A SPINRAZA UPDATE: TO BE CONTINUED

Right about now, I should be laying on the operating table.

I should be clenching my mother’s hand and taking slow, meditative breaths as the surgeon carefully stings my lower back with precision. I should be listening to every click and every spin as a fluoroscopy machine rotates around my body. I should be receiving my fifth dose of Spinraza.

But, instead, I am here. Writing to you from my couch and listening to the rain fall, wishing things could have panned out a little differently today.

“I’m not sure if Monday is in my best interest,” I painfully said to my surgeon over the phone on Friday evening. The words tasted sour as they slipped off my tongue. How did I get here? I worked so damn hard to stay healthy this winter, then something completely out of my control decided to dictate this heart-wrenching decision. But, despite wanting to go for another treatment in the worst way, I knew I had to listen to my body, first.

“You’re a very unique case, and it’s always hard to determine what’s wrong with you,” he reminded me over the phone, advising against a lumbar puncture today. Just to confirm, he dialed in my neurologist who also agreed.

Of course, I’m a unique case, I thought- it’s been the same story for 26 years. But, as much as society tells you that being unique makes you admirable and different, every once in awhile, I wish I could just conform to the norm. I wish I could go to a doctor, have them tell me exactly what is wrong, and send me on my merry way. I wish I wouldn’t self-diagnose on WebMD and work myself into an absolute panic on all the possibilities that could be going wrong. I wish I had answers.

In my previous post, I mentioned how I almost passed out at the dentist. Well, what I thought had been a fluke had become an unfortunate routine for me. Three and a half weeks later, I continue to feel lightheaded. I continue to be sensitive to light. The slightest motions continue to set me off. And, these mini fainting spells continue to occur.

Worst of all, I’m not me. I’ve learned to put on a great show for others, and at times, I do have glimpses of my old self. I’ve learned the triggers and how to respond to them. But, it’s not enough. I’m generally a positive person. I like finding the good in every bad situation, but I’ve exhausted all my attempts at trying to make sense of this. I’ve reached a point where I don’t care about what’s wrong with me, and I’m tired of wasting my days in an ER or doctor’s office. (Doctors have some ideas, though.) I just want to get better. 

Amidst trying to find answers, though, I remind myself that this is all, and forever will be, in God’s hands. He is in charge of guiding the way, and I am in charge of following by faith. Today’s procedure wasn’t a part of His plan, and despite wishing it had been, I put my trust in Him knowing that letting go and putting my faith in God is the only type of control I will ever have in my life.

The past four months I’ve been extremely fortunate. Although I haven’t gained any strength since my last update, I’ve MAINTAINED, and everyone in the SMA community knows how victorious this sweet, sweet word is. Maintaining is good, and maintaining is promising. It means Spinraza is still residing in this little body of mine and working its magic. And, it means I still have time.

Time to fight whatever it is I’m fighting. Time to recuperate afterward. And, time to let God lead the way to my next appointment.

To be continued.

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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✨

9 thoughts on “A SPINRAZA UPDATE: TO BE CONTINUED

  1. Praying for you, Alyssa!! Thank you for your continued posts that give us all so much hope! 🙂 ❤

  2. Thank you so much for sharing your journey. I’m sure it can’t always be easy. Sending healing thoughts and prayers.

  3. You don’t ever have to cover up with me ! I know how hard you work to make each day the best it can be! I could never be as brave as you! I have such admiration for you! Don’t give up! We love you so much! I’m here for you even if you just want to complain! Luv you, sunshine! MFA

  4. Alyssa , keep the faith . You have come a teremdous distance on this journey . Stay strong and believe ” He” will watch over you and provide you with all that you need . Love ya Auntie Rie

  5. Love following your journey with you. Stay strong and know that we are all sharing your ups and downs with you. Keep your faith in God.

  6. I’m so sorry, Alyssa. My mind goes like yours. Something about SMA turns us into unlicensed diagnosticians. I wonder if you have plain old vertigo. It’s comes from the vagus nerve in the brain becoming out of practice when going from lying to sitting. In theory, spending a lot of time reclined in your chair or sleeping with the head of your bed raised could contribute to vertigo because the vagus nerve would not get the challenge of going from full lying to to full upright. The treatment is to do lying to sitting reps over and over every day. I bet your doctor already tested for that. I have fainted in my chair, though, and people don’t realize that fainting in a wheelchair doesn’t work. Fainting is supposed to get you head on the ground so the heart can more easily get blood to the brain. We faint in our chairs, and our head doesn’t go down. For me, everything goes black and my ears get a high pitch ring. Even though I couldn’t see, I was at least able to think when I have fainted. I was lucky I wasn’t alone for either time. I was able to ask for help, to get them to recline my chair, and to take me to where I could lie down all the way. My faints both were from heat exhaustion. I didn’t know I was overheated because I wasn’t sweaty and the sun felt nice compared to the air conditioning. The fainting occurred when I came inside and ate something–the blood was drawn from my head to my stomach to digest food. Oh–I was on my period, too, which contributed to the dehydration that caused the heat exhaustion. Anyway, fainting sucks, but these types of things can have simple causes. Time spent investigating at the ER and doctors office isn’t wasted. Thomas Edison tried over 1,000 times to invent a light bulb before finding one that didn’t burn out right away. He failed his way to success. Without figuring out what didn’t work and why, he couldn’t know what he should try.next. Negative test results rule out a lot of scary problems. No diagnosis sometimes means there is no serious underlying problem. Mild problems are harder to diagnose because able-bodied people aren’t so bothered that they go to the doctor. Also, some symptoms don’t amount to a disease For example, I was totally freaked out when I felt a humming bird flapping its wings in my chest during the night or 10 minutes in the night. I thought I was having a heart attack, but it stopped. I knew they couldn’t help at the ER if my vitals were normal. It happened again a few days later. I went to the doctor, and had to wear a heart monitor for 24 hours. It turned out I have an extremely normal heart beat. Apparently, there are people who say they feel a bird in their chest. It’s called paroxysmal tachycardia. It’s not an illness or problem. It just feels weird. They don’t know why it happens.

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