I find myself with new aches and pains as I blow out my candles each year of my life with spinal muscular atrophy (SMA). Managing the pain has been difficult. If I could be on the smallest number of medications possible, it would make me sleep better at night, knowing I’m not slowly destroying my insides. However, my pain is also keeping me awake at all hours of the night. Either situation isn’t beneficial for my health. The pain is starting to make faster demands for me to rest. And I feel like I’m more often losing out on participating in activities I once really enjoyed. 

Nevertheless, I have a few justifications for why I don’t feel comfortable taking pain medications. One of the reasons is, my pain is chronic. It’s not temporary. Being on pain medications long-term can greatly affect our health, and eventually, lead to other ailments. I’m only 35 and would prefer to keep my insides as healthy as possible, and as long as possible. I’m afraid that in the future I’ll eventually become dependent on a cocktail full of pharmaceuticals. I’ve tried to manage pain that way before, and I didn’t enjoy how I felt.  Don’t get me wrong, I’m not against taking something if I have a big event, or I know I’ll be in my chair for many hours. But, habitually taking them concerns me. 

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Another worry is becoming dependent. Addiction runs in my family, and that puts me at a higher risk for dependency. I’ve witnessed some friends with SMA struggle to get off of their medications, and even experience some difficult withdrawals. I don’t want that to be an additional thing I have to worry about living with this disease. And, let me reiterate, I’m not 100% against medication. I know there are moments when medication is the only option and can save lives. However, I also know there are some alternatives that can help as well. 

Nevertheless, recently I’ve been using herbal supplements and CBD oils without the THC. These alternatives seem to be managing and reducing many of my aches and pains. The only downside to these products is the price. Using them daily can be extremely costly, and hard to afford on a monthly basis. I wish insurance could cover the cost for natural, alternative treatment options. I feel it’s only logical we should be given the right to choose what we put in our bodies. And pharmaceutical medications are just as costly, or more. Also, doctors seem to be more open about using natural approaches to fit the individual’s needs. 

I find this topic something serious to discuss because those of us with rare genetic conditions are very fragile. We have to be conscious when it comes to maintaining our health.  If something goes wrong internally, and surgery is required, serious danger is ahead. The survival rate for undergoing surgery as an adult with SMA is too low for me to neglect what enters my body. Using something natural, but effective, puts me at rest knowing it won’t hurt me over time.  It also reduces the risk of bad side effects and withdrawals. Nevertheless, in the near future, I hope financial provision will be available to help lead and support happier, healthier, and longer lives.