PLEASANTLY ANTICIPATING THE HANDS OF FATE: MY SPINRAZA JOURNEY – PT. 3

Another day, another spinal tap. I think that’s how the saying goes, right?

The ride to Boston Children’s was anything but peaceful yesterday. Bumper-to-bumper traffic on I-95 hit and, suddenly, I was most definitely going to be absurdly late to my third spinal tap procedure. Although only an hour away, smooth cruising en route to the city has never been a guarantee. Throw in a Monday morning and rush hour commute, my parents and I had basically set ourselves up for failure.

My mind drifted through the stop and go motion on the ride up as I’ve so frequently done these last few weeks. As the time since first starting this journey progresses, I find myself getting more anxious. The closer I get to the last loading dose, the closer I get to finding out whether this drug is going to be effective for me or not. With each passing day, I wonder if today is going to be the day that I finally start to notice a difference, but that has not happened yet. This isn’t to say I feel discouraged about the outcome thus far, but it’s more about an increasing feeling of fear and uncertainty that this could very well not work.

Through traffic jams and overplayed radio hits, I kept replaying in my head the 7 words my neurologist spoke on the night he called to tell us about this opportunity…

“Her disease may have progressed too far.”

Just like the local anesthetic the surgeon injects into my back, it stung a little to hear that. So, on the ride up to Boston yesterday morning, I started recounting all of my body’s little victories and defeats as far back as I could remember, and one time stood out in particular.

I had gone to the beach last summer, and following a day at the shore, I went to a Portuguese festival with my family at night. Although I kept it together in front of everyone, inside I was crumbling. My stomach was sick and every inch of my body hurt because I “did too much”. To an average person, it would have been nothing. After all, I simply laid n the beach that day and went to a local festival for dinner. But, according to my body, I pushed my limits far beyond what little I could handle, and that night, I went home and cried. Not because my stomach was sick or that every bone in my body ached, but because I wanted to have just a little more energy so I could be like any other 20-something-year-old.

To my surprise, the following morning I woke up feeling ENERGIZED- something that maybe happened twice a year. I remember being out “late” (I use that term loosely because late to me is 10pm 😉 ) for a friend’s birthday and feeling better than ever. I could speak over the loud music without feeling short of breath, I could sit up in my chair without getting tired and achy, and overall I felt AMAZING and STRONG.

I longed for that day again.

 

Resting in recovery.

I kept going back to that moment while stuck in traffic, and I couldn’t help but wonder if this was a good sign for my future. These days of feeling truly vibrant and energetic are far and few between, but it is obvious that they are still possible. Could it be that…just maybe…this means I have enough strength hidden deep inside me to reap the benefits of Spinraza?

 

But, for now, I wait and see. I lay on the operating table and wait amidst all the poking and prodding. I wait while one of the most talented surgeons in the world carefully and meticulously navigates a needle to my spinal canal while still managing to crack jokes and assure all is well. I wait through the pain and emotions I feel, and by the grace of God and my guardian angels, I wait…and hope…for the best results.

And, I know, I can wait a little longer for this is the moment I’ve waited for my entire life.

 

For Celeste, an angel on earth and now an angel in Heaven. Thank you for watching over me yesterday and helping these words flow so effortlessly into this post. I’ll never forget how you always encouraged me to keep writing.


*Disclaimer: While my goal is to remain as open and honest with you on this new journey, the opinions expressed here represent my own and not the SMA community as a whole. Should you seek medical advice regarding Spinraza, please consult with a medical professional. Thank you for following along!

Posted by

Chronicling my journey while teaching the world that I have SMA, but it will NEVER have me. Life's what you make it, dare to make it a remarkable one✨

25 thoughts on “PLEASANTLY ANTICIPATING THE HANDS OF FATE: MY SPINRAZA JOURNEY – PT. 3

  1. Alyssa you continue to inspire me with your attitude. Your positivity is amazing, I wish you only wonderful things ahead. I pray your angels keep watch over you and give you the strength to endure these injections. Much love sent your way.

  2. Alyssa, I’m not sure that you could possibly realize what an inspiration you are to anyone who knows your story. We are sending prayers, light and love to surround you as you go through your treatments. May God’s grace shower you with every blessing imaginable.

  3. Hang in there… we are all hoping and praying with you.

    Thanks for allowing us to follow you in your journey. You are an inspiration.

  4. I hate being called brave but as a fellow SMA’er I admire your courage and positivity for this procedure. My spine is badly twisted so it would probably be impossible for me to have this, plus at age 52 I am a bit past it lol. You go girl and I have everything crossed that you will feel some benefit soon.
    Carole

  5. My hero! I don’t know where you get all this strength, but I’m so happy that you are a fighter! Uncle Paul and I know in our hearts this is going to be what you need to be much stronger! We are right there with you and love you! MFA and MFT

  6. Hello- First, you are an amazing writer! Each time I open your journey and other things you write on IG- well….you truly are talented! I enjoy reading about your journey- every part of it, the highs and lows, (ok I don’t enjoy reading the lows, but the struggle is real and I admire that you are able to put that out there), the humor and love your doctor has for you, the love and support of your family and friends, etc….If we all had a little Alyssa in us, this world would be a better place-that is what I have learned over the past year of following you on IG. I know I have said this before, so don’t think I am a crazy stalker lady- but finding you on IG randomly has been a true joy and inspiration- not sure how it happened, but  I do live in Mansfield with my husband and two boys so think I could tell we had something in common in our love for the Patriots maybe that is how ! Now that group of guys- I am a crazy stalker lady about I am actually writing to you besides my babbling above because I had a question and not sure you can help! I try and like your Word Press entry’s and it asks me to login. I tried to set up an account, but it wasn’t seeming like I could just join without doing some sort of blog? Am I just not tech savvy to figure this one out!!?  I tried to navigate and figure it out, but was hoping since you use you may know the answer! Thank you so much and GO PATS,Blake Riley

    1. You just made my day with the sweetest words! Thank you, thank you, thank you. I so very much appreciate this. To be honest, I’m not that tech savvy either and am not sure how to answer your question. So you’re not alone in the confusion! But, your comment successfully posted so hey that’s a start lol! Take care. 💛

      PS- We can totally be crazy Patriots stalker ladies together if you’d like. 😉

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s