Dear MS…

Dear Multiple Sclerosis,

We’ve been seeing each other for quite a few months now, but I know it is just the beginning of our relationship. When we first met I didn’t know much about you. I had heard your name before but never really given you much thought. But then you showed up one morning and changed my life forever.

You brought with you some of your not so pleasant friends. You know the ones I am talking about…numbness, tingling, lesions, burning, dizziness, and fatigue to name a few. You introduced me to steroid infusions, injections and MRI’s. I can’t say I’m a huge fan of those guys either.

You scared me more than I have ever been frightened before. You make me feel weak. You make me feel sick. You make me feel isolated and anxious. You took away my trust in my body.

You’ve been a tough pill to swallow. I’ve hated you, been bruised for you, and miss out on fun things for you, when you demanded it.

But I have not given in to you. I won’t ever stop fighting you. You may be a part of me now, but you are not what makes me me. 

Despite your efforts, I have stood back up each time you’ve knocked me down. I have learned that I am stronger than I ever knew I was. You have taught me take my body seriously. To listen when it’s signaling to me that something is off. To focus on the positive more than the negative.

I have learned that even on my sickest days, I have people around me who will support and care for me. That I am never alone. I have learned that the power of love will shine bright enough to light up even the darkest of nights and frighten away even the most ghoulish of nightmares. I have learned to be courageous, even when I don’t want to be.

I have learned to take things a little slower and enjoy each minute. To stop and appreciate the everyday things and the beauty all around me. I have learned to love more fiercely, to be more quick to forgiveness and slow to anger. I have gained a compassion for life and the miracle that it is!

So in the end…I cannot hate you. For what use would that be? I’ve chosen to grow, rather than sit still. I’ve chosen to be inspired, rather than be afraid. I have chosen to fight. My life is still my life.

Sincerely,

Mrs. MS Strong

 

The Power of Words

Today I have been thinking a lot about the power of words. I obviously have a passion for the written word (or I would not be blogging!), and anyone who knows me knows that I have quite the strong relationship with spoken words as well. I have never been the type of girl who holds her tongue and yes, it has gotten me into trouble more times than I can count, but I do not resent this quality I have.

Words and language are such a powerful gift that we have as humans. It’s one of the things that separates us from the other animals in the animal kingdom. Language is something that humans are drawn to. From our first words to our last, it is so present in our every day lives. We use language for communication, entertainment like theater, music and poetry. We can fill someone’s heart with love and comfort with just a few words and with the same amount we can tear someone down, or hurt them more than we know. Words are so powerful.

“Nothing’s gonna hurt you the way that words do
And they settle ‘neath your skin
Kept on the inside and no sunlight
Sometimes a shadow wins
But I wonder what would happen if youSay what you wanna say
And let the words fall out
Honestly I wanna see you be brave” – Brave, Sara Bareilles 

I talk a lot. Anyone of my family or friends will tell you that. I’ve been jabbering away constantly practically since I came out of the womb (seriously, the doctor told my mom that I had a LOUD cry, which is saying something coming from a man who delivers babies every day of his life…).

I’ve always been the type of gal to say what I think, even if it’s not what other’s want to hear. As I have matured and grown older, however, I have learned how impactful my words can be. It has not changed the fact that I still speak my mind and speak my honest truths, but I have learned to be careful not to be harmful with my words.

I am not always successful with this. I have said things I regret, have hurt people with my words. I have regretted not being brave enough to say something that should have been said. I am not proud of this. But we are all human, we all make mistakes but we are learning. What is important is that we recognize this and work each day to get better at communicating with love, compassion and honesty. All we can do is try.

I think it is easiest to forget how impactful our words are when it comes to those we are closest to. That includes the words we think and speak to ourselves! I want to challenge myself to be conscious of the words that I not only say out loud, but think. I want to challenge myself to communicate with my loved ones in a way that is focused on love and understanding, especially when we have a disagreement. Hurting someone with your words is not going to help you, maybe in the moment you will feel better. But you are actually hurting yourself and the ones you lashed out at. After the adrenaline rush wears off and the sense of needing to defend yourself ebbs away you will be left with guilt, regret, and sometimes, embarrassment.

You cannot take back words that have been said, good or bad. There is no magic spoon to scoop them back into your mouth. Once you send them out into the universe they are there. Forever.

Someday, when all that is left of us is our words, I hope that I will have left people with more smiles on their lips, laughter in their hearts, and peace in their souls.

-A

MS Strong

I’ll remember that phone call most likely all my life.

The one that stabbed into my heart and stuck there like a knife.

I woke up with no feeling in those fingers and my toes,

With no idea what havoc those small symptoms could expose.

 

You see them in the movies, or hear about them in a song,

Those moments when your ‘normal’ ends and the seconds just drag on.

No one can prepare you for that moment, for that day

When you find out that you’re sick, and it will never go away.

 

I first react in fear and panic, in shock and disbelief

Numbly listening to the doctor, my hands shake, why can’t I breathe?

It’s “indicative of MS”, “ok”, “do you know what that means?”

“No, not really.” My voice shakes, my heart is racing, please help me.

 

Multiple Sclerosis is what the doctor then explained.

All I heard was that it was in my spine and also in my brain.

Something in my body wasn’t right, was really wrong.

It’s funny but looking back, it had been that way so long

 

I held myself together, saying “everything’s alright”,

Until I broke down in the shower later on that night.

My husband sat beside me, as we cried there on the floor,

Knowing that from here on out it’d be so different from before.

 

We were right, and things have changed a lot in half a year.

MS has put some things on hold, like having a career.

It’s hard to work when you cannot stay awake

And the slightest change in weather makes your whole body start to ache.

 

But It hasn’t all been bad, these lessons that I’ve learned.

I’m proud of all my bruises and battle scars I’ve earned.

I’ve grown, and I am learning to live in the moment every day,

To connect to life around me, and let my heart show me the way.

 

I married my best friend on a cold night in late November

A night of love and family that we always will remember.

Those around us showed support and an avalanche of love.

Love is something this disease can never get rid of.

 

I faced some of my hardest nights, have felt so vulnerable, so scared,

But I learned that when you learn to ask, someone always will be there.

Some days I feel my weakest, and some days I feel so strong.

Some days the world feels right and some days everything goes wrong.

 

I will continue on this journey, I will continue on his fight.

I will use the gifts I’m given to spread awareness and shine light.

We’ll find a cure and I’ll keep singing my fight song.

Do you feel as good as I do now?

Because this is MS Strong.

When you realize a weed is actually a flower…

As I write today I have blisters and scratches all over my hands. I spent the morning outside weeding the front garden. As new homeowners, my husband and I are constantly surprised by things we never realized came along with owning a house. Things like having to call your first extermination service because there is a wasp infestation in your deck railings. Or the first time the upstairs toilet overflows. Or realizing that if you open the upstairs bedroom and bathroom windows at the same time your upstairs doors will all slam shut and scare the poops out of you! All of those lovely, first time homeowner memories will be cherished forever, I’m sure.

We bought our house in the fall last year, so we didn’t really get to see what the trees, flowers, plants around the house looked like in full bloom. Much to my surprise this spring, once our yard finally emerged from its icy blanket of snow I realized that we have quite the little garden started in our front yard! Unfortunately for said garden it took me about a month to realize that the plants growing were in fact intentional, not weeds. Now that I have realized my error (sorry flowers!) I decided it was time to get to work on weeding my garden and cleaning up the front of our house.

Again, knowing nothing about gardening I learned a very important lesson that I shall pass on to my children and my children’s children.

“When one weeds their garden, one must wear gloves, lest their hands will harden”. – A less wise me

Yep, once these blisters heal I intend on having some nice calloused hands to show off my gardening status!

Beginner…the status is beginner.

No matter, I am still proud of the work that I did today. It was hard, physical work, but in a way it was deeply cathartic. Yesterday we buried my husbands grandfather. It was a day full of family, sorrow, memories and love. It was truly a beautiful reminder of what is important in life. Faith, family and love.

As I was weeding the garden, early this morning, I couldn’t help but think. I thought about the past, namely the day before. I prayed for my husbands grandmother and the rest of the family as they process their grief and loss,  and that they will feel a healing in their souls.

I also thought about the present. As I continued to weed the garden the my body began to ache, it was getting warmer and I could feel my fatigue starting to take its toll. But each time I looked at my progress I felt such a sense of accomplishment that I forgot how tired I was. I forgot how easy it would be to just go inside and do this another day.

In those moments I felt weak I was finding comfort and strength in helping another living thing. By clearing out the dead branches and leaves around the roots of the plants to help them better grow. I felt comforted by watering the flowers as the hot sun threatened them and by sweeping off the path walking up to our front door, creating a welcoming pathway.

By the way, while I was doing this I found and AMAZING pink rock. It’s a bit bigger than my fist and beautiful. I put it on our front step. Talk about good energies!

 

Even though the work was tiring and physically demanding, it energized me to be taking care of nature and allowing myself to only worry about one task at a time.

I think that we can think of our own minds as a garden. We need to nourish it, feed it, and care for it to help it grow. And it won’t always be butterflies and rainbows. It tough work. But good work.

Whether it be through reading, writing, gardening, doing an activity you enjoy or learning about a new subject that interests you, I think it is important to keep growing our minds, no matter how stressful or how busy our lives get. We need to remember to take the time to stop and ask ourselves how we are doing. Check in with your body and mind and give it the care it needs! And always remember that you are not alone. There are always people who care about you and appreciate you and think of you. Even if you don’t know it.

I am wishing everyone peaceful minds today and an evening full of love and comfort.

-A

 

First Injection Day: √

Today was the big day, injection training! For those of you who have read my blog before you know that I was recently diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS). Since my diagnosis I have had a lot to wrap my mind around. As someone who suffers from some pretty intense anxiety to begin with, it has been…challenging to put it kindly. But one thing that I have been working up the courage for was beginning a disease modifying drug.

Disease modifying drugs work to slow down the progression of MS. There are various drugs (I think 15? currently on the market in the US) that can be used to slow the progression of this disease. These drugs range in effectiveness, risks, and the methods in which they are administered/how they work in the body.

There is no cure for Multiple Sclerosis. There is no way to undo the damage, if permanent nerve damage has already occurred. One of the biggest misunderstandings I had (and I think many people would have) about the treatment I am starting is that it does not make you feel better. It doesn’t really alleviate any symptoms, rather it gives your immune system something different to attack rather than your own myelin (protective covering of the nerves. Think of someone with MS as having a cellphone charger with the wires exposed). The hope of this treatment is that it will slow the progression of my disease and delay my next relapse or attack of symptoms, maybe by months…maybe by years!

The treatment I chose to start with is Glatiramer Acetate (the generic form of Copaxone). Glatiramer Acetate has minimal side effects, mostly confined to the injection site and does not cause long-term damage/risks to the reproductive organs. This was really important to me. I have already lost so much to this disease, I didn’t want to risk losing my future family too. So I wanted to try this less aggressive, albeit sometimes less effective, treatment option first. This drug is injected into the fatty layer under the skin either daily or three times a week, depending on dosage.

I’ve been trying to wrap my mind around giving myself shots for a while now (pretty much since I started researching treatment options last fall) and have been rather nervous about it. All it would take was the image of myself pushing a needle into my own tummy and my vision would go dark, hands and feet go numb and the room starts to spin (funny, those are all MS symptoms too! Yay anxiety, double the fun for me!) I tried to comfort myself by reminding myself that I would be thoroughly trained on how to safely inject, I would have my husband to help me if I really was that squeamish at the end of the day, and that when it comes down to it I could just inject in other body parts that made me feel less freaked out.

But all the self soothing in the world couldn’t keep that bossy voice of anxiety from running her mouth in the back of my mind.

But this morning came, and so did the nurse to show me how to tackle my newest MS challenge.

I just have to give a shout out to my nurse, who did an absolutely amazing job teaching me everything I needed to know and making sure I felt comfortable and ready to give my self my first ever injection.  And that is just what I did, and in my tummy no less! I decided that if I am going to face this fear I am going to face it head on!

It wasn’t too bad! The injection itself just felt like any shot does. There was some pretty strong stinging and burning for a few minutes after, while the injection spread, but it passed within a few minutes. As I write this, the only indication that I had such a life changing morning is a slight ache in my abdomen and a tiny dot where the needle went in. That’s it.

It’s funny. There are many moments when our lives change forever, and they pass without us even realizing them. Moments when we fall in love, take a stand or face a challenge. Sometimes they’re big, sometimes they are small. As small as pushing a button and a tiny needle injecting you with not just a medicine, but hope.

Hope that this disease won’t progress. Hope that I’ll have many years of health ahead of me. Hope that I’ll grow nice and old and have a family of my own to watch grow up too. Hope that one day I can look back at this time of my life and be proud of the bravery I showed, even when I felt like hiding. Hope that one day we won’t be on here talking about a treatment, we will be talking about the cure.

Until then, I will continue to learn each day, to cherish the peaceful moments and to fill my heart and the hearts of those around me with as much love and positivity as I can muster.

-A

“Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.” – Albus Dumbledore

Photo by Miriam Espacio on Pexels.com

The Tides of Life

The Future is a silly thing

She dances in and out of view

Once you think you know   what she’s to bring

She’ll leap and switch it up on you.

 

Her very best friend, I speak of Fate,

Is strange and wise and full of truth

Though many minds obsess   and fixate

He’ll only reveal himself    in time to you.

 

No use in trying to change Destiny’s mind

For she cares not for mortal whims

And any man who tries will find

That when chasing the future

You leave the present behind.

 

The simple moments we discard too soon

The memories we forgot to store away

Someday I’ll search the corners of my mind, where you lay strewn,

And find a special place    where you can always stay.

 

For in the darkest night we find

That though the uncertain dance of Future, Fate and Destiny confuse

Our hardest times help to define

The truest path for us to choose.

 

Just put your faith in those above

And trust our angels to watch down

And guide us to live lives full of love

For those who we remember are never gone.

 

And when the tides of life are rough

I’ll stand ashore, right next to you

And slip my hand though yours,     you say “that it’s enough,

The tides have got to change for us”

 

The tides will change, they always do

The sun will surely shine again

And when it does I’ll still be here

Standing with you, until the very end.

 

-A

 

Happy Mother’s Day to all the Mama’s out there!

First of all, let me just say that Mother Earth could not have given us more beautiful weather on a day meant to celebrate some of the most beautiful people on this planet! Happy Mother’s Day to all the mothers, mothers in law, grandmothers, great grandmothers, moms to-be, dog moms, cat moms, horse moms, chicken moms (special shout out to the Sparrow mom building her nest in my African Daisy’s on my deck. You go girl! Keep on…mothering) ALL THE MOMS!

But today, I want to focus on a very special mom in my life (no it is not the bird).

My mom.

I have a pretty badass mom. For those of you who know her, you already know that 😉 But for those of you who don’t, just let me tell you…this woman is amazing. She has taught me to be the woman I am today. She is compassionate, loving, creative, quick to laughter, quick to tears (just like me!), fiercely protective of her family and fiercely loving of them too. She taught me how to forgive, even when your heart has been broken. She taught me to dream and to believe anything is possible in my life. She taught me to fight for what I believe is true and right. She instilled in me a deep love of books and stories and truly made me the creative, old soul I am today.

***Ok I am sorry, but we need to pause here to appreciate this photo. The woman lugged around my wriggly butt for 9 months, JUST pushed a seven-pound child out of her vagine… and now she’s got to sit there on a landline and CALL EVERYONE SHE KNOWS to tell them I was born! Come on kids, let’s appreciate our moms for a second. Not only did they give birth to us but there wasn’t no Facebook, Snapchat, Instagram, or Group Text to tell your friends and family you had your baby. Nope! You had to grab a landline, dial in a number, and actually speak to a human. Scary. Let’s also give a shout out to my mom who again literally just gave birth to me and is STILL on fleek! LOOK at that 90’s queen!

I want to just say “thank you” to my mom. I don’t think I will ever say it enough. So here it goes…

• Thank you for giving me life.
• Thank you for teaching me to be myself (no matter how much of a weirdo I may be!)
• Thank you for showing me the way to Narnia, Hogwarts, and Middle Earth.
• Thank you for keeping me safe from those who tried to harm me (even though I fought you at the time. You and dad saved my life)
• Thank you for always forgiving me even when I was a little shit.
• Thank you for always trying to understand me and my views even when they are a little “out there”
• Thank you for teaching me to bake.
• Thank you for gently guiding me back to my true path when I have strayed, but never forcing.
• Thank you for making me play outside and wait to get a cell phone.
• Thank you for comforting me every time I call and still being my go-to person to calm me down when anxiety takes over.
• Thank you for always being the first one to offer to be at my side during medical procedures and appointments.
• Thank you for being the amazing, compassionate, eager to learn, creative, loving mother of mine.

 

Happy Mother’s Day Mama,

Your Baby Girl