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When Your Lifesaving Medication Comes at a 'Cost' to Your Body

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As I recently passed six years since my lupus diagnosis, part of me is celebrating as there were so many days I never thought I’d see this point. Other parts of me are thinking in horror, “How did I get here?” and “What have I done to my body to get to this point?”

I’m preparing for yet another six-hour car ride each way to see even more new specialists. I know I’ll be left with lots of time alone to think. As I see these specialists and we discuss the long-term medication side effects, I know I’ll be once again left wondering why this subject is never really talked about.

These are the conversations that are never had or not given enough attention until you’re the 25-year-old needing cataract surgery or you’re diagnosed with osteopenia. This is a part of the harsh realities of living with illnesses and should be part of conversations with your care team. Lupus was just the start of it and I’ve since added on lots of diagnoses which have come with even more medications.

Every pill, every eye drop, every inhaler, every nose spray, every infusion, every nebulized medication and every other medication, every treatment option comes at a “cost” to your body. Everything comes with side effects and the risk of other illnesses. Yet treating the immediate illness, or in my case illnesses, far outweighs the concerns of what could happen in the future. There is a cost of staying alive – and I’m not talking about the financial cost.

At what point do the side effects and negatives of a medication outweigh the benefits? Each day and each handful of medication comes with risks. One might be hair thinning and increased risk of developing blood cancers. Another one can damage my liver or kidneys. Some even have the warning of death, so I’m fighting potentially life-threatening illnesses with medications that could kill me. The irony of that statement isn’t lost on me.

If I read with fear every medication leaflet, then I’d never sleep at night for fear of what might happen. I’m not sure if the hope is that these side effects don’t happen to me or that I’ll be dead before the major ones happen so it won’t matter anyways.

This one medication has helped me through countless autoimmune flares, cases of pneumonia, other infections and severe allergic reactions. Every time we’ve tried to get off it, my inflammatory markers have skyrocketed and at this point our only goal is to get me to the lowest tolerable dose. I know without this medication I’d be dead by now.

I love to hate and hate to love this one as it has caused skin damage, easy bruising, weakened my bones, in some joints caused early stages of bone death, cataracts and it’s ruined my adrenal glands. This same medication is why my friend, younger than I am, needed a hip replacement. One isn’t supposed to be on it long-term and I’ve been on it for over five years.

So I’m on this pill staying alive at the expense of other parts of my body. I’m even now on some medications and have to see some new specialists to help treat the side effects caused by this. Some might ask, “Is it worth it?” We did what we had to do to stay alive and for me to keep living, and I’ve made it clear from the beginning that my concern is quality of life over quantity of life. I can’t even say I regret it or regret the decisions made.

Nobody should ever be in a position where they have to make these decisions. I know everything I’m putting in my body, my body is trying to reject in the form of side effects, and yet this is what I need to do to stay alive. As my one doctor puts it, at this point I have to pay to play (stay alive) and every medication decision needs to be carefully balanced as we know it’s going to impact my body and interact with my other medications.

Currently I’m taking medications over 15 different times a day. Most of my days are spent in med protocols or procedures. So not only do I miss out on so many things due to my illnesses, like being able to work a full- (or even part-) time job, dining out at most restaurants as they aren’t equipped to handle severe food allergies and needing to limit sun and heat exposure, but I now have to find a way to balance my medication (and side effect) schedule with any attempts at living.

There is never a time where I’m thinking about medications or what I need to do next. Meds one through three are an hour before breakfast with inhaler one being before breakfast. Eye drop one is before breakfast and at least 15 mins before eye drop two, and liquid med one needs to be 15-30 mins before breakfast… and I could keep going forever. This is what I need to do to stay alive, this is my reality, and my only other choice would be to stop, give up and let death win.

I hate all these medications, I hate how they’ve destroyed my body, I hate the aftertaste, I hate the side effects and I dread the daily handfuls (I can take over 20 pills at once). No matter how much disdain I have for them, they have allowed me to complete half marathons, travel the world, volunteer at a summer camp for chronically sick children and do so many things I know I would have never been able to do otherwise. I’m not going to live forever, nor would I want to, but while I’m here I don’t want to survive, I want to live. Once my life crosses that line into just existing and I’m no longer able to do the things that bring me joy, then I’m no longer living and lots of things will need to be re-evaluated.

Even though I’m perpetually exhausted and at times my soul is weary, I accept that once again this is what needs to be done and all a part of what it takes to stay alive. At this point, the cost has not become too great as my desire to live is much greater than the physical and physiological cost of all these medications on me and my body.  I have a lot of fight left in me and have so much more I want to do with my life that not doing this isn’t an option for me.

Thinkstock photo via zozzzzo.

Originally published: August 14, 2017
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