Sunday, 1 November 2020

This is My Body

Multiple Sclerosis is a disease of the central nervous system.

The brain, spinal cord, and optic nerves.

All three of those areas are affected in my body.  Through lesions visible on MRI, blindness or corresponding symptoms.

We often don't talk about the symptoms of the medications themselves.  

Our treatments.  Our hope.

I have switched medications many times, hoping for "the one."  But it hasn't happened yet.  So I end up back in my safe space, with a medication that doesn't make my body more sick, or revolt into immune war.

The downside is skin issues.  I don't normally talk about this (Or pull my pants down to show you). But here we go...

I do a daily injection.  And this is what it looks like afterwards.  Seven different spots on my body, rotated around each time.  Thighs, stomach, arms, hips.

I need to switch the injection locations because of lipoatrophy (the localized loss of the body's fat cells from repeated injections).  These bruises turn into permanent dents and depressions in my skin that I hate.  Yes, they are my battle scars, and yes, they are proof something is helping my life.  I am proud that I take medication to help me.  I am proud that health comes before vanity.  But almost 10 years of this isn't fun, isn't pretty, and it hurts.  

The part of a disease we don't often see - what we need to do to treat it.  




Friday, 21 August 2020

Eight years

They say it's important to remember the days in our lives that change us.  Define us.

So each year I do this.

Eight years ago today I walked into a doctor's office alone and was told my life would never be the same.  Multiple Sclerosis. 

A diagnosis that would forever change me.

I don't mark this day for sympathy or pity.  But to mark that I am here.  I am surviving.  I am facing the daily challenges as best I can.  And I am moving forward.  

I mark this day to measure how far I've come. I've never stopped fighting or advocating.

It has been harder than I ever could have imagined.  But I have done it; and will keep doing it.

And so today I celebrate the past 8 years and my hope for the future.




Sunday, 24 May 2020

Virtual MS Walk

This year has a lot of new normals.

We are living through a worldwide pandemic.

Most aspects of life have changed.  Families have changed, homes have changed, jobs have changed. There is less money to spend, and quite frankly, less money to donate to charity.

I haven't been able to go out into the public in over 2.5 months because I am so immunocompromised (except my property and street). No groceries, picking up odd things, or eating out.  And my mental and emotional self is really, really suffering.  It's so hard.

But I am beyond thankful that the MS Walk was still able to continue this year, albeit virtually.

People from around our country walked in their yard, their neighborhood, or found a quiet spot.

The spirit was definitely still there.  The love was still felt.

And a lot of money was raised.  That makes my heart happy.

Team Making Lemonade has now raised almost $40,000 since we started participating eight years ago.

And this means the world to me.

Thank you for all the support.




Monday, 24 February 2020

Exercise and MS

I'm very familiar with pain.

And coordination problems.

And intense fatigue.

Living with MS is hard. Its constant. Its painful and debilitating and sometimes depressing.

But I've learned that the only things I can control in life are my choices and my reactions.  Especially with regard to my MS.  The disease itself is not mine to puppeteer.

And MS won't stop me.  Pain won't stop me, imbalance won't stop me.

They never have.  Maybe I'm stubborn or maybe I'm determined.

I've made the choice to do what I can with my body, and to embrace my ever-changing abilities.  But I felt I needed some help to guide my physical activity in the right direction.

I started working with Tara Zorn, personal trainer, of Tara Zorn Fitness, to work on keeping my body healthy and strong, especially as I age with a disease like MS.  I wanted to become stronger, to become more familiar with my abilities, and to work with my pain and myriad of symptoms.

Exercise and moving is what our bodies are supposed to do.  And if we stop completely because of pain or any other symptom, it weakens us, it ages us, and it makes us unhealthy.

Tara knows this, and her motto is actually "Believing exercise heals."

And I believe it now.

Not in the sense that exercise will "cure" my MS, but in the sense that having a stronger, healthy body will make me more equipped to live with me MS.  Make me happier and less stressed.

And things are going really well with my new regime.  I can do things I never expected, while still listening to my body closely, and I am surprising myself!

I've been having constant foot pain for four months now, and haven't been able to walk much at all.  Not being able to walk has affected my mood and my body.  But Tara finds exercises for me that don't affect my foot pain or even always involve my feet.  Its been amazingly helpful.

My normal isn't what it used to be, and I need to make accommodations for my MS.  But moving and exercising, plus being conscious of what I consume (and no after dinner snacking!), makes me stronger physically and mentally.

I'm losing weight, losing inches, gaining muscle, and feeling awesome about myself.  Even while living with pain and a degenerative disease.

Thank you Tara, for pushing me to keep going.  And for working with me through MS and all the challenges that come with it.





Tuesday, 7 January 2020

Definitions

It's really surreal to read a description of your disease and symptoms - written by someone else.

In this case, my doctor has described my MS.

Even when you know what MS entails; the odds and stats. When you see it on a piece of paper right in front of your own eyes, you still have to wonder Is this really about me?

Yes, it is.

Permanently disabled.  Condition will deteriorate.  

Deteriorate.

That word is stuck in my head.  You mean it's going to get worse?  Yes, most likely.

And that means even more changes, more lifestyle adaptions, more assistance, more help.

And yes, the past few months have been much more difficult.  I've been having problems walking for two months.  My role as a "professional patient" has been expanded so much more because of that - trying to figure out whats going on.  Trying new medications.  Seeing different types of doctors.  This on top of my usual fatigue, imbalance, vertigo, and reduced ability to do more and more things.

Every day I drag myself somewhere, to some appointment.  In so much pain.  Just hoping it gets better.

And then I see that word again - deteriorating.

And I know it. It's been 10 years since my symptoms started.  It's the expected time to deteriorate.

But I'm not giving up. 

Yes, I have more pain now.  Yes, I can hardly stand still without losing my balance or wobbling over.  I need to sleep more than a toddler.  BUT -  I am starting some adaptive training this week, and am so excited.  Abs of steel, here I come (ha!).

And despite the new word stuck in my brain, I still have a word I focus on more.  The one word I couldn't live without.






Tuesday, 22 October 2019

Three years

Three whole years.

It's unbelievable.

I remember every detail of that moment.  The weather, the room, what I was wearing, who was there.

My heart broke.

And it hasn't healed.

You are missed more than anything, and remembered every second of every day.

I talk a lot about you.  Especially to the boys.  To keep your stories and memories alive.  They always say to me "don't cry, Mom."  But I do, and tell them its okay to cry.  And sometimes they do too.

I know you are with us.  I can feel it.  I know you help me get better when I am really sick.  I know you are out there in the universe.  When a hungry hummingbird comes to our feeder, I know.  When a flash of memory hits me out of nowhere, I know.

I wish I could go back 20 years and tell you how much you taught me and how much I always needed you.

I work hard to continue your legacy.  Your values and goals.  And I'm proud of that.

So today, I'll take a quiet walk through your favourite woods and I'll raise a glass to toast you.  The greatest, strongest woman I have ever known.

And I'll find another story of you to tell the boys.  Your grandsons.  They miss you so.

O will be 9 tomorrow.  The day after you passed is the day he begins a new year.  How lucky he is.  The cycle of life continues.  And both boys are here, learning from you still, and showing the world who you were.

We miss you Mom.  So much.


Friday, 11 October 2019

Unplanned thoughts

Last weekend was the MS Connect conference, at which I was able to present my story of living well with MS.

I had written in my calendar to recap that conference through a blog post this week.

Big change of plans.

I'm not sure what has happened, but that is the nature of this disease.  We never know what, or when anything will happen.  That's the hardest part.

I have been mostly sleeping for 2 days now.  Headaches so bad nothing is even touching the pain. And now a consistent sharp banding pain around my chest, known as the "MS Hug."  Imagine the feeling of getting the wind knocked out of you, add in consistent intolerable pain, and have it last for days - that's my variety of the MS hug.

So I'm sorry this isn't a conference recap.  Because there was some incredible information and advances I'd love to share.  But I need to take of me right now.

I'm not writing this so you'll feel sorry for me.  I'm writing it because this is my personal therapy.  And because living with it can be so hard.  I need to keep creating MS awareness and knowledge - of the struggles, the symptoms, the experience. The message still hasn't been understood by so many.

I feel absolutely awful.  The worst in a long time.  So bad I almost cracked open my Mom's stage 4 cancer morphine from 3 years ago.

If it continues tomorrow I'll assess my hospital options.

Healthcare needs to be a WAY bigger concern in our society.

Thanks for reading and listening.  It does help. 

And as I always promised myself.  And a big part of how I do live well with MS (most of the time) - a joke to end the post...