start setting goals and working towards them. The MS MonSter is always going to be part of my life, and I know I have to work hard to try and manage not only the medical side of the illness, but also the social and emotional side of things. So far all my chicken scratch notes and lists, as scattered as they may sound, seem to be helping : )

I hope that you check out that link and get some good ideas for setting some goals for 2012!

Happiness and Health to all in 2012,

–       Michele

 

PS: I would love to hear about your ways of goal setting, Please feel free to share : )

1

‘Tis the Season to be Reflect…

 

December is an interesting month, don’t you think?

While not all of us celebrate Christmas, it can definitely be hard to escape.  For many, Christmas is about sharing, gathering, giving, and joy. We look back on fond childhood memories, watch classic Christmas films, indulge in holiday food; and everywhere you go you are greeted by the sound of holiday music. The anticipation of Santa and gifts makes many people giddy; hoping they were nice, and forgetting the times they were naughty.

On the flip side, the holidays are also filled with high expectations. The desire to provide the Hallmark Christmas experience can bring on feelings of sadness, loneliness, anxiety, and inadequacy. Has commercialism hijacked this special holiday? We go through both physical and emotional stress, working extra hard to buy the latest and greatest for our loved ones. For those of us with MS or any other chronic illness it is extremely important to be mindful of falling into this holiday trap, as we really cannot afford the effects of this kind of stress.

Many feel a void, missing that special ingredient that might make things right. Sometimes that is money, family, the desire for a partner, or food on the table. For me, that special ingredient is my mother. She died 5 years ago this year and every holiday since has been difficult for me. Though I do my best to get into the holiday spirit, I still get weepy when I think of her. I miss her baking, I miss her smile and her wonderful hugs, and I think of the hardships we went through growing up. It makes me sad to think of the stress I used to see her feeling during the holidays, feeling inadequate because she could not do more. I suppose many fall into that “keeping up with the Joneses” type of peer pressure. It’s hard not to feel that way when everywhere we look we are being sold a certain ideal wrapped in a shiny red bow of consumerism.

On the flip side I get happy when I think about the endless hours my mother spent in the kitchen, preparing delicious food for us to enjoy. We would watch cheesy holiday movies together; the Grinch and National Lampoons were our favorites! We would drive around and look at Christmas lights, and decorate the house together, preparing for Santa and other holiday visitors!

Since my loss I have worked hard to create new traditions, and I recommend you try this too if you are feeling blue this holiday season. It is important to acknowledge how you are feeling and then try your best to find that new secret ingredient! Maybe that is an annual board game night, or inviting friends over to help trim your tree. Either way when we work hard to find the positive we have more energy to remember good memories, and honour them by creating more.

For me Christmas at its core is about reflection and sharing. Reflecting on the past year I have been thinking about the challenges I faced. My relapse really changed my life for the last 8 months and though I struggled with it, it has also brought me joy. That may sound odd but what I mean is without that relapse I would not have gone for CCSVI, I would not have met so many wonderful people with MS that have educated and inspired me, and I would not have had the appreciation for life to the level I do know. After my mother died I understood how delicate life is and though I thought that touched me, these last 3 years of living with MS has really put the icing on that cake. I would not be involved with the WAMS Foundation or writing this blog post had I not gotten sick, another reason to be grateful for what this relapse has brought me. Not being able to walk and being fitted for a wheelchair, to walking down the aisle this summer at my wedding has been a whirlwind to say the least! So I am also thinking about that special day of my wedding and marrying my wonderful husband and all the great support I have had from so many people this year.

I also plan to share this holiday season by opening up my home to my friends and family. I love connecting with friends over tea or wine, and if there is a chance to play a board game, my husband and I are always delighted! I am also sharing right now, with you! Sharing my compassion and hope for you all, whatever you may be going through this holiday season, and wishing you all find something to bring you happiness. I encourage you to find pleasure in the simple things and savor the time you have with your loved ones. I know this can be a hard thing to do, but the more we try and easier it gets.

Remember no matter how hard things get you are never alone. I have lived that experience this year and am so grateful for the support that has come my way! I thank you for all the support you have offered both myself and the WAMS Foundation in 2011. Don’t forget to take care of yourself during the holiday, taking breaks and escaping the madness as much as you need.

I wish you all the best of the holidays this year, no matter what you celebrate, and hope health and happiness to you and your loved ones for 2012.

~michele

21

Tortoise or Hare?

Image Copyright to Alex Cockburn

 

Pacing myself is something I have never really had to think much about. As a busy-body type of gal, my curious mind has continuously kept me active; I often have my hands in several projects at once, in addition to having a full social life.

When I was diagnosed with MS 3 years ago I was told I would have to slow down my fast-paced lifestyle. Truthfully I didn’t really understand what they were asking of me, as I didn’t think I was going all that fast to begin with. I’m sure some of the people reading this can empathize all too well.

I tried to slow down as best I could, but “slow” to me is a relative term. I continued to work on several projects, volunteer, maintain a relationship and my social life. Doesn’t sound that slow, does it? While I got away with this for a while, my recent relapse has forced me to find a sort of equilibrium, a healthy balance that allows me to stay active and involved without overdoing it.

What I have learned in these past few months is that having balance and getting the most out of life are not mutually exclusive to one another. The key is to try and find new challenges, interests and hobbies that suit who you are at this moment in time. If there is opportunity to share your hobbies with your friends and family, even better!

When it comes to work, easing back into it is important. I thought I would go back to work full throttle, but after my first day back I realized that might not be the best thing to do. This is where having acceptance of who you are in the moment and being honest with yourself and others becomes very important. This does not mean you can’t work up to a full time work schedule again, it just means it’s ok to take it easy and draw boundaries for yourself. Let me tell you this is a very liberating feeling!

I have learned not to push myself too much and accept that spending time with friends might mean more nights in rather than out, but hey who said nights in can’t be fun?! Crafting with friends, hosting a potluck or having a movie night with wine and popcorn are great ways to spend time and create memories together.

Still, from time to time, I get the feeling that I’m not as fun as I used to be. I get this feeling mostly because I can’t be as spontaneous as I once was, and because my energy level has changed so dramatically. Feeling like that is never easy, but going to a concert, shopping, or contributing to a potluck are still well within my capabilities. I just have to plan well so that I have the energy to do them.

I would like to thank those of you who have been patient and supportive with the changes I am faced with. Thank you for making me feel that no matter what pace I am going at, you are still there and ready to have fun together; I cherish my friendships, and your understanding and support mean the world to me.

My new pace is a work in progress and it changes every day. I am not quite the hare I used to be, but I am also not the tortoise. I am somewhere comfortable in the middle and I work to accept this, and be grateful for it, every day.

8

New Connections

September 10th was the three month anniversary of my CCSVI treatment, and what better way to celebrate then to head over to Sidney on Vancouver Island to attend a conference put on by the National CCSVI Society: New Discoveries New Beginnings. The purpose of this event was to bring together people from across Canada and deliver the latest in CCSVI research.

Prior to the start of the main conference, various groups from across Canada that have been working on CCSVI related issues (fundraising, activism, research, awareness raising etc.) came together to meet for a roundtable discussion to share what we have been working on and collaborate on how we might be able to work together. Walk a Myelin Our Shoes foundation CEO Carmen Amundsen and I were both invited to the meeting to represent WAMS, which we did with great pride. My friend Michelle Walsh, who I have previously only spoken to via the internet, was also at the roundtable discussion. Finally getting to meet her was an emotional moment, and I felt like the conference was off to an amazing start!

While each group at the meeting varied widely in terms of the work they do, all of us share the common goal of  improving the lives of people living with MS, and supporting the CCSVI movement here in Canada. The meeting ended with the decision to form a collective; working together wherever possible, and providing each other with mutual support as we endeavor to help people in the MS community. I see wonderful things coming out of this new collective, and I am excited to be part of a group of Canadians who will be making a difference for the rest of our peers. It is wonderful to not only be part of this new team but also know that I have made new friendships within the group across the country; great for when you want to travel and have people to visit along the way! Red Wine in Alberta, a visit to a farm on day in Saskatchewan and shopping in Toronto awaits : )

Sandra Birrell, President of the National CCSVI Society, and her team did such a wonderful job and I commend them for their hard work, as I know how hard it is to put on large scale events and organize speakers, food, rent space etc. I’d like to give a standing ovation to everyone at the NCS!

The highlight to my day was meeting Dr. Kirsty Duncan.  I have long since admired her from afar, watching all of her speeches about CCSVI, reading about her efforts and cheering her on from the sidelines. When I introduced myself I was not prepared for how emotional the moment would be, I definitely shed a few tears as I said thank you to her for all the support she has given to those with MS. She asked me my name and my story, and as I told her she too began to cry, and hugged me with such warmth. She asked about how my strength had improved since the surgery, and she got even more excited when I showed her how I am now able to walk. She grabbed my hand and started to tell people that they needed to hear my story; that six months ago I went from being fitted for a wheelchair, to walking down the aisle in July! It made me blush to see someone who I look up to get so excited by me and my story.I guess as I have been living it I don’t get as excited by it as it has been more of a struggle then an excitement. It is true that more people should hear these positive stories, which is why I blog here. I made sure to introduce WAMS founder Carmen Amundsen and Member of the Board Jennie Defoy to Kirsty Duncan as well, as I had to introduce Kirsty to the wonderful WAMS Foundation team who helped me!

I ended up being interviewed for a documentary that was being made that night, thanks to Kirsty asking them to add me in. I’m not sure if I’ll make it into the documentary, but it will be a really big honor if I do. What was really touching was that at the end of her speech that night, Kirsty Duncan  mentioned me by saying she will always remember a girl she met  who was fitted for a wheelchair six months ago and in July walked down the aisle thanks to her CCSVI treatment. Our entire table was crying, and I was so flattered to know that she was speaking of me.

I hope you get to read this blog post Kirsty, as I would like to say thank you again for taking the time that day to talk with me, for getting excited about my story, and for sharing it with others during your speech. It meant so much to me, you are a true inspiration and I am so grateful for having met you!

Dr. Arata and Dr. Hewitt, the two doctors from Synergy Health Concepts where I had my CCSVI treatment, one of which did actual treatment (Dr. Arata) and the other was the one who did my intake and post treatment visit (Dr. Hewitt) were also there. Dr. Arata seemed quite moved by the fact that I managed to get well enough to walk down the aisle at our wedding, without assistance, as he remembers how progressed my MS was when I came into treatment. Oh and I won the Dr. Bill Code’s books in the silent auction that I have been wanting for a while so that is the next up on my to do list is read them! I got to meet him the next day, and have him sign them for me, yes I am a nerd like that : )

I am happy that I went to this conference. I left feeling full of energy, ready to get even more active in the MS community and in the CCSVI movement. Not to mention it was a beautiful weekend and the ferry ride both there and back was lovely, and we had the chance to enjoy fresh Island air that I often miss, being an Island girl myself.

I encourage everyone to try and get out to any type of conference, workshop, gathering, rally etc. related to CCSVI if you can. It’s a great way to learn about MS and meet other members of the MS community. Even if you have not had the CCSVI treatment, or if it is not something that you are considering at this time, I would still recommend you go and check these opportunities out.
The things you learn, and the connections you make, will never fail to surprise you.
Happy Fall everyone!

 

 

 

 

 

 

10

A Victorious Wedding!

Hi Everyone,

I really did not mean for it to be this long before I made my next blog entry, but as many of you know I had this event that came up not long after my treatment – my wedding! So I had 3 weeks to rest post-CCSVI and then it was up and at ’em to get this wedding ready to go.

Now before I tell you all about the fun I had at the wedding as I did have fun, this is where I insert the WARNING (said in that typical TV over voice!) to all brides and the husbands to be, we all know weddings are alot of work, but when you are dealing with A.recovery from a treatment that was quite emotional and or B.are living with a chronic illness that effects your brain and capacity to ‘run around’ to get things done (gotta love that fog when it rolls in), weddings or any large scale events are just that much more challenging. So make sure you have support! I am someone who plans and runs events at work all the time, but in this case my event super hero cape really did not work as well as I wanted to and although I did really struggle but gearing up to the final touches I had family, friends and bridesmaids to the rescue!

So there was all the usual wedding events, a lovely Bridal shower, which came 3 weeks right after my treatment which was perfect timing as the theme was Eco-Chic Relaxation. It was a sunny day and my lovely Maid of Honour set the mood right with yoga mats and Thai prayer flags as well as told everyone to bring only gluten free goodies! Let me tell you my dear MS friends going gluten free is something you should read about and consider. I really liked this article on it: http://glutenfreerecipebox.com/multiple-sclerosis-celiac-disease I thought it would be hard to do and it really has not been, and I am proud to say since my treatment June 10th I have been gluten free! My friends brought so many great new gluten free treats, both savory and sweet including homemade brownies that had everyone saying “oh my are these really gluten free!”  The day was relaxing and I had the chance to tell everyone at once how my treatment went, which was really nice for me as everyone had been calling, texting and emailing for details but I was often tired to tell the story over and over again so this was a great one one stop shop opportunity. I of course did my CCSVI pitch of encouraging people to continue to support any CCSVI initiatives that they see to help speed up the process for Canadians being able to be treated here in our home country.

I was spoiled with gifts, and this one is a must for those of us who struggle with sore hands: V Slicer. I swear it will change your onion cutting life! I am all about trying to make my kitchen life easier as I love cooking and when my relapse was really bad the kitchen was not my friend and that really upset me. I know cooking takes time and effort but it is also important that we keep ourselves well nourished; so these little gadgets  that really help are worth the counter space and investment.

So next stop wedding prep. This was a challenge to say the least, but I won’t bore you with details. All I have to say about this is, if you like to DIY stuff like me and be crafty and give things that hand made personal touch, save money and are worried about not creating to much waste (or even just some of the above) it can be done, just make sure to spend some time on Google before heading out to the craft store, and once you are ready to get down to business, bring in the crafting troops! With the CCSVI only being done June 10th I was healing, and my walking was getting better, my fatigue was getting better, but all the pains and challenges I had before treatment were still part of my life after treatment, and support was something I still needed, and I needed to let people know that. So if you are going for CCSVI or any kind of treatment make sure you are not afraid to still ask for help post treatment as the healing process takes a while.

So onto the fun stuff! The Stagette night was the time of my life! I had friends from Japan, England, San Francisco, Alberta and of course Vancouver all here ready to party! We started with a Thai dinner and my friend who organized also set it up to be gluten free! If you call ahead and ask a restaurant and let them know your dietary concerns then they are usually very helpful (I also planned for my wedding food to be all gluten free and the hotel arranged this at no extra charge), and the food was divine! My friends decorated me in bubble-wrap couture and a hot pink boa for the night which was super glam. My friends could not get over how healthy and happy I looked as many of them had been visiting me over the past few months, seeing me in my pj’s limping along, sometimes in my wheelchair, then walker and then using the walls as support and often with tears in my eyes; but this night I was wearing a pretty dress, had make-up on and on my feet without support and in heels! Yipppeee!!!!

After dinner we headed to Raw Canvas , a place that allows you to paint and drink wine!  14 girls, wine and 3 canvases and well what do you get… a big colourful, abstract mess, full of life and energy and great memories! Being creative is a great way to pass time when you are not feeling the best, but I know it can be a challenge to pull out all the art supplies and set up a space to paint or do arts and crafts, although I did try while being at home these past few months, and I recommend it to anyone who is stuck at home ‘sick’. Even if you are just making a mess with colour it can be fun! Let me tell you this night was so much fun! If there is ever a Groupon that comes up for this place I recommend you grab a friend treat yourselves! After a painterly fun time the last few standing, and can you believe I was one of them, went DANCING!!! Yes me in heels and my pink feather boa headed to the Tiki Lounge at the Waldorf for some old fashioned Rock and Roll dancing! I am not sure if it was the pure adrenaline of it all or the hours of being on the couch that I was now making up for but I was a dancing machine! Every now and then a friend would hug me or cheer in excitement “Look how awesome you’re moving! I can’t believe it!” and then I would think “oh ya!!! I am DANCING!!! This is AWESOME!!!”

I believe we feed off each others energy and being around my friends who were so excited for me was my fuel that night. I am now thinking to myself were they excited because I was getting married or because they were seeing me looking so healthy or a combo of the two… I vote a combo of the two. Either way the night was a blast and the best medicine I have had in a long time. In writing this blog post I am thinking it is sad that we have to wait for something like a wedding to come up for friends to gather and have such a fun time like that. It would be nice if we celebrated life in general like that more often. It was a scary awakening when I woke up and couldn’t move my legs; the last few months I have spent alot of time thinking about life, and how quickly things pass by, and how busy we all are and how little time we make for the important things such as sharing laughter with one another and fun silly nights out like the stagette really are invigorating to ones spirit. Stagettes are special so I am not suggesting to throw them for no reason, but here’s a thought: if you have a friend who falls ill and is starting to feel better, maybe think about throwing them a party for pulling through their rough time. Perhaps a victory party!!!  Or maybe the party could be thrown at their home while they are ill (ask first if they would be up for something like that) and could be done like a pyjama party with ice cream, movies, popcorn and wine of course!  Anyhow I am getting off track here but you get my point, celebrate each other and life as it is today, find time to have fun, dance, laugh, sing (I love karaoke!) as you never know what tomorrow might bring .

So Wedding day came and I was nervous as can be! My maid of honour and life long friend Kirsten Sorensen was here with me and we packed up the car and headed to the hotel to get ready while my other friends arrived here to make cupcakes! Our wedding was as handcrafted as can be, made with all kinds of love! Once arriving to the hotel I was fine and was starting to get excited, but I still had my vows to write! I kinda left those till last minute, but don’t alot of people? I must say quickly that although my darling maid of honour felt like she could have done more (as she does not live in Vancouver and was struggling with the distance) I could not have gotten through all this without her! I love you Kirsten!

It came time to walk down the aisle and although I was so tired for previous days activities, and lack of sleep but I still managed to get all glammed up, slip on my heels (heels again!) and put on what felt like a million pound dress, and took several deep breaths and started my way towards the ‘runway’. My feet were feeling extremely painful and numb that day though, and it just goes to show people how quickly stress effects our body! I had been feeling ok but when I was about to take that walk I felt like my uncle literally had to hold me up. Prior to the wedding things had been very tough with me getting sick, and there were points where we were not sure that we should be having a wedding. We never doubted our love but the stress of a wedding seemed like too much; now at the finish line I was overwhelmed with it all, with all the emotion that came before this point, all that was about to happen and the emotion about the future.

Once I felt the sun on my face, saw Don at the front waiting for me with our lovely bridal party and saw some of our friends and the beautiful flowers my aunt Tania had put together for the day, as well as seeing my dog (who was waiting at the front for me as she was the ring bearer!) I felt at ease and full of joy and filled with a feeling of victory! Here I was WALKING finally DOWN THE AISLE!!! It was such a sense of accomplishment, that we made it through all this current relapse stuff, both on a MS sense on a personal sense, as I am sure those of you with MS or a chronic illness can relate it is not easy on your personal and intimate life. Don was beaming his vows we lovely.

After the ceremony it was picture time which was alot of fun! Our photographer Sandy Eutis was amazing! It was then back to the hotel for the reception dinner, speeches and more dancing! All the speeches were wonderful of course. Mine was last, and I had some notes that I scratched down an hour before but I started off with this quote:

“No matter how strong one individual is, we have to live as a human community”.

-Dalai Lama

I read that because I wanted to say thank you to everyone sitting before us, thank you for their support and being our community through all we have been through in the last few months. I spoke about feeling victorious and how when we have love in our hearts and our eye’s on a prize we can make any thing happen. Thank you to all those reading this blog post as well and again thank you to those that contributed to me going for my CCSVI treatment, either through helping at my fundraiser or donating towards sending me for the treatment. Whose to say I would have walked down the aisle without your support.

MS is something I still learning to live with, even post CCSVI, though I feel better, I don’t feel 100%, nor do I expect to. The only thing I can do is keep my hope alive, keep my eyes on prizes and go after them, while pacing myself, keeping my support systems in place and continuing to try and have fun along the way. Which is why I share my stories with you all.

The rest of the evening was wonderful! My bridesmaid Shayna did a beautiful tribute to my mother who passed away 5 years ago this summer to breast cancer at the young age of 49, and we handed out origami cranes of hope made by Shayna to all our guests as a reminder to all to keep hope in their hearts always. We couldn’t have asked for a better wedding, full of love and great company and amazing cupcakes made by my dear friend Hilary. Our MC Rob was the best ever and I had the chance to dance with my brother, see family I haven’t seen in ages and of course dance with my new husband!  So there seems to be a theme reoccurring throughout this blog post today: dance dance dance! But I slipped out of my heels and into my silver Birkenstocks!

Keep on Dancing,

~michele

 

 

30

One Month since Michele’s CCSVI treatment… and how it all went…and the walker?

Hi Everyone,

Today marks 4 weeks since I had my treatment, and I am starting to finally feel better; as I had quite a bit of post treatment soreness in my neck, as well as being quite exhausted from the whole experience. Some of our friends had been saying they had hoped it would be like a vacation for my fiance and I as things have been very hard for us with all that has been going on, but I won’t lie it was go go go when we were there.  We met some amazing people and had an amazing time though so let me tell you all about it! Oh and there is a wonderful punch line that you have all been waiting for, so keep on reading: )

I would also like to take this opportunity to thank PHILIP for the donation of the Airmiles to getting us there! I am not sure if we have properly thanked you, or even if we have if we have thanked you enough! This was so kind and we are so grateful! I must also tell all of  you out there that are wanting to travel for your CCSVI treatment, getting your flights donated is a great way others can help out – don’t be afraid to ask or suggest this : ) Airmiles can also help with the payment of hotels as well : ) Ok so back to my story…

As soon as I dropped my bags in our room at the Ayres Hotel our room phone rang, “MICHELE IS THAT YOU?!” I was confused as to who might be calling me, and who knew that I had just arrived minutes ago. It was Mary, a friend I had been chatting with on a Facebook group for people who come for treatment down here. She was calling to see if I was here yet and to let me know a group of people were meeting in the lobby for ‘cookie time’ (every day at 5 the hotel puts out cookies and often people with MS from our group online meet in the lobby on the nice comfy couches to gather and chat). I unpacked and made my way down with my Aunt and Fiance for cookie time and was greeted by a group of other people with MS. Some of which had already had the treatment either that day, a few days before, or were about to undergo treatment. It was a very powerful, emotional, and wonderful way to spend my first few hours in Newport Beach. All of people I was talking to were: A. from Canada, B. Women of various ages varied walks of life and C. full of amazing stories related to their experiences with MS. I shared mine along with them, as my Fiance and Aunt listened and took it all in; for them it was quite an emotional learning experience, and it was also quite moving for them to see me interacting with others that were going through the same motions as me. For the first time in some time I really felt like I was surrounded by a true peer group, and it felt great!

The next morning it was MRV time. I have had many an MRI since having MS, and they don’t bother me at all.  But once I was all wrapped up and pushed into the sardine can that is the MRV machine and it was turned on I was not loving it one bit! I think it was because this was the first time I had it with music on. I don’t know about you but with music and the already loud noises these machines make it was way to much noise! I was trying to do all my yogic breathing techniques and trying to push the button to let the guy know “HEY GUY, HELLO GUY… THE MUSIC… IT HAS GOT TO GO!” But I don’t think he was picking up what I was putting down… so I kept breathing through it and finally the 90mins passed and I was free to go!

I was impressed by how fast everything moves over there as I had my MRV at 10am and by 4pm I was over to see Dr. Hewitt for my Pre-Op visit, to see if I indeed did qualify for having the treatment for CCSVI.

So did I qualify for CCSVI… we were dying to know. YES indeed I did! I had blockages in both my Left and Right Juglars but luckily my Azygos vein, which can often be a big problem for many, was looking pretty good from what Dr. Hewitt could see on the MRV.  He even said I could be modelling Azygos Veins! Which we found quite funny. But all jokes aside, he said it looked great, but often they cannot tell 100% from the MRV and that they would make the judgement on what they would do once they were in there. He thoroughly explained what they were going to do, and by thoroughly I mean point by point, and were we ever impressed by how diligent he was. And so we booked a time for the morning and were off on our way, excited to know that indeed I was a candidate for the procedure, and yet nervous all at the same time.

The next morning came, but not soon enough. As my anticipation for the treatment grew so did my nerves, as I am petrified of needles! Beyond the needles though, having this major relapse, coming to California, meeting all these amazing people with MS (both now here in person and networking online) it seems for the first time in the last 2.5 years of having MS, my life has been fully consumed by my illness; and it has hit me like a brick truck! Only 3 months ago I was in a wheel chair, I could not walk due to pain that was so intolerable, I was barely sleeping, I have had to deal with so many doctors and workers of various types coming into our home, cooking that I so love to do has become nothing more but an anxiety causing act,my hands feel like cramped up crab claws, my job that I love is something that I have had to to put to one side, I cannot think straight, reading has become such a challenge that I have come to feel like I have dyslexia, I cannot enjoy my friendships the way I used to and feel many of them are slipping away at rates I cannot even manage to grab ahold of. I can’t even walk my dog that I love so much. I have made progress and have moved onto walking with a walker, but my strength and my endurance is limited, and I am not letting you know this to complain, but more so to paint a picture of where I am coming from, and why the nerves were so high. So much at risk, so much emotion, so much fear of what has been happening and what MS has been all about for me in such a compact amount of time, and meeting more and more people with it and learning about it has been empowering, but also paints a picture of the reality of what this illness really is and how it can manifest. I am a very positive person, and I work hard at keeping positive. At trying to remember what I do have rather than focusing on what I don’t have and cherishing the wonderful things that have come my way. Like meeting the wonderful women here at the WAMS Foundation. So don’t get me wrong when I point out my woes, just bear with me when I try and draw out why I was full of anxiety and nervousness going into this surgery.

Early on the morning of the June 10th my Fiance Don went to go pick up Carmen and Jennie of the WAMS Foundation, as they had arrived and were staying near to Disneyland; coming in to celebrate Jennie’s birthday and see me off to my treatment. It was so wonderful of them to come and see me, and that was a real treat and nice distraction for the morning. Once they all arrived back at our hotel and we were all having breakfast we got a phone call from Synergy’s clinic letting us know that they were running early and we could come in an our earlier! Can you believe it! Medical clinics are generally running late! This was a pleasant surprise so we all packed in our rental car and drove off, excited.

My support team waited in the 5 star lobby while Don and I went in the pre-op to get ready. We had our hugs and a few tears were shed but I knew in my heart I would come out above it all. I must say that I was trying to keep my expectations of the procedure realistic; I did not expect to have it done and run a marathon, or even throw my walker away the next day. I did not expect to regain full use of my mind or my hands, or have full energy allowing me to party like it was 1999 again! lol

I just had hope. Hope that this procedure would allow me to regain some of what I was losing, and hopefully slow down some of the progression this disease is causing in my body.

The surgery was around 45 mins and they treated me amazingly well. Although I was made to feel very comfortable, I still felt pain when they did the ballooning and the cutting of my valves, but it was over quickly and soon I was in the resting area.

While I was sleep off all the ‘comfortable making magic’ they gave me, Dr. Arata came out and spoke with Carmen, Jennie, Don and my Aunty and explained what he had done. We captured this on video, and in fact I have a bunch of video I plan to put together for my next blog post.

As Dr. Hewitt already explained my right jugular had a blockage, and was treated. My Azygos Vein, although said I could model them by Dr. Hewitt, did seem to have a tiny little imperfection and so just to be on the safe side and since they were in there, they decided to open that up as well. The left side is where it got a little more tricky. My left valve, well both valves in fact; are small. With my left one being quite tiny that they needed to tear it open using a cutting balloon in order to open it up more to allow the blood to have better flow (Learn about cutting balloons on their website: http://www.synergyhealthconcepts.com/cutting-balloon/). When using a cutting balloon they have to be careful as not to tear to much, but to tear enough to get the effect they are hoping for. It’s quite an art, as the whole practice is, and I know now that is why I had so much post-op soreness. My valve was torn, as well as my veins were ballooned opened so needless to say my neck region has been very sore. With both the left and right sides of my jugulars and my valves to those veins they got the desired results and I now have optimal blood flow there! Can I get a hip hip hooray!

In the post op-consultation we had with Dr. Hewitt on the following Monday, he was very honest with us. Letting us know that the left valve will have to be watched, and that it will be very important for me to take it extra slow and easy (if you know me that is a big challenge!); and that the chances of that side re-stenosing is higher than someone with a larger sized valve.

The challenges I now face are: A. getting follow up care in Canada; I have gone to my GP who I LOVE and am so lucky that he has been so supportive and helpful. Unfortunately there is no hard and fast way for us here to get an MRV under our health care system or a doppler without going private, so that bridge is yet to be crossed. Dr. Hewitt has asked that I have a doppler every 3 months, if possible, so that we watch what is going on closely. As with a torn valve another thing we need to watch for is scar tissue building up or the blood flow becoming constricted again and we must be diligent in responding to what may occur.  If I re-stenosis, and in being honest to myself  I know will more than likely happen eventually (and I am not trying to be a Debbie Downer here, just a realist). We still have a ways to go before we can be treated here in Canada. I love the Synergy team and know they are amazing, but I dream of the day we Canadians can be treated here in our home.

And lastly the challenge but fun part that I have control over; lifestyle changes. Less stress, change in diet, and increase in exercise – the typical things we all know we should be striving to do; but now I know I MUST commit to. I have changed over to a gluten free diet and in week 4 have not cheated once! I love cooking and now that it feels like my brain fog is lifting more and more everyday, I am excited to learn new ways of eating. So this is not to hard for me. The exercise part is a challenge as my body is weak and my motivation is a struggle because I still have alot of pain in my body. I am excited that I have been accepted into the GF Strong Rehab centre and will start there sometime soon. I know that the wait list is long, but at least I know I am on it so that makes me happy. Lastly stress… oh that word we all know so closely. It is always something we as humans are working on to get rid of, and I too am in that dance with stress. I think taking this time off work will really help, and evaluating what work and life needs to look like for me when I am ready to go back is what this time for me is about right now.

So I know you are all dying to know the results! Maybe you just even skipped to this bit! I felt it was important to write about the experience for those that may have MS and are thinking to go for treatment to learn from this post; and of course please leave any questions and I will answer them. So Drum Roll Please……

I AM NO LONGER USING MY WALKER!!!!!!!!!!!!!!!!!!! HIP HIP HOORAY!!!!!!!!!!!!!!!!!!!!!

I must paint a realistic picture for you as even though I am no longer using my walker, that does not mean I am no longer experiencing living with MS, so please read on. First few days after treatment I felt terrible and was super weak. Dr. Hewitt even noticed in my post-op that I was not doing so well. Surgery takes alot out of some people and I think pre-surgery we had the fundraiser, and the last 3 months had been so intense for me that this really wiped me out. So right after treatment I was not instantly feeling anything, like some have reported. I still have the pain in my feet and the numbness and tingling was there for a week at the same rate as before surgery, but a few days after surgery I was already walking, slooooowly without my walker (holding onto Don, or always near a wall for comfort sake) In fact the day after I took a stroll on the beach with my new friend Jeni who also had the procedure under the sun! Over the last 4 weeks small improvements have started to happen, and although they may not seem huge to you, to me they are spectacular!

  • I read a full chapter in a book! and now I am on chapter 8!!! I could barely read a page for the last 6 months. Can I get a hip hip hooray for reading again!
  • I cooked a meal off the cuff and it was super culinary! I love cooking and the kitchen has not been my friend beyond cheese on toast. Well I made polenta, with pesto marinated veggies. grilled them up and served over the polenta with some fresh parm and green salad with lettuce I grew from my balcony garden! (since being ‘sick’ I started a balcony garden as a way to keep relaxed and have some focus and get some fresh air. I recommend it!). Can I get high five for cooking good food again! Don is sure happy about that ; )
  • I drove my car!!! I haven’t been driving because I could not feel my feet and my brain fog is so bad. Well both have gone! YAY for being safe to drive again which equals a sense of independence back!!!
  • I went shopping all by myself at Oakridge for some bits and bobs for our wedding the other day; after having gone first to the Dr. and then to tea with a friend. So multi-tasking, driving and doing it all alone! It was maybe a bit to much in one day but I DID IT! No walker, no help and I am so excited to report it just keeps getting better!
  • And the best part for me, I can walk my dog again, on my own with out the walker getting in the way!

I do still have low energy and by 4 I am usually ready to call it a day. So I am looking forward to the fatigue lifting. My pain is still looming quite a bit but I am pushing through it as I think it is part of my MS that I am going to have to accept and work with. The walking is by no means perfect or easy, but it’s better and I am celebrating that everyday I take steps!

So all in all CCSVI was WORTH EVERY PENNY and EVERY EFFORT it took us to get those pennies and get us there. If you or a loved one are thinking to do it, then I say what do you have to loose? We know it is costly, but there are ways to raise funds and find help, and honestly don’t be afraid to ask for help or to accept it with open arms when it comes to you. People take enjoyment out of helping their loved ones who are suffering, it allows them to feel like they are also making a difference, so by letting others helping you is also offering them a chance to be part of the change they wish to see in the world.

I have said it before and I will say it again; but I am very excited to be part of the WAMS Foundation Team now as their blogger. Of course not all posts will be this long, but I have already started to dig up great resources to share with everyone on how we can continue to learn and grow and nourish our bodies and minds. Because after having CCSVI comes the hard work. The work we commit to doing for ourselves and how we connect as a community of people living with MS, caring for people with MS; friends of, family members of and colleagues of those with MS. To learn more about and support each and everyone one of us touched by this illness.

Have a wonderful weekend everyone, and thank you for reading my blog post today!

~michele

 

ps: just realised I forgot to say a big thank you to my Aunt and Don for coming along with me to California and offering their support and nursing me through this time, and to Carmen and Jennie for visiting me the morning of my treatment! Thank you all! Don and Tia Salete I love you both so very much! xo

And thank you to all the lovely people I met on my trip, the friendships we started are ones I am sure are going to be long lasting.

 

 

 

21

Michele’s Blogging for WAMS Foundation !

 

Hi Everyone,

I am really excited to have been invited to be the blogger for the WAMS Foundation! I will be blogging about my treatment and my continued journey with MS, as well as sharing other information and interesting findings about MS and ways of healing that might help others.

For those of you that don’t know me, I am Michele Mateus, the first recipient that was chosen to be helped by the WAMS Foundation, you can read more about my story here https://wamsfoundation.comfirst-recipient-of-aid-from-wams-foundation/.

I would also like to personally thank everyone again for their support on raising the funds needed to help send me to get my CCSVI treatment! We raised a total of $17,000 at the fundraiser on May 13th, 2011, and a week today I will be having my CCSVI treatment! I will make sure to post a blog entry after I have my treatment to let you all know how it went : ) It is a dream come true that I am even getting to do this surgery, so thank you to all that contributed to making this happen for me, all the wonderful volunteers on the night of the event, the the WAMS Foundation team, my friends and family and colleagues and fiance, the sponsors and donors of silent auction items, and thank you to those that could not make it to the event but did make donations through the website.

I hope that through reading these blog posts you will learn and be inspired by what I share with you; if there are topics you would like to know more about please let us know as there may be a possibility that I could research them and perhaps use them as my next blog topic.

So watch this space for my blog posts, and don’t forget to follow along on Facebook and Twitter as well.

Best of Happiness and Health,

~michele

Jennie, Carmen, Michele and Melanie share a group hug at the end of the WAMS Foundation fundraiser in celebration of a successful night!