My Thoughts on Treatment - Both Good and Bad
The term that has always been used in the SMA community prior to treatment was a cure. Fight for the Cure, Cure SMA, Help Find a Cure!
Treatments are not a cure
Treatment should not be confused with cure. A cure to me always meant a miraculous change or an end to this diagnosis. I have had to reprogram my thoughts to include treatment.
It is an exciting time for the SMA community to actually have some options that may change the trajectory of this disease with even more on the horizon! I honestly did not think I would have to grapple with this in my lifetime.
Of course, I always have hoped for something but that’s all it was... a hope.
What if I had access to treatment sooner?
I think of treatment as a placeholder for me as a middle-aged woman with hopes of more advancements in the future. For the younger ones though, I can see how it is literally lifesaving and life-altering.
It brings tears of joy to me and I’m in awe of what science has done. There is also this tiny part of me that is sad for me.
Had this shown up in my life earlier on, I would have gotten to keep more of my physical ability. These thoughts come with shame, regret, and resentment.
I want to write that so that if someone else is feeling like this they know they are not alone.
Grateful for a community that has never given up
I know that these treatments have come with a price. Many before me have fought for these advancements and some have paid the ultimate price with their lives.
My heart aches for the families who have dealt with that loss and the thought that they could have saved their loved one now must be a lot to contend with. I am forever grateful to this community that truly has never given up.
My experience starting a new treatment for SMA
I myself have been on treatment for three weeks now. It was a very personal choice and one dependent on many variables. Like insurance, side effects, and fertility status to name a few.
I know that some choose to not seek treatment. We have to remember that is a choice and to support this decision as well.
Treatment thus far has been interesting for me. My first few days on this new medication felt like a fairytale. My energy level was like none I had felt in quite a long time!
Everything was easier; including eating, using the bathroom, cleaning, holding my phone up, and showering. I have had horrible pain in my left shoulder for years now and it was just gone! Like I was back to my old self.
However, this newfound energy and freedom, and elation were over by the end of week one. The strength and freedom from pain were over. I had to again grieve advancements that had came as quickly as they disappeared.
Hopeful that I made the right decision
I am now back to where I started, but add in some headaches, nausea and bloating, and sleep disturbances. I'm hopeful that this treatment is doing something for me. I am just not seeing it at the moment.
It is mentally hard to grapple with. Am I doing the right thing? Will this truly help me in the long run? Can I make it to the next treatment option? Only time will tell.
Is self advocacy a part of your daily life?