Please Help Save the MS Clinic!

MS Clinich tweetI learned something distressing before the MS Walk began this year.

The MS Clinic at the General Hospital could close in five days due to lack of funding.

This can’t be allowed to happen.

I can stress how amazing the MS Clinic has been to me since I was diagnosed with Relapse and Remitting Multiple Sclerosis six years ago.

When I first started seeing them, I could barely walk and was doing so with the aid of a cane. I was weak and tired all the time and had no energy and lived with vertigo and nausea, bladder problems, difficulty speaking and shaping words, bone crushing fatigue along with a healthy dose of brain fog. I didn’t know where I ended and the MS began. To say that I was lost is an understatement.

The Ottawa MS Clinic changed all that.

I remember my first visit with a neurologist. He was kind and gentle as he took me through a series of exercises that would set a baseline to measure my progress against. The entire time, he didn’t look at me like I was something to be frightened of. He actually listened to me and treated me with respect.

What’s more: he heard me.

He listened to me and everything that I have been through. He paid attention to my experiences with MS and then he told me that with care, we could learn to fight against the disease that raged inside my body.

This was the first time seeing a doctor that I was actually heard, that I was treated as if I knew what was wrong with my own body. I have been going to the Ottawa MS Clinic for six years now. The care I receive has only improved.

I am overjoyed every time I get to go in and see my current neurologist. I love her that much. Seeing her is a joy and a privilege. It’s as if I’m going in to meet a cherished friend every six months…because that’s exactly what I’m doing.

My neurologist has been with me through the highs and the lows of living with my disease. She has been a guiding force in how well I’m doing today.

Case in point, when I walked the MS Walk last year, it took me an hour and a half; this year I did it in an hour and ten minutes. I am stronger because of the clinics care and it can’t be allowed to close.

It’s not only me though. There are 3,500 patients (myself included) that receive the care and help they need from the Ottawa MS Clinic. If it closes, the closest MS Clinics are in Toronto and Kingston and there is an eighteen month wait to see a neurologist.

I would not get the kind of care that I do now if I had to travel to Toronto and Kingston. They wouldn’t know me and I would become just one in many, reduced from being a person with a heart and mind to just one amongst a crowd.

The Ottawa MS Clinic is looking at closure due to cuts in budgets and staffing made by the Ontario PC Government, led by Doug Ford. This cannot be allowed to happen. Too many people depended on it for the care that they give.

I, and the 3,499 other patrons of the Ottawa MS Clinic, need your help

There are a few things you can do.

There is a petition that you can sign and share to your social media to make sure that other see it and sign it. You can find that petition here:

https://www.change.org/p/jack-kitts-save-the-ottawa-ms-clinic?recruiter=false&utm_source=share_petition&utm_medium=facebook&utm_campaign=psf_combo_share_initial&utm_term=share_petition&recruited_by_id=ba5da9e0-6a71-11e9-bcd2-d15e26028b0a&utm_content=fht-15196736-en-ca%3Av2

You can also email the people that hold the Ottawa MS Clinic in their hands:

President and CEO of Ottawa hospital at jbkitts@toh.ca

Chief of Staff of the Ottawa Hospital at vroth@toh.ca

President and CEO of the Ottawa Hospital Foundation at tkuke@toh.ca

Minister of Health at christine.elliot@pc.ola.org

You can also tweet your MP and your MPP like I did (see picture). In short, we all have a voice. It’s time we used it and spoke loudly and clearly so that we don’t lose the vital services that the Ottawa MS Clinic provides.

This really is about quality of life. Use your voice, speak up.

Please.

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We Are All Rock Stars!

The Wolf PackI did my sixth MS Walk on Sunday April 28th. I walked 5KM with my team The Wolf Pack in an hour and ten minutes! That beats last years mark at an hour and twenty minutes! Holy crap, I’m a rock star! I couldn’t have done it without my team. I am more grateful to them than I can say.

Together, we raised $2,325 that went towards research to help find a cure for Multiple Sclerosis. I am so proud of my team. We are all rock stars.

To think that the first time I did the MS Walk, doing 3KM took me an hour. Now I did 5KM in a little over an hour. That Is just awesome.

I can’t wait to do the walk again next year!

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The Fractured Mirror

Small mirrorYesterday, while I was enjoying a hibiscus tea and a salad at the local mall for lunch, I began to have problems with my eye sight.

I started to see semi-opaque white dots appear around my field of vision in both eyes. I took off my glasses and cleaned them and put my glasses back on; the dots were still there. They began to flash as they moved across my field of vision and I was unsure of what was happening, of what was going on.

I remember thinking “Shit, my eyes have never done this before” before the blurriness kicked in. I could hear a child laughing and looked up to see the hazy form of a girl sitting close to me, turned around in her chair. I could hear her laughter and knew she must be smiling because of it, but I could not see her face. I will always remember her and the face I did not see.

I decided to go, that I had to get my coat and go home. I stood and as I did so, my vision changed again. It was as if my eyes had become funhouse mirrors. My eyes work independently of one another and each eye had its own mirror to look through.

Things were blurry but also distorted. The people I could see walking in front of me were cut into pieces, their bodies arriving in my vision sooner than their faces. Other details were blurry, as if my eyes were experiencing sensory overload and had just started to shut down and, amidst all of this, those slightly opaque white orbs.

I’m still not sure how I made it to the second floor. Everywhere I looked, it was as if the mirrors within my eyes had become even more fractured, as if the glass holding the silver had broken. I took my steps carefully and I moved slowly, wondering if anyone around me could sense that something was off about me.

I had a brief notion of going outside for a breath of fresh air and moving on to a different mall, but I had no idea how long this would last or if this would in fact become permanent. I did the only thing that made sense: I sat down and called my husband. He told me to call my parents while he drove back from Kingston. I called my parents and sat where I was to wait for them to pick me up.

I was going to text my husband, but I couldn’t see the words and couldn’t type on the small keyboard of my phone, so I called him instead, pressing my finger to his picture and then hitting the option for mobile. I did the same for when I called my Mom.

While I waited, I meditated on the inside. I tried to remain calm and centered. I can deal with the big things that life throws at me, but I have trouble with the little things. This was obviously one of the big things, something I didn’t have any control over. I sat and tried to look at my Kindle. I could see a cloud of words in front of me but couldn’t focus on the words I wanted to read within that cloud. The same thing had happened when trying to call them before. I just sat there and looked down and tried to remain calm.

By the time my mom had arrived, it had been about an hour and a bit. My eyes gradually cleared, bit by bit. The semi-opaque dots were gone and the fractured look had lessened, leaving me only with slightly blurry vision.

My parents took me to the hospital where my mom explained my medical history to the emergency care nurse. We were triaged in and then began the waiting. Gradually, my eyes became clearer so that I could see without too much blurriness. By the time my husband arrived, they were at almost full sight.

My parents left and my husband and I waited some more. I was visited by two nurses that took measurements and tested my eyes and gathered info for the doctor. When he finally came in, he could tell me…nothing.

He said that if I had had the white spots in only one eye, that that would signify something concerning multiple sclerosis. As it was, the only thing to do was to go home and to go in if it happened again.

Not the best medical advice I had ever received, but not as bad as it could have been. After nearly six hours at the hospital, I was allowed to go home. Today, that ten percent of my vision that had been missing gradually got better. The blurriness went away and now I’m seeing at 100% again. I’m not entirely sure what happened but will remain alert if anything changes. I have an appointment with my neurologist on the 17th of April so we will see what she says.

In the meantime, I will just sparkle on!

 

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Little Yellow Magnet – Available Now!

little-yellow-magnet (1)I’m thrilled to announce that Little Yellow Magnet is AVAILABLE NOW! Isn’t that amazing?

Here’s a bit about the book:

Life can change in an instant. Jamieson learns this the hard way.

 

Waking one morning to find he has little-to-no motor control, Jamieson only wants the world to return to how it had been before. After a diagnosis of Multiple Sclerosis, he thinks his life is over. What he doesn’t know is that it’s only just begun.

 

Trying to navigate through the world in a body he no longer understands, Jamieson must travel through the dark forest of depression while waging a constant battle against himself. Over time, he learns what he’s truly capable of, and what it actually means to be courageous.

 

Follow Jamieson as he loses himself…then discovers who he is really meant to be.

You can find Little Yellow Magnet here:

Paperback (Canada): https://www.amazon.ca/Little-Yellow-Magnet-Jamieson-Wolf/dp/192810116X/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1551834431&sr=8-1-fkmrnull

Kindle (Canada): https://www.amazon.ca/Little-Yellow-Magnet-Jamieson-Wolf-ebook/dp/B07PCSC3G4/ref=sr_1_fkmrnull_1?keywords=Little+Yellow+Magnet+jamieson+wolf&qid=1551834431&s=gateway&sr=8-1-fkmrnull

Paperback (US): https://www.amazon.com/Little-Yellow-Magnet-Jamieson-Wolf/dp/192810116X/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1551834500&sr=8-1-fkmrnull

Kindle (US): https://www.amazon.com/Little-Yellow-Magnet-Jamieson-Wolf-ebook/dp/B07PCSC3G4/ref=sr_1_fkmrnull_1?keywords=Little+Yellow+magnet+JAmieson+Wolf&qid=1551834500&s=gateway&sr=8-1-fkmrnull

Kobo: https://www.kobo.com/ca/en/ebook/little-yellow-magnet?fbclid=IwAR1slQgPiaZ5aVucJDH-4tPH4KGOHOZwcbkevj5_zSSy3qRwM61fty55ykw

I’m thrilled to be able to share this book with all of you. Stay tuned for more details of upcoming events!

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Little Yellow Magnet – It’s Almost Here!

Ilittle-yellow-magnet (1)t goes without saying that Little Yellow Magnet was a difficult book to write. It was also the most rewarding.

When I first started writing it, I called Little Yellow Magnet my little book of positivity. The idea behind it at first was to write about the positive moments during my journey with multiple sclerosis. The only problem was, I only got to page twenty-seven before I realized I was going about it all wrong.

From the moment I woke on January 31st, 2012 with my body no longer my own to the moment I had the idea to start writing about it; well that was all part of my journey. To focus on only the positive elements of that journey would be doing myself a disservice.

Every step along my path, every moment until now was all part of my journey. I couldn’t just write about the part of it that left me elated. I had to write about everything. This filled me with some trepidation.

Like every writer, I put myself into everything I write. Certain characters are based off of me or events that happened in my life are used in my books. However, that is all done with the smoke screen of fiction. I’m a bit more open when I write poetry, trying to make sense of something, but there is always some sort of poetic licence there.

With a memoir, it would be me on the page with no smokescreen, no great giant head of OZ to hide behind. It would be me, completely and in truth. That was clear to me. If I was going to write this, if I was going to go down the road that I have travelled, there would be no sugar coating of anything.

I took a moment to pause before I put my fingers to the keyboard again. My journey deals with a lot of other issues other than my diagnosis of multiple sclerosis. It talks about already living with cerebral palsy, mental abuse, depression, suicide attempts, dating in the gay community while also having a disability.

I had good long think about whether writing it would be a good idea. I came to the conclusion that, at the very least, it would be a cathartic release for me, a closing off of one chapter and the beginning of a new one. Then, if I did decide to publish it, my hope was that it would help people. There are so many others that are dealing with so many things I’ve touched on in Little Yellow Magnet: dramatic changes, disease, depression, abuse. If the book helps even one person, than that makes everything worth it.

Ultimately, the book is about what it took for me to surmount all my challenges and choose to live. Make no mistake, despite the subject matter, Little Yellow Magnet is about what it took for me to try and live a better life by honouring the life I had, no matter what it involved.

I learned a lot about myself through the writing of Little Yellow Magnet. Having my journey laid out on paper, it was impossible not to. I can’t wait for you all to read it yourselves. It seems amazing that the memoir is almost a reality and that other people will be able to read it.

It’s not that long away now. I can’t believe that, after a year of writing and a year of exits and preparation, that Little Yellow Magnet is almost here. It’s available on March 21st, 2019.

Thanks for being part of the journey.

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From This Moment

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I had my follow up appointment with my neurologist last week.

We wen through the normal tests that we do, chatting up a storm, catching up on everything that is going on in my life, the trips my husband and I have been on, etc. While it was lovely to see my doctor again, at the back of my head was the niggling worry. I wasn’t sure that I would want to hear what she would have to say.

Eventually, she opened up the photos of my last MRI and my new MRI and put them side by side. There were three new lesions. They were small, like three white islands in a sky of grey clouds. Looking at them, my stomach dropped a little. She explained that the lesions may have been there before, that the MRI technology was a lot better than three years ago when I last had one.

I heard her but her words hit a barrier of numbness. I went through the motions and nodded in all the right places. She explained about a new medication and that it was a pill, so I wouldn’t have to take a daily injection; that the pill wouldn’t just prevent relapses, it would also stop the progression of the multiple sclerosis.

I took a day off work the next day and had bloodwork done in preparation for the new medication. I was still kind of numb. As much as I knew that this new medication was probably a positive thing, it was also angry.

I was angry at my body. I was angry at myself, at the world, at everything and everyone. As the nurse inserted the needle, I imagined that the blood she was taking from me also took my anger from me, that it was a cleansing of sorts. I was numb, I was saddened and I was so angry.

I’ve changed my diet three times, I’ve quit smoking. I’ve kept up an exercise routine, three times a week since 2014. I even swim two to three times a week and go for two 1.5KM walks a day, all in the effort to keep and stay mobile.

I’ve done everything I can think of to beat the MS. I even look at it as a gift in a way. I am thankful for it as it taught me what really matters in life. I’m grateful for what the MS has shown me about myself and what I am truly capable of.

I had done everything…and still, it tried to best me.

So, yes, I was angry. I looked at those three small island on that MRI x-ray and pictured them melting into the clouds.

I posted to Facebook about what had happened and what was going on. Everyone’s comments made me cry; they helped me to realize that I wasn’t alone in this, that there was an ocean of people in my life that cared for me. Almost every one of them told me the same thing: sparkle on.

That’s become my motto, of sorts. It’s part of my positive way of thinking. I picture the world full of sparkles and if there isn’t any, I spread them around. I had forgotten in this moment to give myself some sparkle.

I realized that, though I was angry and numb, I was also afraid. I am afraid of the disease that I carry within me and what it could do to me, should I let it, but that’s okay. From fear comes courage and I’m full to the brim with courage.

I have been living my life since 2014 by doing things one day at a time. I’ve come to realize I’ve been doing it wrong. It’s not every day that counts, but every moment. Every day is filled with an ocean of moments, and I have but to cherish all of them.

Mostly, through all of this, I had forgotten my super power: my ability to sparkle brightly, no matter what was happening in my life.

On that day when I had the bloodwork done, I didn’t sit back down at the computer. I tried to heal myself in a different way. I went to my easel instead. I painted for the first time in over a year and it just came out of me. I called it Spirit Fire. I think it’s very telling that I painted fire first, almost as if I wanted to burn away the sadness that I was carrying within me.

More than that, it’s the fire of my spirit and it burns as brightly as I do. I will survive this as I always have. I will burn brightly and sparkle from this moment and the next.

I will burn brightly.

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A Hard Way To Learn a Lesson

I’m never counting steps again. Here’s why:

On the way home, my bus broke down due to all of the snow that has been falling today. The driver didn’t know when another bus would come but he gave an hour to an hour and a half estimate. I’ve walked home from where the bus broke down before, but usually in Spring, Summer or Fall. Well, I said to myself, it’s all good! I can still do it! And! I can get my steps in!

I went to get off the bus and promptly lost my balance in a very large snowbank. I tried to get up and couldn’t. A woman behind me on the bus said “Are you okay?” Instead of saying “No, I’m not okay, I’m being an idiot trying to walk in the snow!” I said “I’m fine!”

Then I promptly lost my balance again. I couldn’t get up. The woman got out of the bus and pulled me up out of the snowbank. “Thank you very much.” I told her. She told me to be safe.

I walked onward. Well, let me tell you something: walking a route in Spring, Summer or Fall is a lot different then walking it in the Winter. It seemed to take forever and my legs started to spasm part way through the walk.

Now, if I’m anything (sparkly, fabulous, awesome are good suggestions), I’m stubborn. So, I told myself “I’m almost home, I’m almost home. Just a little bit further.” I had no other choice really. My husband was in meetings and I didn’t want to call a cab for such a short distance.

I made it home and my legs and body are in agony. I looked at my phone, as one does, to see how many steps I’d done, and it was almost 10,000. I had also walked 2.96 KM’s in 35 minutes. In comparison, five years ago in my first MS Walk, it had taken me just shy of an hour to walk 3KM and that was in Spring conditions without snow and ice on the ground.

While I’m proud of myself (I couldn’t have done that five years ago when I was diagnosed with my MS), I’m mad at myself. What I should have done was wait for a new bus to arrive, no matter how long it took. I was warm, I had my Kindle.

While it’s really cool that I walked almost 3 KM and almost 10,000 steps, was it worth it? What did I prove to myself, aside from the fact that I’m stubborn? In the end, it doesn’t matter how many steps I do during a day. It’s enough that I’m walking at all. I need to remember that and start being kinder to myself.  It was a hard way to learn a lesson.

Also, to the lady that helped me up when I had fallen in the snowbank, thank you for proving that kindness really does exist.

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