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…
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. 😀 😀