Meds or No Meds?

I used to save my empty pill bottles, thinking a Pinterest craft would catch my eye and I would have a good use for my vast collection of rusty-colored medicine containers. Instead, my stockpile grew so rapidly I had no choice but to give in and trash them. Unless I plan on stuffing my walls with these things, there’s no way I can recycle them fast enough.

CellCept: the first medication I was prescribed to slow the progression and damage caused by scleroderma. (Photo by Lisa Weber)

Six years ago, I wouldn’t even take cold medicine or pain relievers unless I was in dire need. I’m talking about an emergency type of need. I was part of the health movement that believed medicine was just a Band-Aid that only covered up a chance for a cure.

While I still believe food and lifestyle choices have much to do with our health, I no longer scoff at the idea of taking pills.

Fearing the side effects

Remember the days when commercials would entertain you in between the scenes of your favorite shows? As a little girl, I would sit in front of the TV with that confused look on my face. Commercials would boast about all the wonderful things their pills could do for you. Then they would conclude with a mile-long list of possible side effects. A spokesman would talk faster than an auctioneer: “Upset stomach, headaches, brain infections, possible death …” How could anyone think those medicines were worth all those horrible side effects?

Then I became sick. My once-healthy body was attacking my internal organs. Doctors prescribed the first medication as soon as my lungs started to scar. It was a scary and powerful immunosuppressant called CellCept (mycophenolate mofetil).

Worth the risk?

The pamphlet that came with this medication terrified me. It had more than 10 pages of possible reactions, including an increased risk of certain cancers. I wouldn’t wish any of this on my worst enemy!

Doctors helped me understand that the risks of my disease were much worse than the risks of taking the medication. The only thing more frightening than the warning on the pill bottle was the list of deadly side effects caused by scleroderma.

So, there I was, holding three pills as large as kidney beans. It was difficult to force myself to bring them to my mouth. I had to let go of my perception that this medicine was dangerous. I had to embrace that it was my lifeline.

Although I had a rational understanding of why I needed to diligently take my medicine, I struggled twice a day for over three years. Once in the morning and again at bedtime. As I choked down the horse pills, I begged in my daily prayers to be kept safe. Then I would worry about what the medication could do to me, and wonder if it would be responsible for shortening my life expectancy.

A different view

You can imagine my relief when a new doctor recommended tapering off this harsh treatment. My lungs had stabilized and no further damage was occurring.

But the relief was short-lived. After just three months on a lower dose, my body waged a war against itself once again. It began attacking my lungs, stomach, and hands as if it were a hungry predator. I remember when I got the results of my lung function tests. I didn’t need medical numbers to tell me that we had made a big mistake. That medicine I was so afraid of was actually my miracle. My body couldn’t be trusted to behave correctly. I needed the medication to stay alive.

Choosing to embrace medicine

It’s challenging to live in a world in which people can share their opinions and beliefs with such conviction. The internet is always flooded with individuals trying to convince you to think a certain way. It’s almost impossible to ignore all those healthy people claiming that you don’t need medicine to be cured. After all, they are the ones literally hiking up mountains while you struggle to bring a load of laundry upstairs.

But I’ve come full circle this past year. I understand that my disease has no cure, and that medicine is my extended warranty. Since I’ve been back on the highest dose, we have halted the disease’s progression in my lungs once again.

While I can never regain the lung function I lost, I’m grateful for how it has played out. I no longer worry about each dose of the medication. I stress less about what the immunosuppressive treatment can do to me, and instead, I rejoice over what it does for me. It’s keeping me alive.

We need to stop living our lives through the experiences of others. Until they walk in our shoes, they don’t know what they would do. But I’d like to believe they would choose to fight with whatever tools they had access to. Even if it was a pharmaceutical pill.

Life is always worth every risk.

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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.