A Decade

I've been pretty quiet on social media and this blog for the past few years. 

A pandemic and a neurological autoimmune disease (plus 1.5 years of home schooling) has made life a lot different and a lot more challenging.

But, I am still going to take the time to recognize this day and its significance. Because it has been an entire decade of living with MS. A decade of so many medical appointments, hospital visits, and well over 3000 at-home injections. A decade of many unknowns and many ups and downs.

A decade of having vertigo and balance issues, plus constant fatigue that feels like being stuck in the mud. Numbness, loss of vision, nerve and sensation damage.

But you know what? I am so proud of myself. Proud that this has become fairly "normal.” As my Mom used to say (I would get so mad when she said this), I truly have "learned to live with it." It's part of me, without defining me. I can still thrive AND have multiple sclerosis.

To the people who have remained constants in my life during this time - thank you. It makes a bigger difference than you know. Thank you for knowing that I need to rest a lot, and can't always do the things I used to do. Fighting a mostly invisible disease is lonely, and kindness keeps me going.

So, it's been 10 years. I'm here, fighting (but with more naps now) as best I can.

I never could have imagined I'd get Multiple Sclerosis, and it took a while to accept it. But living with a disability truly has helped me grow as a person, better advocate for myself, and learn to shut out anything that doesn't serve me or my life. It’s sometimes surprising to me that it took facing illness, disability and mortality to better value myself. For that part of this experience, I’m so grateful.

Here's to staying healthy-ish!

Nine years

Nine years seems impossible.

A time so far removed from the present that it seems surreal.

I remember I had a one year old then. One. Just a baby.

I've come to realize that it's important for me to recognize this day each year. As a moment in time that life became something completely different.

Nine years ago today I was given the news I had multiple sclerosis.  Everything changed.

At first, it was for the worse. It was challenging to navigate the new physical effects of the disease, but also the intensely emotional.

Now, it has become so normal.  A moment of losing my balance, needing to take each step so carefully, or getting so dizzy I need to spend hours in bed don't faze me. 

It's amazing how adaptive humans are.

So today, I celebrate my resilience, who I have become, and my hope for the future.

And we keep moving forward...

 

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.  

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.

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.

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.

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.