I Got Something To Say

Listen up, I got a question here?
Would anybody miss you if you disappeared?
Well your life is the song that you sing,
And the whole wide world is listening!
Well the answer to the question is,
You were created, your life is a gift and
The lights are shining on you today- You got something to say!

~Matthew West, Something to Say

I’ve been SO so tired this past week… sorry I haven’t posted much. Hiking in Jasper was awesome believe me…

Multiple Sclerosis.jpg

Maligne Canyon, Jasper AB

Maligne Canyon, Jasper AB.jpg

Maligne Canyon, Jasper AB

Multiple Sclerosis.jpg

Maligne Canyon, Jasper AB

Maligne Canyon, Jasper AB.jpg

Maligne Canyon, Jasper AB

 

Maligne Canyon, Jasper AB.jpg

Maligne Canyon, Jasper AB

 

 photo IMG_2153.jpg

Post hike face-just sunscreen and no blush-that redness is evidence of the hike haha!

But man, it kicked my chubby BUTT. Well, maybe not so much my chubby butt, because I’m pretty fit for a fat girl, thank you very much  😛  …But my MS legs dudes…they are my NEMESIS. I HATE THEM. They get tired really easily when I overdo it. I’ve been recovering from the Maligne Canyon Hike since I got back and today is the first day I feel half ok again. HALF mind you…yet I made my ass go to Zumba this AM because I was tired of being TIRED. It’s just a NO LIKEY for Tracy.

I sometimes forget I have Multiple Sclerosis?!!! Yeah I know that’s weird…but it’s true. Most days I am fine. FINE. And then I try to do things like that hike and my body says HELLOOO mother-effer…forGOT you have a disease HEYYyyyy? 

It’s been 15 Years since I was diagnosed with Multiple Sclerosis. FIFTEEN YEARS YOU GUYS. My actual diagnosis day was September 15, 2000. And back then it was a probable diagnosis…you had to have another relapse to PROVE you had the disease to get on the expensive meds that were available then. And well, you all know how I HATE to disappoint hahaha… :P…and so in October I had another Multiple Sclerosis attack..which changed my diagnosis to DEFINITE Multiple Sclerosis and I was OK’d to go on a medicine of my choice. Yeah, you get to CHOOSE when the medicine costs a lot of money. It’s like they fight for your insurance money-kind of hilarious to be honest. November 1, 2000 a nurse came over to my house to teach me how to inject myself every day with the medicine I chose to take -for the rest of my life.

FIFTEEN YEARS AGO…..WOW.

I truly forgot about how long I’ve been dealing with Multiple Sclerosis, until the Nurse that comes along with my expensive meds checked in on me a couple of weeks ago, and reminded me of that little tidbit. Yeah, when you pay $1800/month for meds you get a personal nurse that emails you and asks you if you need anything…go figure, hey?  😛

And you know what? It was a good thing she emailed me and reminded me of my anniversary. Because I’m truly a lucky ducky compared to a lot of others with MS. #NoCaneYet #15YearsStrong   She called me an inspiration? And wanted to know what kept me going strong, taking my meds all these years?!

And, I had to think about that to be honest. It wasn’t an easy answer for me actually, because I don’t take my meds regularly-which is supposed to be every day-anymore. Hey, 15 years of needles…HURTS….I’m sorry…I just can’t every day lately..but I try 5/7, well maybe more like 4/7 …3/7 ???!! days to prick myself and grin and bear it. It’s a sub-cutaneous injection and I don’t use my arms anymore…haven’t for about 7 years now. When you cry because of the pain your meds cause, you tend to SKIP that hurty part…no more arms dudes. I also happen to have the curse of lipoatrophy-a rare side effect from the meds and needles. It means just what you think it means-the subQ layers of fat get attacked and eaten away…which would be ok if it was nice and even of a fat attack. It’d be like free liposuctions HAHAHA! Instead, I’m left with holes and dents in my thighs and abdomen. It’s not pretty, that’s for sure. So when people complain about stretch marks and crap? I’m sorry, you have NO. IDEA. I don’t wear shorts anymore. I can’t…I have HUGE dents in my thighs that look…well, scary.  🙁

But, I don’t care? Because those dents in my body are what partly keeps me walking. It’s worth the defect! #fairtrade

And so? I think I need to TALK about it. Talk about Multiple Sclerosis. About my disease. And my mindset. Because honestly? I think that has had a BIG part in how I’ve managed my disease.

When I was diagnosed with MS, I didn’t see it as a SENTENCE as to what my life was going to become. My neurologist, bless her, was quite matter of the fact when telling me what MIGHT happen…like waking up one morning not being able to see..or walk. HA. Being blind one AM in my future was slightly disconcerting though, I’m not gonna lie. But, she also said she had patients well into their 70s that were still walking and doing fine?

AND RIGHT THERE AND THEN I DECIDED THAT WAS GONNA BE ME TOO.

As soon as I was diagnosed, I went to a Support Group held by the Multiple Sclerosis Society of Canada to learn about the monster, because dang it-I hate surprises. I wanted to KNOW. EVERYTHING. What could and couldn’t happen to me. And it was weird? Because most of the others there had been diagnosed 5-10 years ago and FINALLY decided to learn something about MS. They all told me how they admired me for going so soon…it was a month after finding out for me…and hitting Multiple Sclerosis head on. Most of them ignored it at first, until it was too late for them.

I don’t follow any “diet” for MS…I mean c’mon seriously…how can what I eat contribute to the demylenation of my myelin sheath?

Like screw off…don’t come on here and tell me how your 5th aunt removed beat MS by eating turnips every day. I’ll find you and kick you in the nards I SWEAR. It’s BULL. SHITE.

What’s done it for me? A few things I think, and exercise is one. Even though I’m not as slim as I was pre-diagnosis, I believe it helps me a lot. Why? It helps with STRESS. And I swear, stress is a HUGE and major problem not just for Multiple Sclerosis, but also for other diseases as well. I remember my neurologist telling me that keeping stress levels low was beneficial to my disease progression, and I took that to heart. I really did. And exercise helps keep me calm. I can’t do anything too strenuous these days, but even just a nice walk is enough to make me feel so much better and helps me destress.

Also, I don’t wear my disease on my shoulder…I don’t play the Multiple Sclerosis Card every chance I get. Believe me, it’s tempting some days. But like I said, I don’t think of myself as being sick, so it just doesn’t come to mind most days unless I’m feeling extra exhausted. And even then, I don’t use my disease as an excuse? EVER.

I BUCK UP…like my Zumba BFF Annette says I do. Yup. BUCK. UP.

I could sit around and feel sorry for myself and believe me, this week I did, LORDY. And this morning in bed when the alarm went off, I really did not want to get up to go to Zumba. But, I did. Because why NOT. I had no reason to not go. Yeah, legs were still felling tired, but so what. I know they’ll never feel all PERFECT. So, what else was my excuse to not go? I couldn’t think of anything else. So, I bucked up, got up, and went. And it was FUN. And I feel better for going.

And the last thing that helps me deal… is LAUGHING. Finding the funny in my day. I’m a weird bird! You all know it, don’t you? 😉  Marky knows it and has told me so-nothing like your kid calling you WEIRD hahaha! She’s been with me in the car when I drive and road rage sets in…and then…I’ll say something like F$$K BUS..yeah, I’ve said that…like a noun…and when I do??!! I LAUGH SO HARD AT MYSELF, and so does everyone else around me. Laughing is another way to deal with stress. And I love laughing. A lot!

I wish I could say there was some magic pill, some magic turnip(not sure why I’m on about turnips in this post, I do love eating them haha) that has helped me stay well all these 15 years of living with MS. But, I can’t tell you that’s the case.

What I do know? Is that it’s all about how your mind sees your cross in life. We all have our crosses. And not one is worth more than another’s? I mean what’s hard for you, is hard for YOU. BUT, it’s how you deal with setbacks…that’s the key. You can either melt into a puddle and give up…or, BUCK. UP.

It’s your choice. And, if I can do it? You can too. Here’s to another 15 years of walking without a cane! ‘Cause oh YEAH, that’s what I’mma gonna do. You can count on it.   😀 ‘Cause I got SOMETHING TO SAY. 😀 😀

 

HUGZ,

  • MissAmelieMarie

    Tracy: I’ve followed you for some time, but this is the first time I’ve felt compelled to comment. Whoa, you blew me away. What am inspiration you are. And a kick in my pants. Tomorrow morning I won’t whine about having to get up early to go do cardio (I’ve got a lot of weight to lose); instead, I will Buck. Up. Buck. Up. BUCK. UP. That poem jarred me, too. Unsettling. I was all sleepy & ready to hit they hay, now my mind and soul are whirling. Yowsa. Have a wonderful week, thanks again. Best Wishes, Sam’s Momma.

    • Aww, thanks! Honestly hearing that I’m an inspiration is SO WEIRD hahaha. I just do ME. That’s all. I have a lot of weight to lose too! But, I try not to focus so much on the numbers, but instead on how I feel. And yeah. I wish I was a size 10…but eh, maybe it’s not meant to be I think-at least for me. My BP is good, so are my sugars…I’m fit and fat. And can still WALK. And DANCE. That is important to me!
      I’m so glad I motivated you! All the best! And I hope you can sleep now haha-I hate to be the one that’s kept you up on a Sunday night! xx

  • MissAmelieMarie

    Thanks for responding! You sleep well, too! And I LUV your hair. It rocks. 🙂 Bye!

    • Always!! And hahaha-thanks! You can do it dude! You GO!
      Don’t let the bed bugs bite! 😉

  • This was really awesome to read Tracy and your attitude is really motivating. Thanks for sharing this with all of us. You are so right…everyone has their thing in life that is hard for them but it is how you deal with it that counts. Super wise words as we go into Monday. 🙂 xo

  • What an amazing environment for hiking! <3

    So 15 years of MS huh? I didn't know that. And I had no idea the meds could cause such nasty side effects, ugh! I'm glad to hear exercise helps a bit though, not just physically but also mentally. And I love your 'f*ck you, MS, I'm stronger than you' attitude. You're not letting it bring you down or stop you from being happy and enjoying life and that is awesome.

  • Lily

    Our personal experiences definitely shape who we are. Each of us go through different things, and it’s part of life. Your positive attitude is definitely inspiring, Tracy! You kick ass 🙂

  • You just rock Tracy! Kick ass attitude or what? I hope, well I’m sure, that someone with a similar illness will read this and feel massively inspired by how you are approaching life, illness or not. When I was ill, I chose not to talk about it and just get on with it, totally agree with you, laughter is the best medicine!

    • Hahaha I’m a NINJA haha! I hope so! But it’s hard-MS is so different for each person. Like I said, I’m lucky.
      Laughing IS the best thing ever! It’s medicine!

  • I think that regardless of our circumstances, we can choose our attitude towards all the challenges we meet in life. We can choose to treat them as nuisances, dragging our feet, or we can choose to fight for our happiness. In the face of an illness, it’s definitely so much harder to have your kick-ass attitude, Tracy, and I applaud you for it. I personally know someone who suffers from something a lot less serious than you, but chooses to be a whiny drama queen. As much as I feel sorry for her, I can’t stand the negativity.

    • Yup, it’s true. I know people who like to be the ‘sickest person in the room” and it’s fucking annoying. Gimme a break-it’s not a bloody competition.
      Thanks for that Monika! I so agree it’s attitude!

  • France Savard

    Dear Tracy, Keep on enjoying life like you do and keep that disease away! Keep that spirit xoxo

  • Tracy. 15 years is amazing! And to still be at a point where you can sometimes forget, just for a little while, that you even have MS — I mean it. That’s amazing.

    I am so thankful that you’ve been able to stay so functional and positive despite your MS, because it means that I got to meet you! And you know what? Being able to call you my friend makes my life a little brighter every day. You kick some serious butt, and it is AWESOME even just to stand in your sun.

    Here’s to 15 more strong, difficult, wonderful, awful years. I hope we still know each other by then!

    • Aww, Rae, you made me tear up! I’m so happy I finally got to hug you and so glad I can call you friend as well! You are amazing-remember that! You have been fighting yourself too, and look at you! You are intelligent, gorgeous and have SO MUCH to offer the world. Always know that!

      And DUH yeah we will! Friends for LIFE. xx Once we’ve hugged it’s like set in stone!

  • whoa, 15 years! Here’s to another 15 — you’re going to rock it. And next time I’m in town, you’re taking me on this insanely beautiful hike.

  • Thanks for this post, yes you are an inspiration! MS is really shit because it’s not that well understood, but there’s a lot of research right now to find better treatments – the needles, jeez, 15 years of daily needles, argh!
    That hike you did, the photos look so amazing! I hope I can go there some day.

    • Yeah, I didn’t mention it but my older brother also has it, so research is pretty sure that it’s a familial gene of some kind that you’re lucky to get. 😉 There’s a pill that’a recently come out though, and BOY I HOPE I CAN TAKE IT.
      You have to come here! You’d love it!

  • I am so glad I stumbled on to your blog years ago. You’re so strong and amazing and outspoken and inspiring. Keep it up!

  • you are so amazing, Tracy!!! Somehow I never realized that you had MS. You keep on going and being strong and awesome, lady! You’re an inspiration!!! <3 <3 <3

  • Carla

    Your pictures from Maligne Canyon are beautiful, and so is your spirit! Go you!

  • you are so amazing tracy! i’m really happy you posted about this and i read through the enitre thing. i really believe mindset is a major factor in personal happiness and life satisfaction and this is something i really want to work on, for myself. but its hard dude! i’m such a negative nancy and i know i like being babied too much which is BAD b/c i dont push myself to ‘buck up’. but i’m working on it! 🙂
    my favorite quote, which i really hung onto since i discovered it is ” we are not disturbed by what happens to us, but by what we think has happened to us”. it exactly what you’re saying and i love that.

    • It was long hey, hahaha-I just re-read it myself and thought wow you wrote a lot LOL!
      It’s true! I used to be a negative person too, but that changed after MS for me. I had no choice but to be positive and FIGHT BACK. You can do it Jenn! I know you can!
      LOVE that quote! Gonna keep that one around! xx

  • Toya

    KAPOW!!!!!! You keep rocking life and bucking up Tracy, you’re a great inspiration and reminder to us all to appreciate what we’ve got. Big hugs! xoxo

    • Thanks dude! HAHA, that inspiration thing still bothers me for some reason… I just do ME. Everyone needs to do THEM. And do the BEST THEM. xoxoxo

  • Thanksfor sharing. I really needed to hear this. I have a chronic pain issue and often feel like skipping off my exercise and drugs. However, I seem to feel worse when I skip.

    • It’s true, right? ME TOO. When I skip? I feel more tired, so no no more skipping for me! We should keep each other in line!

  • Emma Bovary

    That hike looked amazing, and I love your positive spirit Tracy! Going to send this to my best friend, she has rheumatoid arthritis among other things and I think it would resonate with her, she is a tough cookie like you x

    • It was amazing!
      Awww, so sorry to hear about your bud…that’s tough…having pain all the time. I’m lucky and don’t have to deal with a lot of pain. HUGS to her! xo

  • You are AMAZING, Tracy, and I’m so happy we’re friends. These are beautiful photos, and I think seeing the beauty in nature (and being able to look for it, too!) really keeps us positive and helps us appreciate what we do have. Your positivity is booming, lady, and you are so, so fabulous! <3 <3 <3

    • XOXOXOXOXOXOXO
      I agree! Being out and about gives me LIFE.
      LOVE you! You are fabulous too my good friend!

  • Angela

    You are absolutely inspirational, Tracy. My hat is off to you. I have a good friend with MS and exercise has been her saviour for the past 18 years she’s had it. And now another reason I love you so much: finding the funny. I feel like a goofball/ smart@ss but you know…sometimes you just gotta laugh (even at yourself sometimes!). I definitely can’t claim to take life too seriously. Unless we’re talking ice cream choices and then the gloves are off.

    • Awww, thanks love! xo
      HAHAHA man, ok…we gotta talk ice cream obviously now…I like anything chocolate…but as I get older I’m willing to experience…you?

  • I needed to read this today. Thank you Tracy. You are amazing and if more people in this world could have your attitude what a fucking amazing place it would be.

    • You are most welcome! And aww, thanks…I just do me. And I hope others can try to be the best they can be too!

  • I adore you Tracy and your nurse is right – you ARE an inspiration with your attitude to it all!!! Look at you hiking, doing your zumba and just getting on with life. That’s all we can do isn’t it, just make the best of what we have. My hubby is a type 1 diabetic and he just gets on with it too. Many hugs to you xoxo

    • Awww, thanks my friend! Your hubby is a hero all these years with Type 1 that’s amazing! HUGS to the both of you xoxo and I await your visit someday!

  • Thank you so much for sharing Tracy, and for the insights. A friend of mine has been going through some chronic pain issues and while it’s not MS, it’s still scary to think about — chronic conditions SUCK but it’s really amazing seeing how you cope with this. WIshing you all the best!!

    • Thanks Teresa! I wish your friend all the best! She’s lucky to have a good friend like you to help her out!