How Is My SMA?..

For those who are new to who I am. I have a rare disability known as Spinal Muscular Atrophy (SMA) Type Two.

I will be getting my 12th Spinraza injection soon and these past few days I have been feeling a bit more fatigued then usual.

These past few days I have been struggling with brushing my teeth, feeding myself, writing, and other of my daily living. To put it simply I am feeling tired faster more than usual..

I do have help with my mother and my little twin sister, but quite frankly.. I am stubborn when it comes to things like this. Not because I just don’t want any help or I feel like a burden to them or anything like that. It is because I personally feel that once I “accept” help to those minor things I know I won’t be moving my arms much, which to me could do me more harm than good. (This is just me) everyone who lives with SMA or any other disability, we’re all uniquely different in our own way. 

On the positive note. This doesn’t come so much as a surprise to me feeling more tired and fatigued because it seems from my own experience that when it passes and comes to the third month from when I had last got my Spinraza injection. I have noticed I do feel and get more fatigued like this after it has been three months from when I had taken Spinraza.

I get my Spinraza injection every four months (which right now is life term, but I personally am optimistic about the future of SMA simply because of how much technology and medicine is advancing).

How do I feel after I get the Spinraza injection?.. I am glad you asked, haha. I feel the complete opposite compared to how I am feeling right now currently. The best way I can describe the difference is picture you going to the gas station or plug station (if you drive a Tesla) and you fuel up your tank/ recharge your car. I feel recharged and refueled!

So am I looking forward to my next Spinraza injection?.. YOU BET! 

Here is the link of me talking more about Spinraza..

“Disability or not. We all have to restart, recharge, and refocus, as much as we need to.” ~Victortheinspiration 

Much love!

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